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"content": "\u003cp>Three of the dirtiest words in health care are “fee for service.”\u003c/p>\n\u003cp>For years, U.S. officials have sought to move Medicare away from paying doctors and hospitals for each task they perform, a costly approach that rewards the quantity of care over quality. State Medicaid programs and private insurers are pursuing similar changes.\u003c/p>\n\u003cp>Yet the \u003ca href=\"http://californiahealthline.org/news/tab-for-single-payer-proposal-in-california-could-run-400-billion/\">$400 billion single-payer proposal\u003c/a> that’s advancing in the California legislature would restore fee-for-service to its once-dominant perch in California.\u003c/p>\n\u003cp>A \u003ca href=\"https://assets.documentcloud.org/documents/3728610/SB-0562.pdf\">state Senate analysis\u003c/a> released last week warned that fee-for-service and other provisions in the legislation would “strongly limit the state’s ability to control costs.” Cost containment will be key in persuading lawmakers and the public to support the increased taxes that would be necessary to finance this ambitious, universal health care system for 39 million Californians.\u003c/p>\n\u003cp>Several health experts expressed skepticism about the bill’s prospects in its current form.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“Single-payer has its pros and cons, but if it’s built on the foundation of fee-for-service it will be a disaster,” said Stephen Shortell, dean emeritus of the School of Public Health at the University of California-Berkeley. “It would be a huge step backwards in delivering health care.”\u003c/p>\n\u003cp>[contextly_sidebar id=\"TJaQ7ImJONsaQhBNKC359DYzk8X4H5t4\"]\u003c/p>\n\u003cp>Paul Ginsburg, a health economist and professor at the University of Southern California, agreed and said the legislation reads like something out of the 1960s in terms of how it wants to reimburse providers.\u003c/p>\n\u003cp>“There’s broad consensus we ought to go from volume to value. This bill ignores all the signs pointing to progress and advocates a system that failed,” he said.\u003c/p>\n\u003cp>Backers of the \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201720180SB562\">Healthy California proposal\u003c/a> are pushing for a vote in the Senate by Friday so the legislation can go to the state Assembly and remain in play for this year’s session.\u003c/p>\n\u003cp>The authors say that their single-payer proposal won’t rely entirely on old-fashioned fee-for-service and that there’s plenty of time for the bill to be amended. According to the authors, some of the criticism in the legislative analysis reflects a misreading of the bill: It would, they say, include some use of managed care.\u003c/p>\n\u003cp>In managed care organizations such as HMOs, providers receive a lump sum every month based on how many people they have enrolled. The idea is to encourage providers to offer preventive care and to scrutinize every test or treatment, since they bear the losses if they go over budget.\u003c/p>\n\u003cp>More than other states, California embraced this approach. In its Medicaid program, about 80 percent of enrollees are in managed care.\u003c/p>\n\u003cp>Michael Lighty, director of public policy for the California Nurses Association/National Nurses United, the lead sponsor of the California bill said “it will be a mixed-payment approach. Per capita payments are envisioned in this system.”\u003c/p>\n\u003cp>“We want to address how different payment methodologies work before mandating specifics in the bill,” he added.\u003c/p>\n\u003cp>Lighty said more provisions to curtail costs will be added shortly.\u003c/p>\n\u003cp>As opposition builds over congressional efforts to dismantle the Affordable Care Act, progressives in California and New York have responded to the ACA repeal threat by \u003ca href=\"http://nymag.com/daily/intelligencer/2017/05/new-york-and-california-consider-single-payer-health-care.html?mid=twitter-share-di\">crafting proposals\u003c/a> for universal coverage. (Such efforts failed earlier in Vermont and Colorado.)\u003c/p>\n\u003cp>Single-payer supporters are tapping into Americans’ deep dissatisfaction with the high costs and red tape embedded in the current hodgepodge of private insurance and public programs. But some defenders of the existing national health law say single-payer proposals are a costly distraction from the immediate fight in Washington over the health care safety net that millions of Americans rely on.\u003c/p>\n\u003cp>The California legislation, \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201720180SB562\">Senate Bill 562\u003c/a>, requires that payments to providers be made on a “fee-for-service basis unless and until another payment methodology is established by the [Healthy California] board,” according to the bill.\u003c/p>\n\u003cp>It says health care delivery systems can choose to be paid on a capitated basis. But the analysis by the state Senate Appropriations Committee said it may be difficult for the single-payer program to establish such a payment system because of other features in the law, such as patients’ ability to see any provider with no referral necessary. A \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billAnalysisClient.xhtml?bill_id=201720180SB562\">report in April\u003c/a> from the state Senate Health Committee made a similar determination, saying multiple provisions in this bill “would make cost control unlikely to occur.”\u003c/p>\n\u003cp>The bill doesn’t address other innovative approaches being rolled out across California and the country. For instance, Medicare and private insurers are shifting to “bundled payments” for knee and hip surgeries, in which providers are paid a set fee for all treatment. More physician groups and hospitals are forming accountable care organizations (ACOs), which try to coordinate care within a budget.\u003c/p>\n\u003cp>While fee-for-service medicine can lead to excessive spending, Lighty said, ACOs and other “pay-for-performance” initiatives haven’t been entirely effective at reining in costs either.\u003c/p>\n\u003cp>The California bill faces another daunting challenge: coming up with the estimated $400 billion annually required to pay for universal coverage. Existing government money used for health care could cover half of that amount, but the other half may need to come from payroll taxes on workers and employers — not a politically palatable prospect. (The taxes could be offset in some measure by reduced health spending by employers and workers.)\u003c/p>\n\u003cp>Every Californian, regardless of age, employment or immigration status, would be eligible for coverage and there would be no premiums, copayments or deductibles. In addition, patients could see any willing provider without a referral and receive any service deemed medically appropriate.\u003c/p>\n\u003cp>Those factors would make it difficult for the program to use “drug formularies, prior authorization requirements or other utilization management tools,” the Senate analysts wrote. As a result, they estimated that health care utilization may increase by 10 percent compared to fee-for-service in Medi-Cal, the state’s Medicaid program.\u003c/p>\n\u003cp>At a hearing May 22, state Sen. Jim Nielsen (R-Tehama) said the single-payer proposal appears to invite patients to “come in for what’s almost like a blank check.”\u003c/p>\n\u003cp>State Sen. Ricardo Lara (D-Bell Gardens), a chief sponsor of the bill, acknowledged the concern and said he’s looking at what single-payer systems outside the U.S. do to contain costs.\u003c/p>\n\u003cp>The bill’s sponsors are opposed to the proliferation of narrow insurance networks that exclude providers to keep costs down. But the Senate analysis said that approach means the state couldn’t use potential exclusion from the single-payer system as a means of negotiating favorable prices, as health insurers often do.\u003c/p>\n\u003cp>Lighty said significant costs can be pared from the current system in other ways. For instance, consumers will no longer subsidize lavish salaries for hospital CEOs and excessive profits because reimbursements will be tied to “efficiently providing health care services.”\u003c/p>\n\u003cp>Lara said eliminating the middleman role of health insurers and consolidating the state’s purchasing power would lead to huge savings. “By pooling health care funds in a publicly run fund, we get the bargaining power of the seventh-largest economy in the world,” he said.\u003c/p>\n\u003cp>Insurers and brokers in California and nationwide oppose single-payer proposals because they could literally put them out of business. And legislative analysts and health policy experts question whether California would be able to exert sufficient bargaining power. They noted the political constraints that Medicare has faced in flexing its market power on prices.\u003c/p>\n\u003cp>“Our system of government may mean single-payer is much less successful than in other countries,” Ginsburg said. “We are so open to lobbying it means we can’t count on some of the very strong actions other countries have taken to keep costs down.”\u003c/p>\n\u003cp>This story was produced by \u003ca href=\"http://khn.org/\">Kaiser Health News\u003c/a>, which publishes \u003ca href=\"http://www.californiahealthline.org/\">California Healthline\u003c/a>, an editorially independent service of the \u003ca href=\"http://www.chcf.org/\">California Health Care Foundation\u003c/a>.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003ca href=\"http://www.kaiserhealthnews.org/\">Kaiser Health News\u003c/a> (KHN) is a national health policy news service. It is an editorially independent program of the \u003ca href=\"http://www.kff.org/\">Henry J. Kaiser Family Foundation\u003c/a>.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“Single-payer has its pros and cons, but if it’s built on the foundation of fee-for-service it will be a disaster,” said Stephen Shortell, dean emeritus of the School of Public Health at the University of California-Berkeley. “It would be a huge step backwards in delivering health care.”\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Paul Ginsburg, a health economist and professor at the University of Southern California, agreed and said the legislation reads like something out of the 1960s in terms of how it wants to reimburse providers.\u003c/p>\n\u003cp>“There’s broad consensus we ought to go from volume to value. This bill ignores all the signs pointing to progress and advocates a system that failed,” he said.\u003c/p>\n\u003cp>Backers of the \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201720180SB562\">Healthy California proposal\u003c/a> are pushing for a vote in the Senate by Friday so the legislation can go to the state Assembly and remain in play for this year’s session.\u003c/p>\n\u003cp>The authors say that their single-payer proposal won’t rely entirely on old-fashioned fee-for-service and that there’s plenty of time for the bill to be amended. According to the authors, some of the criticism in the legislative analysis reflects a misreading of the bill: It would, they say, include some use of managed care.\u003c/p>\n\u003cp>In managed care organizations such as HMOs, providers receive a lump sum every month based on how many people they have enrolled. The idea is to encourage providers to offer preventive care and to scrutinize every test or treatment, since they bear the losses if they go over budget.\u003c/p>\n\u003cp>More than other states, California embraced this approach. In its Medicaid program, about 80 percent of enrollees are in managed care.\u003c/p>\n\u003cp>Michael Lighty, director of public policy for the California Nurses Association/National Nurses United, the lead sponsor of the California bill said “it will be a mixed-payment approach. Per capita payments are envisioned in this system.”\u003c/p>\n\u003cp>“We want to address how different payment methodologies work before mandating specifics in the bill,” he added.\u003c/p>\n\u003cp>Lighty said more provisions to curtail costs will be added shortly.\u003c/p>\n\u003cp>As opposition builds over congressional efforts to dismantle the Affordable Care Act, progressives in California and New York have responded to the ACA repeal threat by \u003ca href=\"http://nymag.com/daily/intelligencer/2017/05/new-york-and-california-consider-single-payer-health-care.html?mid=twitter-share-di\">crafting proposals\u003c/a> for universal coverage. (Such efforts failed earlier in Vermont and Colorado.)\u003c/p>\n\u003cp>Single-payer supporters are tapping into Americans’ deep dissatisfaction with the high costs and red tape embedded in the current hodgepodge of private insurance and public programs. But some defenders of the existing national health law say single-payer proposals are a costly distraction from the immediate fight in Washington over the health care safety net that millions of Americans rely on.\u003c/p>\n\u003cp>The California legislation, \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201720180SB562\">Senate Bill 562\u003c/a>, requires that payments to providers be made on a “fee-for-service basis unless and until another payment methodology is established by the [Healthy California] board,” according to the bill.\u003c/p>\n\u003cp>It says health care delivery systems can choose to be paid on a capitated basis. But the analysis by the state Senate Appropriations Committee said it may be difficult for the single-payer program to establish such a payment system because of other features in the law, such as patients’ ability to see any provider with no referral necessary. A \u003ca href=\"https://leginfo.legislature.ca.gov/faces/billAnalysisClient.xhtml?bill_id=201720180SB562\">report in April\u003c/a> from the state Senate Health Committee made a similar determination, saying multiple provisions in this bill “would make cost control unlikely to occur.”\u003c/p>\n\u003cp>The bill doesn’t address other innovative approaches being rolled out across California and the country. For instance, Medicare and private insurers are shifting to “bundled payments” for knee and hip surgeries, in which providers are paid a set fee for all treatment. More physician groups and hospitals are forming accountable care organizations (ACOs), which try to coordinate care within a budget.\u003c/p>\n\u003cp>While fee-for-service medicine can lead to excessive spending, Lighty said, ACOs and other “pay-for-performance” initiatives haven’t been entirely effective at reining in costs either.\u003c/p>\n\u003cp>The California bill faces another daunting challenge: coming up with the estimated $400 billion annually required to pay for universal coverage. Existing government money used for health care could cover half of that amount, but the other half may need to come from payroll taxes on workers and employers — not a politically palatable prospect. (The taxes could be offset in some measure by reduced health spending by employers and workers.)\u003c/p>\n\u003cp>Every Californian, regardless of age, employment or immigration status, would be eligible for coverage and there would be no premiums, copayments or deductibles. In addition, patients could see any willing provider without a referral and receive any service deemed medically appropriate.\u003c/p>\n\u003cp>Those factors would make it difficult for the program to use “drug formularies, prior authorization requirements or other utilization management tools,” the Senate analysts wrote. As a result, they estimated that health care utilization may increase by 10 percent compared to fee-for-service in Medi-Cal, the state’s Medicaid program.\u003c/p>\n\u003cp>At a hearing May 22, state Sen. Jim Nielsen (R-Tehama) said the single-payer proposal appears to invite patients to “come in for what’s almost like a blank check.”\u003c/p>\n\u003cp>State Sen. Ricardo Lara (D-Bell Gardens), a chief sponsor of the bill, acknowledged the concern and said he’s looking at what single-payer systems outside the U.S. do to contain costs.\u003c/p>\n\u003cp>The bill’s sponsors are opposed to the proliferation of narrow insurance networks that exclude providers to keep costs down. But the Senate analysis said that approach means the state couldn’t use potential exclusion from the single-payer system as a means of negotiating favorable prices, as health insurers often do.\u003c/p>\n\u003cp>Lighty said significant costs can be pared from the current system in other ways. For instance, consumers will no longer subsidize lavish salaries for hospital CEOs and excessive profits because reimbursements will be tied to “efficiently providing health care services.”\u003c/p>\n\u003cp>Lara said eliminating the middleman role of health insurers and consolidating the state’s purchasing power would lead to huge savings. “By pooling health care funds in a publicly run fund, we get the bargaining power of the seventh-largest economy in the world,” he said.\u003c/p>\n\u003cp>Insurers and brokers in California and nationwide oppose single-payer proposals because they could literally put them out of business. And legislative analysts and health policy experts question whether California would be able to exert sufficient bargaining power. They noted the political constraints that Medicare has faced in flexing its market power on prices.\u003c/p>\n\u003cp>“Our system of government may mean single-payer is much less successful than in other countries,” Ginsburg said. “We are so open to lobbying it means we can’t count on some of the very strong actions other countries have taken to keep costs down.”\u003c/p>\n\u003cp>This story was produced by \u003ca href=\"http://khn.org/\">Kaiser Health News\u003c/a>, which publishes \u003ca href=\"http://www.californiahealthline.org/\">California Healthline\u003c/a>, an editorially independent service of the \u003ca href=\"http://www.chcf.org/\">California Health Care Foundation\u003c/a>.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cp>A rare outbreak of botulism has hospitalized nine people and killed one man in northern California, health officials say.\u003c/p>\n\u003cp>The outbreak began early last month when several people fell ill after eating nacho cheese sauce bought at a gas station in Walnut Grove, just outside Sacramento.\u003c/p>\n\u003cp>Health officials removed four batches of nacho cheese sauce from the Valley Oak Food and Fuel gas station on May 5. Now, that cheese has tested positive for the botulinum toxin, the California Department of Public Health \u003ca href=\"https://www.cdph.ca.gov/Programs/OPA/Pages/NR17-047.aspx\">says\u003c/a>.\u003c/p>\n\u003cp>In a statement issued Monday, the department said it “believes there is no continuing risk to the public.”\u003c/p>\n\u003cp>The man who died, Martin Galindo, had been in the hospital for several weeks before his death, according to a \u003ca href=\"https://www.gofundme.com/support-for-martins-recovery\">GoFundMe page\u003c/a> created by his family. He had been on a ventilator and eventually fell into a coma.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Botulism is \u003ca href=\"https://www.cdc.gov/botulism/\">caused by\u003c/a> a toxin secreted by the bacterium \u003cem>Clostridium botulinum. \u003c/em>The toxin attacks the nervous system, causing blurry vision, slurred speech, paralysis and difficulty breathing. In about 3 to 5 percent of cases, botulism is fatal, even when it’s treated with antitoxin.\u003c/p>\n\u003cp>Botulism is rare these days. Each year, there only about 20 cases in adults, linked to food poisoning, \u003ca href=\"https://www.cdc.gov/botulism/surveillance.html\">according to\u003c/a> the Centers for Disease Control and Prevention.\u003c/p>\n\u003cp>The source is often \u003ca href=\"https://www.cdc.gov/botulism/consumer.html\">home-canned food\u003c/a>, although sometimes the toxin does show up in retail products, like chopped garlic in oil, carrot juice and \u003ca href=\"https://www.fda.gov/newsevents/publichealthfocus/ucm179201.htm\">chili pepper sauce\u003c/a>.\u003c/p>\n\u003cp>“As we head into the summer barbecue season, both indoor and outdoor chefs need to be on guard against all foodborne illnesses,” said Dr. Karen Smith of the California Department of Public Health in a \u003ca href=\"https://www.cdph.ca.gov/Programs/OPA/Pages/NR17-047.aspx\">statement\u003c/a> Monday.\u003c/p>\n\u003cp>The U.S. Department of Agriculture gives detailed \u003ca href=\"http://nchfp.uga.edu/publications/publications_usda.html\">instructions\u003c/a> for how to can foods safely, and the CDC has a list of recommendations to help prevent botulism in your canned food. For example:\u003c/p>\n\u003cul>\n\u003cli>Store the food at 50 to 70 degrees Fahrenheit before opening.\u003c/li>\n\u003cli>Use the food within one year after canning.\u003c/li>\n\u003cli>Don’t use cans that are swollen, cracked or squirt liquid or foam when you open them.\u003c/li>\n\u003cli>Boil foods low in acid for 10 minutes before eating. These foods include asparagus, beets, green beans, potatoes, some tomatoes, seafood and meat. High temperature will inactivate the toxin.\u003c/li>\n\u003c/ul>\n\u003cp>\u003c/p>\n\u003cp>For retail products, store oils infused with garlic, chili sauces and canned cheeses in the refrigerator. And don’t use them after their expiration dates.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg decoding=\"async\" src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Nacho+Cheese+Sauce+Tainted+With+Botulism+Kills+California+Man&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>A rare outbreak of botulism has hospitalized nine people and killed one man in northern California, health officials say.\u003c/p>\n\u003cp>The outbreak began early last month when several people fell ill after eating nacho cheese sauce bought at a gas station in Walnut Grove, just outside Sacramento.\u003c/p>\n\u003cp>Health officials removed four batches of nacho cheese sauce from the Valley Oak Food and Fuel gas station on May 5. Now, that cheese has tested positive for the botulinum toxin, the California Department of Public Health \u003ca href=\"https://www.cdph.ca.gov/Programs/OPA/Pages/NR17-047.aspx\">says\u003c/a>.\u003c/p>\n\u003cp>In a statement issued Monday, the department said it “believes there is no continuing risk to the public.”\u003c/p>\n\u003cp>The man who died, Martin Galindo, had been in the hospital for several weeks before his death, according to a \u003ca href=\"https://www.gofundme.com/support-for-martins-recovery\">GoFundMe page\u003c/a> created by his family. He had been on a ventilator and eventually fell into a coma.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Botulism is \u003ca href=\"https://www.cdc.gov/botulism/\">caused by\u003c/a> a toxin secreted by the bacterium \u003cem>Clostridium botulinum. \u003c/em>The toxin attacks the nervous system, causing blurry vision, slurred speech, paralysis and difficulty breathing. In about 3 to 5 percent of cases, botulism is fatal, even when it’s treated with antitoxin.\u003c/p>\n\u003cp>Botulism is rare these days. Each year, there only about 20 cases in adults, linked to food poisoning, \u003ca href=\"https://www.cdc.gov/botulism/surveillance.html\">according to\u003c/a> the Centers for Disease Control and Prevention.\u003c/p>\n\u003cp>The source is often \u003ca href=\"https://www.cdc.gov/botulism/consumer.html\">home-canned food\u003c/a>, although sometimes the toxin does show up in retail products, like chopped garlic in oil, carrot juice and \u003ca href=\"https://www.fda.gov/newsevents/publichealthfocus/ucm179201.htm\">chili pepper sauce\u003c/a>.\u003c/p>\n\u003cp>“As we head into the summer barbecue season, both indoor and outdoor chefs need to be on guard against all foodborne illnesses,” said Dr. Karen Smith of the California Department of Public Health in a \u003ca href=\"https://www.cdph.ca.gov/Programs/OPA/Pages/NR17-047.aspx\">statement\u003c/a> Monday.\u003c/p>\n\u003cp>The U.S. Department of Agriculture gives detailed \u003ca href=\"http://nchfp.uga.edu/publications/publications_usda.html\">instructions\u003c/a> for how to can foods safely, and the CDC has a list of recommendations to help prevent botulism in your canned food. For example:\u003c/p>\n\u003cul>\n\u003cli>Store the food at 50 to 70 degrees Fahrenheit before opening.\u003c/li>\n\u003cli>Use the food within one year after canning.\u003c/li>\n\u003cli>Don’t use cans that are swollen, cracked or squirt liquid or foam when you open them.\u003c/li>\n\u003cli>Boil foods low in acid for 10 minutes before eating. These foods include asparagus, beets, green beans, potatoes, some tomatoes, seafood and meat. High temperature will inactivate the toxin.\u003c/li>\n\u003c/ul>\n\u003cp>\u003c/p>\n\u003cp>For retail products, store oils infused with garlic, chili sauces and canned cheeses in the refrigerator. And don’t use them after their expiration dates.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg decoding=\"async\" src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Nacho+Cheese+Sauce+Tainted+With+Botulism+Kills+California+Man&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>It would cost the state of California an estimated $400 billion per year to cover all of its 39 million residents, according to a staff analysis by the state's Senate Appropriation Committee. That's more than twice the state's total annual budget of $180 billion.\u003c/p>\n\u003cp>But the main legislative advocate for single-payer, \u003ca href=\"http://sd33.senate.ca.gov/\" target=\"_blank\" rel=\"noopener noreferrer\">Senator Ricardo Lara\u003c/a> (D-Bell Gardens), explained the state could get access to half of that amount, $200 billion, by shifting over what it already spends on Medicare, Medi-Cal and other state-run health services. That assumes the federal government would agree to let California re-route federal funds in that way.