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Doctors Unsure About How To Talk With Patients About End-Of-Life Care

Fri, 04/15/2016 - 10:54am

Talking about end-of-life care may be difficult, but the stakes make the conversations worth the effort.

Sam Edwards/Getty Images/Caiaimage

Doctors know it's important to talk with their patients about end-of-life care.

But they're finding it tough to start those conversations. When they do, they're not sure what to say, according to a national poll released Thursday.

Such discussions are becoming more important as baby boomers reach their golden years. By 2030, an estimated 72 million Americans will be 65 or over, nearly one-fifth of the U.S. population.

Medicare now reimburses doctors $86 to discuss end-of-life care in an office visit that covers topics such as hospice, living wills and do-not-resuscitate orders. Known as "advance care planning," the conversations can also be held in a hospital.

Payment for such discussions was initially included in the Affordable Care Act, but removed because of the controversy over so-called death panels. Medicare ultimately changed its policy, independently of Obamacare, to allow reimbursement for the end-of-life planning sessions.

The poll of 736 primary care doctors and specialists, including 202 in California, examined their views on advance care planning and end-of-life conversations with patients. Among the findings:

  • While 75 percent of doctors said Medicare reimbursement makes it more likely they'd have advance care planning discussions, only about 14 percent said they had actually billed Medicare for those visits.
  • Three quarters also believe it's their responsibility to initiate end-of-life conversations.
  • Fewer than one-third reported any formal training on end-of-life discussions with patients and their families.
  • More than half said they had not discussed end-of-life care with their own physicians.

The survey was commissioned by The John A. Hartford Foundation, the California Health Care Foundation and Cambia Health Foundation. (California Healthline is an editorially independent publication of the California Health Care Foundation.)

The general survey has a margin of sampling error of plus or minus 3.6 percentage points. For the internist/primary care provider sample, margin is plus or minus 4.5 percentage points. For specialists, plus or minus 6.0 points.

Patients and their families increasingly want to talk about end-of-life care with their physicians well before facing a terminal illness, studies have shown. Most also want to die at home rather than in a hospital, although cultural differences influence end-of-life preferences.

Policy analysts are urging more end-of-life conversations not just to accommodate patients' desires, but to save money on aggressive medical interventions that patients and their families don't want and that won't prolong life.

A recent study found nearly 40 percent of American patients dying with cancer received at least one chemotherapy treatment in the six months before they died, more than in six other countries studied. An average of about $18,500 was spent on U.S. hospital costs for patients in their last six months.

Nearly a quarter of the physicians in the national poll said that the electronic health records they're required to use don't have a place to include patients' end-of-life preferences. Even when electronic health records signaled that a patient had an advance care directive, nearly a third of doctors reported they couldn't access its actual contents.

And doctors who received their medical training years ago say they rarely focused on how to talk to patients about end-of-life care, although medical education is improving in that regard.

Physicians in large medical systems may find more support than those in private practice. At Kaiser Permanente in Northern California, physicians receive training in end-of-life discussions and have time to carry them out, said Dr. Ruma Kumar, the HMO's regional medical director of supportive care services.

Kaiser Permanente looks to nurse practitioners, registered nurses and social workers to work with patients on various stages of what the HMO calls "life care planning." The HMO also offers a website to guide people through the process.

Kumar said Kaiser encourages both doctors and patients to think of end-of-life planning "as a routine part of care, just like you'd get a mammogram or colon cancer screening."

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

Copyright 2016 Kaiser Health News. To see more, visit Kaiser Health News.
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Nurses Say Stress Interferes With Caring For Their Patients

Fri, 04/15/2016 - 5:00am
Oivind Hovland/Getty Images/Ikon Images

Jordin Purcell-Riess has worked as a registered nurse at the emergency department at St. Francis Hospital in Hartford, Conn., for three years. She describes her workplace as phones going off, voices everywhere, every room full. "You look around and the hallways are full of patients on stretchers; you walk out to the waiting room and you can see on our board that there's 15 people signing in," she says. "The second you can get your ICU patient upstairs, there's another one waiting for you."

She typically doesn't get a chance to eat or drink or go to the bathroom during her 12-hour shift, Purcell-Riess says. And she's not alone. Her nursing manager points out that a 2007 study in the American Journal of Respiratory and Critical Care Medicine found that 24 percent of ICU nurses and 14 percent of general nurses tested positive for symptoms of post-traumatic stress disorder.

Nursing has long been considered one of the most stressful professions, according to a review of research by the National Institute for Occupational Safety and Health at the Centers for Disease Control and Prevention in 2012. Nurses and researchers say it comes down to organizational problems in hospitals worldwide. That includes cuts in staffing; some California nurses struck last month for a week over low staffing and wages.

But some researchers say that just hiring more people won't fix things. Other proposed solutions include restructuring hospitals so that administrators pay more attention to what nurses have to say about patient care and work flow, and training programs to help nurses relieve their stress and deal with ethical dilemmas.

Injured Nurses Hospital To Nurses: Your Injuries Are Not Our Problem

Theresa Brown is a clinical nurse in Pittsburgh who has written two books about what it's like to be a nurse. She says nurses are often stretched to the limit.

"A friend said when she started working as a nurse, when she would drive, she would vomit on the way in to work just because of the incredible level of stress," Brown says.

"One of the senior nurses said there is no place we can go to just be alone and be in a quiet room for five or 10 minutes, except for the bathroom ... you could have a patient get really really sick, you could have a patient die, and there's no break," she says.

She adds that whenever hospitals start adding new forms of documentation or electronic health records, that work is often given to the nurses so their workload just gets larger. "It shouldn't be this way, but the patient demands are the ones that can get put off."

It's not just a problem in the U.S., either. A recent study in Hong Kong found nurses to be at much higher risk for stress, depression and anxiety compared to the general population. The Guardian reported last January that the number of nurses in the U.K. taking time off due to stress has soared — 1 in 29 are off because of stress. The problem is that most hospitals aren't organized to support nurses, or even doctors, says Linda Aiken. She is a professor of nursing and sociology at the University of Pennsylvania. "They're highly bureaucratic, they're very top-down organizations, they don't really seek out clinicians' solutions for solving problems in patient care," Aiken says. "Therefore the problems exist over decades, and they're basically not solvable by any individual nurse."

If the work environment at a particular hospital is bad, just adding more nurses won't address the problem, Aiken says. As an example of what hospitals can do, she points to magnet hospitals, a form of voluntary accreditation from a subsidiary of the American Nurses Association that looks at nursing culture, training and work practices, including issues such as not having a nurse lift patients alone, a significant cause of disability for nurses. There are about 400 certified magnet hospitals in the U.S.

Aiken says to get magnet status, hospitals need to give the nurses and doctors who are treating the patients a greater say in what resources are used for those patients, make decisions based on evidence, be well-staffed, and invest in educating their doctors and nurses. "That's not the conventional way that hospitals are managed now," she says.

Magnet hospitals with at least one nurse per bed are less likely to send patients to the ICU or have patients die, according to a study that Aiken co-authored that was published in January in JAMA Surgery. The improved results didn't cost the hospitals more; some actually saved money. St. Francis Hospital, where Jordin Purcell-Riess works, follows the magnet principles though it is not accredited.

Linda Aiken says she's worried that hospitals think of nurses as a cost to be cut and not as a revenue stream. Cynda Rushton, a professor of nursing and bioethics at the Johns Hopkins Berman Institute of Bioethics and School of Nursing, agrees. "There is a mindset among some administrators that nurses are easily replaceable commodities — a nurse is a nurse is a nurse," she says.

Almost 20 percent of newly registered nurses leave a hospital within the first year for the same job elsewhere, or a different job in a different organization, according to a 2014 study. Rushton says to her, that means health care organizations aren't investing enough in their nursing staff.

Nurse burnout also is linked to moral distress, Rushton says, from situations where nurses know what they should do for their patients but can't act on it. For example, nurses might have to give a patient at the end of life a treatment that causes suffering without any medical benefit. She just started a program called the Mindful Ethical Practice and Resilience Academy to try to help new nurses deal with moral distress.

It's a series of in-person workshops, some of which involve nurses using simulations to practice how to make their ethical concerns heard at work. One scenario includes a patient with a complex medical condition and a nurse has been caring for him and talking to him for days following the recommended treatment.

If the nurse sees that the medicine isn't working, she could say that she's assessed the patient's pain, it's a 10 out of 10, Rushton says. She could say she's concerned about the treatment because "in my role as a nurse, one of my primary goals is to relieve my patient's suffering and I'm not able to do that, so I'd like to talk about how we can figure out a way to more fully address this patient's pain and their suffering."

The goal is to help nurses better communicate with other staff members, Rushton says, as well as take care of themselves through mindfulness, reflection and other practices.

Nurses around the world are struggling with how to fulfill their ethical obligations, Rushton says. "In one sense, it could be considered a public health crisis, because if we don't have sufficient nurses to meet the needs of people in need of health care," the entire health care system could crumble. "I think that it's time that nurses are recognized as a scarce resource that needs to be invested in, supported and respected."

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

Copyright 2016 NPR. To see more, visit NPR.
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When Parasites Could Be The Treatment Instead Of The Illness

Thu, 04/14/2016 - 2:04pm

Could swallowing the eggs of a parasitic worm help treat a disease?

It might just work in some cases, according to the work of P'ng Loke and Ken Cadwell, two researchers at New York University who study parasites and the immune system.

Several years ago, Loke got an intriguing phone call from a man with inflammatory bowel disease. It's an extremely unpleasant illness. Symptoms include chronic painful abdominal cramps, diarrhea and fatigue.

The man told Loke that he had become so desperate that he had undergone a risky treatment in Thailand. It involved swallowing worm eggs and letting the worms, or helminths, hatch in his gut.

"When I heard what he had done, I thought he was crazy," says Loke. But it wasn't quite as crazy as it sounded at first. There had been previous work, including reports from the University of Iowa, that showed people got relief from doing this.

Mild infections with worms can go largely unnoticed. People with more serious infections can have bloody stools and other symptoms.

After hearing about the man's trip to Thailand, Loke and Cadwell decided to investigate.

Initially, they wanted to see if they could cure mice. To answer this question, scientists used specialized mice that mimic the human symptoms of Crohn's disease. These mice have damaged intestinal cells and lack most of the protective mucus that coats the intestine.

