NPR Health Blog

Syndicate content Shots - Health News
NPR's online health program
Updated: 20 min 48 sec ago

Would You Tell The World You Have Schizophrenia On YouTube?

Wed, 01/27/2016 - 2:05pm

Rachel Star Withers says that video blogging about schizophrenia and depression has helped her manage the disorders.

Courtesy of Rachel Star

When she was 22, Rachel Star Withers uploaded a video to YouTube called "Normal: Living With Schizophrenia." It starts with her striding across her family's property in Fort Mill, S.C. She looks across the rolling grounds, unsmiling. Her eyes are narrow and grim.

She sits down in front of a deserted white cottage and starts sharing. "I see monsters. I see myself chopped up and bloody a lot. Sometimes I'll be walking, and the whole room will just tilt. Like this," she grasps the camera and jerks the frame crooked. She surfaces a fleeting grin. "Try and imagine walking."

She becomes serious again. "I'm making this because I don't want you to feel alone, whether you're struggling with any kind of mental illness or just struggling."

At the time, 2008, there were very few people who had done anything like this online. "As I got diagnosed [with schizophrenia], I started researching everything. The only stuff I could find was like every horror movie," she says. "I felt so alone for years."

She decided that schizophrenia was really not that scary. "I want people to find me and see a real person." Over the past eight years, she has made 53 videos documenting her journey with schizophrenia and depression, and her therapy. And she is not the only one. There are hundreds of videos online of people publicly sharing their experiences with mental illness.

In her early videos, Withers glowers. She tried to give off an aura of toughness befitting the daughter of a Hell's Angel biker. But there's also a sense that terror is a deep undercurrent in her life. "All right, let's go," she says in the video "Watch If You Forget," where she documents getting electroconvulsive therapy for depression. Then, in the next few seconds, "I'm about to start the electroshock therapy and, yeah, I'm pretty nervous."

YouTube

Things have changed a lot since then. Now, almost all her videos open with Withers flicking her black curls, arms raised with swagger: "Hey, what's up! I'm Rachel Star!"

That public sharing of mental illness might be making a huge impact on the way our society views these disorders, especially for those of us who are digital natives. Millennials tend to be more comfortable talking about mental health issues, according to a poll released Jan. 14 by the Anxiety and Depression Association of America, along with two national suicide prevention foundations.

When it came to seeing a mental health professional, for instance, 48 percent of survey respondents between the ages of 18 and 34 said that it was a sign of strength. About 35 percent of all prior generations felt the same way.

"Our young people are accepting that mental health problems exist, and they want help for it, and they are not looking at these things as something to be ashamed of," says Anne Marie Albano, a clinical psychologist at Columbia University who is on the board for the ADAA.

She thinks that social media and videos like Withers' have helped lower stigma around mental illnesses. "Young people take advantage of this," Albano says. "It gives the opportunity for people to tell their stories and post images. This allows them to feel more hope than prior generations."

// Require.js is on the page (new Seamus) if (typeof requirejs !== 'undefined') { // Create a local require.js namespace var require_mental_health_stigma_20160126 = requirejs.config({ context: 'mental-health-stigma-20160126', paths: { 'pym': 'http://apps.npr.org/dailygraphics/graphics/mental-health-stigma-20160126/js/lib/pym' }, shim: { 'pym': { exports: 'pym' } } }); // Load pym into locale namespace require_mental_health_stigma_20160126(['require', 'pym'], function (require, Pym) { // Create pym parent var pymParent = new Pym.Parent( 'responsive-embed-mental-health-stigma-20160126', 'http://apps.npr.org/dailygraphics/graphics/mental-health-stigma-20160126/child.html', {} ); // Unbind events when the page changes document.addEventListener('npr:pageUnload', function (e) { // Unbind *this* event once its run once e.target.removeEventListener(e.type, arguments.callee); // Pym versions with "remove" if (typeof pymParent.remove == 'function') { pymParent.remove(); // Pym version without "remove" } else { // Unbind pym events window.removeEventListener('message', pymParent._processMessage); window.removeEventListener('resize', pymParent._onResize); } // Explicitly unload pym library require_mental_health_stigma_20160126.undef('pym'); require_mental_health_stigma_20160126 = null; }) }); // Require.js is not on the page, but jQuery is (old Seamus) } else if (typeof $ !== 'undefined' && typeof $.getScript === 'function') { // Load pym $.getScript('http://apps.npr.org/dailygraphics/graphics/mental-health-stigma-20160126/js/lib/pym.js').done(function () { // Wait for page load $(function () { // Create pym parent var pymParent = new pym.Parent( 'responsive-embed-mental-health-stigma-20160126', 'http://apps.npr.org/dailygraphics/graphics/mental-health-stigma-20160126/child.html', {} ); }); }); // Neither require.js nor jQuery are on the page } else { console.error('Could not load mental-health-stigma-20160126! Neither require.js nor jQuery are on the page.'); }

There might be other reasons young people are less concerned about stigma surrounding mental illness. Perhaps as you age, your outlook becomes more pessimistic, says John Naslund, a Ph.D. candidate at the Dartmouth Institute for Health Policy and Clinical Practice who studies social media and mental health. He notes that the ADAA poll found that a higher percentage of older adults than young people didn't believe that something like suicide could be prevented. "Maybe they've been through this before and have had people close to them take their own lives."

He hopes things really are getting better. "It's very possible. That would be a very exciting change in the way society views mental illness," Naslund says. But the problem has not been solved. Even if information moves quickly, change is slow. "It's really important to acknowledge that people who have a serious mental disorder still face a lot of stigma," he says.

This being a Christian place, they decided I was possessed by demons.

When she was younger, Withers struggled with a lot of shame and humiliation over her disorders. "For so many years, I felt like a freak," she says. Part of that was the religious community she had joined. "Think militant Christian. Like a militaristic type," she says. When she was 17, she graduated from high school early to attend the former Teen Mania Ministries Honor Academy in Dallas. "I honestly thought that's what God wanted me to do."

At the same time, her mental condition was deteriorating. She says her schizophrenia was starting to emerge and transform into something unmanageable. The counselor at Honor Academy diagnosed her with depression and prescribed pills. They didn't help. Eventually she told them about her hallucinations. "This being a Christian place, they decided I was possessed by demons."

For three days, Withers fasted. Each morning, she met three of the school's spiritual advisers, and they spent the day performing an exorcism in a closed room. They read Bible verses, and Withers confessed to everything she could think of that might be construed as a sin — even watching demon-related TV shows like Buffy The Vampire Slayer.

At the end of the crucible, Withers was on the floor, exhausted. "I was young and here are these people who, you know, I'm told are close to God. I was like ... OK. It must be right," she says. "Surprise! It didn't work. I spent six more months there as an outcast."

Reducing this kind of stigma is a fundamental reason Withers continues making videos. She wants others to see those struggling with mental disorders with more compassion, and she wants people with a mental diagnosis to see themselves more positively.

YouTube

After she posted her first video, Withers says, "People just come out of the woodwork emailing me, messaging me. The friends I've had the longest time, even people I've never met in real life with schizophrenia and like disorders. We just started talking." She got invited to mental health forums and to mental health support groups on Facebook.

"Thank you for these videos. They really help me to better understand my sister," YouTube user Kathryn Hatzenbuhler posted under one video.

Whenever I'm posting on twitter, I'll put #schizophrenia and #schizophrenic.

These online communities are an important part of Withers' life now. "Whenever I'm posting on Twitter, I'll put #schizophrenia and #schizophrenic. I'm hoping to find other people who are having problems," she says.

Withers ended up making a coloring book for kids with schizophrenia, and she shares ways she has figured out to deal with her visions and voices.

Via webcam, she showed me two askew mirrors in her room that can be angled away from the viewer. "People with mental disorders don't do well with mirrors. I just start hallucinating," she says. "It's real hard putting on makeup, you have to imagine. Having the mirrors at an angle helps."

In one video, she talks about walking up to one of her hallucinations to touch it, and that alone took away some of the fear. "It's kind of something to help you get used to your hallucinations, so you know how to respond, because the voices are always horrible. The voices are never like, 'Oh my God, you look so good today.' "

YouTube

There's no hiding her disorder from anybody on Facebook, so people she knew in real life started finding out. It caused her pain at some jobs ("This one girl was like, 'Oh she's crazy. I'm not working with her.' "), but it also led some people to talk about their own or their family's experiences with mental disorder. "They'll be like, 'So ... I saw your post, Rachel. I had a question.' "

Researchers think there's a potential gold mine of mental health benefits in exchanging messages and encouragement online like this. "Social support is always the No. 1 variable that predicts a better prognosis and better care management of anyone's illness," Albano says.

It's a small leap from there to think that participating in mental health-focused communities on YouTube and Facebook might actually be making people healthier and preventing suicides. "That's probably absolutely correct," says Patrick Corrigan, a professor of psychology at the Illinois Institute of Technology. But scientists are only just now beginning to measure the effect social media might have on clinical outcomes. "It's quite a new area of thinking, online peer-to-peer support for mental illness," Naslund says.

But there's an obvious downside to being public on social media about mental health problems. "Say I have a network of friends and I have a breakdown one day. It will spread through social media, maybe in negative ways," says Michael Lindsey, a professor of social work at New York University. That could be through someone's real social groups, like at work or school, or it could be anonymous, via Internet trolls. For those already depressed, anxious or paranoid, cruel comments and messages could have a terrible impact.

You're able to pull yourself out in a way to help someone else.

But in Naslund's research, he says that problems with online attacks have been extraordinarily rare. "If someone did post a derogatory comment, seemed a little harmful, other people would come to the defense and say, 'Don't listen to that,' " he says. "[Social media are] way more supportive than we imagined."

According to Naslund, the benefits seem to vastly outweigh the harms. "That's clear in the literature," he says.

And Withers agrees. She doesn't think that people with mental health problems usually go on social media and spiral out of control even more. "I'm sure it happens somewhere on some area of the Internet," she says. "But I think usually when I'm feeling depressed and stuff, but then I see someone else thinking of hurting themselves, the opposite kicks in. It's like, no. You have so much to live for. You're able to pull yourself out in a way to help someone else."

When Withers does get trolls, she blocks them. "Anything remotely violent towards me gets blocked," she says. "Like — I'm not going to respond to that. Don't call me that word."

Still, she cautions others to think carefully before coming out to the world about their mental illness. It can be dangerous, she admits. She says she gets phone stalkers and death threats. But she is still glad that she did it. It's uncomfortable for her to think what might have happened if she never went online about her depression and schizophrenia. "I see myself being a lot more closed off," she says. "I hope I would have found other people's videos."

Withers attributes a lot of her transformation to electroconvulsive therapy. She says it knocked out a lot of her deep depression. And Withers thinks sharing on the Internet has also helped. "It helps me to vocalize it and put it all out there," she says, and it makes her feel like she is less "broken and sick" when other users empathize with her online.

Rachel Star YouTube

Recently, she posted a video to YouTube called "There Will Be Beautiful Days." It's short, reaching just past a minute long. Withers smiles and says she knows things are hard now. Maybe harder than they've ever been. But it's going to be OK. And at some point, you'll have some good days. Maybe even just one great day, but it'll be enough. It will make life worth fighting for.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

Teaching Parenting Skills At Doctor Visits Helps Children's Behavior

Wed, 01/27/2016 - 12:50pm

As researchers have come to understand how poverty and its stresses influence children's brain development, they've begun untangling how that can lead to increased behavior problems and learning difficulties for disadvantaged kids.

Rather than trying to treat those problems, NYU child development specialists Adriana Weisleder and Alan Mendelsohn want to head them off.

They say they've found a way: Working with low-income parents when they bring babies and young children to the pediatrician. They've been able to reduce key obstacles to learning like hyperactivity and difficulty paying attention, according to research published Wednesday in the journal Pediatrics.

The researchers recruited mothers with newborns to participate in the study and divided them into three groups. One group received standard pediatric care, which includes some basic coaching on reading to kids. The second went home with books, toys and informational pamphlets, and the third worked with a trained child development professional for about 30 minutes before or after each checkup. The specialist filmed each mother and child reading or playing together for a few minutes, talked to the mother about the positive things she did with her child and sent her home with the video.

At 3 years old, 50 percent fewer children in the video interaction group who were most at risk showed signs of hyperactivity compared with those who got standard pediatric care. The results were positive, though less remarkable, for the video group as a whole.

Improving a child's ability to focus, regulate behavior and cooperate with other kids can help a child learn. "If [children are] controlling their behavior, not overreacting and paying attention, they will be taking in more information from learning activities," says early childhood expert Susan Landry, director of the Children's Learning Institute, who wasn't involved in the study. "All those things help in the classroom to be a better student."

The results show that a relatively cheap form of intervention works, the researchers say, and could be used to reach a big swath of the population, including families who are often hard to reach because parents work multiple jobs or phones get disconnected.

By using pediatric checkups as a way to engage parents, the researchers say they could reach every child without burdening parents with additional transportation or logistical demands. "We're leveraging the relationship they already have with the pediatric clinic," Weisleder says.

While home visits to provide this sort of one-on-one behavioral training can cost between $1,500 and $10,000 per child per year (models vary widely), the video program costs around $200. David Willis, director of the federal Health Resources and Services Administration's Early Childhood Home Visiting Program, notes that the home visit program is far more intensive than the NYU video method, with families getting between 25 and 30 visits per year. Each lasts at least an hour.

"The families we serve are some of the most challenged families in the country," Willis says. Home visits are an important resource for them, but he estimates the program reaches only 1 to 3 percent of families who could benefit from it. "To simultaneously have this [video interaction] program that's likewise focused on promoting positive parenting and brain development in the youngest families is really significant," he says.