\u003c/p>\n\u003cp>\"The fiscal estimates are subject to enormous uncertainty,\" said Nick Louizos, vice president of legislative affairs for the \u003ca href=\"http://www.calhealthplans.org/index.html\" target=\"_blank\" rel=\"noopener noreferrer\">California Association of Health Plans\u003c/a>. \"If a combination of assumptions don't come through, this could be even more expensive than we even think.\"\u003c/p>\n\u003cp>To raise the other $200 billion, the state could implement a 15 percent payroll tax, according to the analysis, which was released Monday during a Senate Appropriations Committee in Sacramento. It's unclear how that tax might be split between the employer and the employee.\u003c/p>\n\u003cp>\"Given this picture of increasing costs, health care inefficiency, and the uncertainty created by Republicans in Congress, it is critical that California chart our own path,\" said Lara at the committee hearing.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"It will eliminate the need for insurance companies and their administrative costs and profits,\" he added. \"Doctors and hospitals will no longer need to negotiate rates and deals with insurance companies to seek reimbursement.\"\u003c/p>\n\u003cp>At the hearing, Kyle Thayer, a paramedic who works in San Diego, urged the legislators to move forward with the plan.\u003c/p>\n\u003cp>“I see every single day the people that don’t have health coverage and the things that happen. Often they choose between one medicine and another, and end up in the back of my ambulance for something as simple as high-blood pressure medication,\" said Thayer, a resident of Carlsbad.\u003c/p>\n\u003cp>His concerns were personal as well as professional, he said.\u003c/p>\n\u003cp>“My fiancee’s mother was trying to manage her blood pressure, and for a time wasn’t taking her medication, and she ended up with a stroke in the emergency room,\" said Thayer. \"It cost them all kinds of money.”\u003c/p>\n\u003cp>Opponents of the plan also spoke, including Karen Sarkissian from the California Chamber of Commerce, who called the 15 percent payroll tax a \"job killer,\" and a line of representatives from private health insurance companies. These companies would see their business model collapse in California in the face of a single-payer plan, which would be state-administered and not-for-profit.\u003c/p>\n\u003cp>“We don’t need to go backwards and start from scratch. This bill could have catastrophic implications for the health care system in our state,” said Teresa Stark, the chief lobbyist for Kaiser Permanente in California, which covers 8.5 million Californians.\u003c/p>\n\u003cp>\"We share the goal of health care for all,\" she explained, but added that a single-payer system would \"dismantle Kaiser Permanente as we know it.\"\u003c/p>\n\u003cp> \u003c/p>\n\u003cp>[docCloudTestLPW]\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>April Dembosky contributed reporting.\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>It would cost the state of California an estimated $400 billion per year to cover all of its 39 million residents, according to a staff analysis by the state's Senate Appropriation Committee. That's more than twice the state's total annual budget of $180 billion.\u003c/p>\n\u003cp>But the main legislative advocate for single-payer, \u003ca href=\"http://sd33.senate.ca.gov/\" target=\"_blank\" rel=\"noopener noreferrer\">Senator Ricardo Lara\u003c/a> (D-Bell Gardens), explained the state could get access to half of that amount, $200 billion, by shifting over what it already spends on Medicare, Medi-Cal and other state-run health services. That assumes the federal government would agree to let California re-route federal funds in that way.\u003c/p>\n\u003cp>\"The fiscal estimates are subject to enormous uncertainty,\" said Nick Louizos, vice president of legislative affairs for the \u003ca href=\"http://www.calhealthplans.org/index.html\" target=\"_blank\" rel=\"noopener noreferrer\">California Association of Health Plans\u003c/a>. \"If a combination of assumptions don't come through, this could be even more expensive than we even think.\"\u003c/p>\n\u003cp>To raise the other $200 billion, the state could implement a 15 percent payroll tax, according to the analysis, which was released Monday during a Senate Appropriations Committee in Sacramento. It's unclear how that tax might be split between the employer and the employee.\u003c/p>\n\u003cp>\"Given this picture of increasing costs, health care inefficiency, and the uncertainty created by Republicans in Congress, it is critical that California chart our own path,\" said Lara at the committee hearing.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"It will eliminate the need for insurance companies and their administrative costs and profits,\" he added. \"Doctors and hospitals will no longer need to negotiate rates and deals with insurance companies to seek reimbursement.\"\u003c/p>\n\u003cp>At the hearing, Kyle Thayer, a paramedic who works in San Diego, urged the legislators to move forward with the plan.\u003c/p>\n\u003cp>“I see every single day the people that don’t have health coverage and the things that happen. Often they choose between one medicine and another, and end up in the back of my ambulance for something as simple as high-blood pressure medication,\" said Thayer, a resident of Carlsbad.\u003c/p>\n\u003cp>His concerns were personal as well as professional, he said.\u003c/p>\n\u003cp>“My fiancee’s mother was trying to manage her blood pressure, and for a time wasn’t taking her medication, and she ended up with a stroke in the emergency room,\" said Thayer. \"It cost them all kinds of money.”\u003c/p>\n\u003cp>Opponents of the plan also spoke, including Karen Sarkissian from the California Chamber of Commerce, who called the 15 percent payroll tax a \"job killer,\" and a line of representatives from private health insurance companies. These companies would see their business model collapse in California in the face of a single-payer plan, which would be state-administered and not-for-profit.\u003c/p>\n\u003cp>“We don’t need to go backwards and start from scratch. This bill could have catastrophic implications for the health care system in our state,” said Teresa Stark, the chief lobbyist for Kaiser Permanente in California, which covers 8.5 million Californians.\u003c/p>\n\u003cp>\"We share the goal of health care for all,\" she explained, but added that a single-payer system would \"dismantle Kaiser Permanente as we know it.\"\u003c/p>\n\u003cp> \u003c/p>\n\u003cp>[docCloudTestLPW]\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>April Dembosky contributed reporting.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>Closures and consolidations have been increasing among community clinics that provide reproductive health services.\u003c/p>\n\u003cp>Two beloved women’s clinics in San Francisco are consolidating with outside partners in order to keep operating. Another two, in Santa Rosa and Sacramento, have shut their doors. All four were unintended casualties of the Affordable Care Act, which shifted payments and changed incentives throughout California's health industry.\u003c/p>\n\u003cp>Because of the health law, more women in California have coverage for a full range of health services through Medi-Cal. As a result, many of those women are now going to a regular doctor or primary care center for their family planning needs, instead of a dedicated women’s clinic. In addition, the state is paying these clinics \u003ca href=\"http://audio.californiareport.org/archive/R201401031630/c\">less money under Obamacare\u003c/a>.\u003c/p>\n\u003cp>“Of course, I love the Affordable Care Act, but it was very harmful to reproductive health clinics,” said \u003ca href=\"https://obgyn.ucsf.edu/san-francisco-general-hospital/rebecca-jackson-md\" target=\"_blank\" rel=\"noopener noreferrer\">Dr. Rebecca Jackson\u003c/a>, director of New Generation, a teen clinic in San Francisco's Mission neighborhood. New Generation announced last spring it would have to close, but then UCSF agreed to \u003ca href=\"https://ww2.kqed.org/stateofhealth/2016/05/11/uc-san-francisco-drops-plans-to-close-mission-clinic/\">fund it one more year\u003c/a>.\u003c/p>\n\u003cp>This week, managers announced the next steps to ensure the clinic's ongoing survival. New Generation will move into a smaller, shared office; partner with the city’s Department of Public Health to cover administrative costs such as billing and medical records; and continue intensive and urgent fund-raising efforts in the private sector.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“That allows us to get long-term sustainability that we didn't have as a free-standing clinic,” Jackson said.\u003c/p>\n\u003cp>In Sacramento, \u003ca href=\"https://www.womenshealthspecialists.org/\" target=\"_blank\" rel=\"noopener noreferrer\">Women’s Health Specialists\u003c/a> couldn’t get the numbers to work and shut down last month. Their Santa Rosa location closed two years ago. Outgoing director Shauna Heckert warned the same could happen to the three remaining clinics in Grass Valley, Chico, and Redding if the state doesn’t increase Medi-Cal reimbursements. That's something Governor Jerry Brown has \u003ca href=\"http://audio.californiareport.org/archive/R201509020850/b\">refused to do for years\u003c/a>.\u003c/p>\n\u003cp>“Number one, raising rates for poor people's health care is not popular,” Heckert explained. “Number two, raising rates for reproductive health — that includes abortion and chlamydia [and] gonorrhea — is certainly not something people even feel comfortable talking about.”\u003c/p>\n\u003cp>Women’s clinics are now lobbying state lawmakers, asking them to direct some of the revenues from the newly-passed tobacco tax specifically to them. The Legislature must pass the state budget by June 15th.\u003c/p>\n\u003cp>But the Women’s Community Clinic in San Francisco couldn’t wait to see what might happen with the state budget. The clinic, which had \u003ca href=\"http://womenscommunityclinic.org/who-we-are/history/\" target=\"_blank\" rel=\"noopener noreferrer\">previously suffered\u003c/a> a temporary closure and re-organization in 1999, announced a merger this week with\u003ca href=\"https://www.healthright360.org/\" target=\"_blank\" rel=\"noopener noreferrer\"> HealthRight360\u003c/a>, a statewide nonprofit health system.\u003c/p>\n\u003cp>Carlina Hansen, the clinic's executive director, explained that the Women’s Community Clinic had lost some federal grants. But she noted that the merger with HealthRight360 will also benefit her patients: in addition to family planning, they'll be able to access primary care, mental health services and addiction treatment.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>“It was not all about money,” said Hansen, who will step down from running the clinic after 17 years. “It was really also about adapting, to do better for our clients in the future.”\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Closures and consolidations have been increasing among community clinics that provide reproductive health services.\u003c/p>\n\u003cp>Two beloved women’s clinics in San Francisco are consolidating with outside partners in order to keep operating. Another two, in Santa Rosa and Sacramento, have shut their doors. All four were unintended casualties of the Affordable Care Act, which shifted payments and changed incentives throughout California's health industry.\u003c/p>\n\u003cp>Because of the health law, more women in California have coverage for a full range of health services through Medi-Cal. As a result, many of those women are now going to a regular doctor or primary care center for their family planning needs, instead of a dedicated women’s clinic. In addition, the state is paying these clinics \u003ca href=\"http://audio.californiareport.org/archive/R201401031630/c\">less money under Obamacare\u003c/a>.\u003c/p>\n\u003cp>“Of course, I love the Affordable Care Act, but it was very harmful to reproductive health clinics,” said \u003ca href=\"https://obgyn.ucsf.edu/san-francisco-general-hospital/rebecca-jackson-md\" target=\"_blank\" rel=\"noopener noreferrer\">Dr. Rebecca Jackson\u003c/a>, director of New Generation, a teen clinic in San Francisco's Mission neighborhood. New Generation announced last spring it would have to close, but then UCSF agreed to \u003ca href=\"https://ww2.kqed.org/stateofhealth/2016/05/11/uc-san-francisco-drops-plans-to-close-mission-clinic/\">fund it one more year\u003c/a>.\u003c/p>\n\u003cp>This week, managers announced the next steps to ensure the clinic's ongoing survival. New Generation will move into a smaller, shared office; partner with the city’s Department of Public Health to cover administrative costs such as billing and medical records; and continue intensive and urgent fund-raising efforts in the private sector.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“That allows us to get long-term sustainability that we didn't have as a free-standing clinic,” Jackson said.\u003c/p>\n\u003cp>In Sacramento, \u003ca href=\"https://www.womenshealthspecialists.org/\" target=\"_blank\" rel=\"noopener noreferrer\">Women’s Health Specialists\u003c/a> couldn’t get the numbers to work and shut down last month. Their Santa Rosa location closed two years ago. Outgoing director Shauna Heckert warned the same could happen to the three remaining clinics in Grass Valley, Chico, and Redding if the state doesn’t increase Medi-Cal reimbursements. That's something Governor Jerry Brown has \u003ca href=\"http://audio.californiareport.org/archive/R201509020850/b\">refused to do for years\u003c/a>.\u003c/p>\n\u003cp>“Number one, raising rates for poor people's health care is not popular,” Heckert explained. “Number two, raising rates for reproductive health — that includes abortion and chlamydia [and] gonorrhea — is certainly not something people even feel comfortable talking about.”\u003c/p>\n\u003cp>Women’s clinics are now lobbying state lawmakers, asking them to direct some of the revenues from the newly-passed tobacco tax specifically to them. The Legislature must pass the state budget by June 15th.\u003c/p>\n\u003cp>But the Women’s Community Clinic in San Francisco couldn’t wait to see what might happen with the state budget. The clinic, which had \u003ca href=\"http://womenscommunityclinic.org/who-we-are/history/\" target=\"_blank\" rel=\"noopener noreferrer\">previously suffered\u003c/a> a temporary closure and re-organization in 1999, announced a merger this week with\u003ca href=\"https://www.healthright360.org/\" target=\"_blank\" rel=\"noopener noreferrer\"> HealthRight360\u003c/a>, a statewide nonprofit health system.\u003c/p>\n\u003cp>Carlina Hansen, the clinic's executive director, explained that the Women’s Community Clinic had lost some federal grants. But she noted that the merger with HealthRight360 will also benefit her patients: in addition to family planning, they'll be able to access primary care, mental health services and addiction treatment.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>“It was not all about money,” said Hansen, who will step down from running the clinic after 17 years. “It was really also about adapting, to do better for our clients in the future.”\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Fearing Deportation, Parents Worry About Enrolling Undocumented Kids In Medi-Cal",
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"content": "\u003cp>Luz felt relieved and grateful when she learned that her 16-year-old son qualified for full coverage under Medi-Cal. Now, she worries that the information she provided to the government health program could put her family at risk of deportation.\u003c/p>\n\u003cp>Luz’s son is one of nearly 190,000 children who have enrolled in Medi-Cal since California opened it to undocumented children last year. Luz, her husband and her son came to Merced, California, from Mexico without papers about 10 years ago. Luz asked that the family’s last name not be used, for fear of being identified by federal immigration authorities.\u003c/p>\n\u003cp>In the current political climate, immigration and health advocates worry that children, like Luz’s son, will drop out of Medi-Cal and that new kids won’t enroll out of concern that personal information may be used to deport families.\u003c/p>\n\u003cp>Luz would need to renew her son’s coverage in October, but she remains undecided even though the program paid for his hospital visit when he injured a foot. “I’m still thinking about it,” she said.\u003c/p>\n\u003cp>Last May, the state Department of Health Care Services (DHCS) implemented the new “Health For All Kids” law allowing California children under 19 to receive full Medi-Cal benefits, including dental care and mental health, regardless of their immigration status. Previously, undocumented children could receive only emergency care through Medi-Cal.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>California followed Illinois, Massachusetts, New York, Washington and the District of Columbia in offering state-supported health coverage to children in the country illegally.\u003c/p>\n\u003cp>Medi-Cal is California’s version of the federal Medicaid program for people with low incomes. The federal government pays for a significant portion of the California program, as it does for all states. But coverage for undocumented kids is entirely funded by the state.\u003c/p>\n\u003cp>From last May to through April 6, 189,434 undocumented children signed up for the program, according to the most recent state data. The health care services department estimates that another 61,000 children are eligible but not enrolled. Advocates say now is the time for a push to sign up these “harder-to-reach” children and to encourage those already in the program to stay.\u003c/p>\n\u003cp>Immigrant families have become more reluctant to share personal information with government programs because of the Trump administration’s planned changes in health care and immigration policies, according to a \u003ca href=\"https://www.childrennow.org/files/6714/9374/6391/H4AK-SurveyUPDATE_4_25_17FINAL.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">recent survey\u003c/a> of 62 individuals working for pediatric practices, community clinics, local public health departments and hospitals serving immigrant communities throughout the state.\u003c/p>\n\u003cp>Immigrants are also increasingly skipping doctor appointments because of similar concerns, according to the survey, conducted in March by the advocacy group Children Now.\u003c/p>\n\u003cp>Kelly Hardy, Children Now’s managing director of health policy, said some families even have \u003ca href=\"http://californiahealthline.org/news/some-immigrants-fearful-of-political-climate-shy-away-from-medi-cal/\" target=\"_blank\" rel=\"noopener noreferrer\">sought to withdraw\u003c/a> their children from the Medi-Cal program because they fear that their immigration status might be shared with immigration officials.\u003c/p>\n\u003cp>“Holding on to the kids who have recently enrolled is going to become critically important,” Hardy said. She said she hopes families will see that the coverage is a boon to their health and will not be scared away.\u003c/p>\n\u003cp>In an email last week, the DHCS reiterated to California Healthline that an applicant’s immigration status is “only used for the purposes of determining Medi-Cal eligibility.”\u003c/p>\n\u003cp>But that doesn’t eliminate the worry for some parents.\u003c/p>\n\u003cp>“This fear is horrible. We don’t know who to trust,” Luz said.\u003c/p>\n\u003cp>Before the coverage-for-all law took effect last year, undocumented children could get coverage through the Healthy Kids insurance program in some California counties. However, many of those children have been transferred to Medi-Cal, and the Healthy Kids programs are closing down.\u003c/p>\n\u003cp>Carlos Jimenez, a health policy advocate at the Mixteco Community Organizing Project in Oxnard, Calif., said the nonprofit doubled its enrollment assistance efforts after the law was implemented.\u003c/p>\n\u003cp>Community health educators known as \u003cem>promotoras\u003c/em>, spread word about the new law in farm fields, in front of supermarkets and outside churches. Last year, enrollment counselors saw up to 400 people a month who had questions about Medi-Cal, the majority looking to enroll their children, Jimenez said.\u003c/p>\n\u003cp>But after the November presidential election, enrollment counselors at Mixteco saw the number of people seeking help drop by nearly half, Jimenez said. Staffers had expected more inquiries about renewals by now, he said.\u003c/p>\n\u003cp>Most people ask whether enrolling an undocumented child would bring any problems with the U.S. Immigration and Customs Enforcement agency, Jimenez said. “We tell them their information is safe. But even then, they’re afraid.”\u003c/p>\n\u003cp>The Children Now survey showed that participants had questions about the future of Medi-Cal for undocumented children — in particular, whether it would continue if the Affordable Care Act were replaced.\u003c/p>\n\u003cp>In an \u003ca href=\"http://californiahealthline.org/news/qa-efforts-to-extend-health-coverage-to-undocumented-immigrants/\" target=\"_blank\" rel=\"noopener noreferrer\">interview\u003c/a> with California Healthline in February, Sen. Ricardo Lara (D-Bell Gardens), who authored the Health for All Kids law, said there was no reason for people to be concerned about the program’s durability.\u003c/p>\n\u003cp>Democratic Gov. Jerry Brown continues to make this program a priority, Lara said, noting that California is spending \u003ca href=\"http://www.ebudget.ca.gov/2017-18/pdf/GovernorsBudget/4000/4260.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">$279.5 million\u003c/a> to continue benefits for undocumented kids this year. That’s up from the $188 million it provided for the program last year.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Health advocates in California are hoping to extend the program to young adults. Earlier this month, the California Immigrant Policy Center and Health Access California, launched an online \u003ca href=\"https://act.myngp.com/Forms/7315664987463485440\" target=\"_blank\" rel=\"noopener noreferrer\">petition\u003c/a> requesting that full Medi-Cal benefits be made available to people ages 19 to 26.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Luz felt relieved and grateful when she learned that her 16-year-old son qualified for full coverage under Medi-Cal. Now, she worries that the information she provided to the government health program could put her family at risk of deportation.\u003c/p>\n\u003cp>Luz’s son is one of nearly 190,000 children who have enrolled in Medi-Cal since California opened it to undocumented children last year. Luz, her husband and her son came to Merced, California, from Mexico without papers about 10 years ago. Luz asked that the family’s last name not be used, for fear of being identified by federal immigration authorities.\u003c/p>\n\u003cp>In the current political climate, immigration and health advocates worry that children, like Luz’s son, will drop out of Medi-Cal and that new kids won’t enroll out of concern that personal information may be used to deport families.\u003c/p>\n\u003cp>Luz would need to renew her son’s coverage in October, but she remains undecided even though the program paid for his hospital visit when he injured a foot. “I’m still thinking about it,” she said.\u003c/p>\n\u003cp>Last May, the state Department of Health Care Services (DHCS) implemented the new “Health For All Kids” law allowing California children under 19 to receive full Medi-Cal benefits, including dental care and mental health, regardless of their immigration status. Previously, undocumented children could receive only emergency care through Medi-Cal.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>California followed Illinois, Massachusetts, New York, Washington and the District of Columbia in offering state-supported health coverage to children in the country illegally.\u003c/p>\n\u003cp>Medi-Cal is California’s version of the federal Medicaid program for people with low incomes. The federal government pays for a significant portion of the California program, as it does for all states. But coverage for undocumented kids is entirely funded by the state.\u003c/p>\n\u003cp>From last May to through April 6, 189,434 undocumented children signed up for the program, according to the most recent state data. The health care services department estimates that another 61,000 children are eligible but not enrolled. Advocates say now is the time for a push to sign up these “harder-to-reach” children and to encourage those already in the program to stay.\u003c/p>\n\u003cp>Immigrant families have become more reluctant to share personal information with government programs because of the Trump administration’s planned changes in health care and immigration policies, according to a \u003ca href=\"https://www.childrennow.org/files/6714/9374/6391/H4AK-SurveyUPDATE_4_25_17FINAL.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">recent survey\u003c/a> of 62 individuals working for pediatric practices, community clinics, local public health departments and hospitals serving immigrant communities throughout the state.\u003c/p>\n\u003cp>Immigrants are also increasingly skipping doctor appointments because of similar concerns, according to the survey, conducted in March by the advocacy group Children Now.\u003c/p>\n\u003cp>Kelly Hardy, Children Now’s managing director of health policy, said some families even have \u003ca href=\"http://californiahealthline.org/news/some-immigrants-fearful-of-political-climate-shy-away-from-medi-cal/\" target=\"_blank\" rel=\"noopener noreferrer\">sought to withdraw\u003c/a> their children from the Medi-Cal program because they fear that their immigration status might be shared with immigration officials.