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Girls And Older Adults Are Missing Out On Parks For Recreation

NPR Health Blog - Wed, 05/18/2016 - 5:01am

Teenage boys and men are more likely to use urban parks, a study finds, probably because the facilities cater to their interests.

Barry Winiker/Getty Images

Before I had a child, I only occasionally set foot in the many parks in our neighborhood. Now I spend so much time in them that I can tell you about every swing set, picnic table and unfenced patch of grass within a two-mile radius. Also the location and cleanliness quotient of every park restroom.

A study published Wednesday finds my own relationship with parks is part of a larger trend: Urban parks in the U.S. are largely geared toward the young, with far less appeal for adults, especially older ones. And that leaves on the table a big opportunity to use parks as a way to increase physical activity.

"You'd think that seniors would be retired and would have more time" to go to the park, but "they're not using the parks very much," says Deborah Cohen, a senior natural scientist at RAND and lead author of the study, which was published in the American Journal of Preventive Medicine.

Adults ages 60 and up made up only 4 percent of park-goers, even though they're 20 percent of the population.

While the potential health benefits of public parks have been cataloged, there's been less research on describing the nation's park infrastructure. Researchers at RAND Corp. wanted to get an idea of what's currently on the ground in cities with a population of more than 100,000. So they sent data collectors into 174 parks in 25 major cities, asking them to describe the facilities and conditions, and the demographics of users during a typical week during the spring or summer of 2014.

Parks, of course, varied from neighborhood to neighborhood. But looking across the entire survey sample, almost all had lawns and play areas. About half had outdoor basketball courts and baseball fields. But just 29 percent had a walking loop, and the percentage of parks with a dedicated exercise area or fitness zone was in the single digits.

Those basketball courts and swing sets are also the ones more likely to be used by kids and teens, so it's not a surprise that 38 percent of park users were children and 13 percent teens, though those demographic groups represent 20 percent and 7 percent of the U.S. population.

Breaking that down by gender, boys accounted for 60 percent of the time children spent on moderate to vigorous physical activity in the parks. Among teens, that figure was 68 percent.

Cohen says that disparity may be explained by a greater participation in park-based team sports like T-ball and basketball by males. Overall, 57 percent of park users were male.

There were also disparities in use by neighborhood income, with parks in high-poverty areas used less than in low-poverty ones, even though facilities were similar.

Parks represent an efficient, cost-effective way to improve public health, researchers say. "If you give people convenient, safe access to park space where they can do physical activity, they're more likely to do it," says Ross Brownson, a professor of epidemiology at Washington University in St. Louis. Parks also may offer a mental health benefit by exposing people to nature.

So how to attract more users? Provide more facilities aimed at older folks and people of all ages, for one. For example, localities are increasingly promoting the intergenerational use of parks by adding walking trails around playgrounds and ball fields, so parents can keep an eye on their kids while getting some exercise for themselves, says Andrew Mowen, a professor of recreation, park and tourism management at Penn State University.

The study found that more supervised activities like classes or organized sports and more marketing via banners and signs were associated with more hours of moderate to vigorous physical exercise in the parks. Brownson said it's important to target that to what's popular in a given community. "If it's soccer, animals, hunting and fishing, scenic beauty," park administrators need to tailor programs and outreach accordingly, he says.

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.
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Treating Opioid Addiction With A Drug Raises Hope And Controversy

NPR Health Blog - Tue, 05/17/2016 - 3:52pm
Treating Opioid Addiction With A Drug Raises Hope And Controversy Listen· 5:45 5:45
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May 17, 20163:52 PM ET Heard on All Things Considered

A man in Mount Airy, Md., shakes Suboxone pills from a bottle in late March.

Ricky Carioti/The Washington Post/Getty Images

Scientists and doctors say the case is clear: The best way to tackle the country's opioid epidemic is to get more people on medications that have been proven in studies to reduce relapses and, ultimately, overdoses.

Yet, only a fraction of the more than 4 million people believed to abuse prescription painkillers or heroin in the U.S. are being given what's called medication-assisted treatment.

One reason is the limited availability of the treatment. But it's also the case that stigma around the addiction drugs has inhibited their use.

Methadone and buprenorphine, two of the drugs used for treatment, are themselves opioids. A phrase you often hear about medication-assisted treatment is that it's merely replacing one drug with another. While doctors and scientists strongly disagree with that characterization, it's a view that's widespread in recovery circles.

Now, the White House is pushing to change the landscape for people seeking help. In his 2017 budget, President Obama has asked Congress for $1.1 billion in new funding to address the opioid epidemic, with almost all of it geared toward expanding access to medication-assisted treatment.

The White House is also highlighting success stories. At the National Prescription Drug Abuse and Heroin Summit held in Atlanta in March, Obama appeared on stage with Crystal Oertle, a 35-year-old mother of two from Ohio. Oertle spoke of her spiral into addiction, which began with prescription painkillers and progressed to heroin. She tried unsuccessfully to quit on her own several times, before being prescribed buprenorphine a year ago. "I personally couldn't get through the withdrawal symptoms," Oertle said in Atlanta. "I couldn't tough it out. I know some people can. I couldn't do it. This last time has been the most successful recovery for me."

Her experience isn't unique.

"I've seen people with opioid-use disorders go through inpatient treatment without medications time and time and time again, without ever being offered alternatives," says Michael Botticelli, director of National Drug Control Policy at the White House. "We wouldn't do that with any other disease. If one treatment failed for you, we'd say, let's look at other possible treatment options."

David Lidz runs the organization Ladders to Leaders in Hagerstown, Md., where he offers both beds and jobs for men transitioning out of drug treatment.

Meredith Rizzo/NPR

Botticelli says patients should consider the evidence for medication-assisted treatment and together with their doctors make a decision about what's best for them.

Methadone and buprenorphine have been tested in scores of clinical trials. Researchers have found that when combined with counseling, they significantly reduce opioid use and keep people in treatment longer.

"We have tons of experience with patients who remain in treatment for months and years, who do very well on relapse-prevention medicines," says Dr. Marc Fishman, medical director at Maryland Treatment Centers in Baltimore. He says among his patients, primarily young people, about half remain with the program six months into treatment. Studies have shown far worse outcomes for patients who detox without follow-up medications, with relapse rates topping 90 percent.

We Found Joy: An Addict Struggles To Get Treatment Listen
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Still, there are many people who stand by the so-called abstinence route — recovery without the use of medications. Their views are informed by personal experiences and deeply held beliefs about what constitutes true recovery.

For years, Juan Ramirez, 56, led a high-risk lifestyle to support his use of prescription painkillers. "When you start robbing drug stores and drug dealers because of your drug habit, your life is not working right," he says.

A friend told Ramirez about a doctor in Baltimore who prescribed Suboxone, a brand of buprenorphine. He liked the way Suboxone made him feel, so he would often exceed the dosage, buying pills from other patients so he wouldn't run out. He stopped using other narcotics and, overall, he felt more functional. Still, after three years of seeing the doctor, he never felt like he'd achieved full recovery. "I was still an addict," he says. "It was just legal."

Lidz runs a group home in Hagerstown, Md., for men who are moving from drug treatment back into daily life.

Meredith Rizzo/NPR

That line of thinking extends to some people whose mission is to help people in recovery, including David Lidz, a recovering alcoholic, who runs a group home in Hagerstown, Md. The home has 10 beds for men who are transitioning out of intensive drug treatment back into daily life. In addition to beds, Lidz offers the men work with his contracting business, refurbishing houses. The emphasis is on hard work, personal responsibility and purpose. It's what worked for Lidz in his recovery, but even he knows it doesn't work for everyone.

When he started his work as a recovery advocate, Lidz knew little about medication-assisted treatment and had yet to form an opinion about it. Soon, he started getting reports from the group home that someone's Suboxone had been stolen, or someone looked high, or that people were trading, selling and snorting Suboxone. "That to me just looks like heroin," Lidz says.

So he made a decision: He wouldn't accept anyone on it.

Today, that stance is threatening the group home and his business. "Now we've been told by clinical settings that we're essentially blacklisted, that they can't even mention our program if we won't take people on opiates, on Suboxone," Lidz says.

He worries it could lead to missed opportunities for people like Charles Testerman, who came to Lidz's group home after several months in drug treatment. Testerman describes his years of drug use as "doing everything to excess." He drank, smoked marijuana, and got hooked on prescription painkillers and later heroin. When he couldn't afford heroin, he bought Suboxone on the street, hoping it would help him stop using other drugs. It didn't work.

"I was doing Suboxone in the mornings, as well as Adderall to bring myself up. Then at night, I was taking Xanax, smoking weed and drinking, just to go to sleep every night," Testerman says. "It was just a constant cycle."

Charles Testerman (left) learns from David Gibney how to restore an early 19th century barn in Waynesboro, Pa.

Meredith Rizzo/NPR

Today, he has an apprenticeship with a master woodworker at a place called The Stoner Farm, Anglicized from Steiner, the name of the family who built the place. Testerman is working to restore an early 19th century barn there. "I feel great, happy to be out here doing this," he says. "It's just nice to wake up in the morning and not have to do anything to feel normal."

Testerman left an intensive drug treatment program and now lives in a group home run by Lidz.

Meredith Rizzo/NPR

Fishman, the addiction doctor in Baltimore, knows there are people like Testerman who find the strength to have what he calls a life-changing conversion without medications. But, he cautions, not everyone can do it, and it's not scalable. He wants to convince the doubters that medication-assisted treatment is the best tool available at the moment, and, in making his case, he's willing to acknowledge its limitations.

"This doesn't change my claim that it should be the standard of care," he says. "But we don't have the penicillin for addiction. These are not curative medications. In having a nuanced, thoughtful discourse with people who might disagree with us, acknowledging those limitations I think would make us more credible."

Copyright 2016 NPR. To see more, visit NPR.
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Insurers Leaving An Exchange May Still Sell Individual Plans

NPR Health Blog - Tue, 05/17/2016 - 12:04pm

"He's off the exchange but will sell you a plan anyway."

Jonathan McHugh/Getty Images/Ikon Images

When insurers pull out of the health law marketplaces, will customers buying plans outside those exchanges lose access, too? And do families have to meet two deductibles if each spouse has a separate insurance plan? Here are the answers.

I see story after story about insurance companies leaving some state health insurance exchanges, but does that mean they'll stop selling health insurance on the individual market altogether? Will these companies' policies still be an option for those of us who buy coverage off of the exchange since, for example, we don't qualify for subsidies?

An insurer's decision to stop selling plans on the marketplace doesn't necessarily mean it will stop selling individual coverage in that state altogether. This year, for example, Aetna stopped selling individual plans on the marketplaces in Kansas, Utah and Washington, D.C. But the company continues to sell individual policies outside the marketplaces in Kansas and Utah, said T.J. Crawford, a spokesman for Aetna. However, it stopped selling off-exchange plans in the District, which requires insurers selling on the individual and small group markets to offer their products on the exchange. A handful of other states require insurers to sell similar plans on and off the exchange.

Aetna last week announced that it intends to continue selling policies on the exchanges in at least 15 states. UnitedHealthcare and Humana, on the other hand, have said they expect to withdraw from a number of state exchanges but have not specified which ones yet. A spokesperson for UnitedHealthcare said that no one was available to comment on its plans, and Humana didn't respond to a request for comment.

Insurers have taken different approaches to date on offering individual coverage only on the exchange versus both on and off the exchange, said Paul Rooney, vice president for carrier relations at eHealth.com, which sells such plans outside the exchanges. No matter where they're sold, all individual plans have to meet health law standards, including covering the 10 essential health benefits. Although the plans are similar in many ways, provider networks may be broader in some off-exchange plans, said Rooney.

Since the Affordable Care Act passed, my employer won't allow me to cover my spouse because she has coverage through her employer. I have a family plan with a high deductible. Is there any provision in the law to link her policy and mine? We have met the family deductible and family out-of-pocket maximum on the plan that covers me and the kids. It doesn't seem fair that we would have to meet her deductible also.

There's no way to link your two policies under the health law. In order to pick the best coverage for your family between the plans offered by both employers, you need to consider several factors, including the premium, deductible and out-of-pocket maximum, and how those amounts change depending on which family members are covered under which policy.

In high-deductible plans, the kind that are typically linked to a health savings account, it's particularly important to consider how that family deductible works, said Tracy Watts, a senior partner at benefits consultant Mercer. If the plan has a $6,000 deductible, for example, it may be that the entire deductible must be satisfied before the plan starts to pay claims for any family member other than for preventive care. In contrast, a traditional plan with a family deductible of say, $3,000, might "embed" individual deductibles of $1,000 per family member within that total and begin paying benefits sooner.

If one family member is likely to need expensive care, running the numbers can be especially important. "If they have someone who they know is going to need coverage, it's important to make sure they're in most advantageous plan," Watts said.

Regardless of the amount of the family deductible, the maximum amount that any one person can be required to pay out-of-pocket is $6,850 in 2016.

