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A Doctor Wrestles With Whether To Keep Wearing His White Coat

Sat, 11/21/2015 - 7:03am
Lorenzo Gritti for NPR

I remember being handed a white coat during my first year of medical school. It came crisply folded in a cellophane bag. I was told to wear it anytime we were in the hospital or with patients as a sign of respect.

There was no pomp about it. I took it home and tried it on. It was like putting on a costume and pretending to play doctor. The white coat continued to feel that way to me for a long time.

Over the years, the costume has become second nature and part of my clinical identity. I slip it on when I'm seeing patients, because when I've asked, most of them tell me they prefer it. The coat provides a mutual comfort to us both.

My, how times have changed. Now the vast majority of the nation's medical schools (along with more than 700 nursing schools and physician assistant programs) host special white coat ceremonies, in which new students are welcomed into their profession with a solemn ceremony invoking commitment to the healing arts. White coats are formally offered to students, and put on them by their school's leadership.

These ceremonies present an opportunity for the students and their families to mark the beginning of health careers in an educational and professional crucible that will challenge their ideals, empathy and compassion. "The iconography, the ritual of holding up members of the profession in this time of change must be maintained," says Dr. Richard Levin, president and CEO of the Arnold P. Gold Foundation, whose mission is to promote and maintain humanism in health care.

Now in the role of medical educator myself, I find anything that helps students stay connected with their highest ideals valuable in imparting a sense of professionalism. That's why it's disconcerting to think that our white coats are being challenged as possible vectors of infection.

A group of doctors in the field of infectious diseases has begun to rally around a mantra of "bare below the elbows," suggesting that health professionals avoid wearing white coats altogether, as is the custom in the U.K.

It turns out we don't wash the things nearly enough.

In a piece titled "It's Time for Doctors to Hang up their White Coats for Good," Boston-based infectious diseases specialist Philip Lederer argues that white coats have outlived their usefulness, both as guardians of cleanliness and as symbols of the profession.

Studies demonstrate the presence of harmful bacteria on our white coats, though evidence of direct harm to patients is lacking.

"We don't need a randomized trial to prove that parachutes save lives," Lederer told me. He prefers wearing khakis and dress shirts with the sleeves rolled up; no tie. He mentioned other docs who favor vests for their pockets and warmth, a trend some hope will catch on. And while Lederer supports the idea of a humanism-themed ceremony to welcome students into the profession, he and others suggest that even as a symbol white coats are more of a barrier than a conduit to strong doctor-patient relationships.

Levin counters that with all of the changes in health care, people in the field feel a tremendous sense of dislocation. "The idea of taking away [professional status] rather than elevating it is a problem for health care," he said. But taking away the coats wouldn't necessarily be a blow, he said, pointing to a study that challenges the notion that white coats are fundamentally elitist.

The debate over white coats has forced me to consider my own practice. In the end, I think the issue is as much about generational change as it is about infection control. I'd give up my white coat instantly if I knew it was spreading harmful bacteria. But colonization with bacteria is different from transmitting them to another person.

Bacteria live on all of us, so are white coats necessarily worse than our other garments or even our own skin?

It's likely that this debate will continue, unless patients were to somehow come to consensus on what they want doctors to wear. And that's not likely to happen anytime soon.

Until then, I vow to wash my white coat more frequently.

John Henning Schumann is a writer and doctor in Tulsa, Okla. He serves as president of the University of Oklahoma, Tulsa. He also hosts Public Radio Tulsa's Medical Matters. He's on Twitter: @GlassHospital

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When Drug Treatment For Narcotic Addiction Never Ends

Fri, 11/20/2015 - 4:10pm
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Addiction counselor John Fisher says prescriptions for medicines to help people wean themselves from opioid drugs are part of the appeal of the clinic he operates in Blountville, Tenn.

Blake Farmer/NPR

Opioids have a stranglehold on parts of the U.S. And where addictive pain medicines are the drug of choice, clinics for addiction treatment often follow.

Sometime these are doctor's offices where patients can get painkiller-replacement drugs, such as Subutex and Suboxone.

These medicines, brand-name forms of buprenorphine, can ease withdrawal symptoms and cravings for opiates. They can be prescribed in an office setting, unlike methadone. And the drugs, also mild narcotics, can block the pleasurable effects of opioids if people fall off the wagon and take them, which can help reduce relapses.

"I use the medication as fishing bait," says John Fisher, a self-taught counselor who runs Addiction Recovery Center of East Tennessee in rural Blountville. The sign out front says the clinic specializes in "addictionology."

"We bring them in and try to taper them over time," Fisher says, adding that no one comes truly seeking treatment. They're looking for legal access to drugs. "One hundred percent of them are," he says. "No one comes to sit in a group and hear the 'Kumbaya' story. So that's fine."

Fisher's clinic has arrangements with two doctors who are able to prescribe buprenorphine to the patients. The treatment center isn't licensed like a typical outpatient rehab facility. The physicians in charge say they haven't seen the need.

The clinic, located in a Civil War-era cabin on a winding highway in northeast Tennessee, has roughly 120 patients. They are charged $500 for five weeks — cash only. The office doesn't accept insurance, citing the burdens of red tape and the fact that few patients have coverage anyway.

Clinic participants must attend weekly group meetings with Fisher, who is a recovered addict himself. He says two decades on drugs were all the training he needed to do this work.

Clients are told to get off any other illegal drugs, such as heroin or methamphetamine. The clients are tested for drug use during treatment and can be dismissed from the program if they regularly show signs of using something other than what they were prescribed.

Some patients stick around clinics for years. This one has just a handful of stories in which addicts weaned themselves completely, says Dr. Mack Hicks, who writes many of the prescriptions.

"You get this relationship built with them where they're just really legit drug dealers in a sense, in my eyes," says Heather Williams of Johnson City, Tenn. She has been clean for 11 months, after going through a cold-turkey program at a licensed drug treatment facility. But she spent a year and a half and $300 a month at a clinic that wasn't licensed.

Ironically, buprenorphine itself can become a drug of abuse. And the medicine has street value. To pay for treatments, Williams says many people sell half their buprenorphine pills to get the money for the next doctor's visit.

She's skeptical about the motives at some of the clinics. "The relationship that I had with my doctor, it's just really a money racket for some of them," Williams says. "I think somewhere they might have started out caring about your well-being and whether you're getting better or not. But he would go on vacation numerous times and show us pictures of him being in the Caribbean Islands, and I'm sitting there thinking the whole time, 'I'm helping fund this.' "

The local district attorney wants these kinds of operations reined in, but there's not much he can do without changing state law.

Suboxone is an opioid-replacement drug that can reduce cravings and symptoms of withdrawal.

Brian Snyder/Reuters/Landov

And the need for treatment is growing. "If someone wanted to shut them all down — all the Suboxone clinics ... what do you think that would do in terms of all the people that are addicted? You know that's not going to cure the problem," Hicks says.

Hicks is a former pain pill user, too. He got clean in the mid-'90s by going to an expensive inpatient treatment program that stepped him down off drugs in just a matter of days, though counseling continued for months.

Most people in this part of Appalachia can't afford to take that much time off from work and get that kind of care, though Hicks says that approach would be ideal.

"They've got to keep working some way," Hicks says. "The only way to do that is by giving them a substitute like we do."

Drug-replacement therapy is a standard course of treatment for people hooked on opioids.

But getting on Subutex or a similar drug isn't a silver bullet for pregnant women trying to minimize the drug dependency of their unborn child.

In Tennessee, which has seen a spike in births of drug-dependent babies in recent years, nearly three-quarters of all cases this year involved a woman who had a legal prescription.

"The babies withdraw just like an adult would," says Tiffany Hall of Jonesborough, who gave birth to drug-dependent twins this year.

Hall was a nurse who worked in the neonatal intensive care unit and took care of babies with neonatal abstinence syndrome, the technical name for drug withdrawals.

Hall knew better. But she had a drug problem herself. And the NICU is where her twins spent the first weeks of life this summer.

"You stand there and you watch your own child go through something you're not willing or wanting to go through yourself, and you have to stand there and watch that, knowing that you did that to them," she says. "It's awful."

Tennessee has a relatively new and controversial law that allows drug-using mothers to be prosecuted for giving birth to a drug-dependent child. But any mother who has a prescription for the drugs in her system is safe, no matter what kind of doctor prescribed the medication.

"I ended up going to a Subutex clinic, and I thought, I'm OK now. I have a legal prescription. If the babies withdraw, it's all right because it's legal," Hall says. "Still wasn't thinking about anybody but myself."

Hall got into a fully licensed program run by the nonprofit Families Free, which is focused on helping mothers kick their drug addiction. She's headed toward recovery and rebuilding her life, though she points out that there are less scrupulous clinics everywhere, including a stone's throw from the Families Free office in Johnson City.

But she accepts the temptation those clinics represent, since that's what every day will be like after treatment. "I like having it there," Hall says. "For me, it's accountability. Yes, it would be easy to go next door and come up with some kind of story to get whatever I may want, but I have to be able to hold myself accountable and say no. I'm done with that. I don't want to do that anymore."

This is the third and final story in a series that was produced by All Things Considered in collaboration with Nashville Public Radio reporter Blake Farmer.

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Mothers Who Lost Children To Addiction Unite To Change Laws

Fri, 11/20/2015 - 8:04am

Lafayette Square across from the White House is a popular spot for people with a political bone to pick. Next to the persistent "ban nuclear weapons" sign, protesters come here to picket in front of the president's home. On Wednesday, there's a group of women gathered behind a banner scrawled with messages, among them: "Remembering those who lost their lives to the war on drugs." "Keeping faith, hope, and love in our hearts."

Listen: on the scene with Moms United by the White House

Gretchen Burns-Bergman (center) speaks Wednesday at a rally in front of the White House about ending mass incarceration of drug users.

Angus Chen/NPR

This is Moms United to End the War on Drugs. Gretchen Burns-Bergman, 68, from San Diego, Calif., stands with three other women in front of the banner. She holds a microphone in one hand and signage in the other. "We're here to say, 'Ask Mom about the casualties of the drug war,' " she says into the loudspeaker. "The war on drugs is a war waged on families — our own families. We call for a focus on saving lives and ending mass incarceration."

Unlike Mothers Against Drunk Driving, Moms United is not a formal organization. Rather, it's cobbled together from several different small nonprofits and individuals based in 26 states and around the world — starting with Burns-Bergman's own organization, A New PATH (Parents for Addiction Treatment and Healing) based in Rancho Santa Fe, Calif. The Moms United campaign has been trying to push for two basic things: long-term support for recovering addicts and less stigma around drug use and addiction.

Her two sons are both recovering heroin addicts, and she says when her sons' lives were in danger, things changed for her. "You start thinking differently. The idea is you have to keep these young people alive so that they can find recovery. Dead people don't recover. That's the bottom line."

One of the women here, 62-year-old Denise Cullen from Orange County, Calif., says her son died because of the stigma associated with drug abuse. When her son, Jeff, tried to go on methadone to treat his heroin addiction, she wasn't supportive. She thought it was for people who had bad families. "He could be alive right now if he was on methadone or Suboxone [drugs used to treat opiate addiction]. My kid had what he called the fairy tale life, so it was like, why is he doing this?" Cullen says. "When I learned how wrong I was, it is really hard for me to know that he could be here and he's not."