\u003c/p>\n\u003cp>“Holding on to the kids who have recently enrolled is going to become critically important,” Hardy said. She said she hopes families will see that the coverage is a boon to their health and will not be scared away.\u003c/p>\n\u003cp>In an email last week, the DHCS reiterated to California Healthline that an applicant’s immigration status is “only used for the purposes of determining Medi-Cal eligibility.”\u003c/p>\n\u003cp>But that doesn’t eliminate the worry for some parents.\u003c/p>\n\u003cp>“This fear is horrible. We don’t know who to trust,” Luz said.\u003c/p>\n\u003cp>Before the coverage-for-all law took effect last year, undocumented children could get coverage through the Healthy Kids insurance program in some California counties. However, many of those children have been transferred to Medi-Cal, and the Healthy Kids programs are closing down.\u003c/p>\n\u003cp>Carlos Jimenez, a health policy advocate at the Mixteco Community Organizing Project in Oxnard, Calif., said the nonprofit doubled its enrollment assistance efforts after the law was implemented.\u003c/p>\n\u003cp>Community health educators known as \u003cem>promotoras\u003c/em>, spread word about the new law in farm fields, in front of supermarkets and outside churches. Last year, enrollment counselors saw up to 400 people a month who had questions about Medi-Cal, the majority looking to enroll their children, Jimenez said.\u003c/p>\n\u003cp>But after the November presidential election, enrollment counselors at Mixteco saw the number of people seeking help drop by nearly half, Jimenez said. Staffers had expected more inquiries about renewals by now, he said.\u003c/p>\n\u003cp>Most people ask whether enrolling an undocumented child would bring any problems with the U.S. Immigration and Customs Enforcement agency, Jimenez said. “We tell them their information is safe. But even then, they’re afraid.”\u003c/p>\n\u003cp>The Children Now survey showed that participants had questions about the future of Medi-Cal for undocumented children — in particular, whether it would continue if the Affordable Care Act were replaced.\u003c/p>\n\u003cp>In an \u003ca href=\"http://californiahealthline.org/news/qa-efforts-to-extend-health-coverage-to-undocumented-immigrants/\" target=\"_blank\" rel=\"noopener noreferrer\">interview\u003c/a> with California Healthline in February, Sen. Ricardo Lara (D-Bell Gardens), who authored the Health for All Kids law, said there was no reason for people to be concerned about the program’s durability.\u003c/p>\n\u003cp>Democratic Gov. Jerry Brown continues to make this program a priority, Lara said, noting that California is spending \u003ca href=\"http://www.ebudget.ca.gov/2017-18/pdf/GovernorsBudget/4000/4260.pdf\" target=\"_blank\" rel=\"noopener noreferrer\">$279.5 million\u003c/a> to continue benefits for undocumented kids this year. That’s up from the $188 million it provided for the program last year.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>Health advocates in California are hoping to extend the program to young adults. Earlier this month, the California Immigrant Policy Center and Health Access California, launched an online \u003ca href=\"https://act.myngp.com/Forms/7315664987463485440\" target=\"_blank\" rel=\"noopener noreferrer\">petition\u003c/a> requesting that full Medi-Cal benefits be made available to people ages 19 to 26.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>The Senate is negotiating its own legislation to repeal and replace much of the Affordable Care Act in secret talks with senators hand-picked by party leaders and with no plans for committee hearings to publicly vet the bill.\u003c/p>\n\u003cp>\"I am encouraged by what we are seeing in the Senate. We're seeing senators leading,\" said Sen. Ted Cruz, R-Texas, one of the 13 Republicans involved in the private talks. \"We're seeing senators working together in good faith. We're not seeing senators throwing rocks at each other, either in private or in the press.\"\u003c/p>\n\u003cp>Senate Democrats have a different take. \"Your morning reminder that under the cloud cover of the FBI story, 13 GOP Senators are still secretly writing a bill to destroy the ACA,\" Sen. Chris Murphy, D-Conn., \u003ca href=\"https://twitter.com/ChrisMurphyCT/status/864089871270457345\">tweeted\u003c/a> Monday morning.\u003c/p>\n\u003cp>Senate Republicans have shrugged away criticism about their decision to avoid action in committees in favor of closely guarded meetings in the U.S. Capitol to craft legislation to repeal and replace key pillars of President Barack Obama's health care law and reshape Medicaid.\u003c/p>\n\u003cp>The working group has met four times, and it plans to continue to meet every Tuesday and Thursday. So far, its strategy appears to be selectively suggesting potential provisions of the legislation to the media.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>For instance, Sen. John Thune, R-S.D., has \u003ca href=\"http://www.politico.com/story/2017/05/12/senate-obamacare-repeal-tax-credits-238290\">floated\u003c/a> pegging tax credits to help Americans buy health insurance to their income instead of their age like it does in the House version of the bill.\u003c/p>\n\u003cp>While the fallout over President Trump's decision to fire FBI Director James Comey consumes the news cycle, it has not had an impact on Republicans' health care talks. A GOP aide for a senator involved in the talks said it has even given the Senate some breathing room to negotiate with so much attention focused elsewhere.\u003c/p>\n\u003cp>Senate Majority Leader Mitch McConnell formed the negotiating team to take the lead on crafting health care legislation that can ultimately win the support of at least 50 of the chamber's 52 Republicans. No Democrats are expected to support any potential GOP health care bill. The legislation is moving under special budget rules known as reconciliation, which means it is not subject to usual filibuster rules and cannot be blocked by the minority party.\u003c/p>\n\u003cp>Republicans ditched the House-passed bill in pursuit of their own legislation, although the two chambers share the broad goals of repealing the ACA's individual mandates and taxes, restricting access to abortion services and overhauling the Medicaid system from an open-ended federal guarantee that covers costs to a system that gives states more flexibility to spend an allotted amount of money.\u003c/p>\n\u003cp>Conservatives like Cruz are also laying down what they say is a key marker for whether a bill can pass the Senate: \"Do premiums go up, or do they go down?\" Cruz said.\u003c/p>\n\u003cp>Sen. Ron Johnson, R-Wis., told reporters last week that Republicans are still in the early planning phase of crafting a bill. \"We still need to agree on those goals and find out what's achievable,\" he said. Like Cruz, Johnson said for him lowering premiums is a top goal and he wants to repeal as much of the ACA as possible under the Senate's more strict budget rules.\u003c/p>\n\u003cp>Early talks suggest Republicans are optimistic they can ultimately pass a bill by the August recess. \"We've got a group of 52 Republican senators, all of us want to get to 'yes,'\" Johnson said.\u003c/p>\n\u003cp>Sens. Susan Collins, R-Maine, and Bill Cassidy, R-La., have introduced their own health care plan, and they have been prominent voices in the debate, but they were excluded from the health care working group.\u003c/p>\n\u003cp>Republicans were roundly criticized for not including any women in their core group, but the Republican women in the Senate who were asked about the omission said they didn't mind. \"It doesn't bother me, the leaders have the right to choose whoever they wish,\" said Collins. \"It doesn't mean that I'm not going to work on health care.\"\u003c/p>\n\u003cp>Cassidy and Collins have been moderating voices in the health care debate, and their support or opposition could be critical to Republicans' success.\u003c/p>\n\u003cp>The Cassidy-Collins proposal would let states keep the ACA, also known as Obamacare, in place if they wanted to, and it leaves in place the ACA's taxes and fees to have revenue streams to pay for their health care overhaul. However, their plan doesn't enjoy support among conservatives who don't believe it goes far enough to repeal and replace Obamacare — the party's signature campaign pledge.\u003c/p>\n\u003cp>The duo has been reaching out to Democrats, but Cassidy said his efforts have been rejected. Democrats see no policy or political upside to working with Republicans to dismantle the ACA. \"Let me phrase this carefully. I've had seven or eight meetings with Democrats either in their office, maybe once my office or on the floor, and that was the consistent message I got,\" Cassidy said.\u003c/p>\n\u003cp>Most Republicans see no political advantage to attempting to craft bipartisan legislation that could aid vulnerable Red State Senate Democrats heading in to the midterm elections. In other words, there is mutual disinterest in bipartisanship when it comes to the fundamentals of Obamacare.\u003c/p>\n\u003cp>The GOP health care talks are expected to roll through the summer months in the Senate. The long-term strategy — according to senior GOP aides in both the House and Senate — is to pass a Senate bill and send it back to the House for an up-or-down vote.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>While House passage of their bill was hailed by the president in an unusual Rose Garden ceremony earlier this month, Republicans are still a long way away from fulfilling their campaign promises on health care. \u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Secret+Republican+Senate+Talks+Are+Shaping+Health+Care+Legislation&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>The Senate is negotiating its own legislation to repeal and replace much of the Affordable Care Act in secret talks with senators hand-picked by party leaders and with no plans for committee hearings to publicly vet the bill.\u003c/p>\n\u003cp>\"I am encouraged by what we are seeing in the Senate. We're seeing senators leading,\" said Sen. Ted Cruz, R-Texas, one of the 13 Republicans involved in the private talks. \"We're seeing senators working together in good faith. We're not seeing senators throwing rocks at each other, either in private or in the press.\"\u003c/p>\n\u003cp>Senate Democrats have a different take. \"Your morning reminder that under the cloud cover of the FBI story, 13 GOP Senators are still secretly writing a bill to destroy the ACA,\" Sen. Chris Murphy, D-Conn., \u003ca href=\"https://twitter.com/ChrisMurphyCT/status/864089871270457345\">tweeted\u003c/a> Monday morning.\u003c/p>\n\u003cp>Senate Republicans have shrugged away criticism about their decision to avoid action in committees in favor of closely guarded meetings in the U.S. Capitol to craft legislation to repeal and replace key pillars of President Barack Obama's health care law and reshape Medicaid.\u003c/p>\n\u003cp>The working group has met four times, and it plans to continue to meet every Tuesday and Thursday. So far, its strategy appears to be selectively suggesting potential provisions of the legislation to the media.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>For instance, Sen. John Thune, R-S.D., has \u003ca href=\"http://www.politico.com/story/2017/05/12/senate-obamacare-repeal-tax-credits-238290\">floated\u003c/a> pegging tax credits to help Americans buy health insurance to their income instead of their age like it does in the House version of the bill.\u003c/p>\n\u003cp>While the fallout over President Trump's decision to fire FBI Director James Comey consumes the news cycle, it has not had an impact on Republicans' health care talks. A GOP aide for a senator involved in the talks said it has even given the Senate some breathing room to negotiate with so much attention focused elsewhere.\u003c/p>\n\u003cp>Senate Majority Leader Mitch McConnell formed the negotiating team to take the lead on crafting health care legislation that can ultimately win the support of at least 50 of the chamber's 52 Republicans. No Democrats are expected to support any potential GOP health care bill. The legislation is moving under special budget rules known as reconciliation, which means it is not subject to usual filibuster rules and cannot be blocked by the minority party.\u003c/p>\n\u003cp>Republicans ditched the House-passed bill in pursuit of their own legislation, although the two chambers share the broad goals of repealing the ACA's individual mandates and taxes, restricting access to abortion services and overhauling the Medicaid system from an open-ended federal guarantee that covers costs to a system that gives states more flexibility to spend an allotted amount of money.\u003c/p>\n\u003cp>Conservatives like Cruz are also laying down what they say is a key marker for whether a bill can pass the Senate: \"Do premiums go up, or do they go down?\" Cruz said.\u003c/p>\n\u003cp>Sen. Ron Johnson, R-Wis., told reporters last week that Republicans are still in the early planning phase of crafting a bill. \"We still need to agree on those goals and find out what's achievable,\" he said. Like Cruz, Johnson said for him lowering premiums is a top goal and he wants to repeal as much of the ACA as possible under the Senate's more strict budget rules.\u003c/p>\n\u003cp>Early talks suggest Republicans are optimistic they can ultimately pass a bill by the August recess. \"We've got a group of 52 Republican senators, all of us want to get to 'yes,'\" Johnson said.\u003c/p>\n\u003cp>Sens. Susan Collins, R-Maine, and Bill Cassidy, R-La., have introduced their own health care plan, and they have been prominent voices in the debate, but they were excluded from the health care working group.\u003c/p>\n\u003cp>Republicans were roundly criticized for not including any women in their core group, but the Republican women in the Senate who were asked about the omission said they didn't mind. \"It doesn't bother me, the leaders have the right to choose whoever they wish,\" said Collins. \"It doesn't mean that I'm not going to work on health care.\"\u003c/p>\n\u003cp>Cassidy and Collins have been moderating voices in the health care debate, and their support or opposition could be critical to Republicans' success.\u003c/p>\n\u003cp>The Cassidy-Collins proposal would let states keep the ACA, also known as Obamacare, in place if they wanted to, and it leaves in place the ACA's taxes and fees to have revenue streams to pay for their health care overhaul. However, their plan doesn't enjoy support among conservatives who don't believe it goes far enough to repeal and replace Obamacare — the party's signature campaign pledge.\u003c/p>\n\u003cp>The duo has been reaching out to Democrats, but Cassidy said his efforts have been rejected. Democrats see no policy or political upside to working with Republicans to dismantle the ACA. \"Let me phrase this carefully. I've had seven or eight meetings with Democrats either in their office, maybe once my office or on the floor, and that was the consistent message I got,\" Cassidy said.\u003c/p>\n\u003cp>Most Republicans see no political advantage to attempting to craft bipartisan legislation that could aid vulnerable Red State Senate Democrats heading in to the midterm elections. In other words, there is mutual disinterest in bipartisanship when it comes to the fundamentals of Obamacare.\u003c/p>\n\u003cp>The GOP health care talks are expected to roll through the summer months in the Senate. The long-term strategy — according to senior GOP aides in both the House and Senate — is to pass a Senate bill and send it back to the House for an up-or-down vote.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>While House passage of their bill was hailed by the president in an unusual Rose Garden ceremony earlier this month, Republicans are still a long way away from fulfilling their campaign promises on health care. \u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Secret+Republican+Senate+Talks+Are+Shaping+Health+Care+Legislation&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Going For $1 An Ounce: The Burgeoning Trade In Mothers’ Milk",
"title": "Going For $1 An Ounce: The Burgeoning Trade In Mothers’ Milk",
"headTitle": "California Healthline | State of Health | KQED News",
"content": "\u003cp>PALM SPRINGS, Calif. — Rebecca Soltes walked into a gaily decorated hospital meeting room, pushing her kids in a double stroller and carrying a soft-sided cooler filled with bags of frozen breast milk — 100 ounces of the stuff.\u003c/p>\n\u003cp>She dropped it on a table, and the roomful of lactation consultants and maternal health advocates from California’s Inland Empire erupted in applause.\u003c/p>\n\u003cp>She was donating the milk because she didn’t need it anymore. Her son, a young toddler, had recently graduated to solid food, but her freezer at home was still packed with pumped milk.\u003c/p>\n\u003cp>“I didn’t know what to do with it,” a harried-looking Soltes told two young staffers from the \u003ca href=\"http://www.mothersmilk.org\">Mothers’ Milk Bank\u003c/a>, a nonprofit group in San Jose, Calif., that provides breast milk for fragile infants in neonatal intensive care units (NICUs).\u003c/p>\n\u003cp>Increasing numbers of women who produce more breast milk than they need are handing it over — or selling it — for others to use. It’s a boon to fragile infants and mothers who can’t produce enough milk, but it also poses challenging ethical and public health questions.\u003c/p>\n\u003cdiv class=\"side-by-side\">\n\u003cdiv class=\"alignleft wp-caption\">\n\t\t\t\t\t\t\t\t\t\u003cimg width=\"770\" height=\"513\" src=\"https://kaiserhealthnews.files.wordpress.com/2017/04/breast-milk-9_770.jpg?w=770&h=513&crop=1\" class=\"attachment-khn-article-large size-khn-article-large\" alt=\"\">\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\n\u003cp class=\"wp-caption-text\">A breast milk fair, where the milk is collected for fragile infants in neonatal intensive care units, was held in Palm Springs, Calif., in August 2016. (Heidi de Marco/California KHN)\u003c/p>\n\u003c/div>\n\u003cdiv class=\"alignright wp-caption\">\n\t\t\t\t\t\t\t\t\t\u003cimg width=\"770\" height=\"513\" src=\"https://kaiserhealthnews.files.wordpress.com/2017/04/breast-milk-8_770.jpg?w=770&h=513&crop=1\" class=\"attachment-khn-article-large size-khn-article-large\" alt=\"\">\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\n\u003cp class=\"wp-caption-text\">Christina Beltran, who recently had a baby, signs up to receive more information at the Palm Springs breast milk donation fair. (Heidi de Marco/KHN)\u003c/p>\n\u003c/div>\n\u003c/div>\n\u003cp>\u003c!--side-by-side-->\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Physicians, regulators and others ask: Should sickly, premature babies get access to this milk before healthy ones? Should women be paid for their milk — even if it might lead some to deprive their own infants? Should greater safeguards be required to ensure the safety of the supply?\u003c/p>\n\u003cp>The \u003ca href=\"https://www.fda.gov/scienceresearch/specialtopics/pediatrictherapeuticsresearch/ucm235203.htm\">Food and Drug Administration\u003c/a> does not require testing for donated human milk. A handful of states, including California and New York, regulate milk banks the way they do tissue banks, enforcing some safety standards, and many nonprofit milk banks screen donors.\u003c/p>\n\u003cp>But the FDA has expressed concern about milk-trading websites, \u003ca href=\"http://www.aappublications.org/content/32/2/6.1\">warning consumers\u003c/a> that the milk offered there carries an increased risk of contamination by drugs or disease, including HIV. The agency further urges mothers not to feed their infants donated milk acquired from other individuals or over the internet, also because of such safety risks.\u003c/p>\n\u003cp>Some companies and medical experts wonder if even established milk banks — whose voluntary screening practices the FDA praised in 2010 — should be doing more to ensure safety. Dr. Jae Hong Kim, a neonatologist at UC-San Diego, said milk banks’ safety efforts have worked well thus far but are not error-free. “The challenge is, if you expand the operations, you increase your risk exposure,” he said.\u003c/p>\n\u003cp>Scott Elster, CEO of Prolacta Bioscience, a company that uses human milk to make fortifier products in its pharmaceutical-grade manufacturing facility, said he advocates a more rigorous level of screening.\u003c/p>\n\u003cp>“We believe that all human milk, whether it is distributed commercially, by a nonprofit or peer-to-peer network, should be tested for drugs of abuse, nicotine and other adulterants,” he said.\u003c/p>\n\u003cp>Milk Magic\u003c/p>\n\u003cp>As recently as the early 1970s, barely a fifth of American babies were breast-fed. Today, \u003ca href=\"https://www.cdc.gov/breastfeeding/pdf/2016breastfeedingreportcard.pdf\">more than 80%\u003c/a> get at least a taste of their mother’s milk, according to the federal Centers for Disease Control and Prevention. The health advantages are well-established, especially for premature infants.\u003c/p>\n\u003cp>“The first class I had on human milk I was blown away,” said Maryanne Perrin, a nutrition scientist at the University of North Carolina-Greensboro. “It’s Harry Potter meets Willy Wonka. It’s a magical food.”\u003c/p>\n\u003cp> The Food and Drug Administration does not require testing for donated human milk. A handful of states, including California and New York, regulate milk banks as they do tissue banks. (Heidi de Marco/KHN)\u003c/p>\n\u003cp>Some breast-feeding enthusiasts refer to human milk as “liquid gold.” At times, it seems as though everyone wants the stuff — from nonprofits like Mothers’ Milk Bank, to high-tech pharmaceutical companies that concentrate it into premium medical products, to your neighbor who might just want a bit more to supplement her baby’s diet.\u003c/p>\n\u003cp>Each year, new human milk banks open and new milk-focused companies are launched.\u003c/p>\n\u003cp>No one knows exactly how much of this excess milk is donated or sold, but the volume is increasing. Pauline Sakamoto, executive director of the Mothers’ Milk Bank and former president of the \u003ca href=\"https://www.hmbana.org\">Human Milk Banking Association of North America\u003c/a>, an association of nonprofit milk banks in the U.S. and Canada, said her organization’s affiliated banks distributed about 4.4 million ounces of human milk to hospitals last year, up from less than half that amount as recently as five years ago. When Sakamoto became president of the organization in 2014, it had 18 milk banks. Now it has more than 30 open or planned.\u003c/p>\n\u003cp>To Profit Or Not To Profit?\u003c/p>\n\u003cp>The Mothers’ Milk Bank workers from San Jose traveled nearly 450 miles last year for donation drives in the southern part of the state, including the one at the Desert Regional Medical Center in Palm Springs where they applauded Soltes. The bank collects and pasteurizes donated human milk and provides it at cost to NICUs throughout California.\u003c/p>\n\u003cp>Over the week, workers planned to conduct risk screenings, including blood testing for HIV and other diseases, on mothers like Soltes. They also planned to ask the women’s doctors — and their babies’ doctors — to approve the donations. The team expected to collect 7,542 ounces of pumped breast milk — enough to provide more than 30,000 feedings for premature infants in NICUs.\u003c/p>\n\u003cp>“Right now, we have a consistent flow of milk coming in,” said Leah Carig, donor coordinator at the San Jose-based bank. “In the past, we’ve had to put out [e-mail] blasts” to increase supply.\u003c/p>\n\u003cfigure class=\"layout-lg carousel-article carousel slide carousel-article-1\">\n\u003col class=\"carousel-indicators\">\n\u003cli class=\"active\">\n\u003cli>\n\u003cli>\n\u003c/ol>\n\u003cdiv class=\"carousel-inner\">\n\u003cdiv class=\"item active\">\u003cimg src=\"https://kaiserhealthnews.files.wordpress.com/2017/04/breast-milk-5_770.jpg\" class=\"img-responsive\">\u003cfigcaption class=\"caption carousel-caption\">Prolacta Bioscience purchases breast milk from women for $1 per ounce, tests it rigorously and uses it to make fortifiers that are added to a mother’s or donor’s milk to deliver extra calories, proteins and minerals to premature babies. (Heidi de Marco/KHN)\u003c/figcaption>\u003c/div>\n\u003cdiv class=\"item\">\u003cimg src=\"https://kaiserhealthnews.files.wordpress.com/2017/04/breast-milk-4_770.jpg\" class=\"img-responsive\">\u003cfigcaption class=\"caption carousel-caption\">“We believe that all human milk, whether it is distributed commercially, by a nonprofit or peer-to-peer network, should be tested for drugs of abuse, nicotine and other adulterants,” says Prolacta CEO Scott Elster. (Heidi de Marco/KHN)\u003c/figcaption>\u003c/div>\n\u003cdiv class=\"item\">\u003cimg src=\"https://kaiserhealthnews.files.wordpress.com/2017/04/breast-milk-6_770.jpg\" class=\"img-responsive\">\u003cfigcaption class=\"caption carousel-caption\">Prolacta’s products win praise from NICU physicians because they can replace fortifiers made of cow’s milk, which are known to increase the risk of necrotizing enterocolitis and sepsis. (Heidi de Marco/KHN)\u003c/figcaption>\u003c/div>\n\u003c/div>\n\u003cp>\u003ca class=\"left carousel-control\" href=\".carousel-article.carousel-article-1\">\u003cspan class=\"btn-prev\">\u003c/span>\u003c/a>\u003ca class=\"right carousel-control\" href=\".carousel-article.carousel-article-1\">\u003cspan class=\"btn-next\">\u003c/span>\u003c/a>\u003c/p>\u003c/figure>\n\u003cp>For-profit breast milk operations are expanding, too. Elster’s company, \u003ca href=\"http://www.prolacta.com\">Prolacta Bioscience\u003c/a>, stocks warehouse-like freezers full of human milk.