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"content": "\u003cp>Zunika Crenshaw cringes as a tire swing whips her children around in circles just a little too fast. It's a sunny afternoon in the park, in the East Bay town of Pleasanton. As her children play, she keeps a close watch on their breathing.\u003c/p>\n\u003cp>She says asthma is in her genes.\u003c/p>\n\u003cp>“You have a family, a person who has four kids, and all of them have it, including me,\" she says. \"And then my mom has it, and my sister’s two kids.\"\u003c/p>\n\u003cp>A little girl -- 3-year-old Jhase -- runs over to her, wheezing. Crenshaw grabs an inhaler, and her daughter breathes deeply from it.\u003c/p>\n\u003cp>“Perfect!” says Jhase. She lays her head against her mother’s chest, then runs back to her brothers.\u003c/p>\n\u003cfigure id=\"attachment_175958\" class=\"wp-caption aligncenter\" style=\"max-width: 4032px\">\u003cimg class=\"wp-image-175958 size-full\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/06/IMG_0391.jpg\" alt=\"The Crenshaw family at a park in Pleasanton, CA. Everyone in the family struggles with allergies or asthma. \" width=\"4032\" height=\"3024\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0391.jpg 4032w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0391-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0391-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0391-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0391-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0391-1920x1440.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0391-960x720.jpg 960w\" sizes=\"(max-width: 4032px) 100vw, 4032px\">\u003cfigcaption class=\"wp-caption-text\">Zunika Crenshaw packs her purse full of asthma and allergy medications for all her kids when they come to the park near their house in Pleasanton. \u003ccite>(Lesley McClurg/ KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Crenshaw drops the inhaler in a pile of medications in her purse. She points to various pill bottles.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“Zyrtec, and this is ClariSpray. And there’s albuterol and Dulera.”\u003c/p>\n\u003cp>There are more drugs at home.\u003c/p>\n\u003cp>\u003cstrong>Asthma Hits Black Children Harder\u003c/strong>\u003c/p>\n\u003cp>Asthma is the \u003ca href=\"http://www.who.int/respiratory/asthma/en/\" target=\"_blank\">leading\u003c/a> chronic disease among children, but it hits \u003ca href=\"http://minorityhealth.hhs.gov/omh/browse.aspx?lvl=4&lvlID=15\" target=\"_blank\">some populations harder\u003c/a> than others.\u003c/p>\n\u003cp>According to the federal \u003ca href=\"http://www.cdc.gov/asthma/most_recent_data.htm\" target=\"_blank\">Centers for Disease Control and Prevention\u003c/a>, black children are twice as likely to have asthma as white children. And black children are 10 times more likely than white kids to die of complications from asthma.\u003c/p>\n\u003cp>A team of UCSF scientists is on a mission to understand why. The researchers are digging into genetic clues that may have been overlooked until now.\u003c/p>\n\u003cp>\u003c!-- iframe plugin v.4.3 wordpress.org/plugins/iframe/ -->\u003cbr>\n\u003ciframe id=\"datawrapper-chart-17wUy\" src=\"//datawrapper.dwcdn.net/17wUy/4/\" frameborder=\"0\" allowtransparency=\"true\" allowfullscreen=\"allowfullscreen\" webkitallowfullscreen=\"webkitallowfullscreen\" mozallowfullscreen=\"mozallowfullscreen\" oallowfullscreen=\"oallowfullscreen\" msallowfullscreen=\"msallowfullscreen\" width=\"100%\" height=\"400\" scrolling=\"yes\" class=\"iframe-class\">\u003c/iframe>\u003c/p>\n\u003cp>UCSF geneticist Marquitta White just published a \u003ca href=\"http://link.springer.com/article/10.1007%2Fs00251-016-0914-1\" target=\"_blank\">study\u003c/a> finding the majority of genetic information scientists have on asthma patients doesn’t apply to African-Americans.\u003c/p>\n\u003cp>“The majority of genetic studies, not just in asthma but in most diseases, are done in Caucasian- or European-descent populations,\" White explains. \"The longest studies do not really include very many minority populations, which means that most patients aren’t getting the best care, because we don’t really know what the disease etiology is in their particular population.\"\u003c/p>\n\u003cp>UCSF pulmonologist Esteban Buchard emphasizes that medications also work differently in different populations. As an example, he points to the small print on the instructions for a common asthma medication called Advair.\u003c/p>\n\u003cp>\"It specifically says that if you’re African-American and you take this, you have an eightfold risk of dying,” he says.\u003c/p>\n\u003caside class=\"pullquote alignright\">'I think that what we should be striving for is equal care for everyone. And in order to do that you have to know what the disease is doing in everyone. That’s step one.'\u003ccite>Marquitta White, UCSF\u003c/cite>\u003c/aside>\n\u003cp>The UCSF team is analyzing the genes of black, Mexican-American, and Puerto Rican children to better understand drug responses in each population.\u003c/p>\n\u003cp>\"One of our hypotheses is that what’s underlying this huge mortality in African-American children is the fact that the most commonly prescribed drug for asthma is albuterol,\" says White. \"The problem is that not everyone responds to albuterol the same way. And actually, Puerto Rican and African-American children have the worst drug response. So, you’re looking at two populations with the worst drug response with the highest mortality. We have a feeling those things might be related.\"\u003c/p>\n\u003cp>\u003cstrong>The Right Drugs Matter\u003c/strong>\u003c/p>\n\u003cp>Good treatment is key to preventing the kinds of serious asthma attacks that keep kids home sick.\u003c/p>\n\u003cp>The Crenshaw children are missing fewer school days since they started visiting the \u003ca href=\"http://prescottjoseph.org/programs/breathmobile/\" target=\"_blank\">Breathmobile\u003c/a> -- a long motorhome converted into an asthma clinic. The clinic is run by a non-profit called the \u003ca href=\"http://prescottjoseph.org/\" target=\"_blank\">Prescott-Joseph Center\u003c/a>. It travels throughout the East Bay offering free treatment to low-income families.\u003c/p>\n\u003cp>Inside, a medical assistant tests the lungs of a 5-year-old girl who's fiddling with her tight braids. The clinician pauses several times so the girl can blow her nose.\u003c/p>\n\u003cfigure id=\"attachment_175961\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003cimg class=\"size-large wp-image-175961\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/06/IMG_0352-1180x869.jpg\" alt=\"A lung test on the Breathmobile reveals five-year-old Brooklyn's pulmonary function is compromised by her asthma. \" width=\"640\" height=\"471\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0352-1180x869.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0352-400x295.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0352-800x589.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0352-768x566.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0352-1920x1414.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0352-960x707.jpg 960w\" sizes=\"(max-width: 640px) 100vw, 640px\">\u003cfigcaption class=\"wp-caption-text\">A lung test on the Breathmobile reveals 5-year-old Brooklyn Turner's pulmonary function is compromised by her asthma. \u003ccite>(Lesley McClurg/ KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Dr. Pat Granberg, a pediatrician, asks the girl's mother about their living conditions, their neighborhood and their financial situation, to determine likely triggers for asthma. The disease can be caused by a number of factors, including obesity, air pollution, access to healthcare, molds, mildews, pets, perfumes and smoking. But Granberg begins an assessment by asking whether asthma runs in the family, because there's usually a genetic link.\u003c/p>\n\u003cp>\u003cstrong>One Size Doesn't Fit All\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>\"On average, \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3151648/\" target=\"_blank\">60 percent\u003c/a> of what's going to determine whether or not you have asthma is going to be due to genetic factors,” says Marquitta White.\u003c/p>\n\u003cp>She says depending on the population, that number could range from 35 to 90 percent.\u003c/p>\n\u003cp>[contextly_sidebar id=\"qMdUf5hNB0R65Qr3W4tyx9d9sJI9YAHP\"]\u003cbr>\n\"I think that what we should be striving for is equal care for everyone,\" says White, \"and in order to do that you have to know what the disease is doing in everyone. That’s step one.\"\u003c/p>\n\u003cp>Buchard believes a lot of health disparities could be explained if more minorities were included in genetic research. To illustrate his point, he looks back to when researchers studied heart disease only in men.\u003c/p>\n\u003cp>“Women present differently than men do for heart attacks,\" says Buchard. \"So a whole generation of physicians were misclassifying and misdiagnosing women simply because women were not involved in the original clinical trials.”\u003c/p>\n\u003cp>The general focus on white patients in research pushed Congress to pass\u003ca href=\"https://grants.nih.gov/grants/funding/women_min/guidelines_amended_10_2001.htm\"> legislation\u003c/a> in 1993 requiring that publicly funded medical studies include more minorities.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>But a recent\u003ca href=\"http://www.atsjournals.org/doi/abs/10.1164/rccm.201410-1944PP#.V0TCyuSLWYi\" target=\"_blank\"> review\u003c/a> of lung disease studies found only five percent of publicly funded research included patients of color.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Zunika Crenshaw cringes as a tire swing whips her children around in circles just a little too fast. It's a sunny afternoon in the park, in the East Bay town of Pleasanton. As her children play, she keeps a close watch on their breathing.\u003c/p>\n\u003cp>She says asthma is in her genes.\u003c/p>\n\u003cp>“You have a family, a person who has four kids, and all of them have it, including me,\" she says. \"And then my mom has it, and my sister’s two kids.\"\u003c/p>\n\u003cp>A little girl -- 3-year-old Jhase -- runs over to her, wheezing. Crenshaw grabs an inhaler, and her daughter breathes deeply from it.\u003c/p>\n\u003cp>“Perfect!” says Jhase. She lays her head against her mother’s chest, then runs back to her brothers.\u003c/p>\n\u003cfigure id=\"attachment_175958\" class=\"wp-caption aligncenter\" style=\"max-width: 4032px\">\u003cimg class=\"wp-image-175958 size-full\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/06/IMG_0391.jpg\" alt=\"The Crenshaw family at a park in Pleasanton, CA. Everyone in the family struggles with allergies or asthma. \" width=\"4032\" height=\"3024\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0391.jpg 4032w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0391-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0391-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0391-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0391-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0391-1920x1440.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0391-960x720.jpg 960w\" sizes=\"(max-width: 4032px) 100vw, 4032px\">\u003cfigcaption class=\"wp-caption-text\">Zunika Crenshaw packs her purse full of asthma and allergy medications for all her kids when they come to the park near their house in Pleasanton. \u003ccite>(Lesley McClurg/ KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Crenshaw drops the inhaler in a pile of medications in her purse. She points to various pill bottles.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“Zyrtec, and this is ClariSpray. And there’s albuterol and Dulera.”\u003c/p>\n\u003cp>There are more drugs at home.\u003c/p>\n\u003cp>\u003cstrong>Asthma Hits Black Children Harder\u003c/strong>\u003c/p>\n\u003cp>Asthma is the \u003ca href=\"http://www.who.int/respiratory/asthma/en/\" target=\"_blank\">leading\u003c/a> chronic disease among children, but it hits \u003ca href=\"http://minorityhealth.hhs.gov/omh/browse.aspx?lvl=4&lvlID=15\" target=\"_blank\">some populations harder\u003c/a> than others.\u003c/p>\n\u003cp>According to the federal \u003ca href=\"http://www.cdc.gov/asthma/most_recent_data.htm\" target=\"_blank\">Centers for Disease Control and Prevention\u003c/a>, black children are twice as likely to have asthma as white children. And black children are 10 times more likely than white kids to die of complications from asthma.\u003c/p>\n\u003cp>A team of UCSF scientists is on a mission to understand why. The researchers are digging into genetic clues that may have been overlooked until now.\u003c/p>\n\u003cp>\u003c!-- iframe plugin v.4.3 wordpress.org/plugins/iframe/ -->\u003cbr>\n\u003ciframe id=\"datawrapper-chart-17wUy\" src=\"//datawrapper.dwcdn.net/17wUy/4/\" frameborder=\"0\" allowtransparency=\"true\" allowfullscreen=\"allowfullscreen\" webkitallowfullscreen=\"webkitallowfullscreen\" mozallowfullscreen=\"mozallowfullscreen\" oallowfullscreen=\"oallowfullscreen\" msallowfullscreen=\"msallowfullscreen\" width=\"100%\" height=\"400\" scrolling=\"yes\" class=\"iframe-class\">\u003c/iframe>\u003c/p>\n\u003cp>UCSF geneticist Marquitta White just published a \u003ca href=\"http://link.springer.com/article/10.1007%2Fs00251-016-0914-1\" target=\"_blank\">study\u003c/a> finding the majority of genetic information scientists have on asthma patients doesn’t apply to African-Americans.\u003c/p>\n\u003cp>“The majority of genetic studies, not just in asthma but in most diseases, are done in Caucasian- or European-descent populations,\" White explains. \"The longest studies do not really include very many minority populations, which means that most patients aren’t getting the best care, because we don’t really know what the disease etiology is in their particular population.\"\u003c/p>\n\u003cp>UCSF pulmonologist Esteban Buchard emphasizes that medications also work differently in different populations. As an example, he points to the small print on the instructions for a common asthma medication called Advair.\u003c/p>\n\u003cp>\"It specifically says that if you’re African-American and you take this, you have an eightfold risk of dying,” he says.\u003c/p>\n\u003caside class=\"pullquote alignright\">'I think that what we should be striving for is equal care for everyone. And in order to do that you have to know what the disease is doing in everyone. That’s step one.'\u003ccite>Marquitta White, UCSF\u003c/cite>\u003c/aside>\n\u003cp>The UCSF team is analyzing the genes of black, Mexican-American, and Puerto Rican children to better understand drug responses in each population.\u003c/p>\n\u003cp>\"One of our hypotheses is that what’s underlying this huge mortality in African-American children is the fact that the most commonly prescribed drug for asthma is albuterol,\" says White. \"The problem is that not everyone responds to albuterol the same way. And actually, Puerto Rican and African-American children have the worst drug response. So, you’re looking at two populations with the worst drug response with the highest mortality. We have a feeling those things might be related.\"\u003c/p>\n\u003cp>\u003cstrong>The Right Drugs Matter\u003c/strong>\u003c/p>\n\u003cp>Good treatment is key to preventing the kinds of serious asthma attacks that keep kids home sick.\u003c/p>\n\u003cp>The Crenshaw children are missing fewer school days since they started visiting the \u003ca href=\"http://prescottjoseph.org/programs/breathmobile/\" target=\"_blank\">Breathmobile\u003c/a> -- a long motorhome converted into an asthma clinic. The clinic is run by a non-profit called the \u003ca href=\"http://prescottjoseph.org/\" target=\"_blank\">Prescott-Joseph Center\u003c/a>. It travels throughout the East Bay offering free treatment to low-income families.\u003c/p>\n\u003cp>Inside, a medical assistant tests the lungs of a 5-year-old girl who's fiddling with her tight braids. The clinician pauses several times so the girl can blow her nose.\u003c/p>\n\u003cfigure id=\"attachment_175961\" class=\"wp-caption aligncenter\" style=\"max-width: 640px\">\u003cimg class=\"size-large wp-image-175961\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/06/IMG_0352-1180x869.jpg\" alt=\"A lung test on the Breathmobile reveals five-year-old Brooklyn's pulmonary function is compromised by her asthma. \" width=\"640\" height=\"471\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0352-1180x869.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0352-400x295.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0352-800x589.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0352-768x566.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0352-1920x1414.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/06/IMG_0352-960x707.jpg 960w\" sizes=\"(max-width: 640px) 100vw, 640px\">\u003cfigcaption class=\"wp-caption-text\">A lung test on the Breathmobile reveals 5-year-old Brooklyn Turner's pulmonary function is compromised by her asthma. \u003ccite>(Lesley McClurg/ KQED)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Dr. Pat Granberg, a pediatrician, asks the girl's mother about their living conditions, their neighborhood and their financial situation, to determine likely triggers for asthma. The disease can be caused by a number of factors, including obesity, air pollution, access to healthcare, molds, mildews, pets, perfumes and smoking. But Granberg begins an assessment by asking whether asthma runs in the family, because there's usually a genetic link.\u003c/p>\n\u003cp>\u003cstrong>One Size Doesn't Fit All\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>\"On average, \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3151648/\" target=\"_blank\">60 percent\u003c/a> of what's going to determine whether or not you have asthma is going to be due to genetic factors,” says Marquitta White.\u003c/p>\n\u003cp>She says depending on the population, that number could range from 35 to 90 percent.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>\u003cbr>\n\"I think that what we should be striving for is equal care for everyone,\" says White, \"and in order to do that you have to know what the disease is doing in everyone. That’s step one.\"\u003c/p>\n\u003cp>Buchard believes a lot of health disparities could be explained if more minorities were included in genetic research. To illustrate his point, he looks back to when researchers studied heart disease only in men.\u003c/p>\n\u003cp>“Women present differently than men do for heart attacks,\" says Buchard. \"So a whole generation of physicians were misclassifying and misdiagnosing women simply because women were not involved in the original clinical trials.”\u003c/p>\n\u003cp>The general focus on white patients in research pushed Congress to pass\u003ca href=\"https://grants.nih.gov/grants/funding/women_min/guidelines_amended_10_2001.htm\"> legislation\u003c/a> in 1993 requiring that publicly funded medical studies include more minorities.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>But a recent\u003ca href=\"http://www.atsjournals.org/doi/abs/10.1164/rccm.201410-1944PP#.V0TCyuSLWYi\" target=\"_blank\"> review\u003c/a> of lung disease studies found only five percent of publicly funded research included patients of color.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Theranos CEO Holmes' Net Worth Is Now Zero, Says Forbes",
"title": "Theranos CEO Holmes' Net Worth Is Now Zero, Says Forbes",
"headTitle": "KQED Future of You | KQED Science",
"content": "\u003cp>\u003cstrong>Update Wednesday, June 1:\u003c/strong> Forbes Slashes Estimates of Elizabeth Holmes' Net Worth\u003c/p>\n\u003cp>Forbes \u003ca href=\"http://www.forbes.com/sites/matthewherper/2016/06/01/from-4-5-billion-to-nothing-forbes-revises-estimated-net-worth-of-theranos-founder-elizabeth-holmes/#610806f12f29\" target=\"_blank\">announced today\u003c/a> it has revised its estimate of the net worth of Theranos founder Elizabeth Holmes, from last year's $4.5 billion to: absolutely nothing. Analysts cut the estimate of the company's net worth to $800 million, a fraction of its previous estimated value of $9 billion. The magazine reports Theranos had no comment. From the Forbes story:\u003c/p>\n\u003cblockquote>\u003cp>Our estimate of Holmes’ wealth is based entirely on her 50% stake in Theranos, the blood-testing company she founded in 2003 with plans of revolutionizing the diagnostic test market. Theranos shares are not traded on any stock market; private investors purchased stakes in 2014 at a price that implied a $9 billion valuation for the company.\u003c/p>\n\u003cp>Since then, Theranos has been hit with allegations that its tests are inaccurate and is being investigated by an alphabet soup of federal agencies. That, plus new information indicating Theranos’ annual revenues are less than $100 million, has led FORBES to come up with a new, lower estimate of Theranos’ value.\u003c/p>\n\u003cp>FORBES spoke to a dozen venture capitalists, analysts and industry experts and concluded that a more realistic value for Theranos is $800 million, rather than $9 billion.\u003c/p>\u003c/blockquote>\n\u003cp>\u003cstrong>Update Thursday, May 26: \u003c/strong> And now, the lawsuits.\u003c/p>\n\u003cp>On the heels of Theranos \u003ca href=\"http://ww2.kqed.org/futureofyou/2016/05/19/theranos-corrects-tens-of-thousands-of-blood-tests/\">voiding or correcting\u003c/a> tens of thousands of blood tests it performed at its California lab, two suits seeking class action status have been filed in Northern California. The \u003ca href=\"http://fortune.com/2016/05/26/theranos-class-action-lawsuit/\">first suit\u003c/a> was filed Wednesday on behalf of an unidentified Arizona man. The suit accuses the blood-testing company of fraud.\u003c/p>\n\u003cp>Today, a \u003ca href=\"https://cdn2.vox-cdn.com/uploads/chorus_asset/file/6552851/jones-theranos.0.pdf\">second class-action suit\u003c/a> was filed on behalf of a man named Casey Jones. Jones visited a Theranos Wellness Center inside a Phoenix Walgreens in September 2015 to obtain a routine blood panel as well as a test marked \"reproductive health,\" as he was concerned about his ability to impregnate his wife, the suit says. His doctor had spoken highly of Theranos' finger-prick test as being minimally invasive, and Jones was also influenced by heavy media coverage.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"Upon arriving at Walgreens, Mr. Jones' experience differed greatly from what was promoted,\" the lawsuit claims. \"He had several large vials of blood drawn ... the same as what he would have had drawn at any other lab. There was no disclaimer made to Mr. Jones about this apparent change in the blood draw procedure.\"\u003c/p>\n\u003cp>The suit claims Theranos breached its contract with the plaintiff by not drawing blood in the advertised, minimally invasive way. It also recaps the history of Theranos' disastrous government inspection of its lab and claims Theranos failed to maintain its equipment to industry or government standards. The suit also accuses Theranos of deceptive advertising and fraudulent business practices.\u003c/p>\n\u003cp>\"Because of the reported issues with Theranos, Mr. Jones has serious concerns about the lab results he received, including concerns regarding the reliability and accuracy of the tests,\" the suit says.\u003c/p>\n\u003cp>\u003ca href=\"http://www.vanityfair.com/news/2016/05/elizabeth-holmes-theranos-class-action-lawsuit\">The Verge\u003c/a> says Theranos spokeswoman Brooke Buchanan issued the same response to today's lawsuit as she did to yesterday's: “The lawsuit filed today against Theranos is without merit. The company will vigorously defend itself against these claims.”\u003c/p>\n\u003cp>Whether any patients have been truly harmed by decisions they or their doctors made based on inaccurate Theranos results is not yet known. The Wall Street Journal has\u003ca href=\"http://www.wsj.com/articles/theranos-voids-two-years-of-edison-blood-test-results-1463616976\"> reported\u003c/a> that one physician who received a corrected report said she'd unnecessarily sent a patient to the ER based on abnormally high test results.\u003c/p>\n\u003cp>Also of note for Theranos watchers: The Wall Street Journal Wednesday \u003ca href=\"http://www.wsj.com/articles/craving-growth-walgreens-dismissed-its-doubts-about-theranos-1464207285\">recounted the history\u003c/a> of the company's partnership with Walgreens, which allowed for the opening of dozens of Theranos centers inside the drugstore chain's Arizona stores. The story suggests Walgreens, in its eagerness to expand into next-wave health care, did less than due diligence in vetting Theranos.\u003c/p>\n\u003cp>\u003cstrong>Original post: Theranos, From All Angles\u003c/strong>\u003c/p>\n\u003cp>Think fast:\u003c/p>\n\u003cp>Charlize Theron or Scarlett Johannson as Elizabeth Holmes in \"Theranos: The Movie\"?\u003c/p>\n\u003cp>There's a lot of drama here, as business stories go. Is the company going to be definitively exposed as the Enron of biotech startups? Or will it be vindicated as a misunderstood and unfairly persecuted innovator that, well, made a few mistakes.\u003c/p>\n\u003cp>If the former, you get the sense only a talent on a par with \u003ca href=\"http://www.theatlantic.com/magazine/archive/2008/01/the-angriest-man-in-television/306581/\">David Simon's\u003c/a> could coherently dramatize the shortcomings of the multiple institutions implicated in this mess. The story is compelling even without the appearance to date of the most important characters -- real-life patients who may have been harmed by Theranos' \u003ca href=\"http://ww2.kqed.org/futureofyou/2016/05/19/theranos-corrects-tens-of-thousands-of-blood-tests/\">faulty blood tests\u003c/a>.\u003c/p>\n\u003caside class=\"pullquote alignright\">\u003ca href=\"#articles\">\u003cstrong>See below for Theranos analysis from around the Web.\u003c/strong>\u003c/a>\u003c/aside>\n\u003cp>That may not be the case much longer. Last week, we saw the first report of an actual patient impacted by erroneous results issued by Theranos' California lab. The Wall Street Journal, in a \u003ca href=\"http://www.wsj.com/articles/theranos-voids-two-years-of-edison-blood-test-results-1463616976\">story\u003c/a> about thousands of blood tests Theranos now says were incorrect, reported that a physician in the Phoenix area recently received a revised report for a Theranos patient whom the doctor unnecessarily sent to the ER based on abnormally high results.\u003c/p>\n\u003cp>Nick Stockton, who in \u003ca href=\"http://www.wired.com/2016/05/theranos-inching-towards-legal-bull-issh/\">Wired\u003c/a>, Friday, wrote that Theranos \"is really testing the old adage that all press is good press,\" reported the company has left itself vulnerable to all manner of lawsuits:\u003c/p>\n\u003cblockquote>\u003cp>Many people probably made medical decisions based on those two years of voided tests. Or perhaps they wrongfully decided to forgo medical treatment for a misdiagnosed condition. “If Theranos negligently did blood tests, then someone has a right to sue,” says [UC Berkeley law professor Steven] Davidoff-Soloman. “And it looks like it might be a good case.” But so far, he says he has not seen any examples where a person has popped up and said they were adversely affected by the results from a Theranos test. So again, wait and see.\u003c/p>\n\u003cp>As an accredited lab, Theranos was available to patients through Medicare and Medicaid. “Here you have a situation where they were not just deceiving patients, but also the federal government, who is paying for those tests,” says [University of Michigan law professor Adam] Pritchard. “That is something the Department of Justice is going to be very interested in.” The DOJ itself could bring suit. And depending on what that suit entails, class action lawyers could come calling with cases of mass consumer fraud. Nightmare.\u003c/p>\u003c/blockquote>\n\u003cp>\u003cstrong>'Whatever They're Up To, I Can't Figure It Out'\u003c/strong>\u003c/p>\n\u003cp>Dr. Norman Paradis, a professor of medicine at Dartmouth who has consulted for both diagnostic startups and biomed investors, told me recently that several years ago he looked into Theranos at the request of some potential investors. He found nothing that could be assessed.\u003c/p>\n\u003caside class=\"pullquote alignright\">'Their patents — there’s nothing there. There’s nothing you look at and say, ‘Oh, I can build that.''\u003ccite>Dr. Norman Paradis, Geisel School of Medicine, Dartmouth College\u003c/cite>\u003c/aside>\n\u003cp>\"I said whatever they're up to, I can't figure it out. I didn't see it in their patents or regulatory filings. Their patents -- there's nothing there. There's nothing you look at and say, 'Oh I can build that.'