It's worth noting that a growing number of employers are discouraging workers from covering spouses who have insurance available through their own jobs. In 2016, 7 percent of employers didn't offer coverage to workers' spouses who had insurance available elsewhere, and 44 percent said they were considering it, according to a survey by benefits consultant Aon Hewitt. Another 17 percent charged spouses extra if they had other coverage available, and 47 percent said they were considering extra charges.

Why can't consumers change health insurance every month if they want to, like they can with auto and homeowners insurance?

The issues for these types of insurance are not the same.

Most people buy or renew their health insurance during an annual open enrollment period and generally have to stick with that plan all year.

If people could switch health plans whenever they wished, there would be nothing to stop them from buying a plan with minimal coverage and a low premium, then trading up to a pricier, more generous plan if they got sick, said Penny Gusner, a consumer analyst at insure.com, a website that provides information about insurance and insurers, who may pay for placement or leads.

"It would destabilize the marketplace," Gusner said, since some insurers would end up paying for a disproportionate number of sick people.

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Email questions for future columns: KHNHelp@KFF.org. You can also follow Michelle Andrews on Twitter: @mandrews110.

Copyright 2016 Kaiser Health News. To see more, visit Kaiser Health News.
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Hollywood Jet Gives Fearful Fliers The Courage To Soar

NPR Health Blog - Tue, 05/17/2016 - 4:58am
Hollywood Jet Gives Fearful Fliers The Courage To Soar Listen· 7:04 7:04
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May 17, 20164:58 AM ET Heard on Morning Edition

Ron Nielsen, a retired airline pilot, tells his class of fearful fliers in Southern California that crying can be a useful emotional release. If that's what they need to do, he tells them, "let 'er rip!"

Courtesy of Air Hollywood

The jet sitting at Air Hollywood's studio near the Burbank airport in Southern California was once the charter plane of the Los Angeles Lakers. These days, it serves a much different role — mostly as the set for movies and TV commercials.

But the group walking on board the day I recently visited wasn't there to film a scene. They were part of a two-day class for fearful fliers.

For participant Ronnie Michel, it was the first time in six years that he'd seen the inside of a plane.

"You hear the plastic shaking, the weird noises," he noted. "I can see the top of people's heads sitting in front of me. It's all familiar."

It reminded him of a previous experience — a flight he was once supposed to take from New York.

"I was about to board the plane — and I turned around and I bought a ticket for the Amtrak and took it all the way back to Los Angeles," Michel told me. "And I haven't been on a plane since."

Each person aboard that sound stage plane had at one time or another missed out — missed a vacation abroad, or a family reunion, or a job interview far from home. If it involved boarding a plane, each one had taken pains to avoid it — and wished they didn't have to. They regretted it enough to spend $500 each to enroll in a program on a sound stage — FearlessFlight at Air Hollywood.

Several of the people who'd signed up didn't show that day, which I'm told is pretty typical. One guy has signed up for every class in the last two years — but has yet to attend.

Ron Nielsen, better known as Capt. Ron, runs the show. He's a retired airline pilot who also flew in Vietnam. He's calm and lighthearted — perfect for this role. He has worked with fearful fliers for 29 years.

"I find the shame about not being able to fly often exceeds the fear itself," he told the class, now seated as "passengers" inside the grounded plane.

Nielsen did all he could to ease their fear — starting with a lot of information about aviation. After running through the mechanics of a jet engine, he moved on to everyone's favorite topic: turbulence.

Just as he muttered the word, the airplane cabin started to shake and everyone inside jumped. Though the plane seemed very real from the inside, it was actually sitting on a platform atop compressed bags of air, much like a mattress. The shaking wasn't from fancy hydraulics; Rob Shalhoub of Air Hollywood was standing next to the plane, jumping up and down.

"Oh, I'm just bouncing on the ramp," Shalhoub told me later.

Back inside, Koren Owens said all that movement was increasing her anxiety.

"My legs are a little shaky and weak," Owens said. "It doesn't feel good, no. And it's reminding me that tomorrow, I'm really going to be going through this."

Day 2 of the Air Hollywood training includes an actual Southwest Airlines flight from Burbank to Oakland.

Mikki Yuthas, a nervous 15-year-old who had driven down from Portland with her parents to take the class, was dreading Day 2, too.

"I'm thinking about how high off the ground we're going to be," Yuthas told me, "and how I'm enclosed and I can't get out."

The 727 jet simulator sits in a sound stage near the Burbank Hollywood airport in Southern California.

Courtesy of Air Hollywood

"That's a theme that you hear time and again," Dr. Dave Baron, the interim chair of the Department of Psychiatry at the Keck School of Medicine at the University of Southern California, told me. He has lots of experience working with patients afraid of flying. The core of the fear is a deep sense of being out of control.

"It's way beyond a fear," Baron explained. "This is real — I mean, their heart races; they can't get their breath. It's absolute terror. And the next thing you know: 'I've got to get off the plane.' "

But most of the group that day was committed to hanging tough. The next morning, when the Fearless Flight group convened in the Hollywood Burbank Airport terminal, Owens clutched her boarding pass.

"I didn't sleep great," she admitted. "I tried to put it out of my head, but — I mean, it's not terrible. But it's not great. I'm not dying right now. But I'm nervous."

Capt. Ron told his class to just accept whatever they were feeling.

"I do have a big thing about crying," he told them. "Inevitably, I have somebody who says, 'I don't want to cry.' I say, 'Let 'er rip, man!' Honest to God, I cry all the time. It's a release. So do not bottle that up."

There was a lot of nervous banter among most members of the group. A couple others sat down right away and kept to themselves, alert to every announcement blaring over the intercom.

Moments later, the Southwest 737 pulled in and passengers headed down the gangway.

But just before she boarded, one woman in the class urgently pulled Capt. Ron aside. Everyone in the group turned to see what was wrong. She wanted to leave. Nielsen tried to talk her through what she was feeling.

"Just give me one inner-thought right now," he asked her. "Why do you want to run?"

She'd already made up her mind. She thanked the group and abruptly left the waiting lounge and the airport.

Meanwhile, inside the plane, a crowd of passengers wedged suitcases into every crevice. It was clearly going to be a full flight. We found our seats and buckled in, but the member of the Air Hollywood class seated right next to me seemed on edge.

His hands shook, and he kept looking around the cabin. Capt. Ron tried to get his attention from across the aisle, but the nervous passenger was beyond listening.

Suddenly, he, too, unbuckled his seat belt and walked off the plane.

Moments later, the door finally closed and our jet pushed back and headed for the runway. No more turning back.

As it happened, the flight was turbulent from the moment we took off. Some passengers grasped their armrests. Even for seasoned travelers, this was choppy.

But once we get above the clouds, the fearful fliers started to relax. Mikki Yuthas chatted with her dad, and Koren Owens laughed at Capt. Ron's jokes.

"Just sort of let the fear wash over and I'm remembering that I used to love to fly," another class member — Alex — told me. (For professional reasons he asked us not to use his last name.)

Alex had one of those foam travel neck pillows around his neck and felt calm enough to request an apple juice from the flight attendant.

"Hands are pretty still," he noted. "I'm not sweating. Should've done [this] sooner."

An hour later, the plane descended and we were in Oakland. As they stepped off the jetway, members of the class hugged and shared stories from the flight — finally able to release years of pent-up anxiety.

"I haven't been able to do this and I've missed opportunities," Yuthas said. "And now I can finally just get on a plane and not be like, constantly stressed and worried about it."

She was ready to hop on the flight home to Portland, she told her dad, John Bizjak and me. He put his arm around her.

"It was like her old self flying," he told me, with relief.

For everyone returning to Southern California that day, boarding the return flight was surprisingly easy. Suddenly, getting on a plane had become routine. It was just another take-off, another landing.

Nielsen, the man who piloted them through their fear, is the first to say that Air Hollywood's Fearless Flight program isn't a cure-all. Their next flight without him onboard would be another challenge, he told me.

But Baron, the USC psychiatrist, said the members of the class had taken a huge step, by learning techniques that gave them more of a sense of control in those situations "as opposed to having it be an emotional, runaway train."

For Nielsen, the next step is pretty simple.

"Sooner or later, you've got to get on the damn plane," he said. "And so people ask me, 'What's the most important thing for me to do to get over my fear?' I say, 'Book a flight.' "

Copyright 2016 NPR. To see more, visit NPR.
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Who Should Be Worried About Zika And What Should They Do?

NPR Health Blog - Tue, 05/17/2016 - 4:56am
Who Should Be Worried About Zika And What Should They Do? Listen· 3:43 3:43
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May 17, 20164:56 AM ET Heard on Morning Edition

In some parts of the country, this might require bug spray.

Steven Errico/Getty Images

Mosquito season is just getting underway. And many parts of the country have mosquitoes that could potentially transmit Zika.

Health officials expect to see cases here in the next few weeks. So we decided to figure out who needs to break out the bug spray and what other precautions they should take.

By now, you've probably heard that pregnant women — and those trying to get pregnant — face the biggest danger when it comes to Zika. The virus can cause devastating brain damage in fetuses at any point during a pregnancy.

That's far different from how the disease affects people who are not pregnant. For them, symptoms are usually mild. There can be a rash, joint pain and a fever. Many people won't even know they're infected, according to the Centers for Disease Control and Prevention.

But does that mean an expectant mother in New York City or San Francisco needs to be just as concerned as one in Houston?

"Absolutely not," says Thomas Scott, an epidemiologist at the University of California, Davis, who has been studying where Zika is most likely to appear in the U.S.

Although a map from the Centers for Disease Control and Prevention divides the continental U.S. into two zones, Scott says there are actually three zones, based on the risk of having local transmission of Zika this summer:

  • Extremely low-risk zone: This is the northern half of the country, from northern New England across the north Midwest to the Pacific Northwest. These states don't have the main mosquito — Aedes aegypti — that can spread the virus. Pregnant women can relax in this zone.
  • High-risk zone: "What we're talking about, the really risky areas are Florida and the Gulf states into Texas," Scott says. These regions have high densities of A. aegypti mosquitoes. And they've had outbreaks of two viruses related to Zika: dengue and chikungunya.
  • Low-risk zone: This is the rest of the country, including the Southeast, the Mid-Atlantic states — all the way up to New York City and Long Island — and the Southwest.

Scientists may have found A. aegypti mosquitoes in parts of these states, but there are far fewer of the mosquitoes there. So the risk this summer is very low in places like Washington, D.C., Atlanta and San Francisco, Scott says.

Still, though, it's possible.

So if his wife was pregnant and living in one of these low-risk zones, he would have her start taking precautions now, just to be safe.

"You just never know," Scott says. "The outcome of [getting infected] is really tragic. And so, you know, I think you want to make sure that you avoid that."

To do that, pregnant women need to start avoiding mosquito bites, says Scott Weaver, who studies Zika at the University of Texas Medical Branch in Galveston.

They should start wearing long-lasting insect repellent, long sleeves and long pants, even during the daytime. "These are daytime biting mosquitoes, and they're mosquitoes that like to enter peoples' home," he says.

And they should avoid travel to the high-risk zone in the U.S., says Dr. Karin Nielsen, a pediatric infectious disease expert at the University of California, Los Angeles.

"I think pregnant women should stay away from areas that have had dengue outbreaks in the continental U.S.," which includes the Florida Keys, Houston and the border of Texas and Mexico, she says. "Zika will go where dengue has been, to some extent."

Goats and Soda How Contagious Is Zika?

These precautions also apply to two other groups: pregnant women's partners, because Zika can be transmitted sexually; and people with suppressed immune systems, because they could have more severe complications from a Zika infection.

Another good strategy is to figure out if your community has A. aegypti mosquitoes, Weaver says. "Check with your local mosquito-control district and see if they've detected A. aegypti near your home," Scott says.

If they have, clean up your yard. Keep it free of containers that hold standing water, where mosquitoes can breed. "It can be something as small as a bottle cap and have enough water for mosquito larvae to develop," Weaver says.

Finally, know the enemy. A. aegypti mosquitoes have white stripes on their legs and a marking in the shape of a lyre on their backs. Learn to recognize them. And stay away.

Copyright 2016 NPR. To see more, visit NPR.
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As Supreme Court Sends Back Birth Control Case, Both Sides Claim Victory

NPR Health Blog - Mon, 05/16/2016 - 3:55pm

Supporters of insurance coverage for birth control rallied outside the U.S. Supreme Court in March.

Jacquelyn Martin/AP

When it comes to the issue of religious rights versus no-cost contraception, the only thing the Supreme Court could agree on was not to decide.

In an unsigned opinion issued Monday, the court sent a series of cases back to a raft of federal appeals courts, with instructions for those courts and the parties in the lawsuits to try harder to work things out. "The Court expresses no view on the merits of the cases," the opinion said.

At issue is the extent to which religiously affiliated employers (such as universities or hospitals) need to participate in the requirement under the Affordable Care Act for most employer health plans to provide no-cost contraception for women.

The government made several changes to the rules over the past four years in an attempt to accommodate the religious employers' objections while still ensuring that female employees would get contraceptive coverage.

But dozens of religious nonprofit employers sued anyway, claiming that even the act of notifying the government of their objections (which would, in turn, trigger a requirement for the government to arrange coverage) made them "complicit" in providing a service they see as sinful.

