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Federal Judge Blocks Texas Restriction On Abortion Clinics

Fri, 08/29/2014 - 10:22pm
Federal Judge Blocks Texas Restriction On Abortion Clinics August 29, 201410:22 PM ET


Opponents and supporters of a law that restricts abortion in Texas rallied outside the Texas Capitol in Austin as the bill was debated in July 2013.


A federal judge in Austin struck down part of a Texas law that would have required all abortion clinics in the state to meet the same standards as outpatient surgical centers. The regulation, which was set to go into effect Monday, would have shuttered about a dozen abortion clinics, leaving only eight places in Texas to get a legal abortion — all in major cities.

Judge Lee Yeakel ruled late Friday afternoon that the state's regulation was unconstitutional and would have placed an undue burden on women, particularly on poor and rural women living in west Texas and the Rio Grande Valley.

Texas Attorney General Greg Abbott, a Republican running for governor, immediately filed an appeal with the 5th U.S. Circuit Court of Appeals.

"We applaud today's ruling from Judge Yeakel," says Rochelle Tafolla, a spokeswoman for Planned Parenthood Gulf Coast in Houston. "But we also understand that the fight to protect women's access to medical care, including safe and legal abortion, is not over."

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Supporters of the law argued that the surgical center requirement would make abortion safer, but the judge found no health benefit. He ruled that the effect might actually be the opposite, writing: "Higher health risks associated with increased delays in seeking early abortion care, risks associated with longer distance automotive travel on traffic-laden highways, and the act's possible connection to observed increases in self-induced abortions almost certainly cancel out any potential health benefit associated with the requirement."

Yeakel also noted that the intent of the Texas rule was to close existing abortion clinics, given that the state left no provision for "grandfathering" existing clinics that could not afford millions of dollars in upgrades to comply with the regulations that govern surgery centers.

A local Houston obstetrician-gynecologist who performs abortions calls Yeakel's ruling "beautiful." (The physician asked not to be identified because he fears retribution from abortion protesters.)

The doctor says that if the Texas law had been upheld, he would have had to stop performing abortions in his two office locations because they do not meet the surgery center requirements, which include particular hallway dimensions and certain equipment. He says he cannot afford to construct or purchase an outpatient surgery center, and leasing space in an existing center is difficult because other tenants don't want protesters around.

"This was a good case," he says "There is no medical anything, anywhere, to show that having this done in a hospital or ambulatory surgical center is safer. It's nonsense; it's not. Complications are the same, risks are the same."

With the day the law was supposed to go into effect fast approaching, the doctor says he told some patients who called this week seeking abortions to make appointments, but to keep in contact with his office.

" 'You call me, listen to the news, keep your fingers crossed and pray for the women of Texas to have their constitutional rights restored.' That's what I told patients today," he says.

Texas Right to Life, a Houston-based group, said in a statement that "Pro-Life Texans are disappointed in the dangerous ruling and disconcerted by the prospect that the financial interests of big business abortionists are placed in higher regard than the safety and health of women. The women of Texas have been subjected to shoddy, sub-par and potentially dangerous abortion facilities for too long."

In the decision, Yeakel, who was appointed to the court in 2003 by President George W. Bush, focused on poor, rural and disadvantaged women. He says the burden did not just involve the hundreds of miles some women would have had to travel. He says that distance had to be assessed along with other factors, such as the need for child care, the unreliability of transportation, the inability to take time off work, and even immigration status and the inability to pass immigration checkpoints.

He writes in the decision, "When viewed in the context of the other state-imposed obstacles a woman faces when seeking an abortion in Texas — including a sonogram requirement, a waiting period, and the reduced number of abortion performing physicians resulting from the admitting-privilege requirement — the court is firmly convinced that the State has placed unreasonable obstacles in the path of a woman's ability to obtain a pre-viability abortion."

The Houston doctor who says he's relieved by Yeakel's decision,also says he realizes he may have to cancel abortion appointments next week — depending on how the Fifth Circuit responds. He says his patients have to become more proactive.

"I'm there to support them in their right to choose," he says. "But you know, I'm not going to take the whole thing on my head. If they want it, they should be out there, actually protesting and voting too."

This story is part of NPR's reporting partnership Houston Public Media and Kaiser Health News.

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An App Can Reveal When Withdrawal Tremors Are Real

Fri, 08/29/2014 - 3:20pm
An App Can Reveal When Withdrawal Tremors Are Real August 29, 2014 3:20 PM ET

He's working; really, he is.


People who abuse alcohol sometimes try to fake the hand tremors caused by withdrawal to get a prescription for sedatives.

This is the symptom-entering screen of the Tremor app.

University of Toronto

But the Valium used to treat withdrawal is often abused and can be dangerous. "If you give large doses of Valium to people who are intoxicated, bad things happen," says Dr. Bjug Borgundvaag, an emergency room doctor and researcher at Mount Sinai Hospital in Toronto. "They stop breathing."

Borgundvaag has been working the ER for 19 years, and he's gotten pretty good at knowing when someone is really in alcohol withdrawal. But less experienced colleagues often struggle to assess a collection of subjective symptoms that include headache, nausea and anxiety. So a fast, objective way to measure tremor would help. And what could be simpler or faster than the accelerometer in a smartphone?

It took almost two years, but Borgundvaag and compadres have created an app that measures the amount of tremor in a person who appears to be in withdrawal. They simply hand the person a smartphone and wait 20 seconds.

"We enrolled another patient in our study this morning," Borgundvaag says. "The guy came in and said he was trying to stop drinking, he'd had his last drink, tremulous and anxious and feeling sick."

The app tracked that man's tremors at a 1.8, relatively mild on a scale of 0 to 7; the doctor took a quick look at a video of the test and said that looked about right.

The app should also help figure out if a tremor is real or pretend.

It turns out that an involuntary tremor has a peak frequency of more than 7 cycles a second. When nurses tried to fake a withdrawal tremor, they had a hard time hitting that frequency. They also couldn't maintain the tremor; their hands got tired.


The Toronto doctor and his colleagues have joined the growing ranks of medical professionals inventing smartphone apps. Those apps increasingly are morphing from ones focused on taming vast amounts of information to tools that can be used to diagnose and treat patients.

So far the tremor app has been tested in about 80 patients; it needs more testing and validation before it can be used for diagnosis in patients who haven't agreed to be part of a research project. The preliminary results were presented Friday at the International Conference of the IEEE Engineering in Medicine and Biology Society in Chicago.

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The project has a nice startup vibe, with Simon Bromberg, an engineering student who is the son of one of Borgundvaag's colleagues, building the app for free; a computer science professor and a grad student at the University of Toronto designing the system that analyzes the signals; and staff at emergency rooms in hospitals around Toronto helping with the testing.

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Parham Aarabi, the professor of electrical and computer engineering who worked on the app, says as sensors and algorithms improve, they'll become increasingly useful for medical diagnostics like this. He's already working on another smartphone tool — an app that would let dermatologists objectively measure the redness of a patient's face, and calculate if a rash has grown or faded since the last visit.

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Experimental Drug Saves Monkeys Stricken With Ebola

Fri, 08/29/2014 - 1:09pm
Experimental Drug Saves Monkeys Stricken With Ebola August 29, 2014 1:09 PM ET Listen to the Story 3 min 29 sec  

A Public Health Agency of Canada worker seen inside the National Microbiology Laboratory's Level 4 lab in Winnipeg.

Public Health Agency of Canada/Nature

Scientists are reporting strong evidence that the experimental Ebola drug ZMapp may be effective for treating victims of the devastating disease.

A study involving 18 rhesus macaque monkeys, published Friday in the journal Nature, found that the drug saved 100 percent of the animals even if they didn't receive the drug until five days after they had been infected. The study is the first to test ZMapp in a primate, which is considered a good model for how a drug might work in humans.

“ The development of ZMapp and its success in treating monkeys at an advanced stage of Ebola infection is a monumental achievement.

"I think it's significant and a very important step forward in the fight against the Ebola virus," Gary Kobinger of the Public Health Agency of Canada, who led the study, told reporters during a telephone briefing Friday.

Kobinger and others cautioned that it remains unclear how well the drug might work in humans, but the findings are encouraging. "I think it strongly supports that concept," said Kobinger, stressing that this was still "speculative."

Kobinger noted the animals that were saved in the study were days — perhaps even hours — away from dying when they received the drug, and had been exposed to higher levels of the virus.

"We could rescue animals who had advanced disease," he said. That suggests the drug might be able to save people up to 11 days after becoming infected, he said.

