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"disqusTitle": "Will California’s New 'Right to Try' Law Empower or Exploit Patients?",
"title": "Will California’s New 'Right to Try' Law Empower or Exploit Patients?",
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"content": "\u003cp>With the enactment of a new “Right to Try” law, California joins 31 other states that have already passed legislation to support patients’ efforts to access experimental drugs.\u003c/p>\n\u003cp>As of Jan. 1, state agencies and licensing boards will not penalize California doctors or hospitals that want to help patients directly petition pharmaceutical companies for the investigational drugs.\u003c/p>\n\u003cp>Proponents of the “Right to Try” movement had contended that doctors could be hesitant to help such patients because of the risk of using drugs or devices that haven’t passed FDA tests for safety and effectiveness.\u003c/p>\n\u003cp>[soundcloud url=\"https://api.soundcloud.com/tracks/300768363\" 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>The new law makes it clear that California doctors can proceed without fear of censure from the state’s medical board. It also eliminates other possible regulatory obstacles on the state level and creates processes for patient consent and data collection.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"The idea is to kind of get government out of the way in this situation and allow people to just go at it with a doctor to try to get access to these potentially life-saving medications,” said the law’s sponsor \u003ca href=\"http://asmdc.org/members/a57/\" target=\"_blank\">Ian Calderon\u003c/a>, the Democratic majority leader in the California Assembly.\u003c/p>\n\u003cp>Supporters of “Right to Try” laws sometimes frame them as the logical counterpart to “Right to Die” laws, which allow physician-assisted suicide for terminally ill patients. California enacted such a law in 2016.\u003c/p>\n\u003cp>\"The patient community is saying, ‘We are smart, we’re informed, we feel it is our right to try some of these therapies, because we’re going to die anyway,’” said Lina Clark, a patients’ rights \u003ca href=\"http://www.hopenowforals.org\" target=\"_blank\">activist\u003c/a> in San Diego.\u003c/p>\n\u003cp>Clark’s husband, \u003ca href=\"http://sci.sdsu.edu/geology/remembering-dr-david-huntley/\" target=\"_blank\">David Huntley\u003c/a>, had wanted to try an experimental drug before his death in 2015 from \u003ca href=\"https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Amyotrophic-Lateral-Sclerosis-ALS-Fact-Sheet\" target=\"_blank\">amyotrophic lateral sclerosis\u003c/a> (ALS).\u003c/p>\n\u003cfigure id=\"attachment_278363\" class=\"wp-caption alignnone\" style=\"max-width: 720px\">\u003cimg class=\"size-full wp-image-278363\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/12/Right-to-Try-Huntley-Sacramento.jpg\" alt=\"David Huntley testified in favor of California's "Right to Try" bill in April, 2015. He died three months later. \" width=\"720\" height=\"960\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Sacramento.jpg 720w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Sacramento-160x213.jpg 160w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Sacramento-240x320.jpg 240w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Sacramento-375x500.jpg 375w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Sacramento-520x693.jpg 520w\" sizes=\"(max-width: 720px) 100vw, 720px\">\u003cfigcaption class=\"wp-caption-text\">David Huntley testified in favor of California's \"Right to Try\" bill in April 2015. He died three months later. \u003ccite>(Courtesy of Lina Clark)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The FDA already offers a \u003ca href=\"http://www.fda.gov/NewsEvents/PublicHealthFocus/ExpandedAccessCompassionateUse/default.htm\" target=\"_blank\">process\u003c/a>, called “expanded access” or “compassionate use,” for some patients to obtain experimental drugs. But critics say it’s too slow and cumbersome, even though the FDA approves more than 99 percent of requests that come through that pipeline.\u003c/p>\n\u003cp>“It just takes so long, it’s inefficient, it’s ridiculous,” Calderon said of the FDA process. “I don’t understand.”\u003c/p>\n\u003cp>As the state laws proliferate, clinicians and medical ethicists are growing increasingly concerned about the potential safety and financial risks to patients.\u003c/p>\n\u003cp>“If we take the FDA out of it, how do we protect people from physicians or drug companies that will want to sell them things and will want to prey on their desperation?” asked \u003ca href=\"http://healthpolicy.ucsf.edu/people/r-adams-dudley-md-mba\" target=\"_blank\">Dr. R. Adams Dudley\u003c/a>, director of UCSF’s \u003ca href=\"http://healthvalue.ucsf.edu/\" target=\"_blank\">Center for Healthcare Value\u003c/a>.\u003c/p>\n\u003cp>Dudley says the FDA and the clinical trial process were put in place for a reason.\u003c/p>\n\u003cp>\"Have we somehow gotten better at managing snake oil salesmen now, than we were back when we decided we needed an FDA in the first place?\" Dudley said.\u003c/p>\n\u003cp>Under the new law, all that patients and doctors can really do is \u003cem>ask\u003c/em> for an experimental drug. Drug companies don’t have to give it to them, and insurance companies don’t have to pay for it.