Many of the women in Moms United to End the War on Drugs have been advocating for increased access to treatment options like methadone or naloxone, used to treat opiate overdoses, for years — sometimes decades. Now, they say that things are finally changing. President Obama recently increased funding for access to naloxone, and recently the Senate introduced a bill targeting addiction treatment and recovery.

Some of this change may have been helped along by the Mothers United campaign. Burns-Bergman says the group advocated for naloxone access laws and 911 Good Samaritan laws that passed in Florida and California, and they met this week with Michael Botticelli, director of the White House Office of National Drug Control Policy. They're gunning for the same sweeping, national success that Mothers Against Drunk Driving has had.

But the Moms United campaign isn't the multi-million-dollar entity that is Mothers Against Drunk Driving. They don't have the same lobbying power or the numbers or name recognition, even after five years of organizing. Part of that may be because of stigma, or because the policy solutions are a lot more complicated. What the campaign does have is a lot of conviction and camaraderie. The women joke and laugh and hug one another tightly.

On the sidewalk behind them, a group of teenagers take selfies with the White House. The Moms United loudspeaker booms out to a nearly empty street. These mothers don't seem to be bothered, though. They have each other, and they're going to keep pushing for what they want.

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Brand-Name Drugs Can Raise Costs Without Boosting Patient Satisfaction

Thu, 11/19/2015 - 2:13pm
Emily Martinez/ProPublica

In recent days, presidential candidates and even the American Medical Association have griped about rising drug prices, pointing to brand-name blockbusters with splashy ad campaigns.

When it comes to patient satisfaction, however, there isn't much difference between brands and generics, according to data collected by the website Iodine, which is building a repository of user reviews on drugs.

ProPublica has teamed up with Iodine, which launched last year, to add data from reviews to our Prescriber Checkup tool, which allows users to see their doctors' prescribing habits in the Medicare Part D program and compare them with others in the same specialty and state. Our drug pages (take, for example, the antipsychotic Abilify) will now include consumers' user reviews, usage statistics by state and a listing of the top prescribers in the country.

"What is it actually like to take these medications?" asked Thomas Goetz, Iodine's co-founder and chief executive. "That is the nub of what we're trying to measure...The fact that a drug is a brand drug or a generic drug, for us, is immaterial to the patient experience."

ProPublica compared the reviews of brands and generics in three drug categories: antipsychotic medications that treat schizophrenia, antidepressants, and drugs that lower cholesterol. Iodine asks people if a drug is worth it, whether it's a hassle to take and if it works well. For each category of drug, a generic scored best on each of the three questions.

Dr. Joseph Ross, an associate professor of medicine and a health policy researcher at Yale University School of Medicine, said he wasn't surprised that patient reviews of generic and brand-name medications were similar.

"Generic medications are manufactured to be equivalent in all ways (except appearances) to brand-name medications," he said in an email. "Unfortunately, many patients and physicians are convinced to spend more and use the brand-name medication by marketing initiatives, including advertisements on the television or drug coupons that promise similar out-of-pocket expenses for the higher-cost brand-name medications."

Consider antidepressants. Most drugs in the class, including Prozac, Celexa and Zoloft, are now available as generics and cost under $20 for 30 pills at Costco. By comparison, the brand-name drug Pristiq, manufactured by Pfizer, has a cash price of about $283 for 30 pills. (Those with insurance pay less, but probably still more than for a generic.) Pristiq fares worse in satisfaction than many of the cheaper alternatives.

Pfizer spokesman MacKay Jimeson said that depression manifests itself differently in different people, meaning treatment effectiveness may vary, too.

"Patients should work with their doctors to determine whether to use an antidepressant and, if so, which type of medication might be best for them," he said in an email. "Any treatment of depression or anxiety disorders, whether it's medication or otherwise, must be monitored carefully by a qualified health care professional."

A similar phenomenon plays out for cholesterol-lowering drugs, known as statins. Zocor and Lipitor are now available as generics and are inexpensive. The drug Crestor, made by AstraZeneca, continues to have patent protection and costs more than $230 for 30 pills at Costco. (Again, insurance discounts would lower that price.) Crestor's user satisfaction score was about the same as the generic alternatives.

AstraZeneca spokeswoman Michele Meixell said not all statins are alike. "The efficacy and safety of Crestor has been studied in more than 120 ongoing [or] completed trials and more than 67,000 patients worldwide over the past 13 years," she said in an e-mail. "Crestor is one of the two high intensity statins available and AstraZeneca believes it's a clinically important option for many patients, who are unable to reach their cholesterol goal with diet and exercise alone."

Both Pfizer and AstraZeneca noted that patients can receive discounts from the company.

Some drugs have many more Iodine reviews than others, which may affect the results. All told, Goetz said Iodine has reviews from more than 100,000 Americans covering the approximately 500 drugs in its database.

Goetz said he doesn't know why generics sometimes have higher satisfaction than brand-name drugs, but he offered one theory. "People might have outsize expectations for what a heavily marketed drug is going to do for them," he said. "They may watch the commercials and think that any given drug is going to be the answer to all their problems. And the reality of medicine and the reality of pharmacology is that every drug has some benefits for some people and some side effects for some people, and that's the whole balance."

Generics may have another advantage over newly launched drugs in the same class. By definition, a generic has been on the market a long time, so doctors know how it works, and any major problems or side effects would have already surfaced. By comparison, the studies that help brand-name drugs win approval may not have picked up safety problems or side effects that, while uncommon, can represent an issue once a medicine is taken widely.

Questions about cost and quality are likely to intensify. This week, the AMA called for a ban on direct-to-consumer advertising of drugs and medical devices. AMA board chair-elect Patrice A. Harris cited "concerns among physicians about the negative impact of commercially-driven promotions, and the role that marketing costs play in fueling escalating drug prices."

Ross, the Yale researcher, said eventually the costs of brand-name medications "will catch up with us, either in the form of higher out-of-pocket payments once the coupons run out or higher health insurance premium costs."

And, he added, "just because something is more expensive in health care does not mean it works better or is safer."

Charles Ornstein is a senior reporter at ProPublica, an independent nonprofit newsroom.

Copyright 2015 ProPublica. To see more, visit .
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Cancer Society Asks Regulators To Limit Insurers' Charges For Key Drugs

Thu, 11/19/2015 - 10:41am

Breast cancer drug Herceptin is one of the medicines that are typically covered by insurers but often at a high out-of-pocket cost for patients.

Jeff J Mitchell/Getty Images

Cancer patients shopping on federal and state insurance marketplaces often find it difficult to determine whether their drugs are covered and how much they will pay for them, the advocacy arm of the American Cancer Society says in a report that also calls on regulators to restrict how much insurers can charge patients for medications.

While the report found fairly broad coverage for prescription cancer medications, most insurance plans in the six states that were examined placed all or nearly all of the 22 medications studied into payment tiers that require the biggest out-of-pocket costs by patients, the American Cancer Society Cancer Action Network said. Those drugs include some well-known treatments, such as Gleevec for certain types of leukemia and Herceptin for breast cancer, and even some generics.

"That is new this year. We didn't see generic drugs placed on the highest tier in 2014," said Kirsten Sloan, the group's senior policy director.

Often, that tier means patients pay a percentage of the cost of the drugs, rather than a flat dollar amount, which is more common for drugs placed into lower cost-sharing categories. With many cancer drugs costing more than $5,000 a month, paying a percentage, also known as coinsurance, means patients must pay hundreds or even thousands of dollars at the pharmacy counter until they reach their annual insurance deductible.

This appears "not to be designed to encourage use of cheaper or more effective alternatives, but to extract the maximum patient cost sharing for cancer drugs," the report said.

The study called on the Department of Health and Human Services and state regulators to restrict insurers from charging policyholders a percentage of the cost of the prescription drugs, a proposal sure to face sharp opposition from insurers, who say it is one way to control overall spending and slow premium increases.

Clare Krusing, spokeswoman for America's Health Insurance Plans, said insurers pick up the majority of the cost of prescription medications in most cases, and the restrictions the advocates urge don't address what she says is the real problem. "The bigger issue here is the prices being charged by drugmakers for these medications and whether those are fair and reasonable," Krusing said.

But drugmakers have a very different perspective. They say insurance plans that lack transparency and shift more costs to consumers are the problem.

"What do drug prices have to do with patient access to information about coverage, formulary placement and cost sharing?" asked Allyson Funk, spokeswoman for Pharmaceutical Research and Manufacturers of America. "Insurers are increasingly singling out medicines for high cost sharing and restrictions on access compared to other more expensive health care services. On average, patients pay out of pocket nearly 20 percent of their total prescription drug costs compared to 5 percent of hospital care costs."

Meanwhile, in its report, the cancer advocacy group also questioned whether insurance plan designs that place a lot of cancer drugs into the highest cost-sharing tiers are discriminatory. Similar concerns have been raised by HIV/AIDS groups following reports that many plans place all or most HIV drugs — including generics — into high cost-sharing tiers.

Earlier this year, Avalere Health, a consulting firm, reported that some insurance plans sold on state and federal marketplaces place all drugs used for complex diseases like HIV, cancer and multiple sclerosis into those highest-cost tiers.

The study, released Wednesday, looked at the drug formularies for 66 silver-level plans available to consumers in California, Florida, Illinois, North Carolina, Texas and Washington. These plans cover about half of marketplace enrollees nationwide. The 22 drugs are just a sample of the total number of cancer drugs available, but they include several different classes of cancer treatments and both oral and intravenous treatments.

In other recommendations, the report said that federal and state marketplaces where consumers buy insurance should do a better job of providing direct links to drug formularies, which are the lists of medicines covered by a plan. Additionally, they need to ensure that information about patients' share of the cost of the drugs is accurately listed.

"Advocacy groups are telling consumers to be vigilant about picking a plan, but consumers then find they don't have all the tools they need," Sloan said.

Kaiser Health News is an editorially independent news service supported by the nonpartisan Kaiser Family Foundation.

Copyright 2015 Kaiser Health News. To see more, visit
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In Tennessee, Giving Birth To A Drug-Dependent Baby Can Be A Crime

Wed, 11/18/2015 - 3:22pm
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Jessica Roberts and her father, Alan Roberts, who has struggled with addiction himself. They are both clean and hope to break the cycle of addiction with the newest generation of their family.

Mallory Yu/NPR

In the United States, a baby is born dependent on opiates every 30 minutes. In Tennessee, the rate is three times the national average.

The drug withdrawal in newborns is called neonatal abstinence syndrome, or NAS, which can occur when women take opiates during their pregnancies.

In the spring of 2014, Tennessee passed a controversial law that would allow the mothers of NAS babies to be charged with a crime the state calls "fetal assault." Alabama and Wisconsin have prosecuted new mothers under similar laws, and now other states are also considering legislation.

Supporters of the laws say they can provide wake-up calls to women dependent on drugs and encourage them to get help. The Tennessee law says that getting treatment for drug use is a valid defense against fetal assault charges. But critics say criminalizing the effects of a woman's drug dependence on her newborn child makes it less likely for her to seek help when it could do the most good.

The problem of NAS is growing nationwide. Nearly 6 in 1,000 babies born in the U.S. in 2012 were diagnosed with NAS, according to a study published in the Journal of Perinatology in August. That's nearly double the level seen in 2009.