ZMapp is a combination of three types of proteins known as antibodies, which the immune system typically produces in response to an infection. In this case, the antibodies against Ebola were created in the laboratory and produced using genetically engineered tobacco plants.

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The drug has already been used on a handful of victims of the current Ebola outbreak raging in West Africa, including two American missionaries who recovered. But doctors say it's unclear what role ZMapp may have played, if any. At least two other Ebola victims who received ZMapp, including a Spanish priest and a Liberian doctor, died.

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But Mapp Biopharmaceutical Inc. of San Diego, which developed the drug, has said it has exhausted its inventory. It would take months to produce any significant new supplies. So it remains unclear how much of a role the drug could play in the current outbreak, even if it proves to be effective in humans.

Nonetheless, Kobinger and others say the results are significant in the fight against Ebola. Despite many years of trying, there currently are no drugs or vaccines that have been shown to be effective for preventing or treating Ebola.

"The development of ZMapp and its success in treating monkeys at an advanced stage of Ebola infection is a monumental achievement," wrote Thomas W. Geisbert of the University of Texas Medical Branch at Galveston in an article accompanying the study.

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Rats! New York City Tries To Drain Rodent 'Reservoirs'

Fri, 08/29/2014 - 3:29am
Rats! New York City Tries To Drain Rodent 'Reservoirs' August 29, 2014 3:29 AM ET Listen to the Story 3 min 42 sec  

New Yorkers can take city-run classes to learn how to make their homes and businesses less attractive to these guys.

Ludovic Bertron/Flickr

New York City is launching the latest salvo in its never-ending war on rats.

City officials are ramping up efforts to teach regular New Yorkers how to make their streets, businesses and gardens less hospitable to rodents — in other words, to see their neighborhood the way a health inspector would.

When Caroline Bragdon, a rat expert with the city's Department of Health and Mental Hygiene, walks through the East Village, she's not looking at the people or the storefronts. Her eyes point down, at the place where the sidewalk meets the buildings and the street. "If you look really carefully, you can even see their hairs," Bragdon says, pointing to a little hole in the sidewalk next to a sewer grate. "When we see something like this, what we say to each other is, 'This catch basin is hot.' You know, 'This is ratty.' "

By that measure, this is one of the hottest neighborhoods in New York City. And it's one of the testing grounds for the city's new "rat reservoir pilot" — an initiative to try to reduce the rat population in neighborhoods with chronic infestations. Part of the plan is to hire extra exterminators and to seal up holes in sidewalks, parks and other public infrastructure. Rats can squeeze through the tiniest opening "in doors, in windows, in sidewalk curbs, in any building infrastructure," says Bragdon. "Rats only need a hole or a gap the size of a quarter to enter."

It's not enough just to poison the rats and collapse their burrows, Bragdon says. The city still does that, too. But she says the rats often come back — unless you can remove the conditions that attracted them in the first place.

"People complain about the city's rats coming into their property," Bragdon says, "but if you don't pest-proof your doors, it's like leaving your door open."

So another part of the city's new initiative is to educate regular New Yorkers on the finer points of rat behavior. It's a class known as the Rat Academy, a free, two-hour course on how to make a business, apartment building or community garden less attractive to rodents. The city holds Rat Academies periodically for landlords and anyone else who asks. Earlier this month, Bragdon taught a class for community gardeners in the East Village.

"We have a terrible rat infestation this year," says Brooke Demos, the co-president of a community garden on Avenue B. "The actual rats, the droppings, the dead rats, the decomposing rats. We smell the decomposing rats and have to find them underneath thick vegetation."

The rat problem is also on the upswing at another garden on Fifth Street. Longtime gardener Analee Sinclair thinks the main problem is people who feed the pigeons. "They'll throw a big pile of rice down somewhere in the garden or outside the garden," says Sinclair, "and that's saying free food for all rats, come and get it."

Seventy years ago, the great journalist Joseph Mitchell wrote in The New Yorker that "some authorities believe that in the five boroughs there is a rat for every human being." If anything, experts today say there are probably more.

Rats are basically nocturnal. On a recent tour of the East Village, Bragdon doesn't spot any live ones — but she did see a dead rat next to a construction site on Houston Street.

"You have the bait station here, and the dead rat over there," Bragdon says. "At least we got one."

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Texas Law Could Lead To Closure Of Clinics That Offer Abortions

Thu, 08/28/2014 - 4:39pm
Texas Law Could Lead To Closure Of Clinics That Offer Abortions August 28, 2014 4:39 PM ET


The Hilltop Women's Reproductive Clinic in El Paso, Texas, is expected to close if a state law is upheld by a federal judge.

Juan Carlos Llorca/AP

A federal judge in Austin, Texas, will issue a decision in the next few days about whether clinics that perform abortions in the state must become outpatient surgery centers.

The Texas law is part of a national trend in which state legislatures seek to regulate doctors and their offices instead of women seeking abortions.

The laws are collectively known as TRAP laws, for "Targeted Regulation of Abortion Providers."

"They do just that," says Rochelle Tafolla, a spokeswoman for Planned Parenthood Gulf Coast in Houston. "They 'trap' providers into very tight, medically unnecessary restrictions."

The Texas law that passed in 2013 requires doctors who perform abortions to first obtain admitting privileges at a hospital within 30 miles. Many clinics, especially rural ones, found it difficult to comply with that rule by the November deadline. The number of Texas clinics that perform abortions has dropped from 41 to 20.

Now the law's final rule requires doctors' offices to meet the standards of ambulatory surgical centers, including an array of rules that govern hallway widths, the presence of showers and lockers, and heating and cooling specifications. The rules also require conformance with other construction codes that can cost millions of dollars.

The rule goes into effect on Labor Day, unless federal Judge Lee Yeakel of the Western District in Austin issues an injunction to stop it. He is expected to issue a decision by Friday. If he stops the surgery center rule, Texas Attorney General Greg Abbott could quickly appeal to reinstate it.

One Houston doctor, who asked not to be identified because he fears being targeted by abortion protesters, says he will have to stop providing abortions if the final rule goes into effect.

Abortions are a small but important part of his practice: He delivers babies, gives wellness exams, performs gynecological surgery and even offers tummy tucks.

"Abortion is part of what we're trained to do as obstetricians-gynecologists. That's the medical point of it," he says. "When the politicians get into the mix, it becomes a completely different story."

Planned Parenthood's Tafolla says only eight clinics in Texas would meet the newest requirement, and they're all in the major cities: two are in Houston (including Planned Parenthood Gulf Coast), two in San Antonio, two in Dallas, and one each in Fort Worth and Austin.

Women in East Texas, the Rio Grande Valley and west of San Antonio would have to drive hundreds of miles for multiple visits, because a 2011 law put in place a 24-hour waiting period following a mandatory ultrasound, plus follow-up visits for women using the abortion pill.

"So it isn't as simple as saying, 'Oh, there's that one place in Houston, there's that one place in Austin or Dallas.' There simply isn't enough capacity; there aren't enough physicians," Tafolla says.

The Guttmacher Institute, a research organization that studies reproductive rights, says TRAP laws really took off in 2010. Twenty-six states now have them.

Groups that oppose abortion say the new laws make the practice safer and therefore protect women.

Melissa Conway, spokeswoman for Houston-based Texas Right to Life, says if the number of abortions and the number of clinics drop in Texas, that's something she's glad about, but it wasn't the intent of the law. She says the regulations are about making abortion safer, so abortion providers should invest in the required upgrades.

"The choice to have fewer clinics comes down to the abortion providers," Conway says. "If they choose to have disregard for the health of women, and the safety standards, which are practical, common-sense and best standards, that's their choice. But that points highly to the fact that they care more about their bottom line than they do their patient care."

The position of the American College of Obstetricians and Gynecologists is that "what those laws do is they limit women's access and expose women to increased risk by not enabling them to have a procedure near where they live," says ACOG CEO Dr. Hal Lawrence.

Lawrence says low-income women can't afford to travel, and may try to self-induce an abortion or carry an unwanted pregnancy to term. He adds that other outpatient procedures, such as colonoscopy, carry a fatality risk that is 40 times greater than first-trimester abortion, yet colonoscopy does not receive the same unwarranted scrutiny from lawmakers.

Tafolla says legislatures are passing TRAP laws because laws targeting demand for abortion were ineffectual. Other "demand-focused" laws include mandatory ultrasounds, a requirement that the patient listen to the fetal heartbeat, and waiting periods before abortions.

