NPR Health Blog

Syndicate content Shots - Health News
NPR's online health program
Updated: 24 min 48 sec ago

What Women Need In A Checkup: Test Less, Talk More

3 hours 40 min ago

Women often save up questions for an annual office visit that they think don't warrant a sick visit to the doctor during the year, research finds.

Tim Pannell/Fuse/Getty Images

Healthy young women can be forgiven for being confused about how often they're supposed to be getting into see their primary care doctor.

After all, annual checkups in general have come under scrutiny. Doctors who have reviewed the data say there is little scientific evidence to support routine pelvic exams or clinical breast exams in women who have no symptoms. Cervical cancer screening is now recommended only every three years. Even a routine blood test to measure cholesterol levels isn't recommended for women under 45.

So, is it best to skip that annual wellness visit with a gynecologist or other family practitioner?

Not necessarily. For one, there may be tests you aren't aware you should be getting. The U.S. Preventive Services Task Force recommends screening for chlamydia and gonorrhea in sexually active women 24 and younger, and in women older than that if they are "at increased risk for infection." And it recommends screening everyone ages 15 to 65 for HIV. It's not clear how often those tests should be done, but the task force says a "reasonable" approach would be a one-time screening, with further tests for people who engage in unprotected sex with a new partner, or develop other risk factors.

And even if you don't need a physical exam, it's good to schedule periodic face-to-face discussion with your doctor about preventive care or other health concerns, says Dr. Jennifer Gunter, a San Francisco Bay Area OB-GYN and pain specialist. Recommended routine care includes screening for problems like alcohol misuse, depression, obesity and intimate partner violence.

"It's about the conversations," says Dr. Wanda Filer, a family physician and president of the American Academy of Family Physicians. "What I like to say is, if there's something you want to talk to me about, it's fair game."

Women often save up questions for an annual office visit that they think don't warrant a sick visit to the doctor during the year, says Dr. Barbara Levy, an OB-GYN and vice president of health policy for the American Congress of Obstetricians and Gynecologists. That could mean asking whether the irregularities of your period are normal, or why you're tired all the time, or what Zika means for your plans to conceive. Or maybe you're wondering whether the method of birth control you've been using is the right one for you, or why you're experiencing incontinence when you sneeze, or whether you should start mammograms in your 40s, at 50 — or earlier — if you have a family history of the disease.

Some of those concerns might prompt a physical exam or test, but others won't.

Lots of women have questions for a doctor about their sex lives, says Gunter. Sex and some other topics are easier to discuss with a practitioner you know. "If you want to ask why you're having trouble orgasming, are you going to ask someone you've never met before?" says Gunter.

In some cases, that sort of check-in could even be done over the phone, she says.

Filer says patients shouldn't feel guilty about skipping an annual visit if they're up to date on recommended preventive care, including adult immunizations. But those who do like to touch base every year shouldn't feel guilty about scheduling an office visit, or worry they're wasting the doctor's time, she says. If your primary aim is to chat, just say that up front.

"You can say 'I don't think I need any tests, but please tell me if that's not true — I just want to be sure I have a relationship with a doctor,' " Filer advises. "Most family medicine doctors would value that immensely."

Katherine Hobson is a freelance health and science writer based in Brooklyn, N.Y. She's on Twitter: @katherinehobson

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

Sen. Tim Kaine's Record On Health Care: He's With Hillary

Wed, 07/27/2016 - 6:44pm

Virginia Sen. Tim Kaine counted health care policy among his chief concerns at a campaign rally for Hillary Clinton in Miami on July 23.

Justin Sullivan/Getty Images

As he takes the stage Wednesday night at the Democratic National Convention in Philadelphia, vice presidential nominee Tim Kaine is firmly in Hillary Clinton's camp — and his party's — on the big health care issues. Now a U.S. senator from Virginia, Kaine supports the Affordable Care Act and pushed its Medicaid expansion. He also worked to overhaul the mental health system when he was governor of Virginia.

Here are highlights and a few flashpoints of controversy from Kaine's health policy record:

Mental health

A defining moment in Kaine's tenure as governor was the 2007 mass shooting at Virginia Tech, where 33 people, including the gunman — a student at the school — died.

Almost exactly one year later, Kaine signed a $42 million legislative package to overhaul the state's mental health system. The money was used mostly for emergency mental health services, children's mental health services, increased case managers and doctors and jail diversion projects, according to the Virginia Office of the Attorney General.

"Somebody shouldn't be imprisoned because we won't provide funding for community mental health," Kaine said at a mental health conference in 2008, shortly after the bills were signed, according to the Virginian-Pilot in Norfolk.

Politics Where Tim Kaine And Hillary Clinton Stand On Key Issues

The package of laws made it easier for authorities to commit someone having a mental health crisis into treatment involuntarily. They no longer had to prove the patient was in "imminent danger." Instead, the new standard only required authorities to demonstrate a "substantial likelihood" that the person could cause serious harm to himself or others.

Together, Kaine and the state's General Assembly made a down payment on longer-term reforms for the delivery of mental health and behavioral health services in Virginia, says Peter Cunningham, a professor of health behavior and policy at Virginia Commonwealth University.


As a Catholic who worked with Jesuit missionaries in Honduras in 1980, Kaine says he opposes abortion personally but supports a woman's right to choose for herself. His stance has drawn criticism over the years.

Politics How Tim Kaine Went From City Council To Vice Presidential Candidate

"Personally, I'm opposed to abortion and I'm opposed to the death penalty," he said on NBC's Meet the Press in June. "The right thing for government is to let women make their own decisions."

That was a change from Kaine's position in 2005, when he supported parental consent laws and bans on "partial birth" abortions, causing the Virginia chapter of NARAL Pro-Choice America to withhold an endorsement in his gubernatorial campaign. As governor, he signed a bill creating "Choose Life" license plates in Virginia, which he said was an issue of free speech.

Since then, Kaine has actively supported Planned Parenthood and opposed abortion restrictions.

In 2013, Kaine cosponsored legislation to improve access to contraception.

Affordable Care Act

Kaine did not mark himself as a health care reformer when he was Virginia's governor, but his 2006-2010 term overlapped the recession when little change was happening anywhere at state or national levels, Cunningham points out.

"He was probably pretty typical of the middle-of-the-road Democratic governors in sort-of-purple states," Cunningham says. "When the recession hit, that precluded any other major health reform effort that he might have contemplated."

Shots - Health News As Indiana Governor, Mike Pence's Health Policy Has Been Contentious

Kaine supported Obamacare when he ran for Senate in 2012 and has since cosponsored bills to improve the law. Kaine has pushed for Medicaid expansion in Virginia and cosponsored legislation to incentivize expansion in other states as well. Like Clinton, Kaine has proposed adjusting the federal health care law to include some low-income families that aren't currently covered — fixing the so-called family glitch. This year, he cosponsored a bill to require more businesses to provide benefits under the ACA.

Public health

Kaine has occasionally incited controversy, as in 2007 when Virginia became the first state to require all girls to get the human papillomavirus vaccine (protection against a virus that can cause cervical cancer) before enrolling in high school. In 2009, he backed a bill that banned smoking in bars and restaurants in the tobacco-producing commonwealth.


Since his election to the Senate four years ago, Kaine has cosponsored bills that would establish an advisory committee to help the FDA approve new opioids, reform guidelines for the VA regarding the prescription of opioids, protect first responders from lawsuits when they administer emergency drugs to counteract an overdose, and create a drug monitoring program for Medicare.

Many of those bills were rolled into CARA — the Comprehensive Addiction and Recovery Act of 2016, which was signed by President Obama in July. The bill bore Kaine's name as a cosponsor.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

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

Many Well-Known Hospitals Fail To Score High In Medicare Rankings

Wed, 07/27/2016 - 4:51pm

The federal government released its first overall hospital quality rating on Wednesday, slapping average or below average scores on many of the nation's best-known hospitals while awarding top scores to many unheralded ones.

The Centers for Medicare & Medicaid Services rated 3,617 hospitals on a one- to five-star scale, angering the hospital industry, which has been pressing the Obama administration and Congress to block the ratings.

Hospitals argue that the government's ratings will make teaching hospitals and other institutions that treat many tough cases look bad. They argue that their patients are often poorer and sicker when admitted, and so are more likely to suffer further complications or die, than at institutions where the patients aren't as sick.

Medicare, which already publicizes on its website more than 100 hospital metrics, many of which deal with technical matters, acknowledges that the ratings don't reflect cutting edge care, such as the latest techniques to battle cancer. Still, it has held firm in publishing the rankings, saying that consumers need a simple way to objectively gauge quality. Medicare does factor in the health of patients when comparing hospitals, though not as much as some hospitals would like.

Medicare based the star ratings on 64 individual measures that are published on its Hospital Compare website, including death and infection rates and patient reviews.

Just 102 hospitals received the top rating of five stars, and few are those considered as the nation's best by private ratings sources such as U.S. News & World Report, or viewed as the most elite within the medical profession.

Your Health Heart Hospital Rankings Don't Reveal Whole Picture

Medicare awarded five stars to relatively obscure hospitals and a notable number of hospitals that specialized in just a few types of surgery, such as knee replacements. There were more five-star hospitals in Lincoln, Neb., and La Jolla, Calif., than in New York City or Boston. Memorial Hermann Hospital System in Houston and Mayo Clinic in Rochester, Minn., were two of the only nationally known hospitals to get five stars.

Medicare awarded the lowest rating of one star to 129 hospitals. Five hospitals in Washington, D.C., received just one star, including George Washington University Hospital and MedStar Georgetown University Hospital, both of which teach medical residents. Nine hospitals in Brooklyn, four hospitals in Las Vegas and three hospitals in Miami received only one star.

Some premiere medical centers received the second-highest rating of four stars, including Stanford Health Care in California, Massachusetts General Hospital in Boston, Duke University Hospital in Durham, N.C., New York-Presbyterian Hospital and NYU Langone Medical Center in Manhattan, the Cleveland Clinic in Ohio, and Penn Presbyterian Medical Center in Philadelphia. In total, 927 hospitals received four stars.

Medicare gave its below-average score of a two-star rating to 707 hospitals. They included the University of Virginia Medical Center in Charlottesville, Beth Israel Medical Center in Manhattan, North Shore University Hospital (now known as Northwell Health) in Manhasset, N.Y., Barnes-Jewish Hospital in St. Louis, Tufts Medical Center in Boston and MedStar Washington Hospital Center in D.C. Geisinger Medical Center in Danville, Pa. — which is a favorite example for national health policy experts of a quality hospital — also received two stars.

Nearly half the hospitals — 1,752 — received an average rating of three stars. Another 1,042 hospitals were not rated, either because they did not have enough cases for the government to evaluate accurately, or because, as with all Maryland hospitals, Medicare does not collect the necessary data.

The government said in a statement that it has been using the same type of rating system for other medical facilities, such as nursing homes and dialysis centers, and found them useful to consumers and patients. Those ratings have shown, Medicare said, "that publicly available data drives improvement, better reporting, and more open access to quality information for our Medicare beneficiaries."

In a statement, Rick Pollack, president of the American Hospital Association, called the new ratings confusing for patients and families. "Health care consumers making critical decisions about their care cannot be expected to rely on a rating system that raises far more questions than answers," he said. "We are especially troubled that the current ratings scheme unfairly penalizes teaching hospitals and those serving higher numbers of the poor."

A preliminary analysis Medicare released last week found hospitals that treated large numbers of low-income patients tended to do worse.

A sizable proportion of the nation's major academic medical centers, which train doctors, scored poorly, according to a Kaiser Health News analysis. Out of 288 hospitals that teach significant numbers of residents, six in 10 received below-average scores, the analysis found. Teaching hospitals comprised one-third of the facilities receiving one-star. A number were in high-poverty areas, including two in Newark, N.J., and three in Detroit.

"Hospitals cannot be rated like movies," Dr. Darrell Kirch, president of the Association of American Medical Colleges, said in a statement. "We are extremely concerned about the potential consequences for patients that could result from portraying an overly simplistic picture of hospital quality with a star-rating system that combines many complex factors and ignores the socio-demographic factors that have a real impact on health."