Loke and Caldwell suspected the helminths alter the bacterial population in the intestine. The intestine is a lot like a bustling metropolitan city, but populated with bacteria, not people.

Just like a city, some of the intestine's residents are helpful, and some harmful. The ratio of helpful to harmful bacteria plays a role in the development of many diseases, including Crohn's. The researchers wanted to see if feeding parasitic worm eggs to mice would decrease the number of bad bacteria that are associated with Crohn's and increase the numbers of helpful bacteria.

When the researchers fed the mice worm eggs, the population of good bacteria, called Clostridiales, shot up. In contrast the amount of bad bacteria, called Bacteroides, went down. The mice also had reduced inflammation in the gut, an increase in the helpful mucus-producing cells, as well as reduction in harmful intestinal abscesses. Loke and Cadwell published their findings Thursday in the journal Science.

Great for mice, but what about people?

The scientists weren't ready to start feeding worm eggs to sick people, so they tried an indirect research approach. They surveyed a small population in Malaysia, called the Orang Asli tribe. The Orang Asli experience virtually no inflammatory bowel diseases, and a high percentage of them have chronic parasitic worm infections.

Loke and Cadwell wanted to know: If we remove their worms, will we see an increase in harmful bacteria? The answer turned out to be yes.

Before the worms were removed, the tribe members had higher levels of helpful bacteria and lower levels of harmful bacteria. After taking a deworming drug, that healthy ratio was flipped. Cadwell and colleagues concluded that parasitic worms increase the population of beneficial bacteria in both humans and mice.

The specialized mice that the researchers use to study Crohn's have a deficiency in a protein called Nod2. Some Crohn's patients (about 25 to 30 percent) also have this deficiency.

But Cadwell doesn't recommend eating parasites to cure inflammatory bowel disease anytime soon. "Treating yourself with intestinal parasites is not necessarily safe," he says. "Our hopes are that we can use a treatment that mimics the body's immune response to the worms that will result in the same helpful change in the population of bacteria in the intestine" without the worms.

Copyright 2016 NPR. To see more, visit NPR.
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Zika Virus Can Be Transmitted Through Anal Sex, Too

Thu, 04/14/2016 - 1:08pm

In January, a man returned home to Dallas after a weeklong trip to Venezuela. Two days later he got a fever, a rash on his upper body and face, and pinkeye.

He was fine within three days. But about a week later, his partner developed similar symptoms — a rash, pinkeye and some joint pain in his hands and feet.

He went to the doctor's office, and a clever physician assistant thought of Zika virus.

The day before the traveler's symptoms set in, he had had anal sex with his partner. They'd been together for more than 10 years. They'd had sex again a day after the man recovered. The traveler hadn't noticed anything unusual about his urine or sperm, and the couple didn't use condoms.

Suspecting sexual transmission, the physician assistant collected samples of blood from both men, and later collected semen, urine and saliva as well. Though the virus itself was no longer conclusively detectable in either of the men's samples, a more thorough test showed that the man who had not traveled had been infected with Zika.

The test results did not clearly show whether the traveler had had Zika or a certain type of dengue virus or both. But the researchers were able to rule out that the man who did not travel could have gotten it from a mosquito — it was too cold in Dallas in January for Aedes aegypti larvae to survive, and traps laid around the couple's home only brought in a different species of mosquito not known to carry Zika.

"The second man had had a Zika virus infection and the only way he could have gotten it was from his sexual partner," says Dr. John Brooks, a medical epidemiologist with the Centers for Disease Control and Prevention and an author on the case report published Thursday by the CDC.

"We know that most STIs can be transmitted through anal sex and oral sex as well as vaginal sex," says Brooks. So the fact that Zika can, too, is not a surprise, he says.

The important thing, Brooks says, is that the finding is not just relevant to gay men.

"Anal sex is practiced not only by men who have sex with men, but also by heterosexual couples, and so it's important to consider not the person's sexual preference but the activity in which they're engaging," says Brooks. "A woman who has anal sex could become infected with Zika virus."

The big question now is how long the virus can last in the semen of an infected man, and therefore how long he might be capable of infecting someone else through sex. It's also unclear how likely it is that a man infected with Zika will shed it in his semen, and if that only happens with people who show symptoms of the virus. In the six reported cases, all the men with detectable virus in their semen had shown symptoms, but most people who get the Zika virus are asymptomatic.

During a previous outbreak, the virus was detected in the semen of one man two months after his fever had set in. In a more recent case, researchers found the virus in the semen of a French traveler two weeks after he'd been sick (there was a lot more virus in semen than there was in blood or urine, leading them to wonder if the virus can replicate in the male genital tract).

And a case was reported Wednesday in the New England Journal of Medicine of a woman in Paris who contracted Zika after having sex with a partner who had traveled to Brazil. Researchers isolated the virus from an infected man's semen 24 days after his symptoms started. The two had had oral sex as well as vaginal sex without ejaculation.

The authors write that the data "support the hypothesis of sexual transmission (either oral or vaginal)" of the Zika virus. "We cannot rule out the possibility that transmission occurred not through semen but through other biologic fluids, such as pre-ejaculate secretions or saliva exchanged through deep kissing," they write.

There is no evidence that vaginal secretions of an infected woman can contain Zika virus.

"We really owe a debt of gratitude to the two men who came forward as well as to the extraordinarily astute clinician," says the CDC's Brooks. "We really encourage clinicians and public health officials to report cases of suspected sexual transmission to their local health departments so we can get an idea of the biology of the cases."

Dr. Paul Mead, a CDC epidemiologist, says he's working with state and local public health labs to get in touch with U.S. travelers who have tested positive for Zika. He aims to enroll 250 men in a six-month trial to understand how long the virus persists in semen and urine. There's a similar trial in the works in Puerto Rico.

Copyright 2016 NPR. To see more, visit NPR.
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A Dearth Of Psychiatric Hospital Beds For California Patients In Crisis

Thu, 04/14/2016 - 10:51am

When Amanda Lipp had an episode of psychosis, her mom, Pam, struggled to find an open bed in a California hospital.

Heidi de Marco/Kaiser Health News

When 18-year-old Amanda Lipp needed to be admitted to a psychiatric hospital in 2010, her mom thought it would be easy to find a bed.

Instead, Pam Lipp says, "It was a nightmare."

Amanda had been admitted to a psychiatric crisis center during an episode of psychosis but she could stay there for only 72 hours. Lipp asked the crisis center for help finding her a bed and was told she was on her own.

So Lipp plugged her phone into the wall in the waiting room and started calling one hospital after the next. They were all full. They wouldn't reserve a spot when a bed opened, nor would they call to let her know. So she called each one every half-hour to check. After eight hours, she found her daughter an open bed near their home in Fair Oaks, Calif.

Usually, it's someone on the emergency room staff or a medical provider making such calls, rather than a patient or caregiver. The result, however, is the same: Finding an available inpatient psychiatric bed in California can be extremely difficult. Many patients with acute psychiatric conditions spend days in hospital emergency departments.

Additional Information: Web Resources Amanda Lipp's story

But how exactly to solve the problem has become a controversy in Sacramento.

An Assembly bill backed by the California Psychiatric Association and the Steinberg Institute, a mental health policy organization, seeks to establish an online registry to collect and display information to help medical providers find psychiatric beds. But the California Hospital Association is staunchly opposed, saying that finding the right placement for a patient is much more complex than identifying an empty bed. The hospital group says a registry could actually hinder efforts to get patients appropriate treatment.

The Assembly's Committee on Health plans to hold the first hearing on the bill on April 12.

Under the proposed legislation, AB2743, facilities with psychiatric beds would be required to update the registry as the beds became available, and emergency medical providers would be able to log on to search for openings.

"A bed registry would eliminate the need for rounds and rounds of calls over hours and hours. Why not just cut that time out and go straight to the source?" asks Anna Hasselblad, public policy director at the Steinberg Institute.

California is facing a serious shortage of psychiatric beds, said Randall Hagar, director of government affairs for the California Psychiatric Association. As of 2013, there were 6,680 beds in the state — about 17 per 100,000 residents, according to a report from the hospital association. Mental health specialists recommend a minimum of 50 beds per 100,000 people. In 25 counties in the state, there were no psychiatric beds at all.

The issue isn't unique to California. Nationwide, the number of state psychiatric beds is shrinking. In 2010, there were 50,509 state psychiatric beds, a decrease of 14 percent since 2005, according to a 2012 report from the Treatment Advocacy Center, a nonprofit organization dedicated to removing barriers to treatment for people with mental illness. That's a total of about 14 beds per 100,000 Americans, and in some states including Arizona, Minnesota, Iowa, there are fewer than five.

Adding beds is a long-term goal for many mental health advocates, but it's a huge task that could take years.

"We have to use the beds we do have and we have to know where they are. It can be a hit or miss process. It needs to be more reliable," said Hagar. "We've heard instances where people were told there were no beds when in fact it turns out later that there were. An online registry would fix that issue."

It would also provide data on exactly what types of additional beds are needed and where, he said.

The hospital association isn't convinced it would work.

"On first blush, if you are not in the trenches, it seems like the best and easiest solution in the entire world. But the reality is that the bill will really increase the amount of time and the frustration people have trying to locate psychiatric acute-levels of care in our state," said Sheree Lowe, the hospital association's vice president of behavioral health.

Beyond finding an open bed, staffers must also factor in the patient's age, gender, illness — and its acuity.

"You have to take under consideration your staffing needs, the needs of the other patients, and the therapeutic milieu for the safety of all patients and all staff. And that's not something you can put into a drop-down menu," said Lowe.

Requiring hospital staffers to report all those changing dynamics in an online registry, she added, would be yet another administrative burden that could cut into hands-on patient care.

Many states have some sort of computerized tracking system for psychiatric beds, but few are mandatory. Lowe points to a recent effort in Virginia to create a mandatory registry similar to the one being proposed in California as evidence that they don't work.

In January, the Virginia state inspector general reported that more than half of users of the online registry said it takes longer to find a bed for a patient than it did before the registry was established, in part because hospitals were not accurately updating information about their beds.

Hasselblad of the Steinberg Institute, however, said the issues with the Virginia system "is a little bit of a self-fulfilling prophesy. We have to get the buy-in from the people who will be updating the registry, because if you don't believe it's going to be useful to you, it's not going to be useful to you."

