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Stats Split On Progress Against Cancer

Mon, 03/23/2015 - 3:53pm
Stats Split On Progress Against Cancer March 23, 2015 3:53 PM ET

When someone asks whether we're winning the war on cancer, the discussion often veers into the world of numbers. And, depending on which numbers you're looking at, the answer can either be yes or no.

Let's start with the no.

The number of cancer deaths in this country is on the rise. It climbed 4 percent between 2000 and 2011, the latest year in official statistics. More than 577,000 people died of cancer in 2011. That's almost a quarter of all deaths. Those aren't just personal tragedies – the figure represents a growing burden on America.

"It's hard to think of winning a war when more and more people are going into the battlefield every day," says Clifton Leaf, author of The Truth in Small Doses: Why We're Losing the War on Cancer — and How to Win It.

Find other stories in the Living Cancer series at WNYC.org.

WNYC

For most of the common types of cancer, there has only been incremental progress in improving treatments – especially in advanced cancers, where lives may only be prolonged for a few years.

"If you look at the late-stage disease for those intractable cancers, the deadly dozen or so, we really haven't made staggering progress," Leaf says. He's not dismissing the importance of those small improvements, but "the question is whether we're using the right strategy to be where we want to be a decade from now," he says. "Those targeted medicines are just nipping at the corners,"

As a result of the ever-growing numbers, there's a need for more doctors to treat the disease, more hospital beds in oncology wards, and more money to pay the ever growing bills for cancer treatment.

National Cancer Institute scientists project that the cost of treating cancer will reach $173 billion in 2020, which is a 39 percent increase over those costs in 2010. That assumes a modest 2 percent inflation rate for the cost of cancer treatment.

It doesn't take into account the soaring costs of cancer drugs. A commentary in the journal Cancer finds that the price of new chemotherapy drugs has jumped from under $10,000 a year in 2000 to more than $100,000 a year in 2012. And more expensive new drugs are in the pipeline, portending higher prices.

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But there's another, more encouraging way to look at the war on cancer. This is how the yes-we're-winning camp does it. While the number of cancer deaths grew by 4 percent between 2000 and 2011, the total U.S. population grew by 10 percent. That means the proportion of Americans dying from cancer is actually declining. What's more, cancer is mostly a disease of older people, and they are making up an increasing share of the population. So if there were no progress in stopping cancer, the number of cancer deaths would be climbing much faster than it is.

Statisticians have a way to account for those dramatic changes to the population. Instead of simply counting the number of people who die of cancer, they look at the number of deaths as a fraction of the population. That provides a rate rather than a simple number. They correct for the aging of the population with a process called age adjustment or age standardization. (Robert Anderson and a colleague at the National Center for Health Statistics explain this in detail in an old but still pertinent article.)

Using that widely accepted technique, the death rate from cancer actually declined 15 percent between 2000 and 2011. Yes, the total number of deaths is up, but the rate, measuring annual deaths as a proportion of the population, is falling. Organizations like the American Cancer Society point to those rates to argue that we're making progress in the war on cancer.

It's worth looking at the details behind this decline. Cancer is not one disease, but more than 100, and each one has its own story. About half of all cancer deaths are from just four different types: lung, colon, breast and prostate.

Each has a different story:

  • Lung cancer rates are declining largely because millions of Americans have quit smoking.
  • Breast cancer incidence rates dropped sharply in 2002, after doctors stopped routinely prescribing hormones to postmenopausal women, and they have leveled off since. Early detection and treatment improvements are driving the recent decrease in breast cancer mortality.
  • Colon cancer death rates are also declining, in part because colonoscopy screening is finding polyps before they turn cancerous. Treatment has improved, too.
  • Prostate cancer death rates are declining largely because of improvements in treatment.

When Dr. William Nelson first started treating men with prostate cancer early in his career, he says treatment would help a bit, but "usually within a year or two, the disease would roar back and threaten their life, and usually they didn't live very long."

"Today it's completely different," he says. "If you look at men with advanced prostate cancer, they often live a decade or more." And though surgery and radiation treatments can have unpleasant side effects, the men aren't suffering in pain as used to be the case.

He says it's a "night-and-day difference" from when he started treating this disease, says Nelson, director of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins.

Together, mortality numbers and mortality rates are the most robust ways to measure progress on the cancer front, but scientists also sometimes present five-year survival rates.

The Centers for Disease Control and Prevention has recently added that measure to its cancer statistics. Overall, CDC concludes that 2 out of 3 people who are diagnosed with invasive cancer are alive five years later. This varies widely based on the type of cancer.

One shortcoming is that cancer is sometimes overdiagnosed, yet these rates include people who survived cancers (such as some cases of prostate cancer) that grow so slowly they were unlikely to be fatal anyway. The approach also fails to account for people who die of cancer more than five years after diagnosis, so it's not the strongest measure of progress against cancer.

That said, the five-year survival rate has been gradually improving. That means the number of people alive with cancer continues to grow. The American Cancer Society estimates that there are more than 14 million people living with cancer in the U.S. right now. That, in turn, affects the cost of caring for cancer throughout the country.

Those costs not only affect the patients and their families; it also falls on taxpayers and people who buy health insurance. They are indirectly paying for a lot of that care.

Our series is produced with member station WNYC, and with Ken Burns Presents: Cancer: The Emperor of All Maladies, which will air on PBS starting March 30. Check your local listings for broadcast times.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

If You're Going To Die Soon, Do You Really Need Statins?

Mon, 03/23/2015 - 1:17pm
If You're Going To Die Soon, Do You Really Need Statins? March 23, 2015 1:17 PM ET iStockphoto

It's easy to get put on statins, and it can be surprisingly hard to get off them. That's true even for people who are terminally ill and might have bigger concerns than reducing their cardiovascular risk.

People approaching the end of life who did stop statins were not more likely to have a heart attack or stroke than those who kept taking the drugs, according to researchers who tested the idea.

Most of the researchers take care of people with serious illnesses and were struggling with the question of if or when their patients should stop taking medications to prevent disease.

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"What does it mean to a patient when you say it's OK to stop taking a medication?" asks Dr. Jean Kutner, a professor of medicine at the University of Colorado's Anschutz School of Medicine and lead author of the study.

She and her colleagues realized they didn't know whether it's safe for people with a terminal illness to stop statins. And they didn't know how patients would feel about that. When people start statins, Kutner says, they're often told they'll be on them for the rest of their lives. "And then I come back around and say you don't need this anymore."

To answer the safety question, Kutner and colleagues recruited 381 people who were being treated at 15 medical organizations that are part of a palliative care research cooperative. Almost half of the people had cancer; 58 percent had cardiovascular disease; and one-third of participants were enrolled in hospice.

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Going off statins didn't cause a significant increase in heart attack risks or hasten death, the study found. People lived about seven months from the start of the study. And though there weren't significant differences in quality of life, people did say they felt better and were happier to be taking fewer medications.

And getting off statins saved $716 per patients. The results were published Monday in JAMA Internal Medicine.

This gives doctors the option of asking patients if they'd like to stop the statins, Kutner says. She'd frame it like this: "For people in your situation it appears safe to stop the medication; you may actually feel a little bit better without it."

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Some people may feel that preventing a possible stroke is so important they prefer remaining on it, she says, "and another may say, 'Thank goodness I actually get to stop a med.' "

And just as patients may have wildly varied responses to the idea of stopping a preventive medication, doctors do, too, Kutner says. "We got the whole spectrum from 'No way, this patient needs to stay on statins' to 'Wow, what a good idea, we should be doing this more often.' "

And "doing it more often" could also apply to people who aren't in the final months of their lives.

About 30 percent of people over 65 are regularly prescribed five or more drugs, and many of those may be unnecessary or dangerous, an article accompanying the study finds. But deciding when to "deprescribe" can be dicey.

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Older people are particularly vulnerable to high-risk drugs like opioids, benzodiazepines, anticoagulants and NSAIDS, this article notes, and people who are near the end of life won't gain much from statins or drugs to prevent osteoporosis.

Drugs with the greatest harm and least benefit should be discontinued first, the authors conclude, while also considering how hard it is to get off them. Benzodiazepines are dangerous for older people, for instance, but they are also hard to quit because of withdrawal symptoms.

And the patient should get a voice, too. "I think our data should be taken into consideration in a shared decision-making process, rather than a 'You shall do this,' " Kutner says.

If her study had shown that a new drug improved quality of life without significant increases in mortality and with modest cost savings, it would be heralded as a breakthrough, she notes. "Most of the studies focus on when to start a medication; there's been very little focus on when do you stop it."

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

Rethinking Alcohol: Can Heavy Drinkers Learn To Cut Back?

Mon, 03/23/2015 - 3:33am
Rethinking Alcohol: Can Heavy Drinkers Learn To Cut Back? March 23, 2015 3:33 AM ET Listen to the Story 6 min 45 sec   Maria Fabrizio for NPR

The thinking about alcohol dependence used to be black and white. There was a belief that there were two kinds of drinkers: alcoholics and everyone else.

"But that dichotomy — yes or no, you have it or you don't — is inadequate," says Dr. John Mariani, who researches substance abuse at Columbia University. He says that the thinking has evolved, and that the field of psychiatry recognizes there's a spectrum.

Problems with alcohol run the gamut from mild to severe. And there are as many kinds of drinkers along the continuum as there are personality types.