In Tennessee, billboards on the side of highways declare, "Your baby's life shouldn't begin with detox," with an image of a newborn baby's foot attached to a medical monitor. The signs are strategically placed in areas with the biggest substance abuse problems, like Oak Ridge — a town surrounded by poor, rural communities in northeastern Tennessee.

On a drizzly Monday afternoon in Oak Ridge, a group of women sits in a circle in a low brick building. Some of these women have their babies — bouncing on their knees or rocking gently in car carriers. These women are all in recovery, and some are recently out of prison for fetal assault. The group is called Mothers and Infants Sober Together, or MIST, and provides outpatient treatment for mothers addicted to drugs.

Each woman takes her turn checking in with Michelle Jones, who runs the MIST program. The women talk about their challenges and triumphs, their cravings. One pregnant woman admits to feeling guilty for being on a medicine prescribed by her doctor to ease her cravings for opiates.

"Can I say something? Don't feel guilty," another woman pipes up, "because it's going to help you right now."

Jones sits in the circle with them, week after week, asking questions and prompting them to open up. It's not an easy task. Many of them were afraid to talk at first.

Avoiding Prenatal Care Out Of Fear

Brittany Crowe used to be one of those women. Now, she shares her story.

"I could have gone [to] a baby doctor at first, but I was scared because of the new law," Crowe tells the group. When she was pregnant with her youngest son, she was addicted to prescription drugs and knew that if she went to a doctor, a drug test would come back positive. So she stayed away. She had no prenatal care through her entire pregnancy. She was so afraid of going to jail and losing custody of her children that she considered giving birth at home.

Brittany Crowe just completed an addiction treatment program that helped her regain custody of her children. Here she holds Allan, who was born with neonatal abstinence syndrome, as her son James stands behind them.

Ari Shapiro/NPR

"I worry about that a lot now," she told us later. "I wonder how many babies are not known about because the mothers are afraid to get help, and then they're born at home and nobody ever knows about these babies. If they're going through withdrawal so bad, they're going to pass away."

Crowe finally went to the hospital 10 minutes before she gave birth. Her son was born with neonatal abstinence syndrome. The Department of Children's Services took him and her older children away and put them in foster care. Crowe enrolled in the MIST program to get clean.

Crowe's experience points to one reason medical professionals and social workers oppose the fetal assault law: They worry that the law will keep women from getting medical care. Dr. Jessica Young, an OB-GYN at Vanderbilt University who specializes in addiction during pregnancy, says the law has made her patients afraid.

"So now they're making decisions on medical care out of fear rather than out of science or what is best for them and their baby's health," she says. "Fear makes people make rash unsafe decisions without the consultation or guidance of a physician."

One mother details her journey with addiction in a group therapy session at Mothers and Infants Sober Together.

Mallory Yu/NPR

State Rep. Terri Lynn Weaver, a Republican who co-sponsored the bill, argues that critics misunderstand its intent.

"We want to get these women help," she says. They "weren't getting help — not going to prenatal care anyway. Their mindset is not on prenatal care. The mindset is on the next drug." She hopes the law can act as a wake-up call to addicted women that will motivate them to seek help.

Some of the mothers at MIST told us the law did scare them into getting help. When Jessica Roberts got pregnant, the law drove her to enroll in rehab twice, but it didn't make her quit. She relapsed both times, injecting herself with opiates.

"What finally broke me was, I was 31 weeks. I had tied off to hit myself. And I put my arm on my stomach. And [the baby] kicked my arm off. And that broke me," she says. "To me, it was like my baby saying 'Mom, you can't do this anymore. I need you.' And it hurt."

Treatment Slots Hard To Find

When Roberts wanted help quitting cold turkey, she had a hard time finding it. Not many rehab clinics will detox a pregnant woman, and the few that do have long waiting lists. Doctors disagree on whether detoxing a pregnant woman is really best for mothers and their babies. Instead, most physicians recommend a gradual tapering of less harmful medications like methadone, paired with a comprehensive addiction treatment program. Those programs are scarce, however, and often have long waiting lists of their own.

Young's clinic at Vanderbilt, for instance, has a waiting list of up to eight weeks, and the majority of her patients have to drive over an hour to see her.

At the state Department of Children's Services, Connie Gardner says it feels like Tennessee is "drowning in the drug problem," and nobody has thrown the state a life preserver. She understands why mothers view her office with distrust and fear. The department makes the decision about when babies should be taken from a mother and put into foster care.

"None of these mothers wakes up and says, 'I'm going to abuse my child today,' " Gardner says. "None of them wakes up and says, 'I'm going to be a bad mother.' What I have to remember is that they do. They can get better. What's frustrating, what's disappointing is that we don't have the tools to help them get better."

Even the law's advocates acknowledge that there isn't enough help for the women who want it. Barry Staubus, the district attorney for Sullivan County in the northeast corner of Tennessee, has prosecuted more than 20 drug-using mothers this year.

"Of course I'm for funding programs and making those programs available," he says. "There's always the call for more funding, but we can't let that get in the way of a good idea ... or an effective program."

Staubus believes that there need to be real consequences to women who chronically abuse powerful prescription drugs while pregnant. He says the threat of jail time would scare even the most defiant women, who had been previously unwilling to get into a program.

The Tennessee law is set to expire next year, unless state legislators renew it. So its effectiveness is under close scrutiny.

Births Of Addicted Babies Up In Nashville

At Vanderbilt Hospital's Neonatal Intensive Care Unit in Nashville, the persistent squealing cry of newborns going through drug withdrawal provides an audible reminder that this problem is far from solved. In the year and a half since this law took effect, the numbers of NAS babies have not gone down, says Dr. Stephen Patrick, who researches neonatal abstinence syndrome at the hospital. He saw 100 cases last year, and the hospital is on track to see at least that many this year. He doesn't think punishment is the right way to solve this problem.

NAS is a treatable condition in newborns, he says, and there isn't enough research to know what its long-term effects on a child might be. "There was a lot of concern about the cocaine epidemic and Time magazine calling it a 'lost generation.' I think we should be really cautious in how we frame this moving forward," he says. "The evidence really doesn't support that for neonatal abstinence syndrome. And, in fact, we know that other substances, legal substances such as alcohol, are far more harmful long-term to infants."

On a warm fall afternoon, Crowe and her children are at the park. Her older kids play in a stream as she holds her youngest on her hip. He's 9 months old, with big blue eyes and a tuft of blond hair.

One of her boys runs up to her, a mischievous smile on his face.

"Don't you splash me," she warns, but there's amusement in her voice.

He giggles and Mom gets a faceful of muddy water. She laughs as she wipes it from her eyes. He splashes her again.

Is she having second thoughts about having her children back?

"I think it's a little too late," she says, laughing. "I can honestly say a year ago I wouldn't have been here." She's grateful to be here now. Free of drugs, and finally reunited with her children.

This is the first story in a series that was produced by All Things Considered in collaboration with Nashville Public Radio reporter Blake Farmer.

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A Tiny Pill Monitors Vital Signs From Deep Inside The Body

Wed, 11/18/2015 - 2:54pm
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A group at MIT built this tiny package of sensors to collect vital signs as it travels through the digestive system.

Albert Swiston/MIT

After testing all the pieces of a tiny pill-size device, Albert Swiston sent it on a unique journey: through the guts of six live Yorkshire pigs.

Pig bodies are a lot like human bodies, and Swiston wanted to know whether the device would be able to monitor vital signs from inside a body. It did.

It's the latest in a small but growing group of devices that soldiers, athletes, astronauts and colonoscopy patients have gulped to collect information from odd recesses of the body. Swiston calls them "ingestibles."

Other, less complex devices are being used in humans to monitor core body temperature, to photograph innards and to keep track of prescription use. But each one of those can monitor only one measure at a time.

Diana Saville / PLoS ONE YouTube

Swiston's tiny package monitors three at once. It includes a microphone, a thermometer and a battery with a long enough life to pass from mouth to rectum of whatever large mammal it's traveling through.

As it moves, tugged by the same forces that take food through the digestive system, one component gathers temperature, while a miniature microphone acts as a stethoscope, transmitting a recording of the heart and lungs (which, Swiston says, sounds something like "lub dub lub dub lub dub wooooohooo") to a wireless device that translates it into heart rate and respiratory rate.

The device is described in a proof-of-concept study published Wednesday in the journal PLOS ONE.

Swiston, a biomaterials scientist, and his colleagues work at the federally funded Lincoln Laboratory at the Massachusetts Institute of Technology. The group focuses on developing technology that will help monitor soldiers in extreme climates like Iraq and Afghanistan, where heat-induced health problems can cause liver damage, kidney failure and death.

"Trauma patients are a really clear winner here, because we can do vital sign monitoring without touching the skin," says Swiston. "You can't put an [electrocardiogram] on a burn victim if they don't have any skin to apply it to. You need that information but you can't touch them." But swallowing a pill-size device would be no problem.

The technology could be used to triage patients in an emergency room, Swiston says, by offering continuous information on patients who may be suffering from heart problems, for example.

Athletes could use it to monitor their bodies without bulky or chafing external equipment.

Another view of the pill-size device developed by Albert Swiston and colleagues, the latest in a growing group of "ingestibles."

Albert Swiston/MIT

And the device might be used to help identify heart problems in people who might have irregular heart activity for only a few seconds of any given day. Right now, such patients have to wear a Holter monitor — which requires sacrificing showers and occasionally chest hair.

Earlier ingestible devices have primarily been able to monitor only one thing at a time. The FDA-approved PillCam has been used for years to take photos of people's gastrointestinal tract. A more recently developed device is meant to be attached to a pill, allowing a physician to monitor how closely a patient is taking prescriptions. The most common use has been core body temperature monitoring.

The field of ingestibles got its start in the 1980s, when NASA and the Johns Hopkins Applied Physics Laboratory teamed up to develop a "thermometer pill" to record the core body temperature of astronauts as they work in spacesuits. The suits seal off a person from the extreme range of temperatures in space (from 250 degrees Fahrenheit on the sunny side to -250 degrees on the deep space side) but present a risk of overheating from body heat and humidity trapped inside the suit. The device successfully transmitted a signal from astronauts' bowels to NASA computers on Earth. They've also been used to monitor astronauts' circadian rhythms based on small changes in their core body temperatures.

"They're a really great research tool," says Reed Hoyt, whose group at the U.S. Army Research Institute of Environmental Medicine worked to develop a digital version.

Since then, the thermometer pill has been used in multiple military studies. A few in Iraq and Afghanistan investigated the heat strain on Marine rifle squads working in full combat gear in the summer. "There was evidence of significant heat strain during missions in Iraq during very hot weather," he says. The data, he says, contributed to incremental but important tweaks in operations, like lighter clothing and more rest breaks.

Hoyt says the military has ditched the idea of using the thermometer pills to keep track of large numbers of people. It's expensive, he says. After all, each one is about $50 and not meant to be reused. "It's in one end and out the other," he says.

But the military still uses the thermometer pill in applied research, like on teams that work with chemical or biological threats. It feeds a signal to a sleeve display showing the person's heat level on a scale of 1 to 10. "That information allows them to keep track of each other right there, but the information is also relayed back to the command post where the commander and medic could decide when to bring them out to rest, rehydrate and cool off," Hoyt says. The thermometer pill also contributed to an algorithm Hoyt's research group developed to predict core temperature based on heart rate.