One solution, she said, would be to include a fine in the bill for hospitals that do not keep the registry updated. "Hospitals aren't going to do this unless they're absolutely mandated to."

Despite the opposition of the hospital association, the emergency room doctors who staff their facilities are generally supportive of the bill. Holding psychiatric patients for days in the emergency department is "a worst case scenario for everyone involved," said Elena Lopez-Gusman, executive director of the California chapter of the American College of Emergency Physicians.

And she said the hospitals with psychiatric beds may be making the problem worse by trying to reserve beds for patients with private insurance.

"Our physician members have reported a significant level of difficulty in getting what they feel is an accurate assessment of bed availability," said Lopez-Gusman. "They might call the same facility in a short time for two different patients with different types of insurance, and get different answers on whether or not there's a bed available. So our thought is that more transparency reduces the hospitals' ability to hide available beds."

Lowe of the hospital association denies that psychiatric hospitals are holding beds, which would be a violation of federal law.

Assemblymember Susan Talamantes Eggman, the Stockton Democrat who wrote the bill, said she believes the bill has a good chance of passing.

"We are very hopeful," she said. "There's a good coalition, and everyone is talking about mental health these days. This is a practical, small step we can take. It's hard to argue against it."

Pam Lipp, who struggled to find a bed for her daughter, said the idea of establishing a registry is "absolutely phenomenal."

"Our situation is exactly the kind of situation that hopefully this bill will help," she said.

"If I hadn't done what I did, our daughter would most likely have been discharged, back on the street with nowhere to go, and we would have just repeated the cycle again. Maybe she wouldn't have survived."

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Jenny Gold is on Twitter: @JennyAGold.

Copyright 2016 Kaiser Health News. To see more, visit Kaiser Health News.
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Zika Virus Can Cause Brain Defects In Babies, CDC Confirms

Wed, 04/13/2016 - 5:40pm
Zika Virus Can Cause Brain Defects In Babies, CDC Confirms Listen· 3:09 3:09
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April 13, 20165:40 PM ET Heard on All Things Considered Rae Ellen Bichell

Angelica Pereira feeds her daughter Luiza, who was born with microcephaly, at her mother's house in Santa Cruz do Capibaribe, Brazil.

Felipe Dana/AP

After months of hesitation, U.S. health officials now say that the Zika virus is indeed the cause of severe brain damage in the infants of some women who were infected with the virus during pregnancy.

A CDC review published online Wednesday in the New England Journal of Medicine describes evidence of what U.S. health officials now call a causal relationship between the virus and a severe form of microcephaly and intracranial calcifications.

The study marks a turning point in the current Zika outbreak, says Dr. Tom Frieden, chief of the CDC. "There's still a lot that we don't know, he says. "But there is no longer any doubt that Zika causes microcephaly."

A causal link between the bite of a mosquito and brain malformations is unprecedented, he says. "And it is because this was so unprecedented that we have until now waited to say that we have concluded that there is a causal link."

There was no single smoking gun, CDC officials say. Dr. Sonja Rasmussen, editor-in-chief of CDC's Morbidity and Mortality Weekly Report and an author on the report, says the conclusion came from looking systematically through the accumulating evidence.

The team used two approaches to confirm the link. The first method involved finding an overlap between a rare exposure and a rare defect. It was the same approach used years ago to confirm the effects of rubella on a pregnancy, and the same used to characterize fetal alcohol syndrome.

The second method looked at the timing of outbreaks in Brazil and French Polynesia and subsequent increases in birth defects. Researchers also looked at rare case reports of pregnant women who traveled to places with Zika virus transmission and subsequently gave birth to babies with microcephaly.

There were other clues. These babies have an unusual and particularly severe form of microcephaly. Plus, the virus has been found in the brain tissue of some babies with microcephaly who died.

Still, a lot of questions remain, the health officials say.

For example, it's unclear whether the baby's risk of brain damage is greater if the mother has symptoms of a viral infection while pregnant, compared with an infected woman who never experiences symptoms. And it's unclear how much that risk changes if a woman is infected early in pregnancy versus late in pregnancy.

Among the most pressing remaining questions, Rasmussen says, are these: "Does Zika cause defects other than those of the brain? Does Zika cause learning problems later in life? Are pregnancy losses, miscarriage, stillbirth among some women infected by Zika virus the result of the infection? And finally, are there other factors involved? For example, has another infection occurred at the same time as the Zika infection that might affect the risk of birth defects?"

Frieden says it could take years to get all those answers.

Copyright 2016 NPR. To see more, visit NPR.
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Technology Helps A Paralyzed Man Transform Thought Into Movement

Wed, 04/13/2016 - 1:18pm
Technology Helps A Paralyzed Man Transform Thought Into Movement Listen· 3:41 3:41
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April 13, 20161:18 PM ET Heard on All Things Considered

Ian Burkhart prepares for a training session in Columbus, Ohio. To move muscles in Burkhart's hand, the system relies on electrodes implanted in his brain, a computer interface attached to his skull, and electrical stimulators wrapped around his forearm.

Lee Powell/The Washington Post/Getty Images

Ian Burkhart, now 24, was paralyzed in 2010 after diving into a wave in shallow water. The accident left him with some arm movement but no use of his hands.

Then, about two years ago, scientists in Ohio equipped Burkhart with a system that allowed him to control his right wrist and hand with his thoughts.

"The first time moving my hand — that was really just like that flicker of hope," Burkhart told reporters during a media briefing Tuesday. The briefing was held to publicize a study in this week's issue of Nature, which describes Burkhart's progress since he started using the system.

After many months of practice, Burkhart can now perform tasks like pouring water from a bottle, grasping small objects, and swiping a credit card through a card reader. He can also control the movement of individual fingers.

It's all possible because of technology that intercepts and decodes electrical signals from the brain before they reach Burkhart's damaged spine.

"We're actually routing them around the spinal cord injury and then reinserting those signals into the muscles," says Chad Bouton, the study's first author and vice president of advanced engineering at the Feinstein Institute for Medical Research in Manhasset, N.Y.

Nature YouTube

The system relies on electrodes implanted in Burkhart's brain, a computer interface attached to his skull, and electrical stimulators wrapped around his forearm.

At first, Burkhart could grasp objects, but he would drop them when he moved his arm. His skill has improved steadily, though, Bouton says.

"Ian is learning how to think about very detailed movements and the machine is actually learning how to decipher those signals more effectively as well," Bouton says. "So they're actually learning together."

Burkhart's achievements have received a great deal of media attention. But he is just one of many paralyzed people using technology that allows them to perform daily tasks using their thoughts.

And much of the technology Burkhart relies on is also in use at other research centers, says Robert Kirsch, chairman of the department of biomedical engineering at Case Western Reserve University and executive director of the Cleveland Functional Electrical Stimulation Center.

"The brain computer interfacing that they did is kind of garden variety," Kirsch says. "And the electrical stimulation that they've done is really old-fashioned."

Other groups have obtained better results using electrical stimulators that are implanted in muscles, instead of placed on the skin, Kirsch says. That approach requires extra surgery but allows more precise control of muscles, he says.

At a scientific meeting last year, a member of Kirsch's team reported on a person using their technology who is able to use thoughts to trigger muscles in both the arm and hand. That's important, Kirsch says, because, unlike Burkhart, many other paralyzed people have no use of their arms or shoulders.

More than a decade of experiments has shown that paralyzed people can learn to use their thoughts to control computers, robotic arms and even their own limbs, says Leigh Hochberg, a professor of engineering at Brown University. Unfortunately, the systems that make this possible still aren't suitable for use at home, he says.

What people who are paralyzed really want, Hochberg says, is "a fully implanted technology, one that doesn't have wires or plugs that are sticking up above the scalp, doesn't have wires that are wrapped around the outside of the arm."

And that, he says, will require technological advances — including the ability to transmit signals from the brain without using wires.

"The process of getting from where we are today, which is some exciting early clinical research, all the way through to a clinically useful, vetted device that will help someone with paralysis is still a long one," Hochberg says.

Even so, Hochberg and other paralysis researchers say the wait will probably be measured in years, not decades.

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How LSD Makes Your Brain One With The Universe

Wed, 04/13/2016 - 12:12pm

That out-of-body experience is happening in your brain.

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Some users of LSD say one of the most profound parts of the experience is a deep oneness with the universe. The hallucinogenic drug might be causing this by blurring boundaries in the brain, too.

The sensation that the boundaries between yourself and the world around you are erasing correlates to changes in brain connectivity while on LSD, according to a study published Wednesday in Current Biology. Scientists gave 15 volunteers either a drop of acid or a placebo and slid them into an MRI scanner to monitor brain activity.

After about an hour, when the high begins peaking, the brains of people on acid looked markedly different than those on the placebo. For those on LSD, activity in certain areas of their brain, particularly areas rich in neurons associated with serotonin, ramped up.

Their sensory cortices, which process sensations like sight and touch, became far more connected than usual to the frontal parietal network, which is involved with our sense of self. "The stronger that communication, the stronger the experience of the dissolution [of self]," says Enzo Tagliazucchi, the lead author and a researcher at the Netherlands Institute for Neuroscience.

Tagliazucchi speculates that what's happening is a confusion of information. Your brain on acid, flooded with signals crisscrossing between these regions, begins muddling the things you see, feel, taste or hear around you with you. This can create the perception that you and, say, the pizza you're eating are no longer separate entities. You are the pizza and the world beyond the windowsill. You are the church and the tree and the hill.

Albert Hofmann, the discoverer of LSD, described this in his book LSD: My Problem Child. "A portion of the self overflows into the outer world, into objects, which begin to live, to have another, a deeper meaning," he wrote. He felt the world would be a better place if more people understood this. "What is needed today is a fundamental re-experience of the oneness of all living things."

The sensation is neurologically similar to synesthesia, Tagliazucchi thinks. "In synesthesia, you mix up sensory modalities. You can feel the color of a sound or smell the sound. This happens in LSD, too," Tagliazucchi says. "And ego dissolution is a form of synesthesia, but it's a synesthesia of areas of brain with consciousness of self and the external environment. You lose track of which is which."

