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A Controversial Rewrite For Rules To Protect Humans In Experiments

2 hours 17 min ago

Audio for this story from Morning Edition will be available at approximately 9:00 a.m. ET.

Chris Nickels for NPR

Throughout history, atrocities have been committed in the name of medical research.

Nazi doctors experimented on concentration camp prisoners. American doctors let poor black men with syphilis go untreated in the Tuskegee study. The list goes on.

To protect people participating in medical research, the federal government decades ago put in place strict rules on the conduct of human experiments.

Now the Department of Health and Human Services is proposing a major revision of these regulations, known collectively as the Common Rule. It's the first change proposed in nearly a quarter-century.

"We're in a very, very different world than when these regulations were first written," says Dr. Jerry Menikoff, who heads the HHS Office of Human Research Protections. "The goal is to modernize the rules to make sure terrible things don't happen."

Many of the revisions are long overdue and would significantly improve oversight of scientific research, say researchers, bioethicists and officials who oversee human research studies.

But many of the updates are also triggering intense debate and criticism.

The new rules are too complex and too vaguely written in many places, says Elisa Hurley, executive director of Public Responsibility in Medicine and Research, a nonprofit organization in Boston. As such, she says, they could cause confusion for volunteers and researchers. It's a "flawed attempt" to improve things, Hurley says.

After hearing such criticism and receiving numerous requests to give the public more time to study the proposed revisions, the HHS office announced Tuesday that it was extending the public comment period by 30 days — to Jan. 6.

One change that some object to would require scientists to obtain explicit consent from patients before using their blood or tissue for research. The requirement aims to prevent a repeat of what happened to Henrietta Lacks. She was an African-American woman who died of cervical cancer in 1951. Cells taken from her cervix were used without her consent to produce a research cell line that has been kept alive in labs around the world ever since.

A color-enhanced scanning electron micrograph shows HeLa cells, which are commonly used in biomedical experiments. The research cell line was derived from cervical cancer cells taken from Henrietta Lacks in 1951.

Science Source

Researchers and companies use these cells in a wide range of research, including the development of new drugs. Neither Lacks nor her family consented to this use.

Under the new rules, scientists would only be able to do research on biological specimens from people who explicitly agree to it: " 'I'm OK with that. I'm OK with future research studies taking place using the leftover portions of my tumor or blood,' " Menikoff says.

But some scientists argue that in most cases the new requirement would create unnecessary red tape that would significantly impede important research.

"It's now going to be much more onerous to get this tissue that otherwise would just go in the trash," says Dr. Luis Garza, a Johns Hopkins University dermatologist who uses foreskins from circumcisions for a variety of experiments. "It's creating barriers for working on human tissue, which is what we need to do solve human disease."

Another revision would expand the number of studies that would have to follow the rules. Any scientist who gets federal funding would be required to adhere to the rules for every experiment they conduct, even those that aren't funded directly by the government.

Other changes are designed to make some research easier, such as conducting large studies involving multiple institutions. Right now, independent panels known as institutional review boards, or IRBs, oversee studies in each location where people volunteer. Under the proposed rules, one centralized IRB could run an entire multicenter study.

"It is all one study," HHS' Menikoff says. "So basically the same ethical rules apply to all of the subjects in the study."

He says the issues raised by any given study are pretty much the same at one study site compared with another site, so that duplicate ethical reviews can be eliminated. He and other researchers say the proposed change would help get new cures to patients more quickly.

But some advocates and bioethicists worry that streamlining study reviews in this way would undermine protections for volunteers, especially studies involving many sites, says Dr. Michael Carome, who heads Public Citizen's Health Research Group, a Washington, D.C.-based advocacy group.

It's unlikely one IRB can "adequately understand the local context, local ethical issues, the quality of the facilities and the credentials of the practitioners," he says. "That one IRB is unlikely to have sufficient knowledge of all those sites."

The proposal would also exempt many studies that don't pose physical risks. Examples include projects that only involve asking subjects questions and answers — things like surveys and in-depth interviews. The idea is to get rid of unnecessary bureaucratic hoops for harmless research, Menikoff says.

But this change is raising fears, too.

"I think that's a major step backwards, that as far as I'm concerned takes us back into the dark ages," says Ruth Macklin, a bioethicist at the Albert Einstein College of Medicine in New York.

Those kinds of studies "are not physically invasive, but they may be intrusive," Macklin says. "There are forms of harm that are not just physical harm."