The court's opinion, and an accompanying order on several similar cases that were awaiting a decision on whether the high court would take them up, erased all the lower appeals court rulings, all but one of which had sided with the government.

The opinion and order appeared at first glance to put at risk coverage for contraceptives for tens of thousands of employees of the organizations that filed suit.

However, the court made clear that because the employers who have sued have already in effect notified the government of their objections, the government can rely "on this notice, to the extent it considers it necessary, to facilitate the provision of full contraceptive coverage going forward."

At the same time, however, the opinion said the government "may not impose taxes or penalties on petitioners for failure to provide the relevant notice."

The goal, the justices wrote, is that both sides "should be afforded an opportunity to arrive at an approach going forward that accommodates petitions' religious exercise while at the same time ensuring that women covered by petitioners' health plans 'receive full and equal health coverage, including contraceptive coverage.' "

Both sides in the dispute claimed at least a partial victory.

"From our point of view this is a win for religious liberty," said Mark Rienzi, a senior counsel for the Becket Fund for Religious Liberty, which is representing the Little Sisters of the Poor, one of the groups that sued the government. "The government can find ways to give out contraception without hassling nuns."

But at the same time, said Louise Melling, deputy legal director of the Americans Civil Liberties Union, "the opinion states clearly the need for women to receive full and equal coverage."

Contraceptive advocates also pointed to a concurring opinion from Justices Sonia Sotomayor and Ruth Bader Ginsburg that stressed that the decision should not be read as approving coverage strategies that make it harder for women to get the benefits.

"Requiring standalone contraceptive-only coverage would leave in limbo all of the women now guaranteed seamless preventive-care coverage under the Affordable Care Act," they wrote. "And requiring that women affirmatively opt into such coverage would 'impose precisely the kind of barrier to the delivery of preventive services that Congress sought to eliminate.' "

It remains unclear what the lower courts might do. In an effort to break what was clearly a 4-4 deadlock, the court in March asked each side for supplemental material outlining potential compromises. The decision Monday referred to those new briefs as suggesting that providing contraceptive coverage without requiring notice from religious employers "is feasible."

But Sotomayor and Ginsburg, in their concurring opinion, noted that "the Courts of Appeals remain free to reach the same conclusion or a different one on each of the questions presented by these cases."

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

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

New York Aims To Become The Next State To Toss The Tampon Tax

NPR Health Blog - Mon, 05/16/2016 - 3:24pm
New York Aims To Become The Next State To Toss The Tampon Tax Listen· 3:59 3:59
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May 16, 20163:24 PM ET Heard on All Things Considered

From

In some New York City schools, the bathroom dispensers provide sanitary products for free.

Richard Yeh/WNYC

Feminine products are having a moment. With some calling for a red wave to take the taboo out of menstruation, politicians across the country are trying to make tampons and sanitary pads as affordable and accessible as possible.

Five states have eliminated sales taxes on pads and tampons: New Jersey, Pennsylvania, Massachusetts, Maryland and Minnesota. In New York, a bill awaits the governor's signature, and other efforts to improve access to sanitary products are underway.

The bill would reclassify pads and tampons so they're exempt from the 4 percent state sales tax, like many other items on pharmacy shelves, including bandages, swabs and contraceptives. The bill passed both houses of the legislature, and Gov. Andrew Cuomo's media representative has spoken positively about it.

In New York City, a bill would provide free sanitary supplies in schools, homeless shelters and prisons. Council speaker Melissa Mark-Viverito backs the bill, and the mayor has expressed support for the cause.

New York lawmakers in Congress are working on the issue, too. Rep. Grace Meng, D-Queens, has introduced the Fund Essential Menstrual Products Act of 2015 (also known as the FEM Products Act). It would make feminine hygiene products eligible for purchase with pretax Flexible Spending Accounts. And Rep. Carolyn Maloney, D-Manhattan, has asked the National Institutes of Health to research the safety of certain fibers and chemicals used in the products.

As is so often the case, politics is catching up with pop culture. Although menstruation management has long been a favorite topic among comedians including Tina Fey and Key & Peele, tampon advertisements now mock the euphemistic ads of yore, and period starter kits are being marketed with cheeky YouTube videos.

That may help make it easier for proponents of the legislation to push ahead. "Everyone's talking about this inequity," says New York Assembly Member Linda Rosenthal, who introduced the state tax exemption bill.

At the High School for Arts and Business in Queens, a simple machine may be a game-changer. It has dispensed free tampons and pads since September.

Shots - Health News Why 2015 Was The Year Of The Period, And We Don't Mean Punctuation

"It keeps me from missing class, in case I need one," says sophomore Emily Torres. "I don't have to worry about accidents. It's always there if I need it."

The school is one of 25 around the city piloting the dispensers this school year. Previously, students had to get tampons or pads from the school nurse.

"You go to the nurse's office when you're sick," says City Council Member Julissa Ferreras-Copeland, has advocated for free menstrual supplies in all schools. "These girls aren't sick. Getting your period just says that you're healthy."

Principal Ana Zambrano-Burakov thinks making it easier for girls to get these products has improved class attendance.

"I have heard sometimes girls stay home because they don't have the money to buy what they need, and that's no longer the case," she says. "I just want girls to stay in school and do well, and we're going to support them no matter what."

Rosenthal isn't sure exactly where the momentum is coming from. When she introduced her bill last year it got nowhere. Even this year, despite the unanimous support, she said the legislative discussion was awkward for some.

"I used the words 'period' and 'blood' and they were shifting in their chairs," she says. "Some couldn't look at me because I was saying these words."

As High School for Arts and Business student Ashley Celik might put it: that's on them.

"Sometimes when guys overhear us, they're like, 'Omigod! Gross! Keep it to yourself!" she said. "Of course we're going to talk about it. It's something normal. You shouldn't be telling us we shouldn't be talking about it because it's awkward for you."

This story is part of a reporting partnership with NPR, WNYC and Kaiser Health News.

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

The Power Of Genes, And The Line Between Biology And Destiny

NPR Health Blog - Mon, 05/16/2016 - 1:45pm
The Power Of Genes, And The Line Between Biology And Destiny Listen· 37:10 37:10
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May 16, 20161:45 PM ET Heard on Fresh Air

Roy Scott/Ikon Images/Getty Images

As researchers work to understand the human genome, many questions remain, including, perhaps, the most fundamental: Just how much of the human experience is determined before we are already born, by our genes, and how much is dependent upon external environmental factors?

Oncologist Siddhartha Mukherjee tells Fresh Air's Terry Gross the answer to that question is complicated. "Biology is not destiny," Mukherjee explains. "But some aspects of biology — and in fact some aspects of destiny — are commanded very strongly by genes."

The degree to which biology governs our lives is the subject of Mukherjee's new book, The Gene. In it, he recounts the history of genetics and examines the roles genes play in such factors as identity, temperament, sexual orientation and disease risk.

Additional Information: More With Siddhartha Mukherjee Author Interviews An Oncologist Writes 'A Biography Of Cancer'

Mukherjee notes that genetics is fundamentally changing our understanding of countless diseases, including schizophrenia and cancer. "We used to think of disease as something that happened to us," he says. "Genetics allows us to really begin to think of disease as something that happens as a result of us interacting with the environment. ... Not all, but many, many [diseases] are acutely dependent on the intersection between genes and the environment."

Interview Highlights

On understanding how some diseases are more genetic than we originally thought

There's a spectrum, so I'll start with one end of the spectrum and work my way to the other end. So let's start with cystic fibrosis or Huntington's disease, where we know that the influence of genetics is extremely strong, almost autonomous. This means that if you inherit the abnormal version, or the mutated version, for one of these two diseases, the chances that you will have that disease are very high. In genetics we use a word for this called "penetrance," these diseases are highly penetrant.

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An Intimate History

by Siddhartha Mukherjee

Hardcover, 592 pages |

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In the middle somewhere are diseases like diabetes or heart disease. Here there's still a powerful influence of genes. In fact, we know some of these genes, but it's an interaction between multiple genes and the environment.

Then, on the far end of the spectrum there are things that one might imagine, things like infectious disease where ... there's clearly an influence of genes. We now know that if you have certain genetic combinations or if you inherit certain genes, your susceptibility to HIV, for instance, might change, or your susceptibility to influenza might change, even though these are infectious pathogens. But these lie in sort of a different area, where the interaction between you and the pathogen, or you and the environment is much, much more acute.

On how genetics is changing how we think about and treat cancer

There's a substantial degree of reorganization in the way we fundamentally think about cancer that's going on right now, some of it related or a large part of it related through genetics. If you look at the mutations in individual cancers, you might find actually that a lung cancer carries a mutation that it shares with, let's say, breast cancer, or it shares a mutation that it shares with leukemia.

The question that's being asked right now in the field, which is an important question, is ... should we reorganize this old anatomical classification of cancer, you know, lung cancer, breast cancer, and base it a little bit [more] on a kind of mixed classification? Yeah, you say "breast cancer, which has these following mutations."

My overall impression is that the anatomical classification isn't going to go away. I think there are very important things that the anatomy determines — there are genes that are particular to breast cancer, there are genes that are particular to lung cancer. But it's going to be vastly refined, and we're seeing this already with genetics. So we're going to say, "lung cancer, but with genetics or genes that share some things with leukemia." We might, in fact, treat these two cancers similarly.

On targeting pathways of cancer

The simple analogy that I like to make is, we now know from cancer that even when a single gene is mutated, it rarely causes cancer. There's some instances, but it rarely causes cancer. You need multiple mutated genes in a single cell for it to become cancerous, and these mutated genes make products, proteins, and they co-opt the normalcy of a cell, and they kind of create a kind of whisper campaign, in which they co-opt the behavior of the cell, and now the cell begins to behave abnormally, divide abnormally, metabolize abnormally, ultimately leading to cancer.

The idea of a pathway is that if you think of these individual mutations by themselves, you can think that there's infinite numbers of combinations, in infinite different ways. One person has one combination, another person has another, but the point here is that what I've called a "whisper campaign," the internal network of these is often quite common between diverse individuals. And so rather than focusing on individual mutations, which can be very diverse and can cause us to get confused, we can focus on ... the core things, core networks, as it were, that are leading the abnormal behavior of a cancer cell, and target that using a drug.

On the new technology that allows doctors to make changes to cells

Making genetic changes in cells used to be very complicated. We used to be able to use viruses and deliver some genes into the cells. We used to be able to make mutations by exposing cells to, for instance, X-rays. But if you were to ask me 10 years ago, "Can you change this one particular gene in a cell?" I would say, "I could do it, but it's pretty hard to do."

Siddhartha Mukherjee is a cancer physician and researcher. His previous book, The Emperor of All Maladies: A Biography of Cancer, won a Pulitzer Prize in 2011.

Scribner

What's happened in the last five years [is] ... this technology has allowed us, in an astonishing way, to go into a normal cell or a cancer cell, even potentially an embryonic stem cell, and essentially directionally or intentionally make a mutation in a single gene, in an intentional manner.

I've likened this technology to saying, you know, it's like saying if you imagine the human genome as a vast encyclopedia ... what this technology allows us to do, essentially, is to go into that 66 entire sets of the Encyclopaedia Britannica and identify one word in that and change that word and leave most of the rest of the encyclopedia untouched. I'm saying "most of the rest," because there are still some collateral effects. ...

But what it allows you to do is you can erase one word and replace it with a slightly different word. That's how powerful the technology is, and so therefore you could now ask me, which you couldn't ask me five years ago, "Is it easy to make a directional or intentional change in a cell?" The answer, I would say, "infinitely easier today."

On the ethical considerations related to working with the human genome

The biggest ethical questions are should we be tampering with the human genome when we don't know very much about it still? Should we be changing human genes? And that leads to the question of what is disease? What is a genetic disease?

In Gene, I offer up a simple formulation that we might be able to think about ... one question you might think about is, "We're going to change some genetic material — are we sure that the benefits outweigh the risk? Is there truly extraordinary suffering associated with that disease?" ...

The phrase "extraordinary suffering" ... one person's extraordinary suffering [might not be] another person's extraordinary suffering, but at least we can use the word "extraordinary" to say that this is not a casual technology, we shouldn't be using this, obviously, to change the shape of eyes or the color of hair and so forth.

On how far science has come in isolating a "gay gene"

If you take identical twins, male twins, the chances that these male twins will share a sexual orientation is much higher than siblings, for instance. Now, what does that tell us? That tells us that there may be genetic determinants, because identical twins have exactly the same genome, there may be genetic determinants that determine one's sexual orientation. That number, how much they share, is not 100 percent.

So in other words, if one twin is gay, the other twin will not necessarily be gay. It's not 100 percent exactly the same, so we know that either genes or inter-uterine exposures, or some other factors, environments, have a powerful effect on this — society, culture has powerful effects on this. But we know, also, that there must be at least some genes involved, and if you look carefully at the patterns, it's clear that ... it's not one single "gay gene," that probably multiple genes are involved. I don't even like that term, "gay gene," I think it's very misleading as an idea. It's a gene that influences sexual preference. Of course, most of this work has been done in males. There's very, very little evidence in females.