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

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

'Nose-y' Bacteria Could Yield A New Way To Fight Infection

Wed, 07/27/2016 - 3:00pm

With antibiotic-resistant super bugs on the rise, researchers are on an urgent hunt for other bacteria that might yield chemicals we can harness as powerful drugs. Scientists once found most of these helpful bacteria in soil, but in recent decades this go-to search location hasn't delivered.

Now, researchers at the University of Tübingen in Germany say that to find at least one promising candidate, we need look no further than our own noses.

The scientists report Wednesday in the journal Nature that a species of bacteria inside the human nose produces a substance capable of killing a range of bacteria, including the strain of drug-resistant Staphylococcus aureus known as MRSA.

The Tübingen team is delighted with their find. "It was totally unexpected," says study author Andreas Peschel.

The scientists already knew that S. aureus lives in the noses of about 30 percent of humans, usually without causing harm — most people never know they are carriers of the bacterium. But if the body becomes compromised (whether by surgery, physical trauma, an underlying illness or suppressed immune system) the little cache of S. aureus in the nose can suddenly launch an attack against its human host. And if the strain of bacteria is MRSA, that infection can be lethal.

The scientists wondered how 70 percent of human noses are able to avoid harboring S. aureus. They guessed it might have something to do with neighboring bacteria.

So the researchers pitted 90 different human nasal bacteria in one-on-one battles with S. aureus in the lab. Indeed, one of these bacteria — Staphylococcus lugdunensis — prevented the dangerous pathogen from growing.

They then studied the arsenal of chemicals that S. lugdunensis produces until they found one that stops S. aureus in its tracks – a new antibiotic that they named lugdunin.

Follow-up work confirmed that lugdunin can treat S. aureus skin infections in mice, and limit the spread of S. aureus in a rat's nose.

Lugdunin may already be keeping S. aureus out of our noses. In a group of 187 hospitalized people, the same scientists found S. aureus in the noses of just 5.9 percent of people who also harbored the lugdunin-producing bacteria, but 34.7 percent of those who didn't.

Other recent studies have shown that bacteria living in humans carry genes that have the potential to make antibiotics. The Tübingen study takes those results a step further by showing that an antibiotic produced by a bacterium in the human nose can successfully treat an animal's infection.

"This paper is a really nice follow-up," says Dr. Nita Salzman, a pathologist at the Medical College of Wisconsin. "It's a sort of proof of principle that the microbiome is a good source for novel antibiotics."

The researchers have applied for a patent for lugdunin, but say that the prototype antibiotic is still many years away from being ready to treat humans.

The really important contribution of this study is not lugdunin itself, says microbiologist Kim Lewis of Northeastern University, but rather the new approach for finding antibiotic-producing bacteria within our own bodies.

"The reason we ran out of antibiotics in the first place is because most of them came from soil bacteria and they make up 1 percent of the total [bacterial] diversity," Lewis says.

Scientists kept searching in soil, he says, because they already had some success there and know that soil bacteria are exceptionally good at producing antibiotics.

But now it's time to look within us. And the team in Tübingen has only just begun their hunt.

"We have started a larger screening program and we're sure there will be many additional antibiotics that can be discovered," says Peschel.

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

As Opioid Epidemic Surges, Medical Schools Try To Keep Pace

Wed, 07/27/2016 - 5:00am

Between 1999 and 2014, the number of deaths in the U.S. from prescribed opioids quadrupled. Meanwhile medical students were getting very little training on how to spot patients who are at risk for addiction, or how to treat it.

Matt Lincol/Getty Images/Cultura Exclusive

Jonathan Goodman can recall most of the lectures he has attended at the Stanford University School of Medicine. He can recite detailed instructions given more than a year ago about how to conduct a physical.

But at the end of his second year, the 27-year-old M.D.-Ph.D. student could not remember any class dedicated to addiction medicine. Then he recalled skipping class months earlier. Reviewing his syllabus, he realized he had missed the sole lecture dedicated to that topic.

"I wasn't tested on it," Goodman says, with a note of surprise.

Americans are overdosing on opioids such as heroin and prescribed painkillers at epidemic rates, and the nation's doctors appear to be inadequately prepared to help.

The problem begins in medical school.

A report in 2012 by The National Center on Addiction and Substance Abuse revealed that medical schools devoted little time to teaching addiction medicine — only a few hours over the course of four years. Since then, the number of Americans overdosing from prescribed opioids has surpassed 14,000 per year, quadrupling from 1999 to 2014.

But Stanford's medical school may offer an example of what faculty-driven change in teaching about addiction can look like.

The school began retooling its curriculum after the director of its addiction medicine fellowship, Dr. Anna Lembke, expressed concern about its meager offerings in that field.

Lectures on addiction will no longer be folded into the psychiatry series as a side note, but instead will be presented as a separate unit relevant to future doctors in any subspecialty, Lembke says. And that training will continue when the students leave the classrooms for clinical rotations.

"We're at the very bottom of a very long uphill road," says Lembke, who gave the lecture Goodman missed.

Medical faculties have traditionally eschewed teaching the subject, in part because many physicians viewed addiction as a personal vice rather than a disease. And, even now, some doctors who specialize in addiction treatment are skeptical that the best care for the problem comes out of a medical model.

For example, Dr. Joe Gerstein, a retired internist and clinical assistant professor at Harvard Medical School, is founding president of SMART Recovery, an international program that emphasizes cognitive behavioral therapy and positive thinking to help people beat their drug habit.

"Clearly, if you've got an addiction, you've been making a lot of bad choices," says Gerstein. Framing substance abuse strictly as a disease ignores the fact that some people are able to quit their use of a drug with willpower, he says.

Still, those who believe in the value of medical treatment for addiction say it can no longer be an afterthought in medical education. Because the current opioid epidemic is largely linked to prescribed opioid painkillers, many doctors are being forced to grapple with addicted patients in their practices. In March, the American Board of Medical Specialties officially recognized addiction medicine as a subspecialty.

In a March report, the California Health Care Foundation cited inadequate medical school training as one of the challenges in treating patients addicted to opioids.

The White House has also been pressuring medical schools to improve instruction on opioid addiction by issuing pledges for schools to sign, promising to change their curricula. But as recently as April, Lembke hadn't yet heard of any concrete plans to change Stanford's curriculum.

In late spring, however, she was asked to meet with the dean of the medical school about bolstering education in addiction medicine. Working with fellow faculty members, Lembke is now expanding addiction medicine beyond the lone talk she gives on opioids each year to a series of lectures that recommend and teach alternative treatments for pain, like acupuncture or massage.

Lembke will also seek an endorsement of her fellowship program by the Accreditation Council of Graduate Medical Education. Accreditation can help programs get additional funding.

One of Lembke's Stanford colleagues, Dr. Jordan Newmark, who directs education in the medical school's pain division, is seeking to increase medical students' training on opioids in their third and fourth years. His plans for clinical training sessions include having actors portray patients with opioid addictions.

The next hurdle is to recruit doctors to specialize in addiction medicine, says Emily Feinstein, director of health law and policy at the National Center on Addiction and Substance Abuse.

Among the challenges in getting young doctors interested in the field, Feinstein says, are low insurance reimbursement rates and having to deal with patients who can be difficult behaviorally because of their drug use.

It's best to reach doctors at the start of their careers, Lembke says — before they've established a practice and get set in their ways.

This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.

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

Insurers May Share Blame For Increased Price Of Some Generic Drugs

Tue, 07/26/2016 - 4:53pm

When your health insurer reclassifies a prescription drug you take from tier 1 to tier 2, it can sharply increase the portion of the drug's cost that you're expected to pay.

Roberto Machado Noa/LightRocket via Getty Images

With recent reports that drugmakers have sharply raised the prices of some prescription drugs, a reader has written in to ask why a common generic drug is also suddenly costing him more. Another reader has questions about health plans with high deductibles. Here are those readers' questions, and what I've learned about the answers.

I take levothyroxine, the generic form of Synthroid, to treat a thyroid disorder. This generic has been on the list of drugs that cost $10 for a 90-day supply at my pharmacy for as long as I can remember. Starting in April, the drug was dropped from the list and the price rose 300 percent. The pharmacist tells me all the generic drug manufacturers are raising prices. How is it possible that this drug increased in price so quickly?

Generic drug price hikes have come under close scrutiny lately, as reports continue to surface of significant and seemingly inexplicable increases. Some drugs affected — including your thyroid medicine, as well as the common heart medicine digoxin — are widely used and have had relatively modest prices for years.

What gives? Health care professionals like your pharmacist often blame drug manufacturers, claiming they raise prices simply because they can. There's no question that happens, says Dan Mendelson, president of the consulting firm Avalere Health. But there are other reasons that generic drug prices may increase as well.

For example, insurers may have simply changed the design of their health plan's drug benefit, Mendelson says. They may have moved the drug into a higher tier — one that requires consumers to pay a bigger chunk of the cost. Drug prices also sometimes increase because the cost of manufacturing or distributing the drug has increased.

But consumers don't have to simply pay up. Drug costs often vary widely from pharmacy to pharmacy, so shopping around makes financial sense. In addition, some retailers offer rock-bottom prices on dozens of generic drugs to consumers who pay cash. If you're ponying up $4 in cash instead of a $30 copay for each refill, the savings can quickly add up.

Do you know of any insurance carriers that are selling high-deductible marketplace plans where once the deductible is met, the plan pays 100 percent of the costs after that? In other words, the deductible and the out-of-pocket maximum would both be the same?

It's not unusual to find plans that are structured the way you describe, particularly among bronze-level plans, says Linda Blumberg, a senior fellow in the Health Policy Center at the Urban Institute. Blumberg and colleagues analyzed the availability of these plans on the federal marketplace, which runs the insurance exchanges for about two-thirds of U.S. states.

Such a plan might have a deductible of $6,850 for individual coverage, for example, which is also the maximum that someone with an individual plan can be required to spend out of pocket for covered care in 2016.

Some insurers have touted this type of plan for its simplicity, noting that there's only one number to keep track of. Still, at the bronze level, a health plan that picks up all costs after the deductible is met is likely to have a deductible of several thousand dollars. Bronze plans are the least generous of the four levels of coverage on the exchange.

Still, even in a high-deductible plan, some care is covered before the deductible is met, including preventive services. Under the Affordable Care Act, consumers don't have to pay out of pocket for preventive care if it has been recommended by the U.S. Preventive Services Task Force. In addition, some insurers offer plans that cover a certain number of primary care visits or generic drugs, for example, that are exempted from the deductible.

If you're considering a plan whose deductible and out-of-pocket maximum are the same, Blumberg says, carefully check the particulars of what's covered.

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Health care reporter Michelle Andrews' column appears as part of NPR's partnership with Kaiser Health News. Andrews is on Twitter: @mandrews110

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

A Sniff Test For Alzheimer's Checks For The Ability To Identify Odors

Tue, 07/26/2016 - 1:57pm
A Sniff Test For Alzheimer's Checks For The Ability To Identify Odors Listen · 3:17 3:17 Toggle more options
  • Download
  • Embed Embed "> <iframe src="" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
  • Transcript
July 26, 20161:57 PM ET Heard on All Things Considered

Parkinson's disease, smoking, certain head injuries and even normal aging can influence our sense of smell. But certain patterns of loss in the ability to identify odors seem pronounced in Alzheimer's, researchers say.

CSA Images/Color Printstock Collection/Getty Images

Two studies released at an international Alzheimer's meeting Tuesday suggest doctors may eventually be able to screen people for this form of dementia by testing the ability to identify familiar odors, like smoke, coffee and raspberry.

In both studies, people who were in their 60s and older took a standard odor detection test. And in both cases, those who did poorly on the test were more likely to already have — or go on to develop — problems with memory and thinking.

"The whole idea is to create tests that a general clinician can use in an office setting," says Dr. William Kreisl, a neurologist at Columbia University, where both studies were done. The research was presented at the Alzheimer's Association International Conference in Toronto.