\u003c/p>\n\u003cp>Based in City of Industry, Calif., it purchases the milk from women for $1 per ounce. The company uses it to make fortifiers that are added to a mother’s or donor’s milk to deliver extra calories, proteins and minerals to premature babies.\u003c/p>\n\u003cp>The products are expensive, at $200 to $300 for a one-day supply. But they win praise from NICU physicians like Kim, because they can replace fortifiers made of cow’s milk, which are known to increase the risk of necrotizing enterocolitis and sepsis.\u003c/p>\n\u003cp>Beyond the NICU and the gates of industry, informal internet-based sites, with names like \u003ca href=\"http://www.onlythebreast.com\">Only the Breast\u003c/a> and \u003ca href=\"http://www.eatsonfeets.org\">Eats on Feets\u003c/a>, also \u003ca href=\"http://online.liebertpub.com/doi/abs/10.1089/bfm.2013.0114\">appear to be booming\u003c/a>. One \u003ca href=\"http://www.theverge.com/2015/4/28/8504443/mothers-buying-breast-milk-online-donors-risks\">report\u003c/a> estimated that the number of online milk transactions in the U.S. soared from 22,000 in 2012 to 55,000 in 2015.\u003c/p>\n\u003cp>Some milk-sharing networks are run by mothers who sell their milk, while others give it away.\u003c/p>\n\u003cp>Mandy Lindberg, a board member of the \u003ca href=\"http://www.iebreastfeeding.org/about3\">Inland Empire Breastfeeding Coalition\u003c/a>, has experience with both formal and informal donation networks. She said that women often opt to donate among themselves because they want to help friends or neighbors who don’t have enough milk for their babies.\u003c/p>\n\u003cp>“It’s nice to put a face with the name,” Lindberg said.\u003c/p>\n\u003cp>Research shows there’s some risk with milk that changes hands on informal sites, however. In 2015, a team of researchers who purchased breast milk on the open market \u003ca href=\"http://pediatrics.aappublications.org/content/early/2015/03/31/peds.2014-3554\">reported\u003c/a> in the journal Pediatrics that about 10 percent of samples contained cow’s milk, which could have been added by the sellers to increase volume and thus the size of the payment. The same team had reported in 2013 that milk purchased online was \u003ca href=\"http://pediatrics.aappublications.org/content/early/2013/10/16/peds.2013-1687.full.pdf+html\">frequently contaminated\u003c/a> by pathogenic bacteria.\u003c/p>\n\u003cp>Kim Updegrove, executive director of the nonprofit \u003ca href=\"https://www.milkbank.org\">Mothers’ Milk Bank at Austin\u003c/a>, in Texas, says the FDA should regulate informal milk-sharing, ideally requiring all milk to go through a milk bank focused on distributing it according to the greatest medical need. This, she believes, would help make the practice safer and ensure that the sickest babies were given priority.\u003c/p>\n\u003cp>Updegrove and others fear that if financial gain were to become the dominant factor in distribution of human milk, supplies could be siphoned away from the sickest NICU babies. Poor mothers might sell their milk instead of giving it to their own children, these critics said.\u003c/p>\n\u003cp>Women involved in sharing networks don’t always understand the mission and practices of nonprofit milk banks, Perrin reported with colleagues in a \u003ca href=\"http://jhl.sagepub.com/content/32/2/229.short\">2016 paper\u003c/a> that appeared in the Journal of Human Lactation. Better education might encourage more to donate for NICU use, she suggested.\u003c/p>\n\u003cp>She said that when she started her research, she thought of human milk as a “scarce resource.” “But I’ve talked to women who have shared 9,600 ounces of milk. Some have freezers full,” she said. “I think it’s a distribution problem, and not a supply problem.”\u003c/p>\n\u003cp>The entire concept of breast milk banking — of any type — was new to Soltes. The La Quinta, Calif., mother said that when other members of her breast-feeding group had more milk than they could use, they didn’t know what to do with it. She learned about the milk drive by doing a Google search online.\u003c/p>\n\u003cp>“I just happened to find this event,” she said. “I thought, wow — I’d rather do this than throw it all out.”\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>This story was produced by \u003ca href=\"http://khn.org/\">Kaiser Health News\u003c/a>, which publishes \u003ca href=\"http://www.californiahealthline.org/\">California Healthline\u003c/a>, an editorially independent service of the \u003ca href=\"http://www.chcf.org/\">California Health Care Foundation\u003c/a>.\u003c/p>\n\n",
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"excerpt": "As a fountain of nonprofit milk banks emerge, one woman’s abundant supply can fill another’s yawning demand. But critics fear that poor women will sell start selling their milk for survival, depriving their own babies of vital nutrients.",
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"description": "As a fountain of nonprofit milk banks emerge, one woman’s abundant supply can fill another’s yawning demand. But critics fear that poor women will sell start selling their milk for survival, depriving their own babies of vital nutrients.",
"title": "Going For $1 An Ounce: The Burgeoning Trade In Mothers’ Milk | KQED",
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"nprByline": "\u003ca href=\"http://khn.org/news/author/eryn-brown/\">\u003cstrong>Eryn Brown\u003c/strong>\u003c/a>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>PALM SPRINGS, Calif. — Rebecca Soltes walked into a gaily decorated hospital meeting room, pushing her kids in a double stroller and carrying a soft-sided cooler filled with bags of frozen breast milk — 100 ounces of the stuff.\u003c/p>\n\u003cp>She dropped it on a table, and the roomful of lactation consultants and maternal health advocates from California’s Inland Empire erupted in applause.\u003c/p>\n\u003cp>She was donating the milk because she didn’t need it anymore. Her son, a young toddler, had recently graduated to solid food, but her freezer at home was still packed with pumped milk.\u003c/p>\n\u003cp>“I didn’t know what to do with it,” a harried-looking Soltes told two young staffers from the \u003ca href=\"http://www.mothersmilk.org\">Mothers’ Milk Bank\u003c/a>, a nonprofit group in San Jose, Calif., that provides breast milk for fragile infants in neonatal intensive care units (NICUs).\u003c/p>\n\u003cp>Increasing numbers of women who produce more breast milk than they need are handing it over — or selling it — for others to use. It’s a boon to fragile infants and mothers who can’t produce enough milk, but it also poses challenging ethical and public health questions.\u003c/p>\n\u003cdiv class=\"side-by-side\">\n\u003cdiv class=\"alignleft wp-caption\">\n\t\t\t\t\t\t\t\t\t\u003cimg width=\"770\" height=\"513\" src=\"https://kaiserhealthnews.files.wordpress.com/2017/04/breast-milk-9_770.jpg?w=770&h=513&crop=1\" class=\"attachment-khn-article-large size-khn-article-large\" alt=\"\">\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\n\u003cp class=\"wp-caption-text\">A breast milk fair, where the milk is collected for fragile infants in neonatal intensive care units, was held in Palm Springs, Calif., in August 2016. (Heidi de Marco/California KHN)\u003c/p>\n\u003c/div>\n\u003cdiv class=\"alignright wp-caption\">\n\t\t\t\t\t\t\t\t\t\u003cimg width=\"770\" height=\"513\" src=\"https://kaiserhealthnews.files.wordpress.com/2017/04/breast-milk-8_770.jpg?w=770&h=513&crop=1\" class=\"attachment-khn-article-large size-khn-article-large\" alt=\"\">\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\n\u003cp class=\"wp-caption-text\">Christina Beltran, who recently had a baby, signs up to receive more information at the Palm Springs breast milk donation fair. (Heidi de Marco/KHN)\u003c/p>\n\u003c/div>\n\u003c/div>\n\u003cp>\u003c!--side-by-side-->\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Physicians, regulators and others ask: Should sickly, premature babies get access to this milk before healthy ones? Should women be paid for their milk — even if it might lead some to deprive their own infants? Should greater safeguards be required to ensure the safety of the supply?\u003c/p>\n\u003cp>The \u003ca href=\"https://www.fda.gov/scienceresearch/specialtopics/pediatrictherapeuticsresearch/ucm235203.htm\">Food and Drug Administration\u003c/a> does not require testing for donated human milk. A handful of states, including California and New York, regulate milk banks the way they do tissue banks, enforcing some safety standards, and many nonprofit milk banks screen donors.\u003c/p>\n\u003cp>But the FDA has expressed concern about milk-trading websites, \u003ca href=\"http://www.aappublications.org/content/32/2/6.1\">warning consumers\u003c/a> that the milk offered there carries an increased risk of contamination by drugs or disease, including HIV. The agency further urges mothers not to feed their infants donated milk acquired from other individuals or over the internet, also because of such safety risks.\u003c/p>\n\u003cp>Some companies and medical experts wonder if even established milk banks — whose voluntary screening practices the FDA praised in 2010 — should be doing more to ensure safety. Dr. Jae Hong Kim, a neonatologist at UC-San Diego, said milk banks’ safety efforts have worked well thus far but are not error-free. “The challenge is, if you expand the operations, you increase your risk exposure,” he said.\u003c/p>\n\u003cp>Scott Elster, CEO of Prolacta Bioscience, a company that uses human milk to make fortifier products in its pharmaceutical-grade manufacturing facility, said he advocates a more rigorous level of screening.\u003c/p>\n\u003cp>“We believe that all human milk, whether it is distributed commercially, by a nonprofit or peer-to-peer network, should be tested for drugs of abuse, nicotine and other adulterants,” he said.\u003c/p>\n\u003cp>Milk Magic\u003c/p>\n\u003cp>As recently as the early 1970s, barely a fifth of American babies were breast-fed. Today, \u003ca href=\"https://www.cdc.gov/breastfeeding/pdf/2016breastfeedingreportcard.pdf\">more than 80%\u003c/a> get at least a taste of their mother’s milk, according to the federal Centers for Disease Control and Prevention. The health advantages are well-established, especially for premature infants.\u003c/p>\n\u003cp>“The first class I had on human milk I was blown away,” said Maryanne Perrin, a nutrition scientist at the University of North Carolina-Greensboro. “It’s Harry Potter meets Willy Wonka. It’s a magical food.”\u003c/p>\n\u003cp> The Food and Drug Administration does not require testing for donated human milk. A handful of states, including California and New York, regulate milk banks as they do tissue banks. (Heidi de Marco/KHN)\u003c/p>\n\u003cp>Some breast-feeding enthusiasts refer to human milk as “liquid gold.” At times, it seems as though everyone wants the stuff — from nonprofits like Mothers’ Milk Bank, to high-tech pharmaceutical companies that concentrate it into premium medical products, to your neighbor who might just want a bit more to supplement her baby’s diet.\u003c/p>\n\u003cp>Each year, new human milk banks open and new milk-focused companies are launched.\u003c/p>\n\u003cp>No one knows exactly how much of this excess milk is donated or sold, but the volume is increasing. Pauline Sakamoto, executive director of the Mothers’ Milk Bank and former president of the \u003ca href=\"https://www.hmbana.org\">Human Milk Banking Association of North America\u003c/a>, an association of nonprofit milk banks in the U.S. and Canada, said her organization’s affiliated banks distributed about 4.4 million ounces of human milk to hospitals last year, up from less than half that amount as recently as five years ago. When Sakamoto became president of the organization in 2014, it had 18 milk banks. Now it has more than 30 open or planned.\u003c/p>\n\u003cp>To Profit Or Not To Profit?\u003c/p>\n\u003cp>The Mothers’ Milk Bank workers from San Jose traveled nearly 450 miles last year for donation drives in the southern part of the state, including the one at the Desert Regional Medical Center in Palm Springs where they applauded Soltes. The bank collects and pasteurizes donated human milk and provides it at cost to NICUs throughout California.\u003c/p>\n\u003cp>Over the week, workers planned to conduct risk screenings, including blood testing for HIV and other diseases, on mothers like Soltes. They also planned to ask the women’s doctors — and their babies’ doctors — to approve the donations. The team expected to collect 7,542 ounces of pumped breast milk — enough to provide more than 30,000 feedings for premature infants in NICUs.\u003c/p>\n\u003cp>“Right now, we have a consistent flow of milk coming in,” said Leah Carig, donor coordinator at the San Jose-based bank. “In the past, we’ve had to put out [e-mail] blasts” to increase supply.\u003c/p>\n\u003cfigure class=\"layout-lg carousel-article carousel slide carousel-article-1\">\n\u003col class=\"carousel-indicators\">\n\u003cli class=\"active\">\n\u003cli>\n\u003cli>\n\u003c/ol>\n\u003cdiv class=\"carousel-inner\">\n\u003cdiv class=\"item active\">\u003cimg src=\"https://kaiserhealthnews.files.wordpress.com/2017/04/breast-milk-5_770.jpg\" class=\"img-responsive\">\u003cfigcaption class=\"caption carousel-caption\">Prolacta Bioscience purchases breast milk from women for $1 per ounce, tests it rigorously and uses it to make fortifiers that are added to a mother’s or donor’s milk to deliver extra calories, proteins and minerals to premature babies. (Heidi de Marco/KHN)\u003c/figcaption>\u003c/div>\n\u003cdiv class=\"item\">\u003cimg src=\"https://kaiserhealthnews.files.wordpress.com/2017/04/breast-milk-4_770.jpg\" class=\"img-responsive\">\u003cfigcaption class=\"caption carousel-caption\">“We believe that all human milk, whether it is distributed commercially, by a nonprofit or peer-to-peer network, should be tested for drugs of abuse, nicotine and other adulterants,” says Prolacta CEO Scott Elster. (Heidi de Marco/KHN)\u003c/figcaption>\u003c/div>\n\u003cdiv class=\"item\">\u003cimg src=\"https://kaiserhealthnews.files.wordpress.com/2017/04/breast-milk-6_770.jpg\" class=\"img-responsive\">\u003cfigcaption class=\"caption carousel-caption\">Prolacta’s products win praise from NICU physicians because they can replace fortifiers made of cow’s milk, which are known to increase the risk of necrotizing enterocolitis and sepsis. (Heidi de Marco/KHN)\u003c/figcaption>\u003c/div>\n\u003c/div>\n\u003cp>\u003ca class=\"left carousel-control\" href=\".carousel-article.carousel-article-1\">\u003cspan class=\"btn-prev\">\u003c/span>\u003c/a>\u003ca class=\"right carousel-control\" href=\".carousel-article.carousel-article-1\">\u003cspan class=\"btn-next\">\u003c/span>\u003c/a>\u003c/p>\u003c/figure>\n\u003cp>For-profit breast milk operations are expanding, too. Elster’s company, \u003ca href=\"http://www.prolacta.com\">Prolacta Bioscience\u003c/a>, stocks warehouse-like freezers full of human milk.\u003c/p>\n\u003cp>Based in City of Industry, Calif., it purchases the milk from women for $1 per ounce. The company uses it to make fortifiers that are added to a mother’s or donor’s milk to deliver extra calories, proteins and minerals to premature babies.\u003c/p>\n\u003cp>The products are expensive, at $200 to $300 for a one-day supply. But they win praise from NICU physicians like Kim, because they can replace fortifiers made of cow’s milk, which are known to increase the risk of necrotizing enterocolitis and sepsis.\u003c/p>\n\u003cp>Beyond the NICU and the gates of industry, informal internet-based sites, with names like \u003ca href=\"http://www.onlythebreast.com\">Only the Breast\u003c/a> and \u003ca href=\"http://www.eatsonfeets.org\">Eats on Feets\u003c/a>, also \u003ca href=\"http://online.liebertpub.com/doi/abs/10.1089/bfm.2013.0114\">appear to be booming\u003c/a>. One \u003ca href=\"http://www.theverge.com/2015/4/28/8504443/mothers-buying-breast-milk-online-donors-risks\">report\u003c/a> estimated that the number of online milk transactions in the U.S. soared from 22,000 in 2012 to 55,000 in 2015.\u003c/p>\n\u003cp>Some milk-sharing networks are run by mothers who sell their milk, while others give it away.\u003c/p>\n\u003cp>Mandy Lindberg, a board member of the \u003ca href=\"http://www.iebreastfeeding.org/about3\">Inland Empire Breastfeeding Coalition\u003c/a>, has experience with both formal and informal donation networks. She said that women often opt to donate among themselves because they want to help friends or neighbors who don’t have enough milk for their babies.\u003c/p>\n\u003cp>“It’s nice to put a face with the name,” Lindberg said.\u003c/p>\n\u003cp>Research shows there’s some risk with milk that changes hands on informal sites, however. In 2015, a team of researchers who purchased breast milk on the open market \u003ca href=\"http://pediatrics.aappublications.org/content/early/2015/03/31/peds.2014-3554\">reported\u003c/a> in the journal Pediatrics that about 10 percent of samples contained cow’s milk, which could have been added by the sellers to increase volume and thus the size of the payment. The same team had reported in 2013 that milk purchased online was \u003ca href=\"http://pediatrics.aappublications.org/content/early/2013/10/16/peds.2013-1687.full.pdf+html\">frequently contaminated\u003c/a> by pathogenic bacteria.\u003c/p>\n\u003cp>Kim Updegrove, executive director of the nonprofit \u003ca href=\"https://www.milkbank.org\">Mothers’ Milk Bank at Austin\u003c/a>, in Texas, says the FDA should regulate informal milk-sharing, ideally requiring all milk to go through a milk bank focused on distributing it according to the greatest medical need. This, she believes, would help make the practice safer and ensure that the sickest babies were given priority.\u003c/p>\n\u003cp>Updegrove and others fear that if financial gain were to become the dominant factor in distribution of human milk, supplies could be siphoned away from the sickest NICU babies. Poor mothers might sell their milk instead of giving it to their own children, these critics said.\u003c/p>\n\u003cp>Women involved in sharing networks don’t always understand the mission and practices of nonprofit milk banks, Perrin reported with colleagues in a \u003ca href=\"http://jhl.sagepub.com/content/32/2/229.short\">2016 paper\u003c/a> that appeared in the Journal of Human Lactation. Better education might encourage more to donate for NICU use, she suggested.\u003c/p>\n\u003cp>She said that when she started her research, she thought of human milk as a “scarce resource.” “But I’ve talked to women who have shared 9,600 ounces of milk. Some have freezers full,” she said. “I think it’s a distribution problem, and not a supply problem.”\u003c/p>\n\u003cp>The entire concept of breast milk banking — of any type — was new to Soltes. The La Quinta, Calif., mother said that when other members of her breast-feeding group had more milk than they could use, they didn’t know what to do with it. She learned about the milk drive by doing a Google search online.\u003c/p>\n\u003cp>“I just happened to find this event,” she said. “I thought, wow — I’d rather do this than throw it all out.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>This story was produced by \u003ca href=\"http://khn.org/\">Kaiser Health News\u003c/a>, which publishes \u003ca href=\"http://www.californiahealthline.org/\">California Healthline\u003c/a>, an editorially independent service of the \u003ca href=\"http://www.chcf.org/\">California Health Care Foundation\u003c/a>.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>Partly proud, partly mortified, Principal José Macias of the Sixty-First Street Elementary School in Los Angeles said that yes, it was true – his school had reported the biggest increase in the rate of fully vaccinated kindergarten students in the state. The number of kindergartners who met all vaccination requirements this year jumped by 82 percentage points at the school, according to data released this week.\u003c/p>\n\u003cp>“I’m glad,” Macias said, “but it also tells me we were low.”\u003c/p>\n\u003cp>Parents at Sixty-First Street Elementary support vaccinations for their children, Macias said, but follow-up is sketchy. That’s how the school ended up in 2015-16 with just 12 percent of its kindergartners up-to-date for all vaccinations. The remaining kindergartners – 88 percent of them – were admitted “conditionally” in 2015-16, meaning they had some but not all of the 10 immunizations required by the state, and promised to complete the rest. In 2016-17, the up-to-date vaccination rate for kindergartners at Sixty-First Street Elementary climbed to nearly 95 percent.\u003c/p>\n\u003cp>While Macias’ school reported the most dramatic upturn, new data from the California Department of Public Health show for the first time how individual schools contributed to a statewide increase in kindergarten vaccination rates to 95.6 percent.\u003c/p>\n\u003cp>\u003cem>Search this new \u003ca href=\"https://edsource.org/2017/vaccination-rates-by-school-in-california/580981\" target=\"_blank\">vaccination database\u003c/a>, created by EdSource, a nonprofit news site that focuses on education policy in the state, to see vaccination rates at individual schools.\u003cbr>\n\u003c/em>\u003cbr>\nThe new vaccination law, Senate Bill 277, took effect at the start of this school year, eliminating the ability of a parent to obtain a “personal belief exemption” to opt out of vaccinating their children attending public and private schools. But the removal of the personal belief exemption doesn’t account for the overall rise in vaccination rates, according to a summary report from the California Department of Public Health. Instead, schools and parents started to take immunization far more seriously, health officials say.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>International publicity about the Disneyland measles outbreak of 2014-15 brought the risk of contracting measles, which had been declared eradicated in the United States in 2000, back as a public health threat. As Senate Bill 277, authored by Sen. Richard Pan, D-Sacramento, wound its way through the Capitol, news reports highlighted testimony from parents who vowed never to vaccinate their children and testimony from parents who had seen the ravages of polio. A 6-year-old Marin County boy with leukemia, Rhett Krawitt, became the public face of the debate.\u003c/p>\n\u003cp>And state finance auditors announced they would be looking more closely at schools with high rates of kindergartners who were not fully immunized – who were “conditionally” enrolled – to evaluate whether these students were properly enrolled and legitimately eligible for state per-pupil funding, according to the California Department of Public Health summary report. Students who are not fully vaccinated run the risk of not being allowed to attend school.\u003c/p>\n\u003cp>When the law passed in 2015, staff at many schools launched a full court press to get every eligible incoming kindergartner vaccinated. Collecting immunization paperwork from parents rose to the top of the to-do list. Kimberly Wright, principal of Los Angeles’ Cienega Elementary School, said she made immunizations a permanent agenda item for her meetings with office staff. At the front counter, conversations with parents about vaccinations shifted in tone from a low-key reminder – “well, when you can do it,” Wright said, to “this is really important.” Staff made reminder calls to parents, and Wright kept a list of those with incomplete immunizations on her desk. Increases in vaccination rates at Cienega Elementary rose from 15 percent in 2015-16 to nearly 88 percent up-to-date in 2016-17.\u003c/p>\n\u003cp>“The vocabulary of the personal belief exemption seemed to imply it was a personal choice with only personal implications, when actually the effect on a community could be profound,” said Matt Willis, public health officer for Marin County.\u003c/p>\n\u003cp>Matt Willis, public health officer for Marin County, which had some of the highest rates of personal belief exemptions in the state, said that the debate about vaccinations shifted in Marin in part because of Rhett and his story. Chemotherapy had compromised Rhett’s immune system, making him unable to be vaccinated against certain diseases, and leaving him at risk for catching a disease from unvaccinated classmates. He stood on a wooden chair at a March 2015 meeting of the Marin County Board of Supervisors and urged supervisors to support Senate Bill 277 “so kids like me don’t get sick at school.”\u003c/p>\n\u003cp>“One key was reframing vaccinations entirely as a matter of community responsibility,” Willis said. “The vocabulary of the personal belief exemption seemed to imply it was a personal choice with only personal implications, when actually the effect on a community could be profound.”\u003c/p>\n\u003cp>In addition, Willis surveyed Marin parents in 2013 about their beliefs about vaccinations, and found that most were choosing to vaccinate their children against some but not all of the 10 diseases. “We weren’t necessarily dealing with a community that was frankly against vaccinations,” Willis said. “That offered hope.”\u003c/p>\n\u003cp>At Reed Elementary School, Rhett’s school, the percentage of kindergarten students who are up-to-date with vaccinations went from 92.5 percent in 2015-16 to 97 percent in 2016-17. “It was the education of the community,” said Nancy Lynch, superintendent of Reed Union School District in Marin County. “People stepped up.”