We know there's some genetic determinants ... that are involved. When people have gone to look for those genetic determinants, the hunt has come up quite not so clear. ... The summary is, basically, that thus far we have not found, as I said, I don't like the word or the phrase, we have not found a "gay gene," and it's unlikely that we'll find one. ... Like many phenomena in human identity, there will be multiple genetic determinants interacting with environments, but it's very important to be clear about these ideas, because otherwise we fall into language that's all incorrect and wrong, and then you just foster nonsensical controversy.

To hear more from Terry Gross' conversation with Siddhartha Mukherjee, including Mukherjee's take on epigenetics, the BRCA1 gene and his family history of schizophrenia, click the "listen" link at the top of the page.

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

Despite $10B 'Fix,' Veterans Are Waiting Even Longer To See Doctors

NPR Health Blog - Mon, 05/16/2016 - 4:46am
Despite $10B 'Fix,' Veterans Are Waiting Even Longer To See Doctors Listen· 10:20 10:20
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May 16, 20164:46 AM ET Heard on Morning Edition

"Some days I wake up and go, 'Am I wasting time, when I could be on chemotherapy or getting a surgery?' " asks Tony Lapinski, a Montana veteran who worries about what is causing his severe back pain.

Michael Albans for NPR

Many veterans are still waiting to see a doctor.

Two years ago, vets were waiting a long time for care at Veterans Affairs clinics across the country. At one facility in Phoenix, for example, veterans waited an average of 115 days for an appointment. Adding insult to injury, some VA schedulers were told to falsify data to make it look like the waits weren't that bad.

The whole scandal ended up forcing the resignation of Eric Shinseki, secretary of the Department of Veterans Affairs at the time.

Congress and the VA came up with a fix: Veterans Choice, a $10 billion program that was supposed to give veterans a card that would let them see a non-VA doctor if they were more than 40 miles away from a VA facility or they were going to have to wait longer than 30 days for a VA provider to see them.

There was a problem, though. Congress gave the VA only 90 days to set up the system. Facing that extremely tight time frame, the VA turned to two private companies to administer the program and help veterans get an appointment with a doctor and then work with the VA to pay that doctor.

Although the idea sounds simple enough, the fix hasn't worked out as planned. Wait times have gotten worse — not better. Compared with this time last year, there are 70,000 more appointments that took vets at least a month to be seen.

The VA says there has been a massive increase in demand for care, but it's apparent the problem has more to do with the way Veterans Choice was set up. The program is confusing and complicated. Vets don't understand it, doctors don't understand it, and even VA administrators admit they can't always figure it out.

Veterans Face Delays And Worry

The problems are evident in Montana, which has more veterans per capita than any state except Alaska.

This winter, when Montana Sen. Jon Tester sent his staff to meet with veterans across the state, Bobby Wilson showed up at a session in Superior. Wilson, a Navy vet who served in Vietnam, is trying to get his hearing aids fixed.

But he says he is mired in bureaucracy. "The VA can't do it in seven months, eight months? Something's wrong," he says. "Three hours on the phone," trying to make an appointment. "Not waiting," he says, "talking for three hours trying to get this thing set up for my new hearing aids."

Tony Lapinski, a former aircraft mechanic with the Air Force, has waited for answers on the phone with Health Net, one of the two contractors the VA selected to help Veterans Choice patients.

"You guys all know the Health Net piano?" he says. "They haven't changed the damn elevator music in over a year!" That elicits knowing chuckles from the audience. In an interview later, he says, "They are the nicest boiler-room telemarketers you have ever spoken to. But that doesn't get your medical procedure taken care of."

Lapinski has an undiagnosed spinal growth, and he is worried. "Some days I wake up and go, 'Am I wasting time, when I could be on chemotherapy or getting a surgery?' " he says. "Or six months from now when I still haven't gotten it looked at and I start having weird symptoms and they say, 'Boy, that's cancer! If you had come in here six months ago, we probably could have done something for ya, but it's too late now!' "

Lapinski kisses his wife, Michelle, at their home in Superior, Mont.

Michael Albans for NPR

Lapinski finally got to a neurosurgeon, but he didn't exactly feel like his Choice card was carte blanche. Doctors, it turns out, are waiting, too — for payment, he says.

"You get your procedure done, and you find out that two months later the people haven't been paid. They have got $10 billion that they have to spend, and they are stiffing doctors for 90 days, 180 days, maybe a year!" says Lapinski. "No wonder I can't get anyone to take me seriously on this program."

He says he gets it. He used to do part-time work fixing cars, and he would still take jobs from people who had taken more than 90 days to pay him or bounced a check. But he did so reluctantly.

"I had a list of slow-pay customers," he says. "I might work for them again, but everybody else came before them. So why would it be any different with these health care professionals?"

Hospitals, clinics and doctors across the country have complained about not getting paid, or getting paid very slowly. Some have just stopped taking Veterans Choice patients altogether, and Montana's largest health care network, Billings Clinic, doesn't accept any VA Choice patients.

Not cool, Tester says of Health Net and other contractors.

"The payment to the providers is just laziness," he says. "I'm telling you, it's just flat laziness. These folks turn in their bills, and if they're not paid in a timely manner, that's a business model that'll cause you to go broke pretty quick."

The VA now admits the rushed time frame led to decisions that resulted in a nightmare for some patients.

Health Net declined to be interviewed for this story. But in a statement, the company says the VA has recently made some beneficial changes that are helping to streamline Veterans Choice. For example, the VA no longer demands that a patient's medical records be returned to VA before it pays the bill.

Meanwhile, though, veterans continue to wait. "If I knew half of what I knew now back then when I was just a kid, I would've never went in the military," says Wilson. "I see how they treat their veterans when they come home."

Scheduling Lags Also Irk The Doctors' Offices And The VA

On the other side of the coin, doctors are frustrated in dealing with another government health care bureaucracy.

In Gastonia, N.C., Kelly Coward, a surgery scheduler at Carolina Orthopaedic & Sports Medicine, dials yet another veteran with bad news.

"I'm just calling to let you know that I still have not received your authorization for Health Net federal. As soon as I get it, I will give you a call and let you know that we have it and we can go over some surgery dates," she tells a veteran.

The practice sees about 200 veterans. Dealing with Health Net has become a time-consuming part of her job.

"I have to fax and re-fax, and call and re-call. And they tell us that they don't receive the notes. And that's just every day. And I'm not the only one here that deals with it," she says.

Carolina Orthopaedic's business operations manager, Toscha Willis, is used to administrative headaches. They're part of the deal with health care, she says, but she's never seen something like this.

It takes "multiple phone calls, multiple re-faxing of documentation, being on hold one to two hours at a time to be told, 'We don't have anything on file,' " she says. "But the last time we called about it, they had it, but it was in review. You know, that's the frustration."

It can take three to four months just to line up an office visit.

The delays have become a frustration within the VA, too. Tymalyn James, a nurse care manager at the VA clinic in Wilmington, N.C., says Choice has made the original problem worse. When she and her colleagues are swamped and refer someone outside the VA, it's supposed to help the veteran get care more quickly. But James says the opposite is happening.

"The fact is that people are waiting months and months, and it's like a — we call it the black hole," she says. "As long as the Choice program has gone on, we've had progressively longer and longer wait times for Choice to provide the service, and we've had progressively less and less follow-through on the Choice end with what was supposed to be their managing of the steps."

The follow-through is lacking in two ways. The first is the lengthy delay in approving care. And after that's finally resolved, there's a long delay in getting paid for the care.

At least 30 doctors' offices across North Carolina are dealing with payment problems, some that have lasted more than a year.

Carolina Orthopaedic's CEO Chad Ghorley says his practice is getting paid after it provides the care. It's the lengthy delay on the front end that puts a burden on the staff and, he worries, puts veterans at risk. He's a veteran himself.

"The federal government has put the Band-Aid on it, when there's such a public outcry to how the veterans are taken care of, all right?" he says. "Well, they've got the Band-Aid on it to get the national media off their backs. But the wound is still open, the wound is still there."

Those experiences for both veterans and providers are typical. Congress is now working on a solution to the original solution: A bill is expected to clear Congress by the end of the month.

This is part of a collaboration with NPR's Back at Base project, local member stations and Kaiser Health News.

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

Suddenly Paralyzed, 2 Men Struggle To Recover From Guillain-Barre

NPR Health Blog - Mon, 05/16/2016 - 4:44am
Suddenly Paralyzed, 2 Men Struggle To Recover From Guillain-Barre Listen· 6:41 6:41
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May 16, 20164:44 AM ET Heard on Morning Edition NPR YouTube

For Tim Goliver and Luther Glenn, the worst illness of their lives started in the same way — probably after having a stomach bug.

Tim was 21 and a college student at the University of Michigan. He was majoring in English and biology and active in the Lutheran church. "I was a literature geek," says Tim. "I was really looking forward to my senior year and wherever life would take me."

Luther was in his 50s. He'd spent most of his career as a U.S. military policeman and was working in security in Washington, D.C. He'd recently separated from his wife and had just moved into a new house with his two daughters, who were in their 20s.

Both men recovered from their stomach bugs, but a few days later they started to feel sluggish.

"Here we are trying to unpack, prepare ourselves for new life together, and I'm flat-out dead tired," says Luther. He fell asleep in the car one morning and never made it out of the garage. Then he fell in the bathroom.

For Tim, it started to feel like running a marathon just to lift a spoonful of soup. One morning, he tried to comb his hair and realized he couldn't lift his arm above his shoulder. "At that moment I started to freak out," he says.

Both men got so weak that their families had to wheel them into the emergency room in wheelchairs. They got the same diagnosis: Guillain-Barre syndrome, a neurological disorder that can leave people paralyzed for weeks.

People who come down with Guillain-Barre typically have had some sort of illness a few days or weeks before, like the flu, says Dr. Ken Gorson, a neurologist at Tufts School of Medicine and St. Elizabeth's Medical Center in Boston. He's on the medical advisory board of GBS/CIDP Foundation International, which is dedicated to Guillain-Barre syndrome.

Luther Glenn developed Guillain-Barre syndrome after coming down with a stomach virus in 2008. He's still dealing with the consequences.

Meredith Rizzo/NPR

In many cases the trigger is a bacterial infection like Campylobacter jejuni, which sometimes contaminates undercooked chicken. In super-rare cases, people have developed Guillain-Barre after getting certain vaccines. The patient gets well, and then, "within days or a week, has terrible numbness or tingling and weakness," says Gorson.

The syndrome gets its name from two French military doctors, Georges Guillain and Jean Alexandre Barre. In 1916 they diagnosed two World War I soldiers with the illness. The soldiers had come to the military hospital weak and with a tingling sensation up their arms and legs. One tried to leave at 5 a.m. to rejoin his comrades, but fell down with his backpack on and couldn't get back up.

Here's what happens. The immune system launches an attack against the pathogen that's making someone sick. It succeeds, and the person gets better, but the immune system doesn't realize the battle is over and attacks stuff in the body. Unfortunately, that can include the myelin coating around nerves.

Exposure to pathogens can set the stage for Guillain-Barre syndrome. It can leave people paralyzed for weeks.

Rae Ellen Bichell and Katie Park/NPR

"The immune system is by mistake attacking the peripheral nerves," says Gorson.

That is not good, because like the insulation around an electrical wire, if the nerve coating gets damaged, the messages traveling from the central nervous system to the rest of the body can get lost.

Tim and Luther were admitted to the hospital and were told to expect a quick decline. Their blood was filtered to remove the antibodies attacking their own bodies, and they received injections of antibodies from donated blood.

No matter what the cause, a diagnosis of Guillain-Barre syndrome, or GBS, usually means you're about to go through something really traumatic. You can expect to lose almost everything that makes you you. That could mean not being able to walk, to talk — even to breathe.

But after weeks or months in the intensive care unit, you'll gain it back. Probably.

Gorson says about 80 percent of people who come down with Guillain-Barre will recover almost fully. Very few die. And some people recover, but never fully regain their abilities. And no one knows, while in the midst of Guillain-Barre, how much they'll get back.

Kelli Glenn holds a photo of her father while he was in the hospital.

Meredith Rizzo/NPR

"I was watching TV and I lost use of the right side of my face. All the muscles just sagged," says Tim, recalling the first few days in the hospital.

Within five days of entering the hospital, the muscle that used to lift Tim's lungs for each breath went lax, so the staff put a breathing tube down his throat, taping it to his mouth. Then he had to go on a ventilator, through a tube that went straight to his windpipe through a hole in his neck.

"You feel like your body is a bellows, and you feel like you're being pumped and fanned again, again, again," says Tim.

Because Tim's nerves were under attack, every little touch was excruciating — even a soft towel felt like steel wool digging into his skin. And he'd lost control over his mouth and throat muscles, so he couldn't talk anymore. He could blink and nod to some extent, but that was about it.

Tim Goliver and his wife, Christine, last year in Washington, D.C. Goliver was 21 when he first developed a stomach bug, and then Guillain-Barre.