Legislators who oppose abortions "thought they could reduce abortion by focusing on women and shaming them," she says. "Now they're focusing on the providers and doing everything they can to shut them down."

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Scentless: Losing Your Sense Of Smell May Make Life Riskier

Thu, 08/28/2014 - 4:16pm
Scentless: Losing Your Sense Of Smell May Make Life Riskier August 28, 2014 4:16 PM ET

If you can't smell this, you could be in big trouble.

Henrik Sorensen/Getty Images

Losing your sense of smell may not sound like a big deal, but it can increase your risk of injury, researchers say. Without the sniffer serving as early warning system, it can be hard to know if the pan is burning on the stove or the chicken has gone bad.

The more a person has lost sense of smell, also called anosmia, the more likely they'll experience a hazardous event, including letting things catch fire on the stove, eating spoiled food or not noticing gas or smoke in the house, according to researchers at Virginia Commonwealth University in Richmond. They've been gathering information for decades on patients at their Smell and Taste Disorders Center.

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People who couldn't smell at all were at least three times more likely to have experienced a hazardous event than people with intact olfactory capabilities. Almost 40 percent of those non-smellers had run into problems.

Losing some or all of one's sense of smell is surprisingly common, with some studies estimating that up to 25 percent of the population is smell-impaired. One of the most common causes is a cold or other viral infection, which attacks the olfactory nerve that carries signals from the nose to the brain.

Some medications can impair sense of smell, according to the National Institutes of Health, as can allergies. And older people are more likely to have lost capacity, with one study finding losses in almost three-quarters of people over 80.

The study, which assessed the records of 704 patients who came to the clinic between 1983 and 2003, found that people under 65, women, and African Americans were more likely to have had a dangerous encounter when they had reduced sense of smell. Surprisingly, being a smoker did not increase the risk.

"It's total speculation, but we had an increased risk in females, and the gender role is that females are more likely to be involved in food preparation," says Dr. Evan Reiter, an associate professor of otolaryngology at VCU and an author of the study, which was published Thursday in JAMA Otolaryngology-Head and Neck Surgery.

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The smallish number of people involved in this study made it impossible for the researchers to figure out which of those demographic factors had the most influence. They also didn't track the number of times people had had a close call, or whether they'd been injured.

Doctors should be more vigilant in warning patients with olfactory problems about the risks, Reiter says. Other studies have found that patients are almost never given counseling on this issue. The NIH recommends that people with smell impairments trade in the gas stove for electric, keep the smoke detectors working, and label foods in the refrigerator with dates.

"People put sense of smell way behind sight and hearing, and I'm not going to argue with that," Reiter days. But aside from the safety risk, losing smell can be a drag. "You really can't appreciate odors that were pleasant; you can't taste food. That in and of itself can be debilitating."

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Experimental Ebola Vaccine Will Be Put To Human Test

Thu, 08/28/2014 - 3:24pm
Experimental Ebola Vaccine Will Be Put To Human Test August 28, 2014 3:24 PM ET

Scanning electron micrograph shows Ebola virus (red) on the surface of a kidney cell from an African green monkey.


An Ebola vaccine being developed by the National Institutes of Health and drugmaker GlaxoSmithKline is going to get a try in healthy people starting next week.

The number of Ebola cases and deaths continues to climb in Western Africa, underscoring the need for a vaccine to protect people from infection. There's no such vaccine now.

"This is a public health emergency that demands an all-hands-on-deck response," Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, said Thursday.

It's the first time the vaccine will be tested in humans. Animal experiments have been encouraging, but there's no guarantee the vaccine will work well in people. Several experimental vaccines against Ebola have been tested previously, but none has made it to the finish line.

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The initial test of the new vaccine will involve 20 healthy volunteers and will take place at the NIH in Bethesda, Md. Similar tests are expected to involve 40 people in Mali, 40 in Gambia, 60 in the U.K. and possibly more in Nigeria down the road.

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The preliminary studies aim to find out if the vaccine is safe and whether it triggers a strong immune response. Results are expected by the end of the year.

Vaccine testing is a "delicate balance," Fauci said. Researchers have to weigh "compassionate need" and the need to do what's "scientifically and ethically sound." Unlike a drug, a vaccine to prevent infection is given to otherwise healthy people. "Safety is paramount," he said.

Researchers are hopeful that this vaccine represents an improvement over previous approaches. The vaccine this time makes use of a chimpanzee cold virus, called chimp adenovirus type 3, to carry bits of genetic material derived from two kinds of Ebola: Ebola Zaire, the one at the center of the West African outbreak, and Ebola Sudan. Another version of the vaccine targets only Ebola Zaire.

Once the chimp virus is inside human cells, the Ebola gene leads the body to make Ebola protein to build immunity. There's no danger of Ebola infection or illness from the vaccine.

GlaxoSmithKline said it would make around 10,000 doses of vaccine beyond those used in the clinical tests so that an emergency supply would be available if the preliminary trials prove successful.

An experimental Ebola vaccine licensed to NewLinkGenetics Corp. by the Public Health Agency of Canada is also expected to be tested in humans soon. Work on that vaccine is being backed by the Defense Department.

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Hey, You've Got Mites Living On Your Face. And I Do, Too

Thu, 08/28/2014 - 10:52am
Hey, You've Got Mites Living On Your Face. And I Do, Too August 28, 201410:52 AM ET

Want to find your personal posse of Demodex mites? Gently scrape the pores on the sides of your nose.

Juergen Peter Bosse/iStockphoto

When Megan Thoemmes first found a tiny critter living in the pores of her nose, she was disgusted.

"The first time I found one on my face I didn't sleep for four nights," says Thoemmes, a graduate student at North Carolina State University.

But she's made peace with her Demodex mites, not only accepting that the microscopic arthropods are hers for life, but conducting a study that finds that everybody else has them, too.

"They're actually pretty cute," Thoemmes tells Shots. "With their eight little legs, they look like they're almost swimming through the oil."

That's the oil from the sebaceous glands on your face.

Scientists have known for more than a century that Demodex mites like to hang out on human skin. More recently, the creatures have been investigated as a potential cause of the skin disorder rosacea. But the thought was that just a small minority of people played host to the translucent critters.

Boy were they wrong about that.

Thoemmes and her colleagues had gotten good at using little laboratory spatulas to scrape the sides of people's noses at citizen science events in the Raleigh_Durhan, N.C., area, collecting a bit of the goop inside pores that the mites like to live in. They tested hundreds of people and found mites 14 percent of the time.

But that number seemed suspiciously low, so the scientists hit on the idea of looking for mite DNA on human faces, rather than the mites themselves.

In DNA tests of 29 people, 100 percent of those over age 18 carried DNA from Demodex mites. The results were published Wednesday in the journal PLOS ONE. Tests on more people have also come up with the same 100 percent number, Thoemmes says.

Makes you feel kind of itchy, doesn't it?

Scientists don't know how the mites spread among humans; one theory is that they're passed on from mother to child while breast-feeding. Young people are much less likely to have them, while they've been found on almost all cadavers. The mites probably crawl on our faces at night, when it's dark.

In a way, that 100 percent number is strangely comforting. Not only do I have face mites, but so does Benedict Cumberbatch. And Ruth Bader Ginsburg. And Beyonce.

"It's like having friends with you all the time," Thoemmes says. "Realizing that everyone has them and they're likely not causing any problems, it's pretty reassuring."

Thoemmes and her colleagues are pretty excited about using human mites and their DNA to figure out how people have migrated historically and how we've interacted with animals. One of the two species of human mites, Demodex brevis, is related to the dog mite that can cause mange.

Indeed, Thoemmes just got back from mite-hunting in Mexico and Peru. "We want to get a lot of samples from humans around the world, to see how that genetic diversity is falling out and have a fuller picture of what is happening,"

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Life After Ice Buckets: ALS Group Faces $94 Million Challenge

Wed, 08/27/2014 - 4:43pm
Life After Ice Buckets: ALS Group Faces $94 Million Challenge August 27, 2014 4:43 PM ET Listen to the Story 3 min 43 sec  

Bill Gates, Martha Stewart, LeBron James, Lindsay Lohan, Kermit the Frog and Conan O'Brien all got icily drenched for charity.

via YouTube

The ALS ice bucket challenge continues to bring in huge donations this summer for efforts to cure and treat what's commonly known as Lou Gehrig's disease. As of today, the viral campaign has raised more than $94 million for the ALS Association. That's compared with $2.7 million raised by the group during the same time last year.

“ Everybody will be watching. So a year from now, people will say, 'Where did that money go, and what's the social return on that investment?'