\u003c/p>\n\u003cp>Vaccination rates remained low, unsurprisingly, at schools that offer independent study programs or oversee home-schooled students. Students in those programs are not required to be vaccinated, nor are students who receive special education services. Aside from those types of schools, Walnut Avenue Elementary School in Chino Valley Unified had one of the lowest rates of immunizations, with 33 percent of kindergarten students up-to-date on vaccinations in 2016-17. Sixty-seven percent were overdue for vaccinations, meaning they were late getting a scheduled vaccination. According to the California Department of Education, children overdue for one or more required immunizations are subject to exclusion from school until they meet the requirements. \u003c/p>\n\u003cp>Brenda Dunkle, a spokeswoman for Chino Valley Unified, said the district could not comment on vaccination rates because its director of health services is out of the office until early May.\u003c/p>\n\u003cp>In Orange County, Pamela Kahn, coordinator of health and wellness at the Orange County Department of Education, said that education about immunizations unfolded with every news cycle in 2015 as dozens of children and adults, most of whom were unvaccinated, contracted measles after visiting two Disney theme parks in Anaheim. \u003c/p>\n\u003cp>“No. 1 was the Disneyland measles outbreak,” she said. “This brought people’s attention to the fact that this does still happen.”\u003c/p>\n\u003cp>An exodus of students from schools to home schools to avoid vaccinations didn’t occur, Kahn said. “We knew there would be some,” she said, and there were.\u003c/p>\n\u003cp>Along with the statewide increase in the vaccination rate, the rate of medical exemptions also rose, from 0.2 percent to 0.5 percent. A medical exemption requires a letter from a doctor stating the health reasons why a child cannot be vaccinated against certain diseases; there is no official form.\u003c/p>\n\u003cp>“From a medical point of view, there are some letters that are kind of suspicious,” Kahn said. “For example, we get the same exemption letter, with the same language, for different kids, from the same doctor. It could be ‘a familial history of reactions to immunization.’ That could be a cousin, a third cousin. One person wrote that this child was exempt until a date that correlates to high school graduation. That’s odd.”\u003c/p>\n\u003cp>But the schools don’t question the exemption letters, she said. “We were advised that we are not the medical experts,” she said.\u003c/p>\n\u003cp>“I think people are still looking for avenues not to be vaccinated,” said Dr. Kenneth Cutler, public health officer for Nevada County, which also has had pockets of unvaccinated students. Kindergarten vaccination rates for the county reached 81 percent, up from 69 percent about five years ago, he said.\u003c/p>\n\u003cp>Some schools in the county reported high levels of medical exemptions and high levels of personal belief exemptions, which were carried over from last year when the students were in transitional kindergarten. The law states that those exemptions remained valid for kindergarten this year.\u003c/p>\n\u003cp>But Sharyn Turner, school health services coordinator at the office of the Nevada County Superintendent of Schools, said she did see signs of change in what has been a strong anti-vaccination culture at some schools. In those schools, she said, parents who opposed vaccinations shunned some pro-vaccination parents. But Turner’s vaccinated grandson now attends School of the Arts, which has a history of being popular with vaccine opponents, and she said the family has been welcomed. “You are no longer excluded because you vaccinate your child,” she said.\u003c/p>\n\u003cp>Others remain outliers in the vaccination landscape.\u003c/p>\n\u003cp>At the Mountain Oaks School in Calaveras County, where all students are in independent study or home-school programs, supplemented by on-site classes for those who are vaccinated, 39 percent of kindergartners were up-to-date on vaccinations. Fifty-seven percent did not have to be immunized because they are not receiving classroom instruction or they are receiving special education services. An additional 4.5 percent had a medical exemption.\u003c/p>\n\u003cp>Vaccinated students can attend group classes at school, including pottery and algebra, said Anne Colman, administrator of Mountain Oaks School.\u003c/p>\n\u003cp>“Despite that, the percentage of parents who don’t care that their kids can’t take classes at school is really high,” Colman said.\u003c/p>\n\u003cp>Unvaccinated students had to stay home from a recent outdoor adventure school trip, she said. “We’re trying very hard to err on the side of caution,” she said. “I do not want to be the administrator on the 11 o’clock news – ‘Plague outbreak after unvaccinated kids are let in.'”\u003c/p>\n\u003cp>“Our parents are nothing if they’re not rebels, and they have been for a gazillion years,” she said.\u003c/p>\n\u003cp>At Sixty-First Street Elementary, planning for next year’s kindergarten immunization checks are well underway. At school drop-off in the morning, Macias sticks his head into parents’ cars and tells them he wants their younger children as kindergartners next year, but they need to be vaccinated. School staff photocopy flyers with the locations of health care clinics, translate forms into Spanish, and offer, time and again, to help parents get the job done.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>“The only thing we haven’t done is bring the doctor here,” Macias said.\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>Partly proud, partly mortified, Principal José Macias of the Sixty-First Street Elementary School in Los Angeles said that yes, it was true – his school had reported the biggest increase in the rate of fully vaccinated kindergarten students in the state. The number of kindergartners who met all vaccination requirements this year jumped by 82 percentage points at the school, according to data released this week.\u003c/p>\n\u003cp>“I’m glad,” Macias said, “but it also tells me we were low.”\u003c/p>\n\u003cp>Parents at Sixty-First Street Elementary support vaccinations for their children, Macias said, but follow-up is sketchy. That’s how the school ended up in 2015-16 with just 12 percent of its kindergartners up-to-date for all vaccinations. The remaining kindergartners – 88 percent of them – were admitted “conditionally” in 2015-16, meaning they had some but not all of the 10 immunizations required by the state, and promised to complete the rest. In 2016-17, the up-to-date vaccination rate for kindergartners at Sixty-First Street Elementary climbed to nearly 95 percent.\u003c/p>\n\u003cp>While Macias’ school reported the most dramatic upturn, new data from the California Department of Public Health show for the first time how individual schools contributed to a statewide increase in kindergarten vaccination rates to 95.6 percent.\u003c/p>\n\u003cp>\u003cem>Search this new \u003ca href=\"https://edsource.org/2017/vaccination-rates-by-school-in-california/580981\" target=\"_blank\">vaccination database\u003c/a>, created by EdSource, a nonprofit news site that focuses on education policy in the state, to see vaccination rates at individual schools.\u003cbr>\n\u003c/em>\u003cbr>\nThe new vaccination law, Senate Bill 277, took effect at the start of this school year, eliminating the ability of a parent to obtain a “personal belief exemption” to opt out of vaccinating their children attending public and private schools. But the removal of the personal belief exemption doesn’t account for the overall rise in vaccination rates, according to a summary report from the California Department of Public Health. Instead, schools and parents started to take immunization far more seriously, health officials say.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>International publicity about the Disneyland measles outbreak of 2014-15 brought the risk of contracting measles, which had been declared eradicated in the United States in 2000, back as a public health threat. As Senate Bill 277, authored by Sen. Richard Pan, D-Sacramento, wound its way through the Capitol, news reports highlighted testimony from parents who vowed never to vaccinate their children and testimony from parents who had seen the ravages of polio. A 6-year-old Marin County boy with leukemia, Rhett Krawitt, became the public face of the debate.\u003c/p>\n\u003cp>And state finance auditors announced they would be looking more closely at schools with high rates of kindergartners who were not fully immunized – who were “conditionally” enrolled – to evaluate whether these students were properly enrolled and legitimately eligible for state per-pupil funding, according to the California Department of Public Health summary report. Students who are not fully vaccinated run the risk of not being allowed to attend school.\u003c/p>\n\u003cp>When the law passed in 2015, staff at many schools launched a full court press to get every eligible incoming kindergartner vaccinated. Collecting immunization paperwork from parents rose to the top of the to-do list. Kimberly Wright, principal of Los Angeles’ Cienega Elementary School, said she made immunizations a permanent agenda item for her meetings with office staff. At the front counter, conversations with parents about vaccinations shifted in tone from a low-key reminder – “well, when you can do it,” Wright said, to “this is really important.” Staff made reminder calls to parents, and Wright kept a list of those with incomplete immunizations on her desk. Increases in vaccination rates at Cienega Elementary rose from 15 percent in 2015-16 to nearly 88 percent up-to-date in 2016-17.\u003c/p>\n\u003cp>“The vocabulary of the personal belief exemption seemed to imply it was a personal choice with only personal implications, when actually the effect on a community could be profound,” said Matt Willis, public health officer for Marin County.\u003c/p>\n\u003cp>Matt Willis, public health officer for Marin County, which had some of the highest rates of personal belief exemptions in the state, said that the debate about vaccinations shifted in Marin in part because of Rhett and his story. Chemotherapy had compromised Rhett’s immune system, making him unable to be vaccinated against certain diseases, and leaving him at risk for catching a disease from unvaccinated classmates. He stood on a wooden chair at a March 2015 meeting of the Marin County Board of Supervisors and urged supervisors to support Senate Bill 277 “so kids like me don’t get sick at school.”\u003c/p>\n\u003cp>“One key was reframing vaccinations entirely as a matter of community responsibility,” Willis said. “The vocabulary of the personal belief exemption seemed to imply it was a personal choice with only personal implications, when actually the effect on a community could be profound.”\u003c/p>\n\u003cp>In addition, Willis surveyed Marin parents in 2013 about their beliefs about vaccinations, and found that most were choosing to vaccinate their children against some but not all of the 10 diseases. “We weren’t necessarily dealing with a community that was frankly against vaccinations,” Willis said. “That offered hope.”\u003c/p>\n\u003cp>At Reed Elementary School, Rhett’s school, the percentage of kindergarten students who are up-to-date with vaccinations went from 92.5 percent in 2015-16 to 97 percent in 2016-17. “It was the education of the community,” said Nancy Lynch, superintendent of Reed Union School District in Marin County. “People stepped up.”\u003c/p>\n\u003cp>Vaccination rates remained low, unsurprisingly, at schools that offer independent study programs or oversee home-schooled students. Students in those programs are not required to be vaccinated, nor are students who receive special education services. Aside from those types of schools, Walnut Avenue Elementary School in Chino Valley Unified had one of the lowest rates of immunizations, with 33 percent of kindergarten students up-to-date on vaccinations in 2016-17. Sixty-seven percent were overdue for vaccinations, meaning they were late getting a scheduled vaccination. According to the California Department of Education, children overdue for one or more required immunizations are subject to exclusion from school until they meet the requirements. \u003c/p>\n\u003cp>Brenda Dunkle, a spokeswoman for Chino Valley Unified, said the district could not comment on vaccination rates because its director of health services is out of the office until early May.\u003c/p>\n\u003cp>In Orange County, Pamela Kahn, coordinator of health and wellness at the Orange County Department of Education, said that education about immunizations unfolded with every news cycle in 2015 as dozens of children and adults, most of whom were unvaccinated, contracted measles after visiting two Disney theme parks in Anaheim. \u003c/p>\n\u003cp>“No. 1 was the Disneyland measles outbreak,” she said. “This brought people’s attention to the fact that this does still happen.”\u003c/p>\n\u003cp>An exodus of students from schools to home schools to avoid vaccinations didn’t occur, Kahn said. “We knew there would be some,” she said, and there were.\u003c/p>\n\u003cp>Along with the statewide increase in the vaccination rate, the rate of medical exemptions also rose, from 0.2 percent to 0.5 percent. A medical exemption requires a letter from a doctor stating the health reasons why a child cannot be vaccinated against certain diseases; there is no official form.\u003c/p>\n\u003cp>“From a medical point of view, there are some letters that are kind of suspicious,” Kahn said. “For example, we get the same exemption letter, with the same language, for different kids, from the same doctor. It could be ‘a familial history of reactions to immunization.’ That could be a cousin, a third cousin. One person wrote that this child was exempt until a date that correlates to high school graduation. That’s odd.”\u003c/p>\n\u003cp>But the schools don’t question the exemption letters, she said. “We were advised that we are not the medical experts,” she said.\u003c/p>\n\u003cp>“I think people are still looking for avenues not to be vaccinated,” said Dr. Kenneth Cutler, public health officer for Nevada County, which also has had pockets of unvaccinated students. Kindergarten vaccination rates for the county reached 81 percent, up from 69 percent about five years ago, he said.\u003c/p>\n\u003cp>Some schools in the county reported high levels of medical exemptions and high levels of personal belief exemptions, which were carried over from last year when the students were in transitional kindergarten. The law states that those exemptions remained valid for kindergarten this year.\u003c/p>\n\u003cp>But Sharyn Turner, school health services coordinator at the office of the Nevada County Superintendent of Schools, said she did see signs of change in what has been a strong anti-vaccination culture at some schools. In those schools, she said, parents who opposed vaccinations shunned some pro-vaccination parents. But Turner’s vaccinated grandson now attends School of the Arts, which has a history of being popular with vaccine opponents, and she said the family has been welcomed. “You are no longer excluded because you vaccinate your child,” she said.\u003c/p>\n\u003cp>Others remain outliers in the vaccination landscape.\u003c/p>\n\u003cp>At the Mountain Oaks School in Calaveras County, where all students are in independent study or home-school programs, supplemented by on-site classes for those who are vaccinated, 39 percent of kindergartners were up-to-date on vaccinations. Fifty-seven percent did not have to be immunized because they are not receiving classroom instruction or they are receiving special education services. An additional 4.5 percent had a medical exemption.\u003c/p>\n\u003cp>Vaccinated students can attend group classes at school, including pottery and algebra, said Anne Colman, administrator of Mountain Oaks School.\u003c/p>\n\u003cp>“Despite that, the percentage of parents who don’t care that their kids can’t take classes at school is really high,” Colman said.\u003c/p>\n\u003cp>Unvaccinated students had to stay home from a recent outdoor adventure school trip, she said. “We’re trying very hard to err on the side of caution,” she said. “I do not want to be the administrator on the 11 o’clock news – ‘Plague outbreak after unvaccinated kids are let in.'”\u003c/p>\n\u003cp>“Our parents are nothing if they’re not rebels, and they have been for a gazillion years,” she said.\u003c/p>\n\u003cp>At Sixty-First Street Elementary, planning for next year’s kindergarten immunization checks are well underway. At school drop-off in the morning, Macias sticks his head into parents’ cars and tells them he wants their younger children as kindergartners next year, but they need to be vaccinated. School staff photocopy flyers with the locations of health care clinics, translate forms into Spanish, and offer, time and again, to help parents get the job done.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“The only thing we haven’t done is bring the doctor here,” Macias said.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "California Proposes Strict Limit on Toxic Chemical in Drinking Water",
"title": "California Proposes Strict Limit on Toxic Chemical in Drinking Water",
"headTitle": "State of Health | KQED News",
"content": "\u003cp>California regulators are proposing a strict limit on a toxic man-made chemical that has contaminated water supplies throughout the state, particularly in its vast agricultural heartland.\u003c/p>\n\u003cp>California would be the second state, after Hawaii, to establish a threshold for the former pesticide ingredient and industrial solvent known as TCP (1,2,3-trichloropropane) in drinking water. The chemical compound, identified in California as a human carcinogen, is no longer in wide use but has leached over the years into many wells and reservoirs in California and other states.\u003c/p>\n\u003cp>The California State Water Resources Control Board’s proposal would set the maximum allowable amount of TCP in public tap water at five parts per trillion — the lowest level that existing filtration systems can reliably detect and far lower than Hawaii’s.\u003c/p>\n\u003cp>It “is a top priority for the state water board,” said board spokesman Andrew DiLuccia.\u003c/p>\n\u003cp>TCP taints water systems serving nearly a million people from Sacramento to San Diego, according to the state water board. The compound is present at levels above the proposed limit in 562 wells, reservoirs and other sources belonging to 94 public water systems, according to 2016 data. Those numbers do not include private wells.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Citing federal data, the Environmental Working Group, a Washington, D.C.-based advocacy organization, says the chemical also has been detected in water supplies of a dozen other states, including New York, Pennsylvania and New Jersey, as well as Puerto Rico. The group, or EWG, said the extent of contamination is likely underestimated because federal tests used a contamination threshold much higher than California’s. (The federal government does not set restrictions on TCP in drinking water.)\u003c/p>\n\u003cp>Once TCP gets into the groundwater, it “persists for centuries,” according to the EWG’s April report.\u003c/p>\n\u003cp>In California, the contamination exists in many urban areas, including in Los Angeles, San Bernardino and San Mateo counties. Though the source in those more populated regions is not known, the pollution is believed to come from industrial and hazardous waste sites.\u003c/p>\n\u003cp>“Los Angeles has quite a bit of contamination,” said Andria Ventura, toxics program manager for the environmental advocacy group Clean Water Action. “It’s hard for water providers to pinpoint where it came from.”\u003c/p>\n\u003cp>But California’s most serious and widespread TCP contamination is in the agricultural counties of the Central Valley, where the chemical was an ingredient in soil fumigants sold by the Shell Oil and Dow Chemical companies from at least the 1950s into the 1980s.\u003c/p>\n\u003cp>During that period, farmers who grew potatoes, sugar beets and other vegetables used the fumigants to kill tiny, soil-dwelling worms called nematodes. Dozens of municipalities and public water suppliers across the state have filed lawsuits against Shell and Dow, alleging that the companies knew — or should have known — that the TCP in their soil-fumigating pesticides would migrate into groundwater and pose a serious health hazard.\u003c/p>\n\u003cp>Shell and Dow have denied wrongdoing. Shell quit selling its product, known as D-D, in the mid-1980s. About the same time, Dow opted to reformulate its fumigant, known as Telone, after which TCP declined to “generally undetectable” levels, according to company spokesman Jarrod Erpelding. He declined to comment further, citing pending litigation.\u003c/p>\n\u003cp>Shell sent an email response: “The former Shell agricultural product, last manufactured more than 30 years ago, contained trace amounts of 1,2,3 trichloropropane (TCP). It was used to control microscopic worms that attacked crops causing millions of dollars a year of crop loss for farmers, and was approved for use by the U.S. government and the State of California.”\u003c/p>\n\u003cp>Environmental advocates say the adoption of a regulatory limit for TCP is a crucial step to help cash-strapped, rural water districts pay for the cleanup of their drinking water.\u003c/p>\n\u003cp>“It allows the districts when they go into court to be very specific and say to the judge, ‘We’re going to need exactly this amount of money to purchase this kind of system to meet the state standards,’” said Bill Walker, managing editor at the Environmental Working Group and co-author of its report on the role of Shell and Dow in California’s TCP drinking water problem.\u003c/p>\n\u003cp>“It doesn’t guarantee they’ll win,” he said, “but it increases their leverage.”\u003c/p>\n\u003cp>At a public hearing on April 19, water board members heard testimony and received written comments on the proposed limit. Now the board is reviewing the input it received and will likely vote on the plan by summer, DiLuccia said.\u003c/p>\n\u003cp>The regulation would require water utilities to test their supplies for TCP and remove it from any public drinking water source that exceeded the threshold, starting in 2018.\u003c/p>\n\u003cp>The proposed limit is more stringent than Hawaii’s because it is as close as California could get to meeting its stated “public health goal” for TCP set in 2009, officials say.\u003c/p>\n\u003cp>Though it is difficult to know how long the California cleanup might take, the cost of TCP testing and subsequent cleanup could reach nearly $500 million over 20 years, according to one water board estimate.\u003c/p>\n\u003cp>TCP contamination “disproportionately impacts poor communities and communities of color,” said Jenny Rempel, of Community Water Center, a Visalia, Calif.-based advocacy group. “This is a problem where the cost should not be borne by taxpayers.”\u003c/p>\n\u003cp>Todd E. Robins, a San Francisco attorney who is representing more than two dozen of the water suppliers that are suing Shell and Dow, argues that the companies included TCP in their worm-killing pesticides to get rid of the compound without having to pay for proper disposal. It was a byproduct of unrelated manufacturing processes and, according to the suits, played no role in killing the plant-damaging worms.\u003c/p>\n\u003cp>“The TCP that we find today in groundwater is the result of past use of soil fumigants that contained TCP as an unnecessary ingredient,” Robins said. “Instead of paying for disposal costs, they started getting farmers to pay for them.”\u003c/p>\n\u003cp>“The saddest part of the story,” Robins added, “is that the … actual active ingredient breaks down in the soil after a matter of days and has rarely been detected in anyone’s groundwater.”\u003c/p>\n\u003cp>One of the lawsuits filed by Robins, on behalf of the Del Rey Community Service District in Fresno County, says the companies knew they could remove or reduce the amount of TCP in their pesticides without compromising its effectiveness but failed to do so.\u003c/p>\n\u003cp>The complaint calls TCP a “hazardous waste” — a byproduct created in the manufacturing of a different chemical, allyl chloride, that Shell and Dow used to make plastics and other commercial products.\u003c/p>\n\u003cp>An internal Shell memo uncovered in Robins’ litigation cites $3.2 million in savings from “cost avoidance for disposal” related to the allyl chloride operations. The memo is dated Jan. 20, 1983 — a year before the company stopped producing the TCP-laced pesticide.\u003c/p>\n\u003cp>In addition to the pending cases, which also name distributors and marketers as defendants, Robins said he has settled eight cases against both Shell and Dow since 2010. He said he cannot disclose the amounts because of confidentiality agreements.\u003c/p>\n\u003cp>Last December, in a case tried by a different lawyer, a Fresno Superior Court jury awarded the city of Clovis $22 million against Shell to clean up its TCP-tainted drinking water.\u003c/p>\n\u003cp>In 2010, in a case brought by the city of Redlands, Shell won. The company argued that a nearby aerospace plant was the source of the toxin. Moreover, the wells in question were used for irrigation, and the jury didn’t believe they’d ever be used for drinking water.\u003c/p>\n\u003cp>As the lawsuits proceed, some California residents do what they can to protest the toxic chemicals in their water supply. Bartolo Chavez, 57, took time off his job in a juice packing house to testify at the recent hearing in Sacramento.\u003c/p>\n\u003cp>“We talk about the contaminants and the danger,” said Chavez, who has lived for 21 years in the Central Valley town of Arvin, Calif. “And [that] we’re exposed.”\u003c/p>\n\u003cp>He said he gets tokens from the water district to get free filtered water — not just because of TCP but because of other contaminants as well, such as arsenic and chromium-6.\u003c/p>\n\u003cp>“But the tokens aren’t enough,” Chavez said, speaking through a Spanish-language interpreter. “So in addition, we buy bottled water at Costco.”\u003c/p>\n\u003cp>Chavez and his wife, a hotel worker, pay about $50 a month for that water — a price they say they can ill afford. But leaving Arvin isn’t an option either, Chavez said.\u003c/p>\n\u003cp>“I have thought about moving, but it’s not so easy to find work in other places, especially when you’re older,” he said. “Our house is almost paid off, and to move would be to start over again, so it’s almost impossible.”\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>California Healthline Managing Editor Bernard Wolfson contributed to this report.\u003cbr>\n\u003c/em>\u003c/p>\n\n",