Landry thinks the video intervention could be embedded into almost any type of pediatric setting for very little cost. "That's something all of us have been searching for, "she says. Her team at the University of Texas Health Science Center at Houston is working to make home visits by child development specialists more affordable by giving parents iPads so they can work remotely with experts.

The findings don't just apply to disadvantaged families. As a pediatrician, the first advice Mendelsohn gives families when kids have behavior problems is to think not about discipline but rather positive steps.

"Can you start to pay attention to your child when your child is being good?" he asks. Negative interactions can turn into a cascade, he says, in which parents feel worse about themselves, which influences kids negatively, which ultimately makes things even harder for parents. "Kids misbehave because it's their job," he says. "It's our job to be able to help them learn and regulate their behavior."

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

Do-It-Yourselfers Face Penalties Over Their Cut-Rate Health Insurance

Wed, 01/27/2016 - 11:46am

Last fall, Shalonda Brown decided she'd had it with paying nearly $1,000 a month for family health, dental and vision plans through her job at an independent lab in Dallas.

Casting about for an alternative, she checked out individual family plans on HealthCare.gov. No dice. The family's income was too high to qualify for subsidies and comparable coverage wouldn't be any cheaper.

So Brown instead cobbled together three different policies that each provide limited coverage for her, her husband and 2-year-old daughter: a short-term plan with a $10,000 deductible that provides up to $1 million in coverage for just under a year; a critical illness plan that pays a $20,000 lump sum if one of them is diagnosed with invasive cancer, heart attack or stroke; and a dental plan that provides $1,000 in coverage. The total monthly tab: $390.

"I feel like it's just giving me everything I need as of right now," said Brown, 31. "Me and my family, knock on wood, there's nothing urgent or major to deal with now."

But there's a catch. Under the health law, most people are required to have insurance that meets minimum standards or pay a fine. Limited benefit policies such as short-term, critical illness, accident, dental and vision plans don't qualify.

In 2016, the penalty is $695 per adult and $347.50 per child, or 2.5 percent of household income, whichever is greater.

Brown knows she'll face a penalty if her family doesn't have comprehensive coverage this year, but she's willing to pay the fine. "When I look at what I'm saving having a short- term plan versus regular insurance, it'll balance out," she said.

Faced with sky-high premiums and high deductibles for traditional plans, it's not surprising that some people are looking at other options.

"They may be making the best decision they can for themselves given their financial and health situation," said Sabrina Corlette, research professor at Georgetown University's Center on Health Insurance Reforms. "But it's a roll of the dice, and if something bad happens, they could find themselves on the hook for a very big bill."

Under the health law, regular health plans are prohibited from imposing lifetime or annual limits on coverage, or from turning people down because they're sick. Short-term policies — which generally impose dollar limits on coverage, don't cover treatment for preexisting conditions and may refuse to renew a policy if someone gets sick — don't meet those standards.

But many people are taking an interest in the plans nevertheless. In 2014, when the provisions of the health law took effect, the number of people applying for short-term plans rose 130 percent, to 147,383, at online health insurance vendor eHealth.

Sales of critical illness and accident policies, which generally pay a lump sum if someone has a qualifying event such as a car accident or cancer diagnosis, are also on the rise. Sales of critical illness policies on the individual market grew to $311 million in 2014, a 24 percent increase over five years, according to financial services research company LIMRA. Nongroup accident policy sales reached $430 million in 2014, a 13 percent rise over five years.

As consumer interest in limited benefit plans has grown, some carriers are bundling critical illness and accident insurance policies together, or offering a single plan that provides coverage for both, says Nate Purpura, vice president of consumer affairs at eHealth.

The typical purchaser of accident or critical illness coverage at eHealth is a self-employed person who already has a comprehensive insurance plan and wants some extra financial protection, says Purpura. It's less common for people to cobble together different limited plans to rely on as a replacement for regular insurance.

"Short-term insurance is designed for a short-term gap, and accident and critical illness plans are not designed to replace major medical," Purpura said.

With an average lump sum payout of $31,000 for an individual market critical illness plan, according to insurer Gen Re, the policies won't come close to covering treatment for a serious illness.

"We just want to be sure that people understand what they're buying and understand the limitations of these plans," says Anna Howard, a policy principal at the American Cancer Society Cancer Action Network.

For her part, Shalonda Brown hopes to get regular insurance again soon. Her husband has applied for a government job with comprehensive health insurance that, she hopes, would be more affordable than her employer plan.

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Michelle Andrews is on Twitter:@mandrews110.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

Big Zika Virus Outbreak Unlikely In The U.S., Officials Say

Tue, 01/26/2016 - 6:09pm
Listen to the Story 3:13
  • Playlist
  • Download
  • Embed Embed" /> Close embed overlay <iframe src="http://www.npr.org/player/embed/464459350/464469870" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
  • Transcript

The Aedes aegypti mosquito is one of two types thought to be capable of carrying and transmitting the Zika virus.

Nelson Almeida/AFP/Getty Images

The outbreak of Zika virus in Brazil and other countries has raised concern that the pathogen could start spreading widely in the United States, as well. But federal health officials and other infectious disease specialists say so far that seems unlikely.

"Based on what we know right now, we don't think that widespread transmission in the United States is likely," says Dr. Beth Bell, director of the National Center for Emerging and Zoonotic Infectious Diseases at the Centers for Disease Control and Prevention.

There are several reasons for Bell's cautious optimism that isolated cases that show up in the U.S. could be contained. The first is that the two species of mosquitoes that could be capable of transmitting the virus, Aedes aegypti and Aedes albopictus, live mostly in the southern, more tropical parts of the U.S. That makes it likely that transmission would be limited primarily to these areas. And for various reasons, the chain of events and conditions the virus needs in order to spread is more easily disrupted in the U.S. than elsewhere.

For example, many people in the U.S. have air conditioning in the summer, so aren't as likely to leave windows open at the times of day when mosquitoes are especially active. Open windows also tend to have screens. And many counties and other municipalities spray to kill mosquitoes and are vigilant in trying to eliminate pools of standing water where the insects can breed.

"These are all conditions that make it less likely for ongoing, large-scale spread to occur," Bell says.

Still, travelers who have gotten infected with the Zika virus in other countries have already arrived in the U.S. and more are expected, raising the possibility that the virus could spread a bit beyond those cases, Bell says.

"There certainly is the possibility for transmission," Bell says. And since the virus is new to the U.S., most people have no immunity to it.

But even if that occurs, Bell and the CDC predict that any outbreaks would likely be very small. That's been the case so far with two similar viruses that have spread rapidly throughout Latin America and the Caribbean in recent years: dengue and chikungunya.

Additional Information: Related NPR Stories Goats and Soda Zika Virus Confirmed In Texas: Here's A Primer On The Disease Global Health Zika Virus Will Spread Through The Americas, WHO Says Goats and Soda Genetically Modified Mosquitoes Join The Fight To Stop Zika Virus

"What we saw with chikungunya, and what we've seen with dengue," Bell says, "is some small situations with localized spread in southern parts of the United States, but with very limited transmission."

Bell says she doubts Zika would fan out across the U.S. in the way that West Nile virus has spread. For one thing, West Nile is primarily transmitted by a different type of mosquito — one that is found throughout the country. Also, birds can be infected with West Nile and carry it from place to place. That doesn't happen with Zika virus, which has no known bird or animal reservoir.

Dr. Anthony Fauci, who heads the National Institutes of Allergy and Infectious Disease, says he agrees that it's unlikely that the U.S. will see a widespread outbreak of Zika.

"If you look at historically what we've seen, I think we can say that it's a remote possibility and unlikely to happen," Fauci says. Nevertheless, Bell acknowledged that experts can " 'never say never,' " and Fauci agrees anything is possible.

There are still many uncertainties, including exactly what Zika is doing to pregnant women and their babies, what other complications the virus may cause and why it has suddenly taken off in parts of Brazil and elsewhere.

Those unknowns mean "there is a risk" to some people, says Dr. Albert Ko of the Yale School of Public Health, who's been studying the outbreak in Brazil. "We don't know how big that risk is. It seems low. But we know not that much about this disease at this moment."

Ko and other experts say they are rushing to learn more about the Zika virus and are on the lookout for disturbing surprises.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

How Meditation, Placebos And Virtual Reality Help Power 'Mind Over Body'

Tue, 01/26/2016 - 1:22pm
Listen to the Story 37:21
  • Playlist
  • Download
  • Embed Embed" /> Close embed overlay <iframe src="http://www.npr.org/player/embed/464372009/464458795" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
  • Transcript

Science writer Jo Marchant investigated the healing power of the mind for her new book, Cure.

Jutta Kuss/Getty Images

While researching the book Cure, science writer Jo Marchant wanted to understand how distraction could be used to nullify pain, so she participated in a virtual reality experiment.

During the first part of the experiment, Marchant sat, without distraction, with her foot in a box of unbearably hot water. "It felt like a very intense burning pain on my foot when I just experienced it on its own," Marchant tells Fresh Air's Terry Gross.

But then Marchant put on noise-canceling headphones and began to play a snow-and-ice-themed immersive video game that had been developed specifically for burn patients. This time, when the researcher applied the same burning pain to her foot, she barely noticed it.

Jo Marchant holds a doctorate in genetics and medical microbiology and has written for New Scientist, Nature and Smithsonian.

Garry Simpson/Crown

"The researchers explained it as our brains only have a certain capacity for attention," Marchant says. "If you've got something that's really commanding your attention, there's less attention left over for experiencing the pain."

During the course of her research, Marchant also investigated the science behind the placebo effect, hypnosis, meditation, prayer and conditioning. She says that the healing power of the brain could offer a powerful complement to modern medicine. "That's a whole different approach to pain that I think tells us that drugs aren't the only answer," she says.

Interview Highlights

On harnessing the placebo effect to feel better

Additional Information: Cure

A Journey into the Science of Mind Over Body

by Jo Marchant

Hardcover, 300 pages |

purchase Purchase Featured Book
Title
Cure
Subtitle
A Journey into the Science of Mind Over Body
Author
Jo Marchant

Your purchase helps support NPR Programming. How?

One thing that people often don't realize about the placebo effect is there isn't just one placebo effect. There are many, depending on what we think a treatment is going to do for us. So, for example, if you take a fake painkiller, that actually reduces pain-related activity in the brain and the spinal cord and it causes the release of natural painkillers in the brain called endorphins. And these are actually the painkillers that opioid painkillers are designed to mimic, so it's working through the same biochemical pathway that a painkiller would work through. But if a patient with Parkinson's takes a placebo that they think is their Parkinson's drug, they get a flood of dopamine in the brain, which is exactly what you would see with the real drug.

Even with altitude sickness, for example, if somebody at altitude takes fake oxygen, you see a reduction in ... prostaglandins. ... These actually work to dilate blood vessels and they cause many of the symptoms of altitude sickness.

So what you see in all these different conditions is that taking a placebo, or, to be more accurate about it, our response to that placebo, can cause biological changes in the brain that actually ease our symptoms, and that's not something that's imaginary; that's something that's underpinned by these biological changes that are very similar to the biological changes you get when we take drugs.

On possible explanations for why the placebo effect sometimes works

Some of it seems to have to do with stress and anxiety — if we feel that we are in danger or under threat, the brain raises its sensitivity to symptoms like pain. ... Whereas, on the other hand, if we feel that we are safe and cared for and things are going to get better soon, we can kind of relax, we don't need to be so alert to these symptoms. So that's one thing that might be at play.

There are also physiological mechanisms for example, conditioning. ... If listeners are familiar with Pavlov's dogs, so this is the idea that a physiologist called Ivan Pavlov conditions dogs so that whenever he gave them their food he would make a noise, like ring a bell for example, and eventually they came to associate the bell with their food and they would salivate just to the sound of the bell. He didn't need the food anymore. We can all be conditioned to have different physiological responses to a stimulus like that, and that works not just for salivation, but for things like immune responses. So, for example, if you take a pill that suppresses your immune system, later on, if you take a similar looking placebo pill, even if there's no actual active drug in there, your body will mimic that same response. Your body has learned that response and that just happens automatically; it doesn't matter what you believe about the pill.

On making sense of placebo responses

I don't think we should be giving people fake pills. I think, first of all, there is some evidence that honest placebos still work, so there are studies in various conditions, for example — irritable bowel syndrome, headaches, hyperactivity disorder — where patients have received placebos but they knew they were placebos and still got a benefit from that. And that's probably all down to things like just being in a trial, the feeling that you're being helped can have those effects on the brain. So you don't necessarily have to lie to people, but beyond that, I think what we need to do is try and understand what are the active ingredients of placebo responses — whether that's expectation, which is then influenced by all different things, such as your previous experiences with treatment, what you're told about a treatment, how sympathetic your physician is. There's all sorts of things that are feeding into how you'll respond to that treatment. So I think we need to try and understand those things and think how we can incorporate those elements into medical care routinely, rather than, for example, relying on fake pills.

On how meditation and mindfulness can affect health

The basic idea [of mindful meditation] is that you try to focus on the present moment rather than worrying about the past or the future. ... There have been hundreds of studies on mindfulness now, and there's very good evidence that it reduces stress and anxiety, and that it reduces symptoms such as chronic pain and fatigue. So that's very well shown now in the analysis of lots of different studies, and that's in healthy people but also in people with depression or people with serious illness. What there's less research on is whether that feeds through into benefits for the immune system and sort of more physical health benefits, if you like.

There is some evidence suggesting that mindfulness meditation can make us more resistant to infection and that's everything from winter colds to slowing the progression of HIV and that it gives people a better response, for example, than flu vaccine. There was another study suggesting that people with psoriasis responded better to their medication when they also had mindfulness training. ... But the studies so far are quite small, so it would be great to see more research on that.