Now the association faces a challenge of its own: figuring out the best way to spend all that money.

"It's amazing. It's perhaps a little overwhelming," says Barbara Newhouse, the group's president and CEO.

She says it's a huge responsibility, handling more money than the group has ever had before.

"It's sort of like the lottery winner that receives a lot of money and four years later is looking in the mirror saying, 'What did I do with all that money? Where did it go?' " she says. "We don't want to be that kind of lottery winner. We want to take this money and very thoughtfully plan out exactly what we're going to do with it."

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Newhouse says the group has already begun consulting with clients, volunteers and its 38 chapters across the country on how the money should be spent. She says the focus is on expanding the work they already do — funding scientific research, providing care and counseling for ALS patients and their families, and advocacy. Proposals will be discussed at a board of trustees meeting in October. And then, she says, decisions will be made — very carefully.

"It's not about spending money quickly. It's about spending money thoughtfully," she says.

Ken Berger agrees, with a caveat. He's president and CEO of Charity Navigator, which rates and analyzes U.S. charities. His group gives the ALS Association four stars, its highest rating. But Berger also says the ALS charity faces a tough balancing act — investing the money well, but not sitting on it for too long. He says most donors expect the money they give to be spent in a timely way.

"You'll see situations where charities have stockpiled money when they've gotten an influx like this, and donors have gotten very upset about it," Berger says. "Because their expectation is: The problem is now, the need is now, the organization needs to step up and dramatically increase its services."

He and others recall how outraged donors were when the American Red Cross received hundreds of millions of dollars after the Sept. 11 terrorist attacks and then diverted some of the funds to other needs.

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Berger says, no matter what it decides, the ALS Association has to share its plans as soon as possible, so people know what to expect.

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Patrick Rooney, associate dean at Indiana University's School of Philanthropy, says he thinks most donors understand that curing a neurodegenerative disease such as ALS is a long-term investment, but he warns, "Everybody will be watching. So a year from now, people will say, 'Where did that money go, and what's the social return on that investment?' "

Newhouse says she's well aware of all this and that she has already been inundated with advice.

"I'm getting emails, everything from, 'Spend the money this way' to emails that say, 'Take your time, do it right' to people who say, 'I've got the cure for ALS, so just pay me, and I'll give you the cure.' I'm getting it all," Newhouse says.

She admits, though, that for someone running a charity, there are worse problems to have.

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Hello, May I Help You Plan Your Final Months?

Wed, 08/27/2014 - 3:28am
Hello, May I Help You Plan Your Final Months? August 27, 2014 3:28 AM ET


Listen to the Story 4 min 31 sec  

From her cubicle at Vital Decisions in Cherry Hill, N.J., Kate Schleicher counsels people who are seriously ill.

Emma Lee/WHYY

Imagine you're at home. You have cancer. You just had another round of chemo, and the phone rings.

“ The main goal ... is to make sure that you know what's important to you, and that your care aligns with what's important to you.

"My name is Kate. I'm a health care counselor," the gentle voice of the caller says from her cubicle in Cherry Hill, N.J.

This is not a typical telemarketing call. She wants to talk with you about your serious illness and, eventually, if you're ready to think about it, what you'd like to have happen at the end of your life.

Kate Schleicher, 27, is a licensed clinical social worker. At the start of the call, she knows almost as little about you as you know about her. Except she has your phone number, she knows the name of your insurance carrier (the insurance company provided your phone number), and she knows that you're pretty sick.

"The main goal with us talking is to make sure that you know what's important to you and that your care aligns with what's important to you," Schleicher says, "so that things go the way you want them to."

Schleicher is one of 50 or so counselors working for a company founded in 2008 called Vital Decisions. The firm represents roughly a dozen insurance companies nationally that want to, when appropriate, start discussions with beneficiaries about end-of-life care.

Vital Decisions, where counselors help terminal patients face end-of-life decisions, is a hushed place, filled with the murmur of soothing voices.

Emma Lee/WHYY

The effort is part of a recent wave of initiatives aimed at fostering these tough conversations.

Vital Decisions, based in New Jersey, first reaches out via a letter, though patients rarely respond; after that, the company's counselors essentially cold-call patients to offer counseling on behalf of the beneficiary's insurance plan. The phone sessions, funded by insurers, may span months, with each individual session with the patient or family members lasting an hour or so. Federal privacy rules permit this sharing of patient information with subcontractors for certain business purposes. Vital Decisions handles about 12,000 such cases a year.

"When you say that getting better is the most important thing on your mind, what does that look like for you?" Schleicher asks a Rhode Island man in a typical phone call.

Being able to breathe without an oxygen machine, he tells her. Schleicher repeats that back, then continues: "Breathing — OK. I also hear concern from you that 'I don't think that's necessarily going to happen.' Has someone told you that, or is that your own feeling?"

The call lasts about 15 minutes. Schleicher asks the man if it's OK to follow up, in a month or so. The hope of this program, she says, is to build a relationship with the patient over the phone, so he'll be comfortable discussing his situation and his goals with her and, ultimately, feel empowered to communicate those goals with others — his family and his doctors.

An Often-Avoided Topic

Mitchell Daitz, CEO of Vital Decisions, believes critical conversations about end-of-life care just aren't happening often enough. Even doctors tend to avoid the topic, he says.

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"The accepted norm in terms of the role of the individual who's going through this advanced illness experience is to be passive and be along for the ride, not to take charge, not to take control and ask for help," says Daitz.

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Meanwhile, navigating the medical system and figuring out your priorities can become increasingly difficult as your disease progresses, he says. "So when you're faced with a set of choices — none of which represent a really good choice — you become ambivalent."

To underscore this reality, here's a partial transcript of another phone conversation (released by Vital Decisions with the patient's permission) between a patient and Ariana Noto, another of the firm's counselors:

"I have a malignant brain tumor," the man tells Noto. "I've been fighting it for over a year now. The meds make me dizzy, and when I'm that dizzy I can't drive, I'm trapped in the house. I'm going nuts."

"That's a lot. I'm so sorry to hear that," she responds.

Within minutes the man is confiding information he may not have told anyone else. His meds make it difficult to function and do simple things like sitting around a table with friends, having a beer.

The two talk about what he understands about the effectiveness of his medicine. He's not sure. They go over what he might want to clarify with his doctor.

"You can control how much treatment you want and how you want symptoms to be managed as it does get worse," Noto says.

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"But I can't talk that way with my son in the room," he tells her. The man thinks his son would always insist that he keep trying, keep fighting.

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Daitz says jump-starting unbiased, honest discussions of end-of life care among family members early on could improve the quality of life for patients in the final weeks and months of an advancing illness.

The topic is sensitive, but Daitz says insurers and patients are more open to addressing it now than they used to be. And the effort to reimburse doctors when they conduct these conversations recently made a comeback in Congress, after an earlier uproar several years ago and false accusations that proponents were trying to authorize "death panels." Daitz well remembers those earlier, unsuccessful attempts to add reimbursement provisions to the Affordable Care Act.

"No one ever accused me of having good timing," he says.

Talking Freely About What You Want

The goal of these conversations, Daitz says, is to get to what the patient wants. That may be the most aggressive care possible, or just the easing of symptoms. Studies show that when patients are able to have these conversations, and understand their various treatment options, they often choose to have less aggressive care.

Daitz says such conversations have another benefit: reduced costs. By his own rough estimate, the company's services have resulted in about $10,000 less in health care spending per patient, which, by extrapolation, could translate to about $100 million less nationally in 2014.

Still, some people are wary of the company's approach. Dr. Lauris Kaldjian, professor of bioethics at the University of Iowa, is concerned that the counseling is solely on the phone — the social worker never actually meets with the patient and family. "If you don't have enough knowledge about what's actually going on with the patient," he says, "it would actually be irresponsible to pretend to have discussion that depends upon such knowledge."

Plus, end-of-life decisions are hard to keep totally neutral, he says, adding that he'd like to see full transparency from insurers and the company to guard against any bias creeping into the sessions.

Dr. Robert Arnold, who heads the palliative care division at the University of Pittsburgh Medical Center, says he thinks that insurers may be well-situated to address the communication disconnect, at least while some doctors and others who deliver care work through their own discomfort and improve their skills. He sees companies like Vital Decisions as part of a larger trend.

"Would I prefer that we live in a health care system where doctors, nurses, nurse practitioners and social workers who knew the patient were having these conversations? Yes," he says, but adds, "This is better than what patients have currently been getting."

This story is part of a reporting partnership that includes NPR, WHYY and Kaiser Health News.