Courtesy of Tim Goliver

"I was just completely unable to move and I just would watch the same episode of Sports Center again and again on replay and feel like I was in a loop and things were totally out of control," says Tim.

When friends and family came over, they'd communicate to him with a poster full of letters, slowly dragging their fingers across each letter until Tim nodded or blinked to indicate he wanted to use it to spell something out. It could take 10 minutes to spell out one word.

For weeks, he lay paralyzed and silent, fed through a tube. When he did start breathing on his own again, Tim says, each breath was so nerve-racking it felt like he was about to fall off the edge of a cliff.

"But bit by bit, it got to the point where I was able to do that and it felt like I was in control," he says. Tim spent two months in the intensive care unit and two months in rehab, and then went home in an electric wheelchair.

Luther lost mobility, too, and spent weeks in intensive care. But he was able to breathe and talk the whole time.

"I remember my sister saying, 'GBS took everything else away but didn't take his mouth away,' " says Luther, laughing.

During his years in the military, Luther had routinely aced the physical fitness tests. He trained about 2,000 recruits and sent them off on their military careers. There's an old saying, "the more you sweat in peace, the less you bleed in war," he says.

Luther trained recruits in the military.

Meredith Rizzo/NPR

"The military gave me the idea that I could do just about anything, so when I was in the hospital, I looked at this illness as just another mission that I had to accomplish," says Luther.

He loved being in shape because it was the one thing he knew he could control, but Guillain-Barre syndrome made him so weak that he couldn't even blink. When he fell asleep, his eyes would just roll back in his head. The nurses had to put gel on his eyes so they wouldn't dry out at night. After six weeks in the hospital, he saw himself in a mirror for the first time.

"And when I looked up, I was shocked. I was floored that that was me — this thin, gaunt guy. That was probably more shocking to me than anything," he says.

He'd lost about 30 pounds. For his birthday, the nurses pureed a cake for him, because his face and throat muscles were too weak to chew and swallow solid food. "It was horrible, but I loved them for it," he says.

For a while, things did not look good — he wasn't making any progress toward moving again. But when a doctor told Luther that most people fully recover, that gave him hope. "It's on. I got this, Doc," he said. "GBS done messed with the wrong person."

Every night he'd give himself a pep talk, repeating a line from a song. " 'Nobody told me the road would be easy, but I don't believe He brought me this far to leave me.' Just say that every night. Every night," he says.

One day, Luther moved his hand ever so slightly. Then a muscle twitched in his leg. A few days later, he blinked. After months in the hospital, he was transferred to rehab, where he learned how to move around in a wheelchair.

Finally he was able to return to the house that had been full of boxes when he left about six months before. He had to live in the basement because he couldn't get up the stairs. His progress at home was excruciatingly slow.

"Days start running into weeks, weeks start running into months," he says.

Luther was not one of the lucky 80 percent. He's in the 20 percent of GBS patients who don't recover fully. For the most part, he's independent. He lives in his own apartment at National Harbor near Washington, D.C. An aide stops by three times a week to help out with cleaning and cooking. He goes out to movies and dinner with his family in an electric wheelchair. He loves to read on a dock at the harbor. He's even learning Spanish. But he still can't take more than a few steps with a walker, and just moving his face enough to talk can feel like a muscular feat.

Luther checks out the waterfront near his home in National Harbor, Md.

Meredith Rizzo/NPR

"One of the things I hate the most is that I lost my ability to smile. It's difficult for me to do. It looks almost like a grimace," he says.

It's been six years since he first got sick.

"It doesn't dishearten me, but I realize this just might be my plight, so I take a smile with me and let's go. Make the best of it," he says.

Tim, on the other hand, recovered almost fully. He quickly regained his ability to talk and work. He went back to school and got his degree. He even proposed to his wife at the top of a mountain.

"At the point where I started to walk up mountains again without pain, I felt that I had conquered the actual experience. I look at it now and I don't see anything that it's keeping me from doing," says Tim.

He has leather braces to stabilize his ankles, some tingling in his feet, and a very small scar on his throat from the ventilator, a mark from when he hit rock bottom. That's about it.

Why did Tim recover so much more function than Luther did? And why did the two of them get Guillain-Barre syndrome when so many other people who were exposed to the same bugs didn't?

"Unknown," says neurologist Gorson. "There's clearly an interaction between the infectious agent, the immune response, and then something that's special or unique about the patient's peripheral nerve system," he says. Sometimes it has to do with age, medical care, how much nerve damage happened, or even the kind of bacteria or virus that caused the illness in the first place.

Predicting how much a patient will recover is one of the things Gorson and other neurologists are trying to figure out. They're collecting blood from over 1,000 people around the world, hoping to find out what triggers some people's immune systems to react in such an extreme way. It might lead to better treatments, or maybe even something they can do to stop the progression of the disease before it gets so bad.

If the Zika virus does begin spreading through the U.S. as predicted, there may be more cases of Guillain-Barre syndrome. The condition will still remain rare, but even a slight increase in cases could be horrible — not just for the people who get it, but also due to the strain it puts on hospital intensive care units and insurers.

"I cost over a million dollars, and that is something I have never forgotten," says Tim.

Tim and Luther did not get Guillain-Barre from Zika. But the result is the same. And if their cases show anything, it's that no matter what the cause, the disease is one wild ride.

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

Reviving Memory With An Electrical Current

NPR Health Blog - Sat, 05/14/2016 - 7:00am

Credit: Lily Padula for NPR

Last year, in an operating room at the University of Toronto, a 63-year-old woman with Alzheimer's disease experienced something she hadn't for 55 years: a memory of her 8-year-old self playing with her siblings on their family farm in Scotland.

The woman is a patient of Dr. Andres Lozano, a neurosurgeon who is among a growing number of researchers studying the potential of deep brain stimulation to treat Alzheimer's and other forms of dementia. If the approach pans out, it could provide options for patients with fading cognition and retrieve vanished memories.

Right now, deep brain stimulation is used primarily to treat Parkinson's disease and tremor, for which it's approved by the Food and Drug Administration. DBS involves delivering electrical impulses to specific areas of the brain through implanted electrodes. The technique is also approved for obsessive-compulsive disorder and is being looked at for a number of other brain disorders, including depression, chronic pain and, as in Lozano's work, dementia.

In 2008, Lozano's group published a study in which an obese patient was treated with deep brain stimulation of the hypothalamus. Though no bigger than a pea, the hypothalamus is a crucial bit of brain involved in appetite regulation and other bodily essentials such as temperature control, sleep and circadian rhythms. It seemed like a reasonable target in trying to suppress excessive hunger. To the researcher's surprise, following stimulation the patient reported a sensation of deja vu. He also perceived feeling 20 years younger and recalled a memory of being in a park with friends, including an old girlfriend. With increasing voltages, his memories became more vivid, including remembering their clothes.

Using a 3-dimensional brain mapping technique called standardized low-resolution brain electromagnetic tomography, or sLORETA, Lozano's group uncovered an explanation for the unexpected findings. They found that stimulating the hypothalamus was in turn driving increased brain activity in the hippocampus, a key cog in the brain's memory circuitry. As Alzheimer's progresses, not only does the hypothalamus atrophy, but electrical communication between neurons in the region also gradually becomes impaired.

Research News Parkinson's Treatment Could Work For OCD, Too

That our memories — so entwined with our personalities and senses of self — might be so vulnerable to a brown out is, existentially speaking, rather alarming. There's something palpably dehumanizing about reducing our past selves to the exchange of electricity between neurons, and also about retrieving memories by hot-wiring the brain.

Yet the prospect of the latter is undeniably intriguing. Given that Alzheimer's affects 1 in 9 people over the age of 65 and that current therapies are in many patients dismally ineffective, Lozano felt all but obligated to dig further. His group launched a test in six patients and published the results in the Annals of Neurology in 2010.

The study included patients with mild and severe disease who received stimulation in the fornix continuously for 1 year. "The fornix is like the highway leading into the hippocampus," explains Lozano. "It's easier to stimulate than the hippocampus itself and crucial to memory function." As expected those with more severe disease continued to mentally deteriorate, however it appeared that in those with mild disease, cognitive decline slowed with stimulation.

Next, Lozano launched a randomized trial involving 42 patients from the US and Canada, all of whom had electrodes implanted in the fornix on both sides of the brain. In half the patients the stimulation was turned on right away. In the other half the stimulation wasn't turned on for a year, though they didn't know it.

Preliminary results, published in December 2015 in the Journal of Neurosurgery, were mixed but encouraging.

Given that so few people have had electrical stimulation applied to memory circuits, perhaps the most significant finding was that both the surgery itself and DBS of the fornix appear safe. No serious long-term neurological side effects were seen in either patient group, supporting future research in the field.

In terms of efficacy, however, after one year there were no significant differences in cognition between the groups, as measured by two scales commonly used to measure Alzheimer's disease symptoms, the ADAS-Cog and CDR-SB. Alzheimer's tends to progress slowly and reversing or slowing the neurodegeneration associated with condition may take time to become noticeable. Lozano's final results won't be reported until four years out.

More intriguing for now were comparisons of glucose utilization. Glucose is our brains' primary fuel. The degree to which glucose is burned is a commonly used measure of brain activity. Patients with Alzheimer's typically have reduced glucose activity in their brains, as well as, again, shrinking memory circuits. The older patients in Lozano's study who had stimulation turned on exhibited markedly increased glucose use in the brain's memory regions. Not only that, the hippocampus of some study patients who received DBS actually increased in size.

Reversing withering hippocampi by encouraging the growth of new neurons is seen as a holy grail in Alzheimer's research, and Lozano's finding is supported by a recent animal study demonstrating that DBS in rats causes the release of growth factors that induce neuronal growth in the hippocampus.

Lozano acknowledges that retrieving childhood memories, which he says has occurred in about one-third of his patents — requires lofty voltages that he would be uncomfortable sending patients home on. Yet he's encouraged by the early findings that suggest the procedure is safe. "We also know that in patients who receive stimulation there is an increase in glucose utilization in memory areas of the brain," he says, a finding that could mean there's a way to overcome some of the damage from Alzheimer's.

Evidence supporting DBS in dementia is emerging from other research groups as well. A 2012 study published in the New England Journal of Medicine reported that in seven patients receiving DBS to a brain region called the entorhinal cortex, spatial memory improved – meaning they could more easily remember the locations of newly learned landmarks. The entorhinal cortex works in concert with the hippocampus to solidify memories.

A group at the University of Cologne in Germany is instead focusing on delivering DBS to a part of the brain called the nucleus basalis of Meynert, another region in which impaired neuron function is thought to contribute to Alzheimer's. Last year they published a study in Molecular Psychiatry in which four of six patients either remained cognitively stable or improved in response to DBS, as measured by the ADAS-cog. Like in Lozano's study no serious side effects were seen.

Despite the mounting evidence for DBS, not everyone is convinced.

Referring to Lozano's second clinical study, Dr. Nader Pouratian, a neurosurgeon and DBS researcher at UCLA, comments, "The recent deep brain stimulation trial for Alzheimer's disease clearly demonstrates the safety of this approach for trying to treat the progression of disease. Unfortunately, [the findings] suggest that the therapy may not be as robust as initially proposed."

However he acknowledges Lozano's results suggest that DBS to the fornix might be promising for a subgroup of patients, those being older people with less severe disease.

"The most promising areas are likely the fornix or the entorhinal area," he says. "But I believe further studies are necessary to better elucidate the efficacy of this treatment before proceeding to a larger scale randomized trial."

In a 2008 episode of the medical television drama House, the show's main character Dr. Gregory House survives a bus crash that leaves his memory murky. In an attempt to remember the medical history of a fellow collision victim – and inspired by Lozano's initial paper — House voluntarily undergoes deep brain stimulation. Following the procedure the grouchy TV doctor's memory returns. As is customary on the show, he cracks the case.

DBS for treatment of Alzheimer's and other dementias is a field in its infancy. Unlike on TV, in all likelihood it won't be widely used anytime soon to retrieve specific memories. "Even though House did this, we're not doing it yet," cautions Lozano.

Yet the fact that the therapy can in some people rescue recollections – albeit random ones – and possibly induce new neuron growth in memory regions of the brain seems reason enough to pursue it further.

"We're hoping to use electricity to drive activity in areas of the brain involved in memory and cognition," says Lozano. "We want to turn these brain networks back on."

Bret Stetka is a writer based in New York and an editorial director at Medscape. His work has appeared in Wired, Scientific American and on The Atlantic.com. He graduated from University of Virginia School of Medicine in 2005. He's also on Twitter: @BretStetka.

Copyright 2016 NPR. To see more, visit NPR.
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Pilots And ACLU Sue Airline Over Breast Milk Pumping At Work

NPR Health Blog - Fri, 05/13/2016 - 4:03pm

Frontier Airlines says that there are places to pump breast milk at all the airports where it flies.

Michael Francis McElroy/Getty Images

Brandy Beck considers herself lucky. As a breast-feeding mom, the Frontier Airlines pilot has experienced severe breast pain, engorged breasts, clogged ducts, decreased milk supply, three interruptions while pumping at work, and pumping in airport and airplane bathrooms.