People with severe problems, such as those who keep on drinking even after they lose jobs or get DUIs, need treatment to stop drinking completely.

But there are other drinkers, including some who are in the habit of drinking more than one or two drinks a day, who may be able to cut back or moderate their consumption and reduce their risk.

In fact, a recent study by the Centers for Disease Control and Prevention found that the majority of Americans who drink more than one or two drinks a day are not alcoholics. They don't report symptoms of dependence.

The Salt Moderate Drinker Or Alcoholic? Many Americans Fall In Between

So what would it take for them to cut back? Increasingly there are researchers and therapists evaluating this question. And they're finding a host of strategies that may be helpful.

Another CDC study found that alcohol screening and counseling in doctors' offices — for instance, your primary care doctor asking about drinking during an annual checkup — can reduce drinking by 25 percent per occasion in people who drink too much.

And the National Institute on Alcohol Abuse and Alcoholism has a whole list of tips aimed at cutting down — everything from drinking tracker cards that you can keep in your wallet to help you track your drinking when you go out, to strategies for handling urges.

"I had these good intentions, but then every time Friday rolled around, I'd lose my resolve."

For people concerned that their drinking may be moving towards dependence, a screening tool called the Drinker's Checkup can evaluate and give feedback.

There are also support groups such as Moderation Management, which aims to help drinkers who are trying to cut back.

Ten years ago, Donna Dierker, who lives in St. Louis, was concerned about her drinking. "When I did drink, I drank a lot," Dierker told us. She never drank during the workweek, but on weekends were different. "Fridays would be a six-pack," she says. And Saturdays meant more drinking. "On Sundays I'd feel awful."

Her blood pressure was going up; her weight was creeping up. And so she resolved to cut back.

"I had these good intentions, but then every time Friday rolled around, I'd lose my resolve," Dierker says.

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She checked out Alcoholics Anonymous because that was the only alcohol support group she'd ever heard of. But she says it didn't seem like the right fit.

Then she read about Moderation Management. "And I just decided to try it."

When she connected with leaders and other people on the MM listserv, they helped her work through her issues.

The first task was to identify her triggers. Why was she was drinking so much?

She realized that she used alcohol as a reward for a hard week's work. "Getting through a Friday evening without my reward, you know, that was the tough one," Dierker says.

But she also realized that her drinking was more of a habit than a compulsion. And the friends she drank with reinforced that habit. "That was the norm," she says.

So Dierker set out to change her weekend routine. Instead of drinking beer on a Friday night, "I'd drink seltzer water ... and dance in the playroom with my son," she says.

"I had to consciously slow down and learn to sip instead of gulp."

Slowly she developed a new relationship with alcohol. To pull this off, she learned tools and techniques to help her keep it in check. For instance, her old routine was to drink one drink after another, back to back — what's known as chain drinking.

"I had to consciously slow down and learn to sip instead of gulp," Dierker says.

And just as people learn to eat less by counting calories, she learned to count her drinks and set limits. "For me, that really helps."

Dierker says that for the most part it works for her. She has no problem just having a glass of wine with dinner or a couple of drinks with friends.

And every so often she takes a monthlong break from drinking so it doesn't start to creep up.

"I feel I'm in the driver's seat again," Dierker says. She no longer drinks out of habit. "I've gotten to the point where it's a treat again and I look forward to it."

Since Donna first tried moderation, the concept of helping people try to moderate their drinking has gained traction. The Substance Abuse and Mental Health Services Administration (SAMHSA) lists Moderation Management as an evidence-based program.

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And the National Institute on Alcohol Abuse and Alcoholism has reviewed one study that found that the moderation approach offered by Moderation Management and ModerateDrinking.com can help some heavy drinkers cut back.

But many experts would like to see more evidence of its effectiveness. "It's only one study," says NIAAA Director George Koob.

Moderation as an alternative to abstinence certainly doesn't work for everyone.

And the tricky part of the moderation path is that there's no way to know which heavy drinkers can learn to control their drinking rather than having to give it up completely.

"For everybody, it's really a process to figure out what's going to work and what's not."

There isn't enough data to know if a certain person with a certain profile is going to be successful, says Koob. "The science just hasn't been done."

And to some, the concept of moderation is controversial.

Some critics point to the story of the woman who founded Moderation Management. After leaving the organization, she struggled with drinking, caused a fatal drunk-driving crash and then committed suicide.

"For everybody, it's really a process to figure out what's going to work and what's not," says Sarah Vlnka. She's a social worker and therapist in Michigan who has struggled with alcohol.

In her case, after about a year and a half of experimenting with moderation she realized that she wanted to quit drinking entirely.

In part, she realized she was spending too much time thinking about managing the process.

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"I got tired of it," she says. "Anything that takes [so much] brain space doesn't feel worth it." So she stopped. In her case, moderation led her to abstinence.

Mariani says there are lots of heavy drinkers who are resistant to help or the idea of abstinence, but are open to the idea of cutting back.

"As a starting place," Mariani says, "moderation is often a goal that everyone can agree on."

And it also addresses what many experts see as a treatment gap. In the past, it was only the people with the most severe cases of alcohol dependence who got treatment or help.

With the moderation approach, "it's a way of reaching people earlier," says Dr. William Miller, professor emeritus of psychology and psychiatry at the University of New Mexico and author of Controlling Your Drinking. It's a way of meeting people where they are.

And if moderation doesn't work? It may be a step on the path to abstinence.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

Scientists Urge Temporary Moratorium On Human Genome Edits

Fri, 03/20/2015 - 5:12pm
Scientists Urge Temporary Moratorium On Human Genome Edits March 20, 2015 5:12 PM ET Listen to the Story 3 min 40 sec  

A new technology called CRISPR could allow scientists to alter the human genetic code for generations. That's causing some leading biologists and bioethicists to sound an alarm. They're calling for a worldwide moratorium on any attempts to alter the code, at least until there's been time for far more research and discussion.

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It's not new that scientists can manipulate human DNA — genetic engineering, or gene editing, has been around for decades. But it's been hard, slow and very expensive. And only highly skilled geneticists could do it.

Recently that's changed. Scientists have developed new techniques that have sped up the process and, at the same time, made it a lot cheaper to make very precise changes in DNA.

There are a couple of different techniques, but the one most often talked about is CRISPR, which stands for clustered regularly interspaced short palindromic repeats. My colleague Joe Palca described the technique for Shots readers last June.

Why scientists are nervous

On the one hand, scientists are excited about these techniques because they may let them do good things, such as discovering important principles about biology. It might even lead to cures for diseases.

The big worry is that CRISPR and other techniques will be used to perform germline genetic modification.

Basically, that means making genetic changes in a human egg, sperm or embryo.

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Those kinds of changes would be passed down for generations. And that's something that's always been considered taboo in science.

One major reason that it's considered off limits, ethically, is that the technology is still so new that scientists really don't know how well it works.

The fear is that mistakes could be made, causing some new disease by accident. That disease could then be passed down for generations.

Another concern is that this could open the door to what people call designer babies.

If you let someone manipulate the genes in an egg or embryo to prevent a disease, where would you draw the line?

Microbiologist Jennifer Doudna at the University of California, Berkeley. She's co-inventor of the CRISPR-Cas9 technology — a tool that's recently made the snipping and splicing of genes much easier.

Cailey Cotner/UC Berkeley

People could use this, possibly, to make babies that are smarter, taller or better athletes. Hair and eye color could be manipulated. IQs could be boosted or lowered.

It raises all kind of Brave New World issues about genetically engineering the human race.

Moratorium gains momentum

In the last week or so, there's been a flurry of statements from several groups of scientists warning about all this. MIT's Technology Review had an in-depth report on the whole issue a couple of weeks back, if you want to learn more.

This week, groups that include the University of California's Jennifer Doudna, one of the researchers who developed CRISPR, essentially called for a moratorium on any attempt to do modification of the human germline using these techniques — at least until there's been more time for public discussion and more research to understand how well it works and how safe it is.

In interviews, several of the scientists and bioethicists issuing these statements said they are concerned things are moving too fast.

Last week, another group that includes some of the researchers who developed another gene editing technique, went even further and called for moratorium on doing any research in the laboratory that could lay the groundwork for attempting germline modification.

Not all scientists support this movement. Some say this powerful new technology is needed to advance science. It could produce important knowledge about stem cells, infertility — all sorts of things, they point out.

Still, there are concerns that rogue scientists could take information being published about such techniques and use the recipe in ways many people would find unethical — and dangerous.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

Wireless Sensors Help Scientists Map Staph Spread Inside Hospital

Fri, 03/20/2015 - 2:53pm
Wireless Sensors Help Scientists Map Staph Spread Inside Hospital March 20, 2015 2:53 PM ET

Grey lines connecting health care workers (marked with "+") and patients represent contacts between them. The red figures are carriers of MRSA.

Obadia et al./PLOS Computational Biology

Whatever lands you in the hospital or nursing home also puts you at risk for acquiring an infection, possibly one that's resistant to antibiotic treatment.

Staph infections are common problems in health care facilities, and many Staphylcoccus aureus bacteria are now resistant to drug treatment.

Chances are you've heard of MRSA, which is the kind of staph that isn't susceptible to methicillin, the antibiotic that used to be a silver bullet.