Copyright 2014 WHYY, Inc.. To see more, visit
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Build A Toothbrush, Change The World. Or Not

Wed, 08/27/2014 - 3:27am
Build A Toothbrush, Change The World. Or Not August 27, 2014 3:27 AM ET Listen to the Story 7 min 38 sec  

The MD Brush has an unusual grip that automatically angles the brush head at 45 degrees.

Meredith Rizzo/NPR

Some people dream of climbing Mount Everest or riding a bicycle across the country. Mike Davidson's dream has been to create the perfect toothbrush, and now he thinks he's done it.

“ The thing about brushing is that, if you do it right, it feels a certain way. It feels like a golf swing or a perfect tennis shot down the side.

The saga of this brush tells a lot about the passion and persistence to take an idea and turn it into a product.

Shots first introduced you to Davidson in 2012. At the time, Davidson thought his toothbrush would be ready for the market the following June. That turned out to be wishful thinking. The new target date is Nov. 1 of this year, and it looks like he will make it.

Joe's Big Idea The Quest For The Perfect Toothbrush

I visited Davidson and his partner in this adventure, dentist Mike Smith, earlier this year at the headquarters of their company MD Brush. The headquarters is just an office in the dental practice they both work at in Pearland, Texas. Seated around a desk in that office, the pair told me the story of the brush.

It begins in 2007. Smith says the idea for the brush was Davidson's.

"His story is he was in his garage one night," Smith tells me. "He's a very handy man, me not so much. But he likes to do the handy work, so he has this clay model, brings it in one day to the office, and he's like, 'What do you think of this?' And I'm like, 'What do I think of that?' " At this point Davidson interrupts Smith with a laugh. "You recognized a good thing when you saw it," says Davidson.

So what's special about the brush? Well, to remove the bacteria that cause gum disease, most dentists say you should hold the brush so the bristles are at a 45-degree angle to the gum line. Easy enough, but most people don't. Davidson's brush has an unusual handle that automatically puts the bristles at the correct angle.

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"It is really, in my view, the perfect toothbrush. Not because I built it — because it makes sense," says Davidson.

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Coming up with the idea for the brush turned out to be the easy part. "As far as implementing it, and making it usable, neither one of us had any idea, and especially when it came to actually fabricating one," says Davidson. "We learned, and we wasted so much money," he adds with a rueful laugh.

The first design of the brush had a bladder mechanism inside that was supposed to squirt mouthwash into the gums as you brushed. It took 14 months to design this brush, but it was too complicated to manufacture. That was $7,000 down the drain.

The next design had the same shape, but no bladder and a different manufacturing design that uses what's called a core injection system.

That brush took two years to design. But the core injection system turned out to be a bust. Another $4,000 wasted.

"And now we're stuck, and we're scratching our heads, and it's like, oh, crap, this is another redesign. This is another two years," says Davidson. That was only when I was really, 'Maybe it won't happen.' "

Smith told him to just stay positive. "We'll get through this, it's just going to take time."

They did get through it, and designed a new model with a different manufacturing scheme. They teamed up with a Chinese company that agreed to make the brush. But after spending around $9,000 on airline tickets to China, that business relationship soured, and all they had to show for it was a lot of frequent flier miles. Still no toothbrush.

Finally, they linked up with a manufacturing facility in Vietnam that had Japanese owners. Everything seemed to be going smoothly, and the factory sent a prototype.

But there was a problem. The handle on the prototype felt wrong. It felt too big. They tried it out on their colleagues in the dental practice, and everyone, especially women with smaller hands, agreed the handle felt too big.

"What we didn't know is that when they make any kind of piece of plastic for anything, they'll make it upwards of 3 percent larger than it should be to account for the plastic contraction that occurs when hot plastic cools," says Davidson. Problem is, the way their brush is designed, it didn't shrink. So the 800-pound steel injection mold the manufacturer made is useless junk.

"So then we spend the next four months arguing about whose fault it is," says Davidson.

Once they got that straightened out, another problem. This one came completely out of the blue. A geopolitical dispute between China and Vietnam nearly scuttled the brush. Thousands of rioters trashed factories in Ho Chi Minh City, where the brush was supposed to be manufactured. Why the riots? It turns out the Vietnamese were upset with China's decision to plant an oil rig off Vietnam's coast, so some people attacked Chinese-owned businesses.

Davidson says their factory was spared because it was Japanese-owned, not Chinese-owned.

As I listened to this amazing story, I began to wonder what kept them going. All this just for a toothbrush? Or maybe they were hoping to make gobs of money. So I asked them: What if some executive at Colgate hears this story and thinks, "We should buy these guys out before their brilliant toothbrush design makes a giant dent in our business"? Would they take the money?

Smith says no. "I mean, we've taken it this far," he says. "We're going to continue to take it all the way."

"It's not about money," adds Davidson. "It's about winning. And it's about beating these guys at their own game. And showing we can do something better."

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Clearly this is something Davidson feels passionate about. "We're not just trying to sell a cool toothbrush," he says. "Ultimately, we want people to realize the value of having a clean mouth, because there are so many other systemic conditions that are related to gum disease. And the thing about brushing is that, if you do it right, it feels a certain way. It feels like a golf swing or a perfect tennis shot down the side — it feels a certain way. And that's what this brush is designed to do. It's designed to show you what good brushing feels like."

That's the idea, and it might be nice to have that feeling, but at the moment, he's got no proof that good feeling will result in less gum disease.

Davidson is confident that proof will come. In the meantime, they're forging ahead.

After I spoke with Davidson in early June, he flew off to Vietnam to oversee the first manufacturing run.

At the end of the first day of the run, Davidson was able to take a box of newly manufactured brushes back to his hotel.

"It was a heck of a feeling," he says. "To go through all that and finally see the vision that we had, right there in a completed form was a great thing."

There is, of course, that final hurdle: whether anybody will pay $10 for a toothbrush.

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Depressed Teens May Need Extra Support To Stick With Treatment

Tue, 08/26/2014 - 5:30pm
Depressed Teens May Need Extra Support To Stick With Treatment August 26, 2014 5:30 PM ET

Say a pediatrician notices that one of her teenage patients is showing signs of depression. In most cases, the doctor will notify parents and prescribe an antidepressant or recommend a therapist.

The trouble is, many of those teens won't go to therapy or won't stick with it. And that's part of a bigger problem: Nearly two-thirds of adolescents who have had a major depressive episode don't get treatment, according to the Substance Abuse and Mental Health Services Administration.

Getting parents more involved is a way to start reversing that trend, according to a study published Tuesday in the Journal of the American Medical Association. And pairing depressed teens with a counselor or clinician who can help them follow through with treatment can help as well.

In a clinical trial, researchers from the University of Washington and Seattle Children's Hospital split a group of 100 teens who screened positive for depression into two categories. Half were encouraged to seek treatment and had their screening results mailed to their parents.

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The rest were treated with what doctors call a collaborative care model. These kids were paired with a depression care manager (a specially trained clinican) who worked with them and their parents develop a treatment plan. The care manager also followed up with the teens every week or two, and called their parents every month.

After a year, only 27 percent of the teens who didn't get that extra coaching had enlisted in the recommended treatment, while 86 percent of the collaborative care group got treatment.

Dr. Laura Richardson, who led the study, says just the process of finding a therapist or psychiatrist can overwhelm teens and their parents. "We're asking them to go and access a system they've never navigated before," she says.

The care managers can help get the ball rolling, and also serve as mediators when teens and parents have different ideas about treatment, Richardson says. In some cases, she notes, "the teens really didn't want to go talk to somebody — they really would rather take a pill. And most commonly, the parents were opposed to that. Working through that sort of thing is really important for teens. They need to feel heard, and they need to feel supported."

The study's findings are in line with other research showing the collaborative care model works well for adults with mental disorders, says David Kolko, an adolescent psychologist and professor at the University of Pittsburgh.

"I think it shows great promise as a model," he says. "But I don't think it's an easy thing yet for us to implement." In general, the primary care system and the mental health care system are still separate in the United States, Kolko notes; primary care physicians don't get much training in mental health. Plus, most insurance companies have different reimbursement systems for mental and physical health.

The medical community's attitude about the best way to treat mental health problems also needs to change, Richardson says. The care manager the study employed cost about $1,400 per teen, she says. "When we compare that to what we pay for an MRI or any diagnostic testing, it's not that much."

"If I told you we could have a threefold improvement in cancer outcomes, people would jump on that," Richardson says. "I think we're a little more skeptical when it comes to mental health," she says.