Currently, any tests that are able to spot people in the earliest stages of Alzheimer's are costly and difficult. They include PET scans, which can detect sticky plaques in the brain, and spinal taps that measure the levels of certain proteins in spinal fluid.

Shots - Health News Finding Simple Tests For Brain Disorders Turns Out To Be Complex

The idea of an odor detection test arose, in part, from something doctors have observed for many years in patients with Alzheimer's, Kreisl says.

"Patients will tell us that food does not taste as good," he says. The reason is often that these patients have lost the ability to smell what they eat.

That's not surprising, Kreisl says, given that odor signals from the nose have to be processed in areas of the brain that are among the first to be affected by Alzheimer's disease.

But it's been tricky to develop a reliable screening test using odor detection.

So Kreisl and a team of researchers studied 84 people in their 60s and 70s, including 58 with the sort of memory problems that suggest early Alzheimer's.

The participants took something called the University of Pennsylvania Smell Identification Test, or UPSIT.

"It's basically a set of cards," Kreisl says. "And each card has a little scratch and sniff test on it." The cards feature familiar odors like coffee, chocolate, cinnamon and licorice.

The study found that people who had trouble identifying odors were three times more likely than other people to have memory problems. Moreover, the odor test "was able to predict memory decline in older adults about as well as the PET scan or spinal tap," Kreisl says.

A second study by another team from Columbia followed, for more than four years, 397 people whose average age was 80 at the start. Their scores on the odor test were a good predictor of which people were most likely to go on to develop dementia, the researchers found.

The odor tests aren't perfect. For one thing, other degenerative brain diseases, including Parkinson's, can also affect odor detection. Also, the ability to smell can be diminished by smoking, certain head injuries and even normal aging.

So researchers are looking at other "biomarkers" of Alzheimer's, including some changes that affect the eye.

"The eye has nerves that are very closely linked to the brain," says Maria Carrillo, chief science officer of the Alzheimer's Association. So changes in those nerves can help reveal early Alzheimer's.

But all the screening tests for Alzheimer's are of limited value, Carrillo cautions, because there is still no drug that can slow or halt the disease.

"What we really need," she says, "is to be able to use these screening tools at the same time that we have a therapeutic."

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

'Sister Clones' Of Dolly The Sheep Are Alive And Kicking

Tue, 07/26/2016 - 11:04am
'Sister Clones' Of Dolly The Sheep Are Alive And Kicking Listen · 3:29 3:29 Toggle more options
  • Download
  • Embed Embed "> <iframe src="" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
  • Transcript
July 26, 201611:04 AM ET Heard on All Things Considered

Four sheep cloned from the same genetic material as Dolly roam the paddocks in Nottingham, England.

The University of Nottingham

About four years ago, Kevin Sinclair inherited an army of clones. Very fluffy clones.

"Daisy, Debbie, Denise and Diana," says Sinclair, a developmental biologist at the University of Nottingham in England.

The sheep are just four of 13 clones that Sinclair shepherds, but they're the most famous because of their relation to Dolly, the sheep that made headlines two decades ago as the first successfully cloned mammal.

" 'Sister clones' probably best describes them," Sinclair says. "They actually come from the exactly the same batch of cells that Dolly came from."

Recently, Sinclair and his colleagues celebrated the sister clones' ninth birthday, which, he explains, would be like the 70th birthday of a human. In an article out Tuesday in the journal Nature Communications, Sinclair and his colleagues write that the ewes' age, along with their strapping health, might be a reason for people to start feeling more optimistic about what cloning can do.

Dolly's life did not turn out as scientists in the cloning field hoped it would. She died young — 6 1/2 — with a nasty lung virus. "That was really just bad luck," Sinclair says, and had "nothing to do" with the fact that Dolly was a clone.

20 Years Ago, A Cloned Sheep Named Dolly Was Born

But she also had osteoarthritis in her knees and rear hip at a surprisingly early age and the tips of her chromosomes were short — both signs that she'd aged more quickly than a normal sheep.

"That sort of threw fuel to the fire and strengthened concerns that clones might be aging prematurely," says Sinclair. Because clones like Dolly were derived from the cell of an adult animal, the thinking went, her body might be set to an older clock from the start.

It was a daunting concept for those in the cloning field, because, says Sinclair, "If you're going to create these animals, they should be normal in every respect. They should be just as healthy as any other animal that's conceived naturally. If that is not the case, then it raises serious ethical and welfare concerns about creating these animals in the first place."

But, the good health of the 13 clones in the Nottingham herd suggest better prospects for the procedure. Sinclair and his colleagues evaluated the animals' blood pressure, metabolism, heart function, muscles and joints, looking for signs of premature aging. They even fattened them up (since obesity is a risk factor for metabolic problems including diabetes) and gave them the standard tests to gauge how their bodies would handle glucose and insulin.

The results? Normal, normal, normal.

"There is nothing to suggest that these animals were anything other than perfectly normal," says Sinclair. They had slight signs of arthritis (Debbie in particular), but not enough to cause problems. "If I put them in with a bunch of other sheep, you would never be able to identify them," he says.

The scientists haven't investigated the length of the animals' chromosome tips, called telomeres. That will have to wait until the animals die, so scientists can get cells from a variety of organs.

But Beth Shapiro, an evolutionary biologist at the University of California, Santa Cruz, says the results of this study are already plenty exciting.

"It provides another boost to those of us who are hoping this technology might someday be useful for conservation," says Shapiro, who recently wrote a book called How to Clone a Mammoth: The Science of De-Extinction. She's one of the scientists interested in cloning endangered animals to keep them from dying off, and also hopes to — maybe — rescue species that have already gone extinct.

For example, if biologists noticed that the population of an important species was plummeting toward extinction, and that its absence would likely cause a cascade of changes to the ecosystem, the researchers might consider cloning the animals to help boost the population back up to sustainable numbers.

"This science is showing us [that] if we can get by what we know is the trickiest and least efficient part of this process, then the clones that are born are, in essence, just like anything else that's alive — perfectly healthy and perfectly capable of living to old age," says Shapiro.

As for the sheep clones in his care, Sinclair says "they will continue to lead normal sheep lives." Once they reach the ripe old age of about 10, they'll be euthanized and the researchers will do a detailed postmortem analysis of their bodies.

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

Children Exposed To Hepatitis C May Be Missing Out On Treatment

Tue, 07/26/2016 - 5:00am

New drugs like Harvoni effectively cure hepatitis C, but they haven't yet been approved for use in children.

Lloyd Fox/Baltimore Sun/TNS via Getty Images

Several times a month, Jessica Wen, a pediatrician specializing in liver diseases, has a teenager show up at her clinic at the Children's Hospital of Philadelphia with an unexpected diagnosis: hepatitis C.

Hepatitis C virus, or HCV, is the most common bloodborne infection in the U.S. and a leading cause of liver failure and cancer. Injection drug use is a common risk factor, as is receiving a blood transfusion before 1992. But some of the teens Wen sees picked up the illness another way: at birth, from their mothers.

"I have diagnosed moms after diagnosing the kids," Wen says, referring to mothers who have hepatitis C, didn't know it and then passed it to their babies during childbirth. Wen estimates that about 1 or 2 of every 1,000 young children have chronic hepatitis C.

A study by the Philadelphia Department of Health points to what Wen and others in the medical profession see as a worrisome trend: Children with hepatitis C may be unaware of their diagnosis and the potential need for treatments down the road to prevent long-term liver damage.

Using city surveillance data, the study found that as many as 8 in 10 children at high risk for hepatitis C exposure in Philadelphia were never screened for the condition. More specifically, of the approximately 500 moms-to-be who were registered as having hepatitis C between 2011 and 2013, only 84 of their newborns, or about 16 percent, were tested for the virus by 20 months of age.

"Sixteen percent is really low," says Danica Kuncio, lead author of the study. "When you think about children, you hope that the number would be 100 percent, that it should be in the interest of every provider to be doing the best they can to get information to the next provider."

Kuncio, an epidemiologist with the city, worries that people who don't know they contracted hepatitis C as babies won't get the health care they need or realize they could spread the virus to others through blood-to-blood contact. It's a concern intensified by a rise in both injection drug use and hepatitis C among women of childbearing age, she said.

"It's a call to arms to figure out how we can do this better," said Dr. Michael Narkewicz, who specializes in pediatric liver diseases and hepatitis C at the University of Colorado School of Medicine.

Not so long ago, the lack of drugs to cure hepatitis C made screening less of a priority. But in 2013, the Food and Drug Administration approved the first of several drugs that effectively eliminate the virus. Now, with access to these expensive medicines, the condition has gone from chronic and debilitating to curable.

Narkewicz and others say the next frontier is to prove these treatments are safe and effective in children. Clinical trials are underway, and he thinks the drugs could become available for children in the next year or two.

But unlike HIV, which has safe and effective treatments that can dramatically reduce transmission of the virus from mother to child, "for hepatitis C, there are no treatments to prevent transmission in a mom or in a newborn," said Narkewicz.

Hepatitis C in children may be lacking attention for another reason: perinatal transmission rates are a lot lower for hepatitis C compared with hepatitis B and HIV. For every 100 babies born to women with HCV, 5 to 7 will contract the virus. Of those who do get it, 30 to 40 percent will clear it on their own before the age of 2, said Narkewicz. That's why the current protocols for children exposed to HCV call for monitoring and then screening them at 18 months with an antibody test.

But up to 15 percent of those born with HCV will develop a more aggressive form of the disease during adolescence, said Narkewicz, which can result in advanced fibrosis or liver scarring that can progress over time. "It's a small percentage, but it's still a real number," he said.

The medical community really hasn't done a good job of projecting the costs and benefits of early identification and treatment in children, according to Dr. Ravi Jhaveri, a pediatrician at UNC Children's Hospital in Chapel Hill, N.C.

A lot of research issues related to mother-to-infant transmission have "fallen by the wayside," Javeri says, as doctors have focused on other aspects of HCV.

"The old dogma was, why screen mothers if there's nothing to be done?" says Dr. Regino Gonzalez-Peralta, a pediatrician at the University of Florida Health System in Gainesville. He has been studying gaps in identifying children infected with hepatitis C and says that having new drugs to treat children will be a game changer.

While drugs to prevent transmission are not yet available, there are promising developments. "Now [that] we've got drugs that potentially might be useful in preventing maternal-fetal transmission," says Gonzalez-Peralta, "this is going to become a hotter area."

Another issue under debate is universal screening for the virus. Dr. Damien Croft, an obstetrician at Hahnemann University Hospital in Philadelphia, doesn't advocate it for everyone in the country. But he thinks it might be a good idea for his pool of patients. "There [are] enough women who are high risk for hepatitis C in Philadelphia that maybe we should consider doing that."

Croft also thinks it's important to improve communication between obstetricians and pediatricians so the pediatrician will know which children are at higher risk for having hepatitis C and can recommend screening.

In the meantime, Philadelphia's health department has begun working with health care providers and at-risk mothers in the city to improve the testing of infants born to women with hepatitis C, and when necessary, linking mother or child to specialists.

This story is part of a reporting partnership with NPR, WHYY's health show, The Pulse, and Kaiser Health News.

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

Single Mom's Search For Therapist Hampered By Insurance Companies

Mon, 07/25/2016 - 4:17pm
Single Mom's Search For Therapist Hampered By Insurance Companies Listen · 5:32 5:32 Toggle more options
  • Download
  • Embed Embed "> <iframe src="" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
  • Transcript
July 25, 20164:17 PM ET Heard on All Things Considered


Natalie Dunnege's son, Strazh, has autism. "He's really a good kid," Dunnege says, "But it's a lot to handle, especially as a single parent."

Sheraz Sadiq/KQED

A 12-year-old boy named Strazh hangs from the monkey bars, staring at the ground. The other kids in the park in San Francisco aren't interested in him. And he's not interested in them.

"I just like to play by myself," he says.

Strazh has autism. Today is a good day. But on most others, Strazh has meltdowns. Something frustrates him and he can't control his emotions.

"I sometimes end up screaming," he says. "And I end up yelling and screaming."

