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Invisibilia: Is Your Personality Fixed, Or Can You Change Who You Are?

NPR Health Blog - Fri, 06/24/2016 - 3:00am
Kristen Uroda for NPR

Editor's note: This is an excerpt from the latest episode of the Invisibilia podcast and program, which is broadcast on participating public radio stations. This story contains language that some may find offensive.

Additional Information: Listen To The Episode

This is the story of a prisoner who committed a horrible crime and says he's no longer the same person who did it. It's also the story of why it's so hard for us to believe him.

In the early 1960s, a young psychologist at Harvard University was assigned to teach a class on personality. Though Walter Mischel was excited to prove himself as a teacher, there was one small problem: He didn't happen to know very much about personality.

"So, realizing I had to teach this stuff, I decided to look at the literature," says Mischel, who now works at Columbia University. "And I found myself enormously puzzled."

Mischel, like pretty much every other psychologist at the time, had some basic assumptions about personality. The first was that people had different personalities, and that those personalities could be defined by certain traits, such as extroversion, conscientiousness, sociability.

At the time, personality researchers liked to argue about which traits were most important. But they never argued about the underlying premise of their field — that whatever traits you had were stable throughout your life and consistent across different situations.

"For example, a friendly person is someone who should be friendly over time," Mischel says. "So if he's friendly at 20, he should be friendly at 25. And if he's friendly, he should be friendly across most situations in which friendliness is a reasonable and accepted possible way of being."

Thus an honest person would behave like an honest person no matter where they went or how much time passed, and a criminal would remain a criminal.

But when Walter Mischel sat down to do his literature review, he didn't find much support for the idea that personality is stable. "I expected to find that the assumptions would be justified," he says, "and then I started reading study after study that found that actually the data didn't support it."

Psychologist Walter Mischel says that if you think his famous marshmallow test means that people's traits are fixed from birth, you're wrong.

David Dini/Courtesy of Columbia University

One enormous study on honesty in children was done way back in 1928. The researchers, Hugh Hartshorne and Mark May, had put thousands of children in different settings where they had the opportunity to cheat or steal.

"And it came out with results that were shocking at the time," Mischel says. The same child who cheated in math class could be honorable in a different class — no cheating. "They were not consistently anything," he says. "They were inconsistent in their honesty."

The studies Mischel was reviewing were all looking for consistency in personality across situations — and none of them were finding it.

And researchers seemed to be ignoring this, dismissing the fact that study after study was finding no consistency in personality.

Mischel ended up writing a book called Personality and Assessment in 1968 that challenged some of the most basic ideas we have about the role personality plays in our lives. He said that the idea that our personality traits are consistent is pretty much a mirage.

But that idea was so hard for people to wrap their heads around. Mischel tried in many ways to make it stick, but never did. In fact, the irony of Walter Mischel's career is that he himself is remembered as proving the very opposite of what he actually believes.

It has to do with Mischel's most famous experiment, called the marshmallow test, which he first conducted in 1960. You can still find videos of it on YouTube. Mischel would give a small child a marshmallow, a cookie or a pretzel, telling her or him that they could eat it now — or if they could wait for a few minutes, they'd get two marshmallows or cookies. Then he left the room. Given that the children in the study were 4 to 6 years old, the marshmallow often got gobbled up.

But sometimes Mischel told the child ahead of time that she could just pretend that the marshmallow was not really there. Then "the same child waits 15 minutes," he says now. "It's a very small change that's been made in how the child is representing the object — is it real or is it a picture? And by changing the representation, you dramatically change her behavior."

The vast majority of children in Mischel's study were able to delay gratification when they reframed their interpretations of the situation in front of them.

The point of the marshmallow test was to show how flexible people are — how easily changed if they simply reinterpret the way they frame the situation around them. But that's not the moral that our culture drew from the marshmallow study. We decided that those traits in the preschoolers were fixed — that their self-control at age 4 determined their success throughout life. They're happier, have better relationships, do better at school and at work.

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The marshmallow test became the poster child for the idea that there are specific personality traits that are stable and consistent. And this drives Walter Mischel crazy.

"That iconic story is upside-down wrong," Mischel says. "That your future is in a marshmallow. Because it isn't."

So how did we get it so wrong? Psychologists have come up with all sorts of theories. One is that the consistency we see in people's personalities is an illusion that we create. No matter how people behave, we shoehorn them into the idea we already have of them.

Lee Ross, a psychologist at Stanford University, has another intriguing idea. He had read Mischel's book on personality when it came out in the 1960s and immediately understood the profound puzzle it presented. He thinks we actually are seeing consistency in human behavior, but we're getting the reason for it wrong. "We see consistency in everyday life because of the power of the situation," he says.

Most of us are usually living in situations that are pretty much the same from day to day, Ross says. And since the circumstances are consistent, our behavior is, too.

But sometimes the dynamics at work and home ask us to be different people. The violent gangster at work may be the kind father at home. In the 1960s and 1970s, a number of experiments were done where the researchers put people in an extreme situation to see if it would change their behavior.

One of the most infamous is the obedience experiment done in the 1960s, by Stanley Milgram, a social psychologist at Yale University who was intrigued by the concepts of conformity and authority. In the experiment, a "learner" was wired with electrodes, and a "teacher" was told to give the learner an electric shock every time they got an answer wrong. The learner wasn't actually getting shocked; the part was played by actors who pretended to be hurt. But the teachers didn't know that, and they kept administering what they thought were stronger and stronger shocks, even as it made them very uncomfortable, because they were in a situation that required them to do it.

The point, Ross says, is that ultimately it's the situation, not the person, that determines things. "People are predictable, that's true," he says. "But they're predictable because we see them in situations where their behavior is constrained by that situation and the roles they're occupying and the relationships they have with us."

Even though these experiments were done almost 50 years ago, we're still struggling with the notion that human personality and behavior isn't a constant. Consider the story of Delia Cohen. Like most of us, she believed in a core consistency in humans; she'd seen it in people her whole life. The good people were good; the bad, bad.

Cohen had been doing some work for the TED organization, the one that does TED talks, and had heard about a TEDx event that was put on in a prison, by prisoners. So she went to Marion Correctional Institution in Marion, Ohio, to see it.

Dancers at the Marion Correctional Center in Marion, Ohio, top, perform onstage at a TEDx event in 2015. Attendees and speakers at the event included prison inmates and visitors.

Courtesy of Tessa Potts/Healing Broken Circles

One of the first prisoners she met was a man named Dan. He had the word "hatred" tattooed on the back of his neck.

But as soon as she started talking to Dan, Cohen completely forgot about the tattoo. His personality didn't seem to have anything to do with hatred.

The prisoners' presentation included poetry and music. Cohen liked it so much that she told Dan she wanted to work with him to re-create it in prisons across the country. Then a friend of hers Googled Dan and started reading descriptions of his crime to Delia. It turned out that Dan was a sexual predator who had raped a woman at knife point. Cohen says: "I was absolutely horrified."

She went home and tried to figure out how she should think about Dan (the prison asked us not to use his full name so it would be less difficult for his victim). Was he the kind, creative, competent person she had met, or the brutal, sadistic personality who had committed the crime?

To find out, she decided to ask him. She sent him an email.

"I've had a lot of people contact me," Dan says. "I don't know if they see some of my poetry online or they see something about me and they write me." Then at some point those correspondents Google Dan like Cohen's friend did, and they vanish. "So I'm kind of used to people having adverse reactions."

Dan emailed Cohen back, saying he was willing to talk with her about his crime. But the conversation didn't go well. "It was an incredibly awkward conversation," Cohen says. "Basically he said he was a horrible, horrible person."

After talking for almost an hour, Cohen didn't feel like she was any closer to answering the question that plagued her: Was there something in Dan's personality that caused the crime, and did that thing still exist?

We decided to ask Dan ourselves.

When he committed the crime, Dan says, "I was a real live piece of s***." But he says that person has ceased to exist.

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It happened six or seven years into prison, Dan says. His best friend in prison had stolen something from another inmate, and Dan, who had a reputation for being violent, told the other inmate to back off. Then he went back to his best friend and beat him up.

"I remember while I was doing it, he was asking me to stop, and I was like, 'How could you be so stupid? I'm going to beat the stupid out of you.' "

Dan remembers looking down at the man he was beating, and thinking, "Whoa, what am I doing? This is someone I say I love. This is someone I care about. This is someone I say I treat like family. And this is how you treat family?"

Dan says that's the last time he was physically violent. He decided to quit the group of guys he hung out with in prison. He physically isolated himself. It was hard. "It was easier to be a no-good m*****-f***** than it was to be alone."

Dan says it took him about two years to reconfigure his personality. He wanted to be less aggressive, less impulsive, more conscientious. He says he's now a different person. But he knows most people won't see him that way.

"I'm forever going to be a criminal," he says, "which I'm not. I've become a completely different human being at this point."

Delia Cohen had a hard time accepting that Dan had changed; you hear those words so often from people, and they're often not true. But she decided to suspend her disbelief and work with him on the TEDx project. They started exchanging emails.

Cohen knew that there are people whose horrible crimes really do emanate from their personalities, such as psychopaths. But after more than a year of working with Dan, Cohen felt sure he wasn't a psychopath.

As she tried to figure out if something rotten remained in Dan and the other prisoners she worked with, she decided to reject the frame of reference she used to think about people. "All these people I've met that have done really horrible things are not horrible people," Cohen says. "They're not bad people. Which was shocking to me."

She's still working with prisoners on the TEDx project, and she says she no longer even thinks about their crimes. "I'm more curious about who they are now."

Even though Dan says he's no longer the man who committed the crime, he knows why he's in prison. "I have to atone for my crime. But I realize now I'm just paying for someone else's debt. The person who committed the crime no longer exists."

There's something more than a little disturbing about that sentence — being in prison now for someone else's crime. But just because it's disturbing doesn't mean it can't be true.

"Maybe we're not thinking right about who we are and what we could be," says Walter Mischel.

It's no wonder, Mischel says, that we're drawn to this idea that personality is important and stable. It makes us feel better. "I mean, how can you marry anybody unless you believe that they are basically going to stay the way that you have them pictured now?" he asks. "We like to feel like we're living in a stable world."

We realize the outside world can change in a heartbeat, "but when it comes to human beings, we really don't have tolerance for realizing that there is an enormous amount of instability."

Still, we're not slaves to that instability. Traits and life situations both affect our behavior, Mischel says. But so do our minds.

The beliefs, assumptions, expectations that you've gotten from your friends, family, culture — those things, Mischel explains, are the filter through which you see the world. Your mind stands between who you are, your personality and whatever situation you are in. It interprets the world around it, and how it feels about what it sees. And so when the stuff inside the mind changes, the person changes.

"People can use their wonderful brains to think differently about situations," Milgram says. "To reframe them. To reconstruct them. To even reconstruct themselves."

Copyright 2016 NPR. To see more, visit NPR.
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Depressed Teen's Struggle To Find Mental Health Care In Rural California

NPR Health Blog - Thu, 06/23/2016 - 5:36pm
Depressed Teen's Struggle To Find Mental Health Care In Rural California Listen· 3:54 3:54
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June 23, 20165:36 PM ET Heard on All Things Considered

From

Doctors who diagnosed Shariah Vroman-Nagy with bipolar disorder wanted to keep her in the hospital for treatment, but her insurance company wouldn't cover the stay.

Andreas Fuhrmann for KQED

There's a hot pink suitcase on the floor of Shariah Vroman-Nagy's bedroom. The 18-year-old is packing for a trip to Disneyland, one of several she takes with her family every year.

"Let's see, I need a hairbrush," she says, moving past the collection of Mickey Mouse ears on her dresser and glancing at the inspirational quotes from Marilyn Monroe on the wall.

The lyrics to a song called "Smile" hang in a frame over her bed.

"My mom made me that when I was struggling," says Vroman-Nagy, "because that's the song that I would listen to. Michael Jackson did a version of it, which I love."

When she feels her depression creeping in, she sings it to herself.

Smile, though your heart is aching
Smile, even though it's breaking
If you smile through your tears and sorrow
Smile and maybe tomorrow
You'll see the sun come shining through, for you.

Three years ago, it was in this room, filled with porcelain dolls and stuffed animals, that Vroman-Nagy tried to kill herself. She was 15, a freshman in high school.

"Everything piled up, piled up, piled up until I just couldn't handle it anymore," she says. "So I had my antidepressants and I took a handful of those. But then I thought better of it, and I told my mom. She took me to the emergency room."

There's no psychiatric hospital that specializes in adolescents in Redding, the small city in far Northern California where Vroman-Nagy lives. So she was taken from the local ER to a hospital in Sacramento, an hour and a half drive to the south. She was there for eight days.

The doctors diagnosed her with bipolar disorder. They wanted to keep her longer, but they told her the insurance company wouldn't cover it.