Staph is happy to live on your skin or up your nose. A person can harbor the bacteria and wind up spreading them without showing any signs of infection. A third of people carry staph in their noses, according to studies cited by the Centers for Disease Control and Prevention. About 2 percent of people carry MRSA.

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Staph can spread through close contact with someone who's got a full-blown staph infection, such as an infected wound, or has been colonized by the bacteria.

Good hygiene, including diligent hand washing, and careful attention to disinfection, can help curb staph infections in health facilities.

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But wouldn't it be cool track in detail how staph moves from person to person in the real world?

Some French researchers tested a way to do it. They outfitted 261 health care workers and all 329 patients in a long-term care hospital with wireless sensors that recorded their interactions with one another every 30 seconds.

The researchers also took weekly bacterial samples from the people's noses and used genetic tests to fingerprint the staph. That way the scientists could trace the movement of bacteria from person to person.

The scheme worked.

Over four months of tracking and testing, the researchers mapped the hops that bacteria made from one person to another to another. They documented 173 transmissions of staph between people in the study. About a third of patients who had been free of staph when admitted were colonized within a month.

The findings were published Thursday by PLOS Computational Biology.

"Bottom line is, monitoring contact networks is easy," Thomas Obadia, lead author of the research paper, tells Shots in an email. "Recorded signals are indeed correlated with transmission, so such data should be used to design targeted control measures, in hospital or [a long-term care facility]. While this is more of a methodological paper, we're now trying to use the same data in a more applied way, but again this part is still a work in progress."

Obadia, a doctoral student at Université Pierre et Marie Curie in Paris, says, "the next step is to identify contact patterns that put individuals more at risk of getting colonized (and therefore at a higher risk of developing an infection later on)."

"The brilliant thing that they did was to bring together the power of digital epidemiology methods," says David Hartley, an infectious disease epidemiologist at Cincinnati Children's Hospital Medical Center.

The work by the French group confirms that when it comes to infection transmission of bacteria like staph, it really does matter who comes into contact with whom, he tells Shots. "Assumptions are sometimes wrong," he says. "We're surprised all the time when it comes to infectious disease."

And the findings suggest, he says, "that it's possible to prevent new [staph] infections by carefully managing close-proximity interactions between patients and health care workers."

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

Despite A Wave Of Data Breaches, Fed Says Patient Privacy Isn't Dead

Fri, 03/20/2015 - 9:07am
Despite A Wave Of Data Breaches, Fed Says Patient Privacy Isn't Dead March 20, 2015 9:07 AM ET

Partner content from

Charles Ornstein

It's hard to keep track of even the biggest health data breaches, given how frequently they seem to be happening.

Just Tuesday, health insurer Premera Blue Cross disclosed that hackers broke into its system and may have accessed the financial and medical records of some 11 million people. Premera's announcement comes weeks after another health insurer, Anthem Inc., announced that it too had been hacked—and that the records of nearly 80 million people were exposed.

The task of investigating medical data breaches falls to the Office for Civil Rights, a small agency within the Department of Health and Human Services.

Last month, ProPublica and NPR reported how, as the number of breaches has increased, the office infrequently uses its authority to fine organizations and health providers that fail to safeguard patient records.

The office's director, Jocelyn Samuels, spoke Monday to health privacy and security experts gathered in Washington, D.C., for the National HIPAA Summit, named for the Health Insurance Portability and Accountability Act.

After her talk, Samuels sat down with ProPublica to talk about the current state of health privacy. The conversation has been edited for length and clarity. Highlights are below; a fuller version is available on ProPublica's website.

To start off with, the Anthem breach is still at the top of mind for so many people. Does this change the landscape in terms of health data breaches?

We won't know until after we have investigated what the causes of the Anthem breach are or were, or whether there are concerns about HIPAA compliance. But I think that it illustrates both the increasing risks that exist in the cybersecurity space and the need for covered entities [health providers and others subject to HIPAA's requirements] to continue to update and evaluate their risk analyses to ensure that their risk management plans adequately anticipate all of the kinds of threats they may face.

Since HIPAA was passed in 1996, how would you say the state of play has changed with respect to patient privacy and the security of records?

The ability to access electronic health records is something that we obviously have clarified and expanded over time since HIPAA was enacted. And I anticipate that we will continue to evaluate the application of HIPAA standards to emerging issues, whether they are posed by new technology or new forms of risk that aren't being adequately addressed. From a macro perspective, we are seeing an explosion of new approaches to delivering health care, to treating patients, to sharing information. And that changes on an exceptionally rapid basis, and so ensuring that we are providing adequate guidance about how HIPAA applies and what the standards are in these new environments is something that's a high priority.

Some people have suggested that the notion of patient privacy is sort of outmoded and that you really don't have privacy anymore. Do you accept that?

No. I think that you are talking about some of the most intimate facts about any individual, whether it is their health condition or their diagnosis or their treatment choices, and that it is really critical to ensure that they feel confident that that information will be protected from public disclosure. That's the underlying premise of patient involvement in health care decision-making, that they can entrust their providers with this really intimate information knowing that it won't be misused or inappropriately disclosed. Although there are new threats and cybercriminals get smarter every day, we have to do our best to keep up and ensure that there are adequate protections in place so that we can gain the benefits that technology and delivery system reform are promising.

Your office has the ability to issue fines in ways that a lot of federal agencies can't and in denominations that a lot of federal agencies can't. You've noted that you used them about two dozen times. Is that enough?

You know, each case depends on its facts and I do think that we have been committed to using settlement agreements and monetary recoveries in situations where we think that the conduct has been egregious or where we want to create a deterrent or where we feel that the monetary settlement will help to reinforce the message that we're serious about HIPAA compliance. That said, we are very serious about HIPAA compliance even in situations where we don't seek monetary settlements or civil money penalties. And I think if you look at our corrective action plans [agreements in which providers promise to make changes following a complaint], you will see that those are uniformly robust efforts to ensure that covered entities and business associates undertake the infrastructure and structural reforms that are necessary to ensure compliance going forward.

ProPublica is a nonprofit investigative reporting newsroom based in New York. Has your privacy been violated? Please share your story to help inform our reporting.

Copyright 2015 ProPublica. To see more, visit http://www.propublica.org/.
Categories: NPR Blogs

'Looks Like Laury' Shines The Power Of Friendship On A Failing Mind

Thu, 03/19/2015 - 3:29pm
'Looks Like Laury' Shines The Power Of Friendship On A Failing Mind March 19, 2015 3:29 PM ET

Laury Sacks and her husband, Eric. The actress and writer developed frontotemporal dementia in her late 40s and died in 2008 at age 52.

Courtesy of Eric Sacks

More than 5 million Americans have dementia, and that number is only climbing. Each case leaves some people wondering what's left in a friendship when the bond between confidants becomes literally unthinkable, when language and thinking fail. But a good friend can sometimes help in ways that a spouse, a child or a paid professional can't.

Looks Like Laury, Sounds Like Laury, a documentary now streaming on worldchannel.org through April 9, explores that terrain in the life of one woman with frontotemporal dementia, a progressive brain disease that tends to strike earlier than Alzheimer's and sometimes affects language skills first.

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The film, by Pamela Hogan and Connie Shulman, is at least as compelling for what it says about friendship's many faces and textures as for what it says about loss. It's worth watching closely — and taking notes.

We meet Laury Sacks, a charismatic New York actress, writer, wife and mother of two young children, when she is in her late 40s. She's already showing signs of what doctors initially diagnose as "expressive aphasia" — she can understand everything going on around her, it seems, but is having a hard time voicing her own ideas. Her friends are among the first to notice that Laury, usually quick-witted and chatty, suddenly isn't.

Initially, everyone assumes the situation is temporary. As her husband and kids grapple with the change, Sacks' large circle of best friends, including Hogan, a documentarian, and Shulman (an actress now well-known as "Yoga Jones" in Orange is the New Black), suggest the film to their pal as a way to help her express what she's going through.

Sacks jumps at the chance.

One of the first friends viewers meet is Nelsie Spencer, a fellow actress and novelist who co-wrote a play with Sacks some years earlier. Sacks' loss of language seems to especially stymie Spencer.

"It's like I'm a talk-show host, but my guest can't speak," Spencer tells the camera. "I talk and talk and talk, but I have no idea if she's interested in anything I'm saying, or if she's thinking ... 'When's she going to leave?' "

The usual chitchat among pals about family dissolves in a mystifying "Who's on First" loop. Laughter, hugs and shared walks, Spencer learns, seem to work better than 20 questions.

On Aging Camp For Alzheimer's Patients Isn't About Memories

Shulman is the problem-solving pal, a fixer of misunderstandings and hurt feelings. Some months into the filming, as daily tasks and errands become more confusing for Sacks, it's clear she needs more help during the day. Her husband, Eric, proposes hiring a health care aide to help Laury when he's at work. The helper could preserve his wife's independence, he hopes, while keeping her safe. Laury looks dubious and worried, but Shulman helps convince her.

Additional Information: So, Your Friend Has Dementia ...