After two football players died of heatstroke in 2001, some sports teams caught on to the technology. A representative of CorTemp, one of several manufacturers of thermometer pills, says the devices have been used to keep NFL athletes from heatstroke and to protect firefighters and divers from reaching dangerous core temperatures. Researchers in California are using them to monitor farmworkers. Others have used them to study sleep disorders by watching how a person's core body temperature fluctuates over the course of a day or night.

Sandra Fowkes Godek, an exercise physiologist at West Chester University, started using ingestible core body thermometers to research football players in 2002. She now monitors the Philadelphia Eagles during their preseason, when players are at a higher risk of heatstroke because their bodies haven't had time to adjust to strenuous activity in full pads in the heat.

She says players who have had problems with heat before or who will play a lot in hot weather swallow the $30 devices about six hours before practice, to give it enough time to make its way into the intestine. "It can't be in the stomach because the temperature will fluctuate because of what you're drinking," she says. During practice, Fowkes Godek walks around with a recorder the size of a cigarette pack, checking players' core body temperatures by bringing the device within a foot or so of their bodies.

"You just walk up to them and put the recorder right behind them. Each sensor has its own serial number and you correlate that with the jersey number," she says.

Despite the fact that some players with unusually efficient digestive systems sometimes excrete the things before practice, Fowkes Godek says the devices have been important tools in preventing heatstroke in individual players and in understanding the human body's heat limitations.

"I'm not allowed to put subjects in [an experimental] chamber in full football gear and get their temperature up to 105," even though that happens on the field, she says. The data helped the sports community understand that dehydration isn't the only reason a person overheats. "For so long we were pushing fluids on athletes," she says, thinking dehydration was the main culprit. "It's the intensity of exercise and the environmental conditions — that's what determines body temperature," she says.

If used in humans, Swiston's device, which costs about $70 to manufacture at this point, would add another layer to the capabilities of the devices Hoyt and Fowkes Godek have used for years.

Right now, Swiston says, one of the biggest challenges keeping these devices from larger acceptance is "the ick factor." "We don't have a lot of acceptance that you can just swallow something," he says. "But eventually the ick factor will go away."

The truly hardy have already shed it. The devices are not meant to be reused, says Swiston, since that would require retrieving them from excrement. But, he says, some Marines "will wash it off with a little bit of Coca-Cola and then swallow it again."

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Is Sex Once A Week Enough For A Happy Relationship?

Wed, 11/18/2015 - 12:18pm

Was it good for you? Yes, as long as we're doing it at least once a week.


We live in a society where sex is often touted as the secret sauce that keeps a relationship tasty. So more sex must be better for you and your romantic partner, right?

Well, for established couples, having sex once a week hits the sweet spot for happiness and well-being, a study finds. This is either great news or tragic, depending on how you're feeling about your sex life.

It turns out that psychologists are working hard to figure out whether more sex makes us happier.

Researchers looked at data on 25,510 Americans, ages 18 to 89, about two-thirds of whom were either married or in a romantic relationship. For the people married or in relationships, more sex definitely correlated with more happiness. That wasn't statistically significant for the single people not in a relationship.

But when the researchers crunched the numbers to find out if there's an upper limit to improving well-being through sex, they found that the happiness maxed out at sex about once a week.

"This showed a linear association between sex and happiness up to a frequency of once a week, but at higher frequencies there is no longer an association," Amy Muise, a social psychologist at the University of Toronto Mississauga who led the research, said in an email. "Therefore it is not necessary, on average, for couples to aim to engage in sex as frequently as possible."

The results were published Wednesday in the journal Social Psychology and Personality Science.

OK, but the data come from U.S. surveys done in 1996 and 1998, years the researchers picked because those sets of data had information on both marital status and relationship status. Surely things have changed on the relationship front since the Clinton administration?

To answer that question, Muise and her colleagues also gathered data from a much smaller ethnically diverse group of people online. Those 355 participants also tended to be happier as frequency of sex increased. But the happiness leveled off with sex more than once a week.

To make it more interesting, the researchers also compared whether having more sex made people happier than having more money. It turned out that these people think having money would make them happier than having sex. But sex won out over money in that apparently magical once-a-week spot.

This suggests that John Updike was wrong when he wrote: "Sex is like money; only too much is enough."

Still skeptical? The researchers also used a third national data set that looked at happiness, sex and relationship satisfaction, and found that frequency of sex accounts for just 7 percent of the association between relationship satisfaction and happiness.

By now you may have thought, "Oh, it's different for men." But the researchers found that the once-a-week correlation held steady regardless of people's age, gender or length of relationship.

This suggests that Woody Allen was wrong when he wrote this immortal scene in Annie Hall:

Alvy's therapist: How often do you sleep together?

Annie's therapist: Do you have sex often?

Alvy: Hardly ever. Maybe three times a week.

Annie: Constantly. I'd say three times a week.

If you're still concerned about discrepancies between the findings and your own experience, don't fret. These studies merely find associations in large groups of people and can't prove a sexual cause for a given happiness effect.

Also, what emerges from the group doesn't trump your personal experience. You can go on doing what works for you and your honey. The take-home message, Muise says, is that it's "important to maintain a sexual connection with a romantic partner, but it is also important to have realistic expectations for one's sex life (given that many couples are busy with work and family responsibilities.)"

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For The Most Accurate Read, Where Should You Put That Thermometer?

Tue, 11/17/2015 - 1:42pm

Measuring skin temperature is less accurate than internal readings, a review finds.


To get the most accurate measurement of the body's temperature, a rectal thermometer works best, a study finds. Less invasive methods to measure body heat on the outside of the skin such as on the forehead or under the arms just aren't as precise.

Now does this mean everyone should rush out and restock their medicine cabinet with rectal thermometers? Probably not, says Dr. Daniel Niven, an intensive care physician with the Peter Lougheed Center in Calgary, who headed a review of the effectiveness of different types of thermometers. He says the oral thermometer and ear thermometer are reasonably accurate options.

Niven and colleagues analyzed data gathered from 75 studies from around the world, involving more than 8,600 patients, both adults and children. They wanted to know how the various types of thermometers compared. They looked at measurements taken in the armpit, mouth, ear and on the forehead, called peripheral thermometers.

They compared those measurements to each other and also to measurements from more invasive thermometers called central thermometers, like one placed inside the rectum or inside the bladder, used for hospitalized patients with catheters. The results were published Monday in Annals of Internal Medicine.

They found peripheral thermometers could be off as much as 1.5 degrees.

The more invasive measures were the gold standard, Niven says, enabling doctors to make diagnoses in patients without obvious symptoms. This is important because if a temperature measures as normal when it's not, then a serious infection could go undetected. This is especially critical in hospital intensive care units, he says, where "important opportunities to treat significant infections" may be overlooked.

Many ICUs rely on armpit measurements, he notes, not rectal or bladder measures. Niven hopes the findings of this study will encourage hospitals to rely more on central thermometers.

As for parents of children with more minor infectious illnesses such as a cough, runny nose or sore throat, thermometers measuring temperature in the mouth or ear provide a more accurate temperature reading than armpit or temple thermometers, the researchers found. Niven says that in these circumstances, people can generally rely on using these thermometers and need not resort to less comfortable thermometers, such as the often dreaded rectal thermometer.

Niven's study didn't include infants or toddlers, so he says he can't make recommendations for parents in taking temperature for this age group. But the American Academy of Pediatrics does recommend rectal thermometers as the most accurate for children under age 3.

Normal temperature is often thought of as 98.6 degrees, but there's a surprisingly wide range for normal. Between 97 and 99 is considered to be in the normal range of body temperature.

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Could Atropine Eyedrops Help Reduce Nearsightedness In Children?

Tue, 11/17/2015 - 11:45am

Atropine is a drug used to treat multiple eye disorders including nearsightedness and farsightedness.

Ryan Kellman/NPR

If you peek into classrooms around the world, a bunch of bespectacled kids peek back at you. In some countries such as China, as much as 80 percent of children are nearsighted. As those kids grow up, their eyesight gets worse, requiring stronger and thicker eyeglasses. But a diluted daily dose of an ancient drug might slow that process.

The drug is atropine, one of the toxins in deadly nightshade and jimsonweed. In the 19th and early 20th centuries, atropine was known as belladonna, and fancy Parisian ladies used it to dilate their pupils, since big pupils were considered alluring at the time. A few decades later, people started using atropine to treat amblyopia, or lazy eye, since it blurs the stronger eye's vision and forces the weaker eye to work harder.

As early as the 1990s, doctors had some evidence that atropine can slow the progression of nearsightedness. In some countries, notably in Asia, a 1 percent solution of atropine eyedrops is commonly prescribed to children with myopia. It's not entirely clear how atropine works. Because people become nearsighted when their eyeballs get too elongated, it's generally thought that atropine must be interfering with that unwanted growth.

But as Parisians discovered long ago, the drug can have some inconvenient side effects.

Because it dilates pupils and blurs vision, atropine makes it hard to see up close or to stand bright lights. "The children had difficulty reading. They would wear photochromatic glasses to shade against the glare," says Dr. Donald Tan, senior adviser at the Singapore National Eye Center. "We realized, yeah, atropine does work, but we've got to reduce the dose so we can reduce some of these side effects. Otherwise it will never be practical."

So Tan and a group of collaborators started testing out different doses of atropine on a group of 400 nearsighted children in Singapore. The participants took the eyedrops every day for two years. Since some patients' eyes will go into a growth spurt after going off the atropine, the researchers monitored the participants for a year off eyedrops. Patients whose nearsightedness rebounded during that year went back on the low-dose atropine for another year or two.

The children getting the lowest dose, eyedrops that were just 0.01 percent atropine, had the least worsening of nearsightedness compared with any other group after a five-year period. "We slowed the progression of myopia by 50 percent [in this group]," Tan says.

He and his colleagues have been researching atropine as a treatment for eye problems since the 1990s. Part of the reason this formulation did better, he says, is that these children's eyeballs had virtually no growth spurt after the initial two-year treatment period.

And the children on 0.01 percent atropine had almost no uncomfortable side effects from the eyedrops, the researchers reported Monday at the American Academy of Ophthalmology annual meeting in Las Vegas.

"That was a surprise. You'd think 0.01 percent would be completely worthless as a concentration, but it turned out to be slightly better." says Dr. David Epley, a pediatric ophthalmologist and a former president of the American Association for Pediatric Ophthalmology and Strabismus, who wasn't involved in the study. "The beauty of it was basically no kids had side effects."

That opens atropine back up as a practical treatment for myopia, Epley says. "This gives us a tool to slow down that progression of myopia that we didn't have in a safe way before."

Epley has been prescribing 0.01 percent atropine for some children in his own practice. He says he recommends it for children whose eyesight is rapidly getting worse and need new eyeglasses every few months, but not for patients who have only mild vision impairment.

If low-dose atropine can be made available to more people around the world, then that's likely to reduce the number of people at risk for developing a retinal detachment or retinal degeneration because of extreme nearsightedness. That's more important now, since the prevalence of nearsightedness has been increasing dramatically over the years, Epley says. About 40 percent of people in the U.S. are nearsighted, up from 25 percent in the 1970s.

But making the drug available to a lot of people might not be so easy. Right now, only eyedrops with 1 percent atropine are commercially available in the United States, though 0.01 percent is available in places like Hong Kong, where myopia is especially common. To get the diluted version, families and physicians in other locales need to get a compounding pharmacy to create it, and the Food and Drug Administration has approved only the 1 percent solution so far.