And hitting and banging things, throwing things, adds Strazh's mom, Natalie Dunnege. As a single parent, she bears the brunt of her son's outbursts, she says.

"He told me that I disgusted him," she says softly. "He tells me he hates me."

Dunnege puts all her spare money into therapy for Strazh. She says it helps a lot. But Dunnege herself is struggling, feeling depressed and overwhelmed. She decided to look for her own therapist.

"One of the things that I've really had to wrap my head around is that I can't change him," she explains. "I can only change how I handle the situation. And not that I would want to change who he is. He's a really good kid. But it's a lot to handle, especially as a single parent."

Natalie Dunnege and her son, Strazh, work on an art project at home in San Francisco. Her health insurance would cover therapy sessions to help with her depression, Dunnege says, but she hasn't been able to find a counselor who is taking new patients.

Sheraz Sadiq/KQED

Yet when Dunnege logged onto her insurance website, Anthem Blue Cross, to find a therapist, she realized her copay for a mental health visit was going to be upwards of $75 – even though her copay for other medical appointments was less.

"There's no way," Dunnege says. "It's out of my budget right now."

Dunnege lives in a one-bedroom apartment with her son and her father in San Francisco's Haight-Ashbury district. Dunnege says $75 a week for therapy is impossible, given her low income.

"I just made lower-middle income," she says. "Just by the skin of my teeth. So I just have to hold off until I'm actually middle class."

More than 43 million Americans suffer from depression, anxiety and other mental health conditions, according to the most recent federal data. But more than half the people who felt like they needed psychological help last year, never got it. Even people who had insurance complained of barriers to care. Some said they still couldn't afford it; some were embarrassed to ask for help. Others just couldn't get through the red tape.

Recent federal health laws — the 2008 Mental Health Parity Act and the Affordable Care Act — were supposed to fix this. They require health plans to provide benefits for mental health conditions on par with physical health conditions. Under the law, insurance companies can't charge higher copays or set up separate deductibles for mental health care, compared to other medical or surgical care. They can't limit hospital stays or require preauthorization for mental health treatment unless the same limits are applied to treatment for physical health conditions.

But the laws are complicated and many insurance companies have struggled to comply. In California, state regulators found that 24 of 25 insurance companies offered one or more plans that charged copays or co-insurance for mental health treatments that were higher than the copays or co-insurance required of other medical treatments, even though they are supposed to be the same. The state's department of managed health care is working with the plans to fix these unequal cost-sharing policies.

Anthem Blue Cross, Natalie Dunnege's plan, which charged a $75 copay for a mental health visit, is one of the insurers required to make fixes. In a statement, the company said it is working with regulators to comply with the mental health parity laws, and that it "is committed to providing access to high quality and affordable health care, including mental health care."

But some insurance companies are still finding ways to keep people who need care from getting it — sometimes through subtle, technically legally, ways of limiting treatment, says Keith Humphreys, a psychiatry professor at Stanford. He served as an advisor to Congress when it was developing the 2008 Mental Health Parity Act.

Natalie Dunnege encountered some of these barriers when she tried again to find a therapist. In the last year, she got a promotion at work and moved into a larger apartment. Now she has Blue Shield coverage, and her copay for a mental health appointment is only $20.

"Which I was really excited about," Dunnege says.

But when she looked for a therapist who would take her insurance, she struck out.

"I contacted six or seven," she says.

Only three called her back.

One was completely booked, she says. "The other two just didn't accept the insurance anymore."

Zero hits out of seven.

To find out if this was consistent with other people's experience or just a bad draw, I decided to conduct my own survey and called all the psychologists — 100 in total — that were listed on the Blue Shield website for Dunnege's plan in San Francisco.

Nearly a quarter of them never called back. Almost half said they weren't accepting new patients or weren't taking insurance anymore. That left 28 psychologists who actually had appointments. And only eight of them had slots available outside regular work hours. Eight out of 100.

"Sorry, I wish you the best of luck," was a common refrain in therapists' voicemail messages.

As for Natalie Dunnege: After seven rejections, she gave up looking.

"It's hard when you're feeling sad and you feel like you can barely keep things together," she says. "It just seemed like way too much at the time."

Mental health advocates, including Keith Humphreys, say limiting the number of therapists available to patients is actually a strategy for insurance companies.

"It's a way to control cost," he says. While insurers are now required to keep an adequate number of clinicians listed in their directories, he adds, they still find ways to sidestep the rules.

"You know, the law doesn't say you can't put people on there who are dead, or you can't put people on there who are not taking new patients," he says. "What that translates into, then, is people have to wait longer for care, which then cuts expenditures for the insurer and reduces access."

California passed a law that went into effect July 1 — SB 137 — that requires insurers to make sure their physician directories are more accurate. The law was passed mainly in response to consumer concerns around finding primary care physicians and specialists covered by new Affordable Care Act plans, so a lot of questions remain about how the law will be enforced, especially when it comes to mental health providers, who are largely self-employed, solo practitioners.

The insurance industry says it will be a challenge to comply with the new California law.

"When you have networks as large as ours and you have as many enrollees as we have here in California, you're not going to be able to just have everything accurate every single second of every single day," says Charles Bacchi, CEO of the California Association of Health Plans.

He said the industry is working to make it better.

"But we also need to be realistic," he says. "We don't run a mental health provider's office. They do. And how they handle people calling their offices is their job."

Blue Shield declined an interview. In a written statement, the company says it tries to make it easy for providers to update changes in their contact information and schedule.

"We understand that there are a number of issues that impact a provider's availability to take new patients, such as administrative limitations and fluctuating numbers of patients based on their individual needs," the statement reads. "When those instances arise, the provider is required to notify us so that patients have access to the most up-to-date information about who is available in their area."

The insurance industry also says it is facing another challenge: a nationwide shortage of mental health providers, further exacerbated by the millions of people who have signed up for insurance under the Affordable Care Act.

In California, there are "around 4 to 5 million more people with coverage — just in the last two years," Bacchi says. "And that's creating a strain for everybody — plans and mental health providers."

Meanwhile, people like Natalie Dunnege are toughing it out on their own.

This story is part of NPR's reporting partnership with KQED and Kaiser Health News.

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

Problems After Using Hair Conditioner Prompt An FDA Warning

Mon, 07/25/2016 - 12:43pm

Wen cleansing conditioners combine the functions of a shampoo and a conditioner. The FDA says it is investigating consumer complaints about the products.

Jesse Grant/WireImage for Kari Feinstein PR/Getty Images

Hair products aren't at the top of most people's health worry list, but the Food and Drug Administration is investigating a surprisingly high number of reports of problems after people used a particular cleansing conditioner.

As of July 7, the FDA had received 127 complaints of "hair loss, hair breakage, balding, itching, and rash" after people used Wen by Chaz Dean cleansing conditioner products — more reports than the agency has ever received for a cosmetic hair product.

"This kind of report is very rare," says Paradi Mirmirani, a dermatologist in Vallejo, Calif. "For the most part, shampoo products out there are all very safe." The agency's safety alert says it has not determined a possible cause for the problems reported.

Late last year, mediation began for a class-action lawsuit in California against Guthy-Renker, the company that markets and manufactures Wen.

The FDA doesn't approve cosmetics before they go on the market, though it does set upper limits for bacteria in cosmetics and hygiene products. Instead, says Linda Katz, director of the FDA's Office of Cosmetics and Colors, the agency monitors consumer complaints for many factors to decide whether to investigate a product.

In this case, the sheer number of complaints played a role in the decision. The agency says it is investigating more than 21,000 complaints reported to Chaz Dean Inc. and Guthy-Renker. (Gianna Cesa, a PR representative for Chaz Dean, says the company did not receive this number of complaints.)

Katz says she can't discuss any working hypotheses associated with the investigation, though she did say investigators have no reason to believe the product was contaminated with something foreign, like microbes. For now, the FDA is still gathering information. Officials will look at the product's quality testing and whether there have been any changes to how the product is made.

In an email, a spokesman for Chaz Dean said the company stands behind its products and that "the brand has consistently cooperated with the FDA and will continue to do so."

Dermatologists say hair care products can cause these sorts of symptoms. One common reason is allergy.

Shots - Health News Your Soap Has Bacteria In It, But It Still Gets You Clean

"There are thousands of ingredients that are in personal hair products," says Bruce Brod, a clinical professor of dermatology at the University of Pennsylvania. "While most people in the population won't react to them, there's a small subpopulation that will."

Common allergy triggers include surfactants, the ingredients in shampoos and conditioners that make them sudsy, as well as preservatives that increase shelf life and chemicals used to create fragrances.

These allergic reactions can occur regardless of whether a product is "all natural," says Mirmirani. "Lots of plants give people a reaction as well," she says, citing poison oak as an example. And because allergic reactions can take a while to occur, people may not immediately realize a hair product is causing issues.

But there are also causes of scalp problems that have nothing to do with cosmetics, says Nicole Rogers, an assistant clinical professor of dermatology at Tulane Medical School. For example, she says, male-pattern or female-pattern baldness are both common causes of hair loss. Or a patient could suffer from alopecia areata, a disease in which the immune system attacks hair follicles. She says she believes it's unlikely the consumers' complaints are tied to Wen.

Stress, changes in diet and pregnancy can cause hair loss as well, says Anthony Rossi, a dermatologist who serves as a consultant to Chaz Dean's PR firm.

That said, all the doctors told Shots that people with scalp problems should visit a dermatologist and discuss hair products, along with other possible factors. Doctors can do allergy tests on patients to analyze as many as 55 potential allergy triggers. It's important, says Brod, to look at all potential causes of symptoms, rather than looking at Internet chat rooms alone.

"Often, there's a suggestive herd effect," he says. "If somebody says, 'I'm using something and it itches my scalp,' the person next to him will say, 'You know what? Me too.' "

Katz of the FDA also urges people to visit doctors in addition to reporting complaints to the FDA. And if someone decides to switch from Wen to a different conditioner, Mirmirani says, "There's plenty more out there."

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

Should Doctors Game The Transplant Wait List To Help Their Patients?

Sun, 07/24/2016 - 5:00am

A chronic shortage of donor hearts places doctors in an ethical dilemma.

Hero Images/Getty Images

Imagine your heart can no longer pump enough blood to your vital organs. Even minimal exercise tires you out, and you're often short of breath when lying flat. Your lungs are accumulating fluid. Your kidneys and liver are impaired.

You've been hospitalized and started on an intravenous drug that improves your heart's ability to contract. It has helped, but it is not a long-term solution. You need a new heart.

You're a good candidate, but there is a problem: a chronic shortage of donor hearts. In 2014, for example, about 6,950 Americans were approved for heart transplants, but only about 2,250 donor hearts became available. You need to move higher up on the list.

I'm your doctor. I want to help you get you a heart. But I face an ethical dilemma: Do I ramp up your medical treatment, even beyond what I consider necessary, to bump you higher on the list?

Aiming for Status 1A

The United Network for Organ Sharing, or UNOS, has established criteria to make sure that donor hearts go to patients with the most severe disease. These criteria are based on which treatments a doctor has prescribed, on the assumption that they're a good indication of how critical the illness is.

Generally, that's a fair assumption. Except that the system itself creates a perverse incentive.

Shots - Health News Federal Standard May Be Thwarting Some Liver Transplant Patients

It works like this: Your place on the waiting list for hearts depends on your "status." If you weren't getting that IV drug, you'd be considered "Status 2," and your median wait time for a heart would be 630 days. Not good.

You're on the IV drug, though, so you're considered "Status 1." But "Status 1" is divided into two more categories: If you're on a low dose of the IV drug, you're classified as "1B," cutting your median wait to 301 days. That's where you are now. Better, but still not great.

But if you were in an intensive care unit, receiving a high dose of your IV drug, and you had a catheter placed in your pulmonary artery to monitor cardiac performance, you would be "Status 1A." Your median wait would drop to 110 days.