Probing people about sensitive subjects, such as whether they've had an abortion or have been physically or sexually abused as children, can trigger strong emotional reactions, potentially causing psychological distress, Macklin says.

Menikoff disputes the changes would put anyone at risk. But he says the government will consider all the feedback it gets before changing the rules.

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Worried About The Flu Shot? Let's Separate Fact From Fiction

Tue, 11/24/2015 - 1:57pm

A nurse prepares an injection of the influenza vaccine at Massachusetts General Hospital in Boston in 2013.

Brian Snyder/Reuters/Landov

Every year before influenza itself arrives to circulate, misinformation and misconceptions about the flu vaccine begin circulating. Some of these contain a grain of truth but end up distorted, like a whispered secret in the Telephone game.

But if you're looking for an excuse not to get the flu vaccine, last year's numbers of its effectiveness would seem a convincing argument on their own. By all measures, last season's flu vaccine flopped, clocking in at about 23 percent effectiveness in preventing lab-confirmed influenza infections.

But that's not the whole story, said Lisa Grohskopf, a medical officer in the influenza division of the Centers for Disease Control and Prevention.

"Twenty-three is better than zero, but the 23 percent was overall. If you were one of the people who got an influenza B strain, it was closer to 60 percent," she said. "Even if it's not going to work against one virus very well, there are other viruses circulating."

Each year's flu vaccine contains three (trivalent) or four (quadrivalent) strains of the flu, selected in February by the World Health Organization and then endorsed by the Food and Drug Administration, as the ones experts expect will circulate in the coming flu season. They choose one H1N1 strain, one H3N2 strain and one B virus strain, either from the Yamagata lineage or the Victoria lineage. Quadrivalent vaccines contain a B strain from each lineage.

"Viruses in the Yamagata lineage or in the Victoria lineage are different enough that there's not a lot of cross-protection," Grohskopf said. "So if, say, we have a vaccine that contains a Yamagata family virus one season and it ends up being a predominantly Victoria season, we might not get very good protection against B strains."

But sometimes the experts' predictions are off the mark, and sometimes a strain they select mutates before the season arrives. Last year, the H3N2 strain they chose was a poor match, and that strain dominated the season, though B viruses became more common toward the end, Grohskopf said. Adjustments were made in the vaccine for the H3N2 virus this year.

"There's definitely reason to be hopeful that it's going to be better this year, but it's a little too early to tell," Grohskopf said. "Flu seasons can be very variable in terms of how fast they take off, but right now activity is still fairly light."

The flu vaccine options this year haven't changed much from last year, with two exceptions. The recombinant flu vaccine, made without the virus and without eggs, is now approved for all adults age 18 and older (instead of just those ages 18 to 49). And the intradermal vaccine, a low-dose vaccine that uses a shorter needle and injects only into the skin, is now available as a quadrivalent vaccine instead of just trivalent.

The CDC does not recommend any one vaccine over another. "We really just think it's important that people get vaccinated, and depending on where you are, you may not be able to get a particular product," Grohskopf said. "We don't want to hunt for one thing and then not get vaccinated until it's too late and flu is already peaking for the season."

Getting vaccinated against flu is particularly important for several at-risk groups and people in frequent, close contact with those at-risk groups, Grohskopf said. The populations at the highest risk of serious complications from the flu include pregnant women, people age 50 and older and children under age 5, particularly under age 2, she said.

Anyone with a chronic medical condition, such as lung disease, heart disease, kidney disease, liver disease or a neurological condition also has a higher risk of serious complications with an influenza infection. Those at risk of infecting more vulnerable people include parents of young children, day care workers, teachers, caretakers of elderly individuals and anyone working in health care.

But the problem with limiting flu immunization to these groups, she said, is that the flu is a tricky bug — and unpredictable.

"While some people are definitely at higher risk for severe disease if they get the flu, sometimes even generally healthy, young people — older children, younger adults who are the most hardy folks if they don't have any other chronic illnesses — can get really sick, hospitalized and even die, and we can't really predict who those folks are going to be," Grohskopf said. "The majority of people who get the flu are going to feel really crummy for a time and then recover without any problems." But even those folks lose work time and risk spreading the disease to family members and others, she said.

Another monkey wrench this year is additional evidence, reported at Stat, that getting a flu shot every year might reduce its effectiveness in warding off the flu. This evidence isn't entirely new, and scientists still don't entirely understand it, but it also doesn't mean that skipping the flu shot this year is wise if you got it last year.

In the meantime, for those who still haven't gotten the vaccine this year, make sure it's not because of one of the concerns below. As described in the links, each of these misconceptions is based on inaccurate information, a misunderstanding or an exaggeration.