\"\u003c/p>\n\u003cp>Paradis says the molecular diagnostics space is not exactly fertile ground for startups to begin with, because of the royalties due companies that have developed the antibodies indicating a particular illness or condition. Because of this, he says, it is unlikely the low-cost tests Theranos offers are breaking even.\u003c/p>\n\u003cp>\"I have seen smart business types look at this model, and they’ve said I can’t see how you make money here.\"\u003c/p>\n\u003cp>Christina Farr, in \u003ca href=\"http://www.fastcompany.com/3059230/the-theranos-scandal-is-just-the-beginning\">Fast Company\u003c/a>, writes that whatever the company's business plan, it seemed to be a nonstarter with the most prestigious biotech investing firms. \"None of the top biotech investors invested in Theranos,\" Farr wrote. \"Five of the best-regarded biotech firms—Venrock, Third Rock Ventures, Polaris, Deerfield, Versant—either didn't meet with Theranos at all or passed on the pitch. The Silicon Valley firms with health care practices, like Google Ventures and Bessemer Venture Partners, weren't swayed, either.\"\u003c/p>\n\u003cp>Dartmouth's Paradis does give the company credit for submitting over 100 tests for FDA approval, even though a \u003ca href=\"http://www.theverge.com/2015/11/17/9750048/ldt-loophole-fda-hearing-theranos-lab-tests\">legal loophole\u003c/a> regarding \"\u003ca href=\"http://www.fda.gov/medicaldevices/productsandmedicalprocedures/invitrodiagnostics/ucm407296.htm\">Laboratory Developed Tests\u003c/a>\" allows it and \u003ca href=\"http://www.theverge.com/science/2015/11/11/9706356/fda-theranos-health-diagnostics-cancer-tests-regulation-loophole-ldt\">other diagnostic startups\u003c/a> to bring these tests to market without doing so. (The FDA plans on issuing its final version of a \u003ca href=\"http://www.fda.gov/downloads/medicaldevices/deviceregulationandguidance/guidancedocuments/ucm416685.pdf\">draft plan\u003c/a> to phase in \u003ca href=\"https://www.genomeweb.com/molecular-diagnostics/fda-finalize-ldt-guidance-amid-uncertainty-number-genetic-tests-impacted\">oversight of LDTS\u003c/a> sometime this year.)\u003c/p>\n\u003cp>\"For Theranos to decide to go the FDA route does show considerable rigor on Theranos’ part,\" Paradis says. \"When they made that decision, people were not doing it that way.\"\u003c/p>\n\u003cp>Soon, we may get another key development in the story, courtesy of the U.S. government. The Centers for Medicare & Medicaid Services is still mulling whether to revoke the license of Theranos' California lab, and whether to suspend Elizabeth Holmes from involvement in the blood-testing industry for two years. If things go that way, the company still has a couple of administrative appeals available to it. And beyond that, there's always the courts.\u003c/p>\n\u003cp>Meanwhile, Theranos is \u003ca href=\"https://www.statnews.com/2016/05/19/theranos-expansion-plans/\">still hiring\u003c/a>, and Holmes is scheduled to give a presentation at a plenary session of the American Association for Clinical Chemistry's annual meeting in Philadelphia on Aug. 1. \"For the first time, Holmes will present data at a scientific conference that describes Theranos’ technologies, including small sample volume testing and finger-stick collection,\" said the press release.\u003c/p>\n\u003cp>That one should be put on pay-per-view.\u003c/p>\n\u003chr>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003ca id=\"articles\">\u003c/a>Below are some of the most interesting recent takes on the Theranos saga:\u003c/p>\n\u003cul>\n\u003cli>\u003ca href=\"http://www.vanityfair.com/news/2016/05/theranos-silicon-valley-media\">The Secret Culprit in the Theranos Mess\u003c/a> (Nick Bilton, Vanity Fair)\u003cbr>\n\u003cblockquote>\u003cp>(I)f you peel back all of the layers of this tale, at the center you will find one of the more insidious culprits: the Silicon Valley tech press. They embraced Holmes and her start-up with a surprising paucity of questions about the technology she had supposedly developed. They praised her as “the next Steve Jobs,” over and over (the black turtleneck didn’t hurt), until it was no longer a question, but seemingly a fact. At TechCrunch Disrupt, blogger Jon Shieber had his blood drawn onstage as he interviewed her. There were no tough questions about whether Theranos’s technology actually worked; just praise. When it seemed that the tech press had vetted Holmes, she subsequently went mainstream. She got her New Yorker profile, and her face appeared on the cover of T: The New York Times Style Magazine, among others.\u003c/p>\u003c/blockquote>\n\u003c/li>\n\u003cli>\u003ca href=\"http://www.businessinsider.com/why-investor-tim-draper-still-loves-theranos-2016-5\">Blood-testing 'vampires' want to take down Theranos, says investor Tim Draper\u003c/a> (Julie Bort, Business Insider)\u003cbr>\n\u003cblockquote>\u003cp>Troubled blood-testing startup Theranos still has one big, vocal fan: the guy that invested the seed money to get the company started, famed investor Tim Draper. Draper tells Business Insider that of all the startups out there, Theranos is among those he's most excited about. ... Although Draper is not listed as a board member, his take is that all of the questions about Theranos is smoke and mirrors from the established blood-testing industry that doesn't want to see itself overthrown by a one-drop-of-blood-alternative. He says he's seen this struggle many times in his investing career, how telecom companies fought Skype, taxis fought Uber, car companies fought Tesla and so on.\u003c/p>\u003c/blockquote>\n\u003c/li>\n\u003cli>\u003ca href=\"http://www.fastcompany.com/3059230/the-theranos-scandal-is-just-the-beginning\">The Theranos Scandal Is Just The Beginning\u003c/a> (Christina Farr, Fast Company)\u003cbr>\n\u003cblockquote>\u003cp>(A)fter we find our scapegoats, the problem will not be solved. Until we address all the factors that led to Theranos' rise and its downfall, this will happen again. Launch, hype-cycle, demise. Launch, hype-cycle, demise. Again and again. One the biggest catalysts for this cycle? Dumb money. ...The biotech funding process might be flawed, but it works well enough to smell a very large rat.\u003c/p>\u003c/blockquote>\n\u003c/li>\n\u003cli>\u003ca href=\"http://time.com/4299943/the-theranos-downfall-was-inevitable/\">The Theranos Downfall Was Inevitable\u003c/a> (Alice Park, Time)\u003cbr>\n\u003cblockquote>\u003cp>At issue is the secrecy with which Theranos developed and brought to market the technology and its proprietary blood-testing process from day one. Theranos did not share with outside scientists which machines the company used to perform its tests, and they wouldn’t then reveal how its technology differed from the microfluidics that other companies were using to perform similar—though less extensive—assays as Theranos’. Nor did they publish in any peer-reviewed journal any research that proved the effectiveness of their product. To do so, Holmes said, would make them lose their competitive advantage of being the first to offer such tests. When Dr. Eric Topol, director of the Scripps Translational Science Institute, had his blood drawn and tested using the system, he says, “I wasn’t allowed to see the equipment, wasn’t allowed to go near it.”\u003c/p>\u003c/blockquote>\n\u003c/li>\n\u003cli>\u003ca href=\"http://www.wsj.com/articles/from-lending-club-to-theranos-the-limits-of-disruption-1463161745\">From LendingClub to Theranos, the Limits of Disruption\u003c/a> (Justin Lahart, The Wall Street Journal)\u003cbr>\n\u003cblockquote>\u003cp>(E)arly critics of Theranos complained the company had published little data in peer-reviewed journals that would have helped provide insight into the quality of its tests. But innovators often see ignoring criticism as a feature, says University of Toronto economist Joshua Gans, author of a recent book on disruption. That is particularly true when the criticism comes from incumbents who, as ousted Zenefits chief Parker Conrad once complained, often cry foul and look to regulators for protection. The problem is that while critics may be protecting turf, there also may be some truth to what they say. Indeed, the norms incumbents adhere to, and the rules they play by, are often there for reasons that go beyond protecting their moats. That’s particularly true of many old-line industries, such as banking, insurance brokers and medicine, that seem ripe for new entrants.\u003c/p>\u003c/blockquote>\n\u003c/li>\n\u003cli>\u003ca href=\"http://ww2.kqed.org/futureofyou/2016/04/25/analysis-why-medical-lab-experts-were-always-skeptical-of-theranos/\">Analysis: Why Medical Lab Experts Were Always Skeptical of Theranos\u003c/a> (Norman A. Paradis, The Conversation)\u003cbr>\n\u003cblockquote>\u003cp>The vast majority of FDA-approved medically important laboratory tests are based on blood taken from a vein, not from the finger. ... To understand why that matters, let’s start with some simple physiology. The human body can be considered a series of compartments; the concentration of any given molecule in blood or tissue fluid may vary from one compartment to the next. A small molecule, such as glucose, can move easily between these compartments, and any bodily fluid can generally be used to test its concentration. This is why testing blood sugar with a finger prick works. But large, medically important molecules like proteins and lipids are not always found in uniform concentrations throughout the body. The composition of blood from finger pricks from the same person can vary, a problem that doesn’t happen in blood taken from a vein. When you lance a fingertip, you get both blood and tissue fluid, and this means that the concentration of molecules may be different than if the blood sample comes from a vein.\u003c/p>\u003c/blockquote>\n\u003c/li>\n\u003cli>\u003ca href=\"http://fivethirtyeight.com/features/theranos-is-wrong-we-dont-need-more-blood-tests/\">Theranos is Wrong: We Don't Need More Blood Tests\u003c/a> (Katherine Hobson, FiveThirtyEight)\u003cbr>\n\u003cblockquote>\u003cp>Much of the debate over the last few months has been about whether Theranos’s technology can actually do what the company has said it can. But there’s a dubious assumption at the heart of Theranos, arguably just as damning as the questions about its technology. Theranos wants us to believe that ostensibly healthy people can get healthier by having more tests. But the science suggests that is far from true.\u003c/p>\u003c/blockquote>\n\u003c/li>\n\u003cli>\u003ca href=\"http://www.natlawreview.com/article/theranos-sec-s-pursuit-unicorns-and-taking-reins-internal-controls\">Theranos, the SEC’s Pursuit of Unicorns, and Taking the Reins of Internal Controls\u003c/a> (The National Law Review)\u003cbr>\n\u003cblockquote>\u003cp>Even beyond potential misrepresentation issues, we believe the SEC may also be focused on the adequacy of internal controls at privately-held companies, potentially viewing governance and control problems as contributing factors to other issues. ...(I)n a recent speech addressing issues relating to pre-IPO companies, SEC Chair Mary Jo White noted that the SEC was looking closely at privately-held “unicorns”, even where the investors appeared to be venture capital and private equity funds. She stated that control issues were a major risk factor that could lead to opportunities to misstate financial results: “The risk of distortion and inaccuracy is amplified because start-up companies, even quite mature ones, often have far less robust internal controls and governance procedures than most public companies.”\u003c/p>\u003c/blockquote>\n\u003c/li>\n\u003c/ul>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cstrong>Update Wednesday, June 1:\u003c/strong> Forbes Slashes Estimates of Elizabeth Holmes' Net Worth\u003c/p>\n\u003cp>Forbes \u003ca href=\"http://www.forbes.com/sites/matthewherper/2016/06/01/from-4-5-billion-to-nothing-forbes-revises-estimated-net-worth-of-theranos-founder-elizabeth-holmes/#610806f12f29\" target=\"_blank\">announced today\u003c/a> it has revised its estimate of the net worth of Theranos founder Elizabeth Holmes, from last year's $4.5 billion to: absolutely nothing. Analysts cut the estimate of the company's net worth to $800 million, a fraction of its previous estimated value of $9 billion. The magazine reports Theranos had no comment. From the Forbes story:\u003c/p>\n\u003cblockquote>\u003cp>Our estimate of Holmes’ wealth is based entirely on her 50% stake in Theranos, the blood-testing company she founded in 2003 with plans of revolutionizing the diagnostic test market. Theranos shares are not traded on any stock market; private investors purchased stakes in 2014 at a price that implied a $9 billion valuation for the company.\u003c/p>\n\u003cp>Since then, Theranos has been hit with allegations that its tests are inaccurate and is being investigated by an alphabet soup of federal agencies. That, plus new information indicating Theranos’ annual revenues are less than $100 million, has led FORBES to come up with a new, lower estimate of Theranos’ value.\u003c/p>\n\u003cp>FORBES spoke to a dozen venture capitalists, analysts and industry experts and concluded that a more realistic value for Theranos is $800 million, rather than $9 billion.\u003c/p>\u003c/blockquote>\n\u003cp>\u003cstrong>Update Thursday, May 26: \u003c/strong> And now, the lawsuits.\u003c/p>\n\u003cp>On the heels of Theranos \u003ca href=\"http://ww2.kqed.org/futureofyou/2016/05/19/theranos-corrects-tens-of-thousands-of-blood-tests/\">voiding or correcting\u003c/a> tens of thousands of blood tests it performed at its California lab, two suits seeking class action status have been filed in Northern California. The \u003ca href=\"http://fortune.com/2016/05/26/theranos-class-action-lawsuit/\">first suit\u003c/a> was filed Wednesday on behalf of an unidentified Arizona man. The suit accuses the blood-testing company of fraud.\u003c/p>\n\u003cp>Today, a \u003ca href=\"https://cdn2.vox-cdn.com/uploads/chorus_asset/file/6552851/jones-theranos.0.pdf\">second class-action suit\u003c/a> was filed on behalf of a man named Casey Jones. Jones visited a Theranos Wellness Center inside a Phoenix Walgreens in September 2015 to obtain a routine blood panel as well as a test marked \"reproductive health,\" as he was concerned about his ability to impregnate his wife, the suit says. His doctor had spoken highly of Theranos' finger-prick test as being minimally invasive, and Jones was also influenced by heavy media coverage.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"Upon arriving at Walgreens, Mr. Jones' experience differed greatly from what was promoted,\" the lawsuit claims. \"He had several large vials of blood drawn ... the same as what he would have had drawn at any other lab. There was no disclaimer made to Mr. Jones about this apparent change in the blood draw procedure.\"\u003c/p>\n\u003cp>The suit claims Theranos breached its contract with the plaintiff by not drawing blood in the advertised, minimally invasive way. It also recaps the history of Theranos' disastrous government inspection of its lab and claims Theranos failed to maintain its equipment to industry or government standards. The suit also accuses Theranos of deceptive advertising and fraudulent business practices.\u003c/p>\n\u003cp>\"Because of the reported issues with Theranos, Mr. Jones has serious concerns about the lab results he received, including concerns regarding the reliability and accuracy of the tests,\" the suit says.\u003c/p>\n\u003cp>\u003ca href=\"http://www.vanityfair.com/news/2016/05/elizabeth-holmes-theranos-class-action-lawsuit\">The Verge\u003c/a> says Theranos spokeswoman Brooke Buchanan issued the same response to today's lawsuit as she did to yesterday's: “The lawsuit filed today against Theranos is without merit. The company will vigorously defend itself against these claims.”\u003c/p>\n\u003cp>Whether any patients have been truly harmed by decisions they or their doctors made based on inaccurate Theranos results is not yet known. The Wall Street Journal has\u003ca href=\"http://www.wsj.com/articles/theranos-voids-two-years-of-edison-blood-test-results-1463616976\"> reported\u003c/a> that one physician who received a corrected report said she'd unnecessarily sent a patient to the ER based on abnormally high test results.\u003c/p>\n\u003cp>Also of note for Theranos watchers: The Wall Street Journal Wednesday \u003ca href=\"http://www.wsj.com/articles/craving-growth-walgreens-dismissed-its-doubts-about-theranos-1464207285\">recounted the history\u003c/a> of the company's partnership with Walgreens, which allowed for the opening of dozens of Theranos centers inside the drugstore chain's Arizona stores. The story suggests Walgreens, in its eagerness to expand into next-wave health care, did less than due diligence in vetting Theranos.\u003c/p>\n\u003cp>\u003cstrong>Original post: Theranos, From All Angles\u003c/strong>\u003c/p>\n\u003cp>Think fast:\u003c/p>\n\u003cp>Charlize Theron or Scarlett Johannson as Elizabeth Holmes in \"Theranos: The Movie\"?\u003c/p>\n\u003cp>There's a lot of drama here, as business stories go. Is the company going to be definitively exposed as the Enron of biotech startups? Or will it be vindicated as a misunderstood and unfairly persecuted innovator that, well, made a few mistakes.\u003c/p>\n\u003cp>If the former, you get the sense only a talent on a par with \u003ca href=\"http://www.theatlantic.com/magazine/archive/2008/01/the-angriest-man-in-television/306581/\">David Simon's\u003c/a> could coherently dramatize the shortcomings of the multiple institutions implicated in this mess. The story is compelling even without the appearance to date of the most important characters -- real-life patients who may have been harmed by Theranos' \u003ca href=\"http://ww2.kqed.org/futureofyou/2016/05/19/theranos-corrects-tens-of-thousands-of-blood-tests/\">faulty blood tests\u003c/a>.\u003c/p>\n\u003caside class=\"pullquote alignright\">\u003ca href=\"#articles\">\u003cstrong>See below for Theranos analysis from around the Web.\u003c/strong>\u003c/a>\u003c/aside>\n\u003cp>That may not be the case much longer. Last week, we saw the first report of an actual patient impacted by erroneous results issued by Theranos' California lab. The Wall Street Journal, in a \u003ca href=\"http://www.wsj.com/articles/theranos-voids-two-years-of-edison-blood-test-results-1463616976\">story\u003c/a> about thousands of blood tests Theranos now says were incorrect, reported that a physician in the Phoenix area recently received a revised report for a Theranos patient whom the doctor unnecessarily sent to the ER based on abnormally high results.\u003c/p>\n\u003cp>Nick Stockton, who in \u003ca href=\"http://www.wired.com/2016/05/theranos-inching-towards-legal-bull-issh/\">Wired\u003c/a>, Friday, wrote that Theranos \"is really testing the old adage that all press is good press,\" reported the company has left itself vulnerable to all manner of lawsuits:\u003c/p>\n\u003cblockquote>\u003cp>Many people probably made medical decisions based on those two years of voided tests. Or perhaps they wrongfully decided to forgo medical treatment for a misdiagnosed condition. “If Theranos negligently did blood tests, then someone has a right to sue,” says [UC Berkeley law professor Steven] Davidoff-Soloman. “And it looks like it might be a good case.” But so far, he says he has not seen any examples where a person has popped up and said they were adversely affected by the results from a Theranos test. So again, wait and see.\u003c/p>\n\u003cp>As an accredited lab, Theranos was available to patients through Medicare and Medicaid. “Here you have a situation where they were not just deceiving patients, but also the federal government, who is paying for those tests,” says [University of Michigan law professor Adam] Pritchard. “That is something the Department of Justice is going to be very interested in.” The DOJ itself could bring suit. And depending on what that suit entails, class action lawyers could come calling with cases of mass consumer fraud. Nightmare.\u003c/p>\u003c/blockquote>\n\u003cp>\u003cstrong>'Whatever They're Up To, I Can't Figure It Out'\u003c/strong>\u003c/p>\n\u003cp>Dr. Norman Paradis, a professor of medicine at Dartmouth who has consulted for both diagnostic startups and biomed investors, told me recently that several years ago he looked into Theranos at the request of some potential investors. He found nothing that could be assessed.\u003c/p>\n\u003caside class=\"pullquote alignright\">'Their patents — there’s nothing there. There’s nothing you look at and say, ‘Oh, I can build that.''\u003ccite>Dr. Norman Paradis, Geisel School of Medicine, Dartmouth College\u003c/cite>\u003c/aside>\n\u003cp>\"I said whatever they're up to, I can't figure it out. I didn't see it in their patents or regulatory filings. Their patents -- there's nothing there. There's nothing you look at and say, 'Oh I can build that.'\"\u003c/p>\n\u003cp>Paradis says the molecular diagnostics space is not exactly fertile ground for startups to begin with, because of the royalties due companies that have developed the antibodies indicating a particular illness or condition. Because of this, he says, it is unlikely the low-cost tests Theranos offers are breaking even.\u003c/p>\n\u003cp>\"I have seen smart business types look at this model, and they’ve said I can’t see how you make money here.\"\u003c/p>\n\u003cp>Christina Farr, in \u003ca href=\"http://www.fastcompany.com/3059230/the-theranos-scandal-is-just-the-beginning\">Fast Company\u003c/a>, writes that whatever the company's business plan, it seemed to be a nonstarter with the most prestigious biotech investing firms. \"None of the top biotech investors invested in Theranos,\" Farr wrote. \"Five of the best-regarded biotech firms—Venrock, Third Rock Ventures, Polaris, Deerfield, Versant—either didn't meet with Theranos at all or passed on the pitch. The Silicon Valley firms with health care practices, like Google Ventures and Bessemer Venture Partners, weren't swayed, either.\"\u003c/p>\n\u003cp>Dartmouth's Paradis does give the company credit for submitting over 100 tests for FDA approval, even though a \u003ca href=\"http://www.theverge.com/2015/11/17/9750048/ldt-loophole-fda-hearing-theranos-lab-tests\">legal loophole\u003c/a> regarding \"\u003ca href=\"http://www.fda.gov/medicaldevices/productsandmedicalprocedures/invitrodiagnostics/ucm407296.htm\">Laboratory Developed Tests\u003c/a>\" allows it and \u003ca href=\"http://www.theverge.com/science/2015/11/11/9706356/fda-theranos-health-diagnostics-cancer-tests-regulation-loophole-ldt\">other diagnostic startups\u003c/a> to bring these tests to market without doing so. (The FDA plans on issuing its final version of a \u003ca href=\"http://www.fda.gov/downloads/medicaldevices/deviceregulationandguidance/guidancedocuments/ucm416685.pdf\">draft plan\u003c/a> to phase in \u003ca href=\"https://www.genomeweb.com/molecular-diagnostics/fda-finalize-ldt-guidance-amid-uncertainty-number-genetic-tests-impacted\">oversight of LDTS\u003c/a> sometime this year.)\u003c/p>\n\u003cp>\"For Theranos to decide to go the FDA route does show considerable rigor on Theranos’ part,\" Paradis says. \"When they made that decision, people were not doing it that way.\"\u003c/p>\n\u003cp>Soon, we may get another key development in the story, courtesy of the U.S. government. The Centers for Medicare & Medicaid Services is still mulling whether to revoke the license of Theranos' California lab, and whether to suspend Elizabeth Holmes from involvement in the blood-testing industry for two years. If things go that way, the company still has a couple of administrative appeals available to it. And beyond that, there's always the courts.\u003c/p>\n\u003cp>Meanwhile, Theranos is \u003ca href=\"https://www.statnews.com/2016/05/19/theranos-expansion-plans/\">still hiring\u003c/a>, and Holmes is scheduled to give a presentation at a plenary session of the American Association for Clinical Chemistry's annual meeting in Philadelphia on Aug. 1. \"For the first time, Holmes will present data at a scientific conference that describes Theranos’ technologies, including small sample volume testing and finger-stick collection,\" said the press release.\u003c/p>\n\u003cp>That one should be put on pay-per-view.\u003c/p>\n\u003chr>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003ca id=\"articles\">\u003c/a>Below are some of the most interesting recent takes on the Theranos saga:\u003c/p>\n\u003cul>\n\u003cli>\u003ca href=\"http://www.vanityfair.com/news/2016/05/theranos-silicon-valley-media\">The Secret Culprit in the Theranos Mess\u003c/a> (Nick Bilton, Vanity Fair)\u003cbr>\n\u003cblockquote>\u003cp>(I)f you peel back all of the layers of this tale, at the center you will find one of the more insidious culprits: the Silicon Valley tech press. They embraced Holmes and her start-up with a surprising paucity of questions about the technology she had supposedly developed. They praised her as “the next Steve Jobs,” over and over (the black turtleneck didn’t hurt), until it was no longer a question, but seemingly a fact. At TechCrunch Disrupt, blogger Jon Shieber had his blood drawn onstage as he interviewed her. There were no tough questions about whether Theranos’s technology actually worked; just praise. When it seemed that the tech press had vetted Holmes, she subsequently went mainstream. She got her New Yorker profile, and her face appeared on the cover of T: The New York Times Style Magazine, among others.\u003c/p>\u003c/blockquote>\n\u003c/li>\n\u003cli>\u003ca href=\"http://www.businessinsider.com/why-investor-tim-draper-still-loves-theranos-2016-5\">Blood-testing 'vampires' want to take down Theranos, says investor Tim Draper\u003c/a> (Julie Bort, Business Insider)\u003cbr>\n\u003cblockquote>\u003cp>Troubled blood-testing startup Theranos still has one big, vocal fan: the guy that invested the seed money to get the company started, famed investor Tim Draper. Draper tells Business Insider that of all the startups out there, Theranos is among those he's most excited about. ... Although Draper is not listed as a board member, his take is that all of the questions about Theranos is smoke and mirrors from the established blood-testing industry that doesn't want to see itself overthrown by a one-drop-of-blood-alternative. He says he's seen this struggle many times in his investing career, how telecom companies fought Skype, taxis fought Uber, car companies fought Tesla and so on.\u003c/p>\u003c/blockquote>\n\u003c/li>\n\u003cli>\u003ca href=\"http://www.fastcompany.com/3059230/the-theranos-scandal-is-just-the-beginning\">The Theranos Scandal Is Just The Beginning\u003c/a> (Christina Farr, Fast Company)\u003cbr>\n\u003cblockquote>\u003cp>(A)fter we find our scapegoats, the problem will not be solved. Until we address all the factors that led to Theranos' rise and its downfall, this will happen again. Launch, hype-cycle, demise. Launch, hype-cycle, demise. Again and again. One the biggest catalysts for this cycle? Dumb money. ...The biotech funding process might be flawed, but it works well enough to smell a very large rat.\u003c/p>\u003c/blockquote>\n\u003c/li>\n\u003cli>\u003ca href=\"http://time.com/4299943/the-theranos-downfall-was-inevitable/\">The Theranos Downfall Was Inevitable\u003c/a> (Alice Park, Time)\u003cbr>\n\u003cblockquote>\u003cp>At issue is the secrecy with which Theranos developed and brought to market the technology and its proprietary blood-testing process from day one. Theranos did not share with outside scientists which machines the company used to perform its tests, and they wouldn’t then reveal how its technology differed from the microfluidics that other companies were using to perform similar—though less extensive—assays as Theranos’. Nor did they publish in any peer-reviewed journal any research that proved the effectiveness of their product. To do so, Holmes said, would make them lose their competitive advantage of being the first to offer such tests. When Dr. Eric Topol, director of the Scripps Translational Science Institute, had his blood drawn and tested using the system, he says, “I wasn’t allowed to see the equipment, wasn’t allowed to go near it.”\u003c/p>\u003c/blockquote>\n\u003c/li>\n\u003cli>\u003ca href=\"http://www.wsj.com/articles/from-lending-club-to-theranos-the-limits-of-disruption-1463161745\">From LendingClub to Theranos, the Limits of Disruption\u003c/a> (Justin Lahart, The Wall Street Journal)\u003cbr>\n\u003cblockquote>\u003cp>(E)arly critics of Theranos complained the company had published little data in peer-reviewed journals that would have helped provide insight into the quality of its tests. But innovators often see ignoring criticism as a feature, says University of Toronto economist Joshua Gans, author of a recent book on disruption. That is particularly true when the criticism comes from incumbents who, as ousted Zenefits chief Parker Conrad once complained, often cry foul and look to regulators for protection. The problem is that while critics may be protecting turf, there also may be some truth to what they say. Indeed, the norms incumbents adhere to, and the rules they play by, are often there for reasons that go beyond protecting their moats. That’s particularly true of many old-line industries, such as banking, insurance brokers and medicine, that seem ripe for new entrants.\u003c/p>\u003c/blockquote>\n\u003c/li>\n\u003cli>\u003ca href=\"http://ww2.kqed.org/futureofyou/2016/04/25/analysis-why-medical-lab-experts-were-always-skeptical-of-theranos/\">Analysis: Why Medical Lab Experts Were Always Skeptical of Theranos\u003c/a> (Norman A. Paradis, The Conversation)\u003cbr>\n\u003cblockquote>\u003cp>The vast majority of FDA-approved medically important laboratory tests are based on blood taken from a vein, not from the finger. ... To understand why that matters, let’s start with some simple physiology. The human body can be considered a series of compartments; the concentration of any given molecule in blood or tissue fluid may vary from one compartment to the next. A small molecule, such as glucose, can move easily between these compartments, and any bodily fluid can generally be used to test its concentration. This is why testing blood sugar with a finger prick works. But large, medically important molecules like proteins and lipids are not always found in uniform concentrations throughout the body. The composition of blood from finger pricks from the same person can vary, a problem that doesn’t happen in blood taken from a vein. When you lance a fingertip, you get both blood and tissue fluid, and this means that the concentration of molecules may be different than if the blood sample comes from a vein.\u003c/p>\u003c/blockquote>\n\u003c/li>\n\u003cli>\u003ca href=\"http://fivethirtyeight.com/features/theranos-is-wrong-we-dont-need-more-blood-tests/\">Theranos is Wrong: We Don't Need More Blood Tests\u003c/a> (Katherine Hobson, FiveThirtyEight)\u003cbr>\n\u003cblockquote>\u003cp>Much of the debate over the last few months has been about whether Theranos’s technology can actually do what the company has said it can. But there’s a dubious assumption at the heart of Theranos, arguably just as damning as the questions about its technology. Theranos wants us to believe that ostensibly healthy people can get healthier by having more tests. But the science suggests that is far from true.\u003c/p>\u003c/blockquote>\n\u003c/li>\n\u003cli>\u003ca href=\"http://www.natlawreview.com/article/theranos-sec-s-pursuit-unicorns-and-taking-reins-internal-controls\">Theranos, the SEC’s Pursuit of Unicorns, and Taking the Reins of Internal Controls\u003c/a> (The National Law Review)\u003cbr>\n\u003cblockquote>\u003cp>Even beyond potential misrepresentation issues, we believe the SEC may also be focused on the adequacy of internal controls at privately-held companies, potentially viewing governance and control problems as contributing factors to other issues. ...(I)n a recent speech addressing issues relating to pre-IPO companies, SEC Chair Mary Jo White noted that the SEC was looking closely at privately-held “unicorns”, even where the investors appeared to be venture capital and private equity funds. She stated that control issues were a major risk factor that could lead to opportunities to misstate financial results: “The risk of distortion and inaccuracy is amplified because start-up companies, even quite mature ones, often have far less robust internal controls and governance procedures than most public companies.”\u003c/p>\u003c/blockquote>\n\u003c/li>\n\u003c/ul>\n\n\u003c/div>\u003c/p>",