So you're unlikely to get a heart anytime soon unless you can be listed as 1A. And in your case, if you weren't up for a transplant, there would be no call to implant a pulmonary-artery catheter; it's uncomfortable (it is inserted through your neck or under your collarbone) and carries a risk of infection. There would also be no call to raise your dose of the IV drug that's helping your heart contract; when used long term, higher doses can increase the risk of sudden cardiac death.

But I have to balance these risks against the danger of your having to wait three times as long for a transplant if you remain 1B. That means spending an additional 291 days on the waiting list, during which your condition may deteriorate. You may end up needing a mechanical pump or an artificial heart, both of which would entail major cardiac surgery and potentially serious complications. And you may die.

When I take all that into account, the risks of keeping you waiting at 1B seem higher than the risks of placing a pulmonary-artery catheter and raising the dose of your IV medication to make you 1A.

This is the system I have to navigate.

So, as your doctor, even though these measures aren't medically indicated, do I admit you to intensive care, insert a pulmonary-artery catheter and increase your medication to qualify you for 1A status? And if I do, is it ethical?

The transplant list is a zero-sum game

The American Medical Association, in a statement on the allocation of limited medical resources, asserts that "a physician has a duty to do all that he or she can for the benefit of the individual patient."

And dishonesty on behalf of others can be virtuous. Ludvik Wolski, a Roman Catholic priest in Otwock, Poland, forged certificates of baptism to save the lives of Jewish children during the Nazi occupation.

If I adjust your treatment to help you get a donor heart, I might be tempted to believe I'm acting similarly.

But there is an important difference between Wolski's situation and mine: His actions had no adverse consequences for other Jewish children in the community.

In contrast, if I increase your odds, I decrease another patient's — because the transplant list, with its vast excess of prospective recipients over donors, is functionally a zero-sum game. If I've bettered your chances at someone else's expense, I've provided no overall benefit.

So I might be inclined to resist overtreating you here — if I can be confident that other doctors are resisting as well.

And there's the rub: If I have reason to believe that other doctors are escalating care to move their patients up on the list, then I may be putting you at a disadvantage by refusing to do the same.

And I do have reason to believe that. I've read a 2013 editorial in the Journal of Heart and Lung Transplantation commenting on how invasive treatments are being overused in patients on the transplant list. And a commentary this year in the same journal noted that when the criteria for transplant status changed, medical practice evolved in step with them. The authors, in fact, considered the possibility of setting up "tribunals" to assess this gaming.

So my personal integrity ends up being in direct conflict with my responsibility as your advocate.

In the big picture, this system increases the number of medically unnecessary treatments, thereby driving up both cost and complication risk.

And perhaps worst of all: When "gaming the system" goes from being an aberration to a standard strategy — when, as the authors of the new commentary write, "treating to the priority is almost as fundamental as studying to the test" — then dishonesty becomes normal.

This cannot be good.

New rules

The United Network for Organ Sharing is now considering a new system for allocating donor hearts that has many more priority stratifications.

Among the new criteria proposed for determining a patient's waitlist status are measures that are far more aggressive than pulmonary-artery catheters and IV drugs. They include procedures such as the insertion of an intra-aortic balloon pump, which helps the heart generate more blood flow, or the use of extracorporeal membrane oxygenation, which provides a heart-lung bypass outside the body.

Under the new criteria, we should be better able to select patients with the most severe disease.

But that's what we thought about the original criteria. And the new proposed criteria, too, are "gameable," so that doctors might feel pressured to take more extreme steps to improve their patient's chances. Some transplant doctors are already expressing concerns about the potential use of intra-aortic balloon pumps that will allow patients to walk about while waiting for transplants.

The same perverse incentive to escalate care will remain — and so will the ethical dilemma it creates.

Matthew Movsesian, a cardiologist, is a professor at the University of Utah School of Medicine in the Division of Cardiovascular Disease. This essay was first published by NPR member station WBUR.

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

Cosplayers Use Costume To Unleash Their Superpowers

Sat, 07/23/2016 - 5:00am

Leland Coleman of Nashville, Tenn., says Captain America was an inspiration to him over the past year as he lost 45 pounds and went off insulin. So he designed this Renaissance version of the character. The costume, he says, "gave me the strength. I feel like I've grown into it and become it. He and Becki Turner were among the attendees at AwesomeCon in Washington, D.C., in June.

Meredith Rizzo/NPR

"My name is Becki," says a young woman standing in a convention center turned comic book bazaar. Then she flips a mane of orange hair and launches into Scottish accent. "And today, I am Merida from Brave."

Becki Turner, a 28-year-old from Waldorf, Md., is at AwesomeCon in Washington, D.C., along with thousands of other attendees dressed in elaborate costumes. When she's not a fictional Scottish princess from a Disney movie, Turner says she's much more withdrawn. "I'm much less shy when I'm in cosplay. I don't have as much hangups as I do when I'm me, [like] a little bit of social anxiety."

She flares her green dress and brandishes a recurved bow with a grin on her face. "[Merida's] a strong, fierce, independent woman," Turner says. And today, so is she.

// Require.js is on the page (new Seamus) if (typeof requirejs !== 'undefined') { // Create a local require.js namespace var require_cosplay2_20160721 = requirejs.config({ context: 'cosplay2-20160721', paths: { 'pym': '', 'CarebotTracker': '//' }, shim: { 'pym': { exports: 'pym' } } }); // Load pym into locale namespace require_cosplay2_20160721(['require', 'pym', 'CarebotTracker'], function (require, Pym, CarebotTracker) { // Create pym parent var pymParent = new Pym.Parent( 'responsive-embed-cosplay2-20160721', '', {} ); // Unbind events when the page changes document.addEventListener('npr:pageUnload', function (e) { // Unbind *this* event once its run once, arguments.callee); // Pym versions with "remove" if (typeof pymParent.remove == 'function') { pymParent.remove(); // Pym version without "remove" } else { // Unbind pym events window.removeEventListener('message', pymParent._processMessage); window.removeEventListener('resize', pymParent._onResize); } // Explicitly unload pym library require_cosplay2_20160721.undef('pym'); require_cosplay2_20160721 = null; }) // Add Carebot linger time tracker var lingerTracker = new CarebotTracker.VisibilityTracker('responsive-embed-cosplay2-20160721', function(result) { pymParent.sendMessage('on-screen', result.bucket); }); // Add Carebot scroll depth tracker // var scrollTracker = new CarebotTracker.ScrollTracker('storytext', function(percent, seconds) { // pymParent.sendMessage('scroll-depth', JSON.stringify({ // percent: percent, // seconds: seconds // })); // }); }); // Require.js is not on the page, but jQuery is (old Seamus) } else if (typeof $ !== 'undefined' && typeof $.getScript === 'function') { // Load pym $.getScript('').done(function () { // Wait for page load $(function () { // Create pym parent var pymParent = new pym.Parent( 'responsive-embed-cosplay2-20160721', '', {} ); // Load carebot and add tracker // Separate from pym so that any failures do not affect loading // the actual graphic. $.getScript('').done(function () { // Add Carebot tracker var tracker = new CarebotTracker.VisibilityTracker('responsive-embed-cosplay2-20160721', function(result) { pymParent.sendMessage('on-screen', result.bucket); }); // Add Carebot scroll depth tracker // Uncomment on one graphic per story var scrollTracker = new CarebotTracker.ScrollTracker('storytext', function(percent, seconds) { pymParent.sendMessage('scroll-depth', JSON.stringify({ percent: percent, seconds: seconds })); }); }); }); }); // Neither require.js nor jQuery are on the page } else { console.error('Could not load cosplay2-20160721! Neither require.js nor jQuery are on the page.'); }

Costuming as science fiction or fantasy characters began at science fiction conventions in the United States back in the 60s and 70s. The first cosplayers wore outfits from Star Trek and Star Wars. But the practice has really grown. People wear costumes from comic books, anime, video games, movies and TV series. Think of a character from even a modestly popular science fiction or fantasy universe, and there's probably been someone who's masqueraded as that character. And there large subgroups of specialty cosplay like the "bronies:" men who dress up as ponies from My Little Pony.

Now cosplayers, a portmanteau of costume role players, regularly pack conventions in Japan, Europe and the U.S. For geeks, the convention offers a sanctuary where they can nerd out and meet their science fiction and fantasy brethren. For the cosplayers, that means sharing the experience of transforming themselves into someone, or something, else.

But for many, it's not a mere game of dress-up. The costumes they choose bring out something in them that's not usually visible. Ni'esha Wongus from Glen Burnie, Md., carries a 6-foot foam gun and wears a tight pleather bodysuit. "I am Fortune from Metal Gear Solid 2," she says. "I still consider myself an introvert. But once I got all the buckles and straps on and the gun and stood in front of the mirror for the first time? I fell in love with it. I feel like there's some strength, some confidence in me now because of this."

And for Leland Coleman of Nashville, Tenn., his costume symbolizes a physical transformation. Captain America was an inspiration to him over the past year as he lost 45 pounds and went off insulin. So he designed a Renaissance version of the Marvel Comics character. The costume, he says, "gave me the strength. I feel like I've grown into it and become it."

Jayson Brown of Sterling, Va., portrays Predator from the 1987 film. Brown has spent the past two years working on his costume, which includes a Predator ring that he wears even when he's not cosplaying. Brown's daughter Skyla Brown is dressed as the Queen of Hearts from Alice in Wonderland.

Meredith Rizzo/NPR

These cosplayers are invoking clothing's subtle sway over us. People have used clothing to subdue, seduce and entertain for millennia. In some outfits, people not only look different, but they feel different. Psychologists are trying to figure out how clothes can change our cognition and by how much. Adam Galinsky, a psychologist at Columbia Business School, spoke with NPR's Hanna Rosin for the podcast and show Invisibilia. Galinksy did a study where he asked participants to put on a white coat. He told some of the participants they were wearing a painter's smock, and others that they were in a doctor's coat.

Additional Information: The Secret Life Of Clothes

Do clothes have the power to transform us? The latest episode of the NPR podcast Invisibilia explores seven stories about how the clothes we wear affect us more than we think (though perhaps less than we hope).

Then he tested their attention and focus. The people who thought they were in the doctor's coat were much more attentive and focused than the ones wearing the painter's smock. On a detail-oriented test, the doctor's coat-wearing participants made 50 percent fewer errors. Galinksy thinks this is happening because when people put on the doctor's coat, they begin feeling more doctor-like. "They see doctors as being very careful, very detailed," Galinksy says. "The mechanism is about symbolic association. By putting on the clothing, it becomes who you are."

Almost any attire carrying some kind of significance seems to have this effect, tailored to the article as a symbol. In one study, people wearing counterfeit sunglasses were more likely lie and cheat than those wearing authentic brands, as if the fakes gave the wearers a plus to cunning. "If the object has been imbued with some meaning, we pick it up, we activate it. We wear it, and we get it on us," says Abraham Rutchick, a psychologist at California State University Northridge.

In Rutchick's studies, he has found that people wearing more formal clothing like they would wear to a job interview thought more abstractly and were more big-picture oriented than people in casual wear. For example, those in formal clothing would say that locking the door was more like securing a house, an abstract concept, than turning a key, a mechanical detail.

The effect from clothing is probably twofold, Rutchick says. "When I gear up in those things, I will feel a certain way," Rutchick says. Then, he says, "I [also] feel how people are perceiving me, and that's going to change how I act and how I think about myself."