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Categories: NPR Blogs Recruits Leader Of Successful Connecticut Effort

Tue, 08/26/2014 - 1:40pm Recruits Leader Of Successful Connecticut Effort August 26, 2014 1:40 PM ET

Partner content from

Under Kevin Counihan, Connecticut's health insurance exchange used concerts and storefront offices to reach customers.

Courtesy of Chion Wolf/WNPR

The federal government has recruited the leader of one of the most successful state health insurance marketplaces to lead the federal health exchange, in the hope that the second year of Obamacare will go more smoothly than the first.

Kevin Counihan, the head of Connecticut's health insurance marketplace, will be the new CEO of, the website that 36 states use to sell insurance under the Affordable Care Act, the Obama administration announced Tuesday.

Department of Health and Human Services Secretary Sylvia Burwell tapped Counihan to lead the site as part of a revamped management structure.

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Under Counihan's leadership, Access Health CT signed up about 79,000 people for coverage through Connecticut's exchange; another 120,000 gained Medicaid coverage. Surveys show that about half the people who gained coverage in the state were previously uninsured.

"One of the most important things we did is we showed that government can work," Counihan said at a press conference in Hartford Tuesday. "It can take on a highly complex social program and succeed."

But taking the reins of will be a much tougher job.

Connecticut has a Democratic governor and legislature, and it embraced the law early, including the expansion of Medicaid. serves states that are actively hostile to the law in the Deep South, as well as states that are adopting the law to a minimal degree and states that are active partners in running the exchange.

At the press conference, Connecticut Gov. Dannel Malloy joked that Counihan should have his head examined for agreeing to go to Washington. He also said that Burwell had called him to discuss Counihan, who confirmed that he had been recruited for the position.

All Tech Considered Government Tech Problems: Blame The People Or The Process?

Enrollment for Obamacare Year Two starts Nov. 15, and the challenges are many.

In addition to making sure the technical glitches that plagued stay in the rear-view mirror, Counihan will be responsible for keeping people who are already signed up satisfied, as well as reaching out to the millions of Americans who are eligible for coverage but not yet insured.

Counihan said he's optimistic that it can be done. "People understand intuitively that having people uninsured is not right for them or right for the country," he said. "Now, how we go about doing it — people can debate and there can be solid policy differences. But I'm fundamentally very optimistic that even though there are some big ideological schisms, that those can be bridged."

The Connecticut exchange excelled at marketing insurance, taking the pitch to Lil Wayne concerts, jazz festivals and a storefront on a city street. Counihan credits some of that success to the pool of talent he was able to draw on in Hartford, an insurance capital.

Counihan has several decades of experience in health care, including launching complex new coverage programs. After a career in the private insurance industry, including Tufts Health Plan and Cigna, he helped launch Massachusetts' successful health exchange starting in 2006. He also helped launch a private insurance exchange in California.

This is the second high-profile addition to the second-year team. Earlier this summer HHS brought on Andy Slavitt, who helped fix the site's initial problems as an executive with contractor Optum.

Counihan may have caught the president's attention a year or so ago during a conference call with the leaders of the state-based exchanges. Counihan recalls talking to the president about the marketing event at the Lil Wayne concert: "And he said, 'Lil Wayne. I've never been to a Lil Wayne concert.' And I said, 'Well, Mr. President, neither [had] I, and I don't think I'm exactly in the target demographic.'"

Later in the meeting, another exchange official from a different state talked about advertising their state's exchange on coasters at bars. "My counterpart in that state had said that she felt too old or embarrassed to actually go into bars to see if it's working," Counihan said. "At which point the president said, 'Well, if Kevin can go to a Lil Wayne concert, you certainly should be able to go to a bar.'"

Julie Rover contributed to this report.

Editor's note: This post was updated to include information about Counihan attending a Lil Wayne concert.

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Health Organizations Call For A Ban On E-Cigarettes Indoors

Tue, 08/26/2014 - 11:45am
Health Organizations Call For A Ban On E-Cigarettes Indoors August 26, 201411:45 AM ET

A woman smokes an electronic cigarette at a store in Miami.

Joe Raedle/Getty Images

Tobacco control advocates disagree on whether e-cigarettes are a useful tool to get smokers off tobacco, or just a sleeker form of one of the world's deadliest addictions.

A lot of that discord comes from the fact that there's just not enough science to know the risks and benefits of e-cigarettes, which deliver nicotine in a vapor rather than through tobacco smoke. And it could take years to find out if vaping causes cancer and other deadly diseases.

But that lack of certainty means that people need more protection, not less, according to a report released Tuesday by the World Health Organization. The global health organization called for a ban on indoor use of e-cigarettes in workplaces, restaurants and other public spaces.

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The vapors "pose a serious health threat to adolescents and fetuses," the report says, "and increase exposure of nonsmokers and bystanders to nicotine and a number of toxicants." Some studies have found that bystanders absorb more nicotine from vapor than from tobacco smoke, the report says.

One of the biggest selling points for e-cigarettes — that they can help people quit tobacco — hasn't been systematically tested, the WHO report finds. E-cigarettes are probably less toxic for smokers who switch completely, the report says. "The amount of risk reduction, however, is presently unknown."

Advertising of e-cigarettes should be banned, the report says, to reduce the risk to children and teenagers. The liquid used in the devices is often candy flavored.

And e-cigarettes don't necessarily deter young people from smoking tobacco, according to a study from the Centers for Disease Control and Prevention published Monday. Earlier studies have found a modest deterrent effect. But this study found that 44 percent of those who used e-cigarettes say they plan to try tobacco cigarettes in the next year, compared with 22 percent of those who haven't tried e-cigs.

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The number of teenagers who had never smoked a cigarette but used electronic cigarettes more than tripled in three years, the study found, rising from 79,000 in 2011 to more than 263,000 in 2013. The results were published in Nicotine and Tobacco Research.

And if that's not enough, the American Heart Association issued its first policy statement on e-cigarettes, saying that the devices should be regulated like tobacco products by state and local governments, including them in smoke-free laws and taxing them to discourage use by teenagers.

In April, the Food and Drug Administration issued proposed regulations for e-cigarettes, but final rules are the focus of intense lobbying by tobacco control advocates and the tobacco industry.

Both the WHO and AHA reports voiced fears that rather than help get rid of tobacco forever, e-cigarettes could make smoking culturally acceptable once again.

The reports were issued in advance of a global health meeting in Moscow in October, where regulation of e-cigarettes will be debated.

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Federal Officials Order Medicaid To Cover Autism Services

Tue, 08/26/2014 - 11:01am
Federal Officials Order Medicaid To Cover Autism Services August 26, 201411:01 AM ET

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State Medicaid programs now have to cover a range of treatments for autism.


When Yuri Maldonado's 6-year-old son was diagnosed with autism four years ago, she learned that getting him the therapy he needed from California's Medicaid plan for low-income children was going to be tough.

Medi-Cal, as California's plan is called, does provide coverage of autism services for some children who are severely disabled by the disorder, in contrast to many states that offer no autism coverage. But Maldonado's son was approved for 30 hours a week of applied behavioral analysis, a type of behavior modification therapy that has been shown to be effective with autistic children, and she was worried that wasn't enough.

So she and her husband, neither of whose jobs offered health insurance, bought an individual private policy for their son, with a $900 monthly price tag, to get him more of the comprehensive therapy.

"I don't know any family that can really afford that," says Maldonado. "We made some sacrifices."

That should be changing soon. In July, the Centers for Medicare & Medicaid Services said comprehensive autism services must be covered for children under all state Medicaid and Children's Health Insurance Program plans, another federal-state partnership that provides health coverage to lower-income children.

The new coverage guidelines apply to children with autism spectrum disorder, a group of developmental conditions including autistic disorder and Asperger's syndrome. Roughly 1 in 68 children has an autism spectrum disorder, according to the Centers for Disease Control and Prevention. The Association of Maternal Child Health Programs estimates that just over a third of them get coverage through Medicaid or CHIP.

Although coverage of applied behavioral analysis, which uses positive reinforcement and other techniques to encourage behavior change, isn't explicitly required, advocates expect it will be covered.

"Since ABA is the most accepted, effective treatment that isn't experimental and investigational, you can't just exclude it entirely," says Daniel Unumb, executive director of Autism Speaks' legal resource center.

"It's going to help a ton," says Maldonado. "We'll be able to pay our rent on time, and we'll be able to pay some bills that we have."