Tagliazucchi and other researchers also measured the volunteers' brain electrical activity with another device. Our brains normally generate a regular rhythm of electrical activity called the alpha rhythm, which links to our brain's ability to suppress irrelevant activity. But in a different paper published on Monday in the Proceedings of the National Academy of Sciences, he and several co-authors show that LSD weakens the alpha rhythm. He thinks this weakening could make the hallucinations seem more real.

The idea is intriguing if still somewhat speculative, says Dr. Charles Grob, a psychiatrist at the Harbor-UCLA Medical Center who was not involved with the work. "They may genuinely be on to something. This should really further our understanding of the brain and consciousness." And, he says, the work highlights hallucinogens' powerful therapeutic potential.

The altered state of reality that comes with psychedelics might enhance psychotherapy, Grob thinks. "Hallucinogens are a catalyst," he says. "In well-prepared subjects, you might elicit powerful, altered states of consciousness. [That] has been predicative of positive therapeutic outcomes."

In recent years, psychedelics have been trickling their way back to psychiatric research. LSD was considered a good candidate for psychiatric treatment until 1966, when it was outlawed and became very difficult to obtain for study. Grob has done work testing the treatment potential of psilocybin, the active compound in hallucinogenic mushrooms.

He imagines a future where psychedelics are commonly used to treat a range of conditions. "[There could] be a peaceful room attractively fixed up with nice paintings, objects to look at, fresh flowers, a chair or recliner for the patient and two therapists in the room," he muses. "A safe container for that individual as they explore deep inner space, inner terrain."

Grob believes the right candidate would benefit greatly from LSD or other hallucinogen therapy, though he cautions that bad experiences can still happen for some on the drugs. Those who are at risk for schizophrenia may want to avoid psychedelics, Tagliazucchi says. "There has been evidence saying what could happen is LSD could trigger the disease and turn it into full-fledged schizophrenia," he says. "There is a lot of debate around this. It's an open topic."

Tagliazucchi thinks that this particular ability of psychedelics to evoke a sense of dissolution of self and unity with the external environment has already helped some patients. "Psilocybin has been used to treat anxiety with terminal cancer patients," he says. "One reason why they felt so good after treatment is the ego dissolution is they become part of something larger: the universe. This led them to a new perspective on their death."

Follow Angus Chen on Twitter @angrchen.

Copyright 2016 NPR. To see more, visit NPR.
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Why It's Getting Harder To Decide When To Treat High Blood Pressure

Wed, 04/13/2016 - 9:54am

The pressure is a little high. Now what?

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Are you ready for some more uncertainty about blood pressure treatment?

Decisions about blood pressure have gotten more difficult over the past couple of years as experts in the U.S. have failed to reach consensus on recommendations about when drug therapy should be started. Now there's new evidence that could make the decisions even more challenging.

Let's review first where there is agreement. Around the world, high blood pressure causes a lot of harm. Your risk of health problems — such as heart disease, stroke and kidney disease — increases with higher blood pressure. Your lifestyle can influence your blood pressure. A healthful diet, at least moderate physical activity and weight control can bring down your blood pressure. Those are good habits for everyone, in fact.

Medicines can help reduce the risk for people with higher blood pressure, say 150 millimeters of mercury and above for systolic pressure, the top number. Too many people have untreated and uncontrolled marked elevations of blood pressure and many devastating health problems could be prevented if we could help people get proper treatment.

What about medicines for people whose blood pressure is high but less than 150? Most doctors agree that people younger than 60 would do well to keep their blood pressure less than 140. The consensus is that the benefit of drugs for those who didn't respond to lifestyle changes exceeds the risks of treatment.

Some believe that for older patients, who may be more sensitive to medications, the recommendations should be more permissive and not push for treatment that brings blood pressure below 140. Then there's the SPRINT trial, whose results were released last November and suggested that people without diabetes, even older people, would benefit by seeking to get their blood pressure down to around 120.

Another study, called HOPE-3 for short, added important evidence about the treatment of blood pressure that will further unsettle the field. The findings were published April 2 by in The New England Journal of Medicine.

The researchers in the study randomized 12,705 people with at least one cardiovascular risk factor (like high cholesterol) to get blood pressure medication or placebo. At the time of randomization, the average systolic blood pressure was 138. Some people's pressures were higher and some were lower, or course. In fact, a third of the people had a beginning blood pressure less than 132.

So what did HOPE-3 find? The blood pressure medications worked. Study participants in the group that got blood pressure medicine had their systolic blood pressure lowered about 6 points more than those in the placebo group. However, after almost six years of follow-up, the investigators determined that lower blood pressure didn't translate into lower risk. The risks of death from cardiovascular causes, heart attacks, strokes and other problems weren't different between the groups.

The investigators explored the data further and found some evidence that the group in the highest third of blood pressure at the start (an average top number of 154) seemed to have a lower risk, while the group in the lowest third at the start (average of 122) seemed to do worse. These analyses were planned at the outset of the study, so we tend to give them a bit more weight.

So what happened?

HOPE-3 used common antihypertensive medications, an angiotensin receptor blocker called candesartan and a diuretic called hydrochlorothiazide. Could the results be explained by something about these medications?

Participants in the study had an average age of 65 years, about half were women, a quarter were smokers and almost all were overweight. Was there something special about them?

Or could it be that pushing blood pressure to ever-lower levels, even in a group at modest risk of heart disease and stroke, is just not producing benefit?

We don't know for sure.

Shots - Health News Blood Pressure Ruckus Reveals Big Secret In Medicine

The field is waiting eagerly for the next version of national guidelines about blood pressure. A group of experts in the field will look at all the evidence and give its opinion about whom to treat and when.

But how useful will general guidelines be for individual patients, given the conflicting evidence? How confidently will the experts be able to recommend strategies for people in the middle range of blood pressure?

The ultimate decision about treatment for each person should be informed by the fact that a definitive benefit hasn't been consistently shown for lowering blood pressure below 140 in people without known disease (we call this primary prevention). The results of the HOPE-3 indicate that the lower your blood pressure is, the less likely you are to benefit from starting drug therapy.

As always, if your blood pressure is in the range where there is controversy and you want to lower your blood pressure, your best first move is to adopt a healthful lifestyle and see what happens — and, of course, talk with your physician. Meanwhile, experts will be poring over the recent studies to try to reconcile the disparate results.

In medicine, we like it when the latest data bring clarity to personal decisions about treatments. But the reality is that studies often go in different directions and leave us even more uncertain about what to do next. That uncertainty, though, is still important information as you consider your options.

The disappointing conclusion about blood pressure is that we need more studies and more evidence. We also need better evidence — information that is more precise about what is likely to happen to us personally if we take medications for blood pressure.

We need to move faster to get the knowledge that is attuned to our personal characteristics and that can guide our decisions about the blood pressure number that's best and also the drug that would work best for each of us, if we need one. This is the hope of President Obama's Precision Medicine Initiative. Given the mixed evidence we have, this new era of knowledge cannot come fast enough.

Harlan Krumholz is a cardiologist and the Harold H. Hines Jr. Professor of Medicine at Yale School of Medicine. He directs the Yale-New Haven Hospital Center for Outcomes Research and Evaluation and is a co-director of the Robert Wood Johnson Foundation Clinical Scholars Program.

Copyright 2016 NPR. To see more, visit NPR.
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For Native Americans, Health Care Is A Long, Hard Road Away

Wed, 04/13/2016 - 7:30am

Cody Pedersen and his wife, Inyan, know that in an emergency they will have to wait for help to arrive.

Cody, 29, and his family live in Cherry Creek, a Native American settlement within the Cheyenne River Indian Reservation in north central South Dakota.

The reservation is bigger than Delaware and Rhode Island combined. But Cherry Creek has no general store, no gas station and few jobs.

When Inyan, 34, was preparing to give birth to her two youngest children, doctors scheduled her to have cesarean sections in a hospital rather than having her wait until she was in labor to come in.

Misha Friedman for KHN and NPR

In January, Cody was stabbed in the neck. It took an ambulance two hours to arrive.

A 17-mile gravel road in Cherry Creek connects to a better road that eventually leads to Eagle Butte, the largest town on the reservation and home to just over 1,300 people. That's where the closest doctors are.

When Cody runs out of gas money, he has to pay $40 to a neighbor to take him to the health center in Eagle Butte. But he can't do that before lucking out and securing an appointment, calling at 7 a.m. on the day he wants to see a doctor.

Clinics like the one Cody goes to don't allow patients to schedule appointments in advance.

There's a clinic in Cherry Creek, but it has been closed for weeks. Their 11-year-old daughter Makrista missed school for two weeks because they couldn't get a doctor's note to vouch that her head lice had gone away.

Before the 1950s, most Native Americans lived in reservations or near them. Then, with support from the federal government, many started moving to large cities, looking for employment opportunities and better education. Today, more than half of Native Americans live in urban areas.

The federal government is obligated by law to provide medical care to American Indians and Alaska Natives, and it does so through the Indian Health Service, an agency of the Department of Health and Human Services. There are also tribal-run health centers set up on reservations. And 20 states have Urban Indian Health Programs, which receive IHS funding to provide medical services and support to American Indians who don't live on reservations.

But there are still significant gaps in care, both on the reservation and in town. The IHS is chronically underfunded. It receives a set amount of money each year to take care of 2.2 million native people — no matter how much care they may need. On the reservation, IHS facilities often don't have services that people elsewhere expect, such as emergency departments or MRI machines. And those limited facilities can be hours away by car. In town, reaching care is easier, but clinics also don't have enough funding to meet all of the health needs of the community. And people can't get the free medication they are entitled to through the IHS anywhere but an IHS facility.

Donna Keeler is executive director at South Dakota Urban Indian Health, which has been providing health services to the American Indian population since 1977. Keeler says her clinics in Sioux Falls and Pierre receive federal grants, but that a federal prisoner has more health care funding allocated for his care than an urban American Indian does.

In 2013, Indian Health Service spending for patient health services was $2,849 a person, compared with $7,717 for health care spending nationally, according to a report from the National Congress of American Indians. That despite the fact that Native Americans typically have more serious health problems than the general public, including higher rates of diabetes, liver disease and unintentional injuries.

Keeler says most of her clients are the poorest of the poor. In other states, American Indians with low incomes can sign up for expanded Medicaid. But South Dakota lawmakers haven't expanded Medicaid coverage to low-income adults, leaving thousands of people, most of them urban, poor American Indians, without health coverage.