// Require.js is on the page (new Seamus) if (typeof requirejs !== 'undefined') { // Create a local require.js namespace var require_sound_hovercraft_20160721 = requirejs.config({ context: 'sound-hovercraft-20160721', paths: { 'pym': '', 'CarebotTracker': '//' }, shim: { 'pym': { exports: 'pym' } } }); // Load pym into locale namespace require_sound_hovercraft_20160721(['require', 'pym', 'CarebotTracker'], function (require, Pym, CarebotTracker) { // Create pym parent var pymParent = new Pym.Parent( 'responsive-embed-sound-hovercraft-20160721', '', {} ); // Unbind events when the page changes document.addEventListener('npr:pageUnload', function (e) { // Unbind *this* event once its run once, arguments.callee); // Pym versions with "remove" if (typeof pymParent.remove == 'function') { pymParent.remove(); // Pym version without "remove" } else { // Unbind pym events window.removeEventListener('message', pymParent._processMessage); window.removeEventListener('resize', pymParent._onResize); } // Explicitly unload pym library require_sound_hovercraft_20160721.undef('pym'); require_sound_hovercraft_20160721 = null; }) // Add Carebot linger time tracker var lingerTracker = new CarebotTracker.VisibilityTracker('responsive-embed-sound-hovercraft-20160721', function(result) { pymParent.sendMessage('on-screen', result.bucket); }); // Add Carebot scroll depth tracker // var scrollTracker = new CarebotTracker.ScrollTracker('storytext', function(percent, seconds) { // pymParent.sendMessage('scroll-depth', JSON.stringify({ // percent: percent, // seconds: seconds // })); // }); }); // Require.js is not on the page, but jQuery is (old Seamus) } else if (typeof $ !== 'undefined' && typeof $.getScript === 'function') { // Load pym $.getScript('').done(function () { // Wait for page load $(function () { // Create pym parent var pymParent = new pym.Parent( 'responsive-embed-sound-hovercraft-20160721', '', {} ); // Load carebot and add tracker // Separate from pym so that any failures do not affect loading // the actual graphic. $.getScript('').done(function () { // Add Carebot tracker var tracker = new CarebotTracker.VisibilityTracker('responsive-embed-sound-hovercraft-20160721', function(result) { pymParent.sendMessage('on-screen', result.bucket); }); // Add Carebot scroll depth tracker // Uncomment on one graphic per story // var scrollTracker = new CarebotTracker.ScrollTracker('storytext', function(percent, seconds) { // pymParent.sendMessage('scroll-depth', JSON.stringify({ // percent: percent, // seconds: seconds // })); // }); }); }); }); // Neither require.js nor jQuery are on the page } else { console.error('Could not load sound-hovercraft-20160721! Neither require.js nor jQuery are on the page.'); }

The effect of that feedback is obvious in the cosplay convention atmosphere, where people rush to compliment one another on costumes and take photos.

Riki LeCotey, a well-known cosplayer from Atlanta who goes by the stage name Riddle, says that the power she finds in cosplay is both from the costume and from people's reactions. "Someone is like, you're a perfect Black Cat [a character from Spiderman]. So you're like, 'Oh they think I'm sexy. I feel sexy in the costume. Maybe I am sexy,' " she says.

And those feelings linger after the con, LeCotey says. "When you take the costume off, you kind of remember. Or you look at photos and it reminds you. If you keep doing it over and over again, it just stays with you. It's like a muscle memory – of sexiness." LeCotey says cosplaying has helped her become far more confident than the shy teenager she was 17 years ago when she started.

At a fundamental level, LeCotey says, "[cosplaying] is about embodying the characters you love." For her, that means choosing characters that she identifies with because of a similar history or an attribute that she admires. About a quarter of cosplayers would agree with her, saying they choose their characters because of psychological traits or their narratives, based on a survey done in The Journal of Cult Media.

The clothing is a conduit to those traits, but it doesn't always need to be elaborate. "Like today, I woke up, and I wanted to wear something like Black Widow," says Jennifer Breedon, an AwesomeCon attendee from Washington, D.C. She's dressed in a leather jacket, black tights and combat boots. It's not Natasha Romanova's leather catsuit, and there's no S.H.I.E.L.D. patch to identify the Marvel Comics hero. Still, it works for Breedon. "And today, I'm channeling that character, that person, that part of me that feels that affinity with them."

She calls it a subtler cosplay, choosing characters who tend to wear simpler or street casual outfits. "Even if it's under the radar, even if nobody notices it. I know what it is," she says.

// Require.js is on the page (new Seamus) if (typeof requirejs !== 'undefined') { // Create a local require.js namespace var require_cosplay_20160721 = requirejs.config({ context: 'cosplay-20160721', paths: { 'pym': '', 'CarebotTracker': '//' }, shim: { 'pym': { exports: 'pym' } } }); // Load pym into locale namespace require_cosplay_20160721(['require', 'pym', 'CarebotTracker'], function (require, Pym, CarebotTracker) { // Create pym parent var pymParent = new Pym.Parent( 'responsive-embed-cosplay-20160721', '', {} ); // Unbind events when the page changes document.addEventListener('npr:pageUnload', function (e) { // Unbind *this* event once its run once, arguments.callee); // Pym versions with "remove" if (typeof pymParent.remove == 'function') { pymParent.remove(); // Pym version without "remove" } else { // Unbind pym events window.removeEventListener('message', pymParent._processMessage); window.removeEventListener('resize', pymParent._onResize); } // Explicitly unload pym library require_cosplay_20160721.undef('pym'); require_cosplay_20160721 = null; }) // Add Carebot linger time tracker var lingerTracker = new CarebotTracker.VisibilityTracker('responsive-embed-cosplay-20160721', function(result) { pymParent.sendMessage('on-screen', result.bucket); }); // Add Carebot scroll depth tracker // var scrollTracker = new CarebotTracker.ScrollTracker('storytext', function(percent, seconds) { // pymParent.sendMessage('scroll-depth', JSON.stringify({ // percent: percent, // seconds: seconds // })); // }); }); // Require.js is not on the page, but jQuery is (old Seamus) } else if (typeof $ !== 'undefined' && typeof $.getScript === 'function') { // Load pym $.getScript('').done(function () { // Wait for page load $(function () { // Create pym parent var pymParent = new pym.Parent( 'responsive-embed-cosplay-20160721', '', {} ); // Load carebot and add tracker // Separate from pym so that any failures do not affect loading // the actual graphic. $.getScript('').done(function () { // Add Carebot tracker var tracker = new CarebotTracker.VisibilityTracker('responsive-embed-cosplay-20160721', function(result) { pymParent.sendMessage('on-screen', result.bucket); }); // Add Carebot scroll depth tracker // Uncomment on one graphic per story // var scrollTracker = new CarebotTracker.ScrollTracker('storytext', function(percent, seconds) { // pymParent.sendMessage('scroll-depth', JSON.stringify({ // percent: percent, // seconds: seconds // })); // }); }); }); }); // Neither require.js nor jQuery are on the page } else { console.error('Could not load cosplay-20160721! Neither require.js nor jQuery are on the page.'); }

The costumes can be barely noticeable – say, the grey hoodie, jeans and boots of another Marvel Comics hero, Jessica Jones. But Breeden says that at a terrible moment, when she was alone and defeated, these clothes helped her draw the strength to move forward.

Breedon, now 32, says that a decade ago she felt like a failure. She struggled with an eating disorder, drug abuse and one serious suicide attempt. And along the way, "I hurt a lot of people." She says that in the years since rehab, her life and health has felt precarious. "Even today, there's an underlying shame, and I need to work through it every single day."

She worked her way through law school, graduated and got a job. It felt like a huge achievement; she told everybody. Then they canned her a few months later, saying it wasn't a good fit. She spiraled into a depression, thinking, "I'll never be good enough."

Subscribe to Invisibilia

For three days, Breedon says, she sat alone in her apartment, re-watching Jessica Jones. She made a point of dressing just like Jessica, in her grey hoodie. "I had to be Jessica," she says. "The hoodie gave me purpose. Jessica Jones is always like, 'I don't want to work for your law firm or S.H.I.E.L.D. or whatever.' She had to do her own thing. It made me think, 'Maybe I'm not meant to work for this organization.' I just felt at peace."

Breedon moved on. She got a job working as an attorney and human rights analyst that she loves. She says she gets to help people, just like her heroes. And when she finds herself in need of toughness, she has their talismans, the hoodie, the leather pants, the boots, waiting in her closet.

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

Miami Steps Up Mosquito Control Efforts After Suspected Zika Cases

Fri, 07/22/2016 - 6:35pm
Miami Steps Up Mosquito Control Efforts After Suspected Zika Cases Listen · 3:45 3:45 Toggle more options
  • Download
  • Embed Embed "> <iframe src="" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
  • Transcript
July 22, 20166:35 PM ET Heard on All Things Considered

Larry Smart, a Miami-Dade County mosquito control inspector, uses a fogger to spray pesticide to kill mosquitoes in an effort to stop a possible Zika outbreak in Miami.

Joe Raedle/Getty Images

In a well-kept neighborhood in Miami with lush gardens, Larry Smart, a county mosquito control inspector, holds a turkey baster up to the light. "If you look closely, you'll see some moving fast. They're wriggling around," he says. "That's actually mosquito larvae." Smart uses the turkey baster to sample standing water in hard-to-reach places.

Florida is home to dozens of mosquito species, but the one officials are most concerned about now is Aedes aegypti, the main species that carries the Zika virus. These mosquitoes typically live near people and can breed in as little as a teaspoonful of stagnant water.

Health officials are worried that Zika may have a foothold in South Florida. They're investigating two cases of Zika that may have been contracted from mosquitoes in Florida, not by people traveling abroad.

At this Miami home, Smart found mosquito larvae in water held in the leaves of a bromeliad, a flowering plant common in South Florida yards.

Mosquitoes like to breed in the pooled water in plants like this bromeliad.

Joe Raedle/Getty Images

"They'll breed in there and become adults," he says. "A lot of people don't realize that a plant like that is renowned for mosquitoes."

With a handheld fogging machine, Smart mists the foliage with an insecticide. He also drops pellets that kill mosquito larvae into the plant. Officials say going door-to-door and spraying by hand is the most efficient way to stop the Aedes aegypti mosquito and the spread of Zika.

Over the past week, Miami's mosquito control activity has been focused on one particular neighborhood. It's near the home of a person health officials say may have contracted Zika locally from a Florida mosquito. There are actually two cases of suspected local transmission now, one in Miami and one just north in Florida's Broward County. But Lilian Rivera, the head of Miami-Dade County's Health Department, says there are few details she can share.

"We are in an active investigation stage, not only in Miami but also in Broward," she says. Her message for the media and the public? "Just to have patience."

Florida's Department of Health is working with the Centers for Disease Control and Prevention to rule out other ways the two individuals could have contracted Zika, such as through travel or sexual transmission. The department is also trapping mosquitoes and testing them for the Zika virus. So far, none have come back positive. Miami took similar measures in 2010 when the city saw a number of dengue cases. Because it can cause birth defects including microcephaly, Zika is even more worrying.

Miami's head of mosquito control, Chalmers Vasquez, says he really wasn't surprised when health officials began investigating a possible locally acquired Zika case, because of the city's close contacts with the Caribbean and Latin America. He says: "The virus is flowing through Miami International Airport every day. There are thousands and thousands of people coming back into our area from those countries that may be affected, they may not be."

Vasquez says, "We're trying to be as aggressive as possible."

Officials in Florida are concerned about how much the Zika response will cost. This week, the White House announced it was sending $60 million in Zika funding to the states, including $5.6 million for Florida.

Much more will be needed, says Peter Hotez, dean of the National School of Tropical Medicine at the Baylor College of Medicine. He's concerned Zika may already be established in mosquitoes in Florida, Texas and other states along the Gulf Coast. But so far, funds haven't been made available for intensive testing and surveillance.

"You have to have teams of people going into affected communities, community health centers, asking about fever and rash, and then taking a blood sample and testing it," Hotez says. "That requires some resources and it's not being done. I'm worried that we could be seeing quite a bit of Zika happening now. It's just that no one's looking."

The Obama administration is asking Congress for $1.9 billion to fund the fight against Zika, so far without success. And, at the height of mosquito season on the Gulf Coast, Congress has adjourned until after Labor Day.

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

A Cast With Down Syndrome Brings Fresh Reality To Reality TV

Fri, 07/22/2016 - 4:32pm
A Cast With Down Syndrome Brings Fresh Reality To Reality TV Listen · 4:38 4:38 Toggle more options
  • Download
  • Embed Embed "> <iframe src="" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
  • Transcript
July 22, 20164:32 PM ET Heard on All Things Considered

Born This Way is produced by Jonathan Murray, the co-creator of MTV's Real World. Above, cast members Cristina Sanz (left), Rachel Osterbach, Steven Clark and Sean McElwee (top).