On why slow, measured breathing helps with stress

With a stress response, the brain and the body are influencing each other in both directions, so if we see a danger then that's going to make us feel stressed and one of the follow-ons from that is that our breathing is going to speed up. If you were to speed up your breathing on your own, you'd probably start to feel a bit more aroused and on edge. And, equally, if you calm the breathing down, you're kind of forcing your body into a more relaxed state and you will then experience probably fewer negative thoughts as a result. When we're stressed, our brains almost come up with negative thoughts to try and explain why we're stressed, if you like, if you're kind of anxious or worried about something, all sorts of negative thoughts are going to pop into your head, but if you can just calm that down, then that's going to have a beneficial effect on your mental state as well.

On how how stress can rewire the brain — and creates more stress

Your brain reflects the way that you think throughout your life. You kind of shape it by your thoughts and your behaviors. If you play violin for eight hours a day, then the parts of the brain responsible for helping you to play the violin will get larger. If you're thinking stressful thoughts for the whole day then those parts of the brain are going to get larger and other parts of the brain will deteriorate. It's kind of an irony because then the very brain circuits that we would need to try and counter that are no longer working as well as they should, so that's why something like meditation can be helpful because just simply saying, "Oh, I'm going to change how I think now. I'm not going to be as stressed now," doesn't really work; you have to change your brain over a long period of time.

Read an excerpt of Cure

Copyright 2016 Fresh Air. To see more, visit Fresh Air.
Categories: NPR Blogs

Depression Screening Recommended For All Pregnant Women, New Mothers

Tue, 01/26/2016 - 11:06am

Untreated depression can harm the health of mothers and their children.

iStockphoto

Pregnant women and new mothers need more attention when it comes to screening for depression, according to recommendations issued Tuesday by the U.S. Preventive Services Task Force.

That came as part of the panel's recommendation that all adults should be screened, in a situation where they can be provided treatment or get a referral if they are clinically depressed.

The announcement follows similar recommendations in 2002 and 2009. What's new this time is the special shout-out for pregnant women and new moms. They need special recognition, the task force says, because of evidence showing that they can be accurately diagnosed and successfully treated, and because untreated depression harms not only the mother, but her child as well.

Depression is the leading cause of disease-related disability in women around the world. Nine percent of pregnant women and 10 percent of new moms will go through a major depressive episode, according to evidence cited by the task force. And studies have shown that babies and toddlers with depressed moms are subject to lots of problems. They may be more difficult to console, be less likely to interact or have more sleeping problems.

The independent panel's recommendations are influential — many health insurers and health systems follow their suggestions. But the announcements often come with controversy. Recent and recurring recommendations against automatic annual mammograms for women in their 40s have generated multiple headlines.

But concerns among mental health researchers who got an early glimpse of the advice about testing for depression have been mild — mostly questions about the best depression screening test to use and the importance of emphasizing more research on treatments.

There's no argument about the task force's call for recognizing the needs of pregnant women and new moms. "Historically, depression in these populations has been underrecognized and undertreated," says Evette Ludman, a clinical psychologist who studies behavioral science for Group Health Research Institute in Seattle.

Most important, she says, is the recommendation that there be access to some sort of effective care when someone is diagnosed.

Heidi Koss got no screening with the birth of her first child 20 years ago, not even an open ear when she mentioned symptoms of depression to her obstetrician at her six-week checkup. "He said 'Oh, this is typical of a lot of moms; perhaps you should get out more, maybe buy a new dress.' "

"It just added to a sense of helplessness, hopelessness and isolation," she says now. In 2011, she told NPR about several attempts to commit suicide before finally finding a sympathetic mental health counselor about a year after her first child was born.

Her experience with postpartum depression inspired Koss to get a degree in counseling. She now practices in Kirkland, Wash., and is the Washington state coordinator of a nonprofit education group, Postpartum Support International.

"Pregnancy is not from the neck down," she says, pointing to studies that show that more women suffer from mental illness during pregnancy and after pregnancy than develop gestational diabetes or pre-eclampsia, or go into preterm labor.

And she singles out a small British study done in the late 1990s that claimed that psychiatric disorders, and suicide in particular, were the leading cause of maternal death.

The task force report notes that one of the biggest challenges is treatment.

"Because hopelessness and inertia are often part and parcel of depression, it can be challenging for persons living with depression to keep at it until finding the treatment that is right for them," says Ludman of Group Health Research Institute. The task force notes that talk therapy (specifically a kind called cognitive behavioral therapy), drug therapy or a combination of medication and therapy may be necessary.

But the group backs off on recommending drug treatment for pregnant women with depression because of the possibility of problems associated with certain drugs called SSRIs. Some studies have shown a small risk of increased problems that include miscarriage and preterm birth. Instead, the suggestion for pregnant or breastfeeding women is for cognitive behavioral therapy or some form of counseling.

The task force's recommendations for pre- and post-term moms appear in the current issue of JAMA, the journal of the American Medical Association. They track with advice from other groups, including the American Academy of Family Physicians, the American Academy of Pediatrics and the American College of Obstetricians and Gynecologists.

Legislation introduced in Congress last July would authorize the federal government to fund screening and treatment for pregnant women or women who have given birth within the past year.

Joanne Silberner, a former health policy correspondent for NPR, is an artist in residence at the University of Washington's department of communication.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

A Judge's Guidance Makes Jurors Suspicious Of Any Eyewitness

Tue, 01/26/2016 - 5:04am
Listen to the Story 3:51
  • Playlist
  • Download
  • Embed Embed" /> Close embed overlay <iframe src="http://www.npr.org/player/embed/464300484/464400052" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
  • Transcript
Ikon Images/Corbis

The state of New Jersey has been trying to help jurors better assess the reliability of eyewitness testimony, but a recent study suggests that the effort may be having unintended consequences.

That's because a new set of instructions read to jurors by a judge seems to make them skeptical of all eyewitness testimony — even testimony that should be considered reasonably reliable.

Back in 2012, New Jersey's Supreme Court did something groundbreaking. It said that in cases that involve eyewitness testimony, judges must give jurors a special set of instructions. The instructions are basically a tutorial on what scientific research has learned about eyewitness testimony and the factors that can make it more dependable or less so.

"The hope with this was that jurors would then be able to tell what eyewitness testimony was trustworthy, what sort wasn't, and at the end of the day it would lead to better decisions, better court outcomes, better justice," says psychologist David Yokum.

Yokum was a graduate student at the University of Arizona, doing research on decision-making, when he and two colleagues, Athan Papailiou and Christopher Robertson, decided to test the effect of these new jury instructions, using videos of a mock trial that they showed to volunteers.

The fictional trial involved a robbery and murder at a convenience store. Actors played all the roles, including an eyewitness. And the researchers made two versions of this trial that differed only in the quality of the eyewitness testimony.

One had testimony that would be considered strong, according to the New Jersey instructions. The other had eyewitness testimony that was much more sketchy. "Imagine a best- and a worst-case scenario," explains Yokum. "We deliberately designed the video that way."

For example, police departments frequently ask eyewitnesses to identify a suspect using a photo lineup. The New Jersey instructions say it is best if the photos are shown to the witness by a police officer who doesn't know which one is the suspect.

"The concern there is that if an officer knows who is in the photo lineup, they might accidentally give some sort of hint to the person about who it is," says Yokum.

So, in their video with the strong eyewitness testimony, the officer didn't know who was who. But in the video with the weaker testimony, he did. There were other differences as well, such as the number of photos in the lineup.

After watching one of these videos, volunteer jurors either did or did not hear the long New Jersey instructions. And then the juror had to decide. Guilty as charged?

"We found that the instruction had an effect," says Yokum. People who heard about the science of eyewitness testimony were much less likely to convict the defendant.

That was true regardless of whether the eyewitness testimony was high-quality or low-quality, says Yokum, suggesting that the instructions simply made the jurors suspicious of all such testimony.

The researchers recently published their research in the journal PLOS ONE.

"Whether this is a good or bad thing relative to not having the New Jersey instruction, I think, is kind of an open question," Yokum notes.

Alan Zegas, a criminal defense attorney who handled one of the cases that led to the New Jersey instructions, thinks the finding is definitely a good thing.

"Our criminal justice system, our Constitution, has at its foundation the notion that it is better to let a thousand guilty people go free than to convict an innocent person," says Zegas.

Just look at all the people who have been identified by eyewitnesses and later exonerated through DNA testing, he says, adding that "there should be skepticism of eyewitness testimony."

It's impossible to know what the real-world effect of these instructions has been so far, Zegas says. After all, most cases involve various kinds of evidence, not just identification from an eyewitness. But for those rare cases that really do hinge on eyewitness testimony, he thinks the New Jersey instructions could make a huge difference.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

Journal Editors To Researchers: Show Everyone Your Clinical Data

Tue, 01/26/2016 - 3:59am
Listen to the Story 3:39
  • Playlist
  • Download
  • Embed Embed" /> Close embed overlay <iframe src="http://www.npr.org/player/embed/464010931/464400058" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
  • Transcript
Jamie Jones/Getty Images/Ikon Images

Medical editors don't usually attract much attention. They perform their daily duties evaluating submissions and producing articles that, on good days, influence practice and policy.

But last Wednesday, the editors of the leading medical journals around the world made a proposal that could change medical science forever. They said that researchers would have to publicly share the data gathered in their clinical studies as a condition of publishing the results in the journals. This idea is now out for public comment.

As it stands now, medical scientists can publish their findings without ever making available the data upon which their conclusions were based.

Only some of the top journals, such as The BMJ, have tried to make data sharing a condition of publication. But authors who didn't want to comply could just go elsewhere.

Think about it. The scientists who generate the data, with the participation of the people being studied and often with public funding, control it and most often don't share. By holding the data tight, researchers who ran a study are the only ones who can conduct additional analysis and studies.

If the proposed change is adopted, as I hope it will be, it would make sharing more compelling.

Inaccessible data is a problem rife throughout medical science. Industry traditionally held its data close — but so did academics.

These researchers have felt that they deserved the right to future papers for all their hard work gathering the original data. And maybe they didn't want others examining their work.

But this practice shields data from scrutiny. It forgoes an opportunity to crowdsource knowledge from scientists who weren't associated with the original study. It also violates the sensible practice of showing your work, not just the presumed answer.

Some skeptics contend that those who pore over data generated elsewhere are nothing more than "research parasites." But that disparaging term neglects the key role that independent scientists can play in bringing new insights and also in validating the quality of the data that were collected. Access is also central to the scientific method and the idea of replication to establish the truth.

The editors who made the proposal sought to be sensitive to the rights of researchers, funders and participants. But their intent is clear: It's time to share.

The past culture has impeded science. For example, many times in my career as a heart disease researcher, I respectfully requested access to clinical trial data held by others. The response was no — regardless of the merit of the request — and most often from other academics. It is a behavior that would be hard to imagine in other fields, like physics or astronomy.

The data from clinical trials have the potential to provide additional knowledge that often goes untapped.

There were times my research group was able to gain access to data through the National Heart, Lung and Blood Institute, which promotes sharing of trials it funds, or through litigation. We uncovered insights that weren't in the original articles. Our work produced papers that found their way into the New England Journal of Medicine and JAMA, the Journal of the American Medical Association. The findings have since been cited by thousands of other papers, incorporated in treatment guidelines for doctors and patients. In several cases our results upended the original conclusions.

Others have also used trial data to replicate and extend findings from the initial studies and made critically important contributions.

In recent years the momentum for open science has grown rapidly. This action by the editors follows directly from guidance in 2015 from the National Academy of Medicine (formerly the Institute of Medicine), a body of the nation's top medical experts, that said clearly it is time for the culture of medical research to change.

Companies such as GlaxoSmithKline, Johnson & Johnson and Medtronic have led the way in sharing their trial data. Our group at the Yale Center for Outcomes Research and Evaluation started the Yale Open Data Access Project to promote data sharing and was an early advocate for open science. We are showing the feasibility of establishing partnerships with industry and acting as a trusted intermediary. Visit the site, and you can see a variety of trials from Johnson & Johnson that are available to scientists around the world.

With sharing, the sky hasn't fallen and worthwhile independent projects that could not have been done otherwise are proceeding. Many academics and companies are lagging, however. As a result, the data from a large number of trials remain off-limits.

Amid the progress, there has been a lack of consequences for not sharing. Even as the benefits from sharing are manifold, to be honest, it's easier not to share. Why expose your data to others? Why compromise your ability to publish more at your own pace? Why risk the possibility that someone could find an error? Why let others benefit from your hard work? Why spend the money to do it?

The absence of an incentive to share seems about to change. The proposal by the medical editors outlines an approach that would require: a data-sharing policy when the study is started; a commitment to share within six months of publication; and that those who use the data acknowledge those who produced it. The data should be down to the level of the individual patient (identifying information will be removed) rather than just summary data, an important detail that will allow rigorous science to proceed.

Among the first things we learn in school are to share and to show our work. This lesson has been lost on medicine for many years. The medical editors are reminding us that we scientists have a principal responsibility to society and to those who agreed to participate in our studies.

There are many details to resolve. How will sharing work? Who will pay for it? How will the researchers who produced the work get credit in the subsequent analyses? All good and difficult questions, but it is high time to find solutions.

For now, this proposal is out for public comment. It is likely that mostly scientists will weigh in on how the change would affect their work. It would be great, in my view, if the general public participated too. Do people want to see scientific data exposed to the light, available to advance knowledge for generations? The public stands to benefit the most. I hope that voices other than those of my colleagues will be heard.