Gov. Dennis Daugaard, a Republican, has left the door open to a special legislative session this year in which lawmakers could consider a Medicaid expansion proposal, but consideration of such a proposal isn't guaranteed. If South Dakota did expand Medicaid, it would give clinics like the one Keeler runs additional funding, since the Medicaid reimbursement rates are higher than what IHS provides.

Still, even without Medicaid expansion, the Urban Indian Health clinic is an improvement for patients like Joe Marrowbone, Cody Pedersen's brother. Marrowbone moved out of Cherry Creek and off the reservation partially to get out of the cycle of poverty prevalent there, he says. It was an added bonus that access to health care for his family dramatically improved.

Marrowbone works as a janitor at a religious school in Sioux Falls. The Sioux Falls Urban Indian Health clinic is much closer to his home than it would be if he lived in Cherry Creek, and there's also the option of getting care at a local hospital. As a result, the family rarely has to wait long. Instead of worrying about where his health care is coming from, Marrowbone can focus on a new goal: trying to adopt his niece, Savannah, after her mother died.

Access and lack of funding are just two problems with Native Americans in South Dakota. Difficulties coordinating patient records also hamper their care.

Jami Larson, a resident nurse at Urban Indian Health Programs in Pierre, is frustrated that none of the systems with the Indian Health Service, tribal-run clinics or the Urban Indian Health Programs share patient data with each other. Each clinic has its own records, and patients who don't keep up with their own records often have to repeat immunizations or lab work.

For Larson, herself an American Indian, the year and a half that she's spent as a nurse at the clinic in Pierre has allowed her to develop deep relationships with her patients.

She says that care for them would improve if the clinics, hospitals and doctors serving American Indians worked together. For now, Larson is leaving her own mark the best she can: On many days, you can find her visiting patients to make sure they're on track, or going food shopping with some to help them get food that will keep them as healthy as possible.

This story and the related photo essay were produced through a collaboration between Kaiser Health News and NPR.

Photographer Misha Friedman says he tries "looking beyond the facts, searching for causes, and asking complex and difficult questions." His work has been featured by many media organizations, including NPR, The New Yorker, Sports Illustrated, Der Spiegel and GQ.

Kaiser's Andrew Villegas contributed to this report.

Copyright 2016 NPR. To see more, visit NPR.
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Political Gridlock Blocks Missouri Database For Fighting Drug Abuse

Tue, 04/12/2016 - 3:02pm

Michelle Pattengill, a technician at L&S Pharmacy in Charleston, Mo., holds a bottle of oxycodone.

Bram Sable-Smith/Side Effects Public Media/KBIA

At Richard Logan's pharmacy in Charleston, Mo., prescription opioid painkillers are locked away in a cabinet.

Missouri law requires pharmacies to keep schedule II controlled substances —drugs like oxycodone and fentanyl with a high addiction potential — locked up at all times.

Logan goes further than the law requires.

He's been a pharmacist for 40 years. For the last 20, he has also been a reserve deputy with two local sheriff's departments, investigating prescription drug abuse. That puts him on edge in his day job.

At Richard Logan's pharmacy in Charleston, Mo., prescription opioid painkillers are locked in a cabinet. For 20 years, he's also been a reserve deputy with two local sheriff's departments, investigating prescription drug abuse.

Bram Sable-Smith/Side Effects Public Media/KBIA

After his technicians count out a prescription for controlled narcotics by hand, Logan has them place the pills on a machine that resembles an overhead projector lit from the top instead of the bottom.

"There's a camera up there," Logan says. "It actually photographs each pill that we dispense."

When he has probable cause to suspect that a customer is trying to get opioids with a forged or fraudulent prescription, Logan will arrest them on the spot. When he only has a strong hunch and they're from out-of-state, he'll escort them out of the pharmacy and direct them to the nearest bridge out of Missouri, about nine miles away.

These run-ins with drug-seekers make Logan anxious to see the state enact a prescription drug monitoring program. A PDMP would be a statewide database tracking narcotics prescriptions, which doctors and pharmacists can check to catch signs of abuse or addiction and to intervene if necessary.

In the battle against America's surging opioid drug addiction, 49 states, the District of Columbia and even Guam have all implemented some kind of PMDP. Missouri is the only state that hasn't. A protracted political battle has kept the state from passing a law to establish one. That leaves pharmacists like Logan with few options.

He can only check the prescription history of patients on Medicaid, which tracks such data. But when a patient pays cash — a red flag for Logan — there is no record to check leaving pharmacists to guess whether the patient is in genuine pain, feeding an addiction or maybe looking for pills to sell.

"We want to take the best care of everybody that we can, and without a PDMP we are absolutely flying blind," he says.

State Rep. Holly Rehder has championed establishing a prescription drug database since joining the legislature in 2013. Several members of her family have had addiction issues.

Bram Sable-Smith/Side Effects Public Media/KBIA

Restrictions Versus Privacy

State Rep. Holly Rehder, whose district includes Charleston, has championed establishing a database ever since joining the legislature in 2013.

"I've been working on this since my feet hit the floor," she says.

It's an issue close to her heart. Her cousin died of a drug overdose. Her mother was addicted to prescription medications. Her sister used heroin. And for 13 years, her own daughter has struggled with drug abuse — an addiction that began with a legal prescription for Lorcet.

"I'm very candid about it," Rehder says. "I don't believe God gave me a microphone to keep my mouth shut."

She cites these databases' success in limiting drug abuse in other states. They make it harder for pill-seekers to "doctor shop," meaning go from doctor to doctor getting multiple, simultaneous prescriptions for the same drug.

One year after New York required its prescribers to check the state's PDMP before writing a prescription, for example, doctor shopping dropped by an estimated 75 percent.

Doctors surveyed in many states, including Connecticut and Rhode Island, say prescription drug monitoring programs have helped them identify opioid drug abuse and intervene with patients who need help. Those are reasons the federal government strongly recommends the databases.

For the third straight year, Rehder's bill has passed the Missouri House and moved on to the Senate. There, each year, it's been blocked by her main opponent on this issue, Sen. Rob Schaaf, a fellow Republican.

State Sen. Rob Schaaf points to evidence in support of his opposition to the database bill in his office at the Missouri State Capitol. He said the bill interfered with the right to medical privacy.

Jiselle Macalaguin/KOMU/ Flickr

"It's just the heavy hand of government taking away your liberty," he says. In 2012, before Rehder joined the legislature, Schaaf led an eight-hour filibuster of PDMP legislation, an act that has loomed over subsequent attempts to pass a similar bill. This year Schaaf has called the bill "dead on arrival."

The bill is currently in committee where a hearing on it has yet to be scheduled—and it likely won't be taken up by the full senate before the legislative session ends May 13.

Schaaf is a physician by training. To some, that background makes him a surprising opponent to prescription drug monitoring, which is supported by the Missouri Academy of Family Physicians, the Missouri American College of Physicians and the Missouri State Medical Association, among others.

He argues that drug monitoring may inhibit doctors from prescribing medications that patients really need. His main objection, though, is about privacy.

"The monitoring program would put every citizen's private drug information on a government database accessible to 30,000 people with usernames and passwords," he says. "That's just an outrage."

Rehder doesn't buy that argument. The database is electronic medical information, she says, so it would be protected by the same privacy laws protecting all electronic medical records. "It's not like anyone can go on a phishing expedition in this data."

"There is no data that is secure," Schaaf counters, citing hacks against the IRS and the Department of Veteran Affairs, and even Hillary Clinton's email imbroglio.

Rehder argues that 49 other states have faced these same questions about security and Missouri would be able to follow the best practices they've developed.

Schaaf says he isn't entirely opposed to prescription drug monitoring. He says he would allow Rehder's bill to pass the Senate if it included a provision that final approval for the database would be put before the voters — a test he doubts the bill could pass.

For the past three years, he has proposed his own monitoring legislation that would limit access to the database to Missouri's Bureau of Narcotics and Dangerous Drugs, which would then communicate concerns to providers.

Rehder says she can't support his bill because it would be cumbersome and impractical to implement, and that it's doctors who should be making decisions with the data.

"Missouri is the only state that doesn't have this. It's very shameful," Rehder says. "It's hurting our population so much."

In March, St. Louis County, which has one of the state's highest drug overdose death rates, passed its own PDMP. Other counties have signaled they would consider doing the same.

Jason Lynch has battled opioid use for 22 years, feeding his addiction with pills prescribed to him by doctors. Getting the pills "should have been a lot harder," he says.

Bram Sable-Smith/Side Effects Public Media/KBIA

Rehder says this is better than nothing, though she prefers a statewide database over a patchwork of county systems.

"We have got to start realizing that this isn't something we can close our eyes and turn our heads to because it's not going to affect us. It's affecting us," she says. "Our families are being torn apart, lives are being destroyed."

Twenty miles down the road from Logan's pharmacy and also in Rehder's district, 33-year-old Jason Lynch is close to completing a 120-day stay at Mission Missouri, an addiction treatment facility.

Lynch was given his first prescription painkiller by an older student on the school bus when he was just 11 years old.

"I think right from the get-go I was hooked because the next day I was trying to get some extra lunch money to buy some more," Lynch says.

He's battled opioid use for 22 years, feeding his addiction with pills prescribed to him by doctors. "I would research [symptoms] on the Internet and say, 'This is what's going on with my back.' "

Usually, Lynch says, the doctor would write him a prescription.

"It's nobody's fault but my own," Lynch says of his addiction, but, he adds, getting the pills "should have been a lot harder."

"You just think about what if those drugs weren't so available to him," Rehder says. "How could his life have been different?"

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

Copyright 2016 KBIA-FM. To see more, visit KBIA-FM.
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Even With Insurance Parity Rules, Counseling May Count As Specialty Care

Tue, 04/12/2016 - 11:58am
Trina Dalziel/Getty Images/Illustration Works

When it comes to insurance coverage for mental health counseling and infertility, how much can people expect? And what would happen to someone who gets a tax credit for buying a marketplace plan if a state expands its Medicaid program during the year? Here are the answers.

My son requires regular counseling from a psychologist to treat his attention deficit hyperactivity disorder. These are treated as medical specialty visits rather than general medical appointments in terms of copay requirements. Why does this coverage difference exist and is it consistent with the federal requirement that there be parity between medical and behavioral health coverage?