Adam Taylor/A&E

Born This Way is a reality show — not too different from The Real World, the groundbreaking show that helped define the genre and aired for more than 30 seasons on MTV. Both feature a cast of diverse young adults navigating the world around them. Both came from reality TV pioneer Jonathan Murray (who co-created The Real World with Mary-Ellis Bunim). The big difference: All the stars of Born This Way have Down syndrome.

"It was challenging to cast this show," Murray told me recently from Bunim/Murray Productions in Van Nuys, Calif., as he readied for the launch of the second season on July 26. "Sometimes our cast members — it takes them a little struggle to get their thoughts out."

Murray had no personal connection to the Down syndrome community when he first came up with the concept of the show. He says he's always been committed to bringing underrepresented communities to the screen, stretching back to when The Real World featured a gay, HIV-positive character in the 1990s.

"I always felt that we grew up in our own little segmented worlds," he said, adding that television provides a chance to break down those walls.

That said, reality TV relies on conventions, and Born This Way follows plenty of them. The cast includes a musician, a party girl, a self-styled player and a drama queen. Rachel Osterbach is the 33-year-old sweetheart. She wears her red hair in a 1960s-style flip and was recruited for Born This Way at a drama class for people with Down syndrome.

"I actually cried from happiness," she said about being cast, "because I always wanted to be on TV. Because I wanted to be like the regular people on TV."

The A&E docu-series Born This Way was recently nominated for three Emmys. Sean McElwee (left) Megan Bomgaars, Rachel Osterbach and John Tucker star in the second season which premieres July 26.

Adan Taylor/A&E

Osterbachs' parents, Laurie and Gary, said they never really believed their family would end up onscreen. The family lives in Orange County, Calif. When they got picked, they were concerned, because Bunim/Murray Productions also makes Keeping Up With the Kardashians.

"We knew they were experienced," Gary Osterbach said wryly. "But when you're experienced in shows like the Kardashians — that doesn't necessarily make you feel like your daughter is going to come off great."

But Rachel Osterbach does come off great. So does the rest of the cast. Born This Way has been an unexpected hit for A&E. Over its first season, the show enjoyed more than an 80 percent rise in viewership. Other reality stars could learn much from this cast about handling conflict.

There's lots of hugging and forgiving. And when alcohol appears, it's not hurled during catfights. It's sipped responsibly during family dinners or among parents discussing how to handle their adult childrens' transition to independent living. (Cast members during the first season were ages 22 to 32.)

I learned about Born This Way from a reality TV producer who told me it has a dedicated following in the reality television community. (Yes, that's a real thing.) Jonathan Murray thinks that might be because the show demands a delicate touch that's uncommon in the genre.

Generally in reality TV, Murray said, "you don't get to play the small moments as much as I would like to. It has to be big and loud, and someone needs to flip a table at the end of Act One."

On this show, you see Rachel Osterbach doing her best to find love, and getting repeatedly turned down.

"That was the toughest part," said Gary Osterbach. "To watch on TV and know that there's now approximately 1 million people also watching your daughter get rejected."

"Twice," interjected Rachel's mom, Laurie.

"I don't like being rejected on film," Rachel said firmly. "At first, I didn't want that in there because I hate being let down."

"But it was OK, you said, right?" Laurie asked.

"It was OK, but I don't like being rejected," Rachel replied.

In a way, this is progress, said disability advocate David Perry. He's not generally the biggest fan of reality shows, he said, but he appreciates how Born This Way holds people with Down syndrome to the same standards as other reality stars.

"I like seeing struggle," he said. "I like seeing young adults with Down syndrome struggling with questions that young adults struggle with."

Perry's 9-year-old son has Down syndrome. Too often, Perry said, people with Down Syndrome are represented on TV as childlike innocents.

"Or it can be kind of angelic," Perry added. "There's a whole tradition of people with Down syndrome being angels on earth, being specially chosen by God, living without sin."

But Born This Way features complex characters; they're among the less than 1 percent of TV characters with disabilities, according to a recent survey by GLAAD. They're also among the first generations of people with Down syndrome who have benefited from such broad social changes as mainstreaming and the Americans with Disabilities Act.

Additional Information: Related NPR Stories Special Needs Teacher Comes To The Rescue On Flight Listen · 3:56 3:56 Toggle more options
  • Download
  • Embed Embed "> <iframe src="" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
  • Transcript
Shots - Health News Only Human: A Birth That Launched The Search For A Down Syndrome Test StoryCorps A Mom, A Son With Down Syndrome — And The Love That Made A 'Curse' A Gift Children's Health A Daughter With Down Syndrome Is The Perfect Sister

"Everything started to change in the late '70s, early '80s," observed Gary Osterbach, of the progress his daughter has enjoyed. "She's been in early intervention [programs] since she was a month old. If she'd been born, probably five years before that, none of that would have existed. People paved the path for us before we were there."

And the Osterbachs take pride in continuing that path by showing their family to a wide audience.

"I didn't think we'd get the acceptance like we did," Laurie Osterbach said softly. "And that's what I hoped by doing this — besides them just seeing how sweet Rachel is."

"Thank you, Mom," Rachel Osterbach piped up.

The sweetness — and the real drama — of Born This Way is getting acclaim outside the disability and reality communities. The show was recently nominated for three Emmys.

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

Invisibilia: The Unbearable Lightness Of Footwear

Fri, 07/22/2016 - 1:57pm
Isabel Seliger for NPR

Editor's note: This is an excerpt from the latest episode of the Invisibilia podcast and program, which is broadcast on participating public radio stations.

Walking among the California redwoods, drifting blank-brained on a break from college, I got to thinking about shoes. I can't say why, exactly. Perhaps it was because they were touching my feet.

My own shoes were performing admirably, I must admit. I was trudging on mud and bugs and roots and who knows what without feeling much of anything.

Additional Information: The Secret Emotional Life Of Clothes

Do clothes have the power to transform us? The latest episode of the NPR podcast Invisibilia explores seven stories about how the clothes we wear affect us more than we think (though perhaps less than we hope).

Subscribe to Invisibilia

And that, I realized in a flash, was a problem. Not that I had been stepping on gross stuff and snuffing out the lives of little things that, frankly, may not have deserved it. The problem was that I really couldn't tell.

Life and death and dog poop — it all basically felt the same underfoot.

I began thinking about the festering evil behind pollution, behind climate change, callousness and all the other ways we forget to consider each other and the world around us. Maybe shoes are to blame.

I realize this idea is so simple it could be taken for stupid. Bear with me for a moment.

When we invented footwear — probably some 40,000 years ago, according to paleoanthropologists — we also slipped a surface between ourselves and the world. Where we once were touching the ground with skin, touching all the time like lovers, shoes changed all this. With shoes, we swapped intimacy for a well-regulated separation.

Perhaps the moment at which we began walking only on objects of our own construction was the same moment we convinced ourselves that the world is of our own making. With shoes came pride, forgetfulness. Maybe Adam never even had to eat the apple at all. Maybe all he had to do was slip into a fresh pair of loafers.

It's a discovery I didn't know what to do with. And I still don't, to be honest — despite the years since, which I thought would make me smarter. But at the time, it felt as if a grand symbolic gesture was in order.

Isabel Seliger for NPR

I unlaced that faithful shoe of mine. I wiggled out of it, wadded my sock inside, cocked my arm behind my head in a pose I was sure looked heroic. With the great weight of all the world's dashed dreams on my shoulders I threw that shoe, that sad proof of all we've lost, as hard as I could, as far as I could.

It might have flown for miles — if it hadn't hit the tree right in front of me. The shoe gave out a defeated plop. The tree's trunk tossed off a few splinters. I know, because when I put it back on a few minutes later, I could feel them, wedged deeply in the sole.

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

Invisibilia: Do His Sunglasses Keep Him From Seeing The Light?

Fri, 07/22/2016 - 3:00am

1 of 9

View slideshow i

Editor's note: This story is part of the latest episode of NPR's show and podcast Invisibilia, exploring the power of clothes.

When he was in middle school, something happened to Casanova Frankenstein that happens to a lot of kids. On the bus home from school, another boy started making fun of him. As soon as they got off the bus, the kid sucker punched him right in the face. Frankenstein dragged himself home through the snow and crawled into bed. When his mom came into the room later that night, instead of comforting him, she said, "If you ever come into this house again and you lose a fight, I'm gonna get you. You hear me?"

Additional Information: Listen To The Episode

Winning those fights wasn't going to be easy. In the early '80s, Frankenstein was a kid trying to make it through school on the South Side of Chicago. He didn't play sports. And he had what he thought was as an incriminatingly dorky birth name: Albert Melvin Frank III. And he wore glasses — glasses that framed cartoonishly sweet puppy-dog eyes. So given his limited options, he decided he would turn to clothes to save himself.

We often think the shirts or shoes or accessories we put on every morning will make us cooler, or more confident or more professional. And sometimes we are right. But sometimes the clothes change us in ways we don't expect, or may not even want.

In Frankenstein's case, he desperately wanted the clothes to make him someone the other kids wouldn't pick on. He tried a pair of motorcycle boots, a pair of trendy Air Jordan sneakers, even a varsity letter jacket. After watching a movie about an Army-jacket-wearing kid whose classmates thought he was a psychopath, he dug up his dad's old Army jacket and wore that to school, too.

But none of these worked. "If you grow up in the South Side of Chicago, the last thing you're worried about is a Vietnam vet," he says. "You just look like you're broke."

And then one day while shopping for new glasses, Frankenstein noticed a pair of large tinted frames in the display case. They went from dark magenta at the top to warm pink at the bottom. And he wondered: Could these be the answer? "In the black community, guys that wore sunglasses, man, they were sharp! They were cool!" he recalls.

A few days later, he showed up at school wearing the glasses, and as he walked through the hallways, he heard something new. "Cool glasses!" "Cool glasses!" "Man those are cool glasses!" "How come they're letting you wear glasses at school?"

He told everyone they were tinted prescription glasses. And just like that, the bullying miraculously ended. Usually it doesn't work this way. Usually we discover a hard limit to the power of clothing. But for some reason in his case, all of the tripping, all of the textbook slapping, all of the hiding of clothes in the locker room and spitballing — it just stopped. With those tinted frames hiding his eyes, he says, "I was like a ghost almost. And I know that sounds strange, but it was like people did not really notice me."

Problem solved. But maybe problem solved too well?

Casanova Frankenstein started wearing dark glasses as a defense against bullies. That was decades ago. But he's still wearing them.

Courtesy of Casanova Frankenstein/Flickr

Frankenstein is 48 now, and a lot has changed since high school. He has tattoos. He's changed his name to Casanova Frankenstein, Cass for short. He's an artist who had a somewhat popular underground comic in the 1990s. And for many years, his day job was working as a custodian for the University of Texas in Austin. But what hasn't changed in all of these years is the sunglasses. He has an impressive collection hanging by his bed.

"I wear them when I'm lying down in bed — yeah, everywhere."

He wears them whether he's outdoors, whether he's indoors, whether at the grocery store or going on a date — at times even during sex. Frankenstein is that guy. He wears the sunglasses all day and all night.

But he doesn't care what people think because he genuinely believes that sunglasses have a kind of magical power. He's even tried to quantify just why they work so well, writing a paper on the effects of wearing sunglasses after dark where he tells his story and speculates on how sunglasses might help protect bullied kids.

It's a careful layman's parsing of how wearing sunglasses changes the emotional dynamics of a situation. He explains, for example, how "by avoiding pack placement, you tend to avoid male conflict and contests of aggression." Or how shielding the eyes can provide cover to people who need it. "You can't see a person cry if [they are] wearing dark glasses," he points out.

He says it's "like being able to look at the world through a telescope or from behind a wall."

But the sunglasses might also keep Frankenstein from seeing things he really might like to see. Two years into his second marriage, he didn't remember that his wife, Beth, had blue eyes, not brown. Which raises the question: Is there anything about wearing sunglasses that Frankenstein, in his conviction, can't really see?