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"nprByline": "\u003cstrong>\u003ca href=\"http://californiahealthline.org/news/author/stephanie-oneill/\"_blank\">Stephanie O'Neill \u003c/strong>\u003c/a>\u003c/br>California Healthline",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>California regulators are proposing a strict limit on a toxic man-made chemical that has contaminated water supplies throughout the state, particularly in its vast agricultural heartland.\u003c/p>\n\u003cp>California would be the second state, after Hawaii, to establish a threshold for the former pesticide ingredient and industrial solvent known as TCP (1,2,3-trichloropropane) in drinking water. The chemical compound, identified in California as a human carcinogen, is no longer in wide use but has leached over the years into many wells and reservoirs in California and other states.\u003c/p>\n\u003cp>The California State Water Resources Control Board’s proposal would set the maximum allowable amount of TCP in public tap water at five parts per trillion — the lowest level that existing filtration systems can reliably detect and far lower than Hawaii’s.\u003c/p>\n\u003cp>It “is a top priority for the state water board,” said board spokesman Andrew DiLuccia.\u003c/p>\n\u003cp>TCP taints water systems serving nearly a million people from Sacramento to San Diego, according to the state water board. The compound is present at levels above the proposed limit in 562 wells, reservoirs and other sources belonging to 94 public water systems, according to 2016 data. Those numbers do not include private wells.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Citing federal data, the Environmental Working Group, a Washington, D.C.-based advocacy organization, says the chemical also has been detected in water supplies of a dozen other states, including New York, Pennsylvania and New Jersey, as well as Puerto Rico. The group, or EWG, said the extent of contamination is likely underestimated because federal tests used a contamination threshold much higher than California’s. (The federal government does not set restrictions on TCP in drinking water.)\u003c/p>\n\u003cp>Once TCP gets into the groundwater, it “persists for centuries,” according to the EWG’s April report.\u003c/p>\n\u003cp>In California, the contamination exists in many urban areas, including in Los Angeles, San Bernardino and San Mateo counties. Though the source in those more populated regions is not known, the pollution is believed to come from industrial and hazardous waste sites.\u003c/p>\n\u003cp>“Los Angeles has quite a bit of contamination,” said Andria Ventura, toxics program manager for the environmental advocacy group Clean Water Action. “It’s hard for water providers to pinpoint where it came from.”\u003c/p>\n\u003cp>But California’s most serious and widespread TCP contamination is in the agricultural counties of the Central Valley, where the chemical was an ingredient in soil fumigants sold by the Shell Oil and Dow Chemical companies from at least the 1950s into the 1980s.\u003c/p>\n\u003cp>During that period, farmers who grew potatoes, sugar beets and other vegetables used the fumigants to kill tiny, soil-dwelling worms called nematodes. Dozens of municipalities and public water suppliers across the state have filed lawsuits against Shell and Dow, alleging that the companies knew — or should have known — that the TCP in their soil-fumigating pesticides would migrate into groundwater and pose a serious health hazard.\u003c/p>\n\u003cp>Shell and Dow have denied wrongdoing. Shell quit selling its product, known as D-D, in the mid-1980s. About the same time, Dow opted to reformulate its fumigant, known as Telone, after which TCP declined to “generally undetectable” levels, according to company spokesman Jarrod Erpelding. He declined to comment further, citing pending litigation.\u003c/p>\n\u003cp>Shell sent an email response: “The former Shell agricultural product, last manufactured more than 30 years ago, contained trace amounts of 1,2,3 trichloropropane (TCP). It was used to control microscopic worms that attacked crops causing millions of dollars a year of crop loss for farmers, and was approved for use by the U.S. government and the State of California.”\u003c/p>\n\u003cp>Environmental advocates say the adoption of a regulatory limit for TCP is a crucial step to help cash-strapped, rural water districts pay for the cleanup of their drinking water.\u003c/p>\n\u003cp>“It allows the districts when they go into court to be very specific and say to the judge, ‘We’re going to need exactly this amount of money to purchase this kind of system to meet the state standards,’” said Bill Walker, managing editor at the Environmental Working Group and co-author of its report on the role of Shell and Dow in California’s TCP drinking water problem.\u003c/p>\n\u003cp>“It doesn’t guarantee they’ll win,” he said, “but it increases their leverage.”\u003c/p>\n\u003cp>At a public hearing on April 19, water board members heard testimony and received written comments on the proposed limit. Now the board is reviewing the input it received and will likely vote on the plan by summer, DiLuccia said.\u003c/p>\n\u003cp>The regulation would require water utilities to test their supplies for TCP and remove it from any public drinking water source that exceeded the threshold, starting in 2018.\u003c/p>\n\u003cp>The proposed limit is more stringent than Hawaii’s because it is as close as California could get to meeting its stated “public health goal” for TCP set in 2009, officials say.\u003c/p>\n\u003cp>Though it is difficult to know how long the California cleanup might take, the cost of TCP testing and subsequent cleanup could reach nearly $500 million over 20 years, according to one water board estimate.\u003c/p>\n\u003cp>TCP contamination “disproportionately impacts poor communities and communities of color,” said Jenny Rempel, of Community Water Center, a Visalia, Calif.-based advocacy group. “This is a problem where the cost should not be borne by taxpayers.”\u003c/p>\n\u003cp>Todd E. Robins, a San Francisco attorney who is representing more than two dozen of the water suppliers that are suing Shell and Dow, argues that the companies included TCP in their worm-killing pesticides to get rid of the compound without having to pay for proper disposal. It was a byproduct of unrelated manufacturing processes and, according to the suits, played no role in killing the plant-damaging worms.\u003c/p>\n\u003cp>“The TCP that we find today in groundwater is the result of past use of soil fumigants that contained TCP as an unnecessary ingredient,” Robins said. “Instead of paying for disposal costs, they started getting farmers to pay for them.”\u003c/p>\n\u003cp>“The saddest part of the story,” Robins added, “is that the … actual active ingredient breaks down in the soil after a matter of days and has rarely been detected in anyone’s groundwater.”\u003c/p>\n\u003cp>One of the lawsuits filed by Robins, on behalf of the Del Rey Community Service District in Fresno County, says the companies knew they could remove or reduce the amount of TCP in their pesticides without compromising its effectiveness but failed to do so.\u003c/p>\n\u003cp>The complaint calls TCP a “hazardous waste” — a byproduct created in the manufacturing of a different chemical, allyl chloride, that Shell and Dow used to make plastics and other commercial products.\u003c/p>\n\u003cp>An internal Shell memo uncovered in Robins’ litigation cites $3.2 million in savings from “cost avoidance for disposal” related to the allyl chloride operations. The memo is dated Jan. 20, 1983 — a year before the company stopped producing the TCP-laced pesticide.\u003c/p>\n\u003cp>In addition to the pending cases, which also name distributors and marketers as defendants, Robins said he has settled eight cases against both Shell and Dow since 2010. He said he cannot disclose the amounts because of confidentiality agreements.\u003c/p>\n\u003cp>Last December, in a case tried by a different lawyer, a Fresno Superior Court jury awarded the city of Clovis $22 million against Shell to clean up its TCP-tainted drinking water.\u003c/p>\n\u003cp>In 2010, in a case brought by the city of Redlands, Shell won. The company argued that a nearby aerospace plant was the source of the toxin. Moreover, the wells in question were used for irrigation, and the jury didn’t believe they’d ever be used for drinking water.\u003c/p>\n\u003cp>As the lawsuits proceed, some California residents do what they can to protest the toxic chemicals in their water supply. Bartolo Chavez, 57, took time off his job in a juice packing house to testify at the recent hearing in Sacramento.\u003c/p>\n\u003cp>“We talk about the contaminants and the danger,” said Chavez, who has lived for 21 years in the Central Valley town of Arvin, Calif. “And [that] we’re exposed.”\u003c/p>\n\u003cp>He said he gets tokens from the water district to get free filtered water — not just because of TCP but because of other contaminants as well, such as arsenic and chromium-6.\u003c/p>\n\u003cp>“But the tokens aren’t enough,” Chavez said, speaking through a Spanish-language interpreter. “So in addition, we buy bottled water at Costco.”\u003c/p>\n\u003cp>Chavez and his wife, a hotel worker, pay about $50 a month for that water — a price they say they can ill afford. But leaving Arvin isn’t an option either, Chavez said.\u003c/p>\n\u003cp>“I have thought about moving, but it’s not so easy to find work in other places, especially when you’re older,” he said. “Our house is almost paid off, and to move would be to start over again, so it’s almost impossible.”\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>California Healthline Managing Editor Bernard Wolfson contributed to this report.\u003cbr>\n\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Covered California Rates Could Skyrocket Without Obamacare Subsidies",
"title": "Covered California Rates Could Skyrocket Without Obamacare Subsidies",
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"content": "\u003cp>With a deadline looming, California’s health exchange and a major insurer pressed Republican leaders in Washington to clear up confusion over their commitment to key provisions of the Affordable Care Act.\u003c/p>\n\u003cp>Health insurers participating in the Covered California exchange for individuals and families must submit initial rates for 2018 on Monday. Peter Lee, the exchange’s executive director, warned in a conference call Thursday that rates could jump by more than 40 percent if the Trump administration and Republican-led Congress walk away from crucial elements of the health law.\u003c/p>\n\u003cp>In the meantime, House Republicans are looking to revive their Obamacare replacement bill and rally more support among moderate lawmakers in hopes of holding a vote soon.\u003c/p>\n\u003cp>In addition to Covered California, the chief executive of Molina Healthcare, a Long Beach-based insurer, implored Congress and the Trump administration on Thursday to act quickly to stabilize the exchange markets.\u003c/p>\n\u003cp>At issue are the continued federal funding of subsidies that reduce low-income consumers’ deductibles and copays and the enforcement of the individual mandate to purchase health coverage or pay a penalty.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Premiums in Covered California plans could increase by 42 percent, on average, if those subsidies aren’t funded and the mandate isn’t enforced, according to an analysis released Thursday by the exchange. Covered California has about 1.3 million customers.\u003c/p>\n\u003cp>Lee said it is imperative for leaders in Washington to clear up the uncertainty to avoid damaging insurance markets nationwide and hurting consumers. He said statements this week by the Trump administration that it would continue funding the cost-sharing subsidies haven’t specifically addressed whether that applies to all of 2017 or 2018.\u003c/p>\n\u003cp>“Health plans need to know now what are the rules of the road,” Lee said. “Insurers are considering their participation in the face of unprecedented uncertainty.”\u003c/p>\n\u003cp>Much of the debate this week in Washington has centered on House Republicans amending their Obamacare replacement bill, the American Health Care Act. But Lee said addressing the current market rules should be a priority ahead of crafting broader legislation.\u003c/p>\n\u003cp>Lee declined to comment on the latest legislative proposal from House Republicans, but he noted it still faces a long road ahead in Congress before it would win approval. “Health plans need to submit bids for today’s reality. Policymakers need to address that reality,” Lee said.\u003c/p>\n\u003cp>In a letter to House Speaker Paul Ryan and other congressional leaders, Molina Healthcare CEO J. Mario Molina said the cost-sharing reduction subsidies are essential for making coverage affordable for many consumers. Those subsidies cover out-of-pocket costs for exchange customers with incomes below 250 percent of the federal poverty level. They are separate from the tax credits that subsidize premium costs.\u003c/p>\n\u003cp>Without that federal funding, Molina wrote, “we will have no choice but to send a notice of default informing the government that we are dropping our contracts for their failure to pay premiums and seek to withdraw from the marketplace immediately.”\u003c/p>\n\u003cp>Molina said his company currently serves more than 1 million people through insurance exchanges in California and several other states. Molina had nearly 69,000 enrollees in Covered California as of December, state data show.\u003c/p>\n\u003cp>Anthem, California’s largest for-profit health insurer and a key player on exchanges nationally, issued a similar warning this week. During an earnings conference call on Wednesday, Anthem CEO Joseph Swedish said the insurer may exit some state exchanges or resubmit for higher rates if the fate of the cost-sharing subsidies isn’t resolved by early June.\u003c/p>\n\u003cp>Anthem has more than 310,000 customers in the California exchange, or nearly 25 percent of the market. Rival Blue Shield of California is the leader in state enrollment with 389,480, or 31 percent market share.\u003c/p>\n\u003cp>Republican leaders in Congress say they will address these concerns and move quickly to aid consumers by replacing the ACA with a plan that will reduce premiums and expand options for coverage.\u003c/p>\n\u003cp>The health law “is collapsing,” Ryan said at a news conference Thursday. “The American health care system in the individual market is in peril right now. We have a moral obligation to prevent people from getting hurt, to stop the damage from being continued.”\u003c/p>\n\u003cp>Many conservative Republicans oppose the Trump administration’s decision to continue to pay the cost-sharing subsidies, calling the subsidies unconstitutional because they lack congressional approval. House Republicans successfully sued to block the payments, but a judge put the ruling on hold while the Obama administration appealed the case. It’s not yet clear how President Donald Trump will handle that appeal.\u003c/p>\n\u003cp>Amid this political uncertainty, California Insurance Commissioner Dave Jones told insurers this week they could submit two sets of rate filings on Monday for their exchange business. One filing would reflect continued funding of cost-sharing subsidies and enforcement of the individual mandate. A separate filing could assume the opposite.\u003c/p>\n\u003cp>“In light of all the actions taken by the Trump administration and House leadership to undermine the ACA, I expect that health insurers will consider filing significant rate increases for 2018,” Jones wrote in a bulletin to insurers this week.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>For 2017, rates in Covered California rose by 13.2 percent, on average, statewide. The state exchange is one of the few that actively negotiates rates with insurers. Premiums for the next year usually are announced in July.\u003c/p>\n\n",
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"nprByline": "\u003cstrong>\u003ca href=\"http://californiahealthline.org/news/author/Chad-Terhune/\">Chad Terhune\u003c/strong>\u003c/a>\u003c/br>California HealthLine",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>With a deadline looming, California’s health exchange and a major insurer pressed Republican leaders in Washington to clear up confusion over their commitment to key provisions of the Affordable Care Act.\u003c/p>\n\u003cp>Health insurers participating in the Covered California exchange for individuals and families must submit initial rates for 2018 on Monday. Peter Lee, the exchange’s executive director, warned in a conference call Thursday that rates could jump by more than 40 percent if the Trump administration and Republican-led Congress walk away from crucial elements of the health law.\u003c/p>\n\u003cp>In the meantime, House Republicans are looking to revive their Obamacare replacement bill and rally more support among moderate lawmakers in hopes of holding a vote soon.\u003c/p>\n\u003cp>In addition to Covered California, the chief executive of Molina Healthcare, a Long Beach-based insurer, implored Congress and the Trump administration on Thursday to act quickly to stabilize the exchange markets.\u003c/p>\n\u003cp>At issue are the continued federal funding of subsidies that reduce low-income consumers’ deductibles and copays and the enforcement of the individual mandate to purchase health coverage or pay a penalty.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Premiums in Covered California plans could increase by 42 percent, on average, if those subsidies aren’t funded and the mandate isn’t enforced, according to an analysis released Thursday by the exchange. Covered California has about 1.3 million customers.\u003c/p>\n\u003cp>Lee said it is imperative for leaders in Washington to clear up the uncertainty to avoid damaging insurance markets nationwide and hurting consumers. He said statements this week by the Trump administration that it would continue funding the cost-sharing subsidies haven’t specifically addressed whether that applies to all of 2017 or 2018.\u003c/p>\n\u003cp>“Health plans need to know now what are the rules of the road,” Lee said. “Insurers are considering their participation in the face of unprecedented uncertainty.”\u003c/p>\n\u003cp>Much of the debate this week in Washington has centered on House Republicans amending their Obamacare replacement bill, the American Health Care Act. But Lee said addressing the current market rules should be a priority ahead of crafting broader legislation.\u003c/p>\n\u003cp>Lee declined to comment on the latest legislative proposal from House Republicans, but he noted it still faces a long road ahead in Congress before it would win approval. “Health plans need to submit bids for today’s reality. Policymakers need to address that reality,” Lee said.\u003c/p>\n\u003cp>In a letter to House Speaker Paul Ryan and other congressional leaders, Molina Healthcare CEO J. Mario Molina said the cost-sharing reduction subsidies are essential for making coverage affordable for many consumers. Those subsidies cover out-of-pocket costs for exchange customers with incomes below 250 percent of the federal poverty level. They are separate from the tax credits that subsidize premium costs.\u003c/p>\n\u003cp>Without that federal funding, Molina wrote, “we will have no choice but to send a notice of default informing the government that we are dropping our contracts for their failure to pay premiums and seek to withdraw from the marketplace immediately.”\u003c/p>\n\u003cp>Molina said his company currently serves more than 1 million people through insurance exchanges in California and several other states. Molina had nearly 69,000 enrollees in Covered California as of December, state data show.\u003c/p>\n\u003cp>Anthem, California’s largest for-profit health insurer and a key player on exchanges nationally, issued a similar warning this week. During an earnings conference call on Wednesday, Anthem CEO Joseph Swedish said the insurer may exit some state exchanges or resubmit for higher rates if the fate of the cost-sharing subsidies isn’t resolved by early June.\u003c/p>\n\u003cp>Anthem has more than 310,000 customers in the California exchange, or nearly 25 percent of the market. Rival Blue Shield of California is the leader in state enrollment with 389,480, or 31 percent market share.\u003c/p>\n\u003cp>Republican leaders in Congress say they will address these concerns and move quickly to aid consumers by replacing the ACA with a plan that will reduce premiums and expand options for coverage.\u003c/p>\n\u003cp>The health law “is collapsing,” Ryan said at a news conference Thursday. “The American health care system in the individual market is in peril right now. We have a moral obligation to prevent people from getting hurt, to stop the damage from being continued.”\u003c/p>\n\u003cp>Many conservative Republicans oppose the Trump administration’s decision to continue to pay the cost-sharing subsidies, calling the subsidies unconstitutional because they lack congressional approval. House Republicans successfully sued to block the payments, but a judge put the ruling on hold while the Obama administration appealed the case. It’s not yet clear how President Donald Trump will handle that appeal.\u003c/p>\n\u003cp>Amid this political uncertainty, California Insurance Commissioner Dave Jones told insurers this week they could submit two sets of rate filings on Monday for their exchange business. One filing would reflect continued funding of cost-sharing subsidies and enforcement of the individual mandate. A separate filing could assume the opposite.\u003c/p>\n\u003cp>“In light of all the actions taken by the Trump administration and House leadership to undermine the ACA, I expect that health insurers will consider filing significant rate increases for 2018,” Jones wrote in a bulletin to insurers this week.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>For 2017, rates in Covered California rose by 13.2 percent, on average, statewide. The state exchange is one of the few that actively negotiates rates with insurers. Premiums for the next year usually are announced in July.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"content": "\u003cp>WHITTIER, Calif. -- Lynn Whittaker stood in the hallway of her home looking at the framed photos on the wall. In one, her son Andrew is playing high school water polo. In another, he’s holding a trombone.\u003cbr>\nThe images show no hint of his life today: the seizures that leave him temporarily paralyzed, the weakness that makes him fall over, his labored speech, his scrambled thoughts.\u003c/p>\n\u003cp>Andrew, 28, can no longer feed himself or walk on his own. The past nine years have been a blur of doctor appointments, hospital visits and medical tests that have failed to produce answers.\u003c/p>\n\u003cp>“You name it, he doesn’t have it,” his mother said. \u003c/p>\n\u003cp>Andrew has never had a clear diagnosis. He and his family are in a torturous state of suspense, hanging their hopes on every new exam and evaluation. \u003c/p>\n\u003cp>Recently, they have sought help from the Undiagnosed Diseases Network, a federally funded coalition of universities, clinicians, hospitals and researchers dedicated to solving the nation’s toughest medical mysteries. The doctors and scientists in the network harness advances in genetic science to identify rare, sometimes unknown, illnesses.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>[soundcloud url=\"https://api.soundcloud.com/tracks/319736138\" params=\"color=ff5500&auto_play=false&hide_related=false&show_comments=true&show_user=true&show_reposts=false\" width=\"100%\" height=\"166\" iframe=\"true\" /]\u003c/p>\n\u003cp>At UCLA, one of the network’s sites, Andrew’s medical team would map his genetic makeup, then bring him in for a week of exams and consultations with specialists.\u003c/p>\n\u003cp>\u003cstrong>Writing A New Disease Encyclopedia\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>The Undiagnosed Diseases Network was founded in 2015 with a $43 million grant from the National Institutes of Health (NIH). Building on work already being done at NIH, the initiative expanded to include universities across the country: Duke, Columbia and Stanford are among the other sites. The goals are to provide answers for patients with mysterious diseases and to learn more about the disorders.\u003cbr>\nA proposal last month by President Donald Trump to cut the NIH budget by $5.8 billion could put the program in jeopardy.