"I didn't feel like I was ready because I had just been put on new medications," she says. "In the past I've had reactions to medications, and some have not worked. So I wanted to wait and stay for observation a little bit longer."

Vroman-Nagy wasn't alone in feeling that she was sent home too soon. Since 2010, the state has received almost 900 appeals from patients saying their insurer unfairly denied inpatient mental health treatment, according to data from the Department of Managed Health Care, the main health insurance regulator in the state. The department overturned 47 percent of those decisions.

Insurers are allowed to deny coverage for certain treatments, if they determine that the care is not "medically necessary." This determination is based on evidence-based clinical standards in both mental and medical care, but it has become a key battleground for mental health advocates.

They say insurers are able to deny mental health treatments more often than other medical treatments, because it's harder to prove when mental health care is medically necessary.

Determining the best treatment for depression, bipolar disorder, or anxiety disorders relies heavily on the subjective report of the patient, so it can be difficult to demonstrate how ill a person is.

"There aren't blood tests in mental health, there aren't X-rays in mental health," says Keith Humphreys, a Stanford psychiatrist and former White House adviser on mental health policy. "So it's easier to deny care for mental health than it is for things we've got physical evidence for."

Outside the hospital, care still difficult to find

After Vroman-Nagy went home, the hospital helped her find a therapist to continue the work she had begun in the inpatient unit. But the insurance company, Anthem Blue Cross, said no to that, too. It said the therapist wasn't part of its network.

"We spent quite a long time with the insurance company battling them trying to get them to cover visits," Vroman-Nagy says.

Shariah Vroman-Nagy talks to her father, Tom Nagy, about a Mother's Day gift for her mom.

Andreas Fuhrmann for KQED

Anthem wanted her to see someone on its list of approved in-network providers, Vroman-Nagy says. At the time, that list was just six people, a common problem in rural parts of the country. When Vroman-Nagy started calling them, she says they either told her their schedules were full or they were retired. So she decided to stick with the out-of-network therapist.

Her father, Tom Nagy, supported the decision. "Because at that point, I mean, you're talking possible life and death issues," he says. "That was my approach, to pay for it. Run up the charge cards."

He ended up paying thousands of dollars. Nagy is a teacher, and his wife is a nurse. They couldn't afford to keep doing that.

By law in California, insurers are required to make special arrangements for patients to see an outside therapist if there are none in the plan, and they have to provide the care at the same copay or coinsurance as an in-network clinician. They can't charge extra.

It's unclear why Nagy didn't get that help at first. He says he had to fight and fight with the insurance company until he was finally reimbursed.

"It was literally a yearlong process," he says. "As a parent, it's hard enough to deal with these situations and be supportive, but then you get the whole financial thing, it just adds a whole other layer. It's frustrating."

In a statement, Anthem Blue Cross said it is "committed to providing access to high quality and affordable health care, including mental healthcare." It has a variety of resources to help people find the best provider for them, the statement continues, including an online listing of available mental health providers, and customer service staff who can help with a search.

The company also launched an online psychology service earlier this year, called LiveHealth Online Psychology, so patients who live in rural areas where it can sometimes be hard to find a clinician can "talk face-to-face with a licensed therapist or psychologist through high-definition video on your smartphone, tablet or computer with a webcam."

Looking toward the future

It's Vroman-Nagy's spring break from college, and the preparations for the family trip to Disneyland continue. She says she really needs the vacation.

"They call it the happiest place on earth, and I really do feel that it makes me happy when I go," Vroman-Nagy says. "I'm glad we get to go this week because I have been having a little depression going on."

She and her parents run some errands before they leave town, including a stop at Wal-Mart to stock up on snacks for the nine-hour drive.

"I have a question," Vroman-Nagy says to the cashier. "You used to have Mickey Mouse-shaped cheese. Do you not carry it anymore?"

Instead, she got Frozen-themed cheese sticks, with characters from the hit Disney film on the package. The radio in her car is primed with a series of Disney soundtracks, from Tarzan to Beauty and the Beast, songs Vroman-Nagy knows well from her days singing with a show choir in high school.

Overall, Vroman-Nagy is doing much better. She works part time at the local In-N-Out Burger, and she is training to volunteer for a suicide hotline. She is also studying psychology and music at the local junior college.

She plans to become an adolescent therapist one day. But first, she'd like to be a character singer at Disneyland.

"I would love to be in their entertainment," she says, and imagines herself in a princess costume singing and dancing in the park's stage shows or parades. "That would be my dream."

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

Copyright 2016 KQED Public Media. To see more, visit KQED Public Media.
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A Protein That Moves From Muscle To Brain May Tie Exercise To Memory

NPR Health Blog - Thu, 06/23/2016 - 1:33pm
A Protein That Moves From Muscle To Brain May Tie Exercise To Memory Listen· 2:52 2:52
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June 23, 20161:33 PM ET Heard on All Things Considered

Researchers have identified a substance in muscles that helps explain the connection between a fit body and a sharp mind.

When muscles work, they release a protein that appears to generate new cells and connections in a part of the brain that is critical to memory, a team reports Thursday in the journal Cell Metabolism.

The finding "provides another piece to the puzzle," says Henriette van Praag, an author of the study and an investigator in brain science at the National Institute on Aging. Previous research, she says, had revealed factors in the brain itself that responded to exercise.

The discovery came after van Praag and a team of researchers decided to "cast a wide net" in searching for factors that could explain the well-known link between fitness and memory.

They began by looking for substances produced by muscle cells in response to exercise. That search turned up cathepsin B, a protein best known for its association with cell death and some diseases.

Experiments showed that blood levels of cathepsin B rose in mice that spent a lot of time on their exercise wheels. What's more, as levels of the protein rose, the mice did better on a memory test in which they had to swim to a platform hidden just beneath the surface of a small pool.

The team also found evidence that, in mice, cathepsin B was causing the growth of new cells and connections in the hippocampus, an area of the brain that is central to memory.

But the researchers needed to know whether the substance worked the same way in other species. So they tested monkeys, and found that exercise did, indeed, raise circulating levels of cathepsin in the blood.

Next, they studied 43 people who hadn't been getting much exercise.

"The people were university students that were couch potatoes — they didn't exercise much," says Dr. Emrah Duzel, a neurologist and team member from the German Center for Neurodegenerative Diseases.

Half the students remained sedentary. The other half began a regimen of tough treadmill workouts several times a week.

"Within four months, we really made them fit," Duzel says.

And, just like mice, the students who exercised saw their cathepsin B levels rise as their fitness improved. They also got better at a memory task: reproducing a geometric pattern they'd seen several minutes earlier.

But the clincher was the link between memory improvement and cathepsin levels, Duzel says.

"Those individuals that showed the largest gains in memory also were those that had the largest increase in cathepsin," he says.

Of course, cathepsin is probably just one of several factors linking exercise and brain function, van Praag says.

"I don't think we have fully explained how exercise improves memory," she says, "but I think we've made a significant step forward."

Also, cathepsin has a dark side. It's produced by tumor cells and has been linked to the brain plaques associated with Alzheimer's. So, trying to artificially raise levels might not be a good idea, van Praag says.

However, van Praag says she's trying to keep her own cathepsin levels up naturally by jogging — when she can.

"It takes a lot of time and effort to do all this research," she says. "So sometimes the exercise regimen suffers a little bit."

Copyright 2016 NPR. To see more, visit NPR.
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Bad News For Kids Who Don't Like Flu Shots

NPR Health Blog - Thu, 06/23/2016 - 12:43pm

It's time to brace the kids who don't like getting their flu shots for some disappointing news.

A panel of vaccination experts advising the Centers for Disease Control and Prevention made the surprising recommendation late Wednesday that FluMist Quadrivalent, the nasal spray vaccine that protects against influenza, should no longer be used.

It turns out that the spray — which is particularly popular among kids, pediatricians and parents who don't like seeing their little ones cringe at the sight of a needle — hasn't worked as well as the old-fashioned shot during the past few flu seasons.

Before then, FluMist protected against influenza as well as, or even better than, the flu shot. The panel's recommendation against the spray was informed by data collected for children ages 2 through 17 that showed no evidence the nasal spray vaccine offered protection during last year's flu season. Data also showed that FluMist performed poorly in the prior two flu seasons.

The recommendation by the Advisory Committee on Immunization Practices has to be reviewed and approved by the CDC director before it becomes official policy, but that's usually a formality.

Scientists don't know why the nasal spray vaccine isn't working anymore, says Dr. William Schaffner, an infectious disease specialist at the Vanderbilt University School of Medicine and longtime member of the Influenza Vaccine Working Group that offers guidance to the CDC's panel of vaccination experts.

"The company [that manufactures FluMist], the FDA, and other investigators still haven't been able to put their scientific finger on the exact reason, but there are several studies that have indicated that in the United States the vaccine has underperformed in a very substantial way," he says.

Schaffner did note, however, that the spray began performing poorly when all flu vaccines were adjusted to protect against four influenza strains instead of three.

Flu vaccine manufacturers had planned to supply as many as 176 million doses of vaccines for this upcoming season. MedImmune, a subsidiary of AstraZeneca and the maker of FluMist, planned to provide about 8 percent of this total.

In response to the recommendation against FluMist, AstraZeneca said in a statement that it "is working with the CDC to better understand its data to help ensure eligible patients continue to receive the vaccine in future seasons in the U.S."

According to Schaffner, companies that offer flu vaccine in shot form say they'll be able to produce enough to cover kids who would have opted for the nasal spray version.

Schaffner understands that the decision to recommend against the nasal spray will be disappointing for many. "There will be grumbling among children, parents and pediatricians," he says. "This was a sad, very discomforting decision, but I fully believe it was the correct decision."

And for the truly shot averse, he offers some hope. "There is a lot of work being done to try to develop methods to deliver vaccines different from the traditional needle and syringe method. For example, a patch with many microneedles that doesn't hurt — that would be nice," he says.

Until an effective needle-free flu vaccine arrives, the CDC still recommends the injectable vaccine for just about everyone 6 months and older. Shots are no fun. But neither — most of us agree — is the flu.

Copyright 2016 NPR. To see more, visit NPR.
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The Challenge Of Taking Health Apps Beyond The Well-Heeled

NPR Health Blog - Thu, 06/23/2016 - 8:58am

The Text4Baby app sends free, periodic text messages in Spanish or English to pregnant women and new moms about prenatal care, labor and delivery, breastfeeding, developmental milestones and immunizations.

Kristin Adair/NPR

When you hear the phrase "digital health," you might think about a Fitbit, the healthy eating app on your smartphone, or maybe a new way to email the doctor.

But Fitbits aren't particularly useful if you're homeless, and the nutrition app won't mean much to someone who struggles to pay for groceries. Same for emailing your doctor if you don't have a doctor or reliable Internet access.

"There is a disconnect between the problems of those who need the most help and the tech solutions they are being offered," said Veenu Aulakh, executive director of the Center for Care Innovations, an Oakland, Calif.-based nonprofit that works to improve health care for underserved patients.

At most digital health "pitchfests," it's pretty much white millennials hawking their technology to potential investors. "It's about the shiny new object that really is targeted at solving problems for wealthy individuals, the 'quantified-self' people who already track their health," Aulakh said. "Yet ....What if we could harness the energy of the larger innovation sector for some of these really critical issues facing vulnerable populations in this country?"

A small but growing effort is underway to do just that. It's aimed at using digital technologies – particularly cellphones – to improve the health of Americans who live on the margins. They may be poor, homeless or have trouble getting or paying for medical care even when they have insurance.

The initiatives are gaining traction partly because of the growing use of mobile phones, particularly by lower-income people who may have little other access to the Internet.

The Affordable Care Act and the expansion of Medicaid have added millions of previously uninsured people to the nation's health care system, including community health clinics that serve poor and largely minority populations, according to a California Health Care Foundation report. (California Healthline is an editorially independent publication of the California Health Care Foundation.)

In California alone, the number of people on Medi-Cal, the state's version of the Medicaid program for the poor, rose from 7.5 million in 2010 to 12.4 million by early 2015. Many Americans remain uninsured, however, because they live in states that have declined to expand Medicaid eligibility.

Health advocates say it's important to tailor digital health technologies to lower-income people not only to be fair, but because they're more likely to have chronic illnesses, like diabetes, that are expensive to treat.

Health-care providers have incentives as well. They are being rewarded financially under the Affordable Care Act, Medicare and Medicaid for keeping patients healthy, and this goes beyond simply performing medical procedures and prescribing drugs.

For now, experiments targeting low-income people are a tiny part of the digital health industry, which racked up an estimated $4.5 billion in venture funding in 2015 alone. Entrepreneurs are still trying to figure out how they're going to get paid by serving this population, and government health programs like Medicaid and Medicare are taking a while to figure out how they're going to pay providers for approaches that don't involve a doctors' visit.

But Jane Sarasohn-Kahn, author of the California Health Care Foundation report, says investors are getting more interested in digital health initiatives for low-income patients simply because there are so many of them.