Harlan Krumholz is a cardiologist and the Harold H. Hines Jr. Professor of Medicine at Yale School of Medicine. He directs the Yale-New Haven Hospital Center for Outcomes Research and Evaluation and is a co-director of the Robert Wood Johnson Foundation Clinical Scholars Program. To comment on the proposal described above, you can go to www.icmje.org.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

Insurers Hire Social Workers To Tackle The Opioid Epidemic

Mon, 01/25/2016 - 2:02pm
Listen to the Story 4:14
  • Playlist
  • Download
  • Embed Embed" /> Close embed overlay <iframe src="http://www.npr.org/player/embed/463870922/464338404" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
  • Transcript

A pharmacist counts pain pills. In an effort to curb the abuse of Oxycontin, Vicodin and other opioid painkillers, some health plans in Massachusetts now limit a patient's initial prescription to a 15-day supply, and plan to halve that number in February.

Gabe Souza/Getty Images

For many people struggling with opioid use, a key to success in recovery is having support. Some are getting that support from an unlikely place: their health insurer.

Amanda Jean Andrade, who lives west of Boston in a halfway house for addiction recovery, has been drug- and alcohol-free since October. It's the longest she's been off such substances in a decade. She gives a lot of the credit for that to her case manager, Will — who works for her insurance company.

"Having Will is the best thing in the world for me," Andrade says. "Because if I have the slightest issue with anything to do with my insurance that includes, like, prescriptions — even when I had a court issue — I know that I can call him."

Andrade's insurer is CeltiCare Health Plan, one of several health insurance companies in Massachusetts taking aggressive new steps to deal with the growing opioid epidemic. CeltiCare has about 50,000 members in the state, and mostly manages care for patients on Medicaid.

Insurers typically cover some inpatient substance use treatment and detox, says CeltiCare's president and CEO Jay Gonzalez, but those are only short-term solutions. After a patient is discharged, relapse — and readmission — are likely without follow-up support.

That's why CeltiCare assigns social workers to some of the people it insures.

"This is the biggest potential solution to this problem, I think, because at the end of the day we have to find the members who are or could be in trouble, and we need them to be invested in addressing their issues," Gonzalez says.

For CeltiCare, the costs related to the opioid epidemic are huge: Nearly a quarter of its hospital admissions are related to substance use, Gonzalez says. The insurer spent more than 10 percent of its budget last year on Suboxone, a medication to treat addiction to narcotics. That's more than it spent on any other drug.

Gonzalez believes that investing in the extra attention to patients like Andrade will eventually pay off, by helping them stay sober for good.

"At the end of the day, we think it's going to cost a lot less, Gonzalez says. "They're going to be healthier; they're not going to be showing up in the emergency room. We have people who show up in the emergency room 50 to 100 times a year. That's very expensive, and it's not good for the member."

CeltiCare is also training some of these members and their families in how to use Narcan, the drug that reverses an opioid overdose. And the firm is putting tighter limits on the initial prescription of opioid painkillers it permits for each patient.

Right now patients initially can be prescribed no more than a 15-day supply of the pain pills; CeltiCare plans to reduce that to a seven-day supply as of February. (Prescribing doctors will be permitted, of course, to renew the prescription as they see fit, when pain warrants it.)

CeltiCare isn't the only health insurer looking for new ways to deal with the opioid problem in Massachusetts. For the past three years, the state's largest insurance company, Blue Cross Blue Shield of Massachusetts, also has been limiting the supply of opioids it allows patients in an initial prescription.

Dr. Tony Dodek, associate chief medical officer for the company, says about 11,000 of the insurer's more than 2 million members were treated for a substance use problem in the past year. Federal numbers show that most misused controlled substances originate as legal prescriptions, so he sees limiting prescriptions as one simple and straightforward way to deal with the problem.

"We decreased the number of doses in circulation — when you compare the three-year period after implementation to the prior period — by over 21 million doses," Dodek says.

What's not so easy is finding ways to keep patients out of the hospital. Between 1993 and 2012, the rate of inpatient hospital stays related to opioid use went up 150 percent across the country, according to data from the Association of Community Affiliated Plans, a group of 60 not-for-profit health plans in two-dozen states.

In response, several of the association's members across the country are now taking steps that include screening those they insure for substance abuse, using social workers to help keep them in treatment, and improving the use of medications like Suboxone.

Neighborhood Health Plan in Boston is one of those plans. Its chief medical officer, Dr. Paul Mendis, says the insurer has developed algorithms to identify who is at risk for relapsing after drug abuse treatment, and has hired social workers to reach out to those members.

Mendis says they look for members who have a traditional medical diagnosis as well as a substance use issue.

"You actually have to, in many cases, reach out using their other medical diagnosis as the reason for the outreach," Mendis says. "If you just call somebody cold and say, 'We found you,' I don't think those calls would be well-received." The health insurer is also piloting a program in which a recovery coach is assigned to members who land in the hospital after an overdose.

For any such program to work, the person with the drug problem has to trust the insurer's recovery coach, social worker or case manager.

Andrade says she quickly came to trust her case manager, even though many other people in her life have let her down along the way. She started using drugs as a teenager, she says, after both her parents left home and she was essentially homeless. She temporarily stayed in foster care and with various family members or boyfriends — some of them abusive. Her son was born six years ago, but she lost custody and her drug use spiraled.

The case manager from CeltiCare is now working on helping her find a job and more permanent housing, she says. And he and others are holding her accountable in ways she believes will help keep her on track in her recovery.

"I have, in one of my poems," Andrade says, " 'Don't let anyone diminish your self-confidence, your pride. If you feel something, it means that you tried.' I at least want to try for all the people that tried for me."

A version of this story ran on WBUR's blog CommonHealth, where you can find more coverage of the opioid addiction crisis in Massachusetts.

Copyright 2016 WBUR. To see more, visit WBUR.
Categories: NPR Blogs

What's Your Type? With Diabetes, It Can Be Unclear

Mon, 01/25/2016 - 12:23pm

Just because you use insulin doesn't mean you have Type 1 diabetes.

Purestock/Getty Images

A drop in the number of newly-diagnosed diabetes cases is good public health news. But for the Type 1 diabetes community it's a source of frustration, because the numbers hide their story.

Last month, the Centers for Disease Control and Prevention announced that new cases of diagnosed diabetes among adults in the U.S. had finally dropped after decades of growth, from 1.7 million in 2008 to 1.4 million in 2014.

The decline in new cases gives "confidence that our diabetes prevention efforts are working and we are moving in the right direction," CDC officials said via email to Shots. "We know that long-term lifestyle changes in those at high risk are critical to prevent Type 2 diabetes and maintain this progress."

While it's certainly the right direction for the more common Type 2 diabetes, the findings don't apply to Type 1, a different condition that appears to be on the rise and that is not caused by obesity or lifestyle factors. Rather, Type 1 diabetes results from an autoimmune destruction of the insulin-producing cells of the pancreas.

And while Type 2 diabetes is linked to obesity and can typically be managed with diet, physical activity, and various medications including insulin for some, Type 1 always requires insulin treatment, either with multiple daily injections or an infusion pump, and is far more labor-intensive to manage.

Type 1 is believed to make up roughly 5 percent of the total 29 million adults and children in the U.S. who currently live with diabetes, or about 1.5 million people. But, the actual number isn't really known, and some surveys have suggested there may be twice that many.

The new CDC numbers came from the National Health Interview Survey (NHIS), which asked adult respondents whether a health professional had ever told them they have diabetes. The survey doesn't ask what type.

This is a problem, according to officials with the T1D Exchange, a nonprofit organization that includes a clinic network, registry, biorepository, and online patient community. In an open letter to the CDC, the Exchange's executive director Dana Ball and chief medical officer Dr. Henry Anhalt called for clarification of the announced decrease in new diabetes cases.

"Comingling of the data, particularly from the leading national public health institute of the United States, perpetuates the myth that diabetes is one disease sharing a name, while the reality is that Type 1 and Type 2 diabetes are actually two different diseases in the diabetes family," Ball and Anhalt wrote.

One concern, Anhalt told Shots, is that scientists seeking funding for research into Type 1 diabetes might be turned down if the condition is perceived to be on the decline, when in fact the opposite appears to be the case.

Most of the available data on Type 1 diabetes are in children, even though a large proportion of people with the condition are adults who developed it either as children or in adulthood.

In a large multisite study called SEARCH for Diabetes in Youth that is jointly funded by the CDC and the National Institute of Diabetes and Digestive and Kidney Diseases, there was a 21 percent increase in the number of new cases of Type 1 diabetes in children between 2001 and 2009. Increases were seen in kids of all ages, as well as in ethnic or racial minority groups that are more commonly associated with Type 2.

And according to the International Diabetes Federation's Seventh Atlas , released in 2015, the number of kids with Type 1 diabetes worldwide had risen 9 percent since the Sixth Atlas, from 2013.

Researchers don't know why Type 1 diabetes is rising, and it's important to find out, Anhalt said. "The call to action was not necessarily to say CDC is bad. But if you don't have a way to do it, find one, because obtaining those data is vital."

But that's not so easy, says Edward Gregg, chief of the Epidemiology and Statistics Branch in the CDC's Division of Diabetes Translation. "Our national survey data unfortunately don't have the detail necessary to accurately distinguish diabetes types," he told Shots.

For one thing, while the majority of adults with diabetes in the U.S. have clear-cut Type 2, many aren't familiar with the terminology or are confused about it. Because T1 used to be called "insulin-dependent" diabetes, some people still mistakenly believe that anyone treated with insulin has Type 1. In fact, between a quarter and a third of people with Type 2 are treated with insulin, typically after they've had the condition for several years.

And the former terms "juvenile" and "adult-onset" diabetes persist despite having been officially changed to Types 1 & 2 nearly 20 years ago, after it became clear that adults could develop the "juvenile" type. And Type 2 is now appearing in some overweight and obese children, particularly among African-American, Hispanic or Native American teenagers.

"When you survey people in the population you could ask them their type, but it would not be a super-accurate way of determining the prevalence," Gregg noted.

Health care providers are confused too. Some will simply diagnose all new-onset diabetes in adults as Type 2, since it wasn't appreciated until recently that Type 1 can and often does first appear in adults in their 20s, 30s, 40s, and even older. (Because Type 1 onset tends to be slower in adults, it's often called "latent autoimmune diabetes of adulthood," or "LADA.")

And for pediatricians, it may be difficult to tell which diabetes type an overweight or obese child or teenager has.

Indeed, the overall rise in obesity has furthered the diagnostic confusion. People with Type 1 were generally thin in the past, but today that's no longer the case (in the developed world, anyway).

Although obesity isn't the driver of Type 1 diabetes as it is in Type 2, people with Type 1 diabetes today are at least as likely to be overweight or obese as the general population. And with that, they may also display similar heart disease risk profiles as do people with Type 2 diabetes – in fact, heart disease is believed to be the number one killer of people with Type 1 diabetes, as it is for Type 2.

Adding to the confusion, there are other genetic types of diabetes that are also commonly misdiagnosed as either Type 1 or Type 2. Some of those people are put on insulin unnecessarily, making them vulnerable to weight gain and potentially dangerous low blood sugar episodes.

While some laboratory tests can help determine diabetes type, none are perfect and the most accurate one – checking for antibodies associated with Type 1 diabetes – is not routine and can be costly. (The genetic tests are even more expensive.)

Endocrinologist M. Sue Kirkman, a professor of medicine at the University of North Carolina, Chapel Hill, doesn't ask diabetes patients about their type. Instead, she asks about factors such as their age and symptoms at diagnosis, medication history and family history of diabetes.

"There's a lot of confusion, Kirkman says. "It's not infrequent to see medical records that say Type 2 diabetes, but when we ask the patient some of those questions it's clearly Type 1." And if the type still isn't clear, she'll order an antibody test.

While some argue that knowing the type may not matter as long as the person's blood sugars are well-controlled, mix-ups can have serious consequences. For example, in adult hospital settings, where Type 2 diabetes is extremely common, the fact that insulin can't be withheld for long periods of time – such as for a surgical procedure - in Type 1 patients may be overlooked, Kirkman notes.

Besides, she says, "I actually think it's important for people to understand what kind of diabetes they have, even if [their current treatment] is working. I think it's important to be educated about what's wrong with your body."

Kirkman agrees with the T1D Exchange that CDC should work to improve its data gathering. "I hope the CDC can in the future distinguish better, because I think it's really important to know what's going on with one and the other."

In fact, Gregg says, CDC is addressing the issue in several ways. His team has developed new questions for the NHIS aimed at better distinguishing between the diabetes types, including the age at diagnosis, the interval between diagnosis and starting insulin (a short time would suggest Type 1), and whether insulin use was ever stopped (a long period without insulin would suggest Type 2).

Those questions are being field tested, he said, noting that "we'd be getting a better estimation of proportion of Type 1 versus Type 2, although it won't be perfect."

And, in addition to co-funding the SEARCH study, which looks at both Type 1 and Type 2 diabetes in youth, CDC has also recently issued a request for applications for research specifically to investigate rates of Type 1 diabetes in young adults, with a due date of February 23rd. "That would also hopefully fill this data gap," Gregg said.

Meanwhile, some diabetes experts say that it's time for a complete overhaul of the way diabetes is classified by basing it on underlying causes rather than potentially misleading descriptive characteristics.

In a perspective published last week in the American Diabetes Association journal Diabetes Care, the authors wrote, "The current classification system presents challenges to the diagnosis and treatment of patients with diabetes... in part due to its conflicting and confounding definitions of Type 1, Type 2, and [LADA]...We urge that the time is right to convene a committee of diabetes community leaders and researchers to reevaluate the current outmoded [diabetes] classification system."