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"slug": "amid-intense-isolation-stirrings-of-hope-for-families-with-rarest-genetic-mutations",
"title": "Stirrings of Hope for Families Isolated by Rarest of Genetic Conditions",
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"content": "\u003cp>Shortly after \u003ca href=\"http://milosjourney.com/\" target=\"_blank\" rel=\"noopener\">Milo Lorentzen\u003c/a> was born, nurses whisked him away to the neonatal intensive care unit for low blood sugar and jaundice. An exam then found a cluster of irregularities, including a cleft palate and a hole in his heart.\u003c/p>\n\u003cp>The staff called in a geneticist, who issued a misdiagnosis—the first frustrating episode in what would become years of testing, as Karen Park and Peter Lorentzen searched for a way to help their son.\u003c/p>\n\u003caside class=\"pullquote alignright\">‘You’re the ‘other-other,’ and not just the ‘other.'”\u003ccite>Karen Park, Milo’s mother\u003c/cite>\u003c/aside>\n\u003cp>Five years later, Park and Lorentzen know Milo’s significant developmental delays likely stem from a mutation in a gene called KDM1A. He didn’t inherit that mutation from his parents; it’s new in Milo. And because a mutation in that gene is so rare, little is known about it. There is no treatment.\u003c/p>\n\u003cp>If KDM1A is indeed the culprit, Milo has what’s known as a \u003ca href=\"http://www.ncbi.nlm.nih.gov/books/NBK132145/\" target=\"_blank\" rel=\"noopener\">Mendelian disorder\u003c/a>—a rare condition caused by a genetic mutation, typically in a single gene. There are some 7,000-8,000 known Mendelian conditions, but researchers have found the genetic cause for only half. The rest are identified as Mendelian because they are transmitted from parents to children in ways suggesting they are caused by single genes.\u003c/p>\n\u003cp>In some cases—and researchers say Milo’s appears to be one of them—a new mutation reveals a new condition, previously unidentified.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Families with an unidentified genetic illness are lost in an information desert, isolated by protocols that protect research until published, and by health privacy laws that prevent, for example, a genetics lab from connecting two families with the same mutation.\u003c/p>\n\u003cp>The journey of Milo Lorentzen reveals what \u003ca href=\"https://www.bcm.edu/people/view/christian-schaaf-m-d-ph-d/b251d11c-ffed-11e2-be68-080027880ca6\" target=\"_blank\" rel=\"noopener\">Dr. Christian Schaaf\u003c/a>, an assistant professor at \u003ca href=\"https://www.bcm.edu/\" target=\"_blank\" rel=\"noopener\">Baylor College of Medicine\u003c/a>, says are two major inadequacies in genetic medicine—the absence of support for families with undiagnosed illnesses, and the lack of a clearinghouse where families and researchers can find one another.\u003c/p>\n\u003cp>[contextly_sidebar id=”y6fCjzsdBLr9bsR5jKAH3kyZ56BhiTeO”]“We all worry about the correct diagnosis, and therapy, and management of the disease,” Schaaf says, “but we don’t think enough about the isolation these families feel, about the stress and anxiety that comes with these disorders.”\u003c/p>\n\u003cp>Recently, however, new and cheaper techniques in genetic testing and efforts to connect families to each other and to researchers offer promise of a future less desolate.\u003c/p>\n\u003cp>“There are lots of researchers who might be interested in families with genetic conditions if they knew they existed,” says \u003ca href=\"http://depts.washington.edu/bamshad/\" target=\"_blank\" rel=\"noopener\">Dr. Michael Bamshad\u003c/a>, principle investigator of the \u003ca href=\"http://uwcmg.org/#/\" target=\"_blank\" rel=\"noopener\">University of Washington Center for Mendelian Genomics\u003c/a>.\u003c/p>\n\u003cp>Bamshad is cofounder of \u003ca href=\"https://www.mygene2.org/MyGene2/\">MyGene2\u003c/a>, a website where families, researchers, and clinicians can connect and share information at no cost. The site is a \u003ca href=\"https://www.openscienceprize.org/res/p/finalists/\">finalist\u003c/a> in a National Institutes of Health competition to make scientific information broadly available.\u003c/p>\n\u003cp>\u003cstrong>‘You’re the Other-Other’\u003c/strong>\u003c/p>\n\u003cp>When your child has an undiagnosed genetic disorder, one of life’s hallmarks is a frustrating series of tests yielding no answers.\u003c/p>\n\u003cp>“The first several years of his life was test after test,” says Karen Park, Milo’s mother. “X-rays, MRIs, blood tests, skin biopsies.”\u003c/p>\n\u003cfigure id=\"attachment_174418\" class=\"wp-caption aligncenter\" style=\"max-width: 2048px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/milo-podd-school.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/milo-podd-school.jpg\" alt=\"Milo Lorentzen is learning to read and speak using an alternative language method that incorporates symbols and pictures. He now reads at or above grade level. “He was starting to have behavioral issues until we gave him this method,” says his mother, Karen Park. “Now Milo has a voice.” \" width=\"2048\" height=\"1536\" class=\"size-full wp-image-174418\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/milo-podd-school.jpg 2048w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/milo-podd-school-400x300.jpg 400w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/milo-podd-school-800x600.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/milo-podd-school-768x576.jpg 768w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/milo-podd-school-1180x885.jpg 1180w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/milo-podd-school-1920x1440.jpg 1920w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/milo-podd-school-960x720.jpg 960w\" sizes=\"(max-width: 2048px) 100vw, 2048px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Milo Lorentzen is learning to read and speak using an alternative language method that incorporates symbols and pictures. “He was starting to have behavioral issues until we gave him this method,” says his mother, Karen Park. “Now Milo has a voice.” \u003ccite>(Marissa Miller)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Milo had a range of symptoms: low muscle tone and a body that lacked strength, making him slow to lift his head or push up off his stomach; and delays in mimicking people and expressing himself. To his doctors, these symptoms suggested many possibilities.\u003c/p>\n\u003cp>“It takes forever; it’s very slow,” Park says. “And when things keep coming back negative, you feel like: My child is getting tortured; I’m not getting any insight out of this; I just feel like giving up.”\u003c/p>\n\u003cp>Many rare disorders affect at least enough families to constitute what Park calls a tribe: parent groups, coping tips, research tools, and fundraising walks.\u003c/p>\n\u003cp>But Milo’s parents were on their own.\u003c/p>\n\u003cp>Researchers know of only two other children in the world who have a genetic mutation similar to Milo’s. In fact, KDM1A is known to be resistant to evolutionary change; a mutation is so rare researchers hardly ever see it in any animal species.\u003c/p>\n\u003cp>“You’re the ‘other-other’ and not just the ‘other,’” Park says.\u003c/p>\n\u003cfigure id=\"attachment_174447\" class=\"wp-caption aligncenter\" style=\"max-width: 720px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/Tess-happy-e1464726348263.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-174447\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/Tess-happy-e1464726348263.jpg\" alt=\"Tess Bigelow is six years old and funtions at an 18-month-old level. Recently she walked 100 meters in the Special Olympics.\" width=\"720\" height=\"753\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/Tess-happy-e1464726348263.jpg 720w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/Tess-happy-e1464726348263-400x418.jpg 400w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/Tess-happy-e1464726348263-574x600.jpg 574w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/Tess-happy-e1464726348263-32x32.jpg 32w\" sizes=\"(max-width: 720px) 100vw, 720px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Tess Bigelow is six years old and funtions at an 18-month-old level. Recently she walked 100 meters in the Special Olympics. \u003ccite>(Bo Bigelow)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Bo Bigelow, whose daughter Tess is one of only 10 people in the world known to have a mutation in a gene called USP7, went five years before he knew there was anyone else with a similar mutation.\u003c/p>\n\u003cp>“These days there are ribbons and awareness weeks for so many diseases,” Bigelow says, “but when yours is ultra-rare, you feel completely isolated. You feel like you’re never going to hear another person say, ‘Us too!’ And being connected to other families changes all that.”\u003c/p>\n\u003cp>\u003cstrong>Pinpointing the Problem\u003c/strong>\u003c/p>\n\u003cp>In 2013, Milo’s parents had his genes sequenced with a relatively new technique called exome sequencing, which streamlines the process by looking only at genes that code for proteins, and not all an individual’s DNA. It was then they learned about Milo’s gene mutation.\u003c/p>\n\u003cp>Still, mutations in KD1MA are so rare that just spotting it didn’t give Milo’s parents a diagnosis.\u003c/p>\n\u003cp>Why not?\u003c/p>\n\u003cp>“We don’t know what most of our genes do,” says geneticist Barry Starr.\u003c/p>\n\u003cfigure id=\"attachment_174450\" class=\"wp-caption alignright\" style=\"max-width: 250px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/DNA-1.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-174450\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/DNA-1.jpg\" alt=\"Genes issue instructions to make proteins, which run the functions of our cells. Genes make up 1-2 percent of our DNA.\" width=\"250\" height=\"371\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Genes issue instructions to make proteins, which run the functions of our cells. Genes make up 1-2 percent of our DNA. \u003ccite>(National Institutes of Health)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Genes issue instructions to make proteins that run the functions of a cell. But discovering what any single gene mutation does is complicated.\u003c/p>\n\u003cp>You need to know how the mutation affects the proteins, and how the proteins related to the disease. You also want to know whether the mutation has appeared in other family members who have experienced symptoms.\u003c/p>\n\u003cp>“You’re playing all these games like a detective story,” says Starr, “trying to solve a mystery.”\u003c/p>\n\u003cp>One way to get a diagnosis is by looking at previous research.\u003c/p>\n\u003cp>Dr. Michael Bamshad once found a mutation in a gene called MYLPF in a boy who had no muscles in his foot. Bamshad found a mouse study in which researchers had made a deliberate mutation MYLPF, resulting in a complete lack of skeletal muscle in the rodent. That was enough evidence to conclude the MYLPF gene was involved in the boy’s condition.\u003c/p>\n\u003cp>But sometimes there is no published research.\u003c/p>\n\u003cp>Bigelow says geneticists who told him of Tess’ mutation didn’t know what the USP7 gene did.\u003c/p>\n\u003cp>“We know this is the gene, but we don’t know anything more than that,” says Bigelow.\u003c/p>\n\u003cp>\u003cstrong>Easing the Isolation\u003c/strong>\u003c/p>\n\u003cp>Bigelow put out a beacon to other families who might have the same mutation: \u003ca href=\"http://www.portlandrootsmedia.com/tess-genetic-mystery\" target=\"_blank\" rel=\"noopener\">a website\u003c/a> and social media posts. Remarkably, it took \u003ca href=\"http://ww2.kqed.org/futureofyou/2016/05/10/social-media-uncovers-rare-diagnosis-after-years-of-frustration/\" target=\"_blank\" rel=\"noopener\">less than a day\u003c/a> for a response. Researchers are now examining his daughter’s case, and at their request Bigelow has used his website to find two more families with the same mutation.\u003c/p>\n\u003cp>But it’s a lot slower for families and researchers to search through hundreds of websites and Facebook pages for common ground.\u003c/p>\n\u003cp>\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/My-gene2.png\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-full wp-image-174459\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/My-gene2.png\" alt=\"My gene2\" width=\"627\" height=\"264\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/My-gene2.png 627w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/My-gene2-400x168.png 400w\" sizes=\"(max-width: 627px) 100vw, 627px\">\u003c/a>\u003c/p>\n\u003cp>Now Bigelow and Milo Lorentzen’s parents are registered on MyGene2, where roughly 130 families are seeking information on mutations in more than \u003ca href=\"https://www.mygene2.org/MyGene2/genes\" target=\"_blank\" rel=\"noopener\">100 genes\u003c/a>.\u003c/p>\n\u003cp>Bamshad envisions expanding that to tens of thousands of families.\u003c/p>\n\u003cp>“Our major goal is gene discovery and facilitating clinical diagnosis,” he says. “Very quickly, we could identify hundreds of Mendelian conditions and help thousands of families get a diagnosis for rare diseases.”\u003c/p>\n\u003cp>The main stumbling block is money to pay for outreach, Bamshad says. Tens of thousands of exome sequences are siloed at individual labs and clinics around the country. Because of federal privacy laws, the only people who can share those are the families who had them commissioned.\u003c/p>\n\u003cp>“We see lots of families on Facebook who are searching for a diagnosis,” says geneticist \u003ca href=\"https://depts.washington.edu/genediv/directory/jchong\" target=\"_blank\" rel=\"noopener\">Jessica Chong\u003c/a>, MyGene2 cofounder. “It would take time to go search for them and message each one of them to say, ‘We can help you.’”\u003c/p>\n\u003cfigure id=\"attachment_174559\" class=\"wp-caption aligncenter\" style=\"max-width: 718px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/05/Tess-track-e1464741655230.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-174559\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/05/Tess-track-e1464741655230.jpg\" alt=\"Tess Bigelow stomps it out on the track where she competed in the Special Olympics.\" width=\"718\" height=\"590\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/13/2016/05/Tess-track-e1464741655230.jpg 718w, https://cdn.kqed.org/wp-content/uploads/sites/13/2016/05/Tess-track-e1464741655230-400x329.jpg 400w\" sizes=\"(max-width: 718px) 100vw, 718px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Tess Bigelow stomps it out on the track where she\u003ca href=\"http://www.portlandrootsmedia.com/strongerpodcast/2016/5/4/68-special-is-an-understatement\" target=\"_blank\" rel=\"noopener\"> prepares to compete \u003c/a>in the Special Olympics. \u003ccite>(Bo Bigelow)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Dr. Christian Schaaf, who’s working with Tess Bigelow’s mutation, says it has typically taken 15-20 years from the time a disease gene has been discovered until the first patients enter clinical trials. He’s hoping new sequencing tools and social outreach can shrink that to seven or eight years.\u003c/p>\n\u003cp>Milo’s parents hope that new research will give them more answers. They found a U.S. lab that’s agreed to grow cell lines from Milo’s and his father’s DNA, and another lab in Europe is looking to run studies using the gene-editing tool CRISPR.\u003c/p>\n\u003cp>If the labs can replicate Milo’s mutation and study its effects, perhaps Karen Park and Peter Lorentzen will learn more about how the mutation leads to his disorder. From there, will some lab be willing to look at developing a treatment? They don’t know.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>“It’s all us flying blind and making it up as we go along,” says Park.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Shortly after \u003ca href=\"http://milosjourney.com/\" target=\"_blank\" rel=\"noopener\">Milo Lorentzen\u003c/a> was born, nurses whisked him away to the neonatal intensive care unit for low blood sugar and jaundice. An exam then found a cluster of irregularities, including a cleft palate and a hole in his heart.\u003c/p>\n\u003cp>The staff called in a geneticist, who issued a misdiagnosis—the first frustrating episode in what would become years of testing, as Karen Park and Peter Lorentzen searched for a way to help their son.\u003c/p>\n\u003caside class=\"pullquote alignright\">‘You’re the ‘other-other,’ and not just the ‘other.'”\u003ccite>Karen Park, Milo’s mother\u003c/cite>\u003c/aside>\n\u003cp>Five years later, Park and Lorentzen know Milo’s significant developmental delays likely stem from a mutation in a gene called KDM1A. He didn’t inherit that mutation from his parents; it’s new in Milo. And because a mutation in that gene is so rare, little is known about it. There is no treatment.\u003c/p>\n\u003cp>If KDM1A is indeed the culprit, Milo has what’s known as a \u003ca href=\"http://www.ncbi.nlm.nih.gov/books/NBK132145/\" target=\"_blank\" rel=\"noopener\">Mendelian disorder\u003c/a>—a rare condition caused by a genetic mutation, typically in a single gene. There are some 7,000-8,000 known Mendelian conditions, but researchers have found the genetic cause for only half. The rest are identified as Mendelian because they are transmitted from parents to children in ways suggesting they are caused by single genes.\u003c/p>\n\u003cp>In some cases—and researchers say Milo’s appears to be one of them—a new mutation reveals a new condition, previously unidentified.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Families with an unidentified genetic illness are lost in an information desert, isolated by protocols that protect research until published, and by health privacy laws that prevent, for example, a genetics lab from connecting two families with the same mutation.\u003c/p>\n\u003cp>The journey of Milo Lorentzen reveals what \u003ca href=\"https://www.bcm.edu/people/view/christian-schaaf-m-d-ph-d/b251d11c-ffed-11e2-be68-080027880ca6\" target=\"_blank\" rel=\"noopener\">Dr. Christian Schaaf\u003c/a>, an assistant professor at \u003ca href=\"https://www.bcm.edu/\" target=\"_blank\" rel=\"noopener\">Baylor College of Medicine\u003c/a>, says are two major inadequacies in genetic medicine—the absence of support for families with undiagnosed illnesses, and the lack of a clearinghouse where families and researchers can find one another.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>“We all worry about the correct diagnosis, and therapy, and management of the disease,” Schaaf says, “but we don’t think enough about the isolation these families feel, about the stress and anxiety that comes with these disorders.”\u003c/p>\n\u003cp>Recently, however, new and cheaper techniques in genetic testing and efforts to connect families to each other and to researchers offer promise of a future less desolate.\u003c/p>\n\u003cp>“There are lots of researchers who might be interested in families with genetic conditions if they knew they existed,” says \u003ca href=\"http://depts.washington.edu/bamshad/\" target=\"_blank\" rel=\"noopener\">Dr. Michael Bamshad\u003c/a>, principle investigator of the \u003ca href=\"http://uwcmg.org/#/\" target=\"_blank\" rel=\"noopener\">University of Washington Center for Mendelian Genomics\u003c/a>.\u003c/p>\n\u003cp>Bamshad is cofounder of \u003ca href=\"https://www.mygene2.org/MyGene2/\">MyGene2\u003c/a>, a website where families, researchers, and clinicians can connect and share information at no cost. The site is a \u003ca href=\"https://www.openscienceprize.org/res/p/finalists/\">finalist\u003c/a> in a National Institutes of Health competition to make scientific information broadly available.\u003c/p>\n\u003cp>\u003cstrong>‘You’re the Other-Other’\u003c/strong>\u003c/p>\n\u003cp>When your child has an undiagnosed genetic disorder, one of life’s hallmarks is a frustrating series of tests yielding no answers.\u003c/p>\n\u003cp>“The first several years of his life was test after test,” says Karen Park, Milo’s mother. “X-rays, MRIs, blood tests, skin biopsies.”\u003c/p>\n\u003cfigure id=\"attachment_174418\" class=\"wp-caption aligncenter\" style=\"max-width: 2048px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/milo-podd-school.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/milo-podd-school.jpg\" alt=\"Milo Lorentzen is learning to read and speak using an alternative language method that incorporates symbols and pictures. He now reads at or above grade level. “He was starting to have behavioral issues until we gave him this method,” says his mother, Karen Park. “Now Milo has a voice.” \" width=\"2048\" height=\"1536\" class=\"size-full wp-image-174418\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/milo-podd-school.jpg 2048w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/milo-podd-school-400x300.jpg 400w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/milo-podd-school-800x600.jpg 800w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/milo-podd-school-768x576.jpg 768w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/milo-podd-school-1180x885.jpg 1180w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/milo-podd-school-1920x1440.jpg 1920w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/milo-podd-school-960x720.jpg 960w\" sizes=\"(max-width: 2048px) 100vw, 2048px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Milo Lorentzen is learning to read and speak using an alternative language method that incorporates symbols and pictures. “He was starting to have behavioral issues until we gave him this method,” says his mother, Karen Park. “Now Milo has a voice.” \u003ccite>(Marissa Miller)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Milo had a range of symptoms: low muscle tone and a body that lacked strength, making him slow to lift his head or push up off his stomach; and delays in mimicking people and expressing himself. To his doctors, these symptoms suggested many possibilities.\u003c/p>\n\u003cp>“It takes forever; it’s very slow,” Park says. “And when things keep coming back negative, you feel like: My child is getting tortured; I’m not getting any insight out of this; I just feel like giving up.”\u003c/p>\n\u003cp>Many rare disorders affect at least enough families to constitute what Park calls a tribe: parent groups, coping tips, research tools, and fundraising walks.\u003c/p>\n\u003cp>But Milo’s parents were on their own.\u003c/p>\n\u003cp>Researchers know of only two other children in the world who have a genetic mutation similar to Milo’s. In fact, KDM1A is known to be resistant to evolutionary change; a mutation is so rare researchers hardly ever see it in any animal species.\u003c/p>\n\u003cp>“You’re the ‘other-other’ and not just the ‘other,’” Park says.\u003c/p>\n\u003cfigure id=\"attachment_174447\" class=\"wp-caption aligncenter\" style=\"max-width: 720px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/Tess-happy-e1464726348263.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-174447\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/Tess-happy-e1464726348263.jpg\" alt=\"Tess Bigelow is six years old and funtions at an 18-month-old level. Recently she walked 100 meters in the Special Olympics.\" width=\"720\" height=\"753\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/Tess-happy-e1464726348263.jpg 720w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/Tess-happy-e1464726348263-400x418.jpg 400w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/Tess-happy-e1464726348263-574x600.jpg 574w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/Tess-happy-e1464726348263-32x32.jpg 32w\" sizes=\"(max-width: 720px) 100vw, 720px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Tess Bigelow is six years old and funtions at an 18-month-old level. Recently she walked 100 meters in the Special Olympics. \u003ccite>(Bo Bigelow)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Bo Bigelow, whose daughter Tess is one of only 10 people in the world known to have a mutation in a gene called USP7, went five years before he knew there was anyone else with a similar mutation.\u003c/p>\n\u003cp>“These days there are ribbons and awareness weeks for so many diseases,” Bigelow says, “but when yours is ultra-rare, you feel completely isolated. You feel like you’re never going to hear another person say, ‘Us too!’ And being connected to other families changes all that.”\u003c/p>\n\u003cp>\u003cstrong>Pinpointing the Problem\u003c/strong>\u003c/p>\n\u003cp>In 2013, Milo’s parents had his genes sequenced with a relatively new technique called exome sequencing, which streamlines the process by looking only at genes that code for proteins, and not all an individual’s DNA. It was then they learned about Milo’s gene mutation.