\u003c/p>\n\u003cp>Dudley fears that family members of a patient might exhaust their life savings trying a drug that hasn’t been proven to work -- and could even speed up death or increase end-of-life suffering.\u003c/p>\n\u003cp>That’s one reason the \u003ca href=\"http://www.nationalnursesunited.org/site/entry/california-nurses-association\" target=\"_blank\">California Nurses Association\u003c/a>, among other groups, strongly opposed the bill.\u003c/p>\n\u003cp>“It basically turns patients -- terminally-ill patients -- into guinea pigs,” said Don Nielsen, the CNA's director of government relations.\u003c/p>\n\u003cp>“There’s really no demonstrated need for this,” Nielsen said. “This so-called \"Right to Try\" movement is nothing more than boilerplate legislation promoted by the far-right Goldwater Institute.”\u003c/p>\n\u003cp>(While the Arizona-based Goldwater Institute has taken an active role in \u003ca href=\"http://goldwaterinstitute.org/en/work/topics/healthcare/right-to-try/right-try/\" target=\"_blank\">promoting\u003c/a> the laws, in California and other states, Calderon insists he came upon the issue independently, while researching physician-assisted suicide for California.)\u003c/p>\n\u003cp>It’s unclear how effective the state laws have been. There’s no data yet on how many patients have used the state laws, compared to the FDA’s expanded access process.\u003c/p>\n\u003cp>Dudley predicts the state-based Right to Try laws may eventually face a court challenge and be declared unconstitutional. That’s because federal law gives the power to regulate pharmaceuticals to the FDA, not the states.\u003c/p>\n\u003cp>But Clark thinks Congress might be open to amending that authority.\u003c/p>\n\u003cp>“It’s kind of parallel with what’s going on with medical marijuana,” Clark said. “It’s legal at the state level, but we still have a federal Drug Enforcement Agency to whom it is illegal. It’s not an ideal situation. It’s kind of similar to that. We ultimately need a federal law.”\u003c/p>\n\u003cp>A federal version of Right to Try was introduced in the Senate last year. In the meantime, a recently passed federal law addressing medical research, the \u003ca href=\"http://docs.house.gov/billsthisweek/20161128/CPRT-114-HPRT-RU00-SAHR34.pdf\" target=\"_blank\">21st Century Cures Act\u003c/a>, contains a \u003ca href=\"https://www.statnews.com/pharmalot/2016/11/28/21st-century-experimental-drugs/\" target=\"_blank\">provision\u003c/a> that requires drug companies to be more transparent about how they decide who gets access to experimental drugs and how long it will take.\u003c/p>\n\u003cfigure id=\"attachment_278364\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-278364\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-800x800.jpg\" alt='Lina Clark and her husband David Huntley on vacation in Croatia in 2014, before he succumbed to ALS. The disease made both of them activists for the \"right to try\" in California. ' width=\"800\" height=\"800\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-800x800.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-160x160.jpg 160w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-768x768.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing.jpg 960w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-240x240.jpg 240w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-375x375.jpg 375w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-520x520.jpg 520w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-32x32.jpg 32w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-50x50.jpg 50w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-64x64.jpg 64w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-96x96.jpg 96w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-128x128.jpg 128w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-150x150.jpg 150w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Lina Clark and her husband David Huntley on vacation in Croatia in 2014, before he succumbed to ALS. The disease made both of them activists for the \"Right to Try\" in California. \u003ccite>(Courtesy of Lina Clark)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>Editor's note: The original version of this article incorrectly stated the California \"Right To Try\" law allowed access to an experimental drug at any stage. The law actually only allows a patient to request a drug that has passed through Phase I of the FDA clinical process, when a candidate drug is tested for toxicity on otherwise healthy subjects.\u003cbr>\n\u003c/em>\u003c/p>\n\n",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003cp>With the enactment of a new “Right to Try” law, California joins 31 other states that have already passed legislation to support patients’ efforts to access experimental drugs.\u003c/p>\n\u003cp>As of Jan. 1, state agencies and licensing boards will not penalize California doctors or hospitals that want to help patients directly petition pharmaceutical companies for the investigational drugs.\u003c/p>\n\u003cp>Proponents of the “Right to Try” movement had contended that doctors could be hesitant to help such patients because of the risk of using drugs or devices that haven’t passed FDA tests for safety and effectiveness.\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/300768363&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/300768363'>\n \u003c/iframe>\n \u003c/div>\u003c/p>\u003cp>\u003c/p>\n\u003cp>The new law makes it clear that California doctors can proceed without fear of censure from the state’s medical board. It also eliminates other possible regulatory obstacles on the state level and creates processes for patient consent and data collection.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>",