But unlike some of her colleagues, she escaped mastitis. Mastitis is a bacterial infection of the breast that can occur with clogged milk ducts if women cannot fully express their breast milk. And not receiving adequate, legally required accommodations for pumping breast milk at work is precisely why Beck and fellow Frontier pilots Randi Freyer, Shannon Kiedrowski and Erin Zielinski are involved in a complaint against Frontier Airlines.

"All four of us love our jobs, we love flying for Frontier and we love flying airplanes," Beck says. "Most of us have wanted to do it all our lives, and we just want some equality in the workplace."

The American Civil Liberties Union, the ACLU of Colorado and the law firm Holwell Shuster & Goldberg LLP filed discrimination charges May 10 with the Equal Employment Opportunity Commission on the women's behalf. The charges claim that Frontier is discriminating against women by not providing sufficient accommodations for pregnant and breast-feeding employees.

"This has been a long process of trying to struggle to get these accommodations with no success," says Galen Sherwin, a senior staff attorney with the ACLU in the women's right project. "This lawsuit is the necessary last resort."

According to Sherwin, the ACLU and the law firm sent Frontier management a letter describing the women's difficulties and several possible solutions, including temporary non-flying assignments that would allow easier accommodations, extension of maternity leave if the women wanted it and designated places where the women could pump in airports Frontier uses and on the plane when necessary.

For its part, the airline says that it already provides places that comply with federal and Colorado state requirements in all airports it uses, according to Cindi Ruff, vice president of human resources at Frontier. Women can contact the station manager of each airport to find the location, she says.

"If they do [have those stations], they have not communicated that to the women I've spoken with, including women beyond these four pilots, despite repeated requests," Sherwin says. "If it's up to the individual woman to contact each individual airport on her own, that would not be a sufficient accommodation. It's tantamount to providing no support to the women."

Beck says the stations she does know of are often a half mile from Frontier gates and are sometimes insufficient, such as the one at Denver airport that was being used for storage when she needed it. As directed by an assistant pilot, she used a vacated office — and movers attempted to enter while she was pumping.

Any temporary reassignments are governed by the collective bargaining agreement of the pilots' union, Ruff told Shots. That contract only addresses non-flying reassignments for on-the-job injuries and states that pilots who cannot return to work after four months may be entitled to receive an unpaid medical leave of absence. Maternity leave also is unpaid.

"We assume that Frontier is in compliance with the Americans with Disabilities Act, which requires employers to provide reasonable accommodations, and temporary reassignment is one potential accommodation that Frontier that would be legally obligated to provide," Sherwin said. "If they're offering that to people with disabilities, then they should be offering that to women."

Sherwin added that medical leave has only been granted for serious childbirth complications leading to physical injury or postpartum depression, and that breast-feeding women who requested it were denied.

Shannon Kiedrowski, one of the pilots involved in the suit, writes that she "battled for months to get Frontier's management to help future new moms." But, she says, "my efforts went nowhere."

Frontier's Ruff says that the airline has worked with pilots who have raised concerns and adjusted their schedules to have less flying time.

But less flying time doesn't address the needs for accommodations during flying time, Sherwin says. Beck says she plans her flight days carefully to schedule in pumping time, but unexpected and sometimes long flight delays can interfere, necessitating pumping during a flight.

"This situation is unique, but ultimately it's all about the safety of our passengers," Ruff says. "Being on an aircraft and being a pilot is a very unique situation, unlike any other profession, and unfortunately there are sometimes limitations in what can be extended to an individual."

The challenges for pilots are similar to those for surgeons operating, where the patient's safety is paramount, says Katy Kozhimannil, an associate professor of health policy and management at the University of Minnesota School of Public Health.

"It is a unique circumstance, but there are other circumstances where businesses face similar challenges in managing the trade-off between the safety of the patients or passengers and the urgent health needs of their employees," Kozhimannil says. "If there are barriers, that's certainly understandable, and maybe there's a need for greater support for employers. But there have to be ways to try to address the needs of nursing mothers. It's extraordinarily important, and it's the law."

Pilots needing bathroom breaks leave the cockpit to do so, and the copilot must don an oxygen mask while the pilot is gone, Ruff says.

"The request is that women be permitted to take breaks during flights as needed on the same terms that pilots are able to address their other bodily needs," Sherwin says. "To say to a woman who's breast-feeding that you can't leave the cockpit to take care of her bodily needs but to allow everyone else to leave to use the bathroom is sex discrimination."

It can also have health consequences, Kozhimannil says. Her research has found that only 40 percent of full-time or part-time employed women surveyed in 2011 and 2012 have been provided both break time and private space to express breast milk, as required by the Affordable Care Act. Those women were also twice as likely to be exclusively breast-feeding at 6 months and more likely to breast-feed at all with each passing month.

"That's unsurprising, given the physiology of breast-feeding, because women need to express breast milk during the day when they're away from their child for their bodies to keep producing breast milk," Kozhimannil says. "When you stop expressing breast milk, your supply diminishes and you're no longer able to breast-feed." Clogged ducts and mastitis are other risks of not adequately expressing breast milk.

One possible solution more broadly would be state or federal laws requiring paid family leave, enabling the pilots to take a longer unpaid leave without losing as much income. Pilots are already required to start unpaid maternity leave 8 weeks before their due date and have the option of four more unpaid months after delivery.

"I believe it's unrealistic to ask a working mom to come back after four months and be away from her child for four to five days," Beck says, adding that the problem is industry wide for pilots and flight attendants. "Some people can afford that, and some people can't. The most ideal solution is to have choices, because every individual needs something different."

The U.S. is the only country in the world besides Papua New Guinea that does not require employers to provide any paid family leave, says Ellen Bravo, executive director of Family Values @ Work, a network of coalitions working for paid leave policies.

"We tell women to be good mothers and then we punish them for doing so by making their family suffer financial insecurity or by shaming them for doing something like breast-feeding," Bravo says. "That's got to change. It's a scandal that nearly one in four women go back to work within two weeks."

The only states currently requiring paid family leave are California, New Jersey, Rhode Island and, as of April 1, New York.

The lawsuit does not request money, Sherwin says.

"They would like ideally to have Frontier adopt these solutions so no other women would have to go through what they went through," Sherwin says. "It's 2016. It shouldn't be that women have to choose between their jobs and breast-feeding their babies, and that's why our clients are bringing the case."

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

More Low-Income Kids Now Have Health Coverage

NPR Health Blog - Fri, 05/13/2016 - 10:04am

A doctor listens to a child's breathing.

B Busco/Getty Images

Bolstered by the federal health care law, the number of lower-income kids getting health coverage continues to rise.

During 2014, the first full year of the law's implementation, 91 percent of children who were eligible for Medicaid or the Children's Health Insurance Program were enrolled, according to a study by researchers at the Urban Institute. In 2013, that figure was 88.7 percent and only 81.7 percent in 2008. Medicaid and CHIP are both federal-state health coverage programs for lower-income residents, but CHIP provides coverage for kids whose families earn too much to qualify for Medicaid.

Given that coverage rates were already quite high for children, "I was surprised to see gains to such an extent in 2014, and for that to happen for so many different kinds of kids and in so many different places," said Genevieve Kenney, co-director of the Urban Institute's Health Policy Center who was an author of the study.

Not surprisingly, the biggest coverage increases occurred in states that expanded Medicaid to adults with incomes up to 138 percent of the federal poverty level (about $33,500 for a family of four), likely a spillover effect as adults signed up and learned that their kids were eligible, too. So far 31 states and the District of Columbia have adopted the Medicaid expansion.

The coverage increase among children eligible for Medicaid and CHIP mirrors changes in the uninsurance rate for children overall, which fell from 7 percent in 2013 to 5.8 percent in 2014, the researchers noted. They estimated that 4.5 million children younger than 18 are still uninsured. That population varies significantly among states, according to the report, with uninsurance below 4 percent in 14 states and above 9 percent in four: Alaska, Arizona, Nevada and Texas.

There were coverage gains for all types of children between 2013 and 2014, including those of different ethnic groups, ages and family incomes. But progress has been slower for some groups, including adolescents between age 13 and 18 and Hispanic kids in families in which no parent speaks English.

The study used data from the American Community Survey, an ongoing survey by the U.S. Census Bureau that includes data on more than 700,000 children age 18 and younger.

Nearly two-thirds of the 4.5 million children who were uninsured in 2014 were eligible for Medicaid or CHIP, the study found. Many of them have been enrolled in Medicaid at some point in their lives, Kenney said.

"That puts the spotlight on renewal and retention," said Kenney. States have adopted different strategies to encourage continued coverage. Some have policies that, for example, allow kids to stay enrolled in Medicaid or CHIP for the full year even if their parents' income or other circumstances change. Others determine whether kids are still eligible for the programs by conducting data checks rather than requiring parents to fill out paperwork.

Kenney said she expects the uninsurance rates for kids improved again in 2015 as more states expanded Medicaid and families enrolled in subsidized insurance on the state marketplaces. This month, Arizona reinstated its CHIP program, after freezing enrollment in 2009, thus extending coverage to more lower income children.

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Email questions or ideas for future stories: KHNHelp@KFF.org. Michelle Andrews is on Twitter: @mandrews110.

Copyright 2016 Kaiser Health News. To see more, visit Kaiser Health News.
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Researchers Offer Jet Lag Advice In Return For Data About Your Sleep

NPR Health Blog - Thu, 05/12/2016 - 12:42pm

What time is it?

Doug Griswold/Bay Area News Group/MCT via Getty Images

Companies like Google and Fitbit gather all kinds of data on how people behave. Why couldn't scientists use an app to do the same thing?

Two years ago, mathematicians at the University of Michigan released an app called Entrain to help people get over jet lag. Users entered data on their time zone, when they sleep, what kind of light they're exposed to, and the app gives them an ideal schedule to recover.

If app users consent, the data get sent back to the researchers. The trade-off — accurate data for useful jet lag advice — motivates people to send in accurate data, says Olivia Walch, a doctoral candidate working on the project. "It's the path forward for academics," she says.

The researchers collected data from more than 5,000 users of the Entrain app from 100 countries. The analysis was published last Friday in the journal Science Advances.

Among the findings: Women schedule around 30 minutes more sleep than men; people who spend time in outdoor light tend to go to bed earlier and sleep more than people who spend most of their time in indoor light; and sleep patterns converge as people age, suggesting that there's a narrower window for when they can fall and stay asleep.

The authors and others say the work shows their app can accurately collect sleep data.

The approach has potential, says Daniel Forger, professor of mathematics and computational medicine and bioinformatics at the University of Michigan and one of the authors. "You could call a million people up, most of those people won't answer your survey, and spend millions of dollars doing this," he says. "But what was so remarkable was that — for almost no amount of money and almost instantaneously — we could collect this kind of data."

Typically, sleep researchers get data from controlled lab environments or large studies with subjects reporting back on what they did, says Jamie Zeitzer of the Stanford Center for Sleep Sciences and Medicine. An app bridges the two, he says.

"This is real life, this is what's actually happening and ... especially in something like sleep, there's a dichotomy between what people remember they do ... and what they actually do," Zeitzer adds. "This fits quite nicely into that gap and helps us understand actual behavioral patterns."

Other researchers wonder about generalizations drawn from the data. Among them: Diane Lauderdale, chair of the department of public health sciences at the University of Chicago and a sleep researcher, who says that while the patterns in this paper are plausible, she's not sure the data support some of the findings.

Her concern is that people who use the app — they have a smartphone, agree to send data back, presumably travel quite a bit — may not be representative of the people in their countries.

"There's a general challenge as we move into big data sources about how to weigh the attractiveness of using these ... to answer questions ... that we have not been able to answer and the real limitation that we don't really have control over, or knowledge about, exactly who we're getting the data from," she says. "It's not just unique to this study."

Michigan's Walch agrees, and she says she has spent nights stressing out over this potential selection bias. She points out the patterns they describe match what sleep researchers have previously established in more controlled studies.

"The very first wave of data analysis we did, I was almost distraught," she says. "A lot of our things are confirmatory, and I came to realize, 'No, this is great that they're confirmatory of these smaller studies with fewer people, because it tethers us to reality.' But then, stepping back, it's still a problem."

She says she hopes the spread of the technology and improvements in its ease of use will help.

Ida Sim, co-director of biomedical informatics at the University of California, San Francisco Clinical and Translational Sciences Institute, shares Lauderdale's concern about selection bias and adds that big data researchers have to go out of their way to get a random representative sample.

They need to hold people's hands through tech problems, and motivate them to report good data, she said. As an example of something that could meet that standard, she points to the Precision Medicine Initiative from the National Institutes of Health, which aims to recruit 1 million or more people in the U.S. to study treatments that take into account different genes, environments and lifestyles. The president called for $215 million in 2016 for this program.

Sim says another issue is making sure that researchers are measuring the same thing. For instance, an app that reports a blood glucose value isn't very useful to other researchers unless they know whether it's fasting blood glucose level, a random level, an average over the past week or a single reading.