The Mental Health Parity and Addiction Equity Act of 2008 requires most health plans to provide mental health and substance abuse treatment benefits that are at least as generous as the plan's benefits for medical and surgical care.

There's no rule of thumb. A health plan may charge a higher copayment in some circumstances under parity rules, said Alan Nessman, senior special counsel for legal and regulatory affairs at the American Psychological Association Practice Organization.

It's called the two-thirds test. In general, a plan can't charge a higher copayment for mental health services than it applies to two-thirds of medical/surgical services. So, for example, if a health plan applies a $50 copayment to outpatient medical/surgical services by in-network providers at least two-thirds of the time, an insurer can charge a $50 copayment for all outpatient mental health services that are provided in network as well.

I have gone to a reproductive endocrinologist in hopes of having a child after an unsuccessful voluntary sterilization in 2010. My insurer is denying coverage for treatment, even though my state, New Jersey, has an infertility coverage mandate. My insurer covered the initial testing, medications and visits. Why am I running into walls on this?

There could be any number of reasons, said Barbara Collura, president and CEO of Resolve, an advocacy organization for people with infertility problems. There's no standard benefit design for infertility coverage. Some plans may deny services to people who were sterilized, even if the procedure was unsuccessful or has been reversed. Or an insurer may deny benefits because of a previous in vitro fertilization attempt, even if it was with a different insurer. The list goes on.

"We see a large number of denials that perplex the beneficiary, the provider, and maybe even the employer," Collura said.

New Jersey is one of more than a dozen states that mandate infertility coverage. But the mandate doesn't apply to employers with 50 or fewer employees and most companies that self-insure, meaning they pay their employees' medical claims directly rather than purchasing insurance for that purpose. In addition, under the New Jersey law, people who've been voluntarily sterilized don't meet the definition of infertile, according to Marshall McKnight, a spokesman for the New Jersey Department of Banking and Insurance.

Your best course of action is to appeal your insurer's denial, Collura said.

"I'm shocked and amazed at how often people get a denial letter, and then they file an appeal and it gets approved," she said. "It works."

If a state is expanding its Medicaid program in the middle of the year, does a marketplace plan customer with an income of 100 to 138 percent of the federal poverty level who is getting a premium tax credit have to switch to Medicaid? (It may be more expensive for someone who has already reached his out-of-pocket maximum for the year in the marketplace plan.)

Thirty-one states and the District of Columbia have expanded Medicaid to cover adults with incomes up to 138 percent of the federal poverty level (about $16,000 for one person). Some expansion states have imposed Medicaid premiums that are pegged to 2 percent of income as well as copayments.

If you were in a marketplace plan and you had reached your spending limit for the year, you wouldn't owe anything out of pocket in that plan for the rest of the year. So, hypothetically, if your state imposes premium contributions and copays, it could cost more to switch to Medicaid midyear, said Judith Solomon, vice president for health policy at the Center on Budget and Policy Priorities. At this time, it looks as if Louisiana is on track to expand Medicaid this summer, she said.

In any case, even if a state decided to expand Medicaid this year, you wouldn't generally be forced to switch midway through the year, Solomon said.

When you applied for coverage, if the marketplace determined that you were eligible for a marketplace plan and premium tax credits, that's essentially a decision that you weren't eligible for Medicaid, Solomon said, and "that decision can hold for the year."

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

Copyright 2016 Kaiser Health News. To see more, visit Kaiser Health News.
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Medicare Seeks Savings And Innovation With A Switch In Doctors' Pay

Mon, 04/11/2016 - 3:36pm

The Obama administration is recruiting as many as 20,000 primary care doctors for an initiative it hopes will change the way physicians get paid and provide care.

The program, which was announced Monday, will be run by the Centers for Medicare and Medicaid Services. The aim is to stop paying doctors based on the number of billable services and visits provided to Medicare beneficiaries and instead to tie payments to overall patient health and outcomes.

"We think there will be a high level of interest across states and regions among primary care providers," said Dr. Patrick Conway, the chief medical officer at CMS. "The model aligns with how doctors and patients want to practice medicine."

Under the five-year project, CMS will recruit primary care doctors into two separate payment tracks. Both will include a monthly payment to doctors for each Medicare beneficiary, but the amounts will vary.

The fee for doctors in the first track will average $15 a beneficiary; the physicians will also still be paid for each service they provide. The fee for the second track will average $28; doctors will receive lower fees than those in the first track for each service. (In both tracks, the monthly payments will be higher for patients with more complex health problems.)

The idea is that doctor groups will use the payments that aren't tied to specific services to develop different ways to provide care, including telephone and video consultations. They might also use care managers to help patients with their medications and chronic illnesses.

The payment change "really allows them to move away from a visit-based, fee-for-service structure," Conway said on a conference call with reporters.

Doctors who want to participate in the program have to commit to offering patients preventive care, support for chronic illnesses and 24-hour access to health care and health information.

Conway says CMS expects the second track, with lower fees for itemized services, to save Medicare about $2 billion over five years.

The project is based on a pilot program set up under the Affordable Care Act to test new ways to deliver and to pay for health care. The goals are to improving care and cut costs.

Fee-for-service systems encourage too much medical intervention, says Robert Berenson, a fellow at the Urban Institute who has written about medical payment systems. But, he adds, programs that only pay a flat fee for care and result in physicians or hospitals cutting back too much.

"This is an attempt to balance paying for visits at a reasonable rate and then reimbursing substantially for all the other activities that are necessary to provide care," he says, such as phone calls and coordinating with other doctors.

The CMS program is similar to successful health care payment systems in Denmark and the Netherlands that combine fees for itemized services and flat fees per patient.

Berenson says, however, that CMS's goal of including 20,000 doctors may be too high. CMS would be better off working out the glitches in the approach with a smaller number of physician practices before rolling it out more widely.

Copyright 2016 NPR. To see more, visit NPR.
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How Do 'Genetic Superheroes' Overcome Their Bad DNA?

Mon, 04/11/2016 - 11:07am
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April 11, 201611:07 AM ET Heard on All Things Considered

A lucky few stay healthy despite carrying genetic defects linked to serious diseases. What protects them?

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Scientists say they've figured out how to track down people they call "genetic superheroes."

These are people who remain healthy even though they were born with genetic mutations that would usually lead to devastating disorders.

If enough of these people can be identified and studied, the researchers hope they could yield important new insights into the causes of many genetic disorders and possibly lead to new ways to prevent or treat them.

"This is a powerful opportunity to benefit many people by searching within one person to find something that could help many," says Dr. Stephen Friend, who runs Sage Bionetworks, a nonprofit research center in Seattle, and helped lead the work.

If it turns out that these people are carrying other genes that produce proteins that protect them, researchers might be able to use that information to develop useful new drugs, Friend and others say.

"This is an incredibly impressive paper," says Daniel MacArthur, who studies genetics at Harvard and MIT but wasn't involved in the work, which was published Monday in Nature Biotechnology. He wrote a commentary accompanying the paper.

Researchers have long known that there are rare people who stay healthy despite profound genetic defects. Friend and his colleagues decided to systematically identify such individuals.

"We were interested in finding what might protect people from getting disease," Friend says. "If you're going to try to look at what protects people from getting disease, it is not necessarily the right thing to look at those who have disease. The right thing to do would be to look at those who have not gotten sick."

So Friend and colleagues at the Icahn School of Medicine at Mount Sinai in New York launched a massive search. They gathered genetic data from 586,306 people from around the world. The data came from private companies, hospitals, universities and elsewhere. The researchers then scanned the DNA sequences for known disease-causing mutations.

The researchers identified 13 people who had defects thought to always cause eight severe disorders, including cystic fibrosis. But none of the 13 individuals appeared to have developed any signs of these conditions, which Friend says is "very remarkable."

The absence of illness in these people suggests there may be something else in their genes, or in their environment, helping them. "There must be some protective element for them to have escaped the severity of the symptoms that would have been expected," Friend says.

Unfortunately, he says, none of the 13 had agreed ahead of time to allow researchers to contact them later for further studies. Ethical standards require prior consent to do that.

Had the subjects been asked to give consent upfront, researchers might have been able to determine what enabled them to escape what should have been their genetic fate.

"It's extremely frustrating not to be able to go back and to recontact them," Friend says.

But other researchers say the study is nevertheless important because it shows that advances in genetic and data analysis technologies have made it possible to find large numbers of these people. Because many genetic disorders are rare, large numbers of people would have to be found to yield useful information.

"If you'd asked me five years ago, it would have seemed laughable," MacArthur says. "But it seems entirely reasonable that over the next five years we will certainly have in the millions of individuals who could potentially be studied in this kind of work."

In fact, Friend and his colleagues have already identified a handful of other "genetic superheroes" through other means and have begun studying them. They include people who didn't develop Alzheimer's disease even though they are carrying mutations linked to the devastating brain disorder.

"We're actively decoding those individuals to identify how are they did they avoid getting that horrible disease," says Icahn's Eric Schadt, one of Friend's colleagues. "We're very excited about it."

The team is also also launching The Resilience Project, which aims to recruit millions of volunteers who have agreed in advance to let researchers study them.

"We hope to get tens of millions of people," Schadt says. "We think we have to be in the 1- to 10-million-person range to have a good shot to identify enough people across the different diseases to be effective at decoding and uncovering the reasons for their protection."

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Go To The Tape: A Cheap, Easy Way To Prevent Blisters

Mon, 04/11/2016 - 10:13am

The researchers were inspired by working with ultramarathoners, who can be sidelined by blisters despite years of training. These runners competed in the 2007 Badwater Ultramarathon in Death Valley, Calif.

Chris Carlson/AP

Blisters are the bane of weekend hikers and Olympic marathoners alike. Stanford researchers say they've found a simple, cheap method to help prevent them.

That humble hero is paper surgical tape, which often costs less than a dollar and is sold at most any pharmacy.

Their study, published Monday in the Clinical Journal of Sports Medicine, found that the paper tape reduced the instance of blisters by 40 percent.

Lead author Grant Lipman, an emergency medicine doctor at Stanford Health Care, says he was inspired by years of treating ultramarathoners.

"I started noticing just how trashed people's feet will become. And over 10 years of races, you just see these amazing athletes who have trained for years and spent all this money and they keep telling me the same thing — 'Doc, I feel great, it's just my feet.' And they'd be dropping out, they'd be hurt," Lipman says.