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"content": "\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"The idea is to kind of get government out of the way in this situation and allow people to just go at it with a doctor to try to get access to these potentially life-saving medications,” said the law’s sponsor \u003ca href=\"http://asmdc.org/members/a57/\" target=\"_blank\">Ian Calderon\u003c/a>, the Democratic majority leader in the California Assembly.\u003c/p>\n\u003cp>Supporters of “Right to Try” laws sometimes frame them as the logical counterpart to “Right to Die” laws, which allow physician-assisted suicide for terminally ill patients. California enacted such a law in 2016.\u003c/p>\n\u003cp>\"The patient community is saying, ‘We are smart, we’re informed, we feel it is our right to try some of these therapies, because we’re going to die anyway,’” said Lina Clark, a patients’ rights \u003ca href=\"http://www.hopenowforals.org\" target=\"_blank\">activist\u003c/a> in San Diego.\u003c/p>\n\u003cp>Clark’s husband, \u003ca href=\"http://sci.sdsu.edu/geology/remembering-dr-david-huntley/\" target=\"_blank\">David Huntley\u003c/a>, had wanted to try an experimental drug before his death in 2015 from \u003ca href=\"https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Amyotrophic-Lateral-Sclerosis-ALS-Fact-Sheet\" target=\"_blank\">amyotrophic lateral sclerosis\u003c/a> (ALS).\u003c/p>\n\u003cfigure id=\"attachment_278363\" class=\"wp-caption alignnone\" style=\"max-width: 720px\">\u003cimg class=\"size-full wp-image-278363\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/12/Right-to-Try-Huntley-Sacramento.jpg\" alt=\"David Huntley testified in favor of California's "Right to Try" bill in April, 2015. He died three months later. \" width=\"720\" height=\"960\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Sacramento.jpg 720w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Sacramento-160x213.jpg 160w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Sacramento-240x320.jpg 240w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Sacramento-375x500.jpg 375w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Sacramento-520x693.jpg 520w\" sizes=\"(max-width: 720px) 100vw, 720px\">\u003cfigcaption class=\"wp-caption-text\">David Huntley testified in favor of California's \"Right to Try\" bill in April 2015. He died three months later. \u003ccite>(Courtesy of Lina Clark)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The FDA already offers a \u003ca href=\"http://www.fda.gov/NewsEvents/PublicHealthFocus/ExpandedAccessCompassionateUse/default.htm\" target=\"_blank\">process\u003c/a>, called “expanded access” or “compassionate use,” for some patients to obtain experimental drugs. But critics say it’s too slow and cumbersome, even though the FDA approves more than 99 percent of requests that come through that pipeline.\u003c/p>\n\u003cp>“It just takes so long, it’s inefficient, it’s ridiculous,” Calderon said of the FDA process. “I don’t understand.”\u003c/p>\n\u003cp>As the state laws proliferate, clinicians and medical ethicists are growing increasingly concerned about the potential safety and financial risks to patients.\u003c/p>\n\u003cp>“If we take the FDA out of it, how do we protect people from physicians or drug companies that will want to sell them things and will want to prey on their desperation?” asked \u003ca href=\"http://healthpolicy.ucsf.edu/people/r-adams-dudley-md-mba\" target=\"_blank\">Dr. R. Adams Dudley\u003c/a>, director of UCSF’s \u003ca href=\"http://healthvalue.ucsf.edu/\" target=\"_blank\">Center for Healthcare Value\u003c/a>.\u003c/p>\n\u003cp>Dudley says the FDA and the clinical trial process were put in place for a reason.\u003c/p>\n\u003cp>\"Have we somehow gotten better at managing snake oil salesmen now, than we were back when we decided we needed an FDA in the first place?\" Dudley said.\u003c/p>\n\u003cp>Under the new law, all that patients and doctors can really do is \u003cem>ask\u003c/em> for an experimental drug. Drug companies don’t have to give it to them, and insurance companies don’t have to pay for it.\u003c/p>\n\u003cp>Dudley fears that family members of a patient might exhaust their life savings trying a drug that hasn’t been proven to work -- and could even speed up death or increase end-of-life suffering.\u003c/p>\n\u003cp>That’s one reason the \u003ca href=\"http://www.nationalnursesunited.org/site/entry/california-nurses-association\" target=\"_blank\">California Nurses Association\u003c/a>, among other groups, strongly opposed the bill.\u003c/p>\n\u003cp>“It basically turns patients -- terminally-ill patients -- into guinea pigs,” said Don Nielsen, the CNA's director of government relations.\u003c/p>\n\u003cp>“There’s really no demonstrated need for this,” Nielsen said. “This so-called \"Right to Try\" movement is nothing more than boilerplate legislation promoted by the far-right Goldwater Institute.”