There are as many ways to be a good friend to someone with moderate or advanced dementia as there are to be friends with anyone else, specialists say. Don't be afraid to visit or stay close to a pal with the illness. A few tips, adapted from a list by the Alzheimer's Society in the U.K.:

  • Use clear, simple and reassuring language as the illness progresses, but not baby talk. Nobody likes to be talked down to. Nonverbal communication can be just as meaningful — eye contact, gestures, a squeeze of the hand.
  • Never talk over your friend's head, as though she's not there, especially if you're talking about her. Include her in the conversation. Don't know where to start? Bring along photos, mention a favorite sports team or read a magazine together. Watch and listen. With time and support, she can make herself understood.
  • Look for the meaning behind your friend's words, even if they don't seem to make much sense. Whatever the details of the story, the person is usually trying to communicate how he feels. Avoid questions that require specific, factual answers and might make your friend feel pressured.
  • Help your friend stay active and involved in the outside world. Gardening, painting and other hobbies you've enjoyed together can help preserve your friend's self-esteem and dignity. A shared activity promotes a sense of belonging and helps bridge the gaps when words don't flow.
  • Enjoy music together. Musical memory is often retained when other memories flee.
  • Exercise helps everyone's mood. Take your friend for a walk in a pretty place.
  • Relax and keep your sense of humor. Funny things happen in life, even when dealing with a serious illness. Your friend is likely to appreciate a laugh, as long as she's included.

"I think, if anything," she tells Laury, "it would take the edge of the situation off. ... I don't know whether you get scared when you have to go on an errand, or something — that it's not going to go well, or that somebody won't understand you, or that you'll lose something." Having somebody close by, Shulman suggests to her friend, could "keep that fear from happening."

And the helper wouldn't be "a dud — some drag of a person," Shulman assures Laury. Rather, "somebody fun, like you!"

"Yes!" Laury finally says, and smiles. "Yes!"

That experiment doesn't work so well. A professional aide is an aide, after all, not a friend, and Sacks bristles under the constraints of a "minder" — even a well-meaning minder that she clearly needs. At this point, as Sacks' frustration spills into anger at her situation, it's another friend — actor, writer and director Nicole Quinn — who supplies what's needed at that moment. Sacks needs somebody who will let her shout and vent.

"Aaaaaahhhhh!" she screams, during a fast-paced walk through the park with Quinn. "What?" Quinn asks her quietly, matter-of-factly, adding, "That's right. You can yell. You can yell. You can scream. I don't care." Quinn matches Sacks' pace and stays calm. Gradually Sacks calms down, too. The two sit down near a pond and share a cigarette.

Pamela Hogan (left), director and producer of the documentary, with her friend Laury Sacks in 2000.

Courtesy of Jeffrey Kimball

"You can be angry about it," Quinn tells Sacks. "Just don't hold it in. ... I don't know that it's helpful to you." Gradually, Sacks' speech gets a little more fluid as she plays off what Quinn is saying, and the two are able to talk about Sacks' frustration. Soon both are relaxed and smiling. They laugh and share a few wry observations, like the longtime friends they are. It's clear Sacks feels seen, understood, less alone.

Her illness progressed quickly, and Laury Sacks died at age 52, in 2008. She left behind Eric, a son named William and a still-young daughter, Talley. As it turns out, Talley also had a best friend during that difficult time — Connie Shulman's sweetly wise and dimpled daughter, Gus Birney, an elementary school classmate of Talley's at the time of the filming.

"Talley — she's really my best friend, and she thinks I'm her best friend, too," Gus tells the camera early in the film, over scenes of the girls coloring together and walking arm-in-arm on the playground. "Sometimes we break up, but Talley always gets us back together."

Young Gus explains that Laury Sacks "is different than many other moms ... so Talley is different than many other friends because of that."

Even in elementary school, Gus recognizes the limits of friendship — and also its unique power.

"I can't ... give her something to make her feel better or to change her life," she says of Talley. "The only thing I can say is, 'I'll try to be really nice to you. I'll have lots of play dates with you. We'll even have sleepovers. We'll talk together and I'll help you through math and stuff ... and that's all I can do."

As Looks Like Laury, Sounds Like Laury shows so beautifully, friends aren't interchangeable; each one brings something special. And even though understanding and support can't solve all life's problems, sometimes it's enough.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

For A Good Snooze, Take One Melatonin, Add Eye Mask And Earplugs

Thu, 03/19/2015 - 12:40pm
For A Good Snooze, Take One Melatonin, Add Eye Mask And Earplugs March 19, 201512:40 PM ET

It's hard to sleep when the light's on and the monitor's beeping.

Roderick Chen/Getty Images

Hospitals are one of the worst places to try to get a good night's sleep, just when you need it the most. And though many have tried to muffle the noise of beeping monitors and clattering carts, the noise remains a big problem for many patients.

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But what if we looked at a night in the hospital as a long overseas flight? As you settle in, they hand out eye masks and earplugs. And you cleverly brought along melatonin, the sleep-regulating hormone sold at drugstores everywhere.

Researchers in China tested just that, and found that eye masks, earplugs and melatonin all helped. But melatonin helped the most.

They tested them by creating a fake intensive care unit with noise and lights, and getting 40 healthy adults to sleep in it. With the noise and lights off, their melatonin levels rose sharply until about 4 am, which is typical of a normal sleep cycle. They snoozed happily.

But with the noise and lights on, melatonin levels tanked. The people said they slept poorly and were anxious.

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OK, on with the eye mask. The volunteers were given their choice of eye masks and earplugs and hit the hay. They fell asleep faster, were less likely to wake up, and arose saying they slept better and were less anxious.

Sounds like a win. But many people didn't like the earplugs, saying they were uncomfortable or claustrophobic. And the earplugs didn't do enough to muffle sounds.

Now for the melatonin. The volunteers took 1 mg at bedtime and said that did the best job of improving sleep quality and reducing anxiety. They also woke up less often during the night. And the melatonin level in their blood was much higher than while wearing eye masks or earplugs.

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The researchers also tested a placebo pill, but it improved sleep only slightly.

People in an intensive care unit are very ill, the researchers note, and eye masks and earplugs might not be enough to restore normal biological sleep patterns. The study was published Thursday in the journal Critical Care.

And melatonin isn't risk free. It isn't recommended for people with high blood pressure or depression. And it can increase immune function, which can be problematic for people with autoimmune diseases or transplants.

But it would be nice if hospitals handed out eye masks and earplugs along with those no-slip socks, wouldn't it?

Now all we need is for someone to invent cheap comfy earplugs that banish the commotion.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
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Why Is Insulin So Expensive In The U.S.?

Thu, 03/19/2015 - 3:06am
Why Is Insulin So Expensive In The U.S.? March 19, 2015 3:06 AM ET Listen to the Story 3 min 51 sec  

Dr. Jeremy Greene sees a lot of patients with diabetes that's out of control.

In fact, he says, sometimes their blood sugar is "so high that you can't even record the number on their glucometer."

Greene, a professor of medicine and history of medicine at Johns Hopkins University, started asking patients at his clinic in Baltimore why they had so much trouble keeping their blood sugar stable. He was shocked by their answer: the high cost of insulin.

Greene decided to call some local pharmacies, to ask about low-cost options. He was told no such options existed.

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"Only then did I realize there is no such thing as generic insulin in the United States in the year 2015," he says.

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Greene wondered why that was the case. Why was a medicine more than 90 years old so expensive? He started looking into the history of insulin, and has published a paper about his findings in this week's issue of the New England Journal of Medicine.

The story of insulin, it turns out, starts back in the late 1800s. That's when scientists discovered a link between diabetes and damaged cells in the pancreas — cells that produce insulin.

In the early 1920s, researchers in Toronto extracted insulin from cattle pancreases and gave it to people who had diabetes, as part of a clinical trial. The first patient was a 14-year-old boy, who made a dramatic recovery. Most others recovered as well. Soon, insulin from pigs and cattle was being produced and sold on a massive scale around the world.

Acids, alcohol and pancreatic tissue were separated, bathed and mixed in this laboratory of a 1946 insulin factory in Bielefeld, Germany.

Chris Ware/Getty Images

But for some, the early forms of the medicine weren't ideal. Many people required multiple injections every day, and some developed minor allergic reactions.

Over the next few decades, scientists figured out how to produce higher-quality insulin, Greene says. They made the drug purer, so recipients had fewer bad reactions. They also made the substance able to last longer in the bloodstream, which led to more stable blood sugar levels and less frequent injections.

"All of these innovations helped to make insulin a little bit safer, a little bit more effective," Greene says.

Then, in the 1970s, scientists developed a new technique they could use for insulin production, called recombinant DNA technology. It involves putting the human gene for insulin into bacteria, which then produce large quantities of the hormone.

Then, a funny thing happened, Greene says: "The older [animal] insulin, rather than remaining around on the market as a cheaper, older alternative, disappeared from the market."

Greene says there's no one reason that companies stopped producing the older animal versions, but they clearly felt it would not be profitable.

Dr. Kevin Riggs, a professor of medicine at Johns Hopkins and co-author of the new insulin study, says the newer, recombinant version of insulin may have had some advantages in terms of convenience and fewer side effects. But there was probably something else at work — doctors being influenced by marketing.

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"A lot of time we get caught up in some of the hype," Riggs says. "When a new medicine comes out and it has theoretical advantages, we buy into that and think newer is better."

The company that made the new form of insulin, called Humulin, launched a large marketing effort aimed at doctors and patients shortly after its release.

But newer drugs aren't always better, says Dr. Adriane Fugh-Berman, a professor of medicine and pharmacology at Georgetown University. That's partly because drug companies don't have to prove that a new drug is better than what is already on the market — they just have to prove that it's not worse.