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Prostate Screening Drops Sharply, And So Do Cancer Cases

Tue, 11/17/2015 - 11:01am
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Testing for prostate cancer has declined after a recommendation in 2012 said it shouldn't be routine.


One of the most intense debates in men's health has flared again: How often should men get screened for prostate cancer?

This debate has simmered since 2012, when the U.S. Preventive Services Task Force shocked many patients and doctors by recommending against routine prostate cancer screening.

Some doctors welcomed the change by the influential panel of experts, saying it would save many men from experiencing false alarms and potentially serious complications of unnecessary treatment.

Others feared the new recommendation would cause more men to die from prostate cancer because their tumors would not be found until the cancer had progressed.

But no one knew what would happen.

Two studies released Tuesday don't settle the issue, but they do shed light on the effect of the recommendation against screening: Both studies found a sharp drop in PSA testing, and one found a significant fall in the rate at which men are getting diagnosed with prostate cancer.

"The take-home message to me is that the American public actually did listen to the U.S. Preventive Services Task Force," says Dr. Otis Brawley, the chief medical officer at the American Cancer Society, which conducted one of the studies.

For years, doctors recommended that middle-age and older men routinely get the PSA test. The test is named after a protein called prostate-specific antigen, which prostate tumors produce. The level of the protein in the blood can indicate the presence of a tumor. It can also be high for other reasons, including a urinary tract infection.

But the task force concluded the testing caused unnecessary suffering and that there was insufficient evidence that annual PSA screening significantly reduced the death rate from prostate cancer. That's because many men get biopsies, surgery and radiation for tumors that never become life-threatening, the task force concluded. The treatment often leaves men impotent and incontinent. In rare cases, treatment can cause fatal complications.

In the latest research, published in JAMA, the Journal of the American Medical Association, the cancer society analyzed data from government registries and surveys that track cancer diagnoses and screening. The analysis found the percentage of men ages 50 and older who reported PSA screening in the previous year fell by 18 percent — from 38 percent of those men in 2010 to 31 percent in 2013.

The researchers also found the rate at which men were diagnosed with prostate cancer fell from 505 per 100,000 in 2010 to 416 in 2012. That means 33,519 fewer men were being diagnosed with prostate cancer each year, the researchers calculated.

A second team of researchers at the Brigham and Women's Hospital in Boston and the Henry Ford Health System in Detroit conducted a separate analysis that was published in the same issue of JAMA. That analysis found PSA screening dropped 16 percent — from 36 percent of men to 30 percent — during the same period.

The decline in screening is "very disturbing," says Vanderbilt University urologist David Penson, who wrote an editorial accompanying the papers. Penson fears that the drop in screening and diagnosis will lead to an increase in deaths from prostate cancer.

In 2015, more than 220,000 men are expected to be diagnosed with prostate cancer and more than 27,000 to die from it, according to the American Cancer Society. Prostate cancer is the most common cancer among men.

"Prostate cancer screening is certainly not perfect. But it doesn't mean we should throw the baby out with the bathwater," Penson says. "If your loved one died because there was no screening, that makes a big difference to you."

But others welcome the trend, saying it will save many men from unnecessary suffering.

It's been clear for many years that there's a "much greater chance that a PSA test would lead to preventable misery such as impotence or incontinence, compared to any chance of having one's life saved," says Dr. Howard Brody, a professor of medical humanities at the University of Texas Medical Branch in Galveston, wrote in an email.

Many experts say one key question is how the decision to screen or not screen is being made.

"I think it's a good thing if doctors and men are having a discussion so that the patient can truly make an informed decision," says the American Cancer Society's Brawley. "I think its a bad thing if the doctors are making a decision and not discussing it with the patient at all."

Doctors on both sides of the debate also agree it will take more time before anyone knows how the drop in screening and diagnoses will affect one obviously important outcome of this debate: What happens to the death rate from prostate cancer?

"I think for the most part the jury is still out," says Dr. Howard Parnes, a specialist in prostate cancer prevention at the National Cancer Institute who wasn't involved in the new research.

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Now There's A Health Plan That Zeros In On Diabetes Care

Tue, 11/17/2015 - 9:44am

People with diabetes who sign up for an Aetna insurance plan focused on diabetes care can get blood sugar meters and test strips free of charge.


Talk about targeted. Consumers scrolling through the health plan options on the insurance marketplaces in a few states this fall may come upon plans whose name — Leap Diabetes Plans — leaves no doubt about who should apply.

Offered by Aetna in four regions, the gold-level plans are tailored for the needs of people with diabetes. They feature $10 copays for the specialists diabetes patients need such as endocrinologists, ophthalmologists and podiatrists, and offer free blood sugar test strips, glucose monitors and other diabetic supplies. A care management program with online tools and coaching helps people manage their condition day-to-day.

The plans also offer financial incentives, including a $50 gift card for getting an A1C blood test twice a year to measure blood sugar and a $25 card for hooking up a glucometer or biometric tracker to the Aetna site.

"It was a good time to design a product that was a little more personalized, as opposed to generic," says Jeff Brown, vice president of consumer product, network and distribution at Aetna. "We saw diabetes as a compelling need, and a growing need."

Aetna is debuting the diabetes plans, effective next year, in four markets: Charlotte, N.C., Phoenix, Ariz., Northern Virginia and southeastern Pennsylvania. The coverage is part of a new Aetna line called leap plans, aimed at helping the insurer build its retail business. The company says the plans are simpler to use than traditional plans and will have more personal customer service.

It's unclear whether the diabetes plans are a good buy for people with diabetes. The cut rates for specialist visits only apply if they're related to diabetes care, not for other conditions someone may have.

Meanwhile, coverage for medications, which may cost consumers hundreds of dollars every month, is no different in the diabetes plans than in other gold plans.

In Arlington, Va., for example, the Aetna Innovation Health Leap Gold Diabetes plan with a $3,500 deductible for an individual has an estimated monthly sticker price of $379. Specialist visits not related to diabetes cost $100, preferred brand-name drugs $50 and the out-of-pocket maximum is $3,500.

Is that a better buy than the $371 Kaiser Permanente gold plan with a zero deductible and $6,350 out-of-pocket maximum, where all specialist visits are $40 and preferred brand-name drugs cost $30? That will depend on the individual. (Kaiser Health News, an independent service of the nonprofit Kaiser Family Foundation, isn't affiliated with the health insurance company Kaiser Permanente.)

"The American Diabetes Association encourages individuals with diabetes shopping for a health insurance plan to ask if the plan covers the diabetes supplies, services and particular medications they need and look at all costs including the premium, deductibles and copayments or coinsurance in deciding what plan has the most favorable coverage," ADA spokesman Samantha Boyd said in an email.

Premiums for the diabetes plans generally fall in the middle range of gold plans in an area, except in Phoenix, where they're among the most expensive of the 20 plans available.

Gold plans pay 80 percent of medical expenses, on average, and the consumer pays 20 percent. Silver plans, the most popular plans on the marketplaces, pay 70 percent of medical bills. Most people receive subsidies that help reduce their premiums, but since subsidies are tied to silver-level plans they don't have as much impact on gold plans.

People with diabetes are relatively expensive to insure. Per capita health care spending in 2013 on people with diabetes averaged $14,999, more than $10,000 higher than the $4,305 spent on people without diabetes, according to an analysis by the Health Care Cost Institute.

Brown says that in designing the plans they focused on helping people get better access to specialists.

"A big part of what we're trying to do is to lower the financial barriers for seeing their care team," he says, including primary care physicians and specialists.

Doesn't he worry that Aetna will lose money offering plans that try to attract people with higher-than-average medical costs? Brown says it's an experiment, and they don't expect to make a lot of money.

Aetna wants to create a "long-term value proposition" with people, Brown says. "We're not only hoping to have these people for 18 months."

And for the record, you don't have to have diabetes to sign up.

Kaiser Health News is an editorially independent news service supported by the nonpartisan Kaiser Family Foundation. Email questions: Michelle Andrews is on Twitter: @mandrews110

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A Genetic Map Hints At What Makes A Brain Human

Mon, 11/16/2015 - 3:11pm
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An image from the Allen Institute's Brain Explorer shows gene expression across the human brain.

Courtesy of Allen Institute For Brain Science

Patterns of gene expression in human and mouse brains suggest that cells known as glial cells may have helped us evolve brains that can acquire language and solve complex problems.

Scientists have been dissecting human brains for centuries. But nobody can explain precisely what allows people to use language, solve problems or tell jokes, says Ed Lein, an investigator at the Allen Institute for Brain Science in Seattle.

"Clearly we have a much bigger behavioral repertoire and cognitive abilities that are not seen in other animals," he says. "But it's really not clear what elements of the brain are responsible for these differences."

Research by Lein and others provides a hint though. The difference may involve brain cells known as glial cells, once dismissed as mere support cells for neurons, which send and receive electrical signals in the brain.

Lein and a team of researchers made that finding after studying which genes are expressed, or switched on, in different areas of the brain. The effort analyzed the expression of 20,000 genes in 132 structures in brains from six typical people.

Usually this sort of study is asking whether there are genetic differences among brains, Lein says.

"And we sort of flipped this question on its head and we asked instead, 'What's really common across all individuals and what elements of this seem to be unique to the human brain?' " he says.

It turned out the six brains had a lot in common.

"One of the big findings of the paper is that whereas there's a lot of very, very small variation, on the grand scale in the brain there's only a limited number of patterns," says Mike Hawrylycz, another Allen Institute investigator and lead author of the paper, which appears in Nature Neuroscience.

The team first identified 32 of the most common genetic expression patterns. And they found that the genes that were least likely to vary from person to person included those known to be associated with diseases such as epilepsy, autism, Parkinson's and Alzheimer's.

The expression patterns also revealed genes that haven't yet been linked to a brain disease, but are likely candidates.

Then the team compared expression patterns found in people with those found in mice. "And it turns out that the patterns which are typically most associated with some of these diseases are not really well recapitulated in the mouse," Hawrylycz says.

The discrepancy could help explain why brain drugs that work in mice often fail in people.

The comparison of mouse and human gene expression patterns also found a difference involving glial cells. "The patterns that are more related to the neurons, the sort of information carriers in the brain, tend to be better conserved across species," Lein says. "Those that are related to the support cells, the glial cells, are actually less conserved. This was somewhat of a surprise."

But not a complete surprise. For a long time scientists believed glial cells weren't involved in higher brain functions, like thought. In recent years, though, a number of studies have suggested that glial cells, and especially a star-shaped variant called an astrocyte, play an important role in learning and intelligence.

"We've spent a lot of years studying the function of glial cells using the mouse brain as a model system," says Ben Barres, a professor of neurobiology at Stanford School of Medicine. "And we've found, to our great surprise, that the glial cells are actually much more active in controlling neural circuits in the brain than people had generally thought."

Research from Barres' lab has already shown that astrocytes help determine when and where neurons make connections in the mouse brain. And the lab has begun studying astrocytes in the human brain.

But that's difficult. "It's actually very hard to get human brain material that's in sufficiently good condition to study," Barres says.

He says he's confident that scientists will eventually find out what makes the human brain different. But they may have to employ a new technique, he says, which uses stem cells to grow miniature human brains in the lab.

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Mother's Milk May Help Prevent Blindness In Preemies

Mon, 11/16/2015 - 12:03pm

Babies born prematurely are at risk of eye damage and, in severe cases, permanent blindness. Treatments can help. And human milk looks like it helps, too.