Concern No. 1: Can getting the flu vaccine give you the flu or make you sick?

Fact: The flu shot can't give you the flu

Concern No. 2: Do I really need to get the flu vaccine this year if I got it last year?

Fact: For now, a new flu shot each year is still recommended

Concern No. 3: Could getting the flu vaccine make it easier for me to catch viruses, pneumonia or other infectious diseases?

Fact: Flu vaccines reduce the risk of pneumonia and other illnesses

Concern No. 4: Isn't the flu shot just a "one size fits all" approach that doesn't make sense for everyone?

Fact: You have many flu vaccine options, including egg-free, virus-free, preservative-free, low-dose, high-dose and no-needle choices

Concern No. 5: Can the flu shot cause death?

Fact: There have been no confirmed deaths from the flu shot

Concern No. 6: Aren't deaths from the flu exaggerated?

Fact: Deaths from influenza range from the lower thousands to tens of thousands each U.S. flu season

Concern No. 7: Aren't the side effects of the flu shot worse than the flu?

Fact: Influenza is nearly always far worse than flu vaccine side effects

Concern No. 8: Don't flu vaccines contain dangerous ingredients such as mercury, formaldehyde and antifreeze?

Fact: Flu shot ingredients do not pose a risk to most people

Concern No. 9: Shouldn't pregnant women avoid the flu shot or only get the preservative-free shot? Could the flu vaccine cause miscarriages?

Fact: Pregnant women are a high-risk group particularly recommended to get the flu shot. Fact: The flu shot reduces miscarriage risk. Fact: Pregnant women can get any inactivated flu vaccine

Concern No. 10: Can flu vaccines cause Alzheimer's disease?

Fact: There is no link between Alzheimer's disease and the flu vaccine; flu vaccines protect older adults

Concern No. 11: Don't pharmaceutical companies make a massive profit on flu vaccines?

Fact: Vaccines make up a tiny proportion of pharma profits. That makes it possible for them to continue making them in the event of a pandemic

Concern No. 12: Flu vaccines don't really work, do they?

Fact: Flu vaccines reduce the risk of flu

Concern No. 13: But flu shots don't work in children, do they?

Fact: Flu vaccines reduce children's risk of flu

Concern No. 14: Can flu vaccines cause vascular or cardiovascular disorders?

Fact: Flu shots reduce the risk of heart attacks and stroke

Concern No. 15: Can vaccines can break through the blood-brain barrier of young children and hinder their development?

Fact: Flu vaccines have been found safe for children 6 months and older

Concern No. 16: Will the flu vaccine cause narcolepsy?

Fact: The U.S. seasonal flu vaccine does not cause narcolepsy.

Concern No. 17: Can the flu vaccine weaken your body's immune response?

Fact: The flu vaccine prepares your immune system to fight influenza.

Concern No. 18: Can't the flu vaccine cause nerve disorders such as Guillain-Barré syndrome?

Fact: Influenza is more likely than the flu shot to cause Guillain-Barré syndrome.

Concern No. 19: Can the flu vaccine make you walk backward or cause other neurological disorders like Bell's palsy?

Fact: Neurological side effects linked to flu vaccination are extremely rare (see Concern No. 18), but influenza can cause neurological complications. Fact: The flu shot has not been shown to cause Bell's palsy.

Concern No. 20: Don't people recover quickly from flu since it's not really that bad?

Fact: Influenza knocks most people down *hard*

Concern No. 21: Can people die from the flu even if they don't have another underlying condition?

Fact: Otherwise healthy people DO die from the flu

Concern No. 22: Can people with egg allergies get the flu shot?

Fact: People with egg allergies can get a flu shot

Concern No. 23: Can't I just take antibiotics if I get the flu?

Fact: Antibiotics can't treat a viral infection

Concern No. 24: Since I got the flu last time I got a flu shot, that means it doesn't really work for me personally, right?

Fact: The flu shot cannot guarantee you won't get the flu, but it reduces the risk of catching it

Concern No. 25: But I don't need the shot since I never get the flu, right?

Fact: You can't predict whether you'll get the flu

Concern No. 26: Can't I protect myself from the flu by simply eating right and washing my hands regularly?

Fact: A good diet and good hygiene alone cannot prevent the flu

Concern No. 27: Won't getting the flu simply make my immune system stronger?

Fact: The flu weakens your immune system while your body is fighting it and puts others at risk

Concern No. 28: If I get the flu, why won't just staying home prevent me from infecting others?