"It's like if people are speaking different languages, and they all use a slightly different word ... and it turns out everybody's talking about the same thing, but the words are slightly different and so communication is impeded."

She co-founded a nonprofit called Open mHealth that aims to develop open common standards, taking inspiration from the Internet's open architecture, as explained in a 2010 article in Science.

As for the study on sleep patterns, she says "the findings weren't that earth-shattering, but the methods and approach are illustrative" and that we can expect more big data research like this in the future.

Alan Yu is a freelance reporter in Hong Kong who contributes regularly to the South China Morning Post. You can follow him on Twitter: @Alan_Yu039

Copyright 2016 NPR. To see more, visit NPR.
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Look, Ma! No Mitochondria

NPR Health Blog - Thu, 05/12/2016 - 12:11pm

These mitochondria, in red, are from the heart muscle cell of a rat. Mitochondria have been described as "the powerhouses of the cell" because they generate most of a cell's supply of chemical energy. But at least one type of complex cell doesn't need 'em, it turns out.

Science Source

Scientists have found a microbe that does something textbooks say is impossible: It's a complex cell that survives without mitochondria.

Mitochondria are the powerhouses inside eukaryotic cells, the type of complicated cell that makes up people, other critters and plants and fungi. All eukaryotic cells contain a nucleus and little organelles — and one of the most famous was the mitochondrion.

"They were considered to be absolutely indispensable components of the eukaryotic cell and the hallmark of the eukaryotic cell," says Anna Karnkowska, a researcher in evolutionary biology at the University of British Columbia in Vancouver. Karnkowska and her colleagues describe their new find in a study published online Thursday in the journal Current Biology.

This is a light micrograph of the microbe that evolutionary biologists say lives just fine without any mitochondria.

Naoji Yubuki/Current Biology

Mitochondria have their own DNA, and scientists believe they were once free-living bacteria that got engulfed by primitive, ancient cells that were evolving to become the complex life forms we know and love today.

For decades, researchers have tried to find eukaryotic cells that don't have mitochondria — and for a while they thought they'd found some. One example is Giardia, a human gut parasite that causes diarrhea. It was considered to be a kind of living fossil because it had a nucleus but didn't seem to have acquired mitochondria. But additional studies on Giardia and other microbes showed that actually, the mitochondria were there.

"It turned out that all of them actually had some kind of remnant mitochondrion," says Karnkowska, who notes that mitochondria perform key jobs in the cell beyond just generating power.

A biggie is assembling iron-sulfur clusters for certain proteins, which is thought to be a mitochondrial function that's really essential. So even if a microbe powers itself in a different way and has a limited form of the organelle that isn't the same as the mitochondria found in people, Karnkowska says, "it's still a mitochondrion and it has some important function for the cell."

That kind of vestigial mitochondrion is what she expected to find when she was a researcher at Charles University in Prague and started investigating a particular gut microbe that had been isolated from a researcher's pet chinchilla.

After she and her colleagues sequenced the gut microbe's genome, however, they found no trace that it made any mitochondrial proteins at all. "So that's a great surprise for us," she says. "That should theoretically kill the cell — it shouldn't exist."

What they learned is that instead of relying on mitochondria to assemble iron-sulfur clusters, these cells use a different kind of machinery. And it looks like they acquired it from bacteria.

The researchers say this is the first example of any eukaryote that completely lacks mitochondria.

Michael Gray, a biochemist at Dalhousie University in Halifax, Nova Scotia, says the researchers have made a "compelling" case that they have a bona fide eukaryote without any vestige of a mitochondrion; he calls the finding "unprecedented."

"The observation is significant, in that it clearly demonstrates that a eukaryote can still be a eukaryote without having a mitochondrion," he tells Shots via email.

However, the results do not negate the idea that the acquisition of a mitochondrion was an important and perhaps defining event in the evolution of eukaryotic cells, he adds.

That's because it seems clear that this organism's ancestors had mitochondria that were then lost after the cells acquired their non-mitochondrial system for making iron-sulfur clusters.

"This is not the missing link of eukaryotic evolution," agrees Mark Van Der Giezen, a researcher in evolutionary biochemistry at the University of Exeter in the United Kingdom.

Still, he says, it is an example of how flexible life is.

"It lives in an area without oxygen and therefore can get rid of a lot of biochemistry that you and I would need in our cells to survive," says Van Der Giezen. "This organism managed to adapt in such a way that it could lose an organelle, which every textbook will tell you is an essential feature of eukaryotes. That's pretty amazing. It shows you that life is extremely creative in finding a way to eke out an existence."

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DIY Blood Tests? There's A Downside To Ordering Your Own

NPR Health Blog - Thu, 05/12/2016 - 11:10am

"I'm afraid there's a growing sense that the path to health is through testing," says Dr. H. Gilbert Welch, a Dartmouth Institute internist who has written books on the pitfalls of overdiagnosis. Encouraging the worried well to order their own blood tests feeds that mindset, he says.

TEK Image/Science Photo Library/Getty Images

One aspect of the downfall of Theranos is the blood-testing company's leveraging of the Do-It-Yourself ethos to promote its product. Theranos provides consumers with a menu of more than 200 low-cost diagnostic blood tests for an array of drugs, ailments, deficiencies and diseases.

It's legal to order blood tests without consulting a doctor in about two dozen states. But should you?

Theranos and some other medical labs say yes, while critics argue that's a recipe for disaster.

Here's Theranos' founder, Elizabeth Holmes, at TEDMED in 2014, lacing her stemwinder of a presentation with the ideals of patient self-empowerment.

"My own life's work in building Theranos is to redefine the paradigm of diagnosis away from one in which people have to present with a symptom in order to get access to information about their bodies," she said, "to one in which every person, no matter how much money they have or where they live, has access to actionable health information at the time it matters."

She also pitched the crowd an absurdity:

"(T)oday, I can go buy a deadly, exotic animal, a venomous viper, a military truck or armored vehicle. I can buy a tank ... but I can't order a blood-based pregnancy test, or an allergy test. Because that could be dangerous."

An inspection by the federal government last year found that deficiencies at Theranos' California lab could "pose immediate jeopardy to patient health and safety." The company is currently waiting for the Centers for Medicare & Medicaid Services to render a final decision on whether it will lose its license to operate its labs. But, for now, Theranos still does tests at its wellness centers in dozens of Walgreens and other locations in Arizona, plus one in California.

Theranos isn't the only company marketing blood testing to the worried well. WellnessFX has a partnership with the longtime medical laboratory Quest Diagnostics; consumers in all but seven states can use the WellnessFX website to order their own "biomarker" tests online, along with more traditional tests of thyroid function, blood sugar or testosterone.

Like Theranos, WellnessFX has baked into its marketing campaign the ideals of patient access and independence.

"A lot of the data that can be used to help understand what is best for the patient — historically, that's always been the clipboard that's been turned around facing the physician ... and never really been shown to the patient," said WellnessFX co-founder Brent Vaughan in a 2013 promotional video. "Because there's always been this belief that patients can't understand — or they don't want to understand — this information."

A Growing Trend

Last year, LabCorp, a behemoth in medical diagnostics, dipped a toe in the waters of DIY diagnostics by allowing Arizona consumers to order their own tests. LabCorp CEO David King said in an email that the company's market research shows a "significant percentage" of consumers are interested in initiating tests on their own. The company plans to expand the service into other states later this year.

"As consumers bear more of the cost of health care out of pocket, they should be, and are becoming, increasingly engaged in managing their health care," King said. "We absolutely support them in doing so."

Last April, when the state of Arizona enacted its law — pushed by Theranos — allowing consumers to order their own tests, the bill passed in the House 60-0 and the Senate 26-2. Sen. Steve Farley, a Democrat, was one of the "no" votes. He isn't surprised at Theranos' unraveling.

"Really, what we were being asked to do in that bill was to allow our constituents in Arizona to become beta testers, and use their own bodies as the tool of that beta testing," he said. (Theranos declined to comment.)

The debate over the wisdom of cutting doctors out of the diagnostic loop has been going on for years. Some academics have been vocal about their reservations. Dr. Norman Paradis, an emergency medicine physician and professor of medicine at Dartmouth who has consulted for diagnostic startups, calls the model of offering a wide assortment of tests — as Theranos does — a recipe for disaster.

"If you simply run medical tests in large numbers of people who don't have the signs and symptoms of a certain disease, then many of the results you get will be false positives," he explained.

And those patients could then wind up going farther down the rabbit hole of more invasive, potentially harmful tests and treatment.

Paradis said getting medical students and even medical residents to appropriately order tests is difficult enough. "So if it's difficult for them, it's even harder for the layperson."

Dr. H. Gilbert Welch, an internist at the Dartmouth Institute and author of several books on the problems of overdiagnosis, thinks getting your own blood tests is part of the larger negative trend — testing people who aren't really sick.

"I'm afraid there's a growing sense that the path to health is through testing," he said. "But you don't test yourself to health. Health is much more about how you move, what you eat and finding joy and purpose in life."

WellnessFX has taken concerns about false positives into account, said Dr. Murdoc Khalegi, an emergency medicine physician, and the company's medical director. He said the company works with physicians to make sure the tests it offers are not susceptible to inaccurate results.

"We work very hard to [offer tests] that are something a consumer can understand, like having elevated cholesterol or blood sugar," Khalegi said. "We encourage all of our results to be shared with physicians. But to restrict people from even having that information, which is the way it currently exists in some settings, would be unfortunate. People should be aware if they have certain health risks."

The Center for Democracy & Technology's Michelle De Mooy, who has researched the issues of privacy and transparency in health care, dismisses the argument that patients can't make knowledgeable decisions about when to get tested. She said the issue of false positives is "pretty reasonably addressed" with warnings.

Both she and Khalegi point to the high cost of health care as one reason to give patients more direct access to diagnostic tests. It's often cheaper for the patient, they say. Having a health insurance policy with a high deductible, or having a lack of access to transportation or child care are reasons people might choose to get tests in the most efficient, least time-consuming way possible.

"The economic disparity question is one that the health care establishment tends to gloss over," De Mooy said.

One Patient's Story

Amy, who lives in Santa Cruz, Calif., and asked us not to use her last name, to protect her medical privacy, explained why she was motivated to go online last year to order her own test for iron-deficiency anemia, though she was feeling healthy.

The U.S. Preventive Services Task Force makes no recommendation one way or the other regarding testing for iron-deficiency anemia among people who are asymptomatic. But Amy is vegan, and some of her friends persuaded her to seek out testing because cutting meat and dairy from your diet can increase the risk of iron-deficiency anemia.

And because of her health policy's high deductible and what she said were bad experiences with insurance companies, Amy didn't want to go through her health insurer.

Her iron level came back low, according to the test result. But rather than start taking an iron supplement, make changes to her diet or take other action on her own, she made an appointment with a doctor, where she mentioned she'd donated blood a week before the test. Amy hadn't known this would deplete her iron. And because her other numbers were fine, the doctor told her not to worry.

The whole experience — the blood draw notwithstanding — was painless and reassuring, Amy said.

"I liked being able to answer my own questions and to go to the site and pick which things I was curious about. I like being able to do it independently, since I don't have a regular general practitioner I go to."

In some ways Amy fits the profile that both advocates and opponents of self-testing point to: She had no symptoms of anemia and got a test that wound up being unnecessary. But she also felt she had a psychological need to know, and a financial need to pursue the answer cheaply.

Murdoc, of WellnessFX, said that while he defers to official guidelines on medical testing, Amy probably did the right thing in checking for anemia.

"It's a very cheap blood test," he said.

This story was produced by KQED's daily health and technology blog, Future of You. The blog's host and editor is Jon Brooks.

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

Selling Health Insurance Across State Lines Sounds Good, But Is It?

NPR Health Blog - Thu, 05/12/2016 - 10:49am

Presidential candidates like to float solutions to long-standing problems. Making those solutions stick is another thing altogether.

When it comes to health care, the enactment of the Affordable Care Act, rather than tamping down chatter about how to insure people, seems only to have spurred more of it.

But you know what? There's a reason some problems are long-standing. They may have no easy solution. Or the solution isn't politically feasible. Or there's a solution that sounds good on the campaign trail but isn't likely to actually work.

In the first of a series of videos about health policy promises that sound like a good idea but maybe aren't, Julie Rovner explores why increasing competition in health insurance by allowing sales of policies across state lines might not be such a hot idea after all.

One of the seven planks outlined by Donald Trump in a health plan his campaign released in March calls for interstate sales of insurance.

Watch and listen as Julie explains why selling insurance across state lines isn't all it's cracked up to be. Spoiler alert: Georgia, Maine and Wyoming already allow it, and insurers haven't taken advantage of the option.

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

Meet The Tiny Critters Thriving In Your Carpet, Kitchen And Bed

NPR Health Blog - Wed, 05/11/2016 - 10:57am
Deep Look YouTube

With the weather warming, it's the season for spring cleaning. But before you reach for the broom and mop, consider who else is sharing your home. The variety of uninvited guests in your dustpan may surprise you.