If Stevie Wonder had been born three decades later, we might never have gotten "Superstition" and "Isn't She Lovely" — but the musician might never have gone blind, either. Born premature, Wonder developed retinopathy of prematurity, an eye disease that afflicts more than half of babies born before 30 weeks of gestation.

Though treatments were developed in the 1980s, about 400 to 600 U.S. children and 50,000 children worldwide still go blind every year from the condition. Now a study suggests that number could be slashed by more than half if all those preemies received their mothers' milk.

"It makes sense that human milk can be protective against retinopathy of prematurity because we know it's protective against abnormal neurological outcomes in tiny babies," said Susan Landers, a neonatologist in Austin, Texas, and a member of the American Academy of Pediatrics Section on Breastfeeding Executive Committee. "Retinal tissue is just like neural tissue embryologically; it grows from the same immature cells."

The study, actually a combined analysis of five studies from 2001 through 2013, found that preemies receiving human milk from their mothers had 46 to 90 percent lower odds of retinopathy of prematurity (ROP), depending on how much milk they received and how severe the ROP was. The studies were observational, so they cannot show that breast milk directly caused the lower risk.

"This is a very provocative study, and it does open new questions in new areas for research, but I think it's too early to conclude that breast milk prevents ROP," said Michael Chiang, a professor of ophthalmology and medical informatics at Oregon Health & Science University's Casey Eye Institute who was not involved in the study. It was published online Monday in the journal Pediatrics.

Of the infants who develop ROP, most recover and develop well without treatment, but about 10 percent develop severe ROP, increasing their risk of blindness, Chiang said. About half of those infants need treatment, which will prevent blindness in 80 to 90 percent of them.

The new research analyzed the outcomes of 2,208 preterm infants based on whether they received exclusive human milk, any human milk, mainly human milk (more than 50 percent), exclusive formula, any formula or mainly formula. The study did not include donor milk, so all the milk was the mother's pumped or hand-expressed breast milk.

Infants who exclusively received breast milk had 89 percent reduced odds of severe ROP compared to infants who received any formula. Infants who received a mixture of breast milk and formula had roughly half the odds of developing severe ROP compared to infants exclusively receiving formula. The analysis included a very large older study that had found no reduced risk for ROP from breast milk, but most infants in that study received less than 20 percent breast milk.

"Despite including a negative study with large numbers, the results are still very, very significant," said Landers, who was not involved in the study. "That strengthens this study considerably."

Until the 1940s and 1950s, ROP did not exist because infants born prematurely rarely survived, Chiang said. As doctors learned to how to keep these tiny babies, usually little more than 3 pounds at birth, alive, they discovered that the blood vessels in their retinas would often start to grow out of control. If the abnormal growth continued, their retinas detached, causing blindness.

The first treatment developed in the 1980s was cryotherapy, which slowed blood vessel growth. Laser treatments later replaced cryotherapy and have remained the standard of care since. The newest treatment is bevacizumab, a drug made from humanized antibodies that slows the growth of new blood vessels.

The cause of ROP isn't entirely understood, but scientists believe oxidative stress can stimulate the abnormal growth of the blood vessels. Providing preemies with oxygen is often key to their survival, but that oxygen exposure might lead to ROP, according to Jianguo Zhou, a neonatologist in Shanghai, and lead author of the study.

The antioxidants in breast milk offer one possible way that breast milk could prevent ROP, Zhou explained in an email. But the preventive mechanism could be indirect as well.

"Breast milk, specifically maternal breast milk, has been shown to be associated with reduced risk of many severe complications of prematurity, including a severe gastrointestinal disease called necrotizing enterocolitis," said Tarah Colaizy, an associate professor of pediatrics and neonatology at the University of Iowa Carver College of Medicine. "It has also been shown to decrease the risk of potentially life-threatening blood infections, and there is some evidence that the severity of lung disease due to prematurity is reduced in infants fed maternal milk."

Infants without these complications may receive less oxygen therapy, thus lowering the incidence of ROP, Zhou pointed out. Among 2 million infants born before 32 weeks each year worldwide, Zhou estimates that a tenth of them could develop severe ROP.

"Theoretically, exclusive human milk feeding could potentially prevent 8 percent (160,000) very preterm infants from severe ROP globally," Zhou wrote. "That is an enormous influence and prevents thousands of preterm infants from blindness or visual impairment."

ROP is still rare in places with the poorest health infrastructure because very premature infants still do not survive, but in China, India, Latin America and Eastern Europe, the problem is growing as doctors keep the infants alive but lack the neonatology and ophthalmology expertise to screen for and treat ROP. Even in the US where treatment is more available, screening may not be.

"Especially in rural and medically underserved areas, there's not enough supply of ophthalmologists to do these exams," Chiang said. "It's a huge problem in the US and internationally."

But providing exclusive maternal milk to preemies is easier said than done, Landers said. The biggest barrier is adequate lactation support for mothers in the NICU as well as the psychological complexity of the issue for mothers themselves.

"It's a very stressful time, and expressing milk is the only thing that moms can do, so we put a lot of pressure on them," Landers said. Some mothers don't fare well under that pressure. The mothers need to start pumping within 12 hours of birth, as well as instruction in expressing milk and support and encouragement over the three or so months she will need to pump before her baby can breast-feed. "As hard as it is to get them started on pumping, it's harder still to keep them going," Landers said.

Even greater cultural obstacles exist among poor and African-American mothers, Landers said, but donor milk may not offer the same benefits, possibly because of its processing and storage needs.

"To give these mothers the best chance of providing milk, the health care system needs to provide them with professional help in the form of lactation consultants with specific expertise in preterm infant-mother pairs, the appropriate breast pumps and supplies to collect and store milk and assistance in transportation to get the milk to the NICU for the baby," Colaizy said. "For these extremely fragile infants, maternal breast milk is a potentially life-saving intervention, and we should do everything possible for mothers to help them provide it."

Tara Haelle is a freelance health and science writer based in Peoria, Ill. She's on Twitter: @tarahaelle

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In Caring For Sickest Babies, Doctors Now Tap Parents For Tough Calls

Mon, 11/16/2015 - 4:30am
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Kate Teague, a registered nurse at Lucile Packard Children's Hospital, in Palo Alto, Calif., holds a premature baby's hand.

Heidi de Marco/Kaiser Health News

Dr. William Benitz walks past the rows of clear plastic isolettes in the neonatal intensive care unit at Lucile Packard Children's Hospital at Stanford University.

There's little room to navigate — the space is jampacked with beeping machines and ventilators. The health team in the unit can care for as many as 70 fragile infants. One tiny, pink baby girl here today was born weighing 13 ounces.

"A can of Coke is 12 ounces. So imagine a baby who could almost curl up in a fetal position and fit inside a Coke can," says Benitz, the hospital's chief of neonatology.

He first came to Stanford 42 years ago as a medical student, and says the ability of doctors today to save babies this small feels like something of a miracle.

When Dr. William Benitz first came to Packard Children's neonatal intensive care unit in 1973, doctors relied on their own judgment in deciding how aggressively to treat a newborn's severe illness, he says. Often they didn't even notify parents until they had taken action.

Heidi de Marco/Kaiser Health News

But as far as medical technology has come, some of the sickest and most premature babies who pass through his NICU won't make it, Benitz says. Others will go on to have severe, lifelong disabilities. Only 30 percent of the babies born at 24 weeks of gestation, for example, survive without impairments.

One of the most difficult parts of Benitz's job is determining how much treatment to give babies like these, and figuring out when it's time to let them go. More and more, doctors like Benitz are looking to parents to help make these decisions, based on the parents' values and preferences.

The American Academy of Pediatrics recently advised that parents should be given wide latitude in deciding how aggressive doctors should be with treatment in cases where their child is at high risk of death or serious disability. In practice, this means parents willing to raise a child with severe disabilities might elect to pursue more aggressive care than parents who do not want to take on that risk.

That's a big change. When Benitz first started at Stanford in 1973, doctors were considered the absolute authorities in life-and-death decisions, he says. They consulted with colleagues and decided how much intensive care to give, based on what they thought was the likeliest outcome. Often these doctors didn't even tell the parents about the decision before taking action.

"It never occurred to anyone that that might be a reasonable conversation to have," Benitz says. "We were in unexplored territory."

As technology improved and doctors tried to save sicker babies, and some born even earlier in gestation, there were new decisions to make: Should the health team put the tiny child on a ventilator? Attempt heart surgery? Those interventions helped many infants survive. Others did not fare as well.

"A lot of them ended up with significant impairments," Benitz recalls. And doctors started to get pushback. "In the mid-80s we began to hear from families that maybe that wasn't consistent with their goals for their children."

Packard Children's Hospital social worker Jane Zimmerman, who works with Benitz, says many doctors back then were trying to protect parents.

"The rationale for it," she says, "was they didn't want parents to have to take on that lifelong responsibility at having felt they made a decision that resulted in their child's death."

But some parents were angry that doctors had stopped intensive care without consulting them. Others were furious that they had not been given the option to end treatment of babies who ended up with severe cognitive and physical disabilities. Some filed lawsuits accusing doctors of causing their children "wrongful death" or "wrongful life."

Such cases coincided with a larger movement in which adults fought for more say in their own medical care. By the mid-90s, parents in the NICU had become much more involved in decision-making for their babies.

The choices parents face are often heartbreaking. In May 2015, Chris and Karin Belluomini had a daughter they named Joy. She was born with Down syndrome, multiple heart defects and fluid around her lungs. From the very start, doctors at Packard gave them the option of providing just comfort care, treatments that would soothe their daughter and relieve any suffering, but weren't aimed at fixing her heart problems.

On one hand, the Belluominis, whose child was a patient of Benitz and Zimmerman, have strong faith in God and were more than willing to raise a child with disabilities, even severe ones.

On the other hand, they didn't want their daughter to suffer unnecessarily.

Their final decision was to have doctors do everything they could — up to a point.

"We let them know, if her heart stopped, we did not want her to be resuscitated," recalls Karin Belluomini. "We just wanted her to be comfortable."

Joy remained in the NICU for three difficult weeks. By the end, her blood oxygen levels were so low that the doctors said she could die at any time — possibly when her parents weren't there. That's when the Belluominis decided to remove life support, so that Joy could die peacefully in their arms, disconnected from the tubes and needles.

Both parents say it was difficult to even imagine not being a part of such decisions.

"As a parent, you just want to do everything and anything to protect your child," says Karin. "So to be able to really understand her condition and how it's affecting her, and to know that we did have a say in that, was extremely important."

"You kind of don't want that responsibility," adds Chris, "and would rather have someone say or do it for you. But in the end, I wouldn't want it to have been any other way."

Jenny Gold, a reporter with Kaiser Health News, wrote this story while participating in the California Health Journalism Fellowship, a program of USC's Annenberg School of Journalism.

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Say Yes To Down Dog: More Yoga Poses Are Safe During Pregnancy

Mon, 11/16/2015 - 4:29am
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Four pregnant women sit in lotus position.

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Lots of studies have looked at the health benefits of prenatal yoga for the mother to be. There's even some evidence that yoga can be potentially helpful in reducing complications in high-risk pregnancies.

But does yoga have any impact on the fetus?