"In government-funded studies that have compared older drugs to newer drugs, often older drugs come out looking better or equal to newer drugs," Fugh-Berman says.

For example, some patients have found that animal-derived forms of insulin work better for them, she says. They cause less variability in blood sugar, and fewer episodes of hypoglycemia.

And while those older kinds of insulin are not available in the U.S., they are available elsewhere.

"In Canada, there actually is still an animal-derived insulin on the market, and that was really due to the efforts of consumer advocates," Fugh-Berman says.

As the older versions have vanished in the U.S., newer versions have stayed expensive. The drug can cost up to $400 a month. Because of that high cost, many of the estimated 29 million people living with diabetes in the U.S. can't afford it.

Some industry analysts expect insulin costs to fall in the future. That's because the most recent insulin patents have expired, paving the way to more competition. The FDA has also decided to allow biosimilar versions of insulin onto the market. These are substances that act in a similar way to existing forms, but are not necessarily identical.

"But there's concern that the cost savings [with biosimilar insulin] will be nowhere near as robust as they have been with [other types of] generic drugs," Greene says.

"Rather than reducing costs by 80 percent, as many generics have done, they might reduce costs by 40 percent," Riggs says.

Greene says the point of their recent study about insulin costs isn't to simply blame the drug industry. "We do not believe that there is a conspiracy to keep insulin expensive," he says.

Rather, he says, incremental improvements in the drug — and the disappearance of older versions, which aren't as profitable — are more likely explanations.

Greene says innovations in insulin over the past 90 years have been significant. But, he says, it's important to ask this question: "Do these innovations merit the loss of affordable insulin?"

For patients at his clinic who can't afford insulin, Greene says, the answer is clear. A more affordable version is needed.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
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Blue Shield Of California Loses Exemption From State Taxes

Wed, 03/18/2015 - 8:27pm
Blue Shield Of California Loses Exemption From State Taxes March 18, 2015 8:27 PM ET

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California tax authorities have stripped Blue Shield of California, the state's third largest insurer, of its tax-exempt status in California and ordered the firm to file returns dating to 2013, potentially costing the company tens of millions of dollars.

At issue in the unusual case is whether the company is doing anything different from its for-profit competitors to warrant its tax break. As a nonprofit company, Blue Shield is expected to work for the public good in exchange for the exemption from state taxes.

"We're talking about a $10 billion public asset, and the only real return the public is getting is $35 million in charitable contributions each year? That's just a lousy deal. It's time to cash in that asset."

The California Franchise Tax Board actually revoked the exemption in August, but the move only became public when it was reported Tuesday, by the Los Angeles Times. The board said the rationale behind its decision was "not public information."

One likely explanation, however, is the $4.2 billion the company reports it is holding in financial reserves. That's four times larger than the national trade organization, Blue Cross and Blue Shield Association, requires members to hold in surplus to pay out member claims.

Over the past decade, the company has contributed a fraction of that amount — about $325 million — to its charitable foundation. (Kaiser Health News receives financial support from the Blue Shield of California Foundation.)

At the same time, Blue Shield's premium rates are similar to comparable for-profit competitors, and the company's former chief executive earned a hefty $4.6 million per year.

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Anthony Wright, who directs the consumer advocacy group California Health Access, said revoking the company's tax exemption will likely not increase premiums for consumers. But it could potentially add significant funds to the state's coffers, he said, which could be used to bolster the health care safety net and expand insurance options for Californians who remain uninsured.

The move by the state's tax board is "good for the state and it's good for taxpayers, " Wright said.

Blue Shield of California's former director of public policy, Michael Johnson, resigned from the post last week after raising concerns internally that the company was not doing enough for the public good. This week he went public with his concerns, faulting the insurer in particular for what he considers paltry annual contributions to its foundation.

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"We're talking about a $10 billion public asset, and the only real return the public is getting is $35 million in charitable contributions each year? That's just a lousy deal," he said. "It's time to cash in that asset."

"For over 70 years, Blue Shield has been a tax exempt entity, subsidized by taxpayers in order to provide benefits to the public," Johnson added. "But it's demonstrated that it's either unwilling or incapable of serving the public good."

He argued it is time for the company to be converted to a for-profit firm owned by private investors, with all proceeds from the sale transferred to the public.

There's a precedent for that — in the 1990s, Blue Cross of California, at the time a nonprofit insurer, converted to a for-profit company. Some of the assets held by the nonprofit were used to create large foundations in the state, including the California Endowment and the California HealthCare Foundation. But the difference in that case was that the conversion was the insurer's choice — it wanted to become a for-profit.

Blue Shield has challenged the Franchise Tax Board's decision, insisting that it does meet the requirements for exemption from California taxes.

"Blue Shield of California is a mission-driven not-for-profit health plan with a demonstrated commitment to the community," the company said in a written statement. "A longtime supporter of healthcare reform, we limit our net income to 2 percent of revenue and have devoted $325 million to our foundation's efforts to improve the health safety net and combat domestic violence."

Blue Shield is already paying federal taxes. Congress passed a tax reform law in 1986 that essentially stripped Blue Cross and Blue Shield of their federal tax-exempt status, after rival insurers complained. The two Blues unsuccessfully argued against the move, saying they deserved the tax-exempt status because of their efforts involving charitable, community-based health care.

Following the change in the federal law, "non-profit Blue plans have paid billions of dollars in federal income taxes," said Marie Cocco, a representative of the Blue Cross Blue Shield Association.

Gerald Kominski, a professor of health policy at the University of California Los Angeles, said that the decision to revoke Blue Shield's tax exemption "sends a very, very strong message to large nonprofits to be sure that you're functioning as a nonprofit, that you're not shielding assets or revenue from taxation and that you're generally serving the public good."

Julie Appleby of Kaiser Health News contributed reporting to this story.

Copyright 2015 Kaiser Health News. To see more, visit http://www.kaiserhealthnews.org/.
Categories: NPR Blogs

How Much Can Women Trust That Breast Cancer Biopsy?

Wed, 03/18/2015 - 4:11pm
How Much Can Women Trust That Breast Cancer Biopsy? March 18, 2015 4:11 PM ET

Pathologists use slides like this one to look for signs of cancer in breast tissue.

Boilershot Photo/Science Source

When a woman is diagnosed with breast cancer, the person who does the diagnosing is a doctor she never sees — the pathologist.

But though pathologists do a great job of identifying invasive cancer, they aren't as good at spotting two less clear-cut diagnoses that bring women a lot of uncertainty and worry, a study finds.

The doctors correctly identified invasive breast cancer 96 percent of the time compared with an expert panel, according to a study published Tuesday in JAMA, the journal of the American Medical Association, and correctly identified normal tissue 87 percent of the time.

But they misdiagnosed ductal carcinoma in situ, or DCIS, 16 percent of the time, and atypia, or atypical hyperplasia, 52 percent of the time. That's troubling, because both conditions can go on to become invasive cancer.

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With atypia, 17 percent of the readings were false positives, meaning that a woman might undergo surgery and other treatment she doesn't need, and 32 percent were false negatives, meaning women wouldn't know they are at increased risk of cancer.

"The first thing for women to remember is that making a diagnosis from tissue is part science and part art," says Dr. Jean Simpson, president of Breast Pathology Consultants in Nashville, Tenn., who was not involved in the study.

The science involves putting thin slices of biopsy samples onto glass slides, so a pathologist can look at them under a microscope.

Invasive cancer is easy to spot, according to Dr. David Rimm, a pathology researcher at Yale School of Medicine. "Here are criteria I can write down: This cluster of cells has enlarged and irregularly shaped nuclei and architecturally irregularly shaped clusters and high nuclear to cytoplasmic ratio."

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But what if the sample has just some of those things? "And what if it has some suggestion of enlargement or some suggestion of arch irregularity?" Rimm asks. "Then we get into that gray area. That's what happens. That's the real world."

And as the JAMA study shows, it's not hard to fall into the gray area with DCIS, and especially atypia.

The study had three expert pathologists classify samples from 240 women, then gave them to 115 doctors to identify. It was a clever way to design a study, but it doesn't reflect how pathologists work, which includes reviewing the woman's medical record and often asking a colleague for advice on a confusing or complex slide. "Frequently it might be seen by more than one other person," Rimm says.

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Experience matters, too, Rimm says. "When you've looked at breast cancer for 20 or 30 years you develop an eye where you can see something that you can't really define."

And the doctors will confer and try to make their best interpretation. But we should be able to do better than that, says Rimm, who was coauthor of an editorial accompanying the study. "There's a need for more scientific approaches to these borderline cases. Unfortunately, there's relatively little focused research in this area."

But for women who are wondering what do to with a diagnosis of DCIS or atypia, it's important to know that the diagnosis isn't infallible, both Simpson and Rimm say.

"It's a question of uncertainty and how you want to deal with it," Rimm says. His own mother went through this with a breast biopsy, he says. "She had the ability to call her son and say, 'David, what should I do?' I said, 'Let's see what happens; let's watch it.' "

But of course he did also say, "Mom, how about we look at it here at Yale — send it to us." He agreed with the first diagnosis.

Those of us without a pathologist in the family are more than justified in getting a second opinion, Simpson says. "I will tell patients that a second opinion is a fairly inexpensive process," and insurance often pays for it. "And what value can you put on peace of mind?"