\u003c/p>\n\u003cp>Still, mutations in KD1MA are so rare that just spotting it didn’t give Milo’s parents a diagnosis.\u003c/p>\n\u003cp>Why not?\u003c/p>\n\u003cp>“We don’t know what most of our genes do,” says geneticist Barry Starr.\u003c/p>\n\u003cfigure id=\"attachment_174450\" class=\"wp-caption alignright\" style=\"max-width: 250px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/DNA-1.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-174450\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/DNA-1.jpg\" alt=\"Genes issue instructions to make proteins, which run the functions of our cells. Genes make up 1-2 percent of our DNA.\" width=\"250\" height=\"371\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Genes issue instructions to make proteins, which run the functions of our cells. Genes make up 1-2 percent of our DNA. \u003ccite>(National Institutes of Health)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Genes issue instructions to make proteins that run the functions of a cell. But discovering what any single gene mutation does is complicated.\u003c/p>\n\u003cp>You need to know how the mutation affects the proteins, and how the proteins related to the disease. You also want to know whether the mutation has appeared in other family members who have experienced symptoms.\u003c/p>\n\u003cp>“You’re playing all these games like a detective story,” says Starr, “trying to solve a mystery.”\u003c/p>\n\u003cp>One way to get a diagnosis is by looking at previous research.\u003c/p>\n\u003cp>Dr. Michael Bamshad once found a mutation in a gene called MYLPF in a boy who had no muscles in his foot. Bamshad found a mouse study in which researchers had made a deliberate mutation MYLPF, resulting in a complete lack of skeletal muscle in the rodent. That was enough evidence to conclude the MYLPF gene was involved in the boy’s condition.\u003c/p>\n\u003cp>But sometimes there is no published research.\u003c/p>\n\u003cp>Bigelow says geneticists who told him of Tess’ mutation didn’t know what the USP7 gene did.\u003c/p>\n\u003cp>“We know this is the gene, but we don’t know anything more than that,” says Bigelow.\u003c/p>\n\u003cp>\u003cstrong>Easing the Isolation\u003c/strong>\u003c/p>\n\u003cp>Bigelow put out a beacon to other families who might have the same mutation: \u003ca href=\"http://www.portlandrootsmedia.com/tess-genetic-mystery\" target=\"_blank\" rel=\"noopener\">a website\u003c/a> and social media posts. Remarkably, it took \u003ca href=\"http://ww2.kqed.org/futureofyou/2016/05/10/social-media-uncovers-rare-diagnosis-after-years-of-frustration/\" target=\"_blank\" rel=\"noopener\">less than a day\u003c/a> for a response. Researchers are now examining his daughter’s case, and at their request Bigelow has used his website to find two more families with the same mutation.\u003c/p>\n\u003cp>But it’s a lot slower for families and researchers to search through hundreds of websites and Facebook pages for common ground.\u003c/p>\n\u003cp>\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/My-gene2.png\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-full wp-image-174459\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2017/05/My-gene2.png\" alt=\"My gene2\" width=\"627\" height=\"264\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/My-gene2.png 627w, https://cdn.kqed.org/wp-content/uploads/sites/13/2017/05/My-gene2-400x168.png 400w\" sizes=\"(max-width: 627px) 100vw, 627px\">\u003c/a>\u003c/p>\n\u003cp>Now Bigelow and Milo Lorentzen’s parents are registered on MyGene2, where roughly 130 families are seeking information on mutations in more than \u003ca href=\"https://www.mygene2.org/MyGene2/genes\" target=\"_blank\" rel=\"noopener\">100 genes\u003c/a>.\u003c/p>\n\u003cp>Bamshad envisions expanding that to tens of thousands of families.\u003c/p>\n\u003cp>“Our major goal is gene discovery and facilitating clinical diagnosis,” he says. “Very quickly, we could identify hundreds of Mendelian conditions and help thousands of families get a diagnosis for rare diseases.”\u003c/p>\n\u003cp>The main stumbling block is money to pay for outreach, Bamshad says. Tens of thousands of exome sequences are siloed at individual labs and clinics around the country. Because of federal privacy laws, the only people who can share those are the families who had them commissioned.\u003c/p>\n\u003cp>“We see lots of families on Facebook who are searching for a diagnosis,” says geneticist \u003ca href=\"https://depts.washington.edu/genediv/directory/jchong\" target=\"_blank\" rel=\"noopener\">Jessica Chong\u003c/a>, MyGene2 cofounder. “It would take time to go search for them and message each one of them to say, ‘We can help you.’”\u003c/p>\n\u003cfigure id=\"attachment_174559\" class=\"wp-caption aligncenter\" style=\"max-width: 718px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/05/Tess-track-e1464741655230.jpg\">\u003cimg loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-174559\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/05/Tess-track-e1464741655230.jpg\" alt=\"Tess Bigelow stomps it out on the track where she competed in the Special Olympics.\" width=\"718\" height=\"590\" srcset=\"https://cdn.kqed.org/wp-content/uploads/sites/13/2016/05/Tess-track-e1464741655230.jpg 718w, https://cdn.kqed.org/wp-content/uploads/sites/13/2016/05/Tess-track-e1464741655230-400x329.jpg 400w\" sizes=\"(max-width: 718px) 100vw, 718px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Tess Bigelow stomps it out on the track where she\u003ca href=\"http://www.portlandrootsmedia.com/strongerpodcast/2016/5/4/68-special-is-an-understatement\" target=\"_blank\" rel=\"noopener\"> prepares to compete \u003c/a>in the Special Olympics. \u003ccite>(Bo Bigelow)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Dr. Christian Schaaf, who’s working with Tess Bigelow’s mutation, says it has typically taken 15-20 years from the time a disease gene has been discovered until the first patients enter clinical trials. He’s hoping new sequencing tools and social outreach can shrink that to seven or eight years.\u003c/p>\n\u003cp>Milo’s parents hope that new research will give them more answers. They found a U.S. lab that’s agreed to grow cell lines from Milo’s and his father’s DNA, and another lab in Europe is looking to run studies using the gene-editing tool CRISPR.\u003c/p>\n\u003cp>If the labs can replicate Milo’s mutation and study its effects, perhaps Karen Park and Peter Lorentzen will learn more about how the mutation leads to his disorder. From there, will some lab be willing to look at developing a treatment? They don’t know.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“It’s all us flying blind and making it up as we go along,” says Park.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>Stanford Medicine is holding its fourth Big Data in Biomedicine Conference today and Thursday. From the website: \"Now in its fourth year, the event provides a forum for experts to discuss ways to use large-scale data analysis and technology to improve human health. This year’s event will include a focus on Stanford Medicine’s work in precision health\"\u003c/p>\n\u003cp>Here's the \u003ca href=\"http://scopeblog.stanford.edu/2016/05/25/stanfords-big-data-in-biomedicine-conference-begins-today/\" target=\"_blank\">schedule of speakers\u003c/a>. Dr. Robert Califf, head of the FDA, will speak at 4:15 p.m. today. Tomorrow's schedule includes a panel discussion on digital health and technology featuring a partner with Google Ventures, among others.\u003c/p>\n\u003cp>Click on the photo and scroll down to watch live.\u003c/p>\n\u003cp>\u003ca href=\"http://bigdata.stanford.edu/\">\u003cimg class=\"aligncenter size-full wp-image-170418\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/05/Screen-shot-2016-05-25-at-11.06.17-AM.png\" alt=\"Screen shot 2016-05-25 at 11.06.17 AM\" width=\"780\" height=\"574\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/05/Screen-shot-2016-05-25-at-11.06.17-AM.png 780w, https://ww2.kqed.org/app/uploads/sites/13/2016/05/Screen-shot-2016-05-25-at-11.06.17-AM-400x294.png 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/05/Screen-shot-2016-05-25-at-11.06.17-AM-768x565.png 768w\" sizes=\"(max-width: 780px) 100vw, 780px\">\u003c/a>\u003c/p>\n\u003cp>You can also follow on Twitter:\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>[twitter-timeline id=735537076590936064 username=jbrooksfoy]\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>[twitter-timeline id=735537076590936064 username=jbrooksfoy]\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003c/p>\n[twitter-timeline id=735537076590936064]\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Stanford Medicine is holding its fourth Big Data in Biomedicine Conference today and Thursday. From the website: \"Now in its fourth year, the event provides a forum for experts to discuss ways to use large-scale data analysis and technology to improve human health. This year’s event will include a focus on Stanford Medicine’s work in precision health\"\u003c/p>\n\u003cp>Here's the \u003ca href=\"http://scopeblog.stanford.edu/2016/05/25/stanfords-big-data-in-biomedicine-conference-begins-today/\" target=\"_blank\">schedule of speakers\u003c/a>. Dr. Robert Califf, head of the FDA, will speak at 4:15 p.m. today. Tomorrow's schedule includes a panel discussion on digital health and technology featuring a partner with Google Ventures, among others.\u003c/p>\n\u003cp>Click on the photo and scroll down to watch live.\u003c/p>\n\u003cp>\u003ca href=\"http://bigdata.stanford.edu/\">\u003cimg class=\"aligncenter size-full wp-image-170418\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/05/Screen-shot-2016-05-25-at-11.06.17-AM.png\" alt=\"Screen shot 2016-05-25 at 11.06.17 AM\" width=\"780\" height=\"574\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/05/Screen-shot-2016-05-25-at-11.06.17-AM.png 780w, https://ww2.kqed.org/app/uploads/sites/13/2016/05/Screen-shot-2016-05-25-at-11.06.17-AM-400x294.png 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/05/Screen-shot-2016-05-25-at-11.06.17-AM-768x565.png 768w\" sizes=\"(max-width: 780px) 100vw, 780px\">\u003c/a>\u003c/p>\n\u003cp>You can also follow on Twitter:\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cp>Struggling with long wait times, the Veterans Affairs Health Care System is trying something new: a partnership with the CVS Pharmacy chain \u003ca href=\"http://cvshealth.com/newsroom/press-releases/minuteclinic-announces-first-its-kind-initiative-veterans-affairs-palo-alto\">to offer urgent care\u003c/a> services to more than 65,000 veterans.\u003c/p>\n\u003cp>The experiment begins today at the VA's operations in Palo Alto, Calif.\u003c/p>\n\u003cp>Veterans can visit 14 \u003ca href=\"http://www.cvs.com/minuteclinic/visit/about-us\">CVS MinuteClinics\u003c/a> in the San Francisco Bay Area and Sacramento, where staff will treat them for conditions such as respiratory infections, order lab tests and prescribe medications which can be filled at CVS pharmacies.\u003c/p>\n\u003cp>The care will be free for veterans, and the VA will reimburse CVS for the treatment and medications. Whether the partnership will spread to other VA locales isn't yet clear.\u003c/p>\n\u003cp>The collaboration comes amid renewed scrutiny of the nation's troubled VA health system, which has tried without much success to improve long wait times for veterans needing health care.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Despite a $10 billion program called Veterans Choice that allows veterans to receive care outside the closed VA system, vets nationwide wait for an appointment even longer than they did before the program started in 2014, according to a \u003ca href=\"http://www.gao.gov/assets/680/675867.pdf\">federal audit\u003c/a>.\u003c/p>\n\u003cp>The MinuteClinic partnership isn't part of the Veterans Choice program.\u003c/p>\n\u003cp>\"The concern has always been, how do we make sure veterans get the care they need in a timely way and in a way that works for the veteran?\" said \u003ca href=\"http://www.ptsd.va.gov/professional/continuing_ed/presenters/ezeji-okoye-md.asp\">Dr. Stephen Ezeji-Okoye\u003c/a>, the Palo Alto VA's deputy chief of staff. The deal indicates that the VA is willing to try outside partnerships to meet veterans' needs, he said. \"We want to have not just timely access but geographic access to care.\"\u003c/p>\n\u003cp>Sarah Russell, the Palo Alto VA's chief medical informatics officer, came up with the idea, said Ezeji-Okoye.\u003c/p>\n\u003cp>The VA will integrate MinuteClinics' patient records with its own electronic health records to provide consistency of care, Ezeji-Okoye said.\u003c/p>\n\u003cp>The Palo Alto VA fares better than some other facilities nationwide in providing timely care to veterans, \u003ca href=\"http://www.va.gov/HEALTH/docs/DR45_052016_Pending_and_EWL_Biweekly_Desired_Date_Division.pdf\">according to VA data\u003c/a>, and Ezeji-Okoye said most patients with urgent care needs are seen quickly.\u003c/p>\n\u003cp>But the system was so busy in the past year that \u003ca href=\"http://www.va.gov/HEALTH/docs/DR45_052016_Pending_and_EWL_Biweekly_Desired_Date_Division.pdf\">about 11 percent\u003c/a> of appointments at its network of hospitals and clinics – which stretch south from Sonora to Monterey – couldn't be scheduled within 30 or fewer days, which is considered an acceptable time frame, \u003ca href=\"http://www.va.gov/HEALTH/docs/DR45_052016_Pending_and_EWL_Biweekly_Desired_Date_Division.pdf\">VA data show\u003c/a>. That includes appointments that would require urgent care.\u003c/p>\n\u003cp>More than 5,000 appointments systemwide were scheduled more than 30 days out, but each hospital and clinic's performance varied widely. At a Fremont clinic, less than 2 percent of appointment requests couldn't be scheduled within 30 days. At the VA's rural Modesto clinic, by contrast, more than 17 percent of requests weren't scheduled within 30 days.\u003c/p>\n\u003cp>Once the MinuteClinic operation is well underway, Ezeji-Okoye anticipates that between 10 and 15 veterans – from among the estimated 150 who call the Palo Alto VA's advice nurse hotline daily – will be treated at the retail clinics on any given day.\u003c/p>\n\u003cp>About 95,000 veterans are eligible to use the Palo Alto system, one of the VA's largest in the Western United States. About 65,000 use it every year.\u003c/p>\n\u003cp>The $330,000 pilot project will be evaluated after one year. CVS' MinuteClinic president, Dr. Andrew Sussman, hopes it can be rolled out nationally if it succeeds. CVS is by far the biggest player in retail pharmacy clinics, operating 1,135 of them in 35 states.\u003c/p>\n\u003cp>\"We'd love to have that opportunity to expand after we go through this phase,\" Sussman said. \"We're well-suited to help because of our large footprint and ability to see people on a quick basis.\"\u003c/p>\n\u003cp>It is unclear, however, what the VA's nationwide plans are. The Veterans Health Administration office didn't respond to Kaiser Health News' request for comment.\u003c/p>\n\u003cp>Blake Schindler, a retired Army major who lives in Santa Clara near one of the participating MinuteClinics, was intrigued, but cautious about the idea. He counts himself lucky, because unlike some other veterans, he has access to the U.S. military's TRICARE health insurance program for active and some retired service members.\u003c/p>\n\u003cp>\"It could make a big difference, but how much access are the veterans going to have? That was the big problem with the Veterans Choice program; it didn't end up the way it was supposed to,\" said Schindler, 58.\u003c/p>\n\u003cp>\"I'm always hopeful when I hear about these things; I keep an open mind until I have experience with it,\" he added.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>This story was produced by \u003ca href=\"http://khn.org/\">Kaiser Health News\u003c/a>, which publishes California Healthline, a service of the California Health Care Foundation. You can follow Barbara Feder Ostrov on Twitter:\u003c/em> \u003ca href=\"https://twitter.com/barbfederostrov\">@barbfederostrov\u003c/a>.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 Kaiser Health News. 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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Despite a $10 billion program called Veterans Choice that allows veterans to receive care outside the closed VA system, vets nationwide wait for an appointment even longer than they did before the program started in 2014, according to a \u003ca href=\"http://www.gao.gov/assets/680/675867.pdf\">federal audit\u003c/a>.\u003c/p>\n\u003cp>The MinuteClinic partnership isn't part of the Veterans Choice program.\u003c/p>\n\u003cp>\"The concern has always been, how do we make sure veterans get the care they need in a timely way and in a way that works for the veteran?\" said \u003ca href=\"http://www.ptsd.va.gov/professional/continuing_ed/presenters/ezeji-okoye-md.asp\">Dr. Stephen Ezeji-Okoye\u003c/a>, the Palo Alto VA's deputy chief of staff. 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That includes appointments that would require urgent care.\u003c/p>\n\u003cp>More than 5,000 appointments systemwide were scheduled more than 30 days out, but each hospital and clinic's performance varied widely. At a Fremont clinic, less than 2 percent of appointment requests couldn't be scheduled within 30 days. At the VA's rural Modesto clinic, by contrast, more than 17 percent of requests weren't scheduled within 30 days.\u003c/p>\n\u003cp>Once the MinuteClinic operation is well underway, Ezeji-Okoye anticipates that between 10 and 15 veterans – from among the estimated 150 who call the Palo Alto VA's advice nurse hotline daily – will be treated at the retail clinics on any given day.\u003c/p>\n\u003cp>About 95,000 veterans are eligible to use the Palo Alto system, one of the VA's largest in the Western United States. About 65,000 use it every year.\u003c/p>\n\u003cp>The $330,000 pilot project will be evaluated after one year. 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"content": "\u003cp>The Wall Street Journal reported last night that the company has told its regulator, the Centers for Medicare & Medicaid Services, that it has \u003ca href=\"http://www.wsj.com/articles/theranos-voids-two-years-of-edison-blood-test-results-1463616976\" target=\"_blank\">voided tens of thousands\u003c/a> -- two years worth -- of patient blood test results. The tests were run on both the company's proprietary Edison machines and conventional testing equipment, the paper said. Some results were thrown out and some revised.\u003c/p>\n\u003cp>The Journal, which owns this story in a big way, cited its usual source: \"a person familiar with the matter.\" Forcing Theranos to issue its usual confirmation, plus this statement:\u003c/p>\n\u003caside class=\"pullquote alignright\">One physician received a corrected report for a patient who was unnecessarily sent to the ER based on erroneous test results, The Wall Street Journal said.\u003c/aside>\n\u003cp>\"Excellence in quality and patient safety is our top priority and we’ve taken comprehensive corrective measures to address the issues CMS raised in their observations,\" Theranos spokesperson Brooke Buchanan said in an email to KQED. \"As these matters are currently under review, we have no further comment at this time.\"\u003c/p>\n\u003cp>If you've been following this story -- which has unfolded like some sort of Silicon Valley morality tale -- you know that Theranos made a splash with investors and the media by claiming it was going to remake the diagnostic testing industry with more efficient and cheaper blood tests. The company said it could sample just a finger-prick's worth of blood, collected in a device it called a \"nanotainer;\" that small amount of blood, the company claimed, was enough to run a host of tests. The FDA, however, approved the process for just one of those tests, and the company collects samples for all others the traditional way -- from a patient's vein.\u003c/p>\n\u003cp>In March, The Wall Street Journal reported Theranos had run tests measuring blood-clotting time on 81 patients despite erratic results from quality-control checks. Around the time the story came out, Theranos released a statement saying it had contacted any patients potentially affected by inaccurate tests.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“We have conducted assessments to identify any patients affected or having the potential to be affected by the issues identified by CMS, and we have no reason to believe that these issues have affected patients’ health,\" said Theranos’ Newark, California lab director, Dr. Kingshuk Das, in a \u003ca href=\"https://www.theranos.com/news/posts/statement-regarding-newark-california-lab-survey\">statement\u003c/a>.\u003c/p>\n\u003cp>Apparently, Theranos has expanded that group of patients. From the Journal:\u003c/p>\n\u003cblockquote>\u003cp>[The corrections mean] some patients received erroneous results that might have thrown off health decisions made with their doctors. ...\u003c/p>\n\u003cp>Several physician practices in the Phoenix area confirmed receiving corrected test reports from Theranos in recent weeks. ...\u003c/p>\n\u003cp>There have been massive recalls of single tests in the past, but I’m not aware of one where a company recalled the entirety of the results from its testing platform,” said Geoffrey Baird, associate professor in the department of laboratory medicine at the University of Washington in Seattle. “I believe that’s unprecedented.”\u003c/p>\u003c/blockquote>\n\u003cp>One Phoenix-area physician received a corrected report for a patient who was unnecessarily sent to the ER based on the original test results, the paper said.\u003c/p>\n\u003cp>These revised or voided tests may or may not satisfy CMS, which has been weighing whether to drop the hammer on Theranos since March, when the agency informed the company it had not submitted credible evidence of correcting serious deficiencies at its Newark, California lab. Those deficiencies, which CMS had uncovered during an inspection, were potentially life-threatening to patients, CMS said.\u003c/p>\n\u003cp>Among the penalties CMS threatened: revoking the lab's federal license to operate and suspending Theranos founder and CEO Elizabeth Holmes from involvement in the blood-testing industry for two years. CMS also named president and COO Sunny Balwani as subject to suspension, but Balwani last week announced his departure from the company.\u003c/p>\n\u003cp>At the same time it informed Theranos of potential penalties, CMS gave the company one last chance to submit additional proof of its compliance with regulations. Theranos responsed to CMS with additional information, and there's been no word from CMS since that story broke in April.\u003c/p>\n\u003cp>If CMS declines to accept Theranos' filing as valid proof of compliance, the company will still have options for administrative appeal. So it's possible the final resolution of the case may not come for months.\u003c/p>\n\u003cp>But even if Theranos manages to avoid sanctions from CMS, it still faces investigations by both the SEC and the U.S. Attorney’s Office for the Northern District of California. It also faces what many assume will be the end of its \u003ca href=\"http://www.nytimes.com/2016/04/22/business/a-once-avid-ally-walgreens-is-struggling-to-shake-off-theranos.html?_r=0\">high-profile deal\u003c/a> with the Walgreens Boots Alliance, which put dozens of Theranos \"Wellness Centers\" in Walgreens stores in Arizona, giving the secretive company and its unproven technology a needed dose of credibility.\u003c/p>\n\u003cp>That has now been wiped out by the one-two punch of the Journal's investigative reports and the failed federal inspection. Last October, the Journal reported allegations by Theranos employees that the company may have violated reporting rules related to proficiency tests run on Edison.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Theranos' Buchanan says federal regulators have issued no findings related to allegations of cheating on proficiency testing or manipulating data. The struggling company recently added a group of doctors and medical scientists to its advisory board to comb through data and help Theranos publish its results publicly.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>The Wall Street Journal reported last night that the company has told its regulator, the Centers for Medicare & Medicaid Services, that it has \u003ca href=\"http://www.wsj.com/articles/theranos-voids-two-years-of-edison-blood-test-results-1463616976\" target=\"_blank\">voided tens of thousands\u003c/a> -- two years worth -- of patient blood test results. The tests were run on both the company's proprietary Edison machines and conventional testing equipment, the paper said. Some results were thrown out and some revised.\u003c/p>\n\u003cp>The Journal, which owns this story in a big way, cited its usual source: \"a person familiar with the matter.\" Forcing Theranos to issue its usual confirmation, plus this statement:\u003c/p>\n\u003caside class=\"pullquote alignright\">One physician received a corrected report for a patient who was unnecessarily sent to the ER based on erroneous test results, The Wall Street Journal said.\u003c/aside>\n\u003cp>\"Excellence in quality and patient safety is our top priority and we’ve taken comprehensive corrective measures to address the issues CMS raised in their observations,\" Theranos spokesperson Brooke Buchanan said in an email to KQED. \"As these matters are currently under review, we have no further comment at this time.\"\u003c/p>\n\u003cp>If you've been following this story -- which has unfolded like some sort of Silicon Valley morality tale -- you know that Theranos made a splash with investors and the media by claiming it was going to remake the diagnostic testing industry with more efficient and cheaper blood tests. The company said it could sample just a finger-prick's worth of blood, collected in a device it called a \"nanotainer;\" that small amount of blood, the company claimed, was enough to run a host of tests. The FDA, however, approved the process for just one of those tests, and the company collects samples for all others the traditional way -- from a patient's vein.\u003c/p>\n\u003cp>In March, The Wall Street Journal reported Theranos had run tests measuring blood-clotting time on 81 patients despite erratic results from quality-control checks. Around the time the story came out, Theranos released a statement saying it had contacted any patients potentially affected by inaccurate tests.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“We have conducted assessments to identify any patients affected or having the potential to be affected by the issues identified by CMS, and we have no reason to believe that these issues have affected patients’ health,\" said Theranos’ Newark, California lab director, Dr. Kingshuk Das, in a \u003ca href=\"https://www.theranos.com/news/posts/statement-regarding-newark-california-lab-survey\">statement\u003c/a>.\u003c/p>\n\u003cp>Apparently, Theranos has expanded that group of patients. From the Journal:\u003c/p>\n\u003cblockquote>\u003cp>[The corrections mean] some patients received erroneous results that might have thrown off health decisions made with their doctors. ...\u003c/p>\n\u003cp>Several physician practices in the Phoenix area confirmed receiving corrected test reports from Theranos in recent weeks. ...\u003c/p>\n\u003cp>There have been massive recalls of single tests in the past, but I’m not aware of one where a company recalled the entirety of the results from its testing platform,” said Geoffrey Baird, associate professor in the department of laboratory medicine at the University of Washington in Seattle. “I believe that’s unprecedented.”\u003c/p>\u003c/blockquote>\n\u003cp>One Phoenix-area physician received a corrected report for a patient who was unnecessarily sent to the ER based on the original test results, the paper said.\u003c/p>\n\u003cp>These revised or voided tests may or may not satisfy CMS, which has been weighing whether to drop the hammer on Theranos since March, when the agency informed the company it had not submitted credible evidence of correcting serious deficiencies at its Newark, California lab. Those deficiencies, which CMS had uncovered during an inspection, were potentially life-threatening to patients, CMS said.\u003c/p>\n\u003cp>Among the penalties CMS threatened: revoking the lab's federal license to operate and suspending Theranos founder and CEO Elizabeth Holmes from involvement in the blood-testing industry for two years. CMS also named president and COO Sunny Balwani as subject to suspension, but Balwani last week announced his departure from the company.\u003c/p>\n\u003cp>At the same time it informed Theranos of potential penalties, CMS gave the company one last chance to submit additional proof of its compliance with regulations. Theranos responsed to CMS with additional information, and there's been no word from CMS since that story broke in April.\u003c/p>\n\u003cp>If CMS declines to accept Theranos' filing as valid proof of compliance, the company will still have options for administrative appeal. So it's possible the final resolution of the case may not come for months.\u003c/p>\n\u003cp>But even if Theranos manages to avoid sanctions from CMS, it still faces investigations by both the SEC and the U.S. Attorney’s Office for the Northern District of California. It also faces what many assume will be the end of its \u003ca href=\"http://www.nytimes.com/2016/04/22/business/a-once-avid-ally-walgreens-is-struggling-to-shake-off-theranos.html?_r=0\">high-profile deal\u003c/a> with the Walgreens Boots Alliance, which put dozens of Theranos \"Wellness Centers\" in Walgreens stores in Arizona, giving the secretive company and its unproven technology a needed dose of credibility.\u003c/p>\n\u003cp>That has now been wiped out by the one-two punch of the Journal's investigative reports and the failed federal inspection. Last October, the Journal reported allegations by Theranos employees that the company may have violated reporting rules related to proficiency tests run on Edison.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Theranos' Buchanan says federal regulators have issued no findings related to allegations of cheating on proficiency testing or manipulating data. The struggling company recently added a group of doctors and medical scientists to its advisory board to comb through data and help Theranos publish its results publicly.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Scientists Create Part-Human, Part-Animal Embryos",