"I wasn't able to find any evidence-based studies" to answer this question, says Dr. Rachael Polis, who practices gynecology at Kosair Children's Hospital in Louisville, Ky. So she and a group of collaborators decided to conduct their own study. Their findings have just been published in the journal Obstetrics & Gynecology.

They recruited 25 healthy pregnant women in their third trimesters. All the women in the study had uncomplicated pregnancies; no high blood pressure or gestational diabetes.

During one-on-one yoga classes, the women were guided through 26 poses — everything from standing poses, to twisting poses to stretching.

Child's pose

Chris Gahler/Jersey Shore University Medical Center/American College of Obstetricians and Gynecologists

"We found these postures were really well-tolerated by women in our study," says Polis, who conducted the research while she was a resident at Jersey Shore University Medical Center. "Women's vital signs, heart rates, blood pressure — these all remained normal."

In addition, there were no falls or injuries. And none of the women reported "decreased fetal movement, contractions, leakage or fluid, or vaginal bleeding in the 24-hour follow-up," according to the study manuscript.

And very important, the fetal heart rate during all 26 poses remained normal.

"Because we had them [the pregnant women] on continuous fetal monitoring, we could see that the fetal heart rate remained normal," says Polis.

During the study, the women avoided inversion poses such as handstand or headstand to reduce the risk of falls. And for obvious reasons they also avoided lying flat on their bellies.

But they did try poses that some yoga teachers have advised pregnant women to avoid. These include the downward-facing dog; the happy baby pose — that's a pose where you lie on your back and hold your toes like a baby; and the corpse pose, where you lie on your back. Pregnant women are often told to lie on their sides, not their backs, during the final stages of pregnancy.

Downward facing dog pose

Chris Gahler/Jersey Shore University Medical Center/American College of Obstetricians and Gynecologists

Polis says her study finds all of these four poses were well-tolerated.

So, the message here seems to be: Go for it!

"This is preliminary information, but I think it's exciting and reassuring to know there were no adverse changes for both mom or baby," Polis says.

There is one caveat. Polis says it's important that every woman check with her ob/gyn to make sure that there are no complications before hitting the yoga mat.

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Preventable Colon Cancer Deaths Cost The Economy $6.4 Billion

Fri, 11/13/2015 - 4:45pm

Almost 20 percent of the people in low-income communities who die of colon cancer could have been saved with early screening. And those premature deaths take a toll on communities that can least bear it.

Lower-income communities in the United States face $6.4 billion in lost wages and productivity because of premature deaths due to colon cancer, according to researchers at the Centers for Disease Control and Prevention.

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"It's tragic not only for the lives lost, but it's tragic for the communities," says Hannah Weir, a senior epidemiologist at CDC who led the study. "That's money that's not being diffused back into these already disadvantaged communities."

The researchers looked at colon cancer deaths from 2008 though 2012 for people between 50 and 74 years of age. They figured out the preventable deaths by comparing the death rates in high-income counties compared to those with lower incomes. The higher-income areas were defined as those in which at least 85 percent of the population had graduated from high school.

Colon cancer used to be more common in white people with higher incomes, but over the past few decades screening has reduced their risk to the point that African-Americans now have higher rates.

"We know that colorectal cancer screening saves lives, and we know that people in these communities are less likely to be screened for cancer, so it's detected at a later stage," Weir says. "They're more likely to die from cancer."

Screening options include fecal occult blood tests, which are not invasive, as well as sigmoidoscopy and colonoscopy.

The researchers came up with the $6.4 billion number by comparing the differences in potential years of life lost due to premature death: 194,927 years in lower-income communities compared to 128,812 in higher-income communities.

The data was presented Friday at the American Association For Cancer Research conference in Atlanta.

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An Ill Newborn, A Loving Family And A Litany Of Wrenching Choices

Fri, 11/13/2015 - 3:51pm
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Anne Shamiyeh says grace before a meal with her husband, Omar Shamiyeh, and their two daughters, Zara and Malia. Anne says faith played a strong role in helping the family deal with the death of Malia's twin brother, Kai, in 2013.

Heidi de Marco/KHN

Anne and Omar Shamiyeh first learned something was wrong with one of their twins during an ultrasound, when Anne was 18 weeks pregnant.

"The technician was, like, 'Well, there's no visualization of his stomach,' " says Anne. "And I was like, 'How does our baby have no stomach?' "

It turned out that the baby's esophagus was not connected to his stomach. He also had a heart defect. At the very least, he was likely to face surgeries and a long stay in intensive care. He might have lifelong disabilities.

This was only the start of an eight-month ordeal for the Shamiyeh family.

Decisions about how much care to offer very sick family members are always challenging. But they can be particularly wrenching for parents like the Shamiyehs, who face harrowing choices during what is supposed to be a wonderful time — the start of a life.

As doctors and families consider how far to push medical care, a chasm can open between the parents' hopes and what providers consider realistic.

For the Shamiyehs, the first major decision was whether to "selectively reduce," the clinical term for aborting one fetus in a multiple pregnancy. "Omar and I were very uncomfortable with that," Anne says. "We really wanted to see what he was going to be like, and what life had to offer."

That decision meant the twins, a boy and a girl, would likely be born prematurely. As it turned out, they were delivered by cesarean section at 30 weeks — about two months early — at UCSF Benioff Children's Hospital, in San Francisco.

The boy was named Kai, the girl Malia. Each weighed about 3 pounds. They were rushed immediately to the neonatal intensive care unit. That night Kai had his first surgery.

Malia went home after about five weeks. But Kai was far from ready. He was on a ventilator, had to be fed through a tube directly into his stomach and was still struggling to survive. Eventually, he was diagnosed with CHARGE syndrome — a rare genetic condition that can result in severe cognitive and physical disabilities.

Omar looks through Kai's photo book. The charges for the infant's six months of care in the neonatal intensive care unit totaled about $11 million, according to the family, though their insurer very likely negotiated a lower rate.

Heidi de Marco/KHN

About the time Malia went home, the doctors and nurses sat down with the Shamiyehs to discuss Kai's treatment. They needed to know whether the family wanted a tracheostomy — surgeons would insert a breathing tube directly into Kai's neck to ease passage of air into his lungs.

"It seemed awful," Anne recalls. "We were both really unhappy with that, but we understood it wasn't a choice. It was something we had to do."

But Dr. Liz Rogers, a UCSF neonatologist who cared for Kai, saw it as a significant decision.

"To be very honest," Rogers says, "for many, many of our families, the point of decision around a tracheostomy is a major, major time when families say, 'This has gone on for too long, and it's not what I want for him.' "

Anne had real hope for Kai's future, despite the pessimism of some doctors.

"I kept thinking, maybe that doctor's view of quality of life is different from mine. And maybe, for me, loving my child and having him feel love is enough," Anne says. "And it's OK if he can't talk. Maybe he'll wear a diaper until he's 5, and maybe he'll be in a wheelchair, but that's OK. Because he'll be alive, and he'll be my child."

Studies suggest that health care providers do tend to have a different view of quality of life than parents do. In Kai's case, many of his day-to-day caregivers — the nurses — felt Kai was suffering unnecessarily.

Deidre Miller, a registered nurse in the NICU, says she was one of just a handful of nurses willing to be part of his primary care team. It was clear to all of them, she says, that Kai wasn't going to make it. Miller says she felt comfortable caring for Kai, but faced pressure from other nurses.

"A lot of people thought, 'OK, well, let's just offer the Shamiyehs the opportunity to withdraw care today.' And, as a primary nurse, you knew that the Shamiyehs were never going to agree to that, and you knew that he had joy in his life," she recalls. "But you go into the break room, and everybody wants to talk about it, and everyone wants you to be the person to tell the Shamiyehs."

There's often a lag between when health care providers and parents sense a child isn't going to make it. In one study, for instance, oncologists realized that their young patients would not recover months before the parents recognized it.

"As easy as it is to say we knew Kai was going to die, and we knew he was going to have a difficult life — gosh, what if we had been wrong?" Miller says.

From Anne's and Omar's perspective, Kai had many happy moments. They visited every day, always with Malia in tow. He smiled, cooed and connected with them. But he wasn't getting better.

In May 2013, five months into Kai's stay in the NICU, the Shamiyehs and their doctors sat down to talk about whether they wanted to go forward with the heart surgery that had been on the calendar since his birth. It would have to be done if Kai was ever to leave the hospital.

The surgery wouldn't help, doctors explained, and Kai might die during the procedure. This time, Anne and Omar decided not to go forward.

"So that was the day we found out we wouldn't ever be bringing Kai home," Anne says.

Two weeks later, Kai developed an infection the doctors couldn't treat. On June 5, 2013, he died in his mother's arms.

There were real costs to Kai's long stay in the NICU. Based on billing statements, the Shamiyehs calculate that the charges for Kai's care added up to more than $11 million, though their insurer very likely negotiated a lower rate.

There were also consequences for Kai's twin sister, Malia, whose parents were mostly focused on her brother during her first six months of life. Born two months prematurely herself, she had physical and speech delays; although at age 3, she's already caught up.

Anne Shamiyeh at home with 3-year-old Malia. Twins Kai and Malia arrived roughly two months early. Each weighed around 3 pounds at birth, but Malia was able to go home after about five weeks in the NICU.

Heidi de Marco/KHN

Looking back, Omar says he wonders if they went too far. "It's really hard to think — for five months he was going through all this pain and all this stress," Omar says. "You wonder if you made the right decision in keeping it going, you know?"

But Anne, who is now studying to become a nurse in the NICU, says she does not regret giving their son the best possible chance at life.

She's at peace with both their decisions — to try to save Kai, and to let him go.

Jenny Gold is a reporter with Kaiser Health News and completed this story while participating in the California Health Journalism Fellowship, a program of USC's Annenberg School of Journalism.

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A Push In California To Train More Latino And Black Nurses

Fri, 11/13/2015 - 11:10am

Diana Venegas, a nursing student at Samuel Merritt University, in Oakland, Calif., takes a patient's blood pressure at a recent health fair at Allen Temple Baptist Church.

Adizah Eghan/KQED

Allen Temple Baptist Church is buzzing with chatter and upbeat music. On this warm Saturday morning in East Oakland, Calf., the church is hosting its annual holistic health fair.

Students from the nursing program at Oakland's Samuel Merritt University, are dressed in blue scrubs, hustling to give eye exams and check blood pressure.

A couple tables down, Samuel Merritt's chief diversity officer, Shirley Strong, hopes to talk with prospective students. The private university has one of the three biggest nursing programs in California, and is committed to reducing health disparities by recruiting more students of color.

"The work of diversity at Samuel Merritt involves recruiting faculty, staff and students of color particularly," Strong says, "especially "African-American/black and Latino/Hispanic students, because they're the ones underrepresented in our community."

Last May, Samuel Merritt University's nursing program graduated its second-largest class of African-American and Latino students — 10 African-Americans and 28 Latinos.

"What we'd like to do is train more [registered nurses] and more case managers and more nurse practitioners," Strong says. "People who are really in decision-making roles in hospitals."

Black And Latino Registered Nurses Needed

The majority of the state's registered nurses are white or Asian-American. While 39 percent of California's population is Latino, just 8 percent of the state's nurses are. Six percent of the state's population is black, but just 4 percent of nurses are.