Subscribe to Invisibilia

Beth Wiley, now his ex-wife, says that during her marriage to Frankenstein she had this saying: "The world is only as dark as the sunglasses you see it through." Constantly wearing sunglasses gave Frankenstein a darker view of the world, she thinks. The sunglasses made strangers and even her friends more standoffish toward Frankenstein, and that, in turn, made him see more of the negatives in others. "I just felt like I spent a lot of the relationship preparing for people to be assholes," says Wiley.

Kristen Bunyard, Frankenstein's close friend of 20 years, agrees that the sunglasses sometimes function as a wall. "It's hard to have a conversation with someone for several hours and you can never really see their eyes," she says.

So perhaps the sunglasses are imprisoning him in a brutal high school version of the world and obscuring the truth, which is that grownups are generally nicer than kids?

"I mean at the risk of sounding rude or insensitive, nobody's bullying a 50-year-old guy, especially not in Austin," Bunyard responded. "And I think that the majority of people he surrounds himself with are all people he loves and who love him. And he is safe with all of us. I wish he felt like he could take them off."

Back in his apartment, safe from the outside world, Frankenstein disagreed with these ideas. "The only reason why they want to see my eyes is to see if I'm lying to them," he says. "I'll take my glasses off and then I'll talk to you, and see if there's any difference."

Frankenstein placed the sunglasses carefully on the bed. Suddenly there was a transformation. His fluttering brown eyes were rimmed with curly eyelashes. The man who just a moment ago was so sure of himself now looked naked and vulnerable. Even his voice had changed. "As I said, I get kind of flustered when I'm not wearing sunglasses, don't know exactly what to say because my shield is down," he says. "So it's a matter of their comfort over my comfort."

He talked for 30 more minutes without the sunglasses on and then the interview ended. Frankenstein put the glasses back on and once again, everything changed. He was back to cracking jokes, dancing, even singing. "Heavens, I love the dark. I adore the darkness!"

With his glasses on, he stood outside his front door and he seemed prepared, excited even, to venture out.

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

Invisibilia: How A Shirt Collar Helped A Man Survive Auschwitz

Thu, 07/21/2016 - 4:39pm
Invisibilia: How A Shirt Collar Helped A Man Survive Auschwitz Listen · 7:24 7:24 Toggle more options
  • Download
  • Embed Embed "> <iframe src="" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
  • Transcript
July 21, 20164:39 PM ET Heard on All Things Considered

When you got up this morning, did you dress for the weather? Your wife? Throw on your lucky socks?

NPR's show and podcast Invisibilia has been taking a long look at what we wear — from sunglasses to artist's frocks and hoodies — and asking how much our clothes affect us, sometimes in ways we're not aware of, or might not even like.

There's the tale of tailor Martin Greenfield, who has dressed the last three presidents as well as NBA players and Hollywood stars. But his first realization of how clothes convey power came from a much darker place — the Auschwitz concentration camp. There, Greenfield started wearing a castoff Nazi shirt under his prison uniform. And that white collar somehow preserved his dignity. "I was different," Greenfield says. "I was different all the way through."

We'll also ask whether a man who started wearing sunglasses all the time to fend off high school bullies wound up unintentionally creating a wall between him and his loved ones by still wearing sunglasses decades later.

And we contemplate whether shoes keep us from properly considering the world around us, and each other.

This weekend in NPR's health blog, Shots, we'll explore how cosplayers use elaborate costumes to bring out their hidden strengths and find community. Join us on the air and online!

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

Psychotherapy Helps People Tune Out The Din Of Tinnitus

Thu, 07/21/2016 - 12:36pm

About 2 million Americans experience unbearable tinnitus.

Meriel Jane Waissman/Getty Images

About three years ago, a high-pitched "eeeeeeeee" sound started ringing in Linda Gray's ears. Sometimes, the ring would suddenly turn into a roar, sending Gray into panic mode. Her heart would speed up. She'd try to find a quiet room. "You're trying to escape it. It's like, 'Turn this off!' " she says.

A lot of people experience ringing, roaring or buzzing, also known as tinnitus. It can be maddening.

"It consumed me, it really did," says Gray, a childbirth educator living in Ohio. "I avoided talking on the phone, I avoided any social situation because it was so bothersome," she says. She stopped working for months.

Doctors writing Thursday in the journal JAMA Otolaryngology-Head & Neck Surgery found that about 1 in 10 U.S. adults reported experiencing tinnitus within the past year. And, surprisingly, very few of them talked with their doctors about one of the few methods known to help with it.

"Tinnitus is intimately tied to hearing loss," says Harrison Lin, an ear surgeon at the University of California, Irvine Medical Center and an author on the report. When a person loses the ability to hear a certain range of sound, their brain might chime in with its own iteration, like a soldier who can still feel pain in a limb they've lost.

"You hear a sound — a buzzing, a hissing or a tone — and no one else hears it. It's generated by something in your brain," says Lin.

Looking at a national survey of more than 75,000 people, Lin and his colleagues found that about a quarter said they'd experienced symptoms for more than 15 years. Over a third said their symptoms were nearly constant. According to the U.S. Department of Veterans Affairs, more than a million veterans get disability payments for tinnitus.

Health Tinnitus: Why Won't My Ears Stop Ringing?

For a lot of people, tinnitus is minor enough that they don't consider it a problem. But in cases where the sensation is intolerable, it's connected with anxiety, depression and lower quality of life.

Lin says one way to counteract it is to get hearing aids, so that the brain stops trying to compensate for the silence. The other thing known to help with tinnitus sounds a little odd coming out of a surgeon's mouth — psychotherapy.

"Cognitive behavioral therapy is widely accepted and promoted by our national professional society, but very few people know about it," says Lin. "It's about converting the way in which you think about tinnitus from negative emotions and trains of thought to more positive trains of thought."

For example, Lin says, a patient might be limiting their activities because of negative thoughts around their tinnitus. The therapy would help them take the bad thought, like "My tinnitus is very bad today, and I won't enjoy going out to dinner with my spouse, so I won't go," and turn it into a good one, like "I have tinnitus, and it may be distracting at times, but I will likely enjoy spending time with my spouse, delight in the meal and have an otherwise great evening."

Participants also learn relaxation techniques, how to manage sleep better, and ways to reduce their fear about encountering unpleasant sounds.

Despite studies showing the effectiveness of behavioral therapy, doctors rarely bring it up with patients. According to the survey Lin studied, about 0.2 percent of respondents with tinnitus had talked about it with their doctors.

Jennifer Gans, a psychologist with a private practice in San Francisco, is pushing for another form of therapy for tinnitus patients, mindfulness. The evidence for its effectiveness is a lot harder to come by than for cognitive behavioral therapy, but it operates on the same assumption — that changing a person's attitude about their affliction can minimize its impact on their life.

After learning about how mindfulness could help people with chronic pain, Gans decided to apply the method to tinnitus. She now has an online course in stress reduction to help people cope with the infuriating sounds.

"There's this great quote that 'Pain in life is inevitable, but suffering is optional,' and it really stands true," she says.

Gans asks participants to meditate for half an hour every day, learning to live with the tinnitus rather than harping on it as a burden. In the first lesson, she asks participants to pick up a raisin and focus on each detail — the texture, the sound of it rolling between two fingers, the look, taste, smell. She even asks people to notice the feeling of being "one raisin heavier" after eating it.

The idea is to help people learn to control their focus and their stress so that when something out of their control happens, like a loud ringing in their head, they can keep calm and get on with their daily life.

She says some people initially say, "No way, I'm not into that mumbo-jumbo stuff." But when all else fails, they tend to come around.

Linda Gray, who eventually took Gans' course, was initially among the skeptical.

"I'd done hearing aids, acupuncture, massage, tinnitus retraining therapy, and there was nothing else left," she says. She doubted that an online course involving a yoga mat would do much to help. But, she says, "I had to get on with my life. I couldn't just sit in my bedroom listening to white noise for days or weeks at a time.

"I'd still prefer it to be gone. As we're talking now, I can hear it," she says. But, she says, "I have some tools now to cope with it, rather than panic."

Though few studies have shown the effectiveness of mindfulness for tinnitus patients, a few studies have shown that combining mindfulness with cognitive behavioral therapy can reduce the negative psychological impact of chronic tinnitus.

Lin and his colleagues at UC Irvine have created their own eight-week online course in cognitive behavioral therapy. They're now enrolling patients at the medical center in a trial to understand how much it helps improve their quality of life.

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

Turning Down The Background Noise Could Help Toddlers Learn

Thu, 07/21/2016 - 12:19pm

Earlier studies have found that children who grow up in houses with a TV on many hours a day learn fewer words than children in households with less TV time.

Heleen Sitter/Getty Images

Toddlers make their fair share of noise. But they also have a lot of noise to contend with — a television blaring, siblings squabbling, a car radio blasting, grownups talking.

Amid all that clatter, toddlers must somehow piece together the meanings of individual words and start to form their own words and sentences.

Loud background noise may make it harder for toddlers to learn language, according to a study published Thursday in the journal Child Development. Many other studies have already found that background noise can limit children's abilities to learn. Television noise, in particular, is ubiquitous in American homes and may negatively affect a child's ability to concentrate.

But few researchers have looked at how background noise affects toddlers as they are just beginning to learn words.

Learning words early is important and can affect basic reading skills later on, says Brianna McMillan, a psychology graduate student at the University of Wisconsin-Madison and lead author on the study. "These initial word learning experiences are very foundational for how kids succeed later in life."

McMillan and her graduate adviser, professor of psychology Jenny Saffran, tested whether louder or quieter background speech affected whether toddlers at about 23 months could learn new words.

A group of 40 toddlers listened to recordings of new words in sentences. At the same time, they also heard background speech — recordings that sounded like two people speaking at once. The researchers say that this background recording could represent people chatting in the same room or on the television or radio.

Half of the toddlers heard louder background talk — "like having a conversation with a friend while someone else is standing a foot away talking," explains McMillan. The other half heard the same recording at a quieter decibel — "more akin to background coffeehouse chatter," she says.

With the background noise still playing, the researchers then taught the toddlers the meanings of the new words by showing them images on a screen of what each word represents.

Additional Information: Learning Above The Noise

The researchers tested two levels of background noise to see how they would affect toddlers' learning.
(Courtesy of Brianna McMillan, Jenny Saffran, Tina Grieco-Calub and Ruth Litovsky)

New Words With Quieter Background Chatter 6:13 Toggle more options
  • Embed Embed "> <iframe src="" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">
New Words With Louder Background Chatter 6:13 Toggle more options
  • Embed Embed "> <iframe src="" width="100%" height="290" frameborder="0" scrolling="no" title="NPR embedded audio player">

The scientists then tested how well each group of toddlers had learned the new words.

It turned out that toddlers could only learn new words when the background chatter was quieter.

The researchers tried the same experiment on a group of 40 toddlers who were about six months older and found the same result.

In a final experiment, the scientists allowed 26 toddlers to hear new words in sentences in a quiet room and then taught them the meanings of the words under the louder background noise condition. This group of toddlers did successfully learn the new words.

This last experiment provides some hope that carving out a bit of quiet time for learning words can help children attach meaning to those words later in their more typical noisy environments.

"It's not practical to completely turn off the radio or TV all the time," says McMillan. "I don't think that's how we can or should live." But she says that parents might want to be more aware of what their kids are hearing and turn off the TV now and then.

It's unclear whether the Wisconsin team's findings would hold true for a broader group of toddlers from across the United States — this study focused on a fairly small group from an area with a large university community.

But the Wisconsin team's research covers an important under-studied area, says Rochelle Newman, chair of the Department of Hearing and Speech Sciences and associate director of the Maryland Language Science Center at the University of Maryland. "There's been a lot of work on noise and its impact on learning once children reach the age of schooling. A lot less has been done on younger children," she says.

Newman says there are still many unanswered questions, including whether some level of noise might be beneficial for toddlers in the long term.

"Children are going to go to school where there is a lot of noise," Newman says. "They're going to eventually have to learn to deal with that noise. We don't know if they'll need some exposure to learn to deal with it. We don't know how much is too much noise."

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