In a July coverage bulletin, CMS said that state Medicaid programs must cover a full range of autism services under the "early and periodic screening, diagnostic and treatment services" provision of the law. The EPSDT benefit, as it's called, covers any services that are medically necessary to correct or ameliorate physical or behavioral conditions in children and young people up to age 21.

Some states are concerned about the new requirement, says Matt Salo, executive director of the National Association of Medicaid Directors. "The nexus of covering a lot of kids and a fairly unknown condition and treatment for that condition, combined with EPSDT, anytime you get that, you get states a bit concerned because there's very little way to control costs in that arena," Salo says.

Like California, some states have provided limited coverage to certain age groups, for example, or up to a specified dollar amount. But the new policy is important because it requires mandatory coverage for everybody under 21, says Kristin Jacobson, co-founder and president of Autism Deserves Equal Coverage, a Burlingame, Calif.-based advocacy group.

In California, to get coverage under the state's Medicaid waiver program, children need to be substantially disabled and have a full autistic disorder diagnosis, says Jacobson.

"It doesn't cover people with Asperger's syndrome or other forms of autism spectrum disorder," she says, leaving children with language or certain functional abilities unable to get services.

Jacobson estimates that up to 6,000 new children in California who are currently ineligible under the waiver program may qualify for autism services under CMS' new guidance. "For them it's going to be a huge deal," she says.

The new coverage rules went into effect July 7 when the federal guidance was issued, although many states are still setting up procedures. More than a dozen states have contacted Unumb about implementing the new policy, he says.

Advocates across the country in recent years have been working to build support for better insurance coverage of autism services, including Medicaid coverage. The federal government's announcement followed a number of recent court cases, including federal circuit decisions in Florida and Ohio, affirming that applied behavioral analysis services were required under the Medicaid EPSTD benefit. Those decisions bolstered advocates' long campaign to get such services covered, Unumb says.

In addition, 37 states and the District of Columbia have passed laws that require private plans to cover autism treatment, according to Autism Speaks.

"It reached that boiling point where CMS had to step in and issue this guidance," says Unumb.

Caring for someone with autism costs an estimated $3.2 million over a lifetime, according to a 2007 study published in the Archives of Pediatrics and Adolescent Medicine.

Advocates argue that early intervention, even pricey applied behavioral analysis that may cost more than $50,000 annually, can save money in the long run. Nearly half of children who receive early interventions such as applied behavioral analysis can achieve mainstream status, according to a 2005 study published in the American Journal of Mental Retardation.

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Pediatricians Say School Should Start Later For Teens' Health

Mon, 08/25/2014 - 1:18pm
Pediatricians Say School Should Start Later For Teens' Health August 25, 2014 1:18 PM ET

About 40 percent of high schools start before 8 a.m., which contributes to chronic sleep deprivation among teens, according to the American Academy of Pediatrics.

Chris Waits/Flickr

Many parents have pushed for a later start to the school day for teenagers, with limited success. But parents just got a boost from the nation's pediatricians, who say that making middle and high schoolers start classes before 8:30 a.m. threatens children's' health, safety and academic performance.

"We want to promote safety with kids," says Dr. Cora Breuner, an adolescent medicine specialist at Seattle Children's Hospital. "We truly believe that our teenagers are getting six to seven hours of sleep a night, and they need eight to 10."

On Monday, the American Academy of Pediatrics issued a policy statement calling on school districts to move start times to 8:30 a.m. or later for middle and high schools, so that students can get at least 8 1/2 hours of sleep a night.

"It's making a very powerful statement about the importance of sleep to health," says Dr. Judith Owens, a sleep researcher at Children's National Medical Center in Washington, D.C., who wrote a review of the scientific evidence on teen sleep needs that accompanied the recommendation. "School start time is a cost-effective way to address this public health issue."

Shots - Health News Parents Of Sleep-Deprived Teens Push For Later School Start Times

But it's a change that most school districts have yet to embrace. Right now just 15 percent of high schools start at 8:30 or later, and 40 percent start before 8 a.m.

The doctors know they're leaping into an already tense conflict between parents and school districts. "It's been fraught with controversy," Breuner tells Shots. "It's horrifically challenging to move these start schedules up and back."

Letting teenagers sleep later typically means an earlier start for elementary schools, and sets off a cascade of adjustments. Teachers have to change their schedules, times shift for after-school activities and jobs, and older siblings who sit younger ones might no longer get home first.

But this is one area of health where the evidence is unequivocal, the pediatricians say. As children become teenagers, their sleep-wake cycle shifts two hours later, so it's difficult, if not impossible, for them to go to sleep before 10:30 p.m.

As a result, a National Sleep Foundation poll found that 59 percent of middle schoolers and 87 percent of high schoolers are getting less than the recommended 8 1/2 to 9 1/2 hours of sleep a night.

"There's a price to pay for that," Owens says. Studies have found that lack of sleep in teenagers increases the risk of traffic accidents, and makes them more vulnerable to depression and obesity. Teens who get more sleep do better academically, with better standardized test scores and better quality of life.

Caffeinating to get through the day or sleeping more on weekends doesn't make up for the sleep deficits, the doctors note. "It's not simply about getting teenagers to go to bed early or removing electronics from the bedroom," Owens says. "Those are important things, but the biology trumps a lot of these environmental factors. The average teenager can't fall asleep at 11."

As someone who had to rouse a bleary-eyed middle schooler at 6:20 Monday morning, I'm praying that our school district will reconsider its recent decision to punt on later start times. I know that science doesn't necessarily sway policy. But how about a nice bump in standardized test scores?

"Hopefully this policy statement will get the dialogue started in those school districts that haven't started, and be ammunition for those that are in the throes of making the decision," Owens says.

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People With Down Syndrome Are Pioneers In Alzheimer's Research

Mon, 08/25/2014 - 3:25am
People With Down Syndrome Are Pioneers In Alzheimer's Research August 25, 2014 3:25 AM ET Listen to the Story 4 min 43 sec  

Justin McCowan, 39, has Down syndrome and lives at home with his parents in Santa Monica, Calif.

Benjamin B. Morris for NPR

When researchers at the University of California, San Diego wanted to study an experimental Alzheimer's drug last year, they sought help from an unlikely group: people with Down syndrome.

"I had a CAT scan on my head, and I was in a special machine. It's called an MRI," says Justin McCowan, 39, whose parents drove him 125 miles from Santa Monica so he could participate in the study. McCowan also took brain function tests and spent hours with a needle in his arm so researchers could monitor levels of certain chemicals in his blood.

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Alzheimer's researchers are increasingly interested in people like McCowan because "people with Down syndrome represent the world's largest population of individuals predisposed to getting Alzheimer's disease," says Michael Rafii, director of the Memory Disorders Clinic at UCSD.

Down syndrome is a genetic disorder that's best known for causing intellectual disability. But it also causes Alzheimer's. "By the age of 40, 100 percent of all individuals with Down syndrome have the pathology of Alzheimer's in their brain," Rafii says.

Down syndrome is caused by the presence of an extra copy of chromosome 21. And one of the genes on chromosome 21 happens to control the production of amyloid, the substance that forms the sticky plaques associated with Alzheimer's.

Signature log shows how dementia degraded a woman's ability to write her own name.


Because their bodies produce extra amyloid, most people with Down syndrome develop problems with thinking and memory by the time they reach 60. Rafii has chronicled the decline of one of his patients, a woman named Irma, by collecting her signatures from medical forms over the years.

The first one is from 1999, when Irma was in her mid-50s. "You can see her signature is on the line, it's clear, she wrote it in script," Rafii says. By 2005, though, she has switched to large block letters. By 2009, Irma is misspelling her name. By 2011, "there are only a few characters written that resemble letters," Rafii says. "And in the very last year it's completely blank."

People like Irma used to be rare because the medical problems associated with Down syndrome meant they rarely lived long enough to get dementia. Today, though, better medical treatments mean people with the disorder often live into their 60s.

And that has created a huge opportunity for Alzheimer's research, says William Mobley, chairman of the neuroscience department at UCSD. "This is the one group in the world that you could argue would benefit most by the institution of early therapy," he says.

Early therapy means starting people on drug treatment years before the symptoms of Alzheimer's appear. The approach has been hard to test because, in the general population, there's no good way to know who is going to develop Alzheimer's. But for people with Down syndrome, it's a near certainty.

Justin and his mother, Annamarie McCowan, make a salad together.

Benjamin B. Morris for NPR

Finding a drug that prevents Alzheimer's in people with Down syndrome could help millions of people who don't have the disorder, Mobley says. "This approach to treating Alzheimer's disease might apply to all of us," he says. "Imagine someday a drug that we all start taking when we're 25 so we never get Alzheimer's disease."