Miriam E. Tucker is a freelance journalist specializing in medicine and health. You can follow her on Twitter @MiriamETucker.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

Fight To Lower Drug Prices Forces Some To Switch Medication

Mon, 01/25/2016 - 5:10am
Listen to the Story 4:22
  • Playlist
  • Download
  • Embed Embed" /> Close embed overlay <iframe src="http://www.npr.org/player/embed/463809474/464266304" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
  • Transcript

Tim Kilroy runs a business from his home in Arlington, Mass. His insurance company quit covering the long-acting Ritalin that helps him manage his ADHD.

Ellen Webber for NPR

Steve Miller has some customers on offer. Millions of them in fact.

The chief medical officer at Express Scripts, the largest pharmacy benefit manager in the U.S., has been essentially auctioning off his 80 million customers to the drug companies that will give him the best deal.

"Who wants my market share?" Miller says. "Whoever will give me the best price, I will reward you with an enormous amount of market share."

Miller is the most vocal leader in what has become a war on drug prices.

Express Scripts and its rivals including CVS/Caremark and OptumRX manage prescription drug coverage for insurers and employers. They're trying to spark price wars among drugmakers by refusing to pay for some brand-name medications unless they get a big discount.

The result is that average costs for many drugs are falling. At the same time, consumers are being forced to change medications, sometimes to brands that don't work as well for them.

Tim Kilroy is a father of five who runs a business out of his home in Arlington, Mass. Kilroy has attention deficit hyperactivity disorder — ADHD — and he is dependent on his medications to keep his mind, and therefore his business and family life, in order.

"I had tried several drugs," he recalls. "I had tried Concerta; I had tried Adderal. Finding the right dosage can be really challenging."

He spent six years trying medications, adjusting doses, switching and starting over before he and his doctor settled on a long-acting form of Ritalin. He'd finally landed on the drug that worked for him. But about a year ago he switched insurance and the new pharmacy benefit company — United Health Care's Optum subsidiary — refused to pay.

"I thought, 'How dare you,' " Kilroy says. "How dare this company that I pay money to tell me how to manage my health care. I was really, really angry."

He paid for the Ritalin once, but it cost more than $120 a month on top of his insurance premiums. So he asked his doctor to move him to another medication that was covered. Kilroy says it does a good job controlling his ADHD, but the side effects include a swollen prostate that makes it difficult to urinate. So now he's switching insurers again so he can get back on Ritalin.

Kilroy is just one of millions of people affected by this battle between drug companies trying to make as much money as possible and insurers trying to drive down those prices. This year, more than half of all people with insurance will have some medications excluded from coverage, says Ronny Gal, a drug industry analyst at investment firm Alliance Bernstein in New York.

"Drug companies have been pricing their drugs largely along the lines of, you know, whatever you can get away with and still have the patient get the drug," he says. "This year exclusion will become a standard feature of the industry, which is actually quite a shocker for a lot of patients."

Express Scripts pioneered the strategy two years ago, when it announced it would no longer pay for 48 brand-name drugs. Right out of the gate it took on some big-name products, such as Advair — the blockbuster asthma drug made by GlaxoSmithKline, now known as GSK.

Advair's price had risen more than 20 percent in 2013, according to data from SSR Health, a New Jersey-based investment research firm. Then on Jan. 1, 2014, Express Scripts tossed Advair off its drug list and moved its customers to rival asthma drug Symbicort.

The results were immediate. Sales of Advair dropped $1.8 billion that year. The prices of both Advair and Symbicort fell 20 percent in 2014 and are still falling. GSK spokeswoman Jenni Ligday said in a statement that Advair was restored to Express Scripts' formulary last year.

// Require.js is on the page (new Seamus) if (typeof requirejs !== 'undefined') { // Create a local require.js namespace var require_asthma_prices_20160122 = requirejs.config({ context: 'asthma-prices-20160122', paths: { 'pym': 'http://apps.npr.org/dailygraphics/graphics/asthma-prices-20160122/js/lib/pym' }, shim: { 'pym': { exports: 'pym' } } }); // Load pym into locale namespace require_asthma_prices_20160122(['require', 'pym'], function (require, Pym) { // Create pym parent var pymParent = new Pym.Parent( 'responsive-embed-asthma-prices-20160122', 'http://apps.npr.org/dailygraphics/graphics/asthma-prices-20160122/child.html', {} ); // Unbind events when the page changes document.addEventListener('npr:pageUnload', function (e) { // Unbind *this* event once its run once e.target.removeEventListener(e.type, arguments.callee); // Pym versions with "remove" if (typeof pymParent.remove == 'function') { pymParent.remove(); // Pym version without "remove" } else { // Unbind pym events window.removeEventListener('message', pymParent._processMessage); window.removeEventListener('resize', pymParent._onResize); } // Explicitly unload pym library require_asthma_prices_20160122.undef('pym'); require_asthma_prices_20160122 = null; }) }); // Require.js is not on the page, but jQuery is (old Seamus) } else if (typeof $ !== 'undefined' && typeof $.getScript === 'function') { // Load pym $.getScript('http://apps.npr.org/dailygraphics/graphics/asthma-prices-20160122/js/lib/pym.js').done(function () { // Wait for page load $(function () { // Create pym parent var pymParent = new pym.Parent( 'responsive-embed-asthma-prices-20160122', 'http://apps.npr.org/dailygraphics/graphics/asthma-prices-20160122/child.html', {} ); }); }); // Neither require.js nor jQuery are on the page } else { console.error('Could not load asthma-prices-20160122! Neither require.js nor jQuery are on the page.'); }

Express Scripts isn't alone. Caremark, Optum and Prime Therapeutics also refuse to pay for some name-brand medications. Dr. David Lassen, the chief medical officer at Prime, which is the pharmacy benefit manager for several Blue Cross and Blue Shield plans, says the company offers an exclusion option to its health plan customers.

He says insurers are knocking drugs off their coverage lists because drug companies have undermined their other efforts to contain costs. In the past, insurers would charge a high copay for expensive drugs to steer customers to cheaper alternatives.

"The pharmaceutical companies have developed member coupons, and many times those coupons wipe out the members' copay for them," Lassen says. "It really kind of circumvents the intended benefit design."

The strategy of refusing to pay for some medications has forced drug companies to offer deep discounts on medications that have competition, according to analyst Richard Evans of SSR Health. While list prices for drugs have continued to rise, Evans wrote in a September report that after discounts drug prices rose only 0.7 percent in the second quarter of 2015 compared with a 4.4 percent increase in the same quarter a year earlier.

For many customers, the changes are a small inconvenience. They have to call their doctors and ask for a prescription for a new brand of painkiller, acne medicine or asthma inhaler. The alternatives often work fine.

But that's not always the case, as Kilroy's situation illustrates.

Oncologist Barbara McAneny, immediate past chairman of the American Medical Association, says very few chemotherapy drugs are excluded from approved drug lists. But the medications used to help patients get through chemo, like painkillers and hormone treatments, are. This complicates her ability to care for her patients.

"Some patients will tolerate one pain medicine, for example, but not another," she says. "One can cause nausea and the other pain medicine doesn't."

If a medication is working, McAneny says it's totally inappropriate for anyone to change that medication and cause the patient to have symptoms.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

Young People Surprised By Risky Synthetic Drugs They Considered Safe

Sat, 01/23/2016 - 10:42am

A man prepares to smoke synthetic marijuana on a street in East Harlem in New York City.

Spencer Platt/Getty Images

My 14-year-old patient grabbed my hand and told me that he was going to die.

Just seconds before, the nurse had wheeled him into the resuscitation room. His blood pressure and heart rate were more than twice the normal levels. He was pale, clammy and gasping for breath.

The nurses and doctors with me in the ER worked to stabilize him. We put an oxygen mask on his face. We inserted two IVs and began pumping fluids into his body. When his oxygen level dropped, we inserted a breathing tube.

In the meantime, we observed that there was no sign of trauma or active infection. The electrocardiogram showed that this wasn't a heart attack. His blood tests were unrevealing.

What was causing his symptoms? It was his friends who told us what happened. They were experimenting with what they said they thought were "totally safe" and "natural" drugs — substances called Spice or K2 that are often referred to as synthetic marijuana.

In the past, the drugs had given the teenagers a quick high. This time, they experienced hallucinations. Some threw up. My patient was the one who got the sickest.

This would be a frightening scenario for any friend or family member, but what makes it worse is that this isn't an isolated incident. In the past two years, cities across the U.S. have seen surges in ER visits and hospitalizations tied to an evolving category of chemical substances known as synthetic drugs.

In Baltimore, where I serve as the health commissioner, we have seen a marked increase in the use of these drugs, along with a spike in adolescents seeking urgent medical care.

Patients present with a range of symptoms, from agitation, hallucinations and psychosis to dangerously high blood pressure and seizures. Most recover with supportive therapy. Some, however, experience irreversible heart, brain and kidney damage. A few die.

How is it that these dangerous drugs can be so widely accessible?

One reason is that they encompass a large of number of compounds. Some are similar to amphetamines; others have ingredients similar to cannabinoids (the active ingredients in marijuana) and are referred to as synthetic marijuana. Since the Drug Enforcement Administration's first ban on some synthetic drugs in 2011, more than 250 similar compounds have surfaced in their place.

Another reason is misleading advertising. Sold in gas stations, corner stores and online, these drugs are marketed as room fresheners, herbal incense, bath salts or potpourri. In fact, they consist of chemicals sprayed onto dried plants and are intended solely for human consumption.

Many young people falsely believe that these synthetic drugs provide a safe and legal alternative with the same high as illicit drugs. However, some synthetic cannabinoids can be up to 100 times more potent than marijuana. Moreover, users don't know which of thousands of chemical combinations they may be taking. Scientists have equated taking synthetic drugs with a game of Russian roulette.

If federal regulation of these substances is so challenging, what can be done to reduce the harmful effects on our youth?

First, local legislative efforts can be effective. New York City and Washington, D.C., are among major cities that passed legislation in 2015 to ban the sale of synthetic drugs. In Baltimore, we introduced a bill to impose civil as well as criminal penalties to sellers. It also allows inspectors to remove these drugs from stores at time of discovery, and provides a mechanism for citizens to anonymously report stores selling these substances.

Second, businesses themselves can take action. After we sent 1,300 letters to local stores, many have posted "Not a Drug Dealer" signs in their windows. Some have voluntarily reported distributors that are illegally selling synthetic drugs.

Third, parents, teachers, pediatricians and others who work with teens should be aware of the dangers of synthetic drugs and speak with children and adolescents. In Baltimore, we launched a public education campaign called "Don't Roll the Dice With Spice." Similar efforts exist in Minnesota, New York City and Washington, D.C.

My 14-year-old patient regained consciousness and recovered without long-term damage. He said that he had no idea that what he took would make him so sick. I hope that other young people will not require a near-death experience to prompt them to avoid these dangerous synthetic drugs.

Dr. Leana Wen is the Baltimore City Health Commissioner. Follow her on Twitter: @DrLeanaWen and also @BMore_Healthy.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

Dance Returns The 'Joy Of Movement' To People With Parkinson's

Sat, 01/23/2016 - 8:13am
Listen to the Story 5:25
  • Playlist
  • Download
  • Embed Embed" /> Close embed overlay <iframe src="http://www.npr.org/player/embed/463222589/464090986" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
  • Transcript

The routines that students learn at Dance for PD classes in Venice, Calif., can be quite challenging, instructors say.

Courtesy of Joe Lambie and Laura Karlin

If you pictured a dancer, you probably wouldn't imagine someone with Parkinson's disease. Worldwide, there are 10 million people with the progressive movement disorder, and they struggle with stiff limbs, tremors and poor balance.

But over the past 15 years or so, a few thousand have taken dance classes that are part of a program called Dance for PD. It began in Brooklyn and has spread throughout the country and around the world. It has also attracted the attention of scientists interested in the ways dance might ease symptoms.

The program in Venice, Calif., is in its fifth year. One recent afternoon, "Broadway Baby" blasted from the sound system as nearly two dozen people tried to imitate the movements of instructor Linda Berghoff. The students are people with Parkinson's and their spouses or caregivers. For the moment, everyone was seated, but with bodies pulled upright, arms stretched and fists pumping in time to the music.

It was a challenging routine, keeping a one-two beat with one arm, and a three-part rhythm with the other. Berghoff shouted encouragement over the music. She's lean and fit and looks younger than her 65 years. Though never a professional dancer, she's danced all her life — even after her own diagnosis of Parkinson's disease 10 years ago.

"When I was diagnosed, the thought that I would no longer dance again terrified me," she tells Shots. "I'd be stripped of the thing I love the most."

The diagnosis was also a blow to Laura Karlin, a long-time friend who describes Berghoff as her second mother.

Karlin was looking for something she could do to support her friend. She asked Berghoff, "Do you want to do yoga together? Do you want to dance together? Do you want to start a dance class together?"

The dance class was the winner. And a reasonable choice, considering that Karlin is the artistic director of the Invertigo Dance Theatre, which has a performing company and also offers classes. Invertigo's dance class tailored to people with Parkinson's disease began in 2011; the company now sponsors five such courses around the L.A. area.

Dance students and teachers strike a pose at Invertigo Dance Theatre's class for people with Parkinson's.

Ina Jaffe/NPR

And each one is a real dance class, Karlin says.

"We don't dumb it down. I believe very much in making this a really joyful and challenging experience," she says. "But it has to be both challenging and kind of satisfying."

Karlin learned what she needed to know to start her Parkinson's program at the Mark Morris Dance Center in Brooklyn, where Dance for PD began about 15 years ago. David Leventhal is the director of the Mark Morris program. At the beginning, he says, it was trial and error because "there's no one type of Parkinson's, no one set of symptoms."