A recent study published in the journal PeerJ took up the challenge of cataloging the large numbers of tiny animals — arthropods — that live in modern human dwellings. In 50 houses in and around Raleigh, N. C., the research team found about a hundred different species of arthropods in each home. The tally included familiar types — like flies, spiders and ants — but also some species that are less well known, such as gall wasps and book lice.

Grains of uncooked rice dwarf this book louse. Though book lice thrive in most human homes, they largely go unnoticed.

Josh Cassidy/KQED

"Even as entomologists we were really surprised," says Michelle Trautwein, now assistant curator of entomology at the California Academy of Sciences in San Francisco. She led the research team, which was based at North Carolina State University in Raleigh.

"We live in our houses all the time," Trautwein says, "so we thought we'd be more familiar with the kind of things we'd come across."

It didn't seem to matter how much the human residents cleaned, she says. "There was a surprising level of biodiversity."

The scientists donned headlamps and knee pads in their hunt for arthropods — creatures that have exoskeletons, multiple appendages and segmented bodies. They collected flies from windowsills, spiders from under sinks and took samples of dust from corners, carpets and rugs — combing through it to find speck-sized creatures.

Entomologist Michelle Trautwein searches a kitchen windowsill, a common place to find arthropods that wandered in from the surrounding environment.

Josh Cassidy/KQED

Any arthropod they turned up was examined by a team of entomologists, using both genetic analysis and traditional visual identification under a microscope.

Among their findings: Homes with kids and pets tended to have the largest variety of these diminutive lodgers. And there were more different species of arthropod on lower floors of a building than higher floors. Common rooms, carpeted rooms and rooms with more windows and doors to the outside seemed to have a greater diversity of micro-guests.

Most of the different types of arthropods they turned up were essentially harmless, and just wandered in from outside.

"The vast majority of things we found don't bite or sting or feed on our food," Trautwein says. "Most of them have no effect on our daily lives."

And many of them live in house dust — a collection of dirt, lint, pollen, hair, pet fur, and flakes of skin shed by humans and pets. Turns out that constant rain of skin is a great source of food for one particular roommate — the house dust mite.

Dust mites are arachnids — small relatives of spiders. Lined up end to end, five dust mites would fit between two millimeter marks on a ruler. Barely visible to the naked eye, dust mites under the microscope look like translucent jellybeans with legs. They don't hunt; they just munch on the steady supply of skin flakes we all slough every day.

Dead skin is mainly composed of keratin, a tough structural protein that also gives shape to nails and hair. It's not a particularly nutritious food, but it is abundant. Dust mites use powerful enzymes to break down the keratin and digest it. After that the mites produce waste pellets at a prodigious rate. Along with the exoskeletons the mites shed as they grow, the poop becomes part of the dust in our homes.

Those mite leavings can affect human health; the droppings contain enzymes that can provoke an allergic reaction in the lungs of some people who inhale the dust. Research suggests allergies to dust mites may be a major contributor to childhood asthma.

Dust mites didn't start out in human homes. A few years ago, scientists at the University of Michigan found genetic evidence that one type of common dust mite had a parasitic ancestor that clung to birds. It may have gone on to colonize warm, humid nests, too, feeding on sloughed skin and feathers — and some descendant ultimately wandered into the dusty, human nests we call home today.

If the idea of mites in your house give you the creeps, you can somewhat reduce their numbers Trautwein says, by vacuuming and mopping often, ditching the wall-to-wall carpets, and avoiding humid climes — dust mites are rare in the desert. The American College of Allergy, Asthma and Immunology advises regular use of a vacuum with a HEPA filter, among other measures, if somebody in your home suffers from dust allergies.

Or, you don't have these allergies, you might just relax — and realize you can't rid your home of all arthropod visitors.

This Storage Mite is smaller than a grain of sand.

Josh Cassidy/KQED

"We are very much a part of the natural world and even our homes that may seem more sterile are not exempt from that," Trautwein says. She sees that as part of life's adventure.

"When we think about wild areas," she says, "it's exciting to think that even our homes are still these unexplored areas waiting for more discoveries to be made."

This post was produced by our friends at Deep Look, a wildlife video series from KQED and PBS Digital Studios that explores weekly "the unseen at the very edge of our visible world." Josh Cassidy is lead producer/cinematographer for the series.

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

State Insurance Mandates For Autism Treatment Fall Short

NPR Health Blog - Wed, 05/11/2016 - 10:15am

Early treatment for autism is key to making the most of the intervention, researchers say.

Marc Romanelli/Blend Images RM/Getty Images

Forty-four states and the District of Columbia have laws on the books requiring health insurers to cover autism treatments. But research evaluating these insurance mandates suggests the efforts are failing to help many children get needed therapy.

The state requirements have increased the number of children by about 12 percent, according to the research presented Wednesday at a major conference on autism spectrum disorder.

There's been a push for health insurers to better cover often-pricey autism treatments, especially applied behavioral analysis, a type of behavioral modification therapy.

Those efforts come as autism rates have ballooned. In 2014, the most recent year for which data is available, the Centers for Disease Control and Prevention estimated that 1 in 45 children are on the autism spectrum, with symptoms ranging from communication difficulties to repetitive or obsessive behaviors. In 2000, the rate was 1 in 150.

Researchers found that the state mandates, which apply to coverage available on the individual market and some group and employer plans, led to about 12 percent more children getting some kind of treatment for autism. But that's not nearly enough when compared with the number believed to have the condition, they say.

"These numbers are orders of magnitude below" the CDC's autism estimates, said David Mandell, one of the researchers and the director of the University of Pennsylvania's Center for Mental Health Policy and Services Research. "It suggests that a lot of commercially insured kids with autism are not being treated through their insurance."

The shortfall may have significant health consequences, said Daniele Fallin, who chairs the Johns Hopkins University department of mental health and directs Hopkins' Wendy Klag Center for Autism and Developmental Disabilities. For children, it's important to get treatment as soon as possible. If that doesn't happen, the condition will become more complicated — and more costly — to treat in the long run.

"It's a big concern any time you see this kind of treatment gap," said Fallin, who wasn't affiliated with the study.

The researchers used insurance claims data from 2008 to 2012 compiled by the Health Care Cost Institute, a nonprofit organization that focuses on price transparency. They divided the case files of 154,000 children into four groups.

First, they took states with insurance mandates and split the files between children whose coverage was affected and those whose was exempt. Then, in states without insurance mandates, they divided children with commercial insurance who would have been affected had there been a state mandate, and those who would not.

The study did not include Medicaid plans. The claims data was pulled from three large insurance companies in all 50 states plus the District of Columbia.

The researchers then analyzed how many autism-related treatments were billed to insurance, controlling for factors like age, sex, health plan type and calendar month. They found that having a mandate in place increased the level of treatments billed by an average of about 12.2 percent — 9.9 percent during the mandate's first year, 16.6 percent the second year and 17.2 percent in subsequent years.

But questions persist beyond whether patients got some form of care. The researchers are still teasing out what kinds of treatments children who used their insurance actually received. And, Mandell said, it leaves open how good that care actually was.

The takeaway is that insurance mandates are "necessary but not sufficient" for helping people get needed therapies, he said.

That makes sense, said Alycia Halladay, chief science officer at the Autism Science Foundation, which helps fund research. Requiring health plans to cover autism therapies was important as a first step, she argued. But more needs to be done.

"You can't rely on these mandates alone. You can't say, 'OK now, everything's hunky-dory, and everyone's being served the right way,' " she said.

There are a few possible reasons the coverage requirements aren't always translating to people getting treatment.

Even if insurers have to cover care, there is wide variation in how generous the coverage is. Plans can argue that certain services like speech and occupational therapy as well as applied behavioral therapy aren't necessary. Or insurers can require higher cost-sharing, or reimburse at a low enough rate that providers don't participate. Also, not all mandates are equal — some states cap coverage, allow ceilings to the number of visits or limit the age range of beneficiaries.

Even when a mandate is in place, it's often unclear what insurance plans are actually required to pay for, said Halladay. Plus parents of autistic children may not realize what services are covered, she added.

Then there's also the fact that, compared to the need, not enough doctors are familiar with autism treatments, noted Mandell, who co-authored a qualitative study published last November in the journal Autism. The research presented Wednesday will appear this summer in JAMA Pediatrics.

"There are long waiting lists for people to get medical referrals for their autism-related problems. There are wait lists all over the place. And that's because there aren't enough people trained," Halladay said. "It's not an easy problem to solve."

That could have cost implications, too.

Insurance plans have argued that mandates could drive up premiums. So far, they've resulted in increases of about 1 percent, according to the National Conference of State Legislatures, but those could grow if plans cover more services or autism rates keep climbing. That could also color whether other companies not included in the mandates choose to cover these services. For instance, the laws don't affect large companies that are self-insured, though some, like Home Depot and Microsoft, provide autism treatment coverage.

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

When Time Behind Bars Cuts Addiction Treatment Short

NPR Health Blog - Wed, 05/11/2016 - 9:16am
Joseph Daniel Fiedler for NPR

Michael Burghardt couldn't sleep. His legs were shaking, his bones ached and he couldn't stop throwing up.

Burghardt was in the Valley Street Jail in Manchester, N.H. This was his 11th stay at the jail in the last 12 years. There had been charges for driving without a license, and arguments where the police were called. This time, Burghardt was in after an arrest for transporting drugs in a motor vehicle.

Burghardt, 32, has been taking methadone for 10 years to help his recovery from heroin addiction. Each time he's been in the jail, he says, he hasn't been able to continue with the medication-assisted treatment. He hasn't been able to taper off the medicine either, which means he's had to go straight into detox.

Four times after he was released from jail, Burghardt says, he relapsed and started using heroin again.

Methadone is a long-acting narcotic that can help people stay off heroin. But the physical symptoms of withdrawal from methadone can last longer than those from the drug it replaces. "You feel like you're basically dying," Burghardt says.

The World Health Organization recommends that incarcerated people like Burghardt continue methadone treatment. And if Burghardt lived in most other Western nations – or Iran, Malaysia or Kyrgyzstan for that matter — he likely would be able to do so.

But in the United States, the only people likely to receive methadone or other opioid- replacement drugs, such as buprenorphine, while incarcerated are pregnant women.

That's the case at the Valley Street Jail. "It's for the safety and health of the child more than anything," says Denise Ryan, the jail's administrator for health services. Withdrawal from opioids can cause miscarriage.

According to a survey published in the journal Drug and Alcohol Dependence, more than half of the nation's prison systems offer methadone to people behind bars. But most restrict access to pregnant women and, occasionally, those with chronic pain.

Far fewer jails and prisons provide patients with buprenorphine, another opioid replacement drug. Drugs like methadone and buprenorphine are "summarily stopped when people are incarcerated," says Dr. Josiah Rich, a professor of medicine at Brown University and co-director of the Center for Prisoner Health and Human Rights. "That's the prevailing practice," but, he says, it's one that should change.

Although involuntary opioid withdrawal isn't directly fatal for adult drug users, it can be "indirectly fatal," says Dr. Heidi Ginter, assistant chief medical officer for Community Substance Abuse Centers, a chain of treatment centers in New England. As inmates detox from methadone, their tolerance for opioids goes down while their cravings go up. That sets them up for an overdose after they're released, says Ginter. She says a third of her clients spent time behind bars before they sought treatment.

Burghardt knows how it feels. "You're dying for a fix," he says. Scheduling an appointment at a methadone clinic, however, takes days or even weeks. "So you end up relapsing and using again," he says. Burghardt says this cycle took the lives of three of his friends recently.

In fact, research shows incarcerated drug users are as many as eight times more likely to die immediately after release than at other times in their lives. And, patients who terminate methadone treatment are eight to nine times more likely to die immediately thereafter than those who don't.

Sometimes, Ginter says, clients end up behind bars while in her care. After undergoing prolonged and painful detox from methadone while incarcerated, she says, many choose heroin over treatment after they get out. "I'm basically having a conversation with somebody where they're opting for the lesser of two evils," she says. "That feels really hard."

Ginter's experience isn't unique. In one study, inmates who received methadone behind bars were eight times more likely to seek treatment and stay off drugs during the month following their release than those who received only counseling. In another study, drug users who were not incarcerated were also more likely to seek out methadone treatment when they knew they could continue it behind bars: an indication of how inevitable incarceration can feel for people addicted to illegal substances.

Still, corrections administrators say they prefer abstinence-based treatment programs. They worry that methadone, even when administered as a liquid, can be retained in inmates' mouths then sold and abused behind bars. Jails and prisons in New Hampshire already face smuggling of Suboxone, a variety of buprenorphine that is manufactured as a papery film, making it easy to conceal in books and mail.

There are practical concerns. Although methadone is inexpensive, facilities would either have to become licensed to administer it or transport patients to methadone clinics, as many do for pregnant women.

Ginter says for her, those reasons don't cut it. "This is a human rights issue," she says. "If somebody with diabetes eats a piece of cake at a birthday party, they don't get incarcerated. And their doctor doesn't say, 'Now I'm not going to prescribe your insulin because you ate a piece of cake.' "

Copyright 2016 New Hampshire Public Radio. To see more, visit New Hampshire Public Radio.
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