\u003c/p>\n\u003cp>(While the Arizona-based Goldwater Institute has taken an active role in \u003ca href=\"http://goldwaterinstitute.org/en/work/topics/healthcare/right-to-try/right-try/\" target=\"_blank\">promoting\u003c/a> the laws, in California and other states, Calderon insists he came upon the issue independently, while researching physician-assisted suicide for California.)\u003c/p>\n\u003cp>It’s unclear how effective the state laws have been. There’s no data yet on how many patients have used the state laws, compared to the FDA’s expanded access process.\u003c/p>\n\u003cp>Dudley predicts the state-based Right to Try laws may eventually face a court challenge and be declared unconstitutional. That’s because federal law gives the power to regulate pharmaceuticals to the FDA, not the states.\u003c/p>\n\u003cp>But Clark thinks Congress might be open to amending that authority.\u003c/p>\n\u003cp>“It’s kind of parallel with what’s going on with medical marijuana,” Clark said. “It’s legal at the state level, but we still have a federal Drug Enforcement Agency to whom it is illegal. It’s not an ideal situation. It’s kind of similar to that. We ultimately need a federal law.”\u003c/p>\n\u003cp>A federal version of Right to Try was introduced in the Senate last year. In the meantime, a recently passed federal law addressing medical research, the \u003ca href=\"http://docs.house.gov/billsthisweek/20161128/CPRT-114-HPRT-RU00-SAHR34.pdf\" target=\"_blank\">21st Century Cures Act\u003c/a>, contains a \u003ca href=\"https://www.statnews.com/pharmalot/2016/11/28/21st-century-experimental-drugs/\" target=\"_blank\">provision\u003c/a> that requires drug companies to be more transparent about how they decide who gets access to experimental drugs and how long it will take.\u003c/p>\n\u003cfigure id=\"attachment_278364\" class=\"wp-caption alignnone\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-278364\" src=\"http://ww2.kqed.org/stateofhealth/wp-content/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-800x800.jpg\" alt='Lina Clark and her husband David Huntley on vacation in Croatia in 2014, before he succumbed to ALS. The disease made both of them activists for the \"right to try\" in California. ' width=\"800\" height=\"800\" srcset=\"https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-800x800.jpg 800w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-160x160.jpg 160w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-768x768.jpg 768w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing.jpg 960w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-240x240.jpg 240w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-375x375.jpg 375w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-520x520.jpg 520w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-32x32.jpg 32w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-50x50.jpg 50w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-64x64.jpg 64w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-96x96.jpg 96w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-128x128.jpg 128w, https://ww2.kqed.org/app/uploads/sites/27/2016/12/Right-to-Try-Huntley-Clark-Sailing-150x150.jpg 150w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Lina Clark and her husband David Huntley on vacation in Croatia in 2014, before he succumbed to ALS. The disease made both of them activists for the \"Right to Try\" in California. \u003ccite>(Courtesy of Lina Clark)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>\u003c/p>\n\u003cp>\u003cem>Editor's note: The original version of this article incorrectly stated the California \"Right To Try\" law allowed access to an experimental drug at any stage. The law actually only allows a patient to request a drug that has passed through Phase I of the FDA clinical process, when a candidate drug is tested for toxicity on otherwise healthy subjects.\u003cbr>\n\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>",
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"radiolab": {
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"info": "A two-time Peabody Award-winner, Radiolab is an investigation told through sounds and stories, and centered around one big idea. In the Radiolab world, information sounds like music and science and culture collide. Hosted by Jad Abumrad and Robert Krulwich, the show is designed for listeners who demand skepticism, but appreciate wonder. WNYC Studios is the producer of other leading podcasts including Freakonomics Radio, Death, Sex & Money, On the Media and many more.",
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"title": "Selected Shorts",
"info": "Spellbinding short stories by established and emerging writers take on a new life when they are performed by stars of the stage and screen.",
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"info": "The Snap Judgment radio show and podcast mixes real stories with killer beats to produce cinematic, dramatic radio. Snap's musical brand of storytelling dares listeners to see the world through the eyes of another. This is storytelling... with a BEAT!! Snap first aired on public radio stations nationwide in July 2010. Today, Snap Judgment airs on over 450 public radio stations and is brought to the airwaves by KQED & PRX.",
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