"title": "Scientists Create Part-Human, Part-Animal Embryos",
"headTitle": "KQED Future of You | KQED Science",
"content": "\u003cp>A handful of scientists around the United States are trying to do something that some people find disturbing: make embryos that are part human, part animal.\u003c/p>\n\u003cp>The researchers hope these embryos, known as chimeras, could eventually help save the lives of people with a wide range of diseases.\u003c/p>\n\u003caside class=\"pullquote alignright\">\"You're getting into unsettling ground that I think is damaging to our sense of humanity.\"\u003ccite>Stuart Newman, a professor of cell biology and anatomy at the New York Medical College.\u003c/cite>\u003c/aside>\n\u003cp>One way would be to use chimera embryos to create better animal models to study how human diseases happen and how they progress.\u003c/p>\n\u003cp>Perhaps the boldest hope is to create farm animals that have human organs that could be transplanted into terminally ill patients.\u003c/p>\n\u003cp>But some scientists and bioethicists worry the creation of these interspecies embryos crosses the line. \"You're getting into unsettling ground that I think is damaging to our sense of humanity,\" says \u003ca href=\"http://www.nymc.edu/faculty/directory/by-name/newman-stuart/\">Stuart Newman\u003c/a>, a professor of cell biology and anatomy at the New York Medical College.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The experiments are so sensitive that the National Institutes of Health has imposed a \u003ca href=\"http://www.npr.org/sections/health-shots/2015/11/06/454693391/should-human-stem-cells-be-used-to-make-partly-human-chimeras\">moratorium\u003c/a> on funding them while officials explore the ethical issues they raise.\u003c/p>\n\u003cp>Nevertheless, a small number of researchers are pursuing the work with private funding. They hope the results will convince the NIH to lift the moratorium.\u003c/p>\n\u003cp>\"We're not trying to make a chimera just because we want to see some kind of monstrous creature,\" says \u003ca href=\"http://animalscience.ucdavis.edu/faculty/ross/\">Pablo Ross\u003c/a>, a reproductive biologist at the University of California, Davis. \"We're doing this for a biomedical purpose.\"\u003c/p>\n\u003cp>The NIH is expected to announce soon how it plans to handle requests for funding.\u003c/p>\n\u003cp>Recently, Ross agreed to let me visit his lab for an unusual look at his research. During the visit, Ross demonstrated how he's trying to create a pancreas that theoretically could be transplanted into a patient with diabetes.\u003c/p>\n\u003cp>The first step involves using new \u003ca href=\"http://www.npr.org/sections/health-shots/2015/12/28/460705645/gene-editing-tool-hailed-as-a-breakthrough-and-it-really-is-one\">gene-editing\u003c/a> techniques to remove the gene pig embryos need to make a pancreas.\u003c/p>\n\u003cp>Working under an elaborate microscope, Ross makes a small hole in the embryo's outer membrane with a laser. Next, he injects a molecule synthesized in the laboratory to home in and delete the pancreas gene inside. (In separate experiments, he's done this to sheep embryos, too.)\u003c/p>\n\u003cp>After the embryos have had their DNA edited this way, Ross creates another hole in the membrane so he can inject \u003ca href=\"http://stemcells.nih.gov/info/basics/pages/basics10.aspx\">human induced pluripotent stem cells\u003c/a>, or \u003ca href=\"http://stemcells.nih.gov/info/basics/pages/basics10.aspx\">iPS\u003c/a> for short, into the pig embryos.\u003c/p>\n\u003cp>Like human embryonic stem cells, iPS cells can turn into any kind of cell or tissue in the body. The researchers' hope is that the human stem cells will take advantage of the void in the embryo to start forming a human pancreas.\u003c/p>\n\u003cp>Because iPS cells can be made from any adult's skin cells, any organs they form would match the patient who needs the transplant, vastly reducing the risk that the body would reject the new organ.\u003c/p>\n\u003cp>But for the embryo to develop and produce an organ, Ross has to put the chimera embryos into the wombs of adult pigs. That involves a surgical procedure, which is performed in a large operating room across the street from Ross's lab.\u003c/p>\n\u003cfigure id=\"attachment_166039\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/05/chimeras-1a-7ce31e2e2827205b2edcbe1cbc21e0c171e77a46-800x600.jpg\" alt=\"Pablo Ross of UC Davis inserts human stem cells into a pig embryo as part of experiments to create chimeric embryos.\" width=\"800\" height=\"600\" class=\"size-medium wp-image-166039\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/05/chimeras-1a-7ce31e2e2827205b2edcbe1cbc21e0c171e77a46-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/05/chimeras-1a-7ce31e2e2827205b2edcbe1cbc21e0c171e77a46-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/05/chimeras-1a-7ce31e2e2827205b2edcbe1cbc21e0c171e77a46-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/05/chimeras-1a-7ce31e2e2827205b2edcbe1cbc21e0c171e77a46-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/05/chimeras-1a-7ce31e2e2827205b2edcbe1cbc21e0c171e77a46-1920x1440.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/05/chimeras-1a-7ce31e2e2827205b2edcbe1cbc21e0c171e77a46-960x720.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Pablo Ross of UC Davis inserts human stem cells into a pig embryo as part of experiments to create chimeric embryos. \u003ccite>(Rob Stein/NPR)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The day Ross opened his lab to me, a surgical team was anesthetizing an adult female pig so surgeons could make an incision to get access to its uterus.\u003c/p>\n\u003cp>Ross then rushed over with a special syringe filled with chimera embryos. He injected 25 embryos into each side of the animal's uterus. The procedure took about an hour. He repeated the process on a second pig.\u003c/p>\n\u003cp>Every time Ross does this, he then waits a few weeks to allow the embryos to develop to their 28th day — a time when primitive structures such as organs start to form.\u003c/p>\n\u003cp>Ross then retrieves the chimeric embryos to dissect them so he can see what the human stem cells are doing inside. He examines whether the human stem cells have started to form a pancreas, and whether they have begun making any other types of tissues.\u003c/p>\n\u003cp>The uncertainty is part of what makes the work so controversial. Ross and other scientists conducting these experiments can't know exactly where the human stem cells will go. Ross hopes they'll only grow a human pancreas. But they could go elsewhere, such as to the brain.\u003c/p>\n\u003cp>\"If you have pigs with partly human brains you would have animals that might actually have consciousness like a human,\" Newman says. \"It might have human-type needs. We don't really know.\"\u003c/p>\n\u003cp>That possibility raises new questions about the morality of using the animals for experimentation. Another concern is that the stem cells could form human sperm and human eggs in the chimeras.\u003c/p>\n\u003cp>\"If a male chimeric pig mated with a female chimeric pig, the result could be a human fetus developing in the uterus of that female chimera,\" Newman says. Another possibility is the animals could give birth to some kind of part-human, part-pig creature.\u003c/p>\n\u003cp>\"One of the concerns that a lot of people have is that there's something sacrosanct about what it means to be human expressed in our DNA,\" says \u003ca href=\"https://sols.asu.edu/people/jason-robert\">Jason Robert\u003c/a>, a bioethicist at Arizona State University. \"And that by inserting that into other animals and giving those other animals potentially some of the capacities of humans that this could be a kind of violation — a kind of, maybe, even a playing God.\"\u003c/p>\n\u003cp>Ross defends what his work. \"I don't consider that we're playing God or even close to that,\" Ross says. \"We're just trying to use the technologies that we have developed to improve peoples' life.\"\u003c/p>\n\u003cp>Still, Ross acknowledges the concerns. So he's moving very carefully, he says. For example, he's only letting the chimera embryos develop for 28 days. At that point, he removes the embryos and dissects them.\u003c/p>\n\u003cp>If he discovers the stem cells are going to the wrong places in the embryos, he says he can take steps to stop that from happening. In addition, he'd make sure adult chimeras are never allowed to mate, he says.\u003c/p>\n\u003cp>\"We're very aware and sensitive to the ethical concerns,\" he says. \"One of the reasons we're doing this research the way we're doing it is because we want to provide scientific information to inform those concerns.\"\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>Ross is working with \u003ca href=\"http://www.salk.edu/scientist/juan-carlos-izpisua-belmonte/\">Juan Carlos Izpisua Belmonte\u003c/a> from the Salk Intitute for Biological Studies in La Jolla, Calif., and \u003ca href=\"https://med.stanford.edu/profiles/hiromitsu-nakauchi\">Hiromitsu Nakauchi \u003c/a>at Stanford University. \u003ca href=\"http://www.stemcell.umn.edu/bio/stem-cell-ins-faculty-staff/daniel-garry\">Daniel Garry\u003c/a> of the University of Minnesota and colleagues are conducting similar work.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=In+Search+For+Cures%2C+Scientists+Create+Embryos+That+Are+Both+Animal+And+Human&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>A handful of scientists around the United States are trying to do something that some people find disturbing: make embryos that are part human, part animal.\u003c/p>\n\u003cp>The researchers hope these embryos, known as chimeras, could eventually help save the lives of people with a wide range of diseases.\u003c/p>\n\u003caside class=\"pullquote alignright\">\"You're getting into unsettling ground that I think is damaging to our sense of humanity.\"\u003ccite>Stuart Newman, a professor of cell biology and anatomy at the New York Medical College.\u003c/cite>\u003c/aside>\n\u003cp>One way would be to use chimera embryos to create better animal models to study how human diseases happen and how they progress.\u003c/p>\n\u003cp>Perhaps the boldest hope is to create farm animals that have human organs that could be transplanted into terminally ill patients.\u003c/p>\n\u003cp>But some scientists and bioethicists worry the creation of these interspecies embryos crosses the line. \"You're getting into unsettling ground that I think is damaging to our sense of humanity,\" says \u003ca href=\"http://www.nymc.edu/faculty/directory/by-name/newman-stuart/\">Stuart Newman\u003c/a>, a professor of cell biology and anatomy at the New York Medical College.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The experiments are so sensitive that the National Institutes of Health has imposed a \u003ca href=\"http://www.npr.org/sections/health-shots/2015/11/06/454693391/should-human-stem-cells-be-used-to-make-partly-human-chimeras\">moratorium\u003c/a> on funding them while officials explore the ethical issues they raise.\u003c/p>\n\u003cp>Nevertheless, a small number of researchers are pursuing the work with private funding. They hope the results will convince the NIH to lift the moratorium.\u003c/p>\n\u003cp>\"We're not trying to make a chimera just because we want to see some kind of monstrous creature,\" says \u003ca href=\"http://animalscience.ucdavis.edu/faculty/ross/\">Pablo Ross\u003c/a>, a reproductive biologist at the University of California, Davis. \"We're doing this for a biomedical purpose.\"\u003c/p>\n\u003cp>The NIH is expected to announce soon how it plans to handle requests for funding.\u003c/p>\n\u003cp>Recently, Ross agreed to let me visit his lab for an unusual look at his research. During the visit, Ross demonstrated how he's trying to create a pancreas that theoretically could be transplanted into a patient with diabetes.\u003c/p>\n\u003cp>The first step involves using new \u003ca href=\"http://www.npr.org/sections/health-shots/2015/12/28/460705645/gene-editing-tool-hailed-as-a-breakthrough-and-it-really-is-one\">gene-editing\u003c/a> techniques to remove the gene pig embryos need to make a pancreas.\u003c/p>\n\u003cp>Working under an elaborate microscope, Ross makes a small hole in the embryo's outer membrane with a laser. Next, he injects a molecule synthesized in the laboratory to home in and delete the pancreas gene inside. (In separate experiments, he's done this to sheep embryos, too.)\u003c/p>\n\u003cp>After the embryos have had their DNA edited this way, Ross creates another hole in the membrane so he can inject \u003ca href=\"http://stemcells.nih.gov/info/basics/pages/basics10.aspx\">human induced pluripotent stem cells\u003c/a>, or \u003ca href=\"http://stemcells.nih.gov/info/basics/pages/basics10.aspx\">iPS\u003c/a> for short, into the pig embryos.\u003c/p>\n\u003cp>Like human embryonic stem cells, iPS cells can turn into any kind of cell or tissue in the body. The researchers' hope is that the human stem cells will take advantage of the void in the embryo to start forming a human pancreas.\u003c/p>\n\u003cp>Because iPS cells can be made from any adult's skin cells, any organs they form would match the patient who needs the transplant, vastly reducing the risk that the body would reject the new organ.\u003c/p>\n\u003cp>But for the embryo to develop and produce an organ, Ross has to put the chimera embryos into the wombs of adult pigs. That involves a surgical procedure, which is performed in a large operating room across the street from Ross's lab.\u003c/p>\n\u003cfigure id=\"attachment_166039\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/05/chimeras-1a-7ce31e2e2827205b2edcbe1cbc21e0c171e77a46-800x600.jpg\" alt=\"Pablo Ross of UC Davis inserts human stem cells into a pig embryo as part of experiments to create chimeric embryos.\" width=\"800\" height=\"600\" class=\"size-medium wp-image-166039\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/05/chimeras-1a-7ce31e2e2827205b2edcbe1cbc21e0c171e77a46-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/05/chimeras-1a-7ce31e2e2827205b2edcbe1cbc21e0c171e77a46-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/05/chimeras-1a-7ce31e2e2827205b2edcbe1cbc21e0c171e77a46-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/05/chimeras-1a-7ce31e2e2827205b2edcbe1cbc21e0c171e77a46-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/05/chimeras-1a-7ce31e2e2827205b2edcbe1cbc21e0c171e77a46-1920x1440.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/05/chimeras-1a-7ce31e2e2827205b2edcbe1cbc21e0c171e77a46-960x720.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Pablo Ross of UC Davis inserts human stem cells into a pig embryo as part of experiments to create chimeric embryos. \u003ccite>(Rob Stein/NPR)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The day Ross opened his lab to me, a surgical team was anesthetizing an adult female pig so surgeons could make an incision to get access to its uterus.\u003c/p>\n\u003cp>Ross then rushed over with a special syringe filled with chimera embryos. He injected 25 embryos into each side of the animal's uterus. The procedure took about an hour. He repeated the process on a second pig.\u003c/p>\n\u003cp>Every time Ross does this, he then waits a few weeks to allow the embryos to develop to their 28th day — a time when primitive structures such as organs start to form.\u003c/p>\n\u003cp>Ross then retrieves the chimeric embryos to dissect them so he can see what the human stem cells are doing inside. He examines whether the human stem cells have started to form a pancreas, and whether they have begun making any other types of tissues.\u003c/p>\n\u003cp>The uncertainty is part of what makes the work so controversial. Ross and other scientists conducting these experiments can't know exactly where the human stem cells will go. Ross hopes they'll only grow a human pancreas. But they could go elsewhere, such as to the brain.\u003c/p>\n\u003cp>\"If you have pigs with partly human brains you would have animals that might actually have consciousness like a human,\" Newman says. \"It might have human-type needs. We don't really know.\"\u003c/p>\n\u003cp>That possibility raises new questions about the morality of using the animals for experimentation. Another concern is that the stem cells could form human sperm and human eggs in the chimeras.\u003c/p>\n\u003cp>\"If a male chimeric pig mated with a female chimeric pig, the result could be a human fetus developing in the uterus of that female chimera,\" Newman says. Another possibility is the animals could give birth to some kind of part-human, part-pig creature.\u003c/p>\n\u003cp>\"One of the concerns that a lot of people have is that there's something sacrosanct about what it means to be human expressed in our DNA,\" says \u003ca href=\"https://sols.asu.edu/people/jason-robert\">Jason Robert\u003c/a>, a bioethicist at Arizona State University. \"And that by inserting that into other animals and giving those other animals potentially some of the capacities of humans that this could be a kind of violation — a kind of, maybe, even a playing God.\"\u003c/p>\n\u003cp>Ross defends what his work. \"I don't consider that we're playing God or even close to that,\" Ross says. \"We're just trying to use the technologies that we have developed to improve peoples' life.\"\u003c/p>\n\u003cp>Still, Ross acknowledges the concerns. So he's moving very carefully, he says. For example, he's only letting the chimera embryos develop for 28 days. At that point, he removes the embryos and dissects them.\u003c/p>\n\u003cp>If he discovers the stem cells are going to the wrong places in the embryos, he says he can take steps to stop that from happening. In addition, he'd make sure adult chimeras are never allowed to mate, he says.\u003c/p>\n\u003cp>\"We're very aware and sensitive to the ethical concerns,\" he says. \"One of the reasons we're doing this research the way we're doing it is because we want to provide scientific information to inform those concerns.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Ross is working with \u003ca href=\"http://www.salk.edu/scientist/juan-carlos-izpisua-belmonte/\">Juan Carlos Izpisua Belmonte\u003c/a> from the Salk Intitute for Biological Studies in La Jolla, Calif., and \u003ca href=\"https://med.stanford.edu/profiles/hiromitsu-nakauchi\">Hiromitsu Nakauchi \u003c/a>at Stanford University. \u003ca href=\"http://www.stemcell.umn.edu/bio/stem-cell-ins-faculty-staff/daniel-garry\">Daniel Garry\u003c/a> of the University of Minnesota and colleagues are conducting similar work.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=In+Search+For+Cures%2C+Scientists+Create+Embryos+That+Are+Both+Animal+And+Human&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>Elizabeth Holmes fit into the Silicon Valley success mold. A young Stanford dropout who left school to pursue her entrepreneurial vision, she founded Theranos and said she would disrupt the world of medicine with easy and inexpensive blood tests.\u003c/p>\n\u003caside class=\"pullquote alignright\">In Silicon Valley, secrecy and raising big money before achieving results are par for the course. Not so in the world of biomed.\u003c/aside>\n\u003cp>But now her company is \u003ca href=\"http://www.npr.org/2016/04/19/474868428/innovative-blood-testing-company-theranos-under-criminal-investigation\">under federal investigation\u003c/a> and extra scrutiny \u003ca href=\"http://www.latimes.com/business/la-fi-theranos-investigations-20160419-story.html\">by federal regulators\u003c/a>. And questions are being raised about whether applying hardware and software business culture to biotechnology is dangerous.\u003c/p>\n\u003cp>Holmes was an alluring figure; young and intense in the kind of way Apple founder Steve Jobs was. Like Jobs, she wore \u003ca href=\"http://www.glamour.com/story/theranos-founder-elizabeth-holmes-career-advice\">only black turtlenecks\u003c/a> because she didn't have time to think about her wardrobe.\u003c/p>\n\u003cp>And of course, there was \u003ca href=\"http://www.tedmed.com/talks/show?id=309114\">the TED talk\u003c/a> in which Holmes painted a picture of a world in which too many people avoided blood tests because of the cost, inconvenience and discomfort of giving so much blood. Sometimes they learned too late about a serious health condition. But, her company — \u003ca href=\"https://www.theranos.com/\">Theranos\u003c/a> — had the solution.\u003c/p>\n\u003cp>\"We've made it possible to run comprehensive laboratory tests from a tiny sample or a few drops of blood that could be taken from a finger,\" she told the audience.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Holmes had a beautiful vision, backed by hundreds of millions of dollars in investment, and \u003ca href=\"https://www.theranos.com/leadership\">a board of big names\u003c/a> like Henry Kissinger and George P. Schulz. The media had a love fest. \u003cem>Time\u003c/em> magazine called Holmes \u003ca href=\"http://time.com/3822734/elizabeth-holmes-2015-time-100/\">one of the 100 most influential people\u003c/a> in the world. She was profiled in \u003ca href=\"http://fortune.com/2014/06/12/theranos-blood-holmes/\">Fortune\u003c/a> and \u003ca href=\"http://www.newyorker.com/magazine/2014/12/15/blood-simpler\">The New Yorker\u003c/a>. Even medical professionals like \u003ca href=\"http://www.businessinsider.com/scientist-skeptical-thranos-blood-test-elizabeth-holmes-2015-6\">Dr. John Ioannidis\u003c/a>, a professor at Stanford University Medical School were intrigued.\u003c/p>\n\u003caside class=\"pullquote alignright\">“This is equivalent to me, being a biomedical researcher, trying to become an architect and build a skyscraper. Would you give me a few billion dollars please?”\u003ccite> Dr. John Ioannidis, Stanford Medical School professor\u003c/cite>\u003c/aside>\n\u003cp>\"My first reaction was, it sounds really brilliant,\" Ioannides says. \"I would like to collaborate with these people and maybe even use their technology in my own studies.\" Studies — that's what medicine and science is built upon.\u003c/p>\n\u003cp>\"So the first thing that I did as a researcher, as a scientist is check the scientific literature,\" says Ioannidis. \"How much do we know about what they do? And I couldn't find even a single paper.\"\u003c/p>\n\u003cp>Then there was the advisory board: big names in politics, not science. And Holmes had no background in medicine. \"This is equivalent to me, being a biomedical researcher, trying to become an architect and build a skyscraper. Would you give me a few billion dollars please?\"\u003c/p>\n\u003cp>Of course, no one would give him a few billion dollars.\u003c/p>\n\u003cp>But in the tech world, maybe they would. Jo-Ellen Pozner, a professor at the University of California, Berkeley Haas School of Business, says some of the greatest companies were built on hype and a big idea.\u003c/p>\n\u003cp>\"Often the product comes after the money, and so the first job is to get the investors to give you the money and that requires that you really sell them on this big idea before it's actually in hand,\" Pozner says.\u003c/p>\n\u003cp>Pozner points to \u003ca href=\"http://www.npr.org/sections/theprotojournalist/2014/01/08/260457752/can-jeff-bezos-save-planet-earth\">Jeff Bezos\u003c/a> and his company Amazon, which started as an online bookseller. \"He called the company Amazon because he wanted it to be the biggest retailer in the world, so he named it after the biggest river in the world,\" she says. \"That projects a certain kind of optimism about where we're going and what we have in mind and what we're able to accomplish.\"\u003c/p>\n\u003cp>Despite many years when Amazon made no profit, Bezos drew investors and in turn he expanded and got more customers.\u003c/p>\n\u003cp>Secrecy is also part of the tech world playbook — no studies needed. Google keeps its search algorithms secret — as a way to keep them out of the hands of competitors.\u003c/p>\n\u003cp>\"So there are so many things going on in our firm and we're not telling you about them and that's part of the allure and the mystique of the organization,\" says Pozner. \"That keeps people excited about what's coming next.\"\u003c/p>\n\u003cp>This is totally contrary to how the medical and biotech fields work — studies are published in journals and reviewed by peers and products require government approval. This may gum up the works of Silicon Valley's fast-paced innovation economy, but it's for a good reason, says Stanford's Ioannidis.\u003c/p>\n\u003cp>\"It's not such a horrible thing if your mobile phone battery dies an hour earlier than it's supposed to,\" he says. \"But if a patient gets given the wrong results and then going down the path of making wrong decisions, that's serious. People can lose their lives.\"\u003c/p>\n\u003cp>As for Theranos and Elizabeth Holmes — the company is \u003ca href=\"http://www.bloomberg.com/news/articles/2016-04-18/theranos-is-under-investigation-by-sec-u-s-attorney-s-office\">facing scrutiny\u003c/a> from the Securities and Exchange Commission and the U.S. Attorney's Office for the Northern District of California. Some Theranos supporters believe in the end Holmes will turn out to be right.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Meanwhile, venture capital dollars going into biotech rose nearly 20 percent between 2014 and 2015. Perhaps this round of funding will come with less hype and more scrutiny.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Biotech%27s+Theranos+Offers+A+Cautionary+Tale+For+Silicon+Valley&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Elizabeth Holmes fit into the Silicon Valley success mold. A young Stanford dropout who left school to pursue her entrepreneurial vision, she founded Theranos and said she would disrupt the world of medicine with easy and inexpensive blood tests.\u003c/p>\n\u003caside class=\"pullquote alignright\">In Silicon Valley, secrecy and raising big money before achieving results are par for the course. Not so in the world of biomed.\u003c/aside>\n\u003cp>But now her company is \u003ca href=\"http://www.npr.org/2016/04/19/474868428/innovative-blood-testing-company-theranos-under-criminal-investigation\">under federal investigation\u003c/a> and extra scrutiny \u003ca href=\"http://www.latimes.com/business/la-fi-theranos-investigations-20160419-story.html\">by federal regulators\u003c/a>. And questions are being raised about whether applying hardware and software business culture to biotechnology is dangerous.\u003c/p>\n\u003cp>Holmes was an alluring figure; young and intense in the kind of way Apple founder Steve Jobs was. Like Jobs, she wore \u003ca href=\"http://www.glamour.com/story/theranos-founder-elizabeth-holmes-career-advice\">only black turtlenecks\u003c/a> because she didn't have time to think about her wardrobe.