Investors are eyeing the "fortune at the bottom of the pyramid," she said, much as Walmart profits from selling low-priced items to millions.

"It's now sexy to scale," she says. "If you can have impact [on many people], inexpensively, you can make a lot of money. If we get it right, we can do well and do good."

Some initiatives are simple and cheap, like Text4Baby. The free text-messaging service for pregnant women and new moms offers information in English and Spanish about prenatal care, labor and delivery, breastfeeding, developmental milestones, and immunizations. The specific texts are timed to the baby's due date.

Operated by the nonprofit ZERO TO THREE and the mobile health company Voxiva, Inc., Text4Baby has reached nearly 1 million women since starting in 2010. In one survey, more than half of them reported yearly incomes of less than $16,000.

Other experiments are far more elaborate. In California and Washington state, San Francisco-based Omada Health is testing a version of Prevent, a diabetes and heart disease prevention program that's been modified for "underserved" populations – basically people on Medicaid or who are uninsured. The free program offers patients a digital scale as well as behavior counseling and education, access to a personal health coach and an online peer network.

To adapt the program, the company made it available in Spanish and English and lowered its reading level from ninth grade to fifth grade. Bilingual health coaches were hired, and the educational materials now acknowledge potential food access, neighborhood safety and economic issues that participants may face, said Eliza Gibson, Omada's director of Medicaid and safety-net commercial development.

The scale doesn't require a wireless connection, and the patient just needs to be able to access the Internet for one hour each week, Gibson said.

Omada is enrolling 300 community clinic patients in Southern California and rural Washington in a year-long clinical trial of Prevent, in hopes that the program can demonstrably slow the progress of diabetes.

Patients at other community clinics in California will try out the program but won't be included in the clinical trial, Gibson said. Omada Health is also offering a version called Prevent for Underserved Populations that specifically targets low-income community clinic patients.

Among the people trying out the program is Susy Navarro, an elementary school substitute teacher who lives in the Spring Valley community east of San Diego. After being diagnosed with prediabetes, Navarro, 28, set an ambitious goal to lose 100 pounds. In the meantime, she is taking medication to stave off Type 2 diabetes.

"You name it, I've probably tried it – Weight Watchers, low-fat, low carb, pills, injections, acupuncture," Navarro said. "The first time I try things it goes very well, I feel like I'm very successful, then I wean off and I'm not successful. This program focuses more on life choices that are going to help us out long-term, not just for a little bit."

Navarro described the scale she was given as "sophisticated looking – all black, flat, digital." It has been programmed to her weight profile (she is considered obese), and transmits her weight every morning to the program's counselors.

The program, with its daily weigh-ins, helps her pay attention to what she eats, and her blood sugar levels are declining, Navarro said. She also appreciates the ability to connect online with fellow patients on her "team." "It's very awesome – you get to know the other members and feel like it's a team effort."

As they continue to explore digital health possibilities for underserved patients, developers are learning more about what works and what doesn't, says Sarasohn-Kahn. For example, apps chew up a lot of cellphone data, so many community clinic patients prefer lower-cost text messaging.

At the Petaluma Health Center, a network of community clinics in Sonoma County, Calif., staffers offered free, simplified "loaner" digital devices to patients after a hospital stay to help them avoid complications that could land them back in the hospital.

They first offered an Android tablet to allow for a video visit with a health professional, but patients were reluctant to take it, saying it was hard to hide and could be stolen, said Dr. Danielle Oryn, the network's chief medical information officer.

Then they tried iPhones, in which everything was locked down except the ability to call 911 and a single button triggering the video visit. Those were more acceptable. Still, there were challenges. Would patients, some recuperating at homeless shelters, have access to electricity to charge their phones? Oryn said they had to learn by trial and error. She was surprised and pleased to see seniors accepting the technology. Every loaner iPhone was returned to the clinic.

Oryn's advice to the captains of the digital health industry?

They should "not necessarily come in with too many assumptions. They should come with an open mind and a willingness to listen," Oryn said. "Safety-net people are very excited to have these companies interested in them and to share their experiences."

This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation. Follow Barbara Feder Ostrov on Twitter: @barbfederostrov.

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

Using A Smartphone In Bed Made Women Momentarily Blind

NPR Health Blog - Wed, 06/22/2016 - 5:02pm

Gazing at a smartphone in the dark can give people the feeling that they've temporarily lost vision in one eye.

Joy Sharon Yi/NPR

A 22-year-old woman in England thought she was going blind in one eye. She could always see fine out of her left eye. But on some nights, the right eye failed her. All she could see out of it were vague shapes in the room.

At first, it happened about two or three times a week. Then it started happening every night.

When she went to the doctor, her vision appeared normal. So did brain scans. But it was a disturbing trend.

Around the same time, another woman noticed the same thing. On some mornings, she'd lose vision in just one eye for up to 20 minutes. It was bothersome enough to land her in the emergency room.

Vision loss in one eye can be a sign that a person is having a small stroke, which is why one of the women was put on blood thinners and the other got a brain scan. It can also signal a compressed optic nerve.

But after further investigation, researchers writing Wednesday in The New England Journal of Medicine think the problem is much simpler. They're calling the affliction "transient smartphone 'blindness.' "

"They were looking at their smartphones and they just happened to have one eye covered because they were lying in bed," says Omar Mahroo, an ophthalmologist at Moorfields Eye Hospital in London and an author on the letter.

The first patient had a habit of gazing at her smartphone before falling asleep. She'd lie on her left side and look at the screen primarily with her right eye. Her left eye was often covered by the pillow.

The other patient, who was in her 40s, had similar problems when she woke up in the morning before sunrise and checked the news on her smartphone before sitting up. It had been going on for about a year, ever since she'd injured her cornea. But around the same time, she'd bought an iPhone.

In both cases, nothing bad was going on. Mahroo says. It's just that one retina was adapted to light, and the other to dark.

"The retina is pretty amazing because it can adapt to lots of different light levels, probably better than any camera," he says. "It can reduce its sensitivity, so that when you're on the beach or in the bright snow you can still see relatively well," he says. In the dark on a clear sky, it can adjust to detect extremely dim, far away points of light like stars in the sky.

Retinas constantly adjust when someone leaves a room and enters a slightly dimmer room, or goes inside after being outdoors. But these patients experienced a rare scenario in which that change would actually be noticeable.

Here's how it happens: Light makes the pigment in rod-shaped cells change shape, which changes the electrical current running to another set of cells, which determines how much of a chemical those cells release to nerve cells, which eventually pass the message on to the brain.

After exposure to a bright light, it can take 40 minutes for that process to reset, after which a person can again see in the dark.

The researchers asked the two patients to do a little experiment, viewing the smartphone with just the left eye, then just the right eye on separate occasions. They realized that the eye going temporarily "blind" was always the one that was being used to look at the bright screen. The other eye was likely hidden by a pillow, blocking the light from the screen.

To confirm the hypothesis, Mahroo and his colleagues did a little experiment on themselves. Mahroo went in a dark room and with one eye covered, gazed at a smartphone for 20 minutes before turning off the screen. "It did actually feel quite strange," he says of his self-experiment. "It would be very alarming if you didn't know what was going on."

Then, he connected himself to a device that measured the current flowing in the photoreceptors in his retinas using electrodes. And sure enough, after flashes of dim light, the retina that had been exposed to the screen took longer to adjust to new light settings.

"The retina is like a minibrain in our eye, and we're still trying to understand what goes on there," says Mahroo, who studies the cascade of cell communication that happens constantly between the retina and the brain.

Mahroo says since he and his colleagues made their finding, multiple other patients have said they experienced concerning vision loss because of smartphone use.

So, should you not read a phone with one eye in a dark room? "We don't know of any ill effects," Mahroo says. But it can be jarring.

OK, this next bit has nothing to do with smartphones. But Mahroo says there's an urban legend that speculates that pirates' eye patches could have been used to manipulate vision.

"Wearing an eye patch allows the eye that's covered to be in a constant state of darkness, which keeps the rod cells in that eye at their maximum sensitivity, what we call 'dark adapted,' " Mahroo says. "So simply by wearing an eye patch in bright light, and then, when in the dark, switching it over to the other eye, a pirate should, in theory, have instantly been able to see well in the dark."

That of course presumes that the pirates were hip to the effect, and not merely wearing an eye patch to cover the unfortunate result of a sword fight.

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

A Small Town Bands Together To Provide Opioid Addiction Treatment

NPR Health Blog - Wed, 06/22/2016 - 12:40pm
A Small Town Bands Together To Provide Opioid Addiction Treatment Listen· 4:09 4:09
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June 22, 201612:40 PM ET Heard on All Things Considered

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Like many small towns, Bridgton, Maine, had few resources for people seeking treatment for opioid abuse.

Susan Sharon/MPBN

Bridgton, Maine, is the kind of place people like to go to get away. It's got a small main street with shops and restaurants, a pair of scenic lakes, a ski resort and plenty of hiking trails.

But about 10 years ago, Bridgton, a town of just 5,000 residents, began showing signs of a serious drug problem.

"I had a lot of young people calling the agency to come into treatment," says Catherine Bell, director of Crooked River Counseling, a substance abuse treatment center in Bridgton. "They were using needles. They were shooting heroin and it was like, really bombarded."

Like so many states, Maine is facing a chronic shortage of treatment for opioid addiction. The problem is especially acute in rural parts of the state where there are no addiction doctors and the nearest methadone clinic is at least an hour's drive away.

Bell says she thought that if treatment was going to be successful, patients would need the option of methadone or buprenorphine, commonly known as Suboxone, in addition to counseling. Both medications reduce withdrawal symptoms and cravings for opioids. For a while, getting patients access to medication-assisted treatment seemed hopeless. And then Bell met Dr. Craig Smith, a physician at North Bridgton Family Practice.

Over lunch with Smith one day, Bell blurted out an idea. "I said, 'I'll tell you what. You prescribe. I'll do the counseling for you.' "

Under federal law, doctors have to be trained and certified by the Substance Abuse and Mental Health Services Administration to prescribe Suboxone, and they are limited to treating no more than 100 patients. The Department of Health and Human Services has proposed increasing the number of patients to 200.

But beyond that hurdle, many physicians are reluctant to treat opioid addiction because of how they think it will affect their regular practice. Smith told Bell he'd have to think about it.

"And in the month of August of that year, I had four or five patients that had overdosed and died," Smith says. "One was a 34-year-old mother, two kids. I had no idea. I still feel guilty about that."

Dr. Craig Smith works with counselor Catherine Bell to provide medication-assisted treatment at North Bridgton Family Practice.

Susan Sharon/MPBN

So in 2009, with the support of his hospital and Bell's assistance, Craig Smith started prescribing Suboxone. At the time, few primary care doctors in the area were doing it. Pretty soon Smith's wife, who works in the same family practice, had joined him in providing medication-assisted treatment, but not without some misgivings.

"My initial feeling was — you know, I don't want those people in my office," says Dr. Jennifer Smith. "I run a family practice. I see a lot of kids. I don't want them here."

Smith says she finally realized it wasn't new patients who needed help; it was patients she was already treating, including pregnant women. She just didn't know they were using drugs. So now the practice offers medication as well as intensive outpatient counseling and group therapy.

Both Smiths say offering the service has opened a window on their patients' lives, and both say they would recommend that other primary care doctors take on the same work.

"The key for us was involving the counseling group, Crooked River," Craig Smith says, "having them screen patients and figure out who are the best candidates for treatment."

It's the kind of experience policymakers are hoping catches on as a way to address the shortage of drug treatment around the country.

Catherine Bell of Crooked River Counseling says offering the service and making it work financially is "really, really hard." Because her practice doesn't get grant money and isn't affiliated with a larger hospital, she can't offer treatment to people who don't have insurance unless they can afford to pay cash for a few sessions at a time.

On the other hand, the doctors who prescribe medications have more flexibility, Bell says, because their practice is owned by Bridgton Hospital, which does offer some charity care. About 90 percent of patients are covered under the state's Medicaid program.

At the women's support group that meets twice a month at North Bridgton Family Practice, the women say they like the convenience of having their medical care and counseling under one roof. It's easier to schedule appointments. There's better coordination of their treatment. More importantly, the patients say they now know they can be upfront about their addiction.

Jennifer Smith says offering drug treatment has made her a better doctor, and she says she can see that what she's doing is making a difference.

"I mean, you see people going back to school, going back to work, staying out of jail, taking care of their kids, getting DHS out of their life," she says.

Not everyone who enters treatment at the family practice is successful. Counseling is mandatory. So is drug screening. And those patients who can't or won't comply are dropped from the program.

Copyright 2016 Maine Public Broadcasting Network. To see more, visit Maine Public Broadcasting Network.
Categories: NPR Blogs

Asthma-Free With No Hay Fever? Thank Your Older Sibling

NPR Health Blog - Wed, 06/22/2016 - 9:17am

Younger siblings seem to have an immune advantage as early as 1 month of age, which may help explain where they get the energy to tease older siblings.