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Teens Say They Change Clothes And Do Homework While Driving

Wed, 03/18/2015 - 3:46pm
Teens Say They Change Clothes And Do Homework While Driving March 18, 2015 3:46 PM ET

Hey, I'm not texting. Surely this is safe.

iStockphoto

While most teenagers recognize that texting while driving is a bad idea, they may be less clear about the risk of other activities – like changing clothes.

Twenty-seven percent of teens say they sometimes change clothes and shoes while driving, a study finds. They also reported that they often change contact lenses, put on makeup and do homework behind the wheel.

"We were pretty surprised at the changing clothes bit," says David Hurwitz, an assistant professor of transportation engineering at Oregon State University who led the study. "Teens are busy, I guess."

The good news is that awareness campaigns about texting while driving are working, Hurwitz says; in his survey, around 40 percent of the teenagers said they texted behind the wheel, which is lower than in earlier studies.

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"But there are all sorts of other distractions and teens have no awareness of the risks," Hurwitz notes. Talking on the phone, changing radio stations and adjusting the GPS setting can be just as distracting – and dangerous – as texting, he says, and driver education programs should focus on teaching kids to avoid any sort of multitasking behind the wheel.

Distracted driving is a leading cause of accidents among drivers of all ages.

The researchers also asked the teens surveyed to participate in an interactive drivers education class in high school in Oregon, Washington and Idaho. To help kids understand the risks of distracted driving, the researchers had try multitasking in less potentially lethal locales, like the classroom.

For example, instructors asked students to try writing down numbers on a chalkboard while having a phone conversation. "This was just a scenario to demonstrate that having a distraction can really prevent you from doing basic tasks," Hurwitz says.

After participating in the 20- to 40-minute course, the study found that students were slightly better at recognizing the risks of multitasking behind the wheel. The results were published Monday in the Journal of Transportation Safety and Security.

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"This study seems promising," says Bruce Simons-Morton, a behavioral scientist with the National Institutes of Health who researches adolescent driving and accident prevention. "There really hasn't been much research on how you can convince teens to alter their behavior through classroom interventions," he notes. "So this is a good start."

Other research shows that parents also play an important role in nudging teen drivers toward safety, he adds.

While cell phones are the biggest distraction for both teens and adults, Simons-Morton notes, "doing anything that requires the driver to take his or her eyes off the road is dangerous. So the most important message they need to hear is 'Keep your eyes on the forward roadway.' "

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Risks Run High When Antipsychotics Are Prescribed For Dementia

Wed, 03/18/2015 - 1:35pm
Risks Run High When Antipsychotics Are Prescribed For Dementia March 18, 2015 1:35 PM ET

Is the benefit from antipsychotic drugs for people with dementia symptoms worth the risk?

iStockphoto

When you hear about dementia, the chances are you think about memory problems.

But other common symptoms of dementia, including Alzheimer's, can be even more troublesome to patients and their families: aggressiveness, agitation, delusions and hallucinations.

The lower the number, the riskier a drug. A University of Michigan analysis finds that 1 in 26 older patients would be expected to die within six months of starting Haldol for symptoms of dementia.

JAMA Psychiatry

More than 90 percent of patients with dementia will experience some of those symptoms over the course of their illness, says University of Michigan psychiatrist Donovan Maust. And it's these burdensome symptoms that often lead doctors to prescribe antipsychotic medicines for these patients.

But the medicines are particularly risky for older patients with dementia. Years ago, the Food and Drug Administration required makers of the drugs to warn that they raised the risk for death when prescribed to control behavioral problems in demented patients. What's more, the drugs were never approved for that use.

Despite the risks and the lack of FDA approval for dementia symptoms, the drugs are widely prescribed to these vulnerable patients. "It really speaks to how distressing these behaviors are that the use of the medicines persists," Maust tells Shots.

He and his colleagues decided it was time to get a better bead on the risks and to see if some medicines were better choices than others. The researchers pored over more than 10 years of data for patients 65 and older from the Veterans Affairs Administration comparing the records for 46,000 patients who got one antipsychotic drug or antidepressant for symptoms of dementia with an roughly equal number of patients in similar circumstances who didn't receive an antipsychotic drug.

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For the most part, the people were living at home, not in nursing homes or hospitals.

The key question: What happened to patients during the first six months of after diagnosis? By comparing the number of deaths among patients who received antipsychotic drugs with those among the patients who didn't get them, the researchers were able to estimate the risks.

The researchers also boiled down their findings in a way that could be useful for busy doctors and families trying to decide what to do. How many older patients would have to be on a drug for one of them to die within six months? The shorthand for that is the number needed to harm, or NNH.

What did they find? Haloperidol, one of the oldest antipsychotics, was the riskiest. The analysis found that among 26 elderly people taking the drug, brand name Haldol, for dementia symptoms, one would be expected to die within six months. That's an NNH of 26.

For other commonly prescribed antipsychotics the NNHs break down like this: 27 for Risperdal (generic name risperidone); 40 for Zyprexa (olanzapine); and 50 for Seroquel (quetiapine).

The researchers also looked at the risk for antidepressants, which have been tried as an alternative. The risks are lower — the NNH is 166. But "there's not a ton of evidence that they're especially useful" for dementia symptoms, Maust says.

The results were published online Wednesday by JAMA Psychiatry.

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A recent report by the Government Accountability Office found that among older demented who aren't in nursing homes, the chance of being prescribed an antipsychotic is about 1 in 7. The GAO report recommended that the government do more to curb the use of antipsychotics in patients with dementia.

Looking back through the VA records comes with some drawbacks. The researchers could have made errors in matching patients and adjusting for other health conditions and medicines taken. Also, almost all the people in the study were men.

Still, the work goes further than previous studies by seeing what happens over six months after the initial diagnosis. The results also depict a higher risk than seen in earlier studies.

"My hope would be that the findings would part of the process for raising the bar for when these medicines are used," Maust says.

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Your Drinking Habits May Be Influenced By How Much You Make

Tue, 03/17/2015 - 5:13pm
Your Drinking Habits May Be Influenced By How Much You Make March 17, 2015 5:13 PM ET Cultura/Liam Norris/Getty Images

To keep people from getting into trouble with alcohol, it would help to know why they're at risk.

Genes make some people more susceptible to dependence or addiction, while the surroundings exert a stronger pull on others. But it's been devilishly hard for researchers to sort those out. Context — who's drinking where and when with whom — matters a lot.

Add in money and it gets even trickier. And we're not talking about whether you can afford microbrews.

The Salt Moderate Drinker Or Alcoholic? Many Americans Fall In Between

A person's income level influences the push and pull of genes and the environment, according to a study published Tuesday in the journal Alcoholism: Clinical and Experimental Review.

There was a lot more variation in how much people drank if they had lower incomes, with some drinking heavily and others drinking not at all, the researchers found. By contrast, people with higher incomes were more likely to drink, but also more apt to moderate their drinking.

One in 3 American adults drink too much, according to the Centers for Disease Control and Prevention.

Genetics had a bigger influence on drinking habits in low-income people, with environmental influences playing more of a role with higher-income people. It may be that family norms about drinking are more uniform in higher-income communities, the researchers speculate.

By now you may be wondering how they heck they figured this out.

The researchers looked at data from 672 pairs of adult twins who were interviewed twice, 10 years apart. Some of the twin pairs were identical and had the same genes, and some were fraternal, no more genetically linked than any other siblings. And each pair shared the same environment growing up.

The Salt For Fruit Flies, Alcohol Really Is Mommy's Little Helper

That gave the scientists the opportunity to tease out genetics vs. environment question more reliably than they could have for people who aren't twins.

The fact that genetics are more of a factor in the drinking habits of low-income people supports the widely held belief that the stresses of being poor could trigger genetic vulnerabilities.

And it also suggests that if you want to do research on how genes influence alcohol consumption, lower-income communities would be a good place to start.

But ultimately this study shows the complex, tangled influences on drinking behavior and how they play off each other. With alcohol one of the top 10 risk factors for death, disease and disability worldwide, getting a better grip on risk factors could make it easier to prevent problems and reduce the toll.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

Workplace Suicide Rates Rise Sharply

Tue, 03/17/2015 - 3:51pm
Workplace Suicide Rates Rise Sharply March 17, 2015 3:51 PM ET

Suicide rates in the U.S. have gone up considerably in recent years, claiming an average of 36,000 lives annually.

Most people take their lives in or near home. But suicide on the job is also increasing and, according to federal researchers, suicide risk changes depending on the type of work people do.

Researchers from the National Institute for Occupational Safety and Health analyzed census data and compared suicide rates among different occupations.

They found that, between 2003 and 2010, a total of 1,719 people died by suicide in the workplace. Rates of suicide on the job declined from 1.5 per million workers in 2003 to 1.2 per million in 2007. Then the rate climbed to 1.8 per million in 2010.

Overall, men were more likely to take their lives than women. And older workers, those between the ages of 65 and 74, were more likely to commit suicide than their younger counterparts.

The study findings are being published by the American Journal of Preventive Medicine.

Why do some people choose the workplace to take their lives? Researchers don't know for sure but suggest that it could be an effort by some to protect family and friends from discovering their deceased body.