Fact: You can transmit the flu without showing symptoms

Concern No. 29: Can having a new vaccine each year make influenza strains stronger?

Fact: There's no evidence flu vaccines have a major effect on virus mutations

Concern No. 30: Isn't the "stomach flu" the same thing as the flu?
Fact: The "stomach flu" is a generic term for gastrointestinal illnesses unrelated to influenza

Concern No. 31: Is there any point in getting a flu shot if I haven't gotten one by now?

Fact: Getting the flu shot at any time during flu season will reduce your risk of getting the flu

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

Copyright 2015 NPR. To see more, visit
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Common ADHD Medications Do Indeed Disturb Children's Sleep

Tue, 11/24/2015 - 12:05pm

Boy sleeping in bed


For a child with attention deficit hyperactivity disorder, meeting the daily expectations of home and school life can be a struggle that extends to bedtime. The stimulant medications commonly used to treat ADHD can cause difficulty falling and staying asleep, a study finds. And that can make the next day that much harder.

As parents are well aware, sleep affects a child's emotional and physical well-being, and it is no different for those with ADHD. "Poor sleep makes ADHD symptoms worse," says Katherine M. Kidwell, a doctoral student in clinical psychology at the University of Nebraska, Lincoln, who led the study. "When children with ADHD don't sleep well, they have problems paying attention the next day, and they are more impulsive and emotionally reactive."

Stimulant medications boost alertness, and some studies have found a detrimental effect on children's sleep. However, other studies have concluded that the stimulants' ameliorating effects improve sleep. The drugs include amphetamines such as Adderall and methylphenidate such as Ritalin.

To reconcile the mixed results on stimulants and children's sleep, Kidwell and her colleagues undertook a meta-analysis, a type of study that summarizes the results of existing research. The team found nine studies that met their criteria. These studies compared children who were taking stimulant medication with those who weren't. The studies also randomly assigned children to the experimental group or the control group and used objective measures of sleep quality and quantity, such as assessing sleep in a lab setting or with a wristwatch-like monitor at home rather than a parent's report.

Taking a stimulant medication leads to poor sleep overall for children, the researchers reported online Monday in Pediatrics. They found that the more doses of medication a child took per day, the longer it took for that child to fall asleep at night. The study suggests that extended-release versions of stimulants, which are taken once a day, have less of an impact on how long it takes to fall asleep than immediate-release formulas, which are sometimes taken three times a day, with the last dose close to bedtime.

Furthermore, the quality of sleep, or sleep efficiency — the percentage of time one is asleep while in bed — was worse for those on stimulant medications, although those kids who had been on the drugs longer fared better than those who had just begun taking the medication. There was also a gender difference, with boys on stimulant medication getting poorer-quality sleep than girls.

Finally, stimulants reduced the total amount of sleep children got at night. "Families and pediatricians need to be aware that sleep problems are a real effect of stimulant medication," says Kidwell.

"It's really good to see this," says William E. Pelham, a clinical psychologist and director of the Center for Children and Families at Florida International University, who studies ADHD in children and adolescents. Pediatricians are often quick to prescribe a medication without adequate follow-up, he says, and "assessing sleep side effects is important — it needs to be something that pediatricians routinely do."

For families, Kidwell says that the bedtime routines all parents use — reading stories, sharing news about the day, quiet activities like coloring — are very helpful for kids with ADHD too. "But parents may need to provide more structure, support, and simpler reminders for children with ADHD."

Aimee Cunningham is a freelance science journalist based in the Washington, D.C., area.

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Answering Your Questions: Health 101 For Grown Women

Tue, 11/24/2015 - 5:08am
Katherine Streeter for NPR

Remember that health class you had in middle school? Where you found out all that stuff about your body? We wondered why there wasn't a class like that for middle age. Could someone tell us what happens to us as we move through the decades?

Morning Edition asked listeners to send their questions about women's bodies and aging as part of our ongoing series Changing Lives of Women. We heard from hundreds of you asking about everything from sleeplessness to STDs to sex in old age.

We put your questions to two physicians: Dr. Nanette Santoro, a professor and E. Stewart Taylor chair of obstetrics and gynecology at the University of Colorado School of Medicine, and Dr. Cheryl Iglesia, a professor of obstetrics and gynecology at Georgetown University School of Medicine. Here are their answers, edited for length and clarity.