Rebecca Schortinghuis/Getty Images

Older siblings may be good for something after all. Infants whose mothers have been pregnant previously may have more active immune systems that protect them against asthma and hay fever, according to a paper in the June issue of Allergy.

Researchers have noted a positive relationship between older siblings and allergies since at least 1989, when a study following British children for 23 years found that the more older siblings a child has, the less likely she or he will be allergic to airborne particles like dust and pollen. But exactly how older siblings boost younger sibling health has continued to flummox scientists.

To learn more about the mechanism behind this resilience, Danish researchers studied 571 1-month-old babies. Like many things concerning small children, the study involved snot — the researchers collected samples from each infant's nose. They found that infants whose mothers had been pregnant before had significantly higher levels of signal proteins associated with triggering immune response.

This immune "signature" may make younger siblings' systems "more alert" to possible sources of infection, according to systems biologist Susanne Brix Pedersen of the Technical University of Denmark, who co-authored the paper. While these proteins cause cells to react to foreign microorganisms, the proteins are not the "Type 2" immune chemicals that help trigger allergic reactions. The researchers think younger siblings may therefore be primed to respond to foreign objects like pollen through means other than allergy.

"We train our immune system in very early life," says Brix Pedersen. "Being able to train it seems to protect us for later in life."

The researchers are not sure if older siblings benefit babies before birth, after, or both. Brix Pedersen says that after a first pregnancy, a mother's immune system may recognize another fetus from the same father, and therefore treat it differently, potentially leading to changes in the way subsequent babies' immune systems develop.

In the Danish study, the researchers found that the more time that had passed between pregnancies, the lower the levels of helpful immune proteins younger siblings had. This decreased benefit over time could suggest that previous pregnancies change the chemistry inside the womb and that these changes wear off with time.

On the other hand, Brix Pedersen points out that the pattern could also be explained by post-birth benefits. Older siblings may be at their dirtiest when young, and therefore the most helpful in exposing younger siblings to microbes and building up a stronger immune response. Once older siblings age and embrace personal hygiene, they may bolster babies' immune systems less. The researchers intend to continue studying the infants as they age to see if their immune signatures do indeed protect them against asthma and allergy as expected.

"I'm more biased that it's in utero, happening before birth," says Dr. Wilfried Karmaus, a professor of epidemiology at the University of Memphis School of Public Health who was not involved in the study. Citing the impact of birth order on obesity and diabetes, Karmaus says, "We have to consider how to apply this knowledge to prevent allergies. How can we mimic chemistry to make it as though the first pregnancy is the second pregnancy?"

Older siblings may get the raw end of the immune system deal, but older sibling Morgan Rees, who was not involved in the study, isn't bitter. Rees, a 19-year-old rising sophomore at the University of Pennsylvania, says she doesn't begrudge her younger brother his health, though she has asthma and he does not.

"My brother and I are both cross-country runners," says Rees, whose asthma is exercise-induced. After she realized she had asthma in high school, she says she kept running the 1-mile event in track, but her times did not improve, and her asthma was "super disruptive." Still, she enjoys cheering on her brother, who is now a senior in high school and asthma-free.

"I helped get him into running," Rees says. "I'm so proud of him now. He's getting really fast, which is fun to watch."

A stronger immune system, it seems, does not necessitate stronger sibling rivalry.

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

Can Doctors Learn To Perform Abortions Without Doing One?

NPR Health Blog - Tue, 06/21/2016 - 3:41pm
Can Doctors Learn To Perform Abortions Without Doing One? Listen· 8:05 8:05
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June 21, 20163:41 PM ET Heard on All Things Considered

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Medical residents training to be OB-GYNs in Texas don't have many places where they can learn how to perform abortions.

Carrie Feibel/Houston Public Media

Abortion is one of the more common procedures performed in the U.S., more common even than appendectomy. But as clinics in Texas close, finding a place in the state where medical residents training to be OB-GYNs can learn to do abortions is getting harder.

"There are places in Texas where there are OB-GYN residents who can't get anywhere to be trained," said a senior doctor at one Texas clinic who is also a medical school professor. The physician asked not to be named to avoid backlash from anti-abortion groups and politicians.

Clinics that used to perform abortions have closed recently in Lubbock, Odessa and other Texas cities. But the professor's clinic, which still does abortions and trains some OB-GYN residents, can't take up the slack.

"We've been approached by many different residency programs about the ability to train their residents," she said. "Unfortunately, we just don't have the capability to train everyone."

The day we spoke, the doctor was spending the afternoon at the clinic, supervising a third-year resident. The resident agreed to be identified by her middle name, Jane.

During her four years of residency, Jane spent about a month doing rotations at this clinic. The experience improved her medical skills, she said, but also gave her a new political perspective on what it means to be a doctor.

"It makes it even more obvious how important it is for women to have access to abortions," she said. The rotation made her more committed to providing abortions throughout her career, she added. "If I think a woman needs access and I have the skills to provide access, I should," she said.

Shots - Health News Politics Makes Abortion Training In Texas Difficult

Jane listened as the senior doctor prepared her for the next patient: "She's 21 years old, and this is her first pregnancy. She is at about eight weeks today. Do you have any questions about what we're going to be doing or the procedure?"

Later, I asked the professor if it's hard to teach abortion. She said it's not difficult to teach the procedure.

"The technical procedure is the same, whether you are doing it for a miscarriage, or whether you're doing it to terminate an ongoing pregnancy," she said.

That procedure is known as a dilation and curettage, or D and C. The cervix is dilated, and then a suction instrument is inserted to remove tissue from the uterus.

D and C's are also used to treat excessive bleeding, or to take a biopsy from inside the uterus.

"I like to say that a D and C, a suction D and C even, is bread and butter gynecology," she explained.

OB-GYNs have always learned the D and C procedure. There's nothing controversial about it, per se. But when it's done because a woman chooses to end a pregnancy, it's called an elective abortion, and to be able to perform the procedure in such a case, the doctor needs to have additional training.

Elective abortions are almost always done on an outpatient basis. To do them, doctors learn how to counsel the patients and manage their pain during the five-minute procedure. They also need to learn how to administer medical abortions — the ones that use pills.

In addition, many states like Texas require doctors to perform extra steps, such as reading out loud a state-mandated script to the woman, or having her listen to the fetal heartbeat.

OB-GYN residents can't learn all that's required without spending time at an outpatient clinic, which is where most abortions in Texas take place.

But in Texas, there are only 18 of those clinics still in operation.

Additional Information:

Use the "+" sign above to zoom in and see how residency programs responded to the question, "How are OB-GYN residents trained in abortion?"

  • Green dots indicate the residency is located in an area where clinics still offer elective abortion (12).
  • Yellow dots indicate that a nearby clinic still provides abortion, but the clinic could close soon depending on the U.S. Supreme Court's interpretation of Texas law (2).
  • Red dots indicate that none of the clinics left in the area provide abortion (4).

That worries Lori Freedman, a medical sociologist at the University of California, San Francisco. "How can you have abortion provision if you don't have trained doctors?" Freedman said. "Especially the ones likely to stay in your state."

Abortion training has become more common in the U.S. but only in some areas in the country. "We've trained a lot of people, but they're staying in relatively liberal, urban areas," Freedman said.

Texas has 18 OB-GYN residency programs. All of them undergo periodic reviews by the Accreditation Council for Graduate Medical Education, or ACGME, in Chicago.

One of the things the reviewers look for is whether residents have opportunities to learn about induced abortion, called that to distinguish it from a miscarriage.

All 18 residency programs in Texas are currently accredited, even though some of them are located in cities where outpatient abortion providers have closed.

Programs without abortion providers nearby have other options for fulfilling the training obligation, said Dr. John Potts, ACGME's senior vice president for surgical accreditation.

He explained the residents don't have to perform elective abortions. They can practice terminating pregnancies in the hospital, for other reasons.

"As long as they're getting sufficient experience in some form of abortion, you know, where the mother's life is in danger, where there's significant neonatal abnormalities," Potts said.

In other words, to become an OB-GYN, the resident must know how to safely empty a woman's uterus if her pregnancy is experiencing a medical complication. For situations when it's the woman choice to end pregnancy, residents can hear lectures about it, perform simulations or practice counseling skills on each other.

Some Texas professors maintain that minimal standard of experience is good enough — or, at least, the best they can do under the circumstances.

But I asked Dr. Bernard Rosenfeld, who has been providing abortions in Houston for decades, if he thought it really was enough to learn how to perform elective abortions.

"No, absolutely not," he said.

When residents are learning to do D and C's, they usually do them in the hospital, and the patient is often asleep, Rosenfeld pointed out. But most abortions in this country take place in outpatient clinics.

At the clinics, patients get a local anesthetic or none at all. That makes the abortion safer for the patient, but it requires more skill on the part of the doctor, according to Rosenfeld and other experts.

"Time is a big factor, and causing as least pain as possible, and having a very gentle touch," Rosenfeld said. "But all that is learned."

Residents won't have competence in performing abortions until they do dozens of outpatient abortions, Rosenfeld said.

"Nobody would ever say that about a cesarean delivery or a regular delivery: 'Well, OK, you just saw one or two, so you can just do them,' " he said. "Lots of time you'll have uterine abnormalities and you're not going to know unless you've done many procedures what to do with a uterine abnormality."

There's one more intangible, but critical, experience residents get from abortion training, many doctors say.

Jane summed it up this way: "Every woman has a different story and a different reason why she chooses to end her pregnancy."

Hearing those stories from patients is crucial to an OB-GYN's professional development, said Dr. Jody Steinauer, an OB-GYN professor and researcher at the Bixby Center for Global Reproductive Health at UCSF.

The experience teaches valuable bedside skills like compassion, empathy and political awareness.

"When they spend time in a setting that provides abortion care, they have real epiphanies," Steinauer said. "They become more aware of their biases. They're surprised that more than half of women having abortion are already mothers, for example."

Steinauer's research also shows that OB-GYNs who have access to training during their medical residencies are more likely to provide abortion later in their careers.

But some doctors question the need for more training, saying if residents really want abortion skills they can leave Texas to acquire them, and then come back to the state to practice.

Other OB-GYNs, like Dr. Donna Harrison, executive director of the American Association of Pro-Life Obstetricians & Gynecologists, condemn the entire concept. Harrison believes abortion is killing an unborn child.

"It should not be part of any kind of medical training to do elective, induced abortions," she said.

Residents have always been able to "opt out" of abortion training if they have moral or religious objections, Harrison acknowledged. But some residents might feel pressured to do the rotation, she said, and they could end up indoctrinated with the view that elective abortion is OK.

"If you do a procedure that you have moral qualms with, there's a kind of desensitization that goes on," Harrison said. "The attempt to force residents to participate in abortion is an attempt to desensitize those residents, so they will have less ability to think clearly about what that procedure is actually about."

But Freedman, the medical sociologist, disagreed that abortion training amounts to indoctrination.

"If you look at medicine in general, how many things do we do to teach people empathy, sensitivity, compassion about a lot of things?" she asked.

Doctors will always have patients whose life decisions they privately disagree with, Freedman said, but it doesn't help the patient when doctors judge them or withhold a treatment or procedure.

"Things happen to people that they don't want, healthwise, all the time," she said. "We just need doctors to know how to do this."

According to a national survey, 97 percent of OB-GYNs have had a patient who wanted an abortion. But only 14 percent of those doctors actually provide abortions.

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

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

Sobering Up, And Facing The Reality Of Sex Without 'Liquid Courage'

NPR Health Blog - Tue, 06/21/2016 - 12:35pm
Sobering Up, And Facing The Reality Of Sex Without 'Liquid Courage' Listen· 7:17 7:17
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June 21, 201612:35 PM ET Commentary heard on Fresh Air

Roy Mehta/Getty Images

I stopped drinking at the age of 35, roughly two decades into my sex life. I was scared to quit for a lot of reasons. I thought I'd be boring. I thought other people would be boring. When you drink as long, and lovingly, as I did, you will find a lot of excuses not to hang up your beer mug. But nothing frightened me as much as sex without alcohol. As in, no way. Not happening.

I've always been self-conscious about my body. In high school, I would have worn a scuba suit to pool parties, if I could have gotten away with it. Some mixture of shyness, early puberty and a Hollywood beauty warp kept me in hiding for many years, but alcohol pulled me out into the crowd.

This is the eternal story of alcohol — liquid courage — although it's acquired something of a modern twist for women. In Peggy Orenstein's book Girls & Sex, the veteran journalist describes how young women today rely on booze to stay down with a hookup culture that increasingly takes its cues from porn. I can't speak for anyone else, but if I'm going to be giving a lap dance, someone better bring tequila.

Additional Information: More About Sarah Hepola

Sarah Hepola is the author of Blackout: Remembering the Things I Drank to Forget.