Shots - Health News The Neuroscience Of Musical Perception, Bass Guitars And Drake Shots - Health News Your Brain's Got Rhythm, And Syncs When You Think

There are some small, short-term studies that suggest dance might improve some of those symptoms, especially ease of walking. But Leventhal says the class was never intended as just physical therapy.

"There's also an artistic quality," he says, "where we're hoping people are able to say something with those gestures." This is particularly relevant to people with Parkinson's, who start to lose their expressive ability and "feel themselves pull away from who they thought they were."

The program at the Mark Morris Dance Center began as a partnership with the Brooklyn Parkinson Group. But for the past eight years, Mark Morris instructors have been training other dance companies — like L.A.'s Invertigo Dance Theatre — to conduct classes of their own. There are now programs in 40 states and 13 other countries.

"It's such a natural, intuitive idea that dance should be a good thing for Parkinson's, that people have just gone ahead and done it" without scientific verification that it actually helps, says Dr. Pietro Mazzoni. He teaches neurology at Columbia University Medical Center and heads the Motor Performance Laboratory there.

Mazzoni says the few small studies that have been done don't explain why dancing can help people with Parkinson's, or what routine might be better than another, or how long the effects last. So he's beginning a larger study that may answer those questions.

Scientists are only beginning to study whether dance does something for people with Parkinson's that more typical physical therapy can't achieve.

Courtesy of Joe Lambie and Laura Karlin

One of the theories he'll be testing is that people with Parkinson's move less because the disease triggers more than tremors and other physical symptoms — it also robs them of their ability to enjoy moving.

"I've heard patients spontaneously describe the beginning of their symptoms using language like, 'I didn't enjoy walking with my husband anymore,' " Mazzoni says. " 'I could do it; it just wasn't fun.' "

So Mazzoni's work will look at psychological factors as well as physical ones. Then he'll compare the dancers to people getting traditional physical therapy.

"It may be that dance is not just a nicer form of physical therapy," he says. "It may be that it has the key to producing long lasting changes."

It seems to be helping 76-year-old Willie Marquez. He and his wife Lenore heard about the dance class from his doctor, when Marquez got his Parkinson's diagnosis three years ago.

"We got in the car and ran over here," he says.

Marquez says taking the class is a "no brainer" because he and his wife have been dancing together since they met — 52 years ago. Willie Marquez was teaching salsa in those days. The couple still moves confidently across the floor, now side by side, surrounded by fellow students.

They're all trying out a new routine and it looks pretty rough. But they throw themselves into it. As Laura Karlin always reminds them, there are no mistakes in dance — just solos.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

Debate Sharpens Over Single-Payer Health Care, But What Is It Exactly?

Fri, 01/22/2016 - 1:39pm

Sen. Bernie Sanders, the independent from Vermont, has made a particular form of health care finance part of his campaign pitch.

Andrew Harrer/Bloomberg via Getty Images

Health care has emerged as one of the flash points in the Democratic presidential race.

Vermont Sen. Bernie Sanders has been a longtime supporter of a concept he calls "Medicare for All," a health system that falls under the heading of single- payer health care.

Sanders released more details about his proposal shortly before the Democratic debate in South Carolina on Sunday. "What a Medicare for All program does is finally provide in this country health care for every man, woman and child as a right," he said in Charleston.

Sanders' main rival for the nomination, former Secretary of State Hillary Clinton, has criticized the plan for raising taxes on the middle class and says it is politically unattainable. "I don't want to see us start over again with a contentious debate" about health care, she said Sunday.

Some of the details of Sanders' plan are still to be released. But his proposal has renewed questions about what a single-payer health care system is and how it works. Here are some quick answers.

What Is A Single Payer?

A single payer refers to a system in which one entity (usually the government) pays all the medical bills for a specific population. And usually (though, again, not always) that entity sets the prices for medical procedures.

A single-payer system is not the same thing as socialized medicine. In a truly socialized medicine system, the government not only pays the bills but also owns the health care facilities and employs the professionals who work there.

The Veterans Health Administration is an example of a socialized health system run by the government. The VA owns the hospitals and clinics and pays the doctors, nurses and other health providers.

Medicare, on the other hand, is a single-payer system in which the federal government pays the bills for those who qualify, but hospitals and other providers remain private.

Which Countries Have Single-Payer Health Systems?

There are fewer than many people might think. Most European countries either never had or no longer have single-payer systems. "Most are basically what we call social insurance systems," says Gerard Anderson, a professor at Johns Hopkins Bloomberg School of Public Health who has studied international health systems. Social insurance programs ensure that almost everyone is covered. They are taxpayer-funded but aren't necessarily run by the government.

Germany, for example, has 135 "sickness funds," which are essentially private, nonprofit insurance plans that negotiate prices with health care providers. "So you have 135 funds to choose from," said Anderson.

Nearby, Switzerland and the Netherlands require their residents to have private insurance (just like the Affordable Care Act does), with subsidies to help those who cannot otherwise afford coverage.

And while conservatives in the United States often use Great Britain's National Health Service as the poster child for a socialized system, there are many private insurance options available to residents there, too.

As far as countries that have true single-payer systems, Anderson lists only two: Canada and Taiwan.

Are Single-Payer Plans Less Expensive Than Other Health Coverage Systems?

Not necessarily. True, eliminating the profits and duplicative administrative costs associated with hundreds of different private insurance plans would reduce spending, perhaps as much as 10 percent of the nation's $3 trillion annual health care bill, says Anderson. But, he notes, once those savings are achieved, there wouldn't be further reductions afterward.

More important, as many analysts have noted, is how much health services cost and how those prices are determined. In most other developed countries, even those with private insurance, writes Princeton health economist Uwe Reinhardt, prices "either are set by government or negotiated between associations of insurers and providers of care on a regional, state or national basis." By contrast, in the U.S., "the payment side of the health care market in the private sector is fragmented, weakening the bargaining power of individual insurers."

Would Medicare For All Be Just Like The Existing Medicare Program?

No, at least not as Sanders envisions it. Medicare is not nearly as generous as many people think. Between premiums (for doctor and drug coverage), cost-sharing (deductibles and coinsurance), and items Medicare does not cover at all (most dental, hearing and eye care), the average Medicare beneficiary still devotes an estimated 14 percent of all household spending to health care.

Sanders' plan would be far more generous, including dental, vision, hearing, mental health and long-term care, all without copays or deductibles (which has given rise to a lively debate about how to pay for it and whether middle-class families will save money or pay more).

Would Private Insurance Companies Really Disappear Under Sanders' Plan?

Probably not. Private insurers are fully integrated into Medicare, handling most of the claims processing and providing supplemental coverage through "Medigap" plans. In addition, nearly a third of Medicare beneficiaries are enrolled in private managed care plans as part of the Medicare Advantage program.

Creating an entirely new federal claims processing structure would in all likelihood be more expensive than continuing to contract with private insurance companies. However, Sanders makes it clear that insurers in the future would no longer be the risk-bearing entities they are today, but more like regulated utilities.

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Julie Rovner is on Twitter: @jrovner.

Copyright 2016 Kaiser Health News. To see more, visit Kaiser Health News.
Categories: NPR Blogs

U.S. Lags Behind Other Countries In Reducing Stillbirths

Fri, 01/22/2016 - 11:13am

Losing a pregnancy after 20 weeks is more common in the U.S. than in other developed countries.

Andy Feltham/EyeEm/Getty Images

Stillbirth remains largely hidden from society, and the tragic loss of a fetus late in pregnancy remains far too common.

A collection of research published Monday in The Lancet pulls back the curtain on the often-ignored subject and gives a global snapshot of the countries making the most progress to lower death rates.

In the U.S., the stillbirth rate is 3 per 1,000 births, putting it 22nd among 186 countries. What's more, that rate has barely budged in 15 years, declining just 0.4 percent. That's slower progress than was seen in all but a handful of countries.

In sheer numbers, that means there were 11,260 stillbirths last year in the U.S., if you use the World Health Organization's definition: fetal death after 28 weeks of pregnancy. That's the definition used to make the comparisons between countries in the report.

The U.S. uses a broader definition, defining it as death after 20 weeks. By that measure there were an estimated 22,750 stillbirths last year, about the same number as infant deaths.

There's no single reason the U.S. has a higher rate of stillbirths than other industrialized countries like Switzerland, Australia, Germany and Japan, says Robert Silver, one of the authors of the research and a professor of obstetrics and gynecology at the University of Utah. The U.S. is large and diverse, with big income differences between the richest and poorest citizens. That contributes to health outcomes that often aren't as good as smaller, more racially and economically homogeneous countries.

The stillbirth rate for women living in bad socioeconomic conditions is twice that of someone living in better circumstances. "In part, that's due to health care access," says Silver. Better medical care before conception, during pregnancy and during labor is linked to lower stillbirth rates.

That's especially important when there's an underlying condition such as diabetes or high blood pressure, which are both risk factors for stillbirth. So is obesity, independent of those diseases for reasons that aren't known. Nor is it understood why non-Hispanic blacks have two to three times the risk of stillbirth than whites, says Suzan Carmichael, a professor of pediatrics at the Stanford University School of Medicine who has researched stillbirth.

While a number of risk factors have been identified, the actual cause of most stillbirths remains unknown, says Carmichael. "It's very understudied," she says.

Silver says that when a woman has a stillbirth it's typically not investigated, even though research has shown a cause can usually be found if properly studied. The autopsy rate in the U.S. for stillbirths is the lowest among developed countries, according to the American College of Obstetricians and Gynecologists. High-quality perinatal autopsies are expensive and require pathologists experienced in the procedure, says Silver. And grieving parents are often initially reluctant to have an autopsy done, while doctors may be too uncomfortable to suggest one.

In some countries there are audits in which outside clinicians review stillbirth cases to see if anything could have been done to change the outcome, but those are not commonly done in the U.S., says Silver.

Carmichael says it's essential to get more consistent, more complete, more detailed and more systematic data on stillbirths. Currently the data are inconsistent. And stillbirth is often thought of — and studied — as separate from other areas of maternal-fetal medicine, like preterm birth, when really it likely shares a lot of common origins, she says.

"There's a tremendous return on investment to reducing stillbirths," says Silver. Those efforts will "also reduce premature births and medical problems in moms and babies," he says. And reduce the emotional toll as well.

Katherine Hobson is a freelance health and science writer based in Brooklyn, N.Y. She's on Twitter: @katherinehobson

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

A Common Secret: Struggling With The Stigma Of Herpes

Fri, 01/22/2016 - 9:18am

A human cell infected with herpes simplex virus type 2 (shown in red).

David M. Phillips/Science Source

Meeting girls at the bar didn't come as easily for Adrial Dale as it did for his friends. Standing on the sidelines, Dale watched his pals saunter up to women, cool and confident, perfect for the pickup scene.

But Dale could never bring himself to do it. He was terrified about having to reveal a secret, one that had brought him shame for years.

In 2005, Dale was diagnosed with herpes simplex type 2, a virus that causes genital herpes. He first noticed a lesion on his genitals when he was taking a shower. In that moment, he said, the world went blank.

He immediately called a nearby clinic in North Carolina and went in to get checked out. From then on, he felt like a different person.

"I noticed a pattern in myself. I was still judging myself for having herpes," Dale, 36, said. "I was convinced that this was pretty much a death sentence to my love life."

While herpes is common in the U.S., many people face psychological issues and suffer silently because of herpes' stigma.

The Centers for Disease Control and Prevention estimates 15.5 percent of people ages 14 to 49 in the U.S. have HSV-2 infections. More than half of people in the same age range had herpes simplex virus type 1, most commonly associated with cold sores. But more people are being diagnosed with HSV-1 on their genitals.

Herpes can be transmitted when there are no physical symptoms present, and the CDC estimates that nearly 90 percent of those infected with HSV-2, the most common cause of genital herpes, have never been diagnosed.

Symptoms can include painful lesions on the mouth or genitals, but over time, the eruptions tend to be less painful. Unlike chlamydia and gonorrhea, herpes doesn't affect fertility or other internal organs.

Statistically speaking, pretty much everyone knows someone who has herpes, but not many talk about it, said Jenelle Marie Davis, founder of The STD Project. A big reason is the stigma herpes carries. Society portrays people with a sexually transmitted infection as dirty and promiscuous, Davis said.

"People get infections all the time — colds and flu — and no one shames those people because there is no 'you did something bad to get this,' " she said. "As a society, we tell people how and who to have sex with, then you add a taboo infection as a result of being sexually active, and people go crazy."

Herpes infections can't be cured, but there are treatments, such as the pill Valtrex, to relieve symptoms and shorten eruptions. Regular treatment can make it less likely for someone to pass the virus on, too.

Having herpes doesn't consign a person to a life of celibacy, and many herpes-positive people go on to have active sex lives without transmitting the virus to others. Disclosure is key when starting a sexual relationship with someone, Davis said. Condoms lower the risk of transmission, but don't eliminate it.

"I was rejecting myself way before anyone else had the chance to reject me," said Adrial Dale, founder of Herpes Opportunity.

Courtesy of Marc LeMauviel

Today, Dale is a life coach and the founder of Herpes Opportunity, which helps people cope with herpes through blog posts, forums and weekend retreats that bring herpes-positive people together.

But he concedes that accepting his diagnosis wasn't easy. What helped him, he said, was having a support group, and realizing that herpes infections are common and can happen to anyone.

Disclosing his status to future partners was the scariest part. He's noticed that fear is common among other herpes-positive people who write about what they're going through on Herpes Opportunity forums.

"If I feel undesirable and unwanted, then the way I'm disclosing to potential partners has that undertone to it," Dale said. "I was rejecting myself way before anyone else had the chance to reject me."