In my 20s I began getting one or two coarse black hairs on my chin. I jokingly referred to them as "stray eyebrow hairs." But as I've gotten older these hairs have increased and they grow back much more quickly. I'm tweezing at least once a week. Is this normal? — Amanda, 39, Texas

Yes, it is normal and not very well explained. The best explanation is that with aging, we become more insulin resistant. This leads to a decrease in a protein produced by the liver called "sex hormone-binding globulin" or SHBG. SHBG does what it says: it binds up the estradiol and testosterone that women make, and makes them less available to local tissues to do their job.

When SHBG drops, the "free" hormone in your bloodstream goes up in a sense, because it becomes more bio-available to your tissues. This is not a big deal in terms of estradiol, because estrogen is going down with menopause anyway, but testosterone can become more available to your tissues and skin, and is the likely culprit for your increased hair growth. — N.S.

Can you help me understand the roles of hormones and the appropriate levels for my body, age, etc.? I know about estrogen and progesterone. What else? — Denise, 49, South Carolina

Women have three types of reproductive hormones: estrogens (estradiol and its less potent cousins estrone and estriol), progestins and testosterone.

Estradiol is almost exclusively produced by the ovary. After menopause, estradiol levels can become so low that by age 70 or so, a woman is likely to have less estradiol circulating in her body than her same-age husband would have.

Progesterone, a naturally produced progestin, is made all the time in tiny quantities by the adrenal gland. But the ovary makes enormous amounts of it after ovulation, and women are exposed to it during their reproductive years every two weeks. There is no known appropriate level for progesterone in women, as no one knows exactly how much is needed after ovulation. If a woman is getting regular menstrual periods, she is very likely to be making adequate quantities of both estradiol and progesterone.

Testosterone's role is less well-defined in women. Women need some circulating testosterone to have normal ovulation, as the ovary takes up the testosterone and "feeds" it to the growing follicles, so they can produce estrogen. Beyond that, testosterone is believed to possibly drive libido in women, but this is not a very powerful effect for most women. (Sometimes testosterone is used as a treatment for low libido in women.)

As women age, their overall production of testosterone drops. The most dramatic drop is 10 to 15 years before menopause. There are some conditions in which women make too much testosterone. The common disorder of polycystic ovary syndrome, which affects about 5 to 7 percent of adult women, is such an example. In this case, the testosterone may disrupt the menstrual cycle and interfere with a woman's ability to ovulate, not to mention cause other problems like acne and excessive body hair. — N.S.

Does the decision not to have children affect my reproductive health and is there anything I can do to keep it in tip-top shape through the years? — Carolanne, 28, Oregon

Yes, there are things you can do. Not getting pregnant before age 30 can increase your risk of breast cancer, and nulliparity (no pregnancies) increases your risk of ovarian cancer. Tip-top shape requires a proactive approach. Maintain a healthy lifestyle and weight with healthy eating, adequate exercise and sleep. Oral contraceptives can protect against breast cysts and actually lead to decreased ovarian cancer, if taken for 10 years or more. Also, breast self-awareness and screening mammograms should be conducted at intervals based on your age and individual risk factors. — C.I.

So, kegels — you know, the things I should have been doing forever but didn't? Now I know why I should have done them. Can I make up for lost time or is it a lost cause? — Amelia, 48, Colorado

Kegels (pelvic floor muscle exercises) are important in maintaining bowel and bladder function and sexual satisfaction. Here is how they are done. A health care provider or physical therapist can help if you think you are not doing the exercises correctly. — C.I.

There is so much so much conflicting information about fat loss, specifically on women's hips. Could someone answer, once and for all, how to get rid of that stubborn fat that Mother Nature "gifted us"? Some of us want a gift receipt. — Cassidy, 25, Kentucky

Alas, there is no formula that will eliminate the accumulation of midbody fat with aging. As we age, we all become more insulin resistant and tend to accrue fat in the hips and waist. To boot, menopause is associated with a small increase in waist girth in most women. The best way to combat this increase is exercise, and women have to up their game in midlife to stay in the same place. When all else fails, there's always liposuction! — N.S.

I have started to skip periods. Does that mean I'll go into full menopause within the next few years? Or will I keep having periods for 10 more years? What are the real signs that you're almost done? — Jerrilyn, 44, Oregon

The menopause transition is divided into two stages — early and late. The early transition is marked by relatively isolated skipped periods, such that a woman does not go more than 60 days without a bleed. This stage can be very variable. If that is where you are at age 44, it's quite possible that you won't be fully menopausal (one whole year without a period) until you are 50 or so.

The median age at menopause is 51.4 years. However, if you enter the late transition stage and are more than 60 days without a bleed, that usually means you are going to be fully menopausal within 4 years. — N.S.