Zan Keith Shots - Health News A Path From 'Blackout' Drunkenness To Sobriety And Self-Acceptance

I applied the same logic to anything around sex. Scared to be seen naked? Drink. Scared he doesn't like you? Drink. Scared you don't like him? Oooh, honey, drink up.

In my 20s, I longed to be one of those marauding females who had one-night stands and didn't demand anything girly in return like commitment or phone calls. But being that vulnerable with another person — a real human person, whose last name I probably did not know — was so confounding to my native sensitivity that alcohol was really the only way I could power through.

And I wanted to like casual sex. I saw it as part of the necessary tool kit for being a Woman of Interest. These days, in pop culture, drinking and promiscuity have become a power brand, embraced by female heroines from Carrie Bradshaw to Amy Schumer.

Drinking and sex make for an appealing rebellion, a pushback to centuries of female repression — and it doesn't hurt that guys like girls who drink and let loose. Of course, when casual sex becomes the norm, it feels a little less rebellious and a little more mandatory.

Drunken hookups are so normalized among single people in their 20s, 30s and beyond that opting out can make you feel like an enemy of sexual freedom. It can make you feel like — yes, that old slur — like a prude.

When I quit drinking, that's exactly what I feared I'd become. One of those dull women who ordered seltzer at the party and would probably never dance on a table again. I stayed in my hidey-hole for more than a year, and I had an imaginary love affair with a barista named Johnny. Sometimes the little things get you through.

I began to inch back into the dating world, more slowly than I wanted but more confident with each passing month, and what I noticed was how much I actually cared about physical intimacy. I'd spent all these years trying to detach myself and pretend none of it was a big deal, but my experience was leading me to the opposite conclusion. Sex was a big deal to me.

Additional Information: Related 'Fresh Air' Interviews Shots - Health News 'Girls & Sex' And The Importance Of Talking To Young Women About Pleasure Television 'Inside Amy Schumer': It's Not Just Sex Stuff Television Louis C.K. On His 'Louie' Hiatus: 'I Wanted The Show To Feel New Again'

Around this time, I was listening to a Fresh Air interview with the comedian Louis C.K., and he said, "If you're intimate with a total stranger, it's a reckless thing to do." He talked about how strange and wrong it felt for him to be that close to someone he didn't know, and I felt validated, in part because Louis C.K. is the great philosopher-comedian of our time, but also because here was a man — a straight dude, the kind whose emotional detachment from sex I'd been trying to imitate to prove I was down — and he was saying casual sex didn't live up to the hype, either.

Over the past couple of years, I've been more open about my feelings on this topic, and I think it makes people more open in return. I've spoken to friends who agree with me, and plenty who don't. They like casual sex. It scratches an itch. It's fun. They might be straight or gay, male or female, but the more I hear people speak honestly about what they want in the bedroom the more insane it seems to me that any one way of being would fit us all. Conformity and sexuality do not mix. It's like demanding that everyone be the same height.

Giving up alcohol didn't end my sex life. You could argue it made it more thrilling. There is something rare and radical about daring to be fully present, and fully revealed, to another person. It scares the hell out of me sometimes, but the fear of vulnerability is part of the price of real connection.

Sex is a journey outside our comfort zones — and the trick is making sure that in that exploration, we feel safe. I don't know how you'll get there. Sometimes I don't know how I will, either. But I can promise the best way to power through isn't alcohol. It's paying attention to your own wants and desires, and being true to them.

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

Even A Small Meal For A Doctor Can Tip The Balance For A Brand-Name Drug

NPR Health Blog - Tue, 06/21/2016 - 10:58am

A single modest meal for a doctor was associated with a higher likelihood he or she would prescribe Crestor, a cholesterol drug, instead of a generic.

Daniel Acker/Bloomberg via Getty Images

Evidence is mounting that doctors who receive as little as one meal from a drug company tend to prescribe more expensive, brand-name medications for common ailments than those who don't.

A study published online Monday by JAMA Internal Medicine found significant evidence that doctors who received meals tied to specific drugs prescribed a higher proportion of those products than their peers. And the more meals they received, the greater share of those drugs they tended to prescribe relative to other medications in the same category.

The researchers did not determine whether there was a cause-and-effect relationship between payments and prescribing, a far more difficult proposition, but their study adds to a growing pile of research documenting a link between the two.

Shots - Health News Drug-Company Payments Mirror Doctors' Brand-Name Prescribing

A ProPublica story published in March found that doctors who took payments from the pharmaceutical and medical device industries prescribed a higher proportion of brand-name medications than those who didn't. It also found that the more money a doctor received, the higher the percentage of brand-name drugs he or she prescribed, on average.

Similarly, a Harvard Medical School study published in May found that Massachusetts physicians prescribed a larger proportion of brand-name statins — the category of drugs that treat high cholesterol — the more industry money they received. There was no significant increase in brand-name prescribing for those who received less than $2,000.

What makes the latest study different is that it looked at specific drugs.

In an editor's note, Dr. Robert Steinbrook wrote that the recent analyses "raise a broader question. Is it necessary to prove a causal relationship between industry payments to physicians and the prescribing of brand-name medications?"

Other than for research and development, and related consulting, Steinbrook wrote, "it is already evident that there are few reasons for physicians to have financial associations with industry. Outright gifts, such as meals, may be legal, but why should physicians either expect or accept them?"

Holly Campbell, a spokeswoman for the Pharmaceutical Research and Manufacturers of America, an industry trade group, said the latest study creates more confusion than clarity. In part, that's because the researchers acknowledge that they couldn't determine whether the drugs were prescribed before or after doctors received meals paid for by companies.

Sift nearly 15 million records in ProPublica's database to see if your doctor has received money from a drug or device company. Search for your physician.

"This study cherry-picks physician prescribing data for a subset of medicines to advance a false narrative," Campbell wrote in an email. "Manufacturers routinely engage with physicians to share drug safety and efficacy information, new indications for approved medicines and potential side effects of medicines. As the study says, the exchange of this critical information could impact physicians' prescribing decisions in an effort to improve patient care."

Since 2013, the government has required all pharmaceutical and medical device makers to publicly report their payments to doctors. The government has released data on transactions from August 2013 to December 2014; data from 2015 are set to be made public next week. (The payments can be searched in ProPublica's Dollars for Docs tool.)

In the study released Monday, a team led by Colette DeJong at the University of California, San Francisco examined four classes of medications, including those that treat high cholesterol, heart rhythm disorders, high blood pressure and depression. The researchers identified one heavily marketed brand-name drug in each class — Crestor, Bystolic, Benicar and Pristiq — for which there are cheaper, equally effective options.

DeJong and her colleagues then looked at physicians who received meals specifically tied to those drugs (companies have to list the products associated with each of their payments) and their 2013 prescriptions in Medicare's drug program. The researchers excluded physicians who received other types of payments — such as for promotional speaking and consulting — in an effort to isolate any relationship to the meals alone.

Though only a relatively small percentage of physicians who prescribed the drugs examined in the study received payments from their makers, those doctors prescribed the drugs more often than other doctors.

Physicians who received meals related to Crestor on four or more days prescribed the cholesterol-fighting drug at almost twice the rate of doctors who received no meals. The difference was even more marked for the other drugs. Physicians who received meals prescribed Bystolic, a blood pressure pill, at more than five times the rate of their uncompensated peers; Benicar, for high blood pressure, at a rate 4.5 times higher; and Pristiq at a rate 3.4 times higher.

Higher rates of prescribing were also observed when doctors received just a single meal, even after taking into account a physician's specialty and region of practice.

Dr. R. Adams Dudley, a professor of medicine and health policy at UCSF and one of the study's authors, said he and his colleagues expected to see "some evidence that doctors were responsive to incentives, what with their being humans and all."

Still, he said, "I think we were probably surprised that it took so little of a signal and such a low-value meal. ... It has changed our thinking."

DeJong said the researchers don't think the meals themselves cause doctors to prescribe more of a drug, but rather the time they spend interacting with drug reps when they drop off those meals.

"There's really no way that a $10 bagel sandwich can influence a doctor in a gift way," she said. "We think it represents more reciprocity, the time spent with the drug rep and the fact that the doctor is listening to this 10-minute pitch."

Dudley suggested that patients talk to their doctors and ask, "Is there a generic that's just as good?"

"Hopefully they can get the doctor off of the prescribing behaviors that we're observing," he said.

ProPublica's deputy data editor, Olga Pierce, contributed to this report. Does your doctor accept payments from pharmaceutical and medical device companies? Find out using Dollars for Docs.

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

Politics Makes Abortion Training In Texas Difficult

NPR Health Blog - Tue, 06/21/2016 - 4:46am
Politics Makes Abortion Training In Texas Difficult Listen· 6:55 6:55
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June 21, 20164:46 AM ET Heard on Morning Edition

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Dr. Bernard Rosenfeld, 74, has not been able to find a successor to lead his abortion practice in Houston. He says younger doctors don't want to deal with the politics and protesters.

Carrie Feibel/Houston Public Media

Every year, more than 100 new obstetrician-gynecologists graduate from a Texas residency program and enter the medical workforce. Theoretically, all have had the opportunity during their four years of residency to learn about what's called "induced abortion" — named that to distinguish it from a miscarriage. But the closure of abortion clinics in Texas — more than 20 since 2013 — has made that training increasingly difficult.

Texas has 18 residency programs in the field of obstetrics and gynecology, but only one allowed me to observe how abortion is taught. Because of the political pressures facing abortion providers, NPR agreed not to reveal the doctors' full names or the clinic's location. The resident agreed to be identified by her middle name, Jane.

Medical residents can opt out of abortion training for religious or moral reasons, but Jane felt a professional obligation to learn the procedure.

"This is part of OB-GYN — it's not an optional part, per se," Jane said. "Women can choose if they want an abortion or not, but you as their doctor need to be able to provide them with all the choices available."

Jane spent that morning performing ultrasounds on pregnant women, working alongside a senior doctor who supervised.

Together, the two women examined a printout from a fetal ultrasound, and the senior doctor offered some feedback.

"On this image here, you want it more of a plane, as if you were opening it like this, so that you have the hypothalamus in your picture," the senior doctor advised Jane. "That's going to give you a better measurement."

Doctors do ultrasounds before abortions in order to date the pregnancy, which helps determine which technique will be used to terminate it. In some states, including Texas, an ultrasound is also mandated by state law.

Jane spent about a month at this family planning clinic during the third year of her residency. Being able to perform the abortion is just one set of skills she learned. She also learned to counsel patients about abortion, contraception and sexually transmitted diseases, and learned techniques for pain management and dilation of the cervix.

The rotation taught her things that will be useful in other practice areas, Jane said. For instance, OB-GYNs use ultrasounds for many different reasons.

"Before in residency, we were doing ultrasounds maybe once during a clinic afternoon, or a few ultrasounds in the OB triage area," Jane said. "But here we do 30 ultrasounds in a morning, so it's a lot of good learning about how to do ultrasounds."

It may be good learning, but in Texas this training happens quietly, almost in secret.

"Doctors working in these institutions are walking a very delicate line," said Carole Joffe, a medical sociologist at the University of California, San Francisco. Joffe studies doctors who do abortions.

"Some of them want very much to be able to train residents," she said. "But they are fearful of the other sectors of the university coming down on them and saying, 'You're threatening our funding.' "

Academic medical centers in Texas receive tens of millions of dollars a year in state funding. Many of those centers sponsor residencies, which are the training programs that come after medical school. They last four or more years and allow doctors to focus on a specialty.

It's understandable why an OB-GYN resident in Texas might think twice about providing abortions. Doctors who provide the service must think about security issues for themselves and their staff. They also have to deal with the scrutiny of state inspectors as well as anti-abortion protesters.

Last summer, hundreds demonstrated outside the Planned Parenthood affiliate in Houston after an anti-abortion group released a series of undercover videos purporting to shed light on problems with fetal tissue research. (Planned Parenthood maintains that the videos are deceptively edited and denies wrongdoing. Meanwhile, two people involved in making the videos have been indicted.)

"Aren't you glad you're from Texas, a pro-life state?" a man shouted into a microphone. "We've got great, pro-life leaders, like Sen. Ted Cruz," he added, as the crowd burst into cheers. Later, they prayed and sang "The Battle Hymn of the Republic."

Surveys and other research show that doctors who do abortions may have fewer job opportunities. That's because many hospitals and group practices refuse to employ doctors who do abortions, even if they do so during evenings or weekends, on their own time.

A few years ago, 48 doctors in Texas did abortions, but a recent study shows it's now down to 28. And some of the remaining doctors are nearing retirement.

Dr. Bernard Rosenfeld, 74, hasn't been able to line up a successor to lead his medical practice. He says he understands — he's been dogged by protesters for years.

"They've picketed my house where I live," he said. "They put bullets in our parking lot."

Rosenfeld has two medical offices but provides abortions at only one, a modest brick building in Houston's museum district. He bought the clinic from other doctors in 1982, but now he can't find anyone to buy it from him.