"Clearly we are lacking African-American and Latina nurses," says David Hayes-Bautista, director of the Center for the Study of Latino Health and Culture at UCLA's medical school. Having nurses who more closely represent the state's diversity will "make for better patient care [and] better language communication," he says. Studies show that many Latinos in California lack access to preventive care, and African-Americans experience higher rates of heart disease and shorter life expectancy than whites.

Shanda Williams grew up in Oakland, where there's great need for health providers who understand the community, she says. Williams was inspired to become a nurse after noticing her grandmother's lack of candor at visits to the doctor.

Adizah Eghan/KQED

These disparities are what motivated Samuel Merritt grad Shanda Williams to become a registered nurse.

Williams grew up in Oakland, where there's a great need, she says, for providers who understand the community. She's seen this firsthand.

"I would go to the doctor's office with my grandmother," Williams says, "and she would basically lie to all of her doctors about everything that she was doing."

Williams says her grandmother told the doctor she was eating fruits and vegetables and cutting out fried foods. Williams knew that wasn't true.

"It sparked a conversation," she says. But her grandmother dismissed Williams' suggestion that she be more candid with her medical team. " 'They don't understand the way we eat," the older woman told her granddaughter. "This is part of my identity.' "

Williams says this moment stuck with her. The doctor had neglected some key questions.

"There was never really a time when her doctor would ask her ... 'Well, why do you eat that way?' or 'Can we find a compromise?' or anything like that," Williams says. "Those questions never came up."

Helping Others Achieve

Now Williams wants to extend what she's learned to others. She's a tutor in Samuel Merritt's academic success program, which is specifically geared toward Latino and African-American nursing students. Today she's working with junior Leslie Hernandez. The two sit in one of Samuel Merritt's basement classrooms, going over neuropharmacology.

Hernandez says she sees a lot of Latino classmates in nursing school, but it's not the same when she accompanies family members to the hospital, or when she's out working in the clinic as part of her schooling.

She well remembers the moment she realized the need for more Latino and Spanish-speaking health professionals. She was working in the psychiatric unit of a hospital. Doctors and nurses deemed a particular patient "noncompliant" because she didn't talk.

But Hernandez was able to communicate just fine with the patient — in Spanish.

"She was speaking in Spanish, and she felt like nobody could understand her," Hernandez recounts.

The patient told Hernandez that she had suicidal thoughts, and Hernandez was able to alert the doctor.

Addressing Barriers Faced by Low-Income Students

Competition for slots in California's public school nursing programs is especially fierce. It can be very hard to get all the classes you need to graduate in four years, and students of color, who may be more likely to have financial pressures to complete school quickly, are underrepresented.

Inadequate financial support is a barrier in other ways, too, Strong says. While lower-income students can take advantage of financial aid to cover tuition at either a public or private school, they are often derailed by other, unexpected expenses.

A sudden need for hundreds of dollars for a car repair or an emergency dental problem, for example, can force students to drop out, Strong says. Many come from families that lack the ready cash to help in an emergency.

To aid these students, Strong says Samuel Merritt is working to create a special fund, "so that when a student has a problem, we just write the check from the emergency fund." That way, he says, students can "stay attentive, and on course to graduate."

Strong says the best preparation for a career in health care starts in high school — or even sooner. "The key really is that they have to take science courses and the math courses early on, so when they get to college they are prepared to step into these various programs," she says.

Students who haven't taken those early preparatory classes spend a lot of time playing catch-up in college, and many find it just too overwhelming to tackle.

Samuel Merritt is partnering with pathway programs such as the Health Academy at Oakland Technical High School, and Berkeley Technology Academy. The goal is to give more students who are interested in the health care field the preparation they need.

California's Board of Registered Nursing forecasts that Latino population growth in the state will continue to outpace the number of Latino registered nurses unless more effort is made to encourage enrollment and graduation of Latinos from RN programs.

While the number of African-American nurses is climbing faster, it's can't happen fast enough for Shanda Williams. She wants to open a clinic with some of her classmates.

"Working in my community is what also helped keep me motivated in school," she says; she thinks other students of color feel the same way, wanting to make positive changes in the towns and neighborhoods they grew up in.

Williams wants patients like her grandmother to seek care from people they trust, doctors and nurses who can say, "I'm from the same neighborhood you come from."

This story ran first on KQED's blog State of Health.

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To Prevent Addiction In Adults, Help Teens Learn How To Cope

Thu, 11/12/2015 - 3:56pm

Madison Square Boys & Girl Club, which operates four clubs in Brooklyn and the Bronx, reaches about 200 teenagers with an substance abuse prevention curriculum called Empowerment.

Robert Stolarik for NPR

Addiction is a pediatric disease," says Dr. John Knight, founder and director of the Center for Adolescent Substance Abuse Research at Boston Children's Hospital. "When adults entering addiction treatment are asked when they first began drinking or using drugs, the answer is almost always the same: They started when they were young — teenagers," said Knight.

Smoking, drinking and some forms of drug use among teens have declined in the U.S. in recent years, but an estimated 2.2 million adolescents — 8.8 percent of youth aged 12 to 17 years old — are currently using an illicit drug, according to a 2014 Behavioral Health Barometer prepared for the Substance Abuse and Mental Health Services Administration (SAMHSA).

Drug use changes brain development, and when substances are used during adolescence, young people are much more likely to become addicted, Knight said. "When people start using at younger ages, the changes in brain structure and function are very, very pronounced," he explained. "If we could only get kids to postpone their first drink or their first use of drugs, we could greatly diminish the prevalence of addiction in the U.S."

And in some places, teenagers may be using more, sooner. "In the last several years, it seems like the kids that we see in services are far sicker than in the past," said Sara Ellsworth, clinical supervisor at True North Student Assistance and Treatment Services in Olympia, Wash.

Last year, True North served nearly 700 students in 44 mostly rural school districts. Increasingly, she said, kids who come for help have a history of victimization or significant trauma, such as domestic violence, physical or sexual abuse, parental incarceration or substance abuse, rape or homicide. More than half also had at least one mental health disorder.

Despite some improvements in the national youth substance abuse numbers, Ellsworth has witnessed a disturbing new pattern: kids who start using alcohol or marijuana at ever younger ages as a form of self-medication, who quickly escalate to more dangerous drugs, and who wind up using multiple substances in extreme amounts. "Maybe the average kid is using less and doing better, but the kids who are falling through the cracks are spiraling down, really fast," she said.

About 10 percent of Americans will develop a substance-use disorder at some point in their lives and need therapeutic services, according to Rob Vincent, a SAMHSA public health analyst. But those services are hard to come by, especially for youth.

"Once a child 12 to 17 years old is identified as needing treatment, only 1 in 20 of those adolescents is actually getting treatment. That is not a good number," said Vincent.

Yolanda Roberson, who directs the Empowerment program, teaches a class at a Boys and Girls Club in the Bronx. The classes are funded by the state of New York.

Robert Stolarik for NPR

So public health officials and researchers are making the case for prevention instead. Dealing with drug and alcohol abuse after the fact is a costly, impractical approach, so public health officials and researchers are making the case for early detection and intervention instead.

The leading prevention strategy, dubbed SBIRT — Screening, Brief Intervention and Referral to Treatment — is deployed in schools, afterschool programs and most widely, in primary and public health care.

Most pediatricians routinely screen patients for substance problems during annual visits. That's a big change from just 20 years ago, when the American Academy of Pediatrics found that fewer than half of pediatricians reported they were screening adolescents for substance use. By 2013, that percentage had risen to more than 80 percent, according to Dr. Sharon Levy, director of the adolescent substance abuse program at Boston Children's Hospital.

"I interpret that as a real shift in culture, from one in which there was controversy over whether drug use was a legitimate topic for pediatricians to address to one in which it's now part of the standard of care," Levy said. She sees the pediatrician's office as an ideal place to discuss substance abuse. "It's a unique setting in which an adolescent gets to have a confidential conversation" with an adult who is not their parent.

Doctors use one of a variety of screening tools, including one, called CRAFFT, that was developed by Knight. It asks six questions, including: "Have you ever ridden in a car driven by someone (including yourself) who was "high" or had been using alcohol or drugs?"

In many doctors' offices, the survey is now computerized or given as a questionnaire before the medical visit, so doctor and patient can discuss the results. (You can take the CRAFFT screening test here; it's available in 13 languages, including Khmer and Haitian Creole.)

Other screening tools widely in use are called frequency-based screens. Those tools use multiple-choice questions which ask teenagers how often they have used alcohol or marijuana to predict their risk of developing an addiction.

If screening turns up troubling behavior, the second step is brief intervention. In the doctor's office, that could be a five-minute conversation with the two elements that Knight says comprise a good brief intervention: science and stories. "What they want from doctors is, 'Tell us what the science is, don't tell us what to do; give us the information and trust us to make the right decisions.' "

The intervener can also be a therapist, counselor or youth-development worker. They often use what's called "motivational interviewing." That's the approach used by Elizabeth D'Amico, a licensed clinical psychologist and senior behavioral scientist at RAND Corporation, who developed CHOICE, a voluntary afterschool prevention and intervention program in California.

"Motivational interviewing is about guiding someone to make a healthy choice," D'Amico said, "versus saying, 'Okay, you have a problem and you need to change.' "

Counselors have to acknowledge there are reasons why young people use alcohol or drugs, D'Amico said. "You lose all your credibility if you just say, 'It's bad for you, stop.' "

Instead, motivational interviewing is more collaborative, said D'Amico. For example, if a teen says he drinks to relax, the counselor can help him to think of other, healthier ways to relieve stress. Studies have found a modest benefit in the program, with some students delaying drinking.

The third step of a prevention strategy, referral to treatment, connects youth who need more care with specialty treatment. Levy said most teenagers with a drug or alcohol problem don't need a residential program, or even an intensive outpatient program. Instead, they'll do fine working one-on-one with a counselor, she said.

In Washington, Ellsworth at True North Student Assistance and Treatment Services says that students served by the prevention programming have done better. In the last academic year, students said their use of marijuana and cocaine declined by half after participating in the program, and alcohol use declined by one-third. Participants also had better grades and fewer behavior problems at school.

Students in the Empowerment program talk about myths surrounding substance abuse. The program emphasizes healthy lifestyles.

Robert Stolarik for NPR

Even the computerized CRAFFT screening, with a few minutes of counseling by a pediatrician, has been shown to deter substance use, according to a study led by Knight and published in the journal Pediatrics in 2002. "The intervention resulted in 40 percent less substance use three months after the visit, and 12 months later there was still 25 percent less use, without any reinforcement. That's pretty powerful," said Knight.

Prevention is a cost-effective proposition, according to the National Institute on Drug Abuse (NIDA), with every dollar invested in keeping kids off drugs saving from $4 in health-care costs to $7 in law enforcement and other criminal justice costs. According to NIDA, research-based prevention programs can significantly reduce early use of tobacco, alcohol and illicit drugs.

Yet according to Knight, "of all the money that is spent by the federal government on the so-called war on drugs, only 5 percent goes to prevention." That's a short-sighted approach, he said. "The evidence is compelling that addiction is a pediatric disease, and if we don't prevent it during the teen years, we're really missing the boat."

Additional Information: Brothers and sisters

Hurt. Grief. Anger. Three sisters and one brother reflect on their dead siblings' drug addictions.

Elaine Korry writes about healthcare and social policy from the San Francisco Bay area. This story was produced by Youth Today, the national news source for youth-service professionals, including child welfare and juvenile justice, youth development and out-of-school-time programming.

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