For him, self-confidence was the key when it came to sharing his status with potential partners. "The more we shame and judge those 'dirty people with herpes,' the more ashamed they are of disclosing and saying that, yeah, it's just a skin condition, it's herpes," Dale said.

But it's also the case that failing to disclose herpes infection can have serious health consequences for a sexual partner who becomes pregnant.

Mariel David, 41, learned she contracted HSV-2 from her former husband, her first and only partner at the time, shortly after giving birth to their first child. A week after delivery, her daughter started having seizures. Doctors realized the girl had herpetic encephalitis, a condition that affects the human nervous system caused by the herpes simplex virus.

"My husband had been dishonest with me, and so I think he knew deep down inside he had something, but he didn't face the fact as to what it was," David said.

Doctors told David that her daughter wouldn't live through puberty. Despite the odds, David's daughter is turning 18 at the end of January, though her life comes with many difficulties. She is nonverbal and blind, and suffered from abnormal bone growth.

After she became aware of her herpes status, David took precautions during two subsequent pregnancies. She took suppressive treatments during her last trimester to reduce the chance for transmission of the virus and gave birth to two healthy children by C-section.

Sarah Ravani, who previously worked in NPR's development department, is now a student at Columbia University's Graduate School of Journalism in New York. You can follow her on Twitter: @Farrah_Joon.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

Study Erred In Finding No Link Between Teen Pot Use And Psychosis

Thu, 01/21/2016 - 1:32pm
iStockPhoto

Updated Jan. 22. 3:49 pm ET: The American Psychological Association emailed us to say that the correction they issued on Thursday was incorrect. The email says in part:

I am afraid that the correction we put out regarding the teen marijuana study was not accurate. We are in the process of placing this more accurate editor's note on the release on our website.

The original correction issued on Thursday by the APA said:

The study, published online Aug. 3 in Psychology of Addictive Behaviors, has been corrected because of a statistical error that affected some of the findings.

An excerpt from the updated correction posted on the APA website now reads:

Although these supplemental analyses indicated that teens who engaged in frequent marijuana use had a higher probability of meeting criteria for a psychotic disorder than infrequent/nonusers by their 30s, this difference did not reach statistical significance using a two-tailed test (p=.09).

We contacted the lead author of the study, Jordan Bechtold at the University of Pittsburgh Medical Center. In response, she writes to Shots in an email:

There were no errors in the original analysis. The analysis in the supplemental paper was slightly different than the original analysis. The goals in producing the commentary were to supplement the original paper with a new set of analyses, and to provide a word of caution regarding the interpretation of the results, particularly the psychosis findings.

The analysis used in the original study is called a two-tailed test. This looks for an effect in two directions. For example, it could test if marijuana increases the risk for psychosis and if marijuana reduces the risk. A one-tailed test would only look at one of those possibilities.

Here's the original post:

A surprising study that found no connection between male teens' marijuana use and the risk of psychotic disorders is in error, the researchers said Wednesday.

When the results were published last August in a journal of the American Psychological Association, even the researchers said their findings were surprising. Over the past couple of decades, there have been at least 10 different epidemiological studies that found smoking marijuana increases risk for developing psychosis later in life.

The APA released a statement saying that the "results from this study generated considerable controversy, including requests for supplemental analyses" because most previous studies have found that chronic teen cannabis users might be more prone to health problems, including mental illnesses and physical illnesses like respiratory problems.

This study, published in Psychology of Addictive Behaviors, originally found no connection between physical and mental problems in adults and smoking marijuana in their teen years.

Most of the studies on mental illness and weed, including this one, don't perfectly tease apart whether young adult cannabis use causes things like bipolar disorder or schizophrenia or if it's the other way around, says Krista Lisdahl, a clinical neuropsychologist at the University of Wisconsin in Milwaukee who was not involved in the study.

As we've written in Shots before, people with emerging psychotic disorders could be more likely to use weed than others. "Still, controlling for risk factors, marijuana does seem to increase the risk for psychotic disorders," Lisdahl says.

Once the researchers reanalyzed their data, they found that the men in the study who smoked weed as youngsters were more likely to have psychotic disorders, but still were not more likely to report any health problems than nonsmokers. The men are in their mid-30s, so it's still possible that an increased risk for problems that are more common in older folks, say heart disease or cancer, could appear in time.

It is curious that the researchers still didn't find a link between depression and weed smoking. This, too, has been connected in previous studies. If people with emerging psychotic disorders are more likely to use weed because they're trying to self-medicate, then you might imagine people with depression might do the same thing.

But Lisdahl says, it's really important to remember this study had about 400 men and no women. "It's really important to not generalize this to female," she says. "In my studies, the female marijuana users are the ones that really show increased depression and anxiety symptoms."

So, there are a few things that this study didn't examine, not to mention the wrong calculation around psychosis. The APA says the error is a statistical one. It could have come from a coding mistake when the authors analyzed the data, or it could be varying results from different statistical methods — the authors couldn't be reached for a comment at this time. In general, these mistakes are rare, but it also doesn't necessarily mean they're terrible researchers.

To the authors' credit, they admitted a few limitations in the original manuscript. The APA press release states:

The sample included young men who were using marijuana in the late 1990s and early 2000s and THC content has risen recently; data were obtained from self-reports; [statistical] power was low.

The APA statement also says:

The group difference on psychotic disorder approached statistical significance and would have been significant if a more liberal test (i.e., one-tailed) was utilized.

So they knew that the results, particularly where psychotic disorders are concerned, were always in question, and explicitly said so. It also reveals another thing about science: Results can change quite a bit depending on what statistical method you use to evaluate a small data set.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

Childhood Vaccination Rates Climb In California

Thu, 01/21/2016 - 9:54am

Julie Brand holds her 1-month-old daughter as she receives a hepatitis B vaccine at Berkeley Pediatrics in Berkeley, Calif.

Jeremy Raff/KQED

Maybe it was last January's big measles outbreak at Disneyland that scared more California parents into getting their kids vaccinated. Or maybe health campaigns have become more persuasive. Or maybe schools getting stricter about requiring shots for entry made a difference.

Whatever the reasons, childhood vaccination rates last fall went up in 49 of 58 counties in California, according to data released Tuesday by state health officials.

The California Department of Public Health annually reports vaccination data for kindergartners from nearly all public and private schools statewide. For the 2015-2016 school year, 92.9 percent of kindergartners were up-to-date on their shots — an increase of 2.5 percentage points from the previous term.

In California, as in the rest of the nation, 2015 was a year of heated debate around vaccines. It started last January with the first reports of a measles outbreak tied to Disneyland. Then, in early February, state lawmakers introduced a bill to eliminate the personal belief exemption, which has allowed California parents to easily refuse vaccines on behalf of their children.

The repeal of that exemption became law, to take effect in July 2016. But the percentage of parents citing personal belief exemptions is already declining in California, the newly released data show — from 2.54 percent of incoming kindergartners in 2014-15 to 2.38 percent this year. In addition, the percent of children receiving both doses of the vaccine against measles, mumps and rubella — or MMR — has increased from 92.55 percent to 94.59 percent statewide.

"I can only assume that this is in part a response to ... the measles outbreak and the publicity that that received," says Dr. Art Reingold, head of epidemiology at the University of California, Berkeley School of Public Health. "It's unfortunate that fear or outbreaks of disease are necessary to get people to do what we'd like them to do, but I think that's human nature."

Even Marin County, a hotbed for the anti-vaccine movement, saw its personal exemption claims drop — from 6.45 percent last year to 5.97 percent this year. The county's public health officer, Dr. Matt Willis, calls the decline in Marin's rate "great news," and notes that this is the third year in a row of increasing vaccination rates. "We haven't seen this many children vaccinated in Marin County since 2007," he says.

Still, a decline in the number of parents formally refusing to vaccinate their kids isn't the only reason for the statewide improvement in vaccination rates, according to James Watt, chief of the division of communicable diseases in the state's department of public health. Another big factor, Watts says, is a decline in what are known as "conditional admissions" to schools.

These are kids who show up on their first day of school having received some — but not all — of the required immunizations. Often, schools go ahead and allow these children to start class, with the understanding that their parents will make sure the students get the remaining shots as soon as possible. But that's not what the law demands.

"If those children could get a dose 'today,' they're not supposed to be admitted to school," Watt says. The problem, he explains, is that lots of kids have been enrolling with "conditional entry" who don't go on to get the rest of their shots.

By working with parents and school districts to explain and enforce the rules — and vaccinate more kids — the state was able to reduce the overall number of conditional admissions from 6.9 percent of all enrolled kindergartners in 2014-2015 to 4.4 percent this year.

"The outbreak of measles was a real wake-up call for all of us around this issue," Willis says. "It gave us a chance to speak openly as a community about what vaccination does for us. It gave us a chance to understand vaccination as a matter of community responsibility."

Dr. Olivia Lang, a Berkeley pediatrician, said she's seen a change in her practice, too. "There were a lot of families who had been waffling on vaccines, but perhaps were not strong believers in anti-vaccination ideals," she says. "But now they're saying, 'Well, I guess we're going to have to do it,' " and so they are getting their children vaccinated.

Starting with the 2016-2017 school year, all kindergartners and seventh-graders in California will need to be up-to-date on their immunizations to enter school. Only those children who cannot be vaccinated for medical reasons will be exempt.

A version of this story first appeared on KQED's State of Health blog.

Copyright 2016 KQED Public Media. To see more, visit KQED Public Media.
Categories: NPR Blogs

Was Dr. Asperger A Nazi? The Question Still Haunts Autism

Wed, 01/20/2016 - 11:03am

Dr. Hans Asperger with a young boy at the Children's Clinic at the University of Vienna in the 1930s.

Courtesy of Maria Asperger Felder

The publication of a new history of autism called In a Different Key, by John Donvan and Caren Zucker, has reopened an unsettling question about the pioneering Viennese pediatrician Hans Asperger: Was he a Nazi sympathizer, or a man who paid lip service to his bosses' murderous ideology in order to save the lives of as many of his young patients as possible?

The implications of this question are far-reaching, because Asperger's work on autism at the University of Vienna in the 1930s was ignored for decades after the war. That had a catastrophic impact on autistic people and their families, and on the course of autism research. The controversy also gets to the heart of the difficulty of accurately judging the behavior of people living under brutal regimes, particularly decades after the fact.

In Donvan and Zucker's view, Asperger was an ambitious opportunist who uncritically spouted Nazi ideology in his first public lecture on autism in 1938, and enthusiastically signed letters "Heil Hitler!" Most devastatingly, he signed a letter of referral effectively condemning a little girl with encephalitis named Herta Schreiber to death in a Vienna rehab facility that had been converted into a killing center by Asperger's former colleague, Erwin Jekelius.

Shots - Health News 'In A Different Key' Traces History And Politics Of Autism

Donvan and Zucker base their conclusions on documents allegedly uncovered by a Holocaust scholar in Vienna named Herwig Czech, whose grandfather was a Nazi. Czech has made a career of documenting the horrific crimes of the medical establishment under the Third Reich, while "outing" secret Nazis like neurologist Walther Birkmayer, who pioneered the use of a drug called L-dopa to treat Parkinson's disease but was a member of the dreaded SS.

While researching my own history of autism, NeuroTribes, published in 2015, I ultimately came to take a more nuanced view of Asperger as a compassionate clinician and educator working under the most difficult possible circumstances as Hitler and his henchmen rose to power. My book explores the historical background of the Nazis' attempt to wipe disabled people off the face of the earth, including the fact that the Third Reich's genocidal policies were inspired by eugenics research originally conducted in America under the auspices of mainstream scientific organizations like the Rockefeller Foundation and the Carnegie Institute.

Asperger, in the bottom row, far right, with other staff members at the Children's Clinic, realized in the 1930s that autism was a spectrum of disorders that conferred both disability and ability.

Courtesy of Maria Asperger Felder

I also made clear that once the Nazis marched into Austria to annex the country for the fatherland in 1938, nearly all of Asperger's colleagues became fervent members of the Nazi party, while his Jewish colleagues were purged from the faculty at the University of Vienna and forced to flee the country or face death in a concentration camp. Many chose to commit suicide instead.

I focused primarily on the years leading up to World War II and on the crucial work that Asperger and his colleagues did at the Children's Clinic at the university, before the Nazis took over and transformed the once hallowed institution of learning into a center for the study of "racial hygiene" staffed by bumbling fanatics. What I found led me to conclude that Asperger was the true discoverer of what we now call the autism spectrum — a lifelong condition with a broad and strikingly heterogeneous range of clinical presentations.

To come to that conclusion, I drew on the first case history of autism, written at the Children's Clinic in 1935 by Asperger's colleague psychologist Anni Weiss, which had been overlooked for 80 years. Weiss evaluated a boy named Gottfried who exhibited many traits now considered classic manifestations of autism — including difficulty in relating to his peers, which made him a frequent target of bullying, heightened sensitivity to sound, and a rigidly logical cast of mind. After having Gottfried take an intelligence test, one that he undertook with great difficulty, Weiss came to an astonishingly prescient conclusion. Instead of presuming that the shy, awkward boy was feebleminded, as many of his teachers had done, Weiss noticed that Gottfried was acutely anxious about violating the rules of the test, which hampered his performance. She concluded that in fact he was highly intelligent, but in a way that couldn't be captured by the usual standardized tests.

I discovered another forgotten paper written by an American psychiatrist named Joseph Michaels, who visited Asperger's clinic before the war. At first skeptical about the lack of psychoanalytical frameworks guiding the staff, Michaels was eventually converted by what he called the clinic's "highly personal" approach, which viewed eccentric behavior as problematic only if it created problems for the child. "Fundamentally there appears to be no special interest in the differences between normal and abnormal," Michaels wrote, "as it is felt that theoretically this is unclear, and practically it is of no great importance ... great value is placed on intuition gained ... while working, or better, while living with the children."