\u003c/p>\n\u003cp>And of course, there was \u003ca href=\"http://www.tedmed.com/talks/show?id=309114\">the TED talk\u003c/a> in which Holmes painted a picture of a world in which too many people avoided blood tests because of the cost, inconvenience and discomfort of giving so much blood. Sometimes they learned too late about a serious health condition. But, her company — \u003ca href=\"https://www.theranos.com/\">Theranos\u003c/a> — had the solution.\u003c/p>\n\u003cp>\"We've made it possible to run comprehensive laboratory tests from a tiny sample or a few drops of blood that could be taken from a finger,\" she told the audience.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Holmes had a beautiful vision, backed by hundreds of millions of dollars in investment, and \u003ca href=\"https://www.theranos.com/leadership\">a board of big names\u003c/a> like Henry Kissinger and George P. Schulz. The media had a love fest. \u003cem>Time\u003c/em> magazine called Holmes \u003ca href=\"http://time.com/3822734/elizabeth-holmes-2015-time-100/\">one of the 100 most influential people\u003c/a> in the world. She was profiled in \u003ca href=\"http://fortune.com/2014/06/12/theranos-blood-holmes/\">Fortune\u003c/a> and \u003ca href=\"http://www.newyorker.com/magazine/2014/12/15/blood-simpler\">The New Yorker\u003c/a>. Even medical professionals like \u003ca href=\"http://www.businessinsider.com/scientist-skeptical-thranos-blood-test-elizabeth-holmes-2015-6\">Dr. John Ioannidis\u003c/a>, a professor at Stanford University Medical School were intrigued.\u003c/p>\n\u003caside class=\"pullquote alignright\">“This is equivalent to me, being a biomedical researcher, trying to become an architect and build a skyscraper. Would you give me a few billion dollars please?”\u003ccite> Dr. John Ioannidis, Stanford Medical School professor\u003c/cite>\u003c/aside>\n\u003cp>\"My first reaction was, it sounds really brilliant,\" Ioannides says. \"I would like to collaborate with these people and maybe even use their technology in my own studies.\" Studies — that's what medicine and science is built upon.\u003c/p>\n\u003cp>\"So the first thing that I did as a researcher, as a scientist is check the scientific literature,\" says Ioannidis. \"How much do we know about what they do? And I couldn't find even a single paper.\"\u003c/p>\n\u003cp>Then there was the advisory board: big names in politics, not science. And Holmes had no background in medicine. \"This is equivalent to me, being a biomedical researcher, trying to become an architect and build a skyscraper. Would you give me a few billion dollars please?\"\u003c/p>\n\u003cp>Of course, no one would give him a few billion dollars.\u003c/p>\n\u003cp>But in the tech world, maybe they would. Jo-Ellen Pozner, a professor at the University of California, Berkeley Haas School of Business, says some of the greatest companies were built on hype and a big idea.\u003c/p>\n\u003cp>\"Often the product comes after the money, and so the first job is to get the investors to give you the money and that requires that you really sell them on this big idea before it's actually in hand,\" Pozner says.\u003c/p>\n\u003cp>Pozner points to \u003ca href=\"http://www.npr.org/sections/theprotojournalist/2014/01/08/260457752/can-jeff-bezos-save-planet-earth\">Jeff Bezos\u003c/a> and his company Amazon, which started as an online bookseller. \"He called the company Amazon because he wanted it to be the biggest retailer in the world, so he named it after the biggest river in the world,\" she says. \"That projects a certain kind of optimism about where we're going and what we have in mind and what we're able to accomplish.\"\u003c/p>\n\u003cp>Despite many years when Amazon made no profit, Bezos drew investors and in turn he expanded and got more customers.\u003c/p>\n\u003cp>Secrecy is also part of the tech world playbook — no studies needed. Google keeps its search algorithms secret — as a way to keep them out of the hands of competitors.\u003c/p>\n\u003cp>\"So there are so many things going on in our firm and we're not telling you about them and that's part of the allure and the mystique of the organization,\" says Pozner. \"That keeps people excited about what's coming next.\"\u003c/p>\n\u003cp>This is totally contrary to how the medical and biotech fields work — studies are published in journals and reviewed by peers and products require government approval. This may gum up the works of Silicon Valley's fast-paced innovation economy, but it's for a good reason, says Stanford's Ioannidis.\u003c/p>\n\u003cp>\"It's not such a horrible thing if your mobile phone battery dies an hour earlier than it's supposed to,\" he says. \"But if a patient gets given the wrong results and then going down the path of making wrong decisions, that's serious. People can lose their lives.\"\u003c/p>\n\u003cp>As for Theranos and Elizabeth Holmes — the company is \u003ca href=\"http://www.bloomberg.com/news/articles/2016-04-18/theranos-is-under-investigation-by-sec-u-s-attorney-s-office\">facing scrutiny\u003c/a> from the Securities and Exchange Commission and the U.S. Attorney's Office for the Northern District of California. Some Theranos supporters believe in the end Holmes will turn out to be right.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Meanwhile, venture capital dollars going into biotech rose nearly 20 percent between 2014 and 2015. Perhaps this round of funding will come with less hype and more scrutiny.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2016 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Biotech%27s+Theranos+Offers+A+Cautionary+Tale+For+Silicon+Valley&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>One of the most important things a pharmacist does after five or six years of training is make sure you get the correct number of pills in the correct dosage.\u003c/p>\n\u003cp>Now, it seems, robots are better at doing that than people. Even trained pharmacist people. Actually, it's a perfect job for a robot: a repetitive and mundane task.\u003c/p>\n\u003caside class=\"pullquote alignright\">'Automation has led to the ability for us to reinvent ourselves as a profession, and we need to take the challenge.'\u003ccite>Dr. Marilyn Stebbins, UCSF\u003c/cite>\u003c/aside>\n\u003cp>And artificial intelligence has finally matured to the point where doctors trust robots (with human supervision) to do it. For five years now, the UCSF Medical Center has relied on an automated “robot pharmacy” to fill prescriptions, and a fleet of thousands of autonomous bots to deliver them.\u003c/p>\n\u003cp>Rita Jew, director of the UCSF program, says the robots have worked for five years with 100% accuracy.\u003c/p>\n\u003cp>Humans are involved only to stock the medications in the canisters that the robots pluck off a rack, and to grab the packaged and labeled medications the robot spits out and send it on its way.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>And if the meds are going to a patient in the hospital, a human might hand them off to a \u003ca href=\"http://ww2.kqed.org/futureofyou/2016/03/01/hospital-uses-robots-instead-of-people-to-cart-things-around/\" target=\"_blank\">Tug robot\u003c/a> that rolls around the hospital from floor to floor, dropping off prescriptions at each nurse’s station.\u003c/p>\n\u003cp>The job of finding medications and dispensing the right amount for the right patient, is called “pulling” drugs. There used to be seven pharmacy technicians pulling drugs, with three to four pharmacists supervising them. Now, Jew says she needs at most two technicians to interface with the bots, and the other techs were reassigned to work such as collecting medication history\u003c/p>\n\u003cfigure id=\"attachment_121044\" class=\"wp-caption aligncenter\" style=\"max-width: 770px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/03/tug.jpg\">\u003cimg class=\"size-full wp-image-121044\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/03/tug.jpg\" alt=\"A tug enters the kitchen of the UCSF Benioff Children’s Hospital in San Francisco. \" width=\"770\" height=\"514\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/03/tug.jpg 770w, https://ww2.kqed.org/app/uploads/sites/13/2016/03/tug-400x267.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/03/tug-768x513.jpg 768w\" sizes=\"(max-width: 770px) 100vw, 770px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">A tug enters the kitchen of the UCSF Benioff Children’s Hospital in San Francisco. \u003ccite>(Heidi de Marco/KHN)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Robots are faster and more accurate than people—a recent \u003ca href=\"http://www.ajhp.org/content/72/17/1471.abstract\">study\u003c/a> from a medical center in Houston found that in one year their pharmacists made an average of almost five medication errors for every 100,000 prescriptions. That’s not a lot, but it’s a lot more than zero.\u003c/p>\n\u003cp>\u003cstrong>Will Robots Replace Pharmacists?\u003c/strong>\u003c/p>\n\u003cp>This bionic competition has some pharmacists worried about whether humans have a role in the future of their profession. A paper published in the American Journal of Pharmacy Education last year warned of a potential glut of more than 40,000 pharmacy school grads by 2022.\u003c/p>\n\u003cp>“Technology and automation are going to do a whole lot of things that the traditional pharmacist has done,” says Dr. Marilyn Stebbins, a pharmacy professor and vice-chair of clinical innovation at UCSF. “If the pharmacists don’t prove their value outside of their existing roles, automation will win because ultimately it will be cheaper.”\u003c/p>\n\u003cp>That means pharmacists need to carve out new niches robots can’t fill.\u003c/p>\n\u003cp>California lawmakers recently \u003ca href=\"http://www.leginfo.ca.gov/pub/13-14/bill/sen/sb_0451-0500/sb_493_bill_20131001_chaptered.html\" target=\"_blank\">authorized pharmacists\u003c/a> who have certain levels of training and experience to prescribe medications, including nicotine replacements and hormonal birth control, and take a more active role in primary care.\u003c/p>\n\u003cp>[contextly_sidebar id=\"bM52RWQkoiFSagHpIhxBjL4WpsA39bOf\"]This means the person behind the counter at Walgreens would be able to help patients quit smoking, or review their full medical record to make sure they’re getting the best medication for their condition.\u003c/p>\n\u003cp>“It’s kind of a pivot in the role of the pharmacist but it’s up to us to take this opportunity,” says Dr. Lisa Kroon, a clinical pharmacy professor at UCSF.\u003c/p>\n\u003cp>But so far this new role doesn’t come with any extra pay for extra services. The new law doesn’t include regulations to allow pharmacists to be paid for their services. Pharmacists are still reimbursed just for the products they provide. So Stebbins says pharmacists' potential to fill gaps in the healthcare system may remain untapped until there's some way to pay them for it.\u003c/p>\n\u003cp>\u003cstrong>Facing a New Future\u003c/strong>\u003c/p>\n\u003cp>Kroon has been practicing for 20 years, and she says pharmacists have been talking about the “threat” of automation for as long as she can remember. But she says this is the wrong way to think about technology.\u003c/p>\n\u003cp>“Our stand here at our school is if [dispensing medication] is all you want to do, don’t come to this school,” Kroon says.\u003c/p>\n\u003cp>One innovation Stebbins is working on is an app that allows patients to track their blood pressure and other vital signs.\u003c/p>\n\u003cp>The data are then shared with both their doctor and pharmacist—but it’s the pharmacist who would be responsible for checking in with patients, tracking their data, making sure they’re taking their medication and monitoring whether the medication is working.\u003c/p>\n\u003cfigure id=\"attachment_153717\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/04/robotic-pharmacy-main_0.jpg\">\u003cimg class=\"size-medium wp-image-153717\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/04/robotic-pharmacy-main_0-800x533.jpg\" alt=\"Pharmacy resident Oliver Hsu photographs medication expiration dates.\" width=\"800\" height=\"533\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/04/robotic-pharmacy-main_0-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/robotic-pharmacy-main_0-400x267.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/robotic-pharmacy-main_0-768x512.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/robotic-pharmacy-main_0-1180x787.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/robotic-pharmacy-main_0-1920x1280.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/robotic-pharmacy-main_0-960x640.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Pharmacy resident Oliver Hsu photographs medication expiration dates. \u003ccite>(Susan Merrell/UCSF)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“The pharmacist is the ultimate medication manager,” Stebbins says. “That’s what our training is all about.”\u003c/p>\n\u003cp>Stebbins has also helped develop a new automated call service, in which patients get a phone call within the first two days after they leave the hospital, asking if they have questions about their medication. If they do, Stebbins gets a text or email and she or one of her team of pharmacy students can respond to the patient’s concerns.\u003c/p>\n\u003cp>Getting the pharmacist involved sooner through services like this call service, frees up more time for the physician to focus on other aspects of the patient’s recovery.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>“People have to embrace technology, and not fear it,” she says. “The ultimate thing is that automation has led to the ability for us to reinvent ourselves as a profession, and we need to take the challenge.”\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>One of the most important things a pharmacist does after five or six years of training is make sure you get the correct number of pills in the correct dosage.\u003c/p>\n\u003cp>Now, it seems, robots are better at doing that than people. Even trained pharmacist people. Actually, it's a perfect job for a robot: a repetitive and mundane task.\u003c/p>\n\u003caside class=\"pullquote alignright\">'Automation has led to the ability for us to reinvent ourselves as a profession, and we need to take the challenge.'\u003ccite>Dr. Marilyn Stebbins, UCSF\u003c/cite>\u003c/aside>\n\u003cp>And artificial intelligence has finally matured to the point where doctors trust robots (with human supervision) to do it. For five years now, the UCSF Medical Center has relied on an automated “robot pharmacy” to fill prescriptions, and a fleet of thousands of autonomous bots to deliver them.\u003c/p>\n\u003cp>Rita Jew, director of the UCSF program, says the robots have worked for five years with 100% accuracy.\u003c/p>\n\u003cp>Humans are involved only to stock the medications in the canisters that the robots pluck off a rack, and to grab the packaged and labeled medications the robot spits out and send it on its way.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>And if the meds are going to a patient in the hospital, a human might hand them off to a \u003ca href=\"http://ww2.kqed.org/futureofyou/2016/03/01/hospital-uses-robots-instead-of-people-to-cart-things-around/\" target=\"_blank\">Tug robot\u003c/a> that rolls around the hospital from floor to floor, dropping off prescriptions at each nurse’s station.\u003c/p>\n\u003cp>The job of finding medications and dispensing the right amount for the right patient, is called “pulling” drugs. There used to be seven pharmacy technicians pulling drugs, with three to four pharmacists supervising them. Now, Jew says she needs at most two technicians to interface with the bots, and the other techs were reassigned to work such as collecting medication history\u003c/p>\n\u003cfigure id=\"attachment_121044\" class=\"wp-caption aligncenter\" style=\"max-width: 770px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/03/tug.jpg\">\u003cimg class=\"size-full wp-image-121044\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/03/tug.jpg\" alt=\"A tug enters the kitchen of the UCSF Benioff Children’s Hospital in San Francisco. \" width=\"770\" height=\"514\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/03/tug.jpg 770w, https://ww2.kqed.org/app/uploads/sites/13/2016/03/tug-400x267.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/03/tug-768x513.jpg 768w\" sizes=\"(max-width: 770px) 100vw, 770px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">A tug enters the kitchen of the UCSF Benioff Children’s Hospital in San Francisco. \u003ccite>(Heidi de Marco/KHN)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Robots are faster and more accurate than people—a recent \u003ca href=\"http://www.ajhp.org/content/72/17/1471.abstract\">study\u003c/a> from a medical center in Houston found that in one year their pharmacists made an average of almost five medication errors for every 100,000 prescriptions. That’s not a lot, but it’s a lot more than zero.\u003c/p>\n\u003cp>\u003cstrong>Will Robots Replace Pharmacists?\u003c/strong>\u003c/p>\n\u003cp>This bionic competition has some pharmacists worried about whether humans have a role in the future of their profession. A paper published in the American Journal of Pharmacy Education last year warned of a potential glut of more than 40,000 pharmacy school grads by 2022.\u003c/p>\n\u003cp>“Technology and automation are going to do a whole lot of things that the traditional pharmacist has done,” says Dr. Marilyn Stebbins, a pharmacy professor and vice-chair of clinical innovation at UCSF. “If the pharmacists don’t prove their value outside of their existing roles, automation will win because ultimately it will be cheaper.”\u003c/p>\n\u003cp>That means pharmacists need to carve out new niches robots can’t fill.\u003c/p>\n\u003cp>California lawmakers recently \u003ca href=\"http://www.leginfo.ca.gov/pub/13-14/bill/sen/sb_0451-0500/sb_493_bill_20131001_chaptered.html\" target=\"_blank\">authorized pharmacists\u003c/a> who have certain levels of training and experience to prescribe medications, including nicotine replacements and hormonal birth control, and take a more active role in primary care.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>This means the person behind the counter at Walgreens would be able to help patients quit smoking, or review their full medical record to make sure they’re getting the best medication for their condition.\u003c/p>\n\u003cp>“It’s kind of a pivot in the role of the pharmacist but it’s up to us to take this opportunity,” says Dr. Lisa Kroon, a clinical pharmacy professor at UCSF.\u003c/p>\n\u003cp>But so far this new role doesn’t come with any extra pay for extra services. The new law doesn’t include regulations to allow pharmacists to be paid for their services. Pharmacists are still reimbursed just for the products they provide. So Stebbins says pharmacists' potential to fill gaps in the healthcare system may remain untapped until there's some way to pay them for it.\u003c/p>\n\u003cp>\u003cstrong>Facing a New Future\u003c/strong>\u003c/p>\n\u003cp>Kroon has been practicing for 20 years, and she says pharmacists have been talking about the “threat” of automation for as long as she can remember. But she says this is the wrong way to think about technology.\u003c/p>\n\u003cp>“Our stand here at our school is if [dispensing medication] is all you want to do, don’t come to this school,” Kroon says.\u003c/p>\n\u003cp>One innovation Stebbins is working on is an app that allows patients to track their blood pressure and other vital signs.\u003c/p>\n\u003cp>The data are then shared with both their doctor and pharmacist—but it’s the pharmacist who would be responsible for checking in with patients, tracking their data, making sure they’re taking their medication and monitoring whether the medication is working.\u003c/p>\n\u003cfigure id=\"attachment_153717\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/04/robotic-pharmacy-main_0.jpg\">\u003cimg class=\"size-medium wp-image-153717\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/04/robotic-pharmacy-main_0-800x533.jpg\" alt=\"Pharmacy resident Oliver Hsu photographs medication expiration dates.\" width=\"800\" height=\"533\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/04/robotic-pharmacy-main_0-800x533.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/robotic-pharmacy-main_0-400x267.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/robotic-pharmacy-main_0-768x512.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/robotic-pharmacy-main_0-1180x787.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/robotic-pharmacy-main_0-1920x1280.jpg 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/robotic-pharmacy-main_0-960x640.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Pharmacy resident Oliver Hsu photographs medication expiration dates. \u003ccite>(Susan Merrell/UCSF)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>“The pharmacist is the ultimate medication manager,” Stebbins says. “That’s what our training is all about.”\u003c/p>\n\u003cp>Stebbins has also helped develop a new automated call service, in which patients get a phone call within the first two days after they leave the hospital, asking if they have questions about their medication. If they do, Stebbins gets a text or email and she or one of her team of pharmacy students can respond to the patient’s concerns.\u003c/p>\n\u003cp>Getting the pharmacist involved sooner through services like this call service, frees up more time for the physician to focus on other aspects of the patient’s recovery.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>“People have to embrace technology, and not fear it,” she says. “The ultimate thing is that automation has led to the ability for us to reinvent ourselves as a profession, and we need to take the challenge.”\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>UCSF just received its largest, individual financial gift ever - a donation of $185 million dedicated to neurosciences.\u003c/p>\n\u003cp>The donation was made by Sanford Weill, the former CEO of Citigroup, and his wife, Joan. Weill says the gift is partly inspired by his father’s lifelong struggle with depression, and his mother's battle with Alzheimer's disease.\u003c/p>\n\u003caside class=\"pullquote alignright\">Mental illness definitely strikes a very personal chord in both of us.”\u003ccite>Joan Weill, philanthropic donor.\u003c/cite>\u003c/aside>\n\u003cp>“For the last 15 years of her life she was in an institution where she didn’t say a word,” says Weill. “She had no expression as it related to anything. So, that person who looked like my mother was really not my mother. This is a horrible disease!”\u003c/p>\n\u003cp>Weill hopes the downward spiral he witnessed with his mother's demise may someday be prevented through therapeutic advances discovered at UCSF.\u003c/p>\n\u003cp>Joan Weill nods her head in agreement. Tears fill her eyes as she remembers a dear family friend who recently committed suicide.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“It was such a tragedy,” She explains with a quivering voice. “This man suffered from depression his whole life. So, mental illness definitely strikes a very personal chord in both of us.”\u003c/p>\n\u003cp>The money will fund a new 270-thousand square foot facility in Mission Bay.\u003c/p>\n\u003caside class=\"pullquote alignright\">“If we don’t make breakthroughs in Alzheimer's, MS, autism and all the neuro-degenerative diseases it's going to be trillions and trillions of dollars,” '\u003ccite>Sanford Weill, former CEO Citigroup\u003c/cite>\u003c/aside>\n\u003cp>\"The Weill institute will bring together the traditional disciplines of neurology, psychiatry, neurosurgery and basic neurosciences to make advances in a faster way than was possible earlier,\" explains neurologist Steve Hauser, the institute’s new director.\u003c/p>\n\u003cp>The hope is that UCSF faculty will work across disciplines, and share their research with each other more often if they work in the same place. Currently, neurological departments are spread across different campuses.\u003c/p>\n\u003cp>In addition to 45 new research labs, the new institute will house clinics that will provide care to patients with diseases including:\u003c/p>\n\u003cul>\n\u003cli>Alzheimer’s disease and other dementias; amyotrophic lateral sclerosis (ALS); and Huntington’s disease.\u003c/li>\n\u003cli>Movement disorders, including Parkinson’s disease and dystonia.\u003c/li>\n\u003cli>Sleep disorders.\u003c/li>\n\u003cli>Chronic pain and migraines.\u003c/li>\n\u003cli>Paralysis caused by stroke or injury.\u003c/li>\n\u003c/ul>\n\u003cp>Weill says it's crucial to prioritize neurological research to lower health care costs.\u003c/p>\n\u003cp>“If we don’t make breakthroughs in Alzheimer's, MS, autism and all the neuro-degenerative diseases it's going to be trillions and trillions of dollars,” says Weill. “And, that’s not a good thing. Nor is the quality of life (for these patients) that’s available today.”\u003c/p>\n\u003cp>The philanthropic couple, who split time between their homes in Sonoma County and New York City, is dedicated to staying intellectually engaged and mentally stimulated as they move into their elder years. The couple will soon celebrate their 61st wedding anniversary.\u003c/p>\n\u003cp>“We've got to keep our minds working so that we can continue to relate to each other,” says Weill.\u003c/p>\n\u003cp>“And, so we know who each other are!” laughs Joan Weill.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp> \u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>UCSF just received its largest, individual financial gift ever - a donation of $185 million dedicated to neurosciences.\u003c/p>\n\u003cp>The donation was made by Sanford Weill, the former CEO of Citigroup, and his wife, Joan. Weill says the gift is partly inspired by his father’s lifelong struggle with depression, and his mother's battle with Alzheimer's disease.\u003c/p>\n\u003caside class=\"pullquote alignright\">Mental illness definitely strikes a very personal chord in both of us.”\u003ccite>Joan Weill, philanthropic donor.\u003c/cite>\u003c/aside>\n\u003cp>“For the last 15 years of her life she was in an institution where she didn’t say a word,” says Weill. “She had no expression as it related to anything. So, that person who looked like my mother was really not my mother. This is a horrible disease!”\u003c/p>\n\u003cp>Weill hopes the downward spiral he witnessed with his mother's demise may someday be prevented through therapeutic advances discovered at UCSF.\u003c/p>\n\u003cp>Joan Weill nods her head in agreement. Tears fill her eyes as she remembers a dear family friend who recently committed suicide.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“It was such a tragedy,” She explains with a quivering voice. “This man suffered from depression his whole life. So, mental illness definitely strikes a very personal chord in both of us.”\u003c/p>\n\u003cp>The money will fund a new 270-thousand square foot facility in Mission Bay.\u003c/p>\n\u003caside class=\"pullquote alignright\">“If we don’t make breakthroughs in Alzheimer's, MS, autism and all the neuro-degenerative diseases it's going to be trillions and trillions of dollars,” '\u003ccite>Sanford Weill, former CEO Citigroup\u003c/cite>\u003c/aside>\n\u003cp>\"The Weill institute will bring together the traditional disciplines of neurology, psychiatry, neurosurgery and basic neurosciences to make advances in a faster way than was possible earlier,\" explains neurologist Steve Hauser, the institute’s new director.\u003c/p>\n\u003cp>The hope is that UCSF faculty will work across disciplines, and share their research with each other more often if they work in the same place. Currently, neurological departments are spread across different campuses.\u003c/p>\n\u003cp>In addition to 45 new research labs, the new institute will house clinics that will provide care to patients with diseases including:\u003c/p>\n\u003cul>\n\u003cli>Alzheimer’s disease and other dementias; amyotrophic lateral sclerosis (ALS); and Huntington’s disease.\u003c/li>\n\u003cli>Movement disorders, including Parkinson’s disease and dystonia.\u003c/li>\n\u003cli>Sleep disorders.\u003c/li>\n\u003cli>Chronic pain and migraines.\u003c/li>\n\u003cli>Paralysis caused by stroke or injury.\u003c/li>\n\u003c/ul>\n\u003cp>Weill says it's crucial to prioritize neurological research to lower health care costs.\u003c/p>\n\u003cp>“If we don’t make breakthroughs in Alzheimer's, MS, autism and all the neuro-degenerative diseases it's going to be trillions and trillions of dollars,” says Weill. “And, that’s not a good thing. Nor is the quality of life (for these patients) that’s available today.”\u003c/p>\n\u003cp>The philanthropic couple, who split time between their homes in Sonoma County and New York City, is dedicated to staying intellectually engaged and mentally stimulated as they move into their elder years. The couple will soon celebrate their 61st wedding anniversary.