Jobs with greatest risk include law enforcement, firefighting and protective services, such as private detectives and security guards. The suicide rate for the group was 1.5 per million workers per year over the study period. The vast majority of these suicides (84 percent) involved firearms. Easy access to guns for some and the high stress in these jobs may both play roles in the workers' decisions about suicide.

Researchers say financial woes and social isolation may be to blame for an increased suicide risk among workers in farming, fishing and forestry. This occupational group had the second-highest rate of workplace suicide at 5.1 per million.

Workers at car repair shops also face an elevated risk, due in part to chronic long-term exposure to toxic chemicals and solvents that could result in memory impairment, irritability, depressive symptoms, emotional instability and brain damage, all risk factors for suicide.

Medical doctors are also at risk. And again, it's suspected that easy access to the means of suicide plays a role. In the case of doctors, the culprit is lethal medications.

In this analysis, suicide within the military was excluded since those deaths are tracked differently by the Department of Defense and the Veterans Affairs.

Researchers say the findings of the analysis underscores the need for greater understanding of occupation specific risk factors in order to develop evidence based programs to fight suicide risk on the job.

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Most N.Y. Marketplace Plans Lack Out-Of-Network Coverage

Tue, 03/17/2015 - 9:49am
Most N.Y. Marketplace Plans Lack Out-Of-Network Coverage March 17, 2015 9:49 AM ET

Partner content from

Michelle Andrews

If you're a New Yorker shopping for health insurance on the state's exchange, you won't be able to find a health plan with out-of-network coverage unless you live around Albany or in the far western part of the state.

iStockphoto

More than a dozen insurers offer plans on the New York health insurance marketplace. Depending on where shoppers live, they may have more than a hundred options to choose from.

But despite being spoiled in many ways, there's one popular feature that most New Yorkers can't find in any of the health plans offered on their state exchange: out-of-network coverage.

Except for offerings by a few insurers in far western New York and around Albany, the only options available elsewhere, including the entire New York City metro area, are health maintenance organization-style plans that cover care provided only by doctors and hospitals in the plan's network. People who go out of network for anything other than emergency care are generally responsible for the entire bill.

Although New York may not be the only place where HMOs are the sole marketplace option for many consumers, the situation there is unusual. According to figures from McKinsey & Co., in 2015 just 1 percent of people who were eligible to shop for coverage on the exchanges across the United States had only HMOs to choose from. Four percent could choose either HMOs or EPOs, the acronym for exclusive provider organizations that, like HMOs, don't generally provide out-of-network coverage for anything except emergencies.

New York officials didn't respond to requests for comment.

A number of factors contributed to the New York marketplace's dearth of alternative plans such as preferred provider organizations that typically have some coverage for out-of-network doctors and hospitals.

New York has a difficult history in the individual insurance market, which includes people who don't buy coverage through work. It's a key reason insurers are wary of offering products with out-of-network benefits.

In 1992, a state law required insurers on the individual market to cover anyone seeking a plan, regardless of their health. A few years later, the state required that two standardized HMO plans be offered in the individual market, only one of which offered out-of-network benefits, says Peter Newell, director of the health insurance project at the United Hospital Fund of New York, a research and philanthropic organization.

But it was difficult for insurers to maintain a customer base that wasn't too costly to cover since healthy people weren't required to buy insurance. "That out-of-network product attracted a lot of high users of medical care, and prices went through the roof," says Newell. Many insurers left the individual market at that time, and because of the high costs, enrollment on the individual market plummeted from more than 100,000 in 2000 to under 20,000 in 2012, according to a study by Health Management Associates for the New York Department of Health.

Following that experience, "insurers are a little gun shy" about offering plans with out-of-network coverage on the exchange, says Newell.

Another requirement has likely discouraged insurers from offering PPO-type plans, says Sabrina Corlette, project director at Georgetown University's Center on Health Insurance Reforms, who has co-authored reports about state efforts to implement the health law.

In New York, the exchange required that any insurer that sold plans with out-of-network benefits outside the marketplace to also sell plans with out-of-network benefits inside the marketplace.

Rather than offering PPOs both on and off the exchange, most insurers opted not to sell PPOs at all. "They were worried about adverse selection, so they only offered HMO-style plans," Corlette says.

Copyright 2015 Kaiser Health News. To see more, visit http://www.kaiserhealthnews.org/.
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Clues To Autism, Schizophrenia Emerge From Cerebellum Research

Mon, 03/16/2015 - 6:15pm
Clues To Autism, Schizophrenia Emerge From Cerebellum Research March 16, 2015 6:15 PM ET Listen to the Story 4 min 33 sec  

Jonathan Keleher talks with a colleague, Rafael Wainhaus, at work. Keleher was born without a cerebellum, but his brain has developed work-arounds for solving problems of balance and abstract thought.

Ellen Webber for NPR

A new understanding of the brain's cerebellum could lead to new treatments for people with problems caused by some strokes, autism and even schizophrenia.

That's because there's growing evidence that symptoms ranging from difficulty with abstract thinking to emotional instability to psychosis all have links to the cerebellum, says Jeremy Schmahmann, a professor of neurology at Harvard and Massachusetts General Hospital.

"The cerebellum has all these functions we were previously unaware of," Schmahmann says.

Shots - Health News A Man's Incomplete Brain Reveals Cerebellum's Role In Thought And Emotion

Scientists once thought the cerebellum's role was limited to balance and coordinating physical movements. In the past couple of decades, though, there has been growing evidence that it also plays a role in thinking and emotions.

As described in an earlier post, some of the most compelling evidence has come from people like Jonathan Keleher, people born without a cerebellum.

"I'm good at routine (activities) and (meeting) people," says Keleher, who is 33. He also has good long-term memory. What he's not good at is strategizing and abstract thinking.

Jonathan Keleher's Drawings

(From Top To Bottom) A sample line drawing from a neurological test known as the Rey-Osterrieth complex figure test, followed by attempted copies by Jonathan Keleher at age 15, 19, and 30. Keleher's copies show continuous, significant improvement over time, not only through adolescence, but also into young adulthood. The sketches reflect his improved planning and organizational abilities, researchers say, as well as an improved appreciation of visuospatial relationships.

Source: (Top) National Library of Medicine/National Institute of Health; (Bottom three) Courtesy of Janet Sherman

But remarkably, Keleher's abilities in these areas have improved dramatically over time. "I'm always working on how to better myself," he says. "And it's a continuous struggle."

Researchers are learning from people like Keleher that, with enough time and effort, other areas of the brain can take over some of the cerebellum's functions.

"Jon has taught me a lot about the brain's ability to reorganize and the resilience factor — the ability to compensate for areas of weakness," says Janet Sherman, chief neuropsychologist at Massachusetts General Hospital, who has been following Keleher's progress since he was 15.

As an example, Sherman shows me a sketch Keleher did when he was 19. It was his attempt to reproduce a complicated line drawing often used in neuropsychological testing. But many lines are missing, and others are out of place.

"As you can see he had significant difficulties in planning how to copy this figure," Sherman says. His effort earned just 12 of 36 possible points.

But years of practice with other spatial tasks in the real world and in video games have paid off for Keleher. At age 30, he took the test of line drawing again. "And you can clearly see the difference in how much better planned it was," Sherman says, "how much more accurate it was." This time his score was 30 out of 36 points.

One reason for the improvement is that, throughout his life, Keleher has found strategies that allow him to work around his brain's limitations, Sherman says.

For example, when Keleher was much younger he didn't have a clear concept of a face. But he realized he could refer to a concrete example to help him.

"Putting together a puzzle of a face," Sherman says, "he initially had put the eyes in the wrong place and then looked at my face and said, 'Oh, no, your nose actually goes between your eyes.' "

Sherman says Keleher's success suggests that similar strategies could help hundreds of thousands of people who have damage to the cerebellum from a stroke or tumor or infection.

And what scientists are learning about the cerebellum could help people with many other brain disorders, says Schmahmann.

It's intriguing that symptoms like weak abstract thinking and difficulty with social cues can be seen in both people with cerebellum damage and people with autism, he says. And, he says, the evidence is growing that the cerebellum is somehow involved in autism.

Cerebellum malfunction also seems to play a role in schizophrenia, Schmahmann says. So he is part of a team that is trying to help people with the disorder by stimulating the cerebellum with electricity to make it work better.

The approach looks promising, though very preliminary — the team has treated only a handful of patients so far, Schmahmann says. A published study of eight patients found that repeated, noninvasive stimulation to that part of the brain over the course of five days seemed, at least temporarily, to reduce symptoms and improve thinking.

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Obamacare Cut The Ranks Of The Uninsured By A Third

Mon, 03/16/2015 - 2:33pm
Obamacare Cut The Ranks Of The Uninsured By A Third March 16, 2015 2:33 PM ET

Partner content from

Julie Rovner

A total of 16.4 million non-elderly adults have gained health insurance coverage since the Affordable Care Act became law five years ago this month. It's a reduction in the ranks of the uninsured the the Department of Health and Human Services called historic.

Those gaining insurance since 2010 include 2.3 million young adults aged 18 to 26 who were able to remain on their parents' health insurance plus another 14.1 million adults who obtained coverage through expansions of the Medicaid program, new marketplace coverage and other sources, according to the report from the department released Monday.

Officials say the percentage of people without coverage has dropped about a third since 2012: from 20.3 percent to 13.2 percent in the first quarter of 2015.