Asperger and his colleagues would eventually examine more than 200 children with autism at all levels of ability — from nonspeaking children who would always require assistance in their daily lives to a young man who became an assistant professor of astronomy after detecting an error in one of Isaac Newton's proofs. Asperger noted the prevalence of autistic traits among "distinguished scientists," and went so far as to say, "It seems that for success in science and art, a dash of autism is essential ... the necessary ingredient may be an ability to turn away from the everyday world, from the simply practical, an ability to rethink a subject with originality so as to create in new untrodden ways."

In his first talk on autism in 1938, which Donvan and Zucker put forth as evidence of Nazi sympathies, Asperger may well have emphasized his "most promising cases" to his Nazi bosses in part because newly passed eugenics laws in Austria targeted more impaired children for extermination. This tactic inadvertently led to one of the most pernicious myths about Asperger's legacy: that he only saw high-functioning children, when he made clear in his published work that he saw children from all points on the spectrum.

Donvan and Zucker's account of that lecture omits any reference to the most radical statement Asperger made that day: his observation that his patients' impairments were inextricable from their special gifts, forming "natural, necessary, interconnected aspects of one well-knit, harmonious personality." Later, he would make the prescient suggestion that the enhanced pattern-recognition abilities of his autistic patients would make them valuable code-breakers for the Reich. This view was completely at odds with the eugenicists' core belief that humanity could only thrive by shedding the "burden" of providing disabled people with the support they need, while they make contributions that only they can.

In this belief, Asperger anticipated the development of the modern neurodiversity movement, which views conditions like autism, dyslexia and ADHD as profound disabilities that can also convey striking gifts in the presence of adequate accommodations and educational resources.

As a clinician who worked with children with many types of hereditary disabilities, Asperger was in an acutely perilous position — particularly because the man who originally assigned him to work in the Children's Clinic, an infectious disease specialist named Franz Hamburger, became one of the most prominent Nazis in Austria. Hamburger portrayed the Fuehrer as a grand physician, opening up "new avenues of health for the 80 million folk of Germany."

Under the influence of fanatics like Hamburger, the distinction between normal and abnormal behavior became a litmus test that meant the difference between life and death. The Nazis embarked on a series of euthanasia campaigns to murder disabled children and adults in large numbers, which effectively became practice runs for the Holocaust. Doctors were required to report disabled children in their care, medical students were trained to administer lethal injections while filling out fictitious death certificates, and clinics and hospitals became factories of death — including the former rehab facility in Vienna called Am Spiegelgrund that became the primary killing center for all of Austria under the supervision of Erwin Jekelius.

Dissent in the ranks was punished harshly. A prominent bishop who objected to the mass murder of disabled children on religious grounds was quickly dispatched to a camp. Medical students at the University of Munich who opposed euthanasia were arrested, convicted of treason by a people's court and publicly beheaded. Asperger found himself in what he later described as a "truly dangerous situation." According to Adam Feinstein, author of A History of Autism, the Gestapo came to the clinic twice to arrest Asperger — and both times, Hamburger was able to send them away.

In order to retain his position at the university, the soft-spoken Asperger would have been required at the very least to take a loyalty oath to Hitler. After giving another talk in 1940, Asperger was chided by his colleague Josef Feldner for paying lip service to the Fuehrer, which, Feldner advised him, was "a bit too Nazistic for your reputation." Though nearly all of Asperger's colleagues eventually joined the Nazi party, Asperger never did.

Understanding the terrible historical forces that Asperger was up against makes sense of the oddly strident note he struck in his best-known paper, filed to Hamburger in 1943. "The example of autism shows particularly well how even abnormal personalities can be capable of development and adjustment," Asperger wrote. "This knowledge ... gives us the right and the duty to speak out for these children with the whole force of our personality."

Ultimately, Asperger's insights would inspire the British psychiatrist Lorna Wing to conceive of autism as a broad and inclusive spectrum instead of a rare, narrowly defined form of childhood psychosis — allegedly caused by unloving "refrigerator" parents — that was described by Leo Kanner, the child psychiatrist at Johns Hopkins Hospital who took sole credit for discovering the condition in 1943.

The real story was much more complicated than that. In fact, it was Kanner who rescued Georg Frankl and dozens of other Jewish clinicians from the gathering storm leading up to the Holocaust, reaping the benefits of Frankl's expertise by having him evaluate Kanner's first autistic patients. Kanner would go on to become the world's leading authority on autism, while mentioning Asperger's work only once in print, dismissively, much later in his career.

Rumors that Asperger was more compliant with his Nazi bosses than he himself suggested after the war have circulated for decades. As Donvan and Zucker point out, Eric Schopler, the founder of TEACCH — a pioneering autism education and research program in North Carolina — objected to Lorna Wing's coinage of the term "Asperger syndrome" for this reason, preferring the term "high-functioning autism." But In a Different Key raises the speculation about Asperger's character to a new level. Again citing Czech's research, the authors claim that Asperger served on a committee that decided which children should live and which should die, though they do not explore the possibility that Asperger could have used that position to save as many children as possible.

Czech has never made his information available to me, despite numerous requests of increasing urgency over the years, even after his allegations appeared in a review of my book in The Spectator by autism researcher Simon Baron-Cohen. But I was able to find support for his claim that Asperger signed the letter of referral sending Herta Schreiber to Am Spiegelgrund in the work of another scholar named Waltraud Hauepl, whose sister also perished there. I have amended the text of future editions of my book to reflect this darkest episode in Asperger's career.

It would be unfortunate if Donvan and Zucker's revelations are used to discredit the work of Asperger and his colleagues Georg Frankl and Anni Weiss. As filmmaker Saskia Baron points out in her review of In a Different Key in The Guardian, "Whether Asperger was a saint or a sinner should not dominate the discourse around autism." (She probed the ethical dimensions of the Third Reich's medical crimes in her documentary Science and the Swastika: Hitler's Biological Soldiers.) What matters is focusing on the availability of services and support for autistic people and their families — a population that has been drastically underestimated in history, primarily because Asperger's work was not made widely available in English until 1991.

Without her serendipitous discovery of Asperger's work when it was still being overlooked, the British psychiatrist Lorna Wing would never have been inspired to broaden the diagnostic criteria for autism into a spectrum that included what she called Asperger's syndrome, making support services available to a wide range of people — including teenagers and adults — who had been excluded from a diagnosis before.

The reframing of autism as a spectrum in the 1990s also made possible marvelous things that Asperger himself could never have predicted, such as the emergence of a vibrant autistic culture (embodied in books like The Real Experts: Readings for Parents of Autistic Children), and the proliferation of autistic-run organizations like the Autistic Self-Advocacy Network, which are demanding a place at the table when public policy that impacts autistic people and their families is formulated.

Asperger's daughter, Maria Asperger Felder, a pediatrician and psychiatrist in Vienna, told me recently that she is carrying on her father's work to this day, seeing autistic patients from age 5 to age 60. She also says that after the war, Georg Frankl immediately re-established contact with her father, and the two men maintained a lively correspondence about the progress of their patients, as they had done in the years before darkness fell in Austria. They also visited one another cordially in their respective home countries, which one wouldn't expect if Frankl believed that Asperger was a Nazi monster who had enthusiastically sent his young patients to their deaths.

I look forward to Herwig Czech finally making his research available to other scholars. But if Donvan and Zucker's allegations turn out to be true, the most important lesson of this tragic chapter in history is not that Asperger's work should be ignored, as it was in most of the world until developmental psychologist Uta Frith finally made it available in English. The most important lesson is not that brutal regimes like the Third Reich enable evil men to do evil, but that they are able to compel even well-intentioned people to do monstrous things.

Steve Silberman is author of NeuroTribes, a New York Times best-selling history of autism and the neurodiversity movement.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs

Opioid Abuse Takes A Toll On Workers And Their Employers

Wed, 01/20/2016 - 4:34am
Listen to the Story 4:30
  • Playlist
  • Download
  • Embed Embed" /> Close embed overlay <iframe src="http://www.npr.org/player/embed/462922517/463680951" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
  • Transcript

The effects of opioid abuse can go unnoticed at work.

George Doyle/Getty Images

Three decades ago, the treatment Michele Zumwalt received for severe headaches involved a shot of the opioid Demerol. Very quickly, Zumwalt says, she would get headaches if she didn't get her shot. Then she began having seizures, and her doctor considered stopping the medication.

"I didn't know I was addicted, but I just knew that it was like you were going to ask me to live in a world without oxygen," she says. "It was that scary."

Zumwalt didn't cut back. In fact, over two decades, the Sacramento, Calif., resident got an ever-increasing number of opioid prescriptions — all while working in corporate sales.

"I could show up at Xerox and put on a presentation, and I was high on Percodan," she recalls. "I mean, fully out of it. I don't know how many I had taken, but so many that I don't remember the presentation. And do you know that people didn't know?"

Her addiction worsened, eventually forcing her to take medical leave. Now sober for a dozen years, Zumwalt wrote a book about recovery called Ruby Shoes.

// Require.js is on the page (new Seamus) if (typeof requirejs !== 'undefined') { // Create a local require.js namespace var require_worker_pain_meds_20160113 = requirejs.config({ context: 'worker-pain-meds-20160113', paths: { 'pym': 'http://apps.npr.org/dailygraphics/graphics/worker-pain-meds-20160113/js/lib/pym' }, shim: { 'pym': { exports: 'pym' } } }); // Load pym into locale namespace require_worker_pain_meds_20160113(['require', 'pym'], function (require, Pym) { // Create pym parent var pymParent = new Pym.Parent( 'responsive-embed-worker-pain-meds-20160113', 'http://apps.npr.org/dailygraphics/graphics/worker-pain-meds-20160113/child.html', {} ); // Unbind events when the page changes document.addEventListener('npr:pageUnload', function (e) { // Unbind *this* event once its run once e.target.removeEventListener(e.type, arguments.callee); // Pym versions with "remove" if (typeof pymParent.remove == 'function') { pymParent.remove(); // Pym version without "remove" } else { // Unbind pym events window.removeEventListener('message', pymParent._processMessage); window.removeEventListener('resize', pymParent._onResize); } // Explicitly unload pym library require_worker_pain_meds_20160113.undef('pym'); require_worker_pain_meds_20160113 = null; }) }); // Require.js is not on the page, but jQuery is (old Seamus) } else if (typeof $ !== 'undefined' && typeof $.getScript === 'function') { // Load pym $.getScript('http://apps.npr.org/dailygraphics/graphics/worker-pain-meds-20160113/js/lib/pym.js').done(function () { // Wait for page load $(function () { // Create pym parent var pymParent = new pym.Parent( 'responsive-embed-worker-pain-meds-20160113', 'http://apps.npr.org/dailygraphics/graphics/worker-pain-meds-20160113/child.html', {} ); }); }); // Neither require.js nor jQuery are on the page } else { console.error('Could not load worker-pain-meds-20160113! Neither require.js nor jQuery are on the page.'); }

Her story highlights, among other things, the many challenges employers face in dealing with prescription drug abuse.

According to one study, prescription opioid abuse alone cost employers more than $25 billion in 2007. Other studies show people with addictions are far more likely to be sick or absent, or to use workers' compensation benefits.

When it comes to workers' comp, opioids are frequently prescribed when pain relievers are called for. How often doctors choose opioids varies by state; an analysis found the highest rates in Arkansas and Louisiana.

"The more professional stature you have, the less likely you are going to be forced into recovery, and the longer your addiction is likely to go on unchecked," says Patrick Krill, who directs a treatment program at the Hazelden Betty Ford Foundation that focuses on lawyers and judges. The legal profession has twice the addiction rate of the normal population, he says.

In December, the advocacy group National Safety Council released a survey showing 4 of 5 employers in Indiana said they've confronted painkiller abuse in the workplace.

"Many times they're showing up late to work because they can't find pills," says Dr. Don Teater, medical adviser for the council. "They're starting to have withdrawal symptoms. They know they can't work." He went from family physician in Clyde, N.C., to addiction specialist after seeing prescription opioids and heroin rip through his rural community.

Three-quarters of his patients have lost their jobs. Some manage to hide prescription drug abuse for years, he says, but it does affect brain function and productivity.

"They're not as sharp. They're not thinking as quickly," he says. "For people working in safety-sensitive positions, you know, driving the forklift or something, their reactions might not be as fast."

One of the biggest problems, Teater says, is that many employers aren't testing for prescription opioids.

"I'll be talking to 50 or 60 HR people, and I'll say, 'How many of you test for oxycodone?' And a third of the hands will go up maybe. And oftentimes I'll say, 'How many don't even know what you're testing for?' And a number of hands will go up."

According to Quest Diagnostics, a testing firm, only 13 percent of the roughly 6.5 million workplace drug tests screen for prescription painkillers.

Even federal government workers in public safety positions who are required to undergo periodic drug testing aren't currently tested for prescription opioids.

"Within federal agencies we don't test, so we can't see exactly what the positivity rate would be in prescription drugs," says Ron Flegel, director of workplace programs for the Substance Abuse and Mental Health Services Administration. "But we know from the private employers the percentage is quite high as far as people that are testing positive."

Flegel says in coming months, new rules will include prescription painkillers in federal drug testing.

Meanwhile, the tables have turned for Michele Zumwalt, the recovering addict. She now helps manage her husband's construction firm. "Through the years, we've seen lots of people with addictions," she says. "We can almost recognize it, you know, as employers."

They urge the workers to get into rehab, she says, and hope they turn around.

Copyright 2016 NPR. To see more, visit NPR.
Categories: NPR Blogs