\u003c/p>\n\u003cp>“We've got to keep our minds working so that we can continue to relate to each other,” says Weill.\u003c/p>\n\u003cp>“And, so we know who each other are!” laughs Joan Weill.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp> \u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>The last few months have witnessed the unraveling of the remarkable life sciences company Theranos, culminating in the latest news that federal regulators may \u003ca href=\"http://www.wsj.com/articles/regulators-propose-banning-theranos-founder-elizabeth-holmes-for-at-least-two-years-1460570869\">ban founder\u003c/a> Elizabeth Holmes from the blood-testing industry for at least two years. The company is also facing a \u003ca href=\"http://www.wsj.com/articles/theranos-is-subject-of-criminal-probe-by-u-s-1461019055\">federal criminal investigation\u003c/a> into whether it misled investors about its technology and company operations.\u003c/p>\n\u003cp>How has this widely acclaimed biomedical innovator fallen so far, so fast?\u003c/p>\n\u003caside class=\"pullquote alignright\">\"Theranos has had medical laboratory experts – including me – scratching their heads for some time.\"\u003c/aside>\n\u003cp>Theranos' revolutionary claim that won over investors was that it could accurately run \u003ca href=\"http://fortune.com/2014/06/12/theranos-blood-holmes/\">tests\u003c/a> using a small amount of blood taken from a poke in the patient’s finger, instead of a syringe full from a needle stuck in a vein. The idea was that dozens of tests, such as cholesterol and thyroid hormone levels, could be run on a single, tiny blood sample.\u003c/p>\n\u003cp>Theranos has had \u003ca href=\"http://www.degruyter.com/view/j/cclm.2015.53.issue-7/cclm-2015-0356/cclm-2015-0356.xml\">medical laboratory experts\u003c/a> – including me – scratching their heads for some time. Having worked quite a bit in development of innovative medical tests, I knew what the company was promising just didn’t make a lot of sense.\u003c/p>\n\u003cp>\u003cstrong>Theranos' Much-Hyped Blood Testing Technology\u003c/strong>\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Theranos \u003ca href=\"http://www.cleveland.com/healthfit/index.ssf/2015/03/cleveland_clinic_partners_with.html\">wowed investors\u003c/a>, journalists and even groups like the Cleveland Clinic and Walgreens with what you might call an “iMedicine” vision of blood testing. \u003c/p>\n\u003cp>\u003cimg class=\"alignleft size-thumbnail wp-image-152329\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/04/The-Conversation-400x32.png\" alt=\"The Conversation\" width=\"400\" height=\"32\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/04/The-Conversation-400x32.png 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/The-Conversation-800x63.png 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/The-Conversation-768x61.png 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/The-Conversation-1180x93.png 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/The-Conversation-1920x152.png 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/The-Conversation-960x76.png 960w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/The-Conversation.png 2000w\" sizes=\"(max-width: 400px) 100vw, 400px\">Basically, the idea was this. A few drops of blood from a fingertip are collected into a “nanotainer” collection tube and analyzed on the company’s proprietary machine, named after famed inventor Thomas Edison. How exactly the Edison devices \u003ca href=\"http://www.techinsider.io/how-theranos-revolutionary-technology-works-2015-10\">work is unknown\u003c/a>. But the claim was that many – possibly dozens – of tests could be run on those few drops of blood.\u003c/p>\n\u003cp>From a clinical perspective, this was always concerning, as such a shotgun approach to medical testing is actually very bad medicine. It is well-known that running numerous tests without symptoms or signs of disease \u003ca href=\"http://well.blogs.nytimes.com/2015/04/13/quantifying-tests-instead-of-good-care\">invariably leads to false positive results\u003c/a>.\u003c/p>\n\u003cp>Questions about the company’s technology came to a head in October. The Wall Street Journal alleged that Theranos might actually be performing the majority of its tests using \u003ca href=\"http://www.wsj.com/articles/theranos-has-struggled-with-blood-tests-1444881901\">traditional machines\u003c/a>, the kind already in use in labs across the country, instead of its own much touted Edison devices. And then the FDA called the nanotainer an “\u003ca href=\"http://money.cnn.com/2015/10/27/technology/theranos-fda-reports/\">uncleared medical device\u003c/a>.” The company stopped using its signature collection tube, except in \u003ca href=\"http://www.bloomberg.com/news/articles/2015-10-16/theranos-limits-new-blood-technology-to-one-in-200-tests\">the single test\u003c/a> that had been cleared by the FDA.\u003c/p>\n\u003cp>And, by the way, a machine capable of measuring many molecules on a drop of blood might seem like a breakthrough, unless you are someone familiar enough with life sciences technology to know that such capability has been invented numerous times. For instance, in my laboratory, we have a small handheld analyzer called an \u003ca href=\"https://www.abbottpointofcare.com/products-services/istat-handheld\">I-STAT\u003c/a>. It can do 25 different tests on very small amounts of blood. It was developed more than 20 years ago and is commonplace today.\u003c/p>\n\u003cp>\u003cstrong>Blood From a Finger Isn’t Same as Blood From a Vein\u003c/strong>\u003c/p>\n\u003cp>Let’s leave the technical issues aside for a moment and focus on those drops of blood from a fingertip.\u003c/p>\n\u003cfigure id=\"attachment_148281\" class=\"wp-caption alignright\" style=\"max-width: 400px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/04/Holmes-1.jpg\">\u003cimg class=\"wp-image-148281 size-thumbnail\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/04/Holmes-1-400x199.jpg\" alt=\"Elizabeth Holmes discussing Theranos' problems last week on the 'Today' show.\" width=\"400\" height=\"199\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/04/Holmes-1-400x199.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/Holmes-1.jpg 632w\" sizes=\"(max-width: 400px) 100vw, 400px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Elizabeth Holmes discussing Theranos' problems last week on the 'Today' show. \u003ccite>(Today show)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The vast majority of FDA-approved medically important laboratory tests are based on blood taken from a vein, not from the finger. In fact, the package inserts for medical tests cleared by the FDA say something like “blood should be collected using standard venous blood collection techniques.”\u003c/p>\n\u003cp>To understand why that matters, let’s start with some simple physiology. The human body can be considered a series of compartments; the concentration of any given molecule in blood or tissue fluid may vary from one compartment to the next.\u003c/p>\n\u003cp>A small molecule, such as glucose, can move easily between these compartments, and any bodily fluid can generally be used to test its concentration. This is why testing blood sugar with a finger prick works.\u003c/p>\n\u003cp>But large, medically important molecules like proteins and lipids are not always found in uniform concentrations throughout the body. The \u003ca href=\"http://ajcp.oxfordjournals.org/content/144/6/885.abstract\">composition of blood from finger pricks\u003c/a> from the same person can vary, a problem that doesn’t happen in blood taken from a vein.\u003c/p>\n\u003cp>When you lance a fingertip, you get both blood and tissue fluid, and this means that the concentration of molecules may be different than if the blood sample comes from a vein.\u003c/p>\n\u003cp>The point is that blood taken from a finger would be considered another bodily fluid by the FDA, and any tests using finger prick blood would need to cleared by the FDA. According to news reports, at one time Theranos was seeking FDA clearances for as many as \u003ca href=\"http://fortune.com/2015/07/16/fda-clears-theranos-to-do-test-outside-lab/\">120 tests\u003c/a>. Even if its technology actually works, hundreds of FDA clearances would have required hundreds of clinical trials, a process that would have taken years to complete.\u003c/p>\n\u003cp>Theranos has gotten only one test cleared by the FDA. That test – for Herpes infection – is for the detection of antibodies, not a measurement of their concentration. Tests for the presence or absence of a molecule are much simpler than those that quantify its concentration.\u003c/p>\n\u003cp>In March, researchers at the Mount Sinai School of Medicine published a \u003ca href=\"http://www.jci.org/articles/view/86318\">secret shopper study\u003c/a> comparing Theranos to Quest and LabCorp, two major medical testing companies. Overall, more of the results from Theranos were outside the normal range, indicating a need for further medical testing. This is a worrisome result because the secret shoppers were healthy adults. But it’s also difficult to interpret because we don’t know if Theranos used its Edison machines or ran diluted samples on conventional analyzers.\u003c/p>\n\u003cp>\u003cstrong>Millions Invested Without Any Proof\u003c/strong>\u003c/p>\n\u003cp>Why didn’t investors and journalists dig more deeply, such as by demanding a head-to-head comparison of Theranos' Edison machine to standard chemistry analyzers?\u003c/p>\n\u003cp>Part of the problem seems to have been the secrecy surrounding these types of startups. Theranos \u003ca href=\"http://www.newyorker.com/magazine/2014/12/15/blood-simpler\">always asserted\u003c/a> that it had to operate in “stealth mode” to protect its lead in breakthrough technology, which means that there was literally no peer-reviewed information out there about its technology.\u003c/p>\n\u003cp>But the leading explanation seems to be that they were \u003ca href=\"http://www.unz.com/isteve/the-elizabeth-holmes-reality-distortion-field/\">enthralled by the company’s charismatic young founder\u003c/a>. Laudatory magazine cover articles about Holmes have been so numerous that \u003ca href=\"http://recode.net/2015/10/26/theranos-ceo-elizabeth-holmess-five-best-cover-story-appearances-ranked/\">the phenomenon\u003c/a> has itself been a topic of discussion.\u003c/p>\n\u003cp>Theranos' \u003ca href=\"http://www.wsj.com/articles/at-theranos-many-strategies-and-snags-1451259629\">board of directors\u003c/a> also lacked anyone with expertise in laboratory testing or medical diagnostics. This should have been \u003ca href=\"http://www.businessinsider.com/theranos-board-of-directors-2015-10\">a warning sign\u003c/a>.\u003c/p>\n\u003cp>\u003cstrong>Show Me the Data\u003c/strong>\u003c/p>\n\u003cp>Just a few weeks before regulators proposed banning Holmes and Theranos President Sunny Balwani from the blood-testing industry, the \u003ca href=\"http://fortune.com/2016/04/07/theranos-adds-startlingly-well-qualified-medical-board/\">company tried to remedy this\u003c/a> by bulking up its medical advisor board with well-qualified experts in chemistry, pathology and clinical chemistry.\u003c/p>\n\u003cp>It’s hard to imagine these experts would have signed on amid all the bad publicity and allegations without demanding proof that the technology works, but who knows?\u003c/p>\n\u003cp>It still remains possible that Theranos has discovered a breakthrough technology that can do hundreds of lab tests on a drop of fluid from a patient’s finger. But even if this increasingly unlikely prospect is a reality, Holmes' erstwhile acolytes need to remember the lessons learned from the pantheon of past pied pipers and summed up by statistician W. Edwards Deming:\u003c/p>\n\u003cblockquote>\u003cp>In God we trust; all others must bring data.\u003c/p>\u003c/blockquote>\n\u003cp>\u003cimg src=\"https://counter.theconversation.edu.au/content/57787/count.gif\" alt=\"The Conversation\" width=\"1\" height=\"1\">\u003cem>\u003ca href=\"http://theconversation.com/profiles/norman-a-paradis-166604\">Norman A. Paradis\u003c/a>, Professor of Medicine, \u003ca href=\"http://theconversation.com/institutions/dartmouth-college\">Dartmouth College\u003c/a>\u003c/em>\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>This article was originally published on \u003ca href=\"http://theconversation.com\">The Conversation\u003c/a>. Read the \u003ca href=\"https://theconversation.com/the-rise-and-fall-of-theranos-so-many-lessons-in-a-drop-of-blood-57787\">original article\u003c/a>.\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>The last few months have witnessed the unraveling of the remarkable life sciences company Theranos, culminating in the latest news that federal regulators may \u003ca href=\"http://www.wsj.com/articles/regulators-propose-banning-theranos-founder-elizabeth-holmes-for-at-least-two-years-1460570869\">ban founder\u003c/a> Elizabeth Holmes from the blood-testing industry for at least two years. The company is also facing a \u003ca href=\"http://www.wsj.com/articles/theranos-is-subject-of-criminal-probe-by-u-s-1461019055\">federal criminal investigation\u003c/a> into whether it misled investors about its technology and company operations.\u003c/p>\n\u003cp>How has this widely acclaimed biomedical innovator fallen so far, so fast?\u003c/p>\n\u003caside class=\"pullquote alignright\">\"Theranos has had medical laboratory experts – including me – scratching their heads for some time.\"\u003c/aside>\n\u003cp>Theranos' revolutionary claim that won over investors was that it could accurately run \u003ca href=\"http://fortune.com/2014/06/12/theranos-blood-holmes/\">tests\u003c/a> using a small amount of blood taken from a poke in the patient’s finger, instead of a syringe full from a needle stuck in a vein. The idea was that dozens of tests, such as cholesterol and thyroid hormone levels, could be run on a single, tiny blood sample.\u003c/p>\n\u003cp>Theranos has had \u003ca href=\"http://www.degruyter.com/view/j/cclm.2015.53.issue-7/cclm-2015-0356/cclm-2015-0356.xml\">medical laboratory experts\u003c/a> – including me – scratching their heads for some time. Having worked quite a bit in development of innovative medical tests, I knew what the company was promising just didn’t make a lot of sense.\u003c/p>\n\u003cp>\u003cstrong>Theranos' Much-Hyped Blood Testing Technology\u003c/strong>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Theranos \u003ca href=\"http://www.cleveland.com/healthfit/index.ssf/2015/03/cleveland_clinic_partners_with.html\">wowed investors\u003c/a>, journalists and even groups like the Cleveland Clinic and Walgreens with what you might call an “iMedicine” vision of blood testing. \u003c/p>\n\u003cp>\u003cimg class=\"alignleft size-thumbnail wp-image-152329\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/04/The-Conversation-400x32.png\" alt=\"The Conversation\" width=\"400\" height=\"32\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/04/The-Conversation-400x32.png 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/The-Conversation-800x63.png 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/The-Conversation-768x61.png 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/The-Conversation-1180x93.png 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/The-Conversation-1920x152.png 1920w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/The-Conversation-960x76.png 960w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/The-Conversation.png 2000w\" sizes=\"(max-width: 400px) 100vw, 400px\">Basically, the idea was this. A few drops of blood from a fingertip are collected into a “nanotainer” collection tube and analyzed on the company’s proprietary machine, named after famed inventor Thomas Edison. How exactly the Edison devices \u003ca href=\"http://www.techinsider.io/how-theranos-revolutionary-technology-works-2015-10\">work is unknown\u003c/a>. But the claim was that many – possibly dozens – of tests could be run on those few drops of blood.\u003c/p>\n\u003cp>From a clinical perspective, this was always concerning, as such a shotgun approach to medical testing is actually very bad medicine. It is well-known that running numerous tests without symptoms or signs of disease \u003ca href=\"http://well.blogs.nytimes.com/2015/04/13/quantifying-tests-instead-of-good-care\">invariably leads to false positive results\u003c/a>.\u003c/p>\n\u003cp>Questions about the company’s technology came to a head in October. The Wall Street Journal alleged that Theranos might actually be performing the majority of its tests using \u003ca href=\"http://www.wsj.com/articles/theranos-has-struggled-with-blood-tests-1444881901\">traditional machines\u003c/a>, the kind already in use in labs across the country, instead of its own much touted Edison devices. And then the FDA called the nanotainer an “\u003ca href=\"http://money.cnn.com/2015/10/27/technology/theranos-fda-reports/\">uncleared medical device\u003c/a>.” The company stopped using its signature collection tube, except in \u003ca href=\"http://www.bloomberg.com/news/articles/2015-10-16/theranos-limits-new-blood-technology-to-one-in-200-tests\">the single test\u003c/a> that had been cleared by the FDA.\u003c/p>\n\u003cp>And, by the way, a machine capable of measuring many molecules on a drop of blood might seem like a breakthrough, unless you are someone familiar enough with life sciences technology to know that such capability has been invented numerous times. For instance, in my laboratory, we have a small handheld analyzer called an \u003ca href=\"https://www.abbottpointofcare.com/products-services/istat-handheld\">I-STAT\u003c/a>. It can do 25 different tests on very small amounts of blood. It was developed more than 20 years ago and is commonplace today.\u003c/p>\n\u003cp>\u003cstrong>Blood From a Finger Isn’t Same as Blood From a Vein\u003c/strong>\u003c/p>\n\u003cp>Let’s leave the technical issues aside for a moment and focus on those drops of blood from a fingertip.\u003c/p>\n\u003cfigure id=\"attachment_148281\" class=\"wp-caption alignright\" style=\"max-width: 400px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/04/Holmes-1.jpg\">\u003cimg class=\"wp-image-148281 size-thumbnail\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/04/Holmes-1-400x199.jpg\" alt=\"Elizabeth Holmes discussing Theranos' problems last week on the 'Today' show.\" width=\"400\" height=\"199\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/04/Holmes-1-400x199.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/Holmes-1.jpg 632w\" sizes=\"(max-width: 400px) 100vw, 400px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Elizabeth Holmes discussing Theranos' problems last week on the 'Today' show. \u003ccite>(Today show)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The vast majority of FDA-approved medically important laboratory tests are based on blood taken from a vein, not from the finger. In fact, the package inserts for medical tests cleared by the FDA say something like “blood should be collected using standard venous blood collection techniques.”\u003c/p>\n\u003cp>To understand why that matters, let’s start with some simple physiology. The human body can be considered a series of compartments; the concentration of any given molecule in blood or tissue fluid may vary from one compartment to the next.\u003c/p>\n\u003cp>A small molecule, such as glucose, can move easily between these compartments, and any bodily fluid can generally be used to test its concentration. This is why testing blood sugar with a finger prick works.\u003c/p>\n\u003cp>But large, medically important molecules like proteins and lipids are not always found in uniform concentrations throughout the body. The \u003ca href=\"http://ajcp.oxfordjournals.org/content/144/6/885.abstract\">composition of blood from finger pricks\u003c/a> from the same person can vary, a problem that doesn’t happen in blood taken from a vein.\u003c/p>\n\u003cp>When you lance a fingertip, you get both blood and tissue fluid, and this means that the concentration of molecules may be different than if the blood sample comes from a vein.\u003c/p>\n\u003cp>The point is that blood taken from a finger would be considered another bodily fluid by the FDA, and any tests using finger prick blood would need to cleared by the FDA. According to news reports, at one time Theranos was seeking FDA clearances for as many as \u003ca href=\"http://fortune.com/2015/07/16/fda-clears-theranos-to-do-test-outside-lab/\">120 tests\u003c/a>. Even if its technology actually works, hundreds of FDA clearances would have required hundreds of clinical trials, a process that would have taken years to complete.\u003c/p>\n\u003cp>Theranos has gotten only one test cleared by the FDA. That test – for Herpes infection – is for the detection of antibodies, not a measurement of their concentration. Tests for the presence or absence of a molecule are much simpler than those that quantify its concentration.\u003c/p>\n\u003cp>In March, researchers at the Mount Sinai School of Medicine published a \u003ca href=\"http://www.jci.org/articles/view/86318\">secret shopper study\u003c/a> comparing Theranos to Quest and LabCorp, two major medical testing companies. Overall, more of the results from Theranos were outside the normal range, indicating a need for further medical testing. This is a worrisome result because the secret shoppers were healthy adults. But it’s also difficult to interpret because we don’t know if Theranos used its Edison machines or ran diluted samples on conventional analyzers.\u003c/p>\n\u003cp>\u003cstrong>Millions Invested Without Any Proof\u003c/strong>\u003c/p>\n\u003cp>Why didn’t investors and journalists dig more deeply, such as by demanding a head-to-head comparison of Theranos' Edison machine to standard chemistry analyzers?\u003c/p>\n\u003cp>Part of the problem seems to have been the secrecy surrounding these types of startups. Theranos \u003ca href=\"http://www.newyorker.com/magazine/2014/12/15/blood-simpler\">always asserted\u003c/a> that it had to operate in “stealth mode” to protect its lead in breakthrough technology, which means that there was literally no peer-reviewed information out there about its technology.\u003c/p>\n\u003cp>But the leading explanation seems to be that they were \u003ca href=\"http://www.unz.com/isteve/the-elizabeth-holmes-reality-distortion-field/\">enthralled by the company’s charismatic young founder\u003c/a>. Laudatory magazine cover articles about Holmes have been so numerous that \u003ca href=\"http://recode.net/2015/10/26/theranos-ceo-elizabeth-holmess-five-best-cover-story-appearances-ranked/\">the phenomenon\u003c/a> has itself been a topic of discussion.\u003c/p>\n\u003cp>Theranos' \u003ca href=\"http://www.wsj.com/articles/at-theranos-many-strategies-and-snags-1451259629\">board of directors\u003c/a> also lacked anyone with expertise in laboratory testing or medical diagnostics. This should have been \u003ca href=\"http://www.businessinsider.com/theranos-board-of-directors-2015-10\">a warning sign\u003c/a>.\u003c/p>\n\u003cp>\u003cstrong>Show Me the Data\u003c/strong>\u003c/p>\n\u003cp>Just a few weeks before regulators proposed banning Holmes and Theranos President Sunny Balwani from the blood-testing industry, the \u003ca href=\"http://fortune.com/2016/04/07/theranos-adds-startlingly-well-qualified-medical-board/\">company tried to remedy this\u003c/a> by bulking up its medical advisor board with well-qualified experts in chemistry, pathology and clinical chemistry.\u003c/p>\n\u003cp>It’s hard to imagine these experts would have signed on amid all the bad publicity and allegations without demanding proof that the technology works, but who knows?\u003c/p>\n\u003cp>It still remains possible that Theranos has discovered a breakthrough technology that can do hundreds of lab tests on a drop of fluid from a patient’s finger. But even if this increasingly unlikely prospect is a reality, Holmes' erstwhile acolytes need to remember the lessons learned from the pantheon of past pied pipers and summed up by statistician W. Edwards Deming:\u003c/p>\n\u003cblockquote>\u003cp>In God we trust; all others must bring data.\u003c/p>\u003c/blockquote>\n\u003cp>\u003cimg src=\"https://counter.theconversation.edu.au/content/57787/count.gif\" alt=\"The Conversation\" width=\"1\" height=\"1\">\u003cem>\u003ca href=\"http://theconversation.com/profiles/norman-a-paradis-166604\">Norman A. Paradis\u003c/a>, Professor of Medicine, \u003ca href=\"http://theconversation.com/institutions/dartmouth-college\">Dartmouth College\u003c/a>\u003c/em>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>This article was originally published on \u003ca href=\"http://theconversation.com\">The Conversation\u003c/a>. Read the \u003ca href=\"https://theconversation.com/the-rise-and-fall-of-theranos-so-many-lessons-in-a-drop-of-blood-57787\">original article\u003c/a>.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "The Generation That Survived a Death Sentence—Three Times",