\u003c/p>\n\u003cp>Even with the best technology and the finest brains at work, progress is slow. Since its launch, the network has received nearly 1,400 applications on behalf of patients. It has accepted 545 for review so far. Just 74 of the cases have been diagnosed, including 11 at UCLA. Andrew Whittaker’s case is among many in progress.\u003c/p>\n\u003cp>It’s like battling “an unknown enemy,” said Euan Ashley, one of the principal investigators of the network’s Stanford University site. “That is a particular form of torment that other patients don’t have.” \u003c/p>\n\u003cp>A diagnosis can end families’ painful odyssey while helping physicians and scientists better understand rare diseases and human physiology, said Rachel Ramoni, former executive director of the network, which is based at Harvard University. \u003c/p>\n\u003cp>Researchers throughout the network use advanced medical technology. For example, to study patients’ gene expression and disease progression, they can make models using nearly transparent zebrafish, whose genetic structure is similar to that of humans. And scientists can conduct whole genome sequencing, which allows the medical team to read a patient’s DNA and identify changes that can reveal what may be causing a disease.\u003c/p>\n\u003cp>“We have powerful techniques to look at every gene that is being expressed as well as every gene that is inherited,” said Stanley Nelson, one of UCLA’s principal investigators and the lead doctor on Andrew’s case. “This is an example of true precision medicine.” \u003c/p>\n\u003cp>Nelson said the network can examine all known genes -- not just the ones believed to have mutations that cause diseases. Doing that can lead to the discovery of new illnesses.\u003c/p>\n\u003cp>“Part of what we have to do is keep building that library, that encyclopedia of what gene and what gene mutations cause what symptoms,” Nelson said. “It’s just incomplete at this moment.” \u003c/p>\n\u003cp>Already the work is helping patients and their families come to terms with their illnesses. In one case, at Stanford, a toddler was diagnosed with two rare diseases, including a connective tissue disorder called Marfan Syndrome, after doctors conducted a form of sequencing that looks for changes in coded genetic segments known as exons. \u003c/p>\n\u003cp>Sometimes answers come from something decidedly lower-tech: collaboration among clinicians and researchers who share experiences, data and expertise.\u003c/p>\n\u003cp>“A lot of times your ability to be diagnosed depends on who is in the room,” Ramoni said. “And what we are doing with the network is we are expanding exponentially the number of people in the room.”\u003cbr>\nDoctors at one institution might think their patient is a unique case, only to learn that colleagues elsewhere have a patient with a similar illness. But even when diseases are diagnosed or gene mutations are discovered, treatments may still not be available. \u003c/p>\n\u003cp>\u003cstrong>A Life-Changing Mystery\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>Andrew Whittaker’s odyssey began one afternoon at age 19, when he started trembling and couldn’t speak. Doctors suspected he was suffering from anxiety and prescribed medication to control it. But Andrew said he continued to have “episodes,” during which everything just went blank.\u003c/p>\n\u003cp>“It’s like there’s not enough blood going to your brain,” he said. “You can’t think.” \u003c/p>\n\u003cp>Andrew also started losing his balance and falling off his bicycle. The family visited several hospitals. Doctors discovered that the receptors in his brain were malfunctioning and that he lacked sufficient dopamine, a chemical compound in the body responsible for transmitting signals between nerve cells. As a result, Andrew has some symptoms similar to those of Parkinson’s disease. Doctors also confirmed he was having seizures. \u003c/p>\n\u003cp>Still, Andrew’s symptoms didn’t add up to any known disease.\u003c/p>\n\u003cp>One afternoon last fall at precisely noon, as Andrew sat propped up on the living room couch, Lynn’s phone alarm sounded, signaling it was time for his medication. Lynn pried open Andrew’s hand, which was clenched into a fist, and dropped in the pills. \u003c/p>\n\u003cp>To keep Andrew from falling, the family has lowered his bed and removed carpet from the house. They also bought him a wheelchair. Their precautions don’t always work. One morning, Lynn was in the kitchen when she heard a crash. “I ran in there and he’s laid flat on his back,” she said. \u003c/p>\n\u003cp>Andrew is close to his mom. But he also gets frustrated. He can’t shower or dress without her help. He’s had to give up the things he loved to do: printing T-shirts. Skateboarding. Shooting short films. He’s lost friends and can’t imagine dating anymore.\u003c/p>\n\u003cp>“Girlfriends? Forget about it,” he said, his face twitching as he talks. “They want a guy who can do stuff for them, not the other way around.” \u003c/p>\n\u003cp>\u003cstrong>Running The Medical Gauntlet\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>On a Monday morning in late January, Andrew and his parents were in an exam room at UCLA. Lynn teased her son, saying she was going to put him in a freezer until doctors figured out what was wrong.\u003cbr>\n“Then we’ll pull you back out again,” she said, smiling.\u003c/p>\n\u003cp>“I’ll never get pulled out,” Andrew responded. \u003c/p>\n\u003cp>“Yes, you will,” she said. “You will.”\u003c/p>\n\u003cp>Nelson, Andrew’s main doctor, walked into the room. He told Andrew he’d read through the medical records. “We’re going to try to figure you out.” \u003c/p>\n\u003cp>The work Nelson does is personal. His teenage son, Dylan, has Duchenne muscular dystrophy, a genetic disorder that causes muscle degeneration and weakness. Nelson knows his son’s disease will eventually take his life, but he said having a diagnosis makes all the difference. \u003c/p>\n\u003cp>“My heart very much goes out to the families that don’t even get an adequate diagnosis,” he said.\u003cbr>\nNelson suspects that Andrew’s disease is genetic as well. \u003c/p>\n\u003cp>He asked the Whittakers to describe their son’s journey and he conducted a short physical exam, asking Andrew to push against his hand and touch his own nose. Andrew trembled and his shoulders tensed, but he did it.\u003c/p>\n\u003cp>The rest of the week, Andrew underwent several other diagnostic tests, including a muscle biopsy, an EEG, MRI and a lumbar puncture. He remained upbeat, though running the medical gauntlet clearly wore him out. He also met with UCLA specialists in brain degeneration and muscle and nerve disorders. \u003c/p>\n\u003cp>At week’s end, Nelson sat down with the family to explain what he’d found. He had reviewed Andrew’s genome and compared it with that of both parents. Andrew had one copy of a defective gene that leads to Parkinson’s but the genome sequencing didn’t show a second copy, without which it could not be Parkinson’s.\u003c/p>\n\u003cp>He also explained that Andrew’s illness was clearly progressive and that his brain was shrinking, making it harder for him to process language and information. Nelson said he still didn’t have a diagnosis -- he believed it was a brand-new disease. \u003c/p>\n\u003cp>Nelson planned to continue poring over the test results, conducting additional exams and communicating with others in the network. He also is analyzing Andrew’s muscle, skin and blood to see whether any mutated gene is expressed abnormally. \u003c/p>\n\u003cp>Even in the absence of a clear diagnosis, Nelson said, rare diseases like Andrew’s help educate scientists and may help other patients. “These are the people we as a society will owe a great debt of gratitude,” he said. “They are effectively donating their lives to this process.” \u003c/p>\n\u003cp>Lynn Whittaker was disappointed. “We are still left with just hope that they will come up with something,” she lamented. “What else do we have?” \u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>Andrew said his relatives have asked if he’s scared the doctors will find something. “I’m more scared if they don’t,” he replied.\u003c/p>\n\n",
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"nprByline": "\u003cstrong>\u003ca href=\"http://khn.org/news/author/anna-gorman/\"_blank\">Anna Gorman \u003c/strong>\u003c/a>\u003c/br>Kaiser Health News",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>WHITTIER, Calif. -- Lynn Whittaker stood in the hallway of her home looking at the framed photos on the wall. In one, her son Andrew is playing high school water polo. In another, he’s holding a trombone.\u003cbr>\nThe images show no hint of his life today: the seizures that leave him temporarily paralyzed, the weakness that makes him fall over, his labored speech, his scrambled thoughts.\u003c/p>\n\u003cp>Andrew, 28, can no longer feed himself or walk on his own. The past nine years have been a blur of doctor appointments, hospital visits and medical tests that have failed to produce answers.\u003c/p>\n\u003cp>“You name it, he doesn’t have it,” his mother said. \u003c/p>\n\u003cp>Andrew has never had a clear diagnosis. He and his family are in a torturous state of suspense, hanging their hopes on every new exam and evaluation. \u003c/p>\n\u003cp>Recently, they have sought help from the Undiagnosed Diseases Network, a federally funded coalition of universities, clinicians, hospitals and researchers dedicated to solving the nation’s toughest medical mysteries. The doctors and scientists in the network harness advances in genetic science to identify rare, sometimes unknown, illnesses.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003cdiv class='utils-parseShortcode-shortcodes-__shortcodes__shortcodeWrapper'>\n \u003ciframe width='100%' height='166'\n scrolling='no' frameborder='no'\n src='https://w.soundcloud.com/player/?url=https://api.soundcloud.com/tracks/319736138&visual=true&color=ff5500&auto_play=false&hide_related=false&show_comments=true&show_user=true&show_reposts=false'\n title='https://api.soundcloud.com/tracks/319736138'>\n \u003c/iframe>\n \u003c/div>\u003c/p>\u003cp>\u003c/p>\n\u003cp>At UCLA, one of the network’s sites, Andrew’s medical team would map his genetic makeup, then bring him in for a week of exams and consultations with specialists.\u003c/p>\n\u003cp>\u003cstrong>Writing A New Disease Encyclopedia\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>The Undiagnosed Diseases Network was founded in 2015 with a $43 million grant from the National Institutes of Health (NIH). Building on work already being done at NIH, the initiative expanded to include universities across the country: Duke, Columbia and Stanford are among the other sites. The goals are to provide answers for patients with mysterious diseases and to learn more about the disorders.\u003cbr>\nA proposal last month by President Donald Trump to cut the NIH budget by $5.8 billion could put the program in jeopardy.\u003c/p>\n\u003cp>Even with the best technology and the finest brains at work, progress is slow. Since its launch, the network has received nearly 1,400 applications on behalf of patients. It has accepted 545 for review so far. Just 74 of the cases have been diagnosed, including 11 at UCLA. Andrew Whittaker’s case is among many in progress.\u003c/p>\n\u003cp>It’s like battling “an unknown enemy,” said Euan Ashley, one of the principal investigators of the network’s Stanford University site. “That is a particular form of torment that other patients don’t have.” \u003c/p>\n\u003cp>A diagnosis can end families’ painful odyssey while helping physicians and scientists better understand rare diseases and human physiology, said Rachel Ramoni, former executive director of the network, which is based at Harvard University. \u003c/p>\n\u003cp>Researchers throughout the network use advanced medical technology. For example, to study patients’ gene expression and disease progression, they can make models using nearly transparent zebrafish, whose genetic structure is similar to that of humans. And scientists can conduct whole genome sequencing, which allows the medical team to read a patient’s DNA and identify changes that can reveal what may be causing a disease.\u003c/p>\n\u003cp>“We have powerful techniques to look at every gene that is being expressed as well as every gene that is inherited,” said Stanley Nelson, one of UCLA’s principal investigators and the lead doctor on Andrew’s case. “This is an example of true precision medicine.” \u003c/p>\n\u003cp>Nelson said the network can examine all known genes -- not just the ones believed to have mutations that cause diseases. Doing that can lead to the discovery of new illnesses.\u003c/p>\n\u003cp>“Part of what we have to do is keep building that library, that encyclopedia of what gene and what gene mutations cause what symptoms,” Nelson said. “It’s just incomplete at this moment.” \u003c/p>\n\u003cp>Already the work is helping patients and their families come to terms with their illnesses. In one case, at Stanford, a toddler was diagnosed with two rare diseases, including a connective tissue disorder called Marfan Syndrome, after doctors conducted a form of sequencing that looks for changes in coded genetic segments known as exons. \u003c/p>\n\u003cp>Sometimes answers come from something decidedly lower-tech: collaboration among clinicians and researchers who share experiences, data and expertise.\u003c/p>\n\u003cp>“A lot of times your ability to be diagnosed depends on who is in the room,” Ramoni said. “And what we are doing with the network is we are expanding exponentially the number of people in the room.”\u003cbr>\nDoctors at one institution might think their patient is a unique case, only to learn that colleagues elsewhere have a patient with a similar illness. But even when diseases are diagnosed or gene mutations are discovered, treatments may still not be available. \u003c/p>\n\u003cp>\u003cstrong>A Life-Changing Mystery\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>Andrew Whittaker’s odyssey began one afternoon at age 19, when he started trembling and couldn’t speak. Doctors suspected he was suffering from anxiety and prescribed medication to control it. But Andrew said he continued to have “episodes,” during which everything just went blank.\u003c/p>\n\u003cp>“It’s like there’s not enough blood going to your brain,” he said. “You can’t think.” \u003c/p>\n\u003cp>Andrew also started losing his balance and falling off his bicycle. The family visited several hospitals. Doctors discovered that the receptors in his brain were malfunctioning and that he lacked sufficient dopamine, a chemical compound in the body responsible for transmitting signals between nerve cells. As a result, Andrew has some symptoms similar to those of Parkinson’s disease. Doctors also confirmed he was having seizures. \u003c/p>\n\u003cp>Still, Andrew’s symptoms didn’t add up to any known disease.\u003c/p>\n\u003cp>One afternoon last fall at precisely noon, as Andrew sat propped up on the living room couch, Lynn’s phone alarm sounded, signaling it was time for his medication. Lynn pried open Andrew’s hand, which was clenched into a fist, and dropped in the pills. \u003c/p>\n\u003cp>To keep Andrew from falling, the family has lowered his bed and removed carpet from the house. They also bought him a wheelchair. Their precautions don’t always work. One morning, Lynn was in the kitchen when she heard a crash. “I ran in there and he’s laid flat on his back,” she said. \u003c/p>\n\u003cp>Andrew is close to his mom. But he also gets frustrated. He can’t shower or dress without her help. He’s had to give up the things he loved to do: printing T-shirts. Skateboarding. Shooting short films. He’s lost friends and can’t imagine dating anymore.\u003c/p>\n\u003cp>“Girlfriends? Forget about it,” he said, his face twitching as he talks. “They want a guy who can do stuff for them, not the other way around.” \u003c/p>\n\u003cp>\u003cstrong>Running The Medical Gauntlet\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>On a Monday morning in late January, Andrew and his parents were in an exam room at UCLA. Lynn teased her son, saying she was going to put him in a freezer until doctors figured out what was wrong.\u003cbr>\n“Then we’ll pull you back out again,” she said, smiling.\u003c/p>\n\u003cp>“I’ll never get pulled out,” Andrew responded. \u003c/p>\n\u003cp>“Yes, you will,” she said. “You will.”\u003c/p>\n\u003cp>Nelson, Andrew’s main doctor, walked into the room. He told Andrew he’d read through the medical records. “We’re going to try to figure you out.” \u003c/p>\n\u003cp>The work Nelson does is personal. His teenage son, Dylan, has Duchenne muscular dystrophy, a genetic disorder that causes muscle degeneration and weakness. Nelson knows his son’s disease will eventually take his life, but he said having a diagnosis makes all the difference. \u003c/p>\n\u003cp>“My heart very much goes out to the families that don’t even get an adequate diagnosis,” he said.\u003cbr>\nNelson suspects that Andrew’s disease is genetic as well. \u003c/p>\n\u003cp>He asked the Whittakers to describe their son’s journey and he conducted a short physical exam, asking Andrew to push against his hand and touch his own nose. Andrew trembled and his shoulders tensed, but he did it.\u003c/p>\n\u003cp>The rest of the week, Andrew underwent several other diagnostic tests, including a muscle biopsy, an EEG, MRI and a lumbar puncture. He remained upbeat, though running the medical gauntlet clearly wore him out. He also met with UCLA specialists in brain degeneration and muscle and nerve disorders. \u003c/p>\n\u003cp>At week’s end, Nelson sat down with the family to explain what he’d found. He had reviewed Andrew’s genome and compared it with that of both parents. Andrew had one copy of a defective gene that leads to Parkinson’s but the genome sequencing didn’t show a second copy, without which it could not be Parkinson’s.\u003c/p>\n\u003cp>He also explained that Andrew’s illness was clearly progressive and that his brain was shrinking, making it harder for him to process language and information. Nelson said he still didn’t have a diagnosis -- he believed it was a brand-new disease. \u003c/p>\n\u003cp>Nelson planned to continue poring over the test results, conducting additional exams and communicating with others in the network. He also is analyzing Andrew’s muscle, skin and blood to see whether any mutated gene is expressed abnormally. \u003c/p>\n\u003cp>Even in the absence of a clear diagnosis, Nelson said, rare diseases like Andrew’s help educate scientists and may help other patients. “These are the people we as a society will owe a great debt of gratitude,” he said. “They are effectively donating their lives to this process.” \u003c/p>\n\u003cp>Lynn Whittaker was disappointed. “We are still left with just hope that they will come up with something,” she lamented. “What else do we have?” \u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Andrew said his relatives have asked if he’s scared the doctors will find something. “I’m more scared if they don’t,” he replied.\u003c/p>\n\n\u003c/div>\u003c/p>",
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"disqusTitle": "Hype Offers Hope -- and Risks -- to Cancer Patients",
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"content": "\u003cp>After Michael Uvanni’s older brother, James, was diagnosed with a deadly form of skin cancer, it seemed as if everyone told the family what they wanted to hear: Have hope. You can beat this, and we are here to help.\u003c/p>\n\u003cp>The brothers met with doctors at a half-dozen of the country’s best hospitals, all with impressive credentials that inspired confidence.\u003c/p>\n\u003cp>Michael Uvanni was in awe when he visited the University of Texas MD Anderson Cancer Center in Houston, one of the world’s most respected cancer hospitals. It was like seeing the Grand Canyon, said Uvanni, 66, of Rome, N.Y. “You never get used to the size and scope.”\u003c/p>\n\u003cp>Even the MD Anderson logo on buses and buildings — with “Cancer” crossed out in red, above the words “Making cancer history” — made the family’s battle seem winnable.\u003c/p>\n\u003cp>“I thought they were going to save him,” said Uvanni, an interior designer.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Patients and families are bombarded with the news that the country is winning the war against cancer. The news media hypes research results to attract readers. Drug companies promise “a chance to live longer” to boost sales. Hospitals woo paying customers with ads that appeal to patients’ fears and hopes.\u003c/p>\n\u003cp>“I’m starting to hear more and more that we are better than I think we really are,” said Dr. Otis Brawley, chief medical officer at the American Cancer Society. “We’re starting to believe our own bullshit.”\u003c/p>\n\u003cp>The consequences are real — and they can be deadly. Patients and their families have bought into treatments that either don’t work, cost a fortune or cause life-threatening side effects.\u003c/p>\n\u003cp>“We have a lot of patients who spend their families into bankruptcy getting a hyped therapy that [many] know is worthless,” Brawley said. Some choose a medicine that “has a lot of hype around it and unfortunately lose their chance for a cure.”\u003c/p>\n\u003cp>Although scientists have made important strides in recent years, and many early-stage cancers can now be cured, most of those with advanced cancer eventually die of their disease.\u003c/p>\n\u003cp>For Uvanni, hope gave way to crushing disappointment when his brother’s health declined and he died from metastatic melanoma in 2014.\u003c/p>\n\u003cp>“You get your hopes up, and then you are dropped off the edge of a cliff,” said Uvanni. “That’s the worst thing in the world.”\u003c/p>\n\u003cp>Caregivers like Uvanni can suffer prolonged grief and guilt if their loved ones are riddled with side effects and don’t survive as long as the family expected, noted Holly Prigerson, co-director of the Center for Research on End-of-Life Care at Weill Cornell Medical College.\u003c/p>\n\u003cp>For decades, researchers have rolled out new cancer therapies with great fanfare, announcing that science has at last found a key to ending one of the world’s great plagues, said Dr. Vinay Prasad, an assistant professor of medicine at Oregon Health & Science University. When such efforts fail to live up to expectations, the cancer world simply moves on to the next big idea.\u003c/p>\n\u003cp>Hyping early scientific results — based on lab tests or animal studies — can attract investors that allow researchers to continue their work. Positive results can lead biotech firms to be bought out by larger drug companies.\u003c/p>\n\u003cp>“It’s in the interest of almost every stakeholder in the health system to be optimistic about these therapies,” said Dr. Walid Gellad, co-director of the Center for Pharmaceutical Policy and Prescribing at the University of Pittsburgh.\u003c/p>\n\u003cp>Of course, there is plenty of money to be made.\u003c/p>\n\u003cp>The U.S. spent nearly $88 billion treating cancer in 2014, with patients paying nearly $4 billion out-of-pocket, according to the American Cancer Society Cancer Action Network. Spending on cancer, a disease that most afflicts the aging, is predicted to soar as people live longer.\u003c/p>\n\u003cp>“While many people are trying to make patients’ lives healthier and longer and better, there are others that are exploiting their vulnerability,” said Dr. Leonard Saltz, chief of the gastrointestinal oncology service at New York’s Memorial Sloan Kettering Cancer Center.\u003c/p>\n\u003cp>Others argue that the excitement about cancer research is justified. A spokeswoman for the Pharmaceutical Research and Manufacturers of America, an industry group, said cancer patients have good reason for optimism.\u003c/p>\n\u003cp>“We continue to see great strides in identifying the genetic mutations and related factors that can drive the seemingly random formation of abnormal cells in cancer,” spokeswoman Holly Campbell said in a statement. “In the last decade, we’ve seen a number of scientific advances transform the landscape of many cancers.”\u003c/p>\n\u003cp>\u003cstrong>Promises To Cure Abound\u003cbr>\n\u003c/strong>\u003cbr>\nEven the country’s top scientists sometimes get carried away.\u003c/p>\n\u003cp>In 1998, Nobel laureate James Watson — who co-discovered the structure of DNA — told The New York Times that scientists would “cure cancer in two years” using drugs that block tumor blood supplies. At that time, the drugs had succeeded only in mice.\u003c/p>\n\u003cp>In 2003, the director of the National Cancer Institute, Dr. Andrew von Eschenbach, announced a goal of “eliminating suffering and death due to cancer by 2015” by better understanding tumor genetics.\u003c/p>\n\u003cp>Last year, when President Barack Obama announced the Cancer Moonshot, which aims to accelerate and better coordinate research, he said, “Let’s make America the country that cures cancer once and for all.”\u003c/p>\n\u003cp>In a recent interview, von Eschenbach acknowledged he didn’t communicate his goal well.\u003c/p>\n\u003cp>“We all fall into that trap,” said von Eschenbach, now a senior fellow at the Milken Institute, a health and public policy think tank. “We’re offering what we have, but making it appear that it’s more than what it is.”\u003c/p>\n\u003cp>It’s easy to see how patients’ hopes are raised, said Timothy Turnham, former executive director at the Melanoma Research Foundation, an advocacy group. Researchers are frequently overly enthusiastic about early discoveries that have little chance of leading to a new drug.\u003c/p>\n\u003cp>“There is a disconnect between what researchers think is statistically significant and what is really significant for patients,” Turnham said. “Patients hear ‘progress,’ and they think that means they’re going to be cured.”