He says that decades of studies on blister prevention have failed to come up with an effective, low-cost solution. But anecdotal evidence suggested paper tape might work, so the team enlisted 128 ultramarathoners for a trial.

Those runners were all participating in RacingThePlanet, a 155-mile, six-stage ultramarathon held in the Jordan, Gobi, Madagascar and Atacama deserts in 2014.

On each runner, the researchers randomly selected a foot. They then asked the runner if that foot had any blister-prone areas. If it did, that part was taped; if not, they taped a randomly selected area.

"Then, we would compare on that just one foot their most sensitive area versus the rest of the foot. And we did that so we could directly see, could this tape prevent a blister directly under the tape?" Lipman says. "We really wanted to nail down the efficacy of the intervention."

According to the study, 98 of the 128 runners did not develop blisters under the tape. At the same time, 81 of the 128 got blisters in untaped areas.

So why does this work so well?

"The paper tape itself is very thin and it's very smooth. We theorized that because it's so smooth, it deceases friction and rubbing and shear stress on those sensitive areas just underneath the tape," Lipman says. He adds: "It's thatshear stress within the cell layers that causes separation of the cells and blister formation."

The paper tape also has a low adhesive quality, so when it does come off, it's less likely tear the skin and leave an open wound, he says.

Much previous research has been conducted seeking to prevent the "enemy of the feet," Lipman adds, but nobody had looked at paper tape specifically until now.

A study published in 1998 tried applying antiperspirant to the feet of military cadets to prevent blisters. The researchers found this to reduce blister formation, but with an unintended consequence — 57 percent of the cadets using the antiperspirant method reported skin irritation.

Of course, there's a huge array of other products designed to prevent blisters. One study found that a product called Blist-O-Ban reduced their formation, Lipman says — but it's many times more expensive than paper tape.

Lipman says he hopes this research will help more people to reach their finish lines free of debilitating blisters.

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A Fitbit Saved His Life? Well, Maybe

Mon, 04/11/2016 - 4:40am
A Fitbit Saved His Life? Well, Maybe Listen· 1:55 1:55
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April 11, 20164:40 AM ET Heard on Morning Edition iStockphoto

Wearing a Fitbit?

If so, you already know that electronic fitness trackers can let you keep records on your smartphone of how many steps you've walked, how much you've slept, maybe your heart rate, or even where you've been.

But what can the gadget tell your doctor? A few things that are pretty useful, it turns out.

Doctors at an emergency room in New Jersey recently used heart-rate data from a patient's Fitbit to quickly figure out what treatment he needed to get his suddenly irregular heartbeat under control. They published the case study online this month in the Annals of Emergency Medicine.

The patient showed up at the ER after a grand mal seizure, a little foggy and with no idea his heart was in trouble.

"He came in with atrial fibrillation, and he didn't recognize he was in it," Dr. Alfred Sacchetti, head of emergency medicine at the Our Lady of Lourdes Medical Center, in Camden, N.J., tells Shots. Atrial fibrillation is when the two upper chambers of the heart quiver very quickly and erratically.

"And so the team asked him," Sacchetti recalls, " 'Do you feel your heart racing?' He said, 'No, I really don't feel anything. I feel perfectly fine.' "

But he wasn't fine.

That's because a patient with atrial fibrillation is at increased risk of having a stroke. When the heart's chambers aren't in sync, blood may not fully empty from the upper chambers into the lower ones. If it pools long enough in the upper chambers, that blood can clot. A piece of the clot may break off, move through the circulatory system, and block blood flow to the brain — a stroke.

So when the doctors in New Jersey couldn't determine when the fibrillation began, they had to assume it might have been going on long enough to cause a clot.

At Our Lady of Lourdes, doctors prefer to treat atrial fibrillation aggressively — shocking the patient's heart to get it back into a normal rhythm, Sacchetti says. If it works, the patient can usually go home the same day, with no medication.

But if the abnormal heart beat has been going on for more than 48 hours, the risk of a clot is high.

In that case "he needs to get admitted to the hospital, put on [medication] to dissolve the clot, if it's there, and then perform a special echocardiogram through the patient's mouth and into the esophagus so you can get a good look at the heart," Sacchetti says.

This patient was wearing a Fitbit fitness tracker that had a heart rate monitor and connected wirelessly to his smartphone. With his permission, the doctors checked the data on the phone and figured out that the episode of arrhythmia had begun only about two hours before he showed up at the ER.

"We were able to hook him up to the pads, put him to sleep, give him a little shock, and let him wake up and go home," Sacchetti says.

Sacchetti is quick to point out that a Fitbit, or any other fitness tracker, is not a medical device; the information it provides is limited and varies from model to model.

But the doctor and his collaborators in the case study think such trackers might come in handy in other situations — such as when patients' symptoms ease before they arrive at the hospital.

When a patient comes in complaining of a sudden dizzy spell earlier in the day, for example, it might stem from a rapid heartbeat, or a sudden slowing. Or it might have nothing at all to do with the heart.

"If your heart rate dropped extremely low, we're probably going to keep you in the hospital" Sacchetti says. "If it just went fast for a short period of time, we're probably going to just put a Holter monitor on you and send you home."

A fitness tracker that monitors the heart might help doctors more quickly figure out which treatment to use.

But some other doctors are skeptical of the medical usefulness of the gadgets.

"This was interesting but not highly applicable and won't really change how we're going to do anything," says Dr. Mary Norine Walsh, a cardiologist and director of the heart failure and cardiac transplantation programs at St. Vincent Medical Center, in Indianapolis.

"There are no reliable studies showing whether fitness tracker data is accurate," Walsh says, and those studies would need to be done before physicians would use the devices widely.

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Parent Support May Help Transgender Children's Mental Health

Mon, 04/11/2016 - 4:39am
Parent Support May Help Transgender Children's Mental Health Listen· 4:32 4:32
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April 11, 20164:39 AM ET Heard on Morning Edition

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Sophie plays in her backyard in Bellingham, Wash. Her mother says she started objecting to being identified as a boy around age 2.

Ian C. Bates for NPR

Six-year-old Sophie says she has always known she's a girl. "I used to be Yoshi," she says. "But I didn't like being called Yoshi." And she didn't like being called a boy.

Sophie lives with her family in Bellingham, Wash. Her mother, Jena Lopez, says she started seeing the signs before Sophie turned 2.

"She'd say things like, 'I'm a she, not a he,' " Lopez says. "She would cry if we misgendered her. She'd become angry."

Sophie's parents didn't know what to do. They didn't know if this was just a phase, and they knew the statistics for transgender people are grim. Nearly all the research into transgender mental health shows poorer outcomes. Attempted suicide rates are nine times higher than for people overall, and rates of depression and anxiety are higher, too. But Sophie convinced them. "I proved it," she says.

There's very little data on children who have fully socially transitioned, says Kristina Olson, an associate professor of psychology at the University of Washington. Olson got interested in the subject when a friend's 10-year-old was transitioning from male to female. Olson knew attitudes about transgender people were changing, both in society and in science.

"Forty years ago everyone considered this to be a pathology," Olson says. It was considered a "gender identity disorder" until 2013, when it was changed to "gender dysphoria" in the fifth edition of the DSM, the diagnostic manual for mental health.

Olson says a lot of research still works under this assumption and is based on children in clinical settings where they've often been brought to be treated.

Sophie says she likes being a kid and "that I get to be Sophie."

Ian C. Bates for NPR

"So I had no idea, based on the literature, what impact my friend's decision would have on her child's life," Olson says.

That's especially important, since what research there is paints such a bleak picture. But it's not clear what's the cause of mental distress for transgender people. It could be due to internal factors, such as gender dysphoria, the tension resulting from having a gender identity that differs from the one assigned at birth. Or it could be due to external factors, such as discrimination and lack of support. As Tara Haelle reported last month in Shots, researchers are just starting to try to figure that out.

So Olson decided to do her own study looking at families who are supporting their child's decision to live as a gender different from their biological sex. The study, published in the March issue of Pediatrics, looked at the mental health of 73 transgender children between ages 3 and 12. What it found was strikingly different from other research.

"They had exactly the national average for depression," says Olson. "They are no more or less depressed. They show a marginal, like, a tiny bit of an increase in anxiety, but nowhere near the rates that previous work has found."

The study can't make a direct connection between the healthier outcomes and parental support, but Olson says it shows that the struggles that have been reported by people who transition aren't inevitable. Olson plans to follow the children to see what happens as they grow older. Adolescence is a time when many mental health problems emerge, and no one knows what will happen with these children over time.

There is a desperate need for research in this field, according to Dr. Aron Janssen, clinical assistant professor, Department of Child and Adolescent Psychiatry at NYU Langone's Child Study Center. "It's incredibly refreshing to have this little bit of good news, because I've seen in my work a lot of these kids with really positive outcomes. And their stories aren't often the stories that are told," Janssen says.

Jena Lopez with her daughters Sophie, left, and Nora. Research suggests that parental support is the key to good mental health in children who transition.

Ian C. Bates for NPR

The more common stories are of transgender people who are not supported and face discrimination that can lead to problems at school and at work, as well as poverty and increased risk of substance abuse

The hope is that if Sophie's gender identity is validated early on, she will be less vulnerable to mental health issues. Her mother says that rings true for her family. "She's blossomed," Lopez says.

Sophie says: "I like being a kid." And she likes "that I get to be Sophie."

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For The Navajo Nation, Uranium Mining's Deadly Legacy Lingers

Sun, 04/10/2016 - 5:08am

Navajo miners work at the Kerr-McGee uranium mine at Cove, Ariz., on May 7, 1953.

AP

The federal government is cleaning up a long legacy of uranium mining within the Navajo Nation — some 27,000 square miles spread across Utah, New Mexico and Arizona that is home to more than 250,000 people.

Many Navajo people have died of kidney failure and cancer, conditions linked to uranium contamination. And new research from the CDC shows uranium in babies born now.

Mining companies blasted 4 million tons of uranium out of Navajo land between 1944 and 1986. The federal government purchased the ore to make atomic weapons. As the Cold War threat petered out the companies left, abandoning more than 500 mines.