"I've talked to some doctors, but none of them are interested in the political consequences of providing abortions," he said.

As the number of doctors in Texas dwindles, medical educators have raised the alarm about the need to train the next generation.

To find out how much abortion training was going on, I contacted all 18 OB-GYN residency programs in Texas. Although abortion is legal, and these programs are expected to provide some access to abortion training, my queries were frequently met with fear, evasion or even outright hostility.

One OB-GYN professor in Dallas hung up on me. Another agreed to an interview, then canceled.

Six of the programs, a third of the total, simply refused to answer questions about how the training takes place.

"UT Health does not want to participate in that story," said a spokeswoman for the University of Texas Health Science Center in Houston. "It's not a story that benefits us."

UT Health sponsors two OB-GYN residency programs, both at Houston hospitals.

In the end, I could only confirm that three out of the 18 programs in Texas had made arrangements for residents to spend time learning at an outpatient family planning clinic. Those types of clinics are where most abortions in Texas take place.

It's unclear how some of the residency programs are handling the training requirement. Some directors point to the difficult fact that the nearest abortion clinic is now closed. Other directors may be providing some options for training but wouldn't talk about it publicly.

One doctor who would was Dr. Robert Casanova, who was recently the residency director at Texas Tech University Health Sciences Center in Lubbock. The last clinic that provided abortions in Lubbock closed in 2013.

"As of now, there's really nothing in a close radius to us," Casanova said. "Our patients will go to Albuquerque; they'll go to Dallas; they'll go to Denver."

Casanova was left in a similar bind, with no local clinic where the OB-GYN residents could learn.

To compensate, Casanova created special seminars that cover elective abortion. He even arranged for guest speakers to fly down from Denver.

Since 1996, all OB-GYN programs in the U.S. must offer the residents at least the option to learn abortion techniques, even if the training happens elsewhere. If the residency programs don't do so, it can affect their accreditation.

In Texas, all 18 programs are currently accredited — even in places like Lubbock, where there are no longer any clinics that perform the procedure.

Given the political climate in Texas, and the dwindling number of such clinics, residency directors have had to scramble to find other ways to fulfill the curricular requirement.

Dr. Tony Wen, the residency director at the University of Texas Medical Branch, in Galveston, said it's one of the thorniest logistical problems he has encountered. His OB-GYN residency program is a large one, with slots for 32 residents.

"We cannot teach them the procedure itself," Wen said. "Can we teach them the concept, and describe the procedure and that sort of thing? Yes, we can do all that."

Wen explained he is hampered by three factors:

  • Like most hospitals in Texas, UTMB does not allow elective abortions. Doctors must obtain special approval to do abortions for other reasons, such as severe abnormalities in the fetus, or a threat to the mother's life.
  • Galveston does not have an outpatient abortion clinic. Wen has arranged for his residents to be able to travel for training to a clinic in Houston, an hour's drive away, but almost none have gone.
  • The faculty physicians at UTMB accept reimbursement from the Texas Women's Health Program, a state-funded program for the medical treatment of low-income patients. The doctors cannot be paid if they perform elective abortions or affiliate with an organization that does. The upshot is that Wen and his colleagues cannot teach the procedure, even at an off-site clinic.

Most of his residents don't seem bothered by the situation, Wen said.

"If this part of the training is very important to them, more likely they will probably rank and choose another residency program to go to, instead of come to Texas," he said.

That's not to say the politics haven't affected the curriculum in other ways, explained Wen.

Because getting an abortion has become more difficult in Texas, more patients may be purchasing abortion drugs in Mexico to try to induce a miscarriage, and those pills don't always come with clear instructions.

"Here in Texas, they could easily cross the border and get that medication," Wen says. "A lot of people's thinking process is, 'If five tablets [are] good, 10 must be better!' "

Wen has started teaching the residents how to diagnose a woman who has overdosed on abortion drugs, and what to do to save her life.

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

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

Zika And Children: What Parents Need To Know

NPR Health Blog - Mon, 06/20/2016 - 12:56pm

So far it looks like Zika virus doesn't pose the same neurological risk to small children as it does to fetuses in the womb.

zhang bo/Getty Images

By now we know that Zika is dangerous for pregnant women and their future babies. The virus can cause devastating birth defects.

But what about for infections after babies are born? Or in older children? Is Zika a danger for them?

So far, all the evidence suggests probably not. But there are a few caveats.

Let's start with what we know.

For adults, Zika usually causes only mild symptoms. There's a rash, fever, joint pain or red eyes, which go away within a week. And many people don't get symptoms at all.

So far, this is also what doctors have seen in babies and older kids, says David Vu, a pediatric infectious disease specialist at Stanford Medicine. "There haven't been any reports that suggest Zika causes more severe symptoms in children or infants."

Shots - Health News Who Should Be Worried About Zika And What Should They Do?

But we don't know yet if there are any long-term effects for babies and children who catch Zika after birth, Vu says. "Research on this topic is just beginning."

There's no evidence that Zika attacks children's brains as it does those of fetuses, says James Bale, a pediatric neurologist at the University of Utah.

"Zika virus seems to pose little or no threat to the nervous system of infants or children, when infections occur after birth," Bale says.

The virus can cause infections in the brain, such as encephalitis. "Those seem to be rare in children," Bale says. "But we should be alert for this possibility."

Zika is also known to increase the risk of a rare neurological disorder, called Guillain-Barre syndrome, which can leave people paralyzed for weeks or months — sometimes permanently.

So far, it looks like Zika boosts the chance of getting GBS about fivefold, from about 1 in 67,000 to about 1 in 14,000, Bale says.

But for children and babies, that risk could be lower. "Thus far, the vast majority of patients with Zika virus-associated GBS have been adults," he says.

A few years ago, there was a large Zika outbreak in French Polynesia. Doctors identified 41 people with Zika-related GBS. The average age of the patients was 42. The youngest patient was 26, researchers reported in The Lancet.

In general, the risk of getting GBS increases exponentially with age. People in their 40s have about a threefold higher risk of getting GBS than do children up to age 9, researchers wrote in the journal Neuroepidemology in 2011.

Shots - Health News Here's Really Where Zika Mosquitoes Are Likely In The U.S.

So what does all this mean for children's health this summer?

It depends on where you live, says Stanford's Vu.

So far, all the Zika cases in the U.S. have been imported. Nobody has caught the virus here from mosquitoes because there has been no evidence of Zika-infected mosquitoes. If that does happen this summer, health officials expect only a small cluster of cases in a small area.

Most parts of the U.S. don't have the main mosquito — Aedes aegytpi — that transmits Zika. The chance the virus will appear in these places, such as the Pacific Northwest, Upper Midwest and New England, is extremely low. So parents living in these regions can relax about Zika, Vu says.

If you're not sure whether your community has A. aegypti, check out this new map from the Centers for Disease Control and Prevention. Or call your local mosquito-control district and ask whether A. aegypti has been detected near your home.

In places where A. aegypti is established, such as along the Gulf Coast, parts of Texas and parts of Florida, there's a higher chance Zika could appear in local mosquitoes and spread the virus. So parents should be on the lookout for A. aegypti and protect their kids, Vu says.

"Not just because of Zika," he says. "These mosquitoes can also spread chikungunya, which can be debilitating. The risk of mosquito-borne diseases is real."

Keeping kids' skin covered with long pants and long sleeves is unrealistic in the summer. But you can use repellent, says Dr. Karin Nielsen, a pediatric infectious disease expert at UCLA.

"Look for ones with a compound called picaridin in it," she says. "It lasts for about 10 hours. And it's less toxic than DEET."

If you do go with DEET sprays, find ones with 20 to 30 percent DEET. Lower concentrations wear off more quickly. Higher concentrations can be toxic for children, the CDC says.

And for the tiny tots, pick up a mosquito net to drape over their strollers.

Finally, if you do think your child has Zika, be sure he gets plenty of rest and fluids, the CDC says. Don't give nonsteroidal anti-inflammatory drugs or aspirin. And go see a doctor.

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

Baby Boomers With Hemophilia Didn't Expect To Grow Old

NPR Health Blog - Mon, 06/20/2016 - 4:38am
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June 20, 20164:38 AM ET Heard on Morning Edition

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Randy Curtis has hemophilia. These days he regularly injects the clotting factor treatments he needs from home, as a relatively easy way of preventing the episodes of catastrophic bleeding that plagued him as a child.

Lesley McClurg/KQED

Randy Curtis was in second grade when he and his parents got devastating news from a specialist in blood disorders. Curtis had merely fallen and bumped his knee, but he remembers the doctor's words: " 'You know, these kids don't really live past 13.' "

"So, I went back to school the next day," Curtis remembers, "and told my math teacher, 'I don't have to learn this stuff. I'm going to be dead!' "

He was wrong.

Curtis, now 61 years old, has hemophilia, a rare genetic disorder that makes his liver unable to produce a protein that helps blood clot. Only about 1 in 5,000 boys in the U.S., and significantly fewer girls, are born with the blood disorder. Today, Curtis is part of a cadre of men and women who faced and escaped death more than once because of twists and turns in the treatment of hemophilia — men and women now looking toward a retirement they never expected to see.

Like many kids born in the 1950s with the disorder, Curtis wore protective gear as he was growing up, to prevent injuries. He went to school in a wheelchair. He wore braces on his elbows and knees. He spent recess in the school office because even a hard bump or a fall could spark days of internal bleeding.

"For these children, the bleeding doesn't stop," explains Marion Koerper, a retired hematologist at the University of California, San Francisco. "After six or eight hours the ankle or the knee joint is swollen to the point where it's extremely painful. They can't straighten their leg, they can't walk on their leg and they need to be brought in for treatment."

In the 1950s scientists had discovered that donations of fresh frozen plasma, which contains clotting factors, could be transfused into patients in a hospital. But it took days to transfuse enough of the product to provide relief for a painful joint bleed, and many children died from bleeding inside the skull.

Sporting a shiner wasn't all that unusual for Curtis at age 2. The bleeding disorder he inherited prompted frequent bruising.

Courtesy of the Curtis family

Curtis' childhood was peppered with weeklong trips to the hospital for these transfusions. And he lived in fear of an intracranial bleed that would take his life. In 1960, the life expectancy for people with severe hemophilia was still less than 20 years.

Then, in the late 1960s, scientists discovered how to make freeze-dried concentrates of the clotting factors from blood. That transformed treatment; soon people with hemophilia could store the clotting factor they needed at home and infuse it on a regular basis, instead of waiting for emergency treatment in the hospital.

Curtis has given himself an intravenous injection of clotting factor every few days since he was 14 years old and says the home regimen gave him his life back. No more bleeds. No more hospitals. As long as Curtis injected his medicine his blood would clot normally.

"About my second year in college I realized that with the new products that they had out, I was going to have to get a job!" Curtis says. "It was a shocking revelation. And I had a plan for employment."

He graduated in 1977 with a degree in genetics. He went on to marry, have a son and enroll in an M.B.A. program.

"Then it all came crashing down when we discovered how many were infected with HIV," says Koerper.

She's referring to the medical disaster that occurred in the early 1980s as part of the wider tragedy of the AIDS epidemic. In those years, before HIV was identified, and before sensitive blood screening tests for the virus were developed, some of the clotting factor concentrate was derived from blood inadvertently contaminated with HIV (and, as doctors would later realize, also sometimes contaminated with the hepatitis C virus).

According to the National Hemophilia Foundation, "From the late 1970s to the mid-1980s, about half of all people with hemophilia became infected with HIV after using contaminated blood products. An estimated 90 percent of those with severe hemophilia were infected with HIV. Many developed AIDS and thousands died."

"Those were really dark days," Koerper says. "I looked at my patients and said, 'You're going to die.' " An estimated 10,000 people in the U.S. with hemophilia became infected with HIV.

"A lot of my really good friends are gone," says Curtis. "A lot of their wives are gone, because there was a lot of spread of HIV before we even knew it was HIV."

Curtis was one of the lucky ones; he never contracted HIV.

But a few years ago, he was treated for hepatitis C — an infection that he most likely picked up in the early 1980s, his doctors say.

Doctors put casts on Curtis during summer months when he was a child, to immobilize his ankles and prevent injuries.

Courtesy of the Curtis family

"This was 48 weeks of hell," Curtis says of the treatment. "This was interferon, ribavirin and all this stuff that gave you, basically, the flu everyday for 48 weeks."

The drugs successfully knocked out the hepatitis C virus, but treatment took a toll. Curtis' system is still recovering a year later from all the drugs.

Fortunately, viral contamination of clotting factors is no longer the threat that it used to be for people with hemophilia, because the majority of today's medication is developed in a lab through the use of DNA technology, rather than sourced from human blood.

Pharmaceutical companies manufacture hemophilia treatments at plants like BayerHealthCare's biotech plant in Berkeley, Calif. The company was one of the early players in helping to develop clotting factor as a treatment.