\u003c/p>\n\u003cp>\u003cstrong>A Marketing Blitz\u003cbr>\n\u003c/strong>\u003cbr>\nUvanni said his brother’s experience was nothing like the sunny images in TV commercials, in which smiling cancer patients hug their grandchildren, hike in the mountains and lead dance classes.\u003c/p>\n\u003cp>A TV commercial for the Bristol-Myers Squibb drug Opdivo projects the words “a chance to live longer” on the side of skyscrapers, as a captivated crowd looks on. In much smaller type, a footnote reveals that lung cancer patients taking Opdivo lived just 3.2 months longer than others.\u003c/p>\n\u003cp>A TV ad for Merck’s Keytruda features reassuring images of a smiling, healthy patient hugging her family — not fighting for breath or struggling to walk. Although the commercial notes that the people in the ad are portrayed by actors, the commercial claims the drug provides “a chance for a longer life. It’s Tru.”\u003c/p>\n\u003cp>“Your heart sinks when you see those ads,” Uvanni said. Seeing the family depicted in the ad, he said “makes you wonder if they’re going down the same path that we did.”\u003c/p>\n\u003cp>The Keytruda ad notes that 71 percent of patients given the drug were alive “at the time of patient follow-up,” compared with 58 percent of those who received chemotherapy. The ad doesn’t mention that the “time of follow-up” was 11 months.\u003c/p>\n\u003cp>“It’s not false; it’s just incomplete,” said pharmacist Harold DeMonaco, a visiting scientist at the Massachusetts Institute of Technology in Boston. “They don’t give patients or the patients’ family enough information to make a reasonable decision.”\u003c/p>\n\u003cp>In an interview, Merck senior vice president Jill DeSimone said that the company aims to be responsible with its advertising, noting that the Keytruda ad reminds patients to talk to their doctors. “The physician is the ultimate decider on treatment,” DeSimone said.\u003c/p>\n\u003cp>In a statement, Bristol-Myers’ senior vice president Teresa Bitetti said that Opdivo ads play “an important role in educating patients about new treatment options and fostering informed conversations between patients and their doctors.”\u003c/p>\n\u003cp>Hospitals also have drawn criticism for overstating their success in treating cancer. In 1996, Cancer Treatment Centers of America, a for-profit chain, settled allegations from the Federal Trade Commission that “they made false and unsubstantiated claims in advertising and promoting their cancer treatments.”\u003c/p>\n\u003cp>The company’s current commercials — dozens of which are featured on their website — boast of offering “genomic testing” and “precision cancer treatment.”\u003c/p>\n\u003cp>The commercials don’t tell patients that these tests — which aim to pair cancer patients with drugs that target the specific mutations in their tumors — are rarely successful, Prasad said. In clinical trials, these tests have matched only 6.4 percent of patients with a drug, according to Prasad’s 2016 article in Nature. Because these drugs only manage to shrink a fraction of tumors, Prasad estimates that just 1.5 percent of patients actually benefit from precision oncology.\u003c/p>\n\u003cp>In a statement, Cancer Treatment Centers of America said, “We use national media to help educate cancer patients and their families about the latest diagnostic tools and treatment options. … All of our advertising undergoes meticulous review for clinical accuracy as well as legal approval to ensure we tell our story in an informative and responsible manner, and in compliance with federal guidelines.”\u003c/p>\n\u003cp>Spending on ads for hospitals that treat cancer soared 220 percent from $54 million in 2005 to $173 million in 2014, according to a 2016 article in JAMA Internal Medicine. Ads for Cancer Treatment Centers of America accounted for nearly 60 percent of all total cancer center advertising.\u003c/p>\n\u003cp>\u003cstrong>Targeting Melanoma\u003cbr>\n\u003c/strong>\u003cbr>\nFor more than a decade, the Food and Drug Administration approved no new treatments for metastatic melanoma. Patients typically died within a year of diagnosis.\u003c/p>\n\u003cp>Since 2011, however, the FDA has approved 11 new treatments, including several immunotherapies, which aim to harness the immune system to fight cancer. Last year, doctors leading a clinical trial announced that the median survival of patients taking the drug Keytruda had grown to two years. Forty percent of patients were alive three years later, according to the clinical trial, presented at the American Society of Clinical Oncology.\u003c/p>\n\u003cp>Researchers have tested immunotherapies against a variety of tumors, leading to approvals in lung cancer, kidney cancer, bladder cancer and others.\u003c/p>\n\u003cp>Such success has led doctors to label cancer immunotherapy as a “game changer.” Newspapers and magazines call it a “breakthrough.” And hospitals laud them as “a miracle in the making.”\u003c/p>\n\u003cp>Yet these treatments — which were initially assumed to be gentler than chemotherapy — can provoke fatal immune system attacks on the lungs, kidneys, heart and other organs.\u003c/p>\n\u003cp>And there are no approved immunotherapies for tumors of the breast, colon, prostate and pancreas.\u003c/p>\n\u003cp>Only about 10 percent of all cancer patients can expect to benefit from immunotherapy, Prasad said.\u003c/p>\n\u003cp>Uvanni’s brother — who tried immunotherapy, as well as a number of other approved and experimental treatments — survived 3½ years after his diagnosis. That might lead many oncologists to describe his story as a success.\u003c/p>\n\u003cp>Uvanni sees no reason to celebrate. He wanted more than short-term survival for his brother.\u003c/p>\n\u003cp>“I thought we were going to have a treatment where we’d at least have a good block of quality time,” Uvanni said.\u003c/p>\n\u003cp>But treatments meant to control the cancer only made him sick. Some caused flu-like symptoms, with fever, chills and shakes. Others left him nauseated, unable to eat or move his bowels. Others caused dangerous infections that sent him to the emergency room.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>“I hope that if something like that happens to me,” Uvanni said, “I would be strong enough to say no to treatment.”\u003c/p>\n\n",
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"nprByline": "\u003cstrong>\u003ca href=\"http://khn.org/news/author/liz-szabo/\" target=\"_blank\">Liz Szabo \u003c/strong>\u003c/a>\u003c/br>Kaiser Health News",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>After Michael Uvanni’s older brother, James, was diagnosed with a deadly form of skin cancer, it seemed as if everyone told the family what they wanted to hear: Have hope. You can beat this, and we are here to help.\u003c/p>\n\u003cp>The brothers met with doctors at a half-dozen of the country’s best hospitals, all with impressive credentials that inspired confidence.\u003c/p>\n\u003cp>Michael Uvanni was in awe when he visited the University of Texas MD Anderson Cancer Center in Houston, one of the world’s most respected cancer hospitals. It was like seeing the Grand Canyon, said Uvanni, 66, of Rome, N.Y. “You never get used to the size and scope.”\u003c/p>\n\u003cp>Even the MD Anderson logo on buses and buildings — with “Cancer” crossed out in red, above the words “Making cancer history” — made the family’s battle seem winnable.\u003c/p>\n\u003cp>“I thought they were going to save him,” said Uvanni, an interior designer.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Patients and families are bombarded with the news that the country is winning the war against cancer. The news media hypes research results to attract readers. Drug companies promise “a chance to live longer” to boost sales. Hospitals woo paying customers with ads that appeal to patients’ fears and hopes.\u003c/p>\n\u003cp>“I’m starting to hear more and more that we are better than I think we really are,” said Dr. Otis Brawley, chief medical officer at the American Cancer Society. “We’re starting to believe our own bullshit.”\u003c/p>\n\u003cp>The consequences are real — and they can be deadly. Patients and their families have bought into treatments that either don’t work, cost a fortune or cause life-threatening side effects.\u003c/p>\n\u003cp>“We have a lot of patients who spend their families into bankruptcy getting a hyped therapy that [many] know is worthless,” Brawley said. Some choose a medicine that “has a lot of hype around it and unfortunately lose their chance for a cure.”\u003c/p>\n\u003cp>Although scientists have made important strides in recent years, and many early-stage cancers can now be cured, most of those with advanced cancer eventually die of their disease.\u003c/p>\n\u003cp>For Uvanni, hope gave way to crushing disappointment when his brother’s health declined and he died from metastatic melanoma in 2014.\u003c/p>\n\u003cp>“You get your hopes up, and then you are dropped off the edge of a cliff,” said Uvanni. “That’s the worst thing in the world.”\u003c/p>\n\u003cp>Caregivers like Uvanni can suffer prolonged grief and guilt if their loved ones are riddled with side effects and don’t survive as long as the family expected, noted Holly Prigerson, co-director of the Center for Research on End-of-Life Care at Weill Cornell Medical College.\u003c/p>\n\u003cp>For decades, researchers have rolled out new cancer therapies with great fanfare, announcing that science has at last found a key to ending one of the world’s great plagues, said Dr. Vinay Prasad, an assistant professor of medicine at Oregon Health & Science University. When such efforts fail to live up to expectations, the cancer world simply moves on to the next big idea.\u003c/p>\n\u003cp>Hyping early scientific results — based on lab tests or animal studies — can attract investors that allow researchers to continue their work. Positive results can lead biotech firms to be bought out by larger drug companies.\u003c/p>\n\u003cp>“It’s in the interest of almost every stakeholder in the health system to be optimistic about these therapies,” said Dr. Walid Gellad, co-director of the Center for Pharmaceutical Policy and Prescribing at the University of Pittsburgh.\u003c/p>\n\u003cp>Of course, there is plenty of money to be made.\u003c/p>\n\u003cp>The U.S. spent nearly $88 billion treating cancer in 2014, with patients paying nearly $4 billion out-of-pocket, according to the American Cancer Society Cancer Action Network. Spending on cancer, a disease that most afflicts the aging, is predicted to soar as people live longer.\u003c/p>\n\u003cp>“While many people are trying to make patients’ lives healthier and longer and better, there are others that are exploiting their vulnerability,” said Dr. Leonard Saltz, chief of the gastrointestinal oncology service at New York’s Memorial Sloan Kettering Cancer Center.\u003c/p>\n\u003cp>Others argue that the excitement about cancer research is justified. A spokeswoman for the Pharmaceutical Research and Manufacturers of America, an industry group, said cancer patients have good reason for optimism.\u003c/p>\n\u003cp>“We continue to see great strides in identifying the genetic mutations and related factors that can drive the seemingly random formation of abnormal cells in cancer,” spokeswoman Holly Campbell said in a statement. “In the last decade, we’ve seen a number of scientific advances transform the landscape of many cancers.”\u003c/p>\n\u003cp>\u003cstrong>Promises To Cure Abound\u003cbr>\n\u003c/strong>\u003cbr>\nEven the country’s top scientists sometimes get carried away.\u003c/p>\n\u003cp>In 1998, Nobel laureate James Watson — who co-discovered the structure of DNA — told The New York Times that scientists would “cure cancer in two years” using drugs that block tumor blood supplies. At that time, the drugs had succeeded only in mice.\u003c/p>\n\u003cp>In 2003, the director of the National Cancer Institute, Dr. Andrew von Eschenbach, announced a goal of “eliminating suffering and death due to cancer by 2015” by better understanding tumor genetics.\u003c/p>\n\u003cp>Last year, when President Barack Obama announced the Cancer Moonshot, which aims to accelerate and better coordinate research, he said, “Let’s make America the country that cures cancer once and for all.”\u003c/p>\n\u003cp>In a recent interview, von Eschenbach acknowledged he didn’t communicate his goal well.\u003c/p>\n\u003cp>“We all fall into that trap,” said von Eschenbach, now a senior fellow at the Milken Institute, a health and public policy think tank. “We’re offering what we have, but making it appear that it’s more than what it is.”\u003c/p>\n\u003cp>It’s easy to see how patients’ hopes are raised, said Timothy Turnham, former executive director at the Melanoma Research Foundation, an advocacy group. Researchers are frequently overly enthusiastic about early discoveries that have little chance of leading to a new drug.\u003c/p>\n\u003cp>“There is a disconnect between what researchers think is statistically significant and what is really significant for patients,” Turnham said. “Patients hear ‘progress,’ and they think that means they’re going to be cured.”\u003c/p>\n\u003cp>\u003cstrong>A Marketing Blitz\u003cbr>\n\u003c/strong>\u003cbr>\nUvanni said his brother’s experience was nothing like the sunny images in TV commercials, in which smiling cancer patients hug their grandchildren, hike in the mountains and lead dance classes.\u003c/p>\n\u003cp>A TV commercial for the Bristol-Myers Squibb drug Opdivo projects the words “a chance to live longer” on the side of skyscrapers, as a captivated crowd looks on. In much smaller type, a footnote reveals that lung cancer patients taking Opdivo lived just 3.2 months longer than others.\u003c/p>\n\u003cp>A TV ad for Merck’s Keytruda features reassuring images of a smiling, healthy patient hugging her family — not fighting for breath or struggling to walk. Although the commercial notes that the people in the ad are portrayed by actors, the commercial claims the drug provides “a chance for a longer life. It’s Tru.”\u003c/p>\n\u003cp>“Your heart sinks when you see those ads,” Uvanni said. Seeing the family depicted in the ad, he said “makes you wonder if they’re going down the same path that we did.”\u003c/p>\n\u003cp>The Keytruda ad notes that 71 percent of patients given the drug were alive “at the time of patient follow-up,” compared with 58 percent of those who received chemotherapy. The ad doesn’t mention that the “time of follow-up” was 11 months.\u003c/p>\n\u003cp>“It’s not false; it’s just incomplete,” said pharmacist Harold DeMonaco, a visiting scientist at the Massachusetts Institute of Technology in Boston. “They don’t give patients or the patients’ family enough information to make a reasonable decision.”\u003c/p>\n\u003cp>In an interview, Merck senior vice president Jill DeSimone said that the company aims to be responsible with its advertising, noting that the Keytruda ad reminds patients to talk to their doctors. “The physician is the ultimate decider on treatment,” DeSimone said.\u003c/p>\n\u003cp>In a statement, Bristol-Myers’ senior vice president Teresa Bitetti said that Opdivo ads play “an important role in educating patients about new treatment options and fostering informed conversations between patients and their doctors.”\u003c/p>\n\u003cp>Hospitals also have drawn criticism for overstating their success in treating cancer. In 1996, Cancer Treatment Centers of America, a for-profit chain, settled allegations from the Federal Trade Commission that “they made false and unsubstantiated claims in advertising and promoting their cancer treatments.”\u003c/p>\n\u003cp>The company’s current commercials — dozens of which are featured on their website — boast of offering “genomic testing” and “precision cancer treatment.”\u003c/p>\n\u003cp>The commercials don’t tell patients that these tests — which aim to pair cancer patients with drugs that target the specific mutations in their tumors — are rarely successful, Prasad said. In clinical trials, these tests have matched only 6.4 percent of patients with a drug, according to Prasad’s 2016 article in Nature. Because these drugs only manage to shrink a fraction of tumors, Prasad estimates that just 1.5 percent of patients actually benefit from precision oncology.\u003c/p>\n\u003cp>In a statement, Cancer Treatment Centers of America said, “We use national media to help educate cancer patients and their families about the latest diagnostic tools and treatment options. … All of our advertising undergoes meticulous review for clinical accuracy as well as legal approval to ensure we tell our story in an informative and responsible manner, and in compliance with federal guidelines.”\u003c/p>\n\u003cp>Spending on ads for hospitals that treat cancer soared 220 percent from $54 million in 2005 to $173 million in 2014, according to a 2016 article in JAMA Internal Medicine. Ads for Cancer Treatment Centers of America accounted for nearly 60 percent of all total cancer center advertising.\u003c/p>\n\u003cp>\u003cstrong>Targeting Melanoma\u003cbr>\n\u003c/strong>\u003cbr>\nFor more than a decade, the Food and Drug Administration approved no new treatments for metastatic melanoma. Patients typically died within a year of diagnosis.\u003c/p>\n\u003cp>Since 2011, however, the FDA has approved 11 new treatments, including several immunotherapies, which aim to harness the immune system to fight cancer. Last year, doctors leading a clinical trial announced that the median survival of patients taking the drug Keytruda had grown to two years. Forty percent of patients were alive three years later, according to the clinical trial, presented at the American Society of Clinical Oncology.\u003c/p>\n\u003cp>Researchers have tested immunotherapies against a variety of tumors, leading to approvals in lung cancer, kidney cancer, bladder cancer and others.\u003c/p>\n\u003cp>Such success has led doctors to label cancer immunotherapy as a “game changer.” Newspapers and magazines call it a “breakthrough.” And hospitals laud them as “a miracle in the making.”\u003c/p>\n\u003cp>Yet these treatments — which were initially assumed to be gentler than chemotherapy — can provoke fatal immune system attacks on the lungs, kidneys, heart and other organs.\u003c/p>\n\u003cp>And there are no approved immunotherapies for tumors of the breast, colon, prostate and pancreas.\u003c/p>\n\u003cp>Only about 10 percent of all cancer patients can expect to benefit from immunotherapy, Prasad said.\u003c/p>\n\u003cp>Uvanni’s brother — who tried immunotherapy, as well as a number of other approved and experimental treatments — survived 3½ years after his diagnosis. That might lead many oncologists to describe his story as a success.\u003c/p>\n\u003cp>Uvanni sees no reason to celebrate. He wanted more than short-term survival for his brother.\u003c/p>\n\u003cp>“I thought we were going to have a treatment where we’d at least have a good block of quality time,” Uvanni said.\u003c/p>\n\u003cp>But treatments meant to control the cancer only made him sick. Some caused flu-like symptoms, with fever, chills and shakes. Others left him nauseated, unable to eat or move his bowels. Others caused dangerous infections that sent him to the emergency room.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“I hope that if something like that happens to me,” Uvanni said, “I would be strong enough to say no to treatment.”\u003c/p>\n\n\u003c/div>\u003c/p>",
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"tagline": "The flip side of gentrification, told through one town",
"info": "Gentrification is changing cities across America, forcing people from neighborhoods they have long called home. Call them the displaced. Now those priced out of the Bay Area are looking for a better life in an unlikely place. American Suburb follows this migration to one California town along the Delta, 45 miles from San Francisco. But is this once sleepy suburb ready for them?",
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},
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"tagline": "Exploring the Bay Area, one question at a time",
"info": "KQED’s new podcast, Bay Curious, gets to the bottom of the mysteries — both profound and peculiar — that give the Bay Area its unique identity. And we’ll do it with your help! You ask the questions. You decide what Bay Curious investigates. And you join us on the journey to find the answers.",
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},
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"info": "KQED’s statewide radio news program providing daily coverage of issues, trends and public policy decisions.",
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"order": 8
},
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},
"link": "https://www.cityarts.net",
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"order": 1
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"info": "\u003cem>Code Switch\u003c/em>, which listeners will hear in the first part of the hour, has fearless and much-needed conversations about race. Hosted by journalists of color, the show tackles the subject of race head-on, exploring how it impacts every part of society — from politics and pop culture to history, sports and more.\u003cbr />\u003cbr />\u003cem>Life Kit\u003c/em>, which will be in the second part of the hour, guides you through spaces and feelings no one prepares you for — from finances to mental health, from workplace microaggressions to imposter syndrome, from relationships to parenting. The show features experts with real world experience and shares their knowledge. Because everyone needs a little help being human.\u003cbr />\u003cbr />\u003ca href=\"https://www.npr.org/podcasts/510312/codeswitch\">\u003cem>Code Switch\u003c/em> offical site and podcast\u003c/a>\u003cbr />\u003ca href=\"https://www.npr.org/lifekit\">\u003cem>Life Kit\u003c/em> offical site and podcast\u003c/a>\u003cbr />",
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"id": "commonwealth-club",
"title": "Commonwealth Club of California Podcast",
"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.",
"airtime": "THU 10pm, FRI 1am",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Commonwealth-Club-Podcast-Tile-360x360-1.jpg",
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"source": "Commonwealth Club of California"
},
"link": "/radio/program/commonwealth-club",
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}
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"tagline": "The conversation starts here",
"info": "KQED’s live call-in program discussing local, state, national and international issues, as well as in-depth interviews.",
"airtime": "MON-FRI 9am-11am, 10pm-11pm",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Forum-Podcast-Tile-703x703-1.jpg",
"imageAlt": "KQED Forum with Mina Kim and Alexis Madrigal",
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"source": "kqed",
"order": 9
},
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"id": "fresh-air",
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"hidden-brain": {
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"info": "Shankar Vedantam uses science and storytelling to reveal the unconscious patterns that drive human behavior, shape our choices and direct our relationships.",
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"airtime": "SUN 7pm-8pm",
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"source": "NPR"
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"info": "Guy Raz dives into the stories behind some of the world's best known companies. How I Built This weaves a narrative journey about innovators, entrepreneurs and idealists—and the movements they built.",
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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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"jerrybrown": {
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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. ",
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"order": 18
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},
"latino-usa": {
"id": "latino-usa",
"title": "Latino USA",
"airtime": "MON 1am-2am, SUN 6pm-7pm",
"info": "Latino USA, the radio journal of news and culture, is the only national, English-language radio program produced from a Latino perspective.",
"imageSrc": "https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/latinoUsa.jpg",
"officialWebsiteLink": "http://latinousa.org/",
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},
"link": "/radio/program/latino-usa",
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"rss": "https://feeds.npr.org/510016/podcast.xml"
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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",
"imageSrc": "https://cdn.kqed.org/wp-content/uploads/2024/04/Marketplace-Podcast-Tile-360x360-1.jpg",
"officialWebsiteLink": "https://www.marketplace.org/",
"meta": {
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"source": "American Public Media"
},
"link": "/radio/program/marketplace",
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"rss": "https://feeds.publicradio.org/public_feeds/marketplace-pm/rss/rss"
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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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"officialWebsiteLink": "https://mastersofscale.com/",
"meta": {
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"source": "WaitWhat"
},
"link": "/radio/program/masters-of-scale",
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"rss": "https://rss.art19.com/masters-of-scale"
}
},
"mindshift": {
"id": "mindshift",
"title": "MindShift",
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"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>",
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