Maria Welch is a field researcher with the Southwest Research Information Center, which is working with the federal Centers for Disease Control and Prevention and state and local groups to gauge the impacts of uranium on Navajo families today. She surveys Navajo families for the Navajo Birth Cohort Study, which has 599 participants so far.

When they did the mining, there would be these pools that would fill up. And all of the kids swam in them. And my dad did, too.

On a recent day in Flagstaff, Ariz., she asks a mother about feeding practices for her baby. Forty percent of the tribe lacks running water. Welch learns that the mother mixes baby formula with tap water.

One of the study's findings: 27 percent of the participants have high levels of uranium in their urine, compared to 5 percent of the U.S. population as a whole.

Welch, who is Navajo, got involved in the study because of her own family's exposure to uranium. Both of her parents grew up next to mines, even playing in contaminated water.

"When they did the mining, there would be these pools that would fill up," she says. "And all of the kids swam in them. And my dad did, too."

Many Navajo unwittingly let their livestock drink from those pools, and their children play in mine debris piles. Some even built their homes out of uranium.

Maria Welch is a researcher studying the impact of uranium mining on Navajo families today. She also has a personal interest: Both her parents grew up next to mines.

Laurel Morales/KJZZ

All four of Welch's grandparents have died, and she worries about her parents' health and now her daughter's. Cancer rates doubled in the Navajo Nation from the 1970s to the 1990s.

"Why isn't there more of an outrage? Why isn't there more of a community sense of what the heck is going on? How did this happen? Why is this still occurring? Why hasn't anything been done?" she asks.

George McGraw, a human rights advocate working on the Navajo Nation, has one answer.

"Problems like this really disproportionately affect low-income communities of color," says McGraw, whose organization DIGDEEP is raising money to dig wells on the reservation.

"Flint (Michigan) might feel really far away from the Navajo Nation in rural Arizona. But when you look at the demographics of it, it really isn't," he says. "This is a community that has found themself voiceless."

Additional Information: Environment Feds Hope $5 Billion Settlement A Lesson For Polluters Environment Navajo Nation Farmers Feel The Weight Of Colorado Mine Spill

The U.S. Justice Department has recently gone after some of the mining companies. Since 2008, the Environmental Protection Agency has hauled away thousands of cubic yards of mine waste and has rebuilt nearly 50 contaminated homes, says EPA Regional Administrator Jared Blumenfeld. But there's still much more to be done.

"We're spending a lot of time making sure that the polluters pay, so it isn't the federal taxpayer," he says.

One company, Anadarko Petroleum, and its subsidiary Kerr-McGee recently paid $1 billion to the Navajo Nation for cleanup and as compensation to people living with the effects of uranium contamination.

But one-third of the mining companies have shut down or have run out of money. The federal government knew about some of the dangers decades ago, but only started the cleanup in recent years.

"We understand that there's frustration," Blumenfeld says. "We share that frustration that some of this takes a long time."

And the uranium issue on the Navajo Nation is part of a much bigger problem. Across the western United States there are more than 160,000 abandoned hardrock mines — thousands of which continue to pollute.

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Sleep Deprived: We're Recharging Our Phones, But Not Ourselves

Sat, 04/09/2016 - 7:55am
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April 9, 20167:55 AM ET Heard on Weekend Edition Saturday Additional Information:

Millions of Americans recharge their phones, screens and laptops before they go to bed at night, but do they recharge themselves?

Arianna Huffington, co-founder and editor in chief of The Huffington Post, says we are in the midst of a sleep-deprivation crisis that creates anxiety, as well as exhaustion, depression, a higher risk of motor vehicle accidents — and overall sleep-deprived stupidity. NPR's Scott Simon talked with her about her new book, The Sleep Revolution: Transforming Your Life, One Night at a Time.

Interview Highlights

You had a kind of wake-up call on this subject, didn't you?

Yes, actually nine years ago, April 2007. I collapsed from sleep deprivation and hit my desk on the way down and broke my cheekbone; that was my wake-up call. [It made me think about] changing my own life, understanding the science behind the need for sleep, and also looking around and seeing how many millions of us are in states of perpetual exhaustion to the point where it becomes the new normal and we don't even notice it.

Isn't there a kind of macho attached to people who feel they only need a little sleep to function?

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Oh, absolutely. There's a tremendous braggadocio going on. I had dinner with a guy recently who bragged that he had only gotten four hours sleep the night before. I didn't say it, but I thought: "This dinner would have been a lot more interesting if you had gotten five."

We hear employees being congratulated for working 24/7, which now we know is the cognitive equivalent of coming to work drunk. But it's changing. We are now in this amazing transition period where more and more companies are beginning to realize that living like that and working like that has actually terrible consequences — not just on the health and productivity of their employees but also on their bottom line.

You talk about sleep as a basic human right that we have not ranked among the right not to go hungry, the right to freedom of expression — that sort of thing.

It's a right that has been violated both in workplaces, where employees have been expected to be perpetually on, and by us, because we have so minimized the importance of sleep.

I will point out that Donald Trump says he gets by on just about four hours of sleep. Any reaction to that?

Yes, in fact, he displays every symptom of chronic sleep deprivation as described by the American Academy of Sleep Medicine: difficulty processing information, paranoid tendencies, mood swings. The way he made statements that he actually had to retract, like banishing women who have abortions, shows that sleep deprivation is a slippery slope.

How many times have you been doing interviews for this book and somebody has pretended to fall asleep on you?

Oh, it hasn't happened — are you about to do it?

I couldn't bring myself to do it.

I would consider it a compliment.

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When The Cost Of Care Triggers A Medical Deportation

Sat, 04/09/2016 - 7:00am
Lorenzo Gritti for NPR

In an emergency, hospitals, by law, must treat any patient in the U.S. until he or she is stabilized, regardless of the patient's immigration status or ability to pay.

Yet, when it comes time for the hospitals to discharge these patients, the same standard doesn't apply.

Though hospitals are legally obligated to find suitable places to discharge patients (for example, to their homes, rehabilitation facilities or nursing homes), their insurance status makes all the difference.

Several years ago I began caring for a man who'd been in our hospital for more than three months. He was in his 50s and had suffered a stroke. Half his body was paralyzed and he couldn't swallow food. After weeks of intensive physical, occupational and speech therapy, he regained his abilities to eat, drink and walk with only minimal help. But he still wasn't well enough to live on his own, prepare food or even get to the toilet by himself.

Ideally, we would have discharged him from the hospital to a rehabilitation facility so he could continue therapy and make more progress toward his prestroke state.

But our plan faced insurmountable barriers. First off, the patient was an immigrant who had entered the country illegally. Second, he didn't have insurance.

Because he lacked health coverage, no other facility would accept him. His immigration status meant that we couldn't find an outside charity that would cover the costs of his care or pay for insurance.

Our comparatively expensive acute care hospital was therefore compelled to hold him — with the meter running. After another month, it began to seem that he'd become a permanent resident of our hospital ward.

"Could he go back to Mexico?" our case manager asked.

We were startled. No one on my team had ever experienced a situation like this, so we began researching the possibility. As it turned out, it's a murky legal and ethical area that drew some public attention after an expose in The New York Times in 2008.

Nevertheless, our hospital faced a real financial burden, and the case manager pressed on. After reaching the patient's family in Mexico, and discussing issues with the Mexican consulate, the case manager began making travel arrangements to a rehabilitation hospital in Mexico.

Medical air transport to another country is an expensive proposition — roughly $50,000, depending on the equipment needed and the distance to the receiving facility in the patient's home nation.

From the hospital's point of view, it was easy to see that this large one-time expense would be worthwhile. The transfer to Mexico would put a stop to the indefinite, uncompensated costs of continued hospitalization. Further, the transfer would open up the patient's bed to a new (and presumably insured) patient.

After several meetings between our medical team, case management services, and a hospital administrator, I reluctantly agreed to sign off on the transfer.

Though the discharge plan left me feeling uncertain, I became more comfortable with the idea because our patient had the capacity to make his own decisions. He consented to return home to Mexico because it was clear that he was no longer physically able to work, and his family was also on board with the plan to help him.

A few weeks later the transfer was completed. The last I heard about the man, he had successfully arrived at the rehabilitation hospital near his hometown in Mexico.

I hadn't thought of this case for years until the combination of a recent Shots piece about dialysis and the heated rhetoric of the election season about immigration caused the memory to bubble back up into my consciousness.

Reflecting on the man's case, I began to wonder all over again: Who were we to send him back to Mexico? On the other hand, what alternative did we have for a safe and reasonable discharge?

I also hoped to understand if our experience was part of a broader trend or a sporadic occurrence. I could only find estimates of the number of so-called medical deportations because there isn't any required reporting or specific oversight. It's a murky area that falls in the gap between federal health and immigration regulations.

The best estimates suggest dozens or maybe a few hundred cases occur each year. I called several air ambulance companies to gauge the demand for such services, but none was willing to provide numbers or even go on record to discuss the practice in general.

One group that has studied the phenomenon offered a conservative estimate of 800 cases of medical deportation over a period of six years. "We field calls from across the country, so it is a national problem and not confined to border states," Lori Nessel, director of the Center for Social Justice at Seton Hall University School of Law, told me in an email.

Even in the absence of hard numbers, the medical community has responded to the investigative reporting and advocacy around the practice. In 2012, the American Medical Association added an opinion to its Code of Medical Ethics that states, in part, a "discharge plan should be developed without regard to socioeconomic status, immigration status, or other clinically irrelevant considerations."

A 2014 piece in The New England Journal of Medicine concluded with the opinion that doctors "...are uniquely equipped to display the moral courage necessary to advocate effectively for patients by calling attention to the profound ethical issues raised by repatriation," using a slightly fancier word for deportation.

Health care for immigrants is a hot button issue. Though the Affordable Care Act excludes immigrants who entered the country illegally from the mandate to purchase health insurance, many U.S counties have taken steps to provide preventive and chronic care for them. The obvious rationale is that this care saves money and prevents suffering in emergency situations.

I'm confident that the transfer home of the Mexican man who'd had a stroke was both consensual and sensible. But given reports of patients being transported without their consent, this practice needs legal clarity to match the ethical aspirations of my profession.

One thing is clear: Without a policy change, hospitalized people who entered the country illegally and who don't have insurance will remain vulnerable to the seemingly irreconcilable conflict in our society between commerce and medicine.

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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