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"content": "\u003cp>Many people with the rare blood disease, hemophilia, never expected to be alive today because they were told at a young age they would likely die from uncontrolled bleeding.\u003c/p>\n\u003caside class=\"pullquote alignright\">'My mom had taken me to the hematologist and he said, \"You know, these kids don’t live much past 13.\" ’\u003ccite>Randy Curtis, hemophilia patient\u003c/cite>\u003c/aside>\n\u003cp>When Randy Curtis bumped his knee in second grade he received devastating news.\u003c/p>\n\u003cp>“I had fallen or something like that and my mom had taken me to the hematologist and he said, ‘You know, these kids don’t really live past 13.’ So, I went back to school the next day and told my math teacher, 'I don't have to learn this stuff. I’m going to be dead!'” says Curtis.\u003c/p>\n\u003cp>But, he was wrong. He’s now 61-years-old.\u003c/p>\n\u003cp>\u003cb>What Is Hemophilia?\u003c/b>\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Curtis has hemophilia, a rare genetic disease, where his liver fails to produce a protein that helps his blood clot. Only \u003ca href=\"http://www.wfh.org/en/page.aspx?pid=646\" target=\"_blank\">one in 10,000\u003c/a> boys are born with hemophilia.\u003c/p>\n\u003cp>To prevent something as benign as a bump or a fall, Curtis wore protective gear growing up. He went to school in a wheelchair. He wore braces on his elbows and knees. He spent recess in the school office because injuries could spark days of internal bleeding.\u003c/p>\n\u003cp>“For these children the bleeding doesn’t stop,\" says \u003ca href=\"http://profiles.ucsf.edu/marion.koerper\" target=\"_blank\">Marion Koerper\u003c/a>, a retired UCSF hematologist. \"And, after six or eight hours the ankle or the knee joint is swollen to the point where it’s extremely painful. They can’t straighten their leg, they can’t walk on their leg and they need to be brought in for treatment.\"\u003c/p>\n\u003cfigure id=\"attachment_145999\" class=\"wp-caption alignright\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-145999\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/04/2yrs-old-800x600.jpg\" alt=\"Randy Curtis at 2-years-old with a bruised eye.\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/04/2yrs-old-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/2yrs-old-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/2yrs-old-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/2yrs-old-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/2yrs-old-960x720.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/2yrs-old.jpg 1739w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Randy Curtis at 2-years-old with a bruised eye. \u003ccite>(Curtis family)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Curtis' childhood was peppered with weeklong trips to the hospital every month or so. He lived in fear of an intracranial bleed that would take his life.\u003c/p>\n\u003cp>\u003cb>A Royal History\u003c/b>\u003c/p>\n\u003cp>Hemophilia has often been called the \"royal disease\" because it spread through many noble families in Europe in the 1900s.\u003c/p>\n\u003cp>British monarch Queen Victoria, who ruled from 1837-1901, is believed to have had one son who had hemophilia, and two daughters who were carriers of the disease. One of the princesses married Tsar Nicholas II of Russia, whose son Alexei had hemophilia at the turn of the 20th century. The tale is featured in the 1971 Academy Award winning film \"\u003ca href=\"https://www.youtube.com/watch?v=fCQahAJnW1g\" target=\"_blank\">Nicholas and Alexandra\u003c/a>.\"\u003c/p>\n\u003cp>Hemophilia was carried through various royal family members for three generations before it disappeared.\u003c/p>\n\u003cp>\u003cb>Breakthrough\u003c/b>\u003c/p>\n\u003cp>In the 1950s scientists discovered that fresh frozen plasma, could be transfused in patients in a hospital. But it took days to transfuse enough clotting factor to provide relief for a joint bleed. In 1960 the \u003ca href=\"https://www.hemophilia.org/Bleeding-Disorders/History-of-Bleeding-Disorders\" target=\"_blank\">life expectancy\u003c/a> for severe hemophiliacs was less than 20 years.\u003c/p>\n\u003cp>Then in the late 1960s scientists discovered how to make the missing clotting factor in freeze-dried powder concentrate from human blood plasma. It was a huge breakthrough because suddenly patients could infuse the missing factor at home.\u003c/p>\n\u003cfigure id=\"attachment_146024\" class=\"wp-caption alignright\" style=\"max-width: 450px\">\u003cimg class=\"size-medium wp-image-146024\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/04/Casts-450x600.jpg\" alt=\"Doctors put casts on Randy Curtis's ankles during summer months to immobilize his ankles and prevent injuries. \" width=\"450\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/04/Casts-450x600.jpg 450w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/Casts-400x533.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/Casts-768x1023.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/Casts.jpg 872w\" sizes=\"(max-width: 450px) 100vw, 450px\">\u003cfigcaption class=\"wp-caption-text\">Doctors put casts on Randy Curtis during summer months to immobilize his ankles and prevent injuries. \u003ccite>(Curtis family)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Randy Curtis has given himself an intravenous injection of clotting factor every few days since he was 14-years-old.\u003c/p>\n\u003cp>The home regimen gave Curtis his life back. No more bleeds. No more hospitals. As long as Curtis injected his medicine his blood would clot normally.\u003c/p>\n\u003cp>“About my second year in college I realized that with the new products that they had out, I was going to have to get a job!” exclaims Curtis. “It was a shocking revelation. And I had a plan for employment.”\u003c/p>\n\u003cp>He graduated with a degree in genetics. He married, had a son and started an MBA program.\u003c/p>\n\u003cp>\u003cb>Elation Turns to Devastation \u003c/b>\u003c/p>\n\u003cp>“Then it all came crashing down when we discovered how many were infected with HIV,” says hematologist Dr. Koerper.\u003c/p>\n\u003cp>Koerper is referring to a medical disaster that occurred in the early 1980s. The clotting factor medication for hemophiliacs was accidentally contaminated with HIV and hepatitis C from human blood donations.\u003c/p>\n\u003cp>“Those were really dark days,” Koeper says hauntingly. “I looked at my patients and said you’re gonna die.”\u003c/p>\n\u003cp>Just as hemophiliac patients received a new lease on life, half (about 10,000) of the hemophiliacs in the U.S. were infected with HIV.\u003c/p>\n\u003cp>\u003c!-- iframe plugin v.4.3 wordpress.org/plugins/iframe/ -->\u003cbr>\n\u003ciframe src=\"//datawrapper.dwcdn.net/3tZGx/12/\" frameborder=\"0\" allowtransparency=\"true\" allowfullscreen=\"allowfullscreen\" webkitallowfullscreen=\"webkitallowfullscreen\" mozallowfullscreen=\"mozallowfullscreen\" oallowfullscreen=\"oallowfullscreen\" msallowfullscreen=\"msallowfullscreen\" width=\"748\" height=\"500\" scrolling=\"yes\" class=\"iframe-class\">\u003c/iframe>\u003c/p>\n\u003cp>“A lot of my really good friends are gone,” says Curtis. “A lot of their wives are gone because there was a lot of spread of HIV before we even knew it was HIV.”\u003c/p>\n\u003cp>Curtis was one of the lucky ones, he never became infected.\u003c/p>\n\u003cp>But a few years ago, he was diagnosed with hepatitis C, a virus he likely acquired at the same time as the HIV crisis when the nation's blood supply was tainted.\u003c/p>\n\u003cp>“This was 48 weeks of hell. This was inteferon, ribavirin and all this stuff that gave you basically the flu everyday for 48 weeks,” explains Curtis.\u003c/p>\n\u003cp>The drugs successfully knocked out hepatitis C. But, the treatment took a toll. Curtis’ system is still recovering a year later from all the drugs. Fortunately, virus contamination is no longer a threat because today’s hemophilia medication is often developed in a lab through the use of DNA technology rather than sourced from human blood.\u003c/p>\n\u003cp>\u003cb>The Future\u003c/b>\u003c/p>\n\u003cp>Pharmaceutical companies manufacture hemophilia medication at plants like \u003ca href=\"http://pharma.bayer.com/en/innovation-partnering/research-focus/hematology/\" target=\"_blank\">Bayer HealthCare's\u003c/a> biotech plant in Berkeley. The company was one of the early players in helping to develop the breakthrough clotting factor.\u003c/p>\n\u003cp>Now researchers are looking beyond treatment, toward a cure using some of the latest, albeit controversial, advances in genetics.\u003c/p>\n\u003cp>“The hope could be that in about ten years a gene therapy product could become available,” says Hans Duerr, who is with Bayer’s hematology unit.\u003c/p>\n\u003cfigure id=\"attachment_146025\" class=\"wp-caption aligncenter\" style=\"max-width: 709px\">\u003cimg class=\"wp-image-146025 size-full\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/04/Bayer.jpg\" alt=\"\" width=\"709\" height=\"473\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/04/Bayer.jpg 709w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/Bayer-400x267.jpg 400w\" sizes=\"(max-width: 709px) 100vw, 709px\">\u003cfigcaption class=\"wp-caption-text\">Bayer scientists manufacturing hemophilia medication at the company's plant in Berkeley, California. \u003ccite>(Bayer HealthCare)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The company recently partnered with \u003ca href=\"http://crisprtx.com/\" target=\"_blank\">CRISPR Therapeutics \u003c/a>— a gene editing startup. Bayer is investing $300 million in the partnership in hopes of altering the genes involved in the disease.\u003c/p>\n\u003cp>\u003cb>First World Success Story\u003c/b>\u003c/p>\n\u003cp>Meanwhile, Randy Curtis is enjoying retirement. He's almost giddy when he looks back on his life.\u003c/p>\n\u003cp>“I’ve been really lucky!” exclaims Curtis. “I mean I’m vertical! Right? I can’t complain!”\u003c/p>\n\u003cp>But, his journey is a First World tale. Hemophilia treatment is extremely expensive. Curtis’ annual treatment is around $250,000.\u003c/p>\n\u003cp>The high cost and lack of access to drugs leaves most hemophiliacs in developing countries without treatment. The majority of patients in the world still don't see puberty.\u003c/p>\n\u003cp>Curtis plans to spend a lot of his retirement volunteering with the National Hemophilia Foundation and World Federation of Hemophilia to improve international care.\u003c/p>\n\u003cp>“We’re building tools for developing countries and showing them how to collect data and do their own advocacy,” says Curtis.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>He says he hopes someday \u003cem>all\u003c/em> hemophiliacs will live full active lives.\u003c/p>\n\n",
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"excerpt": "Many people with the rare blood disorder hemophilia never expected to be alive today. But many are now facing retirement thanks to improved treatment.",
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"description": "Many people with the rare blood disorder hemophilia never expected to be alive today. But many are now facing retirement thanks to improved treatment.",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Many people with the rare blood disease, hemophilia, never expected to be alive today because they were told at a young age they would likely die from uncontrolled bleeding.\u003c/p>\n\u003caside class=\"pullquote alignright\">'My mom had taken me to the hematologist and he said, \"You know, these kids don’t live much past 13.\" ’\u003ccite>Randy Curtis, hemophilia patient\u003c/cite>\u003c/aside>\n\u003cp>When Randy Curtis bumped his knee in second grade he received devastating news.\u003c/p>\n\u003cp>“I had fallen or something like that and my mom had taken me to the hematologist and he said, ‘You know, these kids don’t really live past 13.’ So, I went back to school the next day and told my math teacher, 'I don't have to learn this stuff. I’m going to be dead!'” says Curtis.\u003c/p>\n\u003cp>But, he was wrong. He’s now 61-years-old.\u003c/p>\n\u003cp>\u003cb>What Is Hemophilia?\u003c/b>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Curtis has hemophilia, a rare genetic disease, where his liver fails to produce a protein that helps his blood clot. Only \u003ca href=\"http://www.wfh.org/en/page.aspx?pid=646\" target=\"_blank\">one in 10,000\u003c/a> boys are born with hemophilia.\u003c/p>\n\u003cp>To prevent something as benign as a bump or a fall, Curtis wore protective gear growing up. He went to school in a wheelchair. He wore braces on his elbows and knees. He spent recess in the school office because injuries could spark days of internal bleeding.\u003c/p>\n\u003cp>“For these children the bleeding doesn’t stop,\" says \u003ca href=\"http://profiles.ucsf.edu/marion.koerper\" target=\"_blank\">Marion Koerper\u003c/a>, a retired UCSF hematologist. \"And, after six or eight hours the ankle or the knee joint is swollen to the point where it’s extremely painful. They can’t straighten their leg, they can’t walk on their leg and they need to be brought in for treatment.\"\u003c/p>\n\u003cfigure id=\"attachment_145999\" class=\"wp-caption alignright\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-145999\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/04/2yrs-old-800x600.jpg\" alt=\"Randy Curtis at 2-years-old with a bruised eye.\" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/04/2yrs-old-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/2yrs-old-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/2yrs-old-768x576.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/2yrs-old-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/2yrs-old-960x720.jpg 960w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/2yrs-old.jpg 1739w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Randy Curtis at 2-years-old with a bruised eye. \u003ccite>(Curtis family)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Curtis' childhood was peppered with weeklong trips to the hospital every month or so. He lived in fear of an intracranial bleed that would take his life.\u003c/p>\n\u003cp>\u003cb>A Royal History\u003c/b>\u003c/p>\n\u003cp>Hemophilia has often been called the \"royal disease\" because it spread through many noble families in Europe in the 1900s.\u003c/p>\n\u003cp>British monarch Queen Victoria, who ruled from 1837-1901, is believed to have had one son who had hemophilia, and two daughters who were carriers of the disease. One of the princesses married Tsar Nicholas II of Russia, whose son Alexei had hemophilia at the turn of the 20th century. The tale is featured in the 1971 Academy Award winning film \"\u003ca href=\"https://www.youtube.com/watch?v=fCQahAJnW1g\" target=\"_blank\">Nicholas and Alexandra\u003c/a>.\"\u003c/p>\n\u003cp>Hemophilia was carried through various royal family members for three generations before it disappeared.\u003c/p>\n\u003cp>\u003cb>Breakthrough\u003c/b>\u003c/p>\n\u003cp>In the 1950s scientists discovered that fresh frozen plasma, could be transfused in patients in a hospital. But it took days to transfuse enough clotting factor to provide relief for a joint bleed. In 1960 the \u003ca href=\"https://www.hemophilia.org/Bleeding-Disorders/History-of-Bleeding-Disorders\" target=\"_blank\">life expectancy\u003c/a> for severe hemophiliacs was less than 20 years.\u003c/p>\n\u003cp>Then in the late 1960s scientists discovered how to make the missing clotting factor in freeze-dried powder concentrate from human blood plasma. It was a huge breakthrough because suddenly patients could infuse the missing factor at home.\u003c/p>\n\u003cfigure id=\"attachment_146024\" class=\"wp-caption alignright\" style=\"max-width: 450px\">\u003cimg class=\"size-medium wp-image-146024\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/04/Casts-450x600.jpg\" alt=\"Doctors put casts on Randy Curtis's ankles during summer months to immobilize his ankles and prevent injuries. \" width=\"450\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/04/Casts-450x600.jpg 450w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/Casts-400x533.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/Casts-768x1023.jpg 768w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/Casts.jpg 872w\" sizes=\"(max-width: 450px) 100vw, 450px\">\u003cfigcaption class=\"wp-caption-text\">Doctors put casts on Randy Curtis during summer months to immobilize his ankles and prevent injuries. \u003ccite>(Curtis family)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Randy Curtis has given himself an intravenous injection of clotting factor every few days since he was 14-years-old.\u003c/p>\n\u003cp>The home regimen gave Curtis his life back. No more bleeds. No more hospitals. As long as Curtis injected his medicine his blood would clot normally.\u003c/p>\n\u003cp>“About my second year in college I realized that with the new products that they had out, I was going to have to get a job!” exclaims Curtis. “It was a shocking revelation. And I had a plan for employment.”\u003c/p>\n\u003cp>He graduated with a degree in genetics. He married, had a son and started an MBA program.\u003c/p>\n\u003cp>\u003cb>Elation Turns to Devastation \u003c/b>\u003c/p>\n\u003cp>“Then it all came crashing down when we discovered how many were infected with HIV,” says hematologist Dr. Koerper.\u003c/p>\n\u003cp>Koerper is referring to a medical disaster that occurred in the early 1980s. The clotting factor medication for hemophiliacs was accidentally contaminated with HIV and hepatitis C from human blood donations.\u003c/p>\n\u003cp>“Those were really dark days,” Koeper says hauntingly. “I looked at my patients and said you’re gonna die.”\u003c/p>\n\u003cp>Just as hemophiliac patients received a new lease on life, half (about 10,000) of the hemophiliacs in the U.S. were infected with HIV.\u003c/p>\n\u003cp>\u003c!-- iframe plugin v.4.3 wordpress.org/plugins/iframe/ -->\u003cbr>\n\u003ciframe src=\"//datawrapper.dwcdn.net/3tZGx/12/\" frameborder=\"0\" allowtransparency=\"true\" allowfullscreen=\"allowfullscreen\" webkitallowfullscreen=\"webkitallowfullscreen\" mozallowfullscreen=\"mozallowfullscreen\" oallowfullscreen=\"oallowfullscreen\" msallowfullscreen=\"msallowfullscreen\" width=\"748\" height=\"500\" scrolling=\"yes\" class=\"iframe-class\">\u003c/iframe>\u003c/p>\n\u003cp>“A lot of my really good friends are gone,” says Curtis. “A lot of their wives are gone because there was a lot of spread of HIV before we even knew it was HIV.”\u003c/p>\n\u003cp>Curtis was one of the lucky ones, he never became infected.\u003c/p>\n\u003cp>But a few years ago, he was diagnosed with hepatitis C, a virus he likely acquired at the same time as the HIV crisis when the nation's blood supply was tainted.\u003c/p>\n\u003cp>“This was 48 weeks of hell. This was inteferon, ribavirin and all this stuff that gave you basically the flu everyday for 48 weeks,” explains Curtis.\u003c/p>\n\u003cp>The drugs successfully knocked out hepatitis C. But, the treatment took a toll. Curtis’ system is still recovering a year later from all the drugs. Fortunately, virus contamination is no longer a threat because today’s hemophilia medication is often developed in a lab through the use of DNA technology rather than sourced from human blood.\u003c/p>\n\u003cp>\u003cb>The Future\u003c/b>\u003c/p>\n\u003cp>Pharmaceutical companies manufacture hemophilia medication at plants like \u003ca href=\"http://pharma.bayer.com/en/innovation-partnering/research-focus/hematology/\" target=\"_blank\">Bayer HealthCare's\u003c/a> biotech plant in Berkeley. The company was one of the early players in helping to develop the breakthrough clotting factor.\u003c/p>\n\u003cp>Now researchers are looking beyond treatment, toward a cure using some of the latest, albeit controversial, advances in genetics.\u003c/p>\n\u003cp>“The hope could be that in about ten years a gene therapy product could become available,” says Hans Duerr, who is with Bayer’s hematology unit.\u003c/p>\n\u003cfigure id=\"attachment_146025\" class=\"wp-caption aligncenter\" style=\"max-width: 709px\">\u003cimg class=\"wp-image-146025 size-full\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2016/04/Bayer.jpg\" alt=\"\" width=\"709\" height=\"473\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2016/04/Bayer.jpg 709w, https://ww2.kqed.org/app/uploads/sites/13/2016/04/Bayer-400x267.jpg 400w\" sizes=\"(max-width: 709px) 100vw, 709px\">\u003cfigcaption class=\"wp-caption-text\">Bayer scientists manufacturing hemophilia medication at the company's plant in Berkeley, California. \u003ccite>(Bayer HealthCare)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The company recently partnered with \u003ca href=\"http://crisprtx.com/\" target=\"_blank\">CRISPR Therapeutics \u003c/a>— a gene editing startup. Bayer is investing $300 million in the partnership in hopes of altering the genes involved in the disease.\u003c/p>\n\u003cp>\u003cb>First World Success Story\u003c/b>\u003c/p>\n\u003cp>Meanwhile, Randy Curtis is enjoying retirement. He's almost giddy when he looks back on his life.\u003c/p>\n\u003cp>“I’ve been really lucky!” exclaims Curtis. “I mean I’m vertical! Right? I can’t complain!”\u003c/p>\n\u003cp>But, his journey is a First World tale. Hemophilia treatment is extremely expensive. Curtis’ annual treatment is around $250,000.\u003c/p>\n\u003cp>The high cost and lack of access to drugs leaves most hemophiliacs in developing countries without treatment. The majority of patients in the world still don't see puberty.\u003c/p>\n\u003cp>Curtis plans to spend a lot of his retirement volunteering with the National Hemophilia Foundation and World Federation of Hemophilia to improve international care.\u003c/p>\n\u003cp>“We’re building tools for developing countries and showing them how to collect data and do their own advocacy,” says Curtis.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>He says he hopes someday \u003cem>all\u003c/em> hemophiliacs will live full active lives.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"info": "The Commonwealth Club of California is the nation's oldest and largest public affairs forum. As a non-partisan forum, The Club brings to the public airwaves diverse viewpoints on important topics. The Club's weekly radio broadcast - the oldest in the U.S., dating back to 1924 - is carried across the nation on public radio stations and is now podcasting. Our website archive features audio of our recent programs, as well as selected speeches from our long and distinguished history. This podcast feed is usually updated twice a week and is always un-edited.",
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"order": 9
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"id": "fresh-air",
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"airtime": "SUN 7:30pm-8pm",
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"tagline": "Where conversation and cultura meet",
"info": "What kind of no sabo word is Hyphenación? For us, it’s about living within a hyphenation. Like being a third-gen Mexican-American from the Texas border now living that Bay Area Chicano life. Like Xorje! Each week we bring together a couple of hyphenated Latinos to talk all about personal life choices: family, careers, relationships, belonging … everything is on the table. ",
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"order": 15
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"title": "The Political Mind of Jerry Brown",
"tagline": "Lessons from a lifetime in politics",
"info": "The Political Mind of Jerry Brown brings listeners the wisdom of the former Governor, Mayor, and presidential candidate. Scott Shafer interviewed Brown for more than 40 hours, covering the former governor's life and half-century in the political game – and Brown has some lessons he'd like to share. ",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/The-Political-Mind-of-Jerry-Brown-Podcast-Tile-703x703-1.jpg",
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"order": 18
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"info": "Latino USA, the radio journal of news and culture, is the only national, English-language radio program produced from a Latino perspective.",
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"marketplace": {
"id": "marketplace",
"title": "Marketplace",
"info": "Our flagship program, helmed by Kai Ryssdal, examines what the day in money delivered, through stories, conversations, newsworthy numbers and more. Updated Monday through Friday at about 3:30 p.m. PT.",
"airtime": "MON-FRI 4pm-4:30pm, MON-WED 6:30pm-7pm",
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"source": "American Public Media"
},
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"masters-of-scale": {
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"title": "Masters of Scale",
"info": "Masters of Scale is an original podcast in which LinkedIn co-founder and Greylock Partner Reid Hoffman sets out to describe and prove theories that explain how great entrepreneurs take their companies from zero to a gazillion in ingenious fashion.",
"airtime": "Every other Wednesday June 12 through October 16 at 8pm (repeats Thursdays at 2am)",
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},
"mindshift": {
"id": "mindshift",
"title": "MindShift",
"tagline": "A podcast about the future of learning and how we raise our kids",
"info": "The MindShift podcast explores the innovations in education that are shaping how kids learn. Hosts Ki Sung and Katrina Schwartz introduce listeners to educators, researchers, parents and students who are developing effective ways to improve how kids learn. We cover topics like how fed-up administrators are developing surprising tactics to deal with classroom disruptions; how listening to podcasts are helping kids develop reading skills; the consequences of overparenting; and why interdisciplinary learning can engage students on all ends of the traditional achievement spectrum. This podcast is part of the MindShift education site, a division of KQED News. KQED is an NPR/PBS member station based in San Francisco. You can also visit the MindShift website for episodes and supplemental blog posts or tweet us \u003ca href=\"https://twitter.com/MindShiftKQED\">@MindShiftKQED\u003c/a> or visit us at \u003ca href=\"/mindshift\">MindShift.KQED.org\u003c/a>",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Mindshift-Podcast-Tile-703x703-1.jpg",
"imageAlt": "KQED MindShift: How We Will Learn",
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"meta": {
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"order": 12
},
"link": "/podcasts/mindshift",
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"google": "https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM1NzY0NjAwNDI5",
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"morning-edition": {
"id": "morning-edition",
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"info": "\u003cem>Morning Edition\u003c/em> takes listeners around the country and the world with multi-faceted stories and commentaries every weekday. Hosts Steve Inskeep, David Greene and Rachel Martin bring you the latest breaking news and features to prepare you for the day.",
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"onourwatch": {
"id": "onourwatch",
"title": "On Our Watch",
"tagline": "Deeply-reported investigative journalism",
"info": "For decades, the process for how police police themselves has been inconsistent – if not opaque. In some states, like California, these proceedings were completely hidden. After a new police transparency law unsealed scores of internal affairs files, our reporters set out to examine these cases and the shadow world of police discipline. On Our Watch brings listeners into the rooms where officers are questioned and witnesses are interrogated to find out who this system is really protecting. Is it the officers, or the public they've sworn to serve?",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/On-Our-Watch-Podcast-Tile-703x703-1.jpg",
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"order": 11
},
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"on-the-media": {
"id": "on-the-media",
"title": "On The Media",
"info": "Our weekly podcast explores how the media 'sausage' is made, casts an incisive eye on fluctuations in the marketplace of ideas, and examines threats to the freedom of information and expression in America and abroad. For one hour a week, the show tries to lift the veil from the process of \"making media,\" especially news media, because it's through that lens that we see the world and the world sees us",
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},
"link": "/radio/program/on-the-media",
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},
"pbs-newshour": {
"id": "pbs-newshour",
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"info": "Analysis, background reports and updates from the PBS NewsHour putting today's news in context.",
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"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/PBS-News-Hour-Podcast-Tile-360x360-1.jpg",
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"apple": "https://itunes.apple.com/us/podcast/pbs-newshour-full-show/id394432287?mt=2",
"tuneIn": "https://tunein.com/radio/PBS-NewsHour---Full-Show-p425698/",
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},
"perspectives": {
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"order": 14
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"planet-money": {
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"info": "The economy explained. Imagine you could call up a friend and say, Meet me at the bar and tell me what's going on with the economy. Now imagine that's actually a fun evening.",
"airtime": "SUN 3pm-4pm",
"imageSrc": "https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/planetmoney.jpg",
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},
"link": "/radio/program/planet-money",
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"apple": "https://itunes.apple.com/us/podcast/planet-money/id290783428?mt=2",
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},
"politicalbreakdown": {
"id": "politicalbreakdown",
"title": "Political Breakdown",
"tagline": "Politics from a personal perspective",
"info": "Political Breakdown is a new series that explores the political intersection of California and the nation. Each week hosts Scott Shafer and Marisa Lagos are joined with a new special guest to unpack politics -- with personality — and offer an insider’s glimpse at how politics happens.",
"airtime": "THU 6:30pm-7pm",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Political-Breakdown-2024-Podcast-Tile-703x703-1.jpg",
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"order": 5
},
"link": "/podcasts/politicalbreakdown",
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"possible": {
"id": "possible",
"title": "Possible",
"info": "Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. Possible paints an optimistic portrait of the world we can create through science, policy, business, art and our shared humanity. It asks: What if everything goes right for once? How can we get there? Each episode also includes a short fiction story generated by advanced AI GPT-4, serving as a thought-provoking springboard to speculate how humanity could leverage technology for good.",
"airtime": "SUN 2pm",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Possible-Podcast-Tile-360x360-1.jpg",
"officialWebsiteLink": "https://www.possible.fm/",
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"source": "Possible"
},
"link": "/radio/program/possible",
"subscribe": {
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"spotify": "https://open.spotify.com/show/730YpdUSNlMyPQwNnyjp4k"
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},
"pri-the-world": {
"id": "pri-the-world",
"title": "PRI's The World: Latest Edition",
"info": "Each weekday, host Marco Werman and his team of producers bring you the world's most interesting stories in an hour of radio that reminds us just how small our planet really is.",
"airtime": "MON-FRI 2pm-3pm",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/The-World-Podcast-Tile-360x360-1.jpg",
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},
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