Now researchers are looking beyond treatment, toward the possibility of a cure — using some of the latest advances in genetics.

The company recently partnered with CRISPR Therapeutics — a gene-editing startup. Bayer is investing $300 million in the partnership in hopes of altering the genes involved in hemophilia.

"The hope could be that in about 10 years a gene therapy product could become available," says Hansjoerg Duerr, head of global strategic marketing with Bayer's hematology unit.

Meanwhile, Curtis is enjoying retirement. He is almost giddy when he looks back on his life.

"I've been really lucky," says Curtis. "I mean I'm vertical! Right? I can't complain."

Still, hemophilia treatment is extremely expensive. Curtis' annual treatment costs around $250,000. (The average costs, recent research shows, average around $300,000).

Insurance covers most of his costs, he says; he pays about $1,000 a year for the treatment.

When he hears legislators balking at the high cost of of treatment and suggesting that taxpayer-funded, emergency insurance programs should be cut, Curtis says he has a ready response: " 'It's going to cost you more if we show up in the ER.' "

Still, the high cost of treatment and a lack of access to the drugs leaves most people in developing countries who have hemophilia without good treatment, according to the World Federation of Hemophilia. The majority of patients globally who are born with the condition still don't see puberty.

Curtis plans to spend a lot of his retirement volunteering with the world federation and with the National Hemophilia Foundation as they work to improve international care.

"We're building tools for developing countries," Curtis says, "and showing them how to collect data and do their own advocacy."

This story was produced by KQED's health and technology blog, Future of You.

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

Pediatricians Call For More Testing And Tighter Rules On Lead Exposure

NPR Health Blog - Mon, 06/20/2016 - 12:02am
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June 20, 201612:02 AM ET Heard on Morning Edition

Children can encounter lead in contaminated soil, paint, water and dust.

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When lead was taken out of products like paint and gasoline, levels of the metal in the blood of U.S. children dropped. But the American Academy of Pediatrics says the problem is not over.

"Most existing lead standards fail to protect children," members of the AAP's environmental health council report in a statement published Monday in the journal Pediatrics. Standards for the amount of lead that can be present in paint, water, dust and soil are not based on health standards, the pediatricians say, but instead on what's been feasible to attain. Such standards, they write, create "an illusion of safety."

"We've taken lead out of the paint and out of the gasoline, but the history is still present," says Dr. Jennifer Lowry, a co-author of the academy's report and a medical toxicologist with Children's Mercy, a hospital in Kansas City, Mo.

Older homes with paint and plumbing from earlier time, or homes that stand on what was once an industrial site, can have contaminated dust, water and soil. When children ingest those materials, the metal can get into their bloodstream.

Human bodies have no use for lead, but it can be mistaken for calcium or iron, settling in bones and disrupting important biological processes. And children's bodies absorb more lead than adult bodies do.

"Lead is a neurotoxin," Lowry says. "It gets into the brain and it can cause damage."

It's unethical, of course, to purposefully poison kids with varying amounts of lead and then see what happens with their blood lead level and how that corresponds to developmental problems. So it's hard to say what the effect of exposure to low levels of lead is for an individual child. But on a population level, low-level lead exposure has been shown to affect IQ, attention and behavior. By some estimates, preventing children from coming into contact with lead would prevent the loss of more than 20 million IQ points.

According to the Centers for Disease Control and Prevention, if a child's blood has more than 5 micrograms of lead per deciliter of blood, it's a red flag for health care providers. It means that child is in the 2.5 percent of children in the country with the highest levels of lead in the blood.

"But at that point, when we find out that they have an elevated lead level, the harm has already been done," Lowry says. "We cannot have our children be canaries in the coal mine, where they get exposed first and then we have to try to fix it. If we want to actually do the right thing, we should prevent it from happening in the first place."

The academy recommends that pediatricians and primary care providers proactively test children for high blood lead levels, especially if they are between 1 and 2 years old and live in areas with homes built before 1960. It's also calling for updated national limits for lead in house dust, water and soil, and for federal funding for initiatives like removing lead paint and dust from public housing and replacing the lead service lines that bring water into many homes.

"We should know where the old houses are that were built before 1960, where the soil is next to the highways, where we have these lead problems and actually fix it before we send our kids out to live in those environments," says Lowry.

An estimated 37 million homes in the United States still contain lead-based paint. An additional 6 million homes receive their drinking water through lead pipes.

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

Around The World, When It Comes To Health Advice Mom Knows Best

NPR Health Blog - Sun, 06/19/2016 - 7:00am
Rose Jaffe for NPR

We had kids later in life, knowing little about children and with no parents to guide us. I depended upon Sofiya, our stern Russian day care provider, for child-rearing advice. She reminded me of my Lithuanian grandmother who took care of me as a child.

When the children caught colds, my husband took their temperature and carefully measured out a draught of flavored Tylenol. Then the children would demand Sofiya's special treatment — Vicks VapoRub on the soles of their feet.

Additional Information: The New Norm

Social norms determine much of our behavior — how we dress, talk, eat and even what we feel. Alix Spiegel and new co-host Hanna Rosin examine experiments that attempt to shift these norms in the first episode of the NPR podcast Invisibilia.

My mother had smeared Vicks VapoRub on our chests. Mentholating tiny feet when the cold was affecting very different body parts seemed bizarre, but we were cowed by Sofiya and followed her diktats. And whatever her methods, our kids thrived under her care. (They also behaved impeccably at her house, unlike at home.)

Having someone you trust to ask about health is pretty important. When people have serious health issues, 70 percent of U.S. adults got information or care from a doctor or other health care professional, according to a recent Pew Research Center survey. But 60 percent said they got information or support from friends and family.

Health and culture are deeply intertwined, and the accepted norms for managing sickness and health vary widely among cultures, even in this globalized era.

Curious if others have had their Vicks VapoRub moments, I polled friends in foreign lands as well as moms from other countries at my kids' Southern California elementary school. They all use Western allopathic medicine, but often combine this with the health mores of their culture of origin.

Rose Jaffe for NPR

Claire, mother of one of my daughter's friends, said that back in France, people live a more relaxed coexistence with germs than the American scorched-earth policy. "Wash your hands before you do anything, but wipes are not used." Claire said. And French moms appreciate the occasional indulgence; "A glass of champagne during pregnancy is fine now and then."

When you eat your dinner matters in Greece. "If you eat a heavy meal late at night, you are likely to have a nightmare," said Artemis, reporting from Athens. "Despite warnings, Greeks do eat full meals late, but the old wisdom is that the heaviest meal should be at lunch, unless you go out to dinner. The idea being you eat a yogurt and fruit for dinner. Everyone knows this, but few keep it."

Rose Jaffe for NPR

And in Southern India, your whole family may set the clock for your wedding night. According to Rekha, another third-grade mom, elders traditionally determine the most auspicious time for consummation after consulting with the family priest. This "first night" unites the newly wedded couple in a sacred act of procreation. In the old days, Rehka says, a fire sacrifice was performed followed by chanted mantras, increasing the odds of creating a righteous child with high intellect.

And when it comes to caring for children, many mothers said they rely on traditional methods. For example, the idea managing heat or cold runs across cultures.

When children have fever, Iranian moms wash their feet with lukewarm water, said Emites, who I met at the party for the afterschool Farsi class. "That's what my great-grandparents used to do, and it passed to us generation by generation." she said.

My Chinese correspondents choose between Chinese herbal or Western medicine. Claudia said if a child has fever, the adults have the child drink warm water and wear some thick clothes, with the goal of making the child sweat to release the heat in the body. For a cough, minty oil is applied to the chest to relieve congestion. Applying pressure to specific points on the body can stop the nausea of motion sickness. Another Chinese friend, Samantha, said that when her mom put sugar water on her daughter's bee stings, she stopped complaining almost immediately.

Rose Jaffe for NPR

For perspective I turned to Leila Monaghan, an anthropologist at Southern Illinois University and Northern Arizona University. "When you are looking at particular beliefs, they are small parts of a larger picture." Monaghan said. " You can't take them separately. Medicine is always part of a larger belief system, so the French glass of champagne is part of the cultural belief that eating and drinking is part of a healthy lifestyle."

Advice from generations of mothers taking care of children is tested by time, Monaghan said. Vicks VapoRub is like peppermint oil, helping feverish little bodies feel cooler. If you can't go to the doctor, you use what you have.

"You turn to these words of women you know and trust in these matters." Monaghan said. "In some ways it goes back to the whole human need for ritual."

Will our kids smear Vicks VapoRub on their children's feet when they grow up, just because we were intimidated by their day care provider?

I wish for a long life, just to find out.

Wendy Wolfson is a science writer in Orange County, Calif.

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

Vermont Insurers Must Now Cover Vasectomies

NPR Health Blog - Sat, 06/18/2016 - 8:19am
Vermont Insurers Must Now Cover Vasectomies Listen· 3:57 3:57
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Though the federal Affordable Care Act requires health insurers to cover many types of contraception, a vasectomy is not one of them.

Charles Thatcher/Getty Images

Vermont has become one of several states working to make sure vasectomies are among the birth control options couples can afford.

Gov. Peter Shumlin last month signed into law a bill that adds vasectomies to the list of procedures that most health insurance coverage in Vermont must pay for.

At the Gifford Medical Center in Randolph, Vt., nurse Ann Bridges recently pulled together "post-operation goody bags" for what the clinic calls "Vasectomy Friday" — the most popular day of the week to get the permanent birth control operation.

"Instructions, ice pack, condoms, Bacitracin, sample cups," she said, listing items headed to each bag. "One for each vasectomy."

Sterilization is the most common form of birth control relied on by women of reproductive age in the U.S., according to statistics gathered by the Centers for Disease Control and Prevention. Roughly 25 percent choose female sterilization, and roughly 5 percent rely on a male partner's vasectomy.

"For women to be sterilized — it's quite the procedure," Bridges says. "It's in-patient. You're in the O.R., you have anesthesia onboard, you're six weeks [recovering] — it's actually a big deal."

In contrast, she says, men who get a vasectomy "walk in and walk out. It's easier." Gifford Medical Center charges around $1,400 for the procedure, which is performed in what looks more like a gynecologist's office than an operating theater.

The federal Affordable Care Act only addresses issues of health insurance and birth control as they relate to women.

Rep. Christopher Pearson, of Montpelier, who helped oversee the passage of the Vermont legislation, says he's proud to broaden that discussion to include men.

The Vermont legislation was personal for Pearson. His decision to get a vasectomy was a choice he and his wife made together, he says — "in many cases, families make this decision together, and that's appropriate."

Including the procedure in health care coverage seems obvious to him.

"It was just sort of a no-brainer," he says, "that when we're talking about different birth control options, we ought to include vasectomies."

He says federal legislation has addressed the need to cover birth control - for women.

"And what we're saying here in Vermont, and I'm proud of this, is saying, 'No, this is a family decision in many, many cases and we should not pretend that this burden only fall to women at all.' "

Pearson thinks people living in Vermont, a generally liberal state, often forget that access to birth control is limited in many places.

"But we are also part of a national dialogue," he says, "and it's important for us to push in the right direction while we watch so many states try to undo these basic rights."

Still, where there is birth control, there is controversy. In Vermont's legislative debate, the Roman Catholic Diocese of Burlington argued before the House Health Care Committee for a religious exemption from having to include birth control coverage for its employees.

"How can you compel a religious organization to do something which it views as cooperation with evil?" asks Pete Gummere, a deacon with the diocese, who has long studied the intersection of morality and modern medicine.

The diocese will likely not be alone in objecting to the law, Gummere says, adding that many locally owned businesses in Vermont are run by families who have religious objections to providing birth control.

On the federal level, Gummere is right; the U.S. Supreme Court has ruled that certain rights of corporations with religious affiliations do trump federal mandates about contraceptives. But what has not been decided yet is how that will play out for states.

Vermont joins Maryland in adding some birth control benefits for women and men to health coverage. Similiar bills are under consideration in Alaska, Minnesota and a handful of other states.

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

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

Is It OK For Boys To Cry?

NPR Health Blog - Sat, 06/18/2016 - 7:00am
Keith Negley for NPR

A few weeks ago at a soccer game I was coaching, my team got trounced. They are 7 and they are not used to losing. As soon as I called the game and they realized what had just happened, two of the boys burst out crying.

The first one cried loudly, and desperately. He was upset because he hadn't run hard enough or passed enough or scored enough goals. It was the cry of a battle commander who had let his troops down, and his father hugged him proudly. The second boy cried because of a minor injury and a general sense of exhaustion. His mom gave him a stern face and whisked him away to the car.

Do we care if our sons cry? When I asked that question on Twitter, a handful of moms immediately wrote me back to say: Of course! I want my son to cry! But I suspect that only applies to the kind of parents who follow me on Twitter, and even less so for the dads. The most fulsome and possibly honest answer I received (from a dad) was: "I don't mind at all when my 11-year-old cries when he is overcome with emotion. I do mind when he cries over small injuries."