That's a long-term goal. But already, people with Down syndrome are making a difference in Alzheimer's research. Early work with Down patients helped confirm the importance of amyloid. More recently, people with the disorder helped test an eye exam that may offer a simple way to screen for Alzheimer's.

And then there's the study that Justin McCowan signed up for. It involves a drug from Transition Therapeutics called ELND005 that, in mice, can prevent the brain changes associated with Alzheimer's. Scientists hope the drug can do the same thing in people, including those with Down syndrome.

McCowan says he volunteered for the study because he wants to help other people, especially a friend of his named Maria, who also has Down syndrome. "I feel very sad about Maria because she doesn't remember anything," McCowan says.

His parents, Don and Annamarie McCowan, say their son's memory is still sharp. They hope that what scientists are learning from people like Justin will keep it that way.

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California Trees Nailed As The Source Of Mystery Infections

Fri, 08/22/2014 - 3:32pm
California Trees Nailed As The Source Of Mystery Infections August 22, 2014 3:32 PM ET

A false-color electron microscope image of the fungus Cryptococcus gatii, which can cause fatal illnesses in humans. The yellow areas are spores.

Microbial Pathogenesis/Duke University

A fungus called Cryptococcus gattii can cause life-threatening infections, especially in people with compromised immune systems. One-third of AIDS-related deaths are thought to be caused by the fungus.

But though people in Southern California have been getting sick from C. gatti for years, nobody knew how.

Eucalyptus trees were a prime suspect, since they harbor the fungus in Australia. But even though eucalyptus trees grow like crazy in Southern California, the fungus hasn't been found on eucalyptus there.

A different form of the fungus has been making people sick in the Pacific Northwest, where it grows on Douglas fir trees. But there are no Doug firs in Los Angeles.

"We had a good idea that the fungus was going to be associated with trees," says Deborah Springer, a postdoctoral fellow at Duke University who studies C. gatti. "We just didn't know what trees."

And she didn't have the time to find out.

But someone did: Elan Filler, a 7th grader who was looking for a science fair project. Her dad, Dr. Scott Filler, an infectious disease specialist at the University of California, Los Angeles, ran into Dr. Joseph Heitman, Springer's advisor, at a conference, and told him about Elan. Heitman told Springer.

Elan Filler at the LA County Science and Engineering Fair with her project on Cryptococcus gattii.

Anne Maben/Courtesy of LA County Science & Engineering Fair Health Fungal Disease Spreads Through Pacific Northwest

Elan Filler and Springer connected on email and figured out a plan. Soon Elan was making her way around greater Los Angeles, swabbing tree trunks and growing out the fungus in Petri dishes. None of the eucalyptus trees in the first batch she gathered tested positive for C. gattii, so she expanded her tests to include more types of trees.

Springer analyzed the genetic fingerprints of fungi in the samples that Elan sent to North Carolina.

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Bingo! C. gattii from three trees, Canary Island pine, New Zealand pohutukawa and American sweet gum, matched almost exactly with C. gattii from infected patients. And the tree samples matched not just those from recent patients but from people who were sick 10 to 12 years ago. Thus this strain of C. gattii has been causing health problems in California for at least that long.

The results were published Thursday in PLOS Pathogens.

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People living or traveling in California should be aware of the risk of cryptococcosis from C. gattii, Springer tells Shots, especially if they have HIV/AIDS, cancer, or other illnesses that can suppress the immune system. "When you travel and you're exposed to these reservoirs, you have the potential to be vulnerable to these infections."

Early treatment helps reduce the risk of death or disability, according to the Centers for Disease Control and Prevention.

Elan Filler is named as an author on the study; not a bad credit for someone who just turned 16. "I was very lucky that she was interested in doing this and that she did a fantastic job," Springer says of her junior colleague.

Indeed. This spring Filler, now a high school junior, won the Los Angeles County science fair for another project on pathogenic fungi, and attended the big daddy of science fairs, the Intel International Science and Engineering Fair.

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Insurers Refuse To Cover Some Contraceptives, Despite Health Law

Fri, 08/22/2014 - 9:16am
Insurers Refuse To Cover Some Contraceptives, Despite Health Law August 22, 2014 9:16 AM ET

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The NuvaRing contraceptive ring can be used monthly to prevent pregnancy.

Sandy Huffaker/Getty Images

How much leeway do employers and insurers have in deciding whether they'll cover contraceptives without charge and in determining which methods make the cut?

Not much, as it turns out, but that hasn't stopped some from trying.

People still write in regularly describing battles they're waging to get birth control coverage they're entitled to under the Affordable Care Act.

In one of those messages recently, a woman said her insurer denied free coverage for the NuvaRing. This small plastic device, which is inserted into the vagina monthly, works by releasing hormones like the ones in birth control pills.

She said her insurer told her she would be responsible for her contraceptive expenses unless she chose a generic birth control pill. The NuvaRing costs between $15 and $80 a month, according to Planned Parenthood.

Under the health law, health plans have to cover the full range of birth control methods approved by the Food and Drug Administration without any cost sharing by women.

There are some exceptions if the plan falls into a limited number of categories that are excluded. One is if the plan is grandfathered under the law. Those plans were around since March 23, 2010, or before, and haven't changed much. If your plan is grandfathered, it has to disclose that status to you.

The other exception is if the plan is offered by a religious employer or house of worship. Following the recent Supreme Court decision in the Hobby Lobby case, some private employers that have religious objections to providing birth control coverage as a free preventive benefit will also be excused from the requirement.

In addition, the federal government has given plans some flexibility by allowing them to use "reasonable medical management techniques" to keep their costs under control. So if there is both a generic and a brand-name version of a birth control pill available, for example, a plan could decide to cover only the generic version without cost to the patient.

As for the NuvaRing, even though they may use the same hormones, the pill and the ring are different methods of birth control. As an official from the Department of Health and Human Services said in an email, "The pill, the ring and the patch are different types of hormonal methods. ... It is not permissible to cover only the pill, but not the ring or the patch."

Guidance from the federal government clearly states that the full range of FDA-approved methods of birth control must be covered as a preventive benefit without cost sharing. That includes birth control pills, the ring or patch, intrauterine devices and sterilization, among others.

But despite federal guidance, "we've seen this happen, plenty," says Adam Sonfield, a senior public policy associate at the Guttmacher Institute, a reproductive health research and education organization. "Clearly insurance companies think things are ambiguous enough that they can get away with it."

If you are denied coverage, your defense is to appeal the decision and get your state insurance department involved.

"The state has the right and responsibility to enforce this law," says Sonfield.

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Vision Problems Increase The Risk Of Early Death In Older People

Thu, 08/21/2014 - 4:26pm
Vision Problems Increase The Risk Of Early Death In Older People August 21, 2014 4:26 PM ET

Seeing better can mean living longer because it helps people remain independent.


An eye exam may be the ticket to a longer life, researchers say, because good vision is essential for being able to shop, manage money and live independently. And maintaining independence in turn leads to a longer life.

Researchers have known for years that people who have vision problems as they get older are more likely to die sooner than those who still see well. But they weren't sure why that was so.

To answer that question, scientists looked at data from the Salisbury Eye Evaluation, which tracked the vision and health of people ages 65 to 84 living in Salisbury, Md., from 1993 through 2003.

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People's visual problems at the start of the study or their loss of vision didn't directly predict an increased death risk, the researchers found. Instead, the vision loss made it less likely that people could pay their bills, do housework and otherwise manage their lives.

People who lost visual acuity equivalent to one letter on an eye chart each year had a 16 percent increase in mortality risk over eight years, and that was due to the loss in independent living abilities, the researchers said.

"An individual who's remaining relatively stable in their visual acuity in their older years is not seeing this subsequent difficulty in functionality," says Sharon Christ, an assistant professor of human development and family studies at Purdue University and the lead author of the study. It was published Thursday in JAMA Ophthalmology.

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The researchers did look at whether other factors, including physical illness, race, sex, depression, smoking, alcohol use and obesity, could be causing the increased mortality risk. But they found that the correlation between vision loss and instrumental activities of daily living was the strongest.

Reducing the risk may be as simple as getting an eye exam and new glasses or contact lenses, Christ told Shots. "It's really important to deal with impairment and make sure you're getting the eye care that you need."

People with vision problems that can't be corrected should get help with tasks of everyday life, Christ says, and be encouraged to remain physically active, postponing those functional declines for as long as possible.

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