"The Affordable Care Act is working to drive down the number of uninsured and the uninsured rate," Richard Frank, assistant secretary for planning and evaluation at HHS, told reporters. "Nothing since the implementation of Medicare and Medicaid has seen this kind of change."

Latinos, who traditionally have been least likely to have health coverage, have seen the largest drop in their uninsured rate, according to the report. The Latino uninsured rate fell 12.3 percentage points, from 41.8 percent to 29.5 percent. The uninsured rate for African Americans fell by nearly half, from 22.4 percent to 13.2 percent. The rate for non-Latino whites fell by just over 5 percentage points.

States that expanded the Medicaid program to 138 percent of the poverty line also saw large reductions in their low-income uninsured populations – an average of 13 percent among people with incomes under the new Medicaid threshold. States that haven't expanded the program still saw a decline, though not as large, of about 7 percent.

HHS officials said they expect to have better state-by-state breakdowns and estimates of the number of children covered later this year. The ACA turns five on March 23.

Copyright 2015 Kaiser Health News. To see more, visit http://www.kaiserhealthnews.org/.
Categories: NPR Blogs

Vaccination Gaps Helped Fuel Disneyland Measles Spread

Mon, 03/16/2015 - 1:15pm
Vaccination Gaps Helped Fuel Disneyland Measles Spread March 16, 2015 1:15 PM ET

Disneyland and California Adventure Park seen in late December, soon after measles was contracted by some visitors to Disneyland.

George Frey/Landov

California has been dealing with a big measles outbreak since December, when cases emerged among visitors to Disneyland in Orange County.

Measles spread quickly afterward. As of Friday, the state had confirmed 133 measles cases among residents since December.

Of the people who got sick and for whom the state could determine vaccination status, 57 people hadn't been vaccinated against measles and 20 people had had at least one shot of the vaccine.

Researchers analyzed the California outbreak data as well as information gleaned from news reports and the Internet to figure out how big a factor the lack of vaccination was. The short answer, as you might have guessed, is big.

"The rate of growth [in cases] gives us a good idea about the percentage of people in the population who are immune," says Maimuna Majumder, research fellow in the Health Map Computational Epidemiology Group at Boston Children's Hospital.

"This preliminary analysis indicates that substandard vaccination compliance is likely to blame for the 2015 measles outbreak," she and her co-authors wrote in a research letter that was published online Monday by JAMA Pediatrics. By their calculations, vaccination rates among the people exposed to the infection might have been as low as 50 percent and probably not more than 86 percent.

Shots - Health News Rise In Measles Cases Marks A 'Wake-Up Call' For U.S.

The rapid spread of the measles in California and beyond has put a spotlight on vaccination rates.

Widespread vaccination led the U.S. to declare measles eliminated from the country in 2000. Infected people have entered the U.S. from countries where measles is endemic and isolated outbreaks have sprung up periodically.

A resurgence of measles in the past two years has stoked public health concerns. In late January, the Centers for Disease Control and Prevention's Dr. Anne Schuchat said the uptick in measles cases "is a wake-up call to make sure measles doesn't get a foothold back in our country."

Measles is one of the most contagious viruses on the planet. But the measles-mumps-rubella vaccine against it is highly effective — about 95 percent effective in preventing infection.

When enough people are in a community are vaccinated against measles or have been previously infected with the virus, there's a protective effect called herd immunity that interrupts the spread of the virus to vulnerable people.

Shots - Health News A Boy Who Had Cancer Faces Measles Risk From The Unvaccinated

But the vaccination rate in the community has to be very high to guard against measles — 96 percent or greater.

"Measles is one of those cases of how herd immunity is really for the common good," Boston Children's Hospital's Majumder tells Shots. "Healthy kids don't die from it."

But children with weakened immune systems can die, and they rely on others to break the chain of measles transmission. Majumder's conclusion: "If you can vaccinate, do."

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

A Man's Incomplete Brain Reveals Cerebellum's Role In Thought And Emotion

Mon, 03/16/2015 - 3:08am
A Man's Incomplete Brain Reveals Cerebellum's Role In Thought And Emotion March 16, 2015 3:08 AM ET Listen to the Story 6 min 49 sec  

Jonathan Keleher is one of a handful of people who have lived their entire lives without a cerebellum.

Ellen Webber for NPR

Since his birth 33 years ago, Jonathan Keleher has been living without a cerebellum, a structure that usually contains about half the brain's neurons.

This exceedingly rare condition has left Jonathan with a distinctive way of speaking and a walk that is slightly awkward. He also lacks the balance to ride a bicycle.

But all that hasn't kept him from living on his own, holding down an office job and charming pretty much every person he meets.

"I've always been more into people than anything else," Jonathan tells me when I meet him at his parents' house in Concord, Mass., a suburb of Boston. "Why read a book or why do anything when you can be social and talk to people?"

Jonathan's Brain Scans

These are brain MRI scans of Jon Keleher (A,B) compared to a control person (C,D) of the same age.

Source: Massachusetts General Hospital

Credit: Courtesy of Jeremy Schmahmann

Jonathan is also making an important contribution to neuroscience. By allowing scientists to study him and his brain, he is helping to change some long-held misconceptions about what the cerebellum does. And that, in turn, could help the hundreds of thousands of people whose cerebellums have been damaged by a stroke, infection or disease.

For decades, the cerebellum has been the "Rodney Dangerfield of the brain," says Dr. Jeremy Schmahmann, a professor of neurology at Harvard and Massachusetts General Hospital. It gets no respect because most scientists only know about its role in balance and fine motor control.

You can learn a lot about that role by watching someone who's been pulled over for drunken driving, Schmahmann says. "The state trooper test is a test of cerebellar function. So the effect of alcohol on cerebellar function is identified by everybody who's ever done walking a straight line or touching their finger to the nose."

But Schmahmann and a small group of other scientists have spent decades building a case that the cerebellum does a lot more than let people pass a sobriety test.

First, they showed that it has connections to brain areas that perform higher functions, like using language, reading maps and planning. Then, a few years ago, researchers began to do functional MRI studies that suggested that the cerebellum was actively involved in these tasks.

Shots - Health News Blind From Birth, But Able To Use Sound To 'See' Faces

"The big surprise from functional imaging was that when you do these language tasks and spatial tasks and thinking tasks, lo and behold the cerebellum lit up," Schmahmann says.

Some of the most compelling evidence, though, has come from research on a handful of people who have no cerebellum, people like Jonathan Keleher.

For the first few years, his future looked highly uncertain, says his mother, Catherine. "All his milestones were late: sitting up, walking, talking."

But during that time doctors and developmental health experts still didn't know why Jonathan was having so much trouble. And that turned out to be a good thing, says his father, Richard. "Not knowing what the diagnosis was we said, 'Well, let's assume he can do everything,' " he says.

Keleher leaves a reminder note on his desk at the Institute for Community Inclusion, where he works.

Ellen Webber for NPR

So Jonathan got special education, speech therapy and physical therapy. His father even came up with a sort of beach therapy.

"He wasn't walking," Richard says. "And I found that if I took him to the beach, he would try to walk."

Jonathan was 5 when a brain scan finally revealed the problem. And eventually he was referred to Schmahmann, who has spent his entire career studying the cerebellum.

Shots - Health News Orphans' Lonely Beginnings Reveal How Parents Shape A Child's Brain Shots - Health News Leaky Blood Vessels In The Brain May Lead To Alzheimer's

An image of Jonathan's brain is on a computer screen the day I visit Schmahmann's lab. He points to an area just above the brain stem. "He has this remarkable black space down here, which is where the cerebellum is supposed to be," Schmahmann says. "It's a very big area of nothingness there."

Research on Jonathan and people like him supports the idea that the cerebellum really has just one job: It takes clumsy actions or functions and makes them more refined. "It doesn't make things. It makes things better," Schmahmann says.

That's pretty straightforward when it comes to movement. The brain's motor cortex tells your legs to start walking. The cerebellum keeps your stride smooth and steady and balanced.

"What we now understand is what that cerebellum is doing to movement, it's also doing to intellect and personality and emotional processing," Schmahmann says.

Unless you don't have a cerebellum. Then, Schmahmann says, a person's thinking and emotions can become as clumsy as their movements.

Jonathan got a reminder of this at a busy intersection soon after he got his driver's license. There was a bus behind him, cars whizzing by, and his brain simply couldn't coordinate all the information. So he totaled his father's car.

"Reaction time, not my strong suit," Jonathan says, adding that he doesn't drive anymore.

Emotional complexity is another challenge for Jonathan, says his sister, Sarah Napoline. She says her brother is a great listener, but isn't introspective.

"He doesn't really get into this deeper level of conversation that builds strong relationships, things that would be the foundation for a romantic relationship or deep enduring friendships," she says. Jonathan, who is sitting beside her, says he agrees.

Jonathan also needed to be taught a lot of things that people with a cerebellum learn automatically, Sarah says: how to speak clearly, how to behave in social situations and how to show emotion.

Yet Jonathan is now able to do all of those things. He's done it by training other areas of his brain to do the jobs usually done by the cerebellum, Schmahmann says.

It's taken decades, Richard says. He adds that it couldn't have happened at all if his son were less resilient and determined.

"There are times when I realize how brave my son has been," he says. "Being out there on his own, going down to the beach and falling down again and again and again and again. It's pretty impressive."

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