My conclusion: I think we care a lot less about boys crying than we used to, but more than we will admit. Or to put it another way: boys can cry, if they do it in just the right way.

The academic research about boys and crying – or more accurately, vulnerability – shows that society is right now in a precarious place. One body of research shows that boys will fall further behind in school and in an increasingly complex society if we do not teach them how to be emotionally open and honest, able to recognize and navigate their feelings rather than stuffing them down. But another body of research shows that teaching boys to accept their own vulnerability is harder than we think. Despite our best intentions, our progressive instincts, and an increasingly gender-fluid society — the mama's boy stigma dies hard.

Additional Information: The New Norm

Social norms determine much of your behavior - how we dress, talk, eat and even what we feel. Alix Spiegel and new co-host Hanna Rosin examine experiments that attempt to shift these norms in the first episode of the NPR podcast Invisibilia.

In fact, we have been stuck in this spot for a while. Nearly 20 years ago The Atlantic ran a cover story about the boy crisis in schools. Boys were falling behind in math and reading scores, in high school and college graduation rates. For working-class men this translated into a very slim chance of an easy middle-class life, as I wrote about in my 2012 book The End of Men. Initially researchers thought that what boys needed was more ... boyishness, more rough and tumble play, more adventure stories!

But now it looks like they might need the opposite. In a 2013 report, sociologists Thomas Di Prete and Claudia Buchmann wrote that "boys' underperformance in school has more to do with society's norms about masculinity than with anatomy, hormones or brain structure." Boys who do extracurriculars like music, art and drama tend to get higher grades, they found, but those things are often denigrated as "un-masculine," they write. And they found many examples of boys who strive for good grades being called "pussies" or "fags" by their peers.

Why at a time when acceptable behavior for women has expanded, do men remain stuck? After all, studies of infants and young children show that babies and very young boys are just as emotive as little girls. So why do we socialize it out of them? Sociologist Stephanie Coontz calls this the age of the masculine mystique. In the 50s and early 60s it was women who were stuck in a box. But now it's men who are trapped in a narrow gender stereotype that "prevents them from exploring the full range of their individual capabilities," she writes.

I own a 1958 book called The Decline of the American Male. It shows a picture of a wickedly indifferent goddess woman pulling the puppet strings of a boy. Chapter One is called "Why Do Women Dominate Him?" The fear of female domination runs deep. You can see it in Gamergate, in Donald Trump, in bro culture on campus. In fact, it's a strain of misogyny that runs alongside gender equality. Ask the question: "Can Boys Cry?" and you are only likely to inflame it, confirm the fear that boys are being forced to conform to a girls' world.

My guess is that there has always been an acceptable category of male vulnerability and that it always looked different from the female kind. You can see it in boys' eternal attraction to superheroes, who are simultaneously invincible and tender. You can see it in boy-men's undying love for Bruce Springsteen. Boys seem magnetized to men who express the full range of emotions. But we have lost that along the way, or at least it's gotten perverted. In her 1999 book Stiffed: The Betrayal of the American Man, Susan Faludi says that these days boys are modeling themselves on what she calls "ornamental masculinity" – the flattened, crude version of macho that dominates TV and music and porn.

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To me the most promising efforts are the ones that address male vulnerability on its own terms, or at least in gender-neutral terms. As it happens, some of the most exciting trends in education right now are ones boys can get behind. New research on motivation encourages kids to fail. The newly trendy concept of grit implies a life of endless obstacle courses and toughness, something boys can also own. And my favorite, psychiatrist Jonathan Shay's program to ease combat trauma with Greek classics. Shay sees that the classics understood something we have forgotten — that men who are coming back from war, or who have just lost a soccer game, or who are just plain tired, would naturally want to cry. But he also sees that the message is easier to take coming from a Greek hero.

Hanna Rosin is a co-host of the NPR podcast Invisibilia. She's written for The Atlantic and Slate, and is the author of The End of Men.

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

Tourette's Tics Are A Challenge, But Misunderstanding Of Tics Can Be Worse

NPR Health Blog - Fri, 06/17/2016 - 10:44am

Jess Thom (left) and Jess Mabel Jones from Thom's show, Backstage in Biscuit Land. Thom's website says she's "changing the world, one tic at a time."

James Lyndsay/Courtesy of Supporting Wall

Jess Thom says the word "biscuit" about 16,000 times every day. Her brother-in-law counted once.

That's just one of the tics that Thom, a London-based performance artist, has to manage as part of her life with Tourette's syndrome, a neurological disorder characterized by involuntary vocal or motor tics. Specialists say the condition affects as many as 300,000 children in the United States, though many are undiagnosed.

Thom has had tics since childhood, but she wasn't diagnosed until her 20s.

"What disables me ... is other people's misunderstanding," she says. "What's exciting is that it's something we all have power to change."

The condition is far more common than many people realize, and many misperceptions about it still exist, says Kevin McNaught, executive vice president of the advocacy group Tourette Association of America.

"It's not a rare disorder," McNaught says, citing an estimated 1 in 100 school-age children with the condition, including many who aren't diagnosed until adulthood, if at all.

Michael Chichioco, a California high school senior who has Tourette's syndrome, says he used to be bullied at school, with kids trying to trigger him to have outbursts. His tics come out more prominently when he is nervous or excited.

"People got a kick out of trying to get me to say the bad words," said Chichioco, now a youth ambassador for the national association. "They would try to get me to say them in bad situations. The big challenge is to remember they don't quite understand the syndrome."

Chichioco says self-assurance has been one of his best coping skills.

"It's easy to get down when people don't seem to understand it," he says. Part of his work as youth ambassador is spreading awareness of the condition and countering the many misunderstandings.

For example, though Chichioco has a vocal tic that leads to involuntary outbursts of curse words, that particular manifestation of Tourette's syndrome — coprolalia — is rare. Only about 10 to 15 percent of people with the syndrome have it, says McNaught.

A neurological disorder, not psychiatric

The symptoms of Tourette's appear in early childhood but can be transient and reappear later in life, McNaught says. Because symptoms come and go and vary in severity, they often lead to a delayed or incorrect diagnosis until the children are much older.

Tourette's syndrome is often misunderstood to be a psychiatric disorder, because it can have some behavioral features and symptoms that worsen at times of stress or anxiety.

Chichioco says he first had tics — "a throat-clearing sound" — at around age 6, but his family and doctors discounted that as perhaps linked to allergies. He wasn't diagnosed with Tourette's until age 13, after he'd developed more elaborate motor tics that involved his face, head and neck.

Chris Mason, author of the e-books "What Makes Me Tic: Living with Tourette Syndrome" and "Touretties," says he wasn't diagnosed until age 20, after his mother became ill. The stress of facing her health issues brought out his tics more prominently, Mason says. His first tics, also motor tics, involved blinking his eyes really fast and tightly.

In his childhood, before his diagnosis, Mason's parents used to refer to his tics as his "bad habits."

"A lot of parents have never heard of the word Tourette's," Mason says, "even though there's a hereditary component."

Though some features of the syndrome seem to cluster in families, the pattern of inheritance isn't yet clear. "A variety of genetic and environmental factors likely play a role in causing Tourette syndrome," explains the National Institutes of Health website, with most of these factors still unknown.

Treatment options

The condition is treated with a combination of medication and behavioral therapy. But the medications can carry serious side effects like cognitive dulling or extreme fatigue, so people with Tourette's often come up with other techniques of coping, as well.

Mason says his medications make him extremely drowsy; he could sleep 18 hours a day if given the chance.

"Anytime I sit down or lay down, I go to sleep," he says. "Being an author, it's taken away my creativity. It's hard to write."

Thom says she couldn't tolerate those side effects of medication so developed some other techniques for dealing with her tics. She helps spread the word about her condition — and her coping strategies — on a website called Tourette's Hero. She wears padded gloves because she punches her chest hundreds of times a day. And she's begun using a wheelchair because her walking is "chaotic."

When she started using the wheelchair, Thom says, she noticed a difference in how people treated her: "People are less frightened of me now."

Thom doesn't know why the word "biscuit" has such a prominent role in her life. She doesn't think about biscuits nearly as much as it seems, she says, and laughs. Her experiences inspired the title of a live show based on her experiences — Backstage in Biscuit Land.

She says she decided to perform onstage in a theatrical production because it was the only seat in the theater from which she couldn't be asked to leave. Having motor and verbal tics makes it highly challenging for someone to attend theater, a space in which people are expected to sit still and quietly, Thom says.

Being in a romantic relationship is another challenge for some people with Tourette's.

Mason compares the situation to disclosing sensitive information in a job interview. "You have to decide if you are going tell someone before you get the job, or right when you get in the relationship," he says. "When I put it out there, it ends shortly after."

Chichioco said he hasn't yet been in a romantic relationship.

"The fear of finding someone you really like, and having them say, 'You have Tourette's, I can't handle it' — it's hard to show vulnerability in that context," Chichioco says. "It's eventually something I'll have to face."

Dating someone else with Tourette's syndrome would bring its own challenges, he says.

"When I'm with other people with Tourette, we mirror our tics," Chichioco says. "That could be a hindrance. At the same time, it would be great to have two people that understand each other."

Seeing the "flip side" of his challenges — the benefits of having his condition — and talking about those, has been the best medicine for him, Chichioco says. He gave a TEDx youth talk last year about "finding the flip side."

"I found throughout high school, I was uptight about it," he says, of Tourette's syndrome, but that changed when he started speaking openly about his experience to friends.

"I felt empowered by the backing of people," the teen says. "The best treatment is being honest and speaking about it."

Michael Chichioco, Jess Thom and others with Tourette's syndrome recently discussed what it's like living with the condition on KQED's Forum program. This post, produced by KQED's State of Health blog, is based on that discussion.

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

Federal Program That Helps Patients Navigate Medicare May Be Cut

NPR Health Blog - Fri, 06/17/2016 - 9:32am

A program that has helped seniors understand the many intricacies of Medicare, as well as save them millions of dollars, would be eliminated by a budget bill overwhelmingly approved last week by the powerful Senate Appropriations Committee.

The State Health Insurance Assistance Program, or SHIP, is among more than a dozen programs left out of the bill by the committee. Cutting these "unnecessary federal programs" helped provide needed funding for other efforts, Sen. Roy Blunt, a Republican from Missouri, said in a statement issued last week. Blunt is chairman of the Appropriations Committee's health and labor subcommittee.

Ending SHIP saves $52 million — which will help pay for a $2 billion increase for the National Institutes of Health, restore year-round Pell Grants for college students, and increase resources to prevent and treat opioid abuse, among other things.

"Seniors should absolutely have access to high-quality, personal customer service as they seek Medicare benefits," said an aide to Sen. Patty Murray of Washington, who is the senior Democrat on the labor and health subcommittee. "Sen. Murray is disappointed that within the tight budget constraints, we were unable to do more to ensure that is the case." The aide said Murray is hopeful she can restore funding.

SHIP counselors are in every state, the District of Columbia and the U.S. territories. These counselors offer Medicare beneficiaries free advice on how to choose from an array of drug and health insurance plans and how to challenge coverage denials. They advise Medicare patients how to get financial subsidies for premiums, co-payments and deductibles. They provide one-on-one counseling, as well as host enrollment clinics, informational meetings, special "Welcome to Medicare" events for new beneficiaries, and answer questions over toll-free telephone help lines.

"Medicare is very complicated," said Howard Bedlin, vice president for public policy and advocacy at the National Council on Aging, a nonprofit service organization. "Last year SHIPs helped 7 million people navigate this program and without those services, people will not be able to make well-informed choices. That's going to cost them money."

On Thursday, the council, along with the Center for Medicare Advocacy, Medicare Rights Center and National Committee to Preserve Social Security and Medicare, called on Senate leaders to restore SHIP.

The full Senate is expected to vote on the budget bill in the fall, and then it would have to be reconciled with a version from the House, which has not yet drafted its bill.

In April, more than 43 groups urged congressional leaders to increase SHIP funding to keep pace with inflation and the growing Medicare population, which adds 10,000 baby boomers each day.

Ohio's SHIP program saved seniors $20.8 million in 2015 and was ranked first in the nation by the Department of Health and Human Services, according to the state's lieutenant governor. It received $1.84 million in federal funding for the 12-month period ending March 31.

California's SHIP program, known as the Health Insurance Counseling and Advocacy Program (HICAP), has also helped beneficiaries save money. In Orange County alone, 1,247 beneficiaries saved an estimated $1.17 million last year when SHIP counselors showed them, among other things, how to switch to drug plans that covered their medications, said Linda Walton, the county's HICAP program manager.

"We have this huge influx of people turning 65 and they are cutting the program that helps this population find benefits they need?" said Bonnie Burns, a training and policy specialist who trains HICAP counselors. "That makes absolutely no sense."

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation.

Copyright 2016 Kaiser Health News. To see more, visit Kaiser Health News.
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