Does menopause end? When and why do the hot flashes and mental fog go away? — Anonymous, 52, Washington, D.C.

While the onset of menopause is easy to define, the end is far more squishy.

For most women, the first five years are the most symptomatic, but for up to 20 to 40 percent of women, depending on their particular physiology, hot flashes can last for 10 years. And for about 10 percent of women, they just keep going on and on.

The most characteristic mental symptom that women experience is short-term recall loss, which partially comes back (but doesn't go back to what it was before the transition started). Some women experience a loss in "executive function" and have difficulty with organizational tasks, and there is some evidence that this may be treatable with medication used for adult ADHD.

Poor sleep and depression can also co-exist with menopausal symptoms, and these problems will also contribute to mental fog-type symptoms. Treating the primary problem can help. — N.S.

I'm taking antidepressants and have little sex drive. How do I strengthen it? — Regina, 49, Illinois

Decreased libido is common during perimenopause, the transitional period before menopause. Flibanserin (Addyi) is the new FDA-approved drug for hypoactive sexual desire disorder in premenopausal women. Some antidepressants like SSRIs (including Prozac, Zoloft and Lexapro) are associated with decreased libido. Ask your doctor if you can switch to a different medication (like bupropion — Welbutrin). Strengthening the relationship with your partner to improve communication can often be very helpful in midlife. — C.I.

What can young women do to deter osteoporosis and improve joint health for later in life? When should women start working to preserve bone health? — Britt, 31, Texas

You can't start early enough. Women should pay attention to their calcium intake and ideally take in about 1,000 mg a day from dietary sources when they are premenopausal. After menopause, unless a woman is taking estrogen, her calcium needs go up to 1,200 mg a day. Vitamin D is also important to maintain. It's fairly easy to find the calcium content of commonly eaten foods on the Web; I like to refer my patients to the National Osteoporosis Foundation website, which links to several sources.

Taking a calcium supplement is reasonable if calcium intake is very low due to dairy intolerance or other reasons, but it's important not to overdo it. Too much calcium supplementation has been linked to a small but increased risk of heart disease. — N.S.

I have endometriosis and I'd like to know what I can expect as I age. Will going into menopause essentially "cure" the endometriosis? — Holly, 41, Massachusetts

Endometriosis affects about 3 to 5 percent of women and happens when the inner lining of the uterus, the endometrium, starts to grow within the pelvis. It tends to "burn out" and improve with menopause. If a woman has had multiple surgeries and has less ovarian tissue remaining, she may go through menopause earlier than normal. Many women with endometriosis tend to have menopause slightly earlier. Women with endometriosis can take hormones after menopause if their disease is not active, but it is recommended that they take estrogen with progesterone to prevent endometriosis growth, even if they have had a hysterectomy. — N.S.

What is the current practice on taking hormones for transgender women as they enter what would be the menopause years? Keep taking estrogen? Gradually decrease? — Alison, 42, Minnesota

Theoretically, a trans woman will have been exposed to estrogen for fewer years in her life, and might be able to extend the time during which she takes hormones. But there is not a lot of knowledge about how the long-term risks may play out in trans women. Therefore, current guidelines for trans women are similar to women who have been exposed to estrogen for their entire lives. In general, there is no reason to take hormones after the age of about 50 unless menopausal symptoms are present. — N.S.

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More Women Are Freezing Their Eggs, But Will They Ever Use Them?

Tue, 11/24/2015 - 5:04am
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If egg freezing once sounded like science fiction, those days are over. Women now hear about it from their friends, their doctors and informational events like Wine and Freeze.

Shady Grove Fertility Center in the Washington, D.C., area hosts Wine and Freeze nights for prospective patients every few months. Fifteen or so women in their 30s gathered at one recently over wine, brownies and sticky buns. A doctor explained the procedure, the costs and the odds of frozen eggs resulting in a baby — which decline as a woman ages.

Egg freezing for medical reasons — often women undergoing chemotherapy — has been possible for decades. Some 5,000 babies have been born from eggs that were frozen, thawed and fertilized.

In 2012, the American Society for Reproductive Medicine decided egg freezing was no longer an experimental procedure. That opened the door for clinics like Shady Grove to market it to women who don't have a medical reason to do it but are simply worried about their declining fertility — what's being dubbed as "social" egg freezing.

The "social" egg freezing business these days is good, says Shady Grove medical director Dr. Eric Widra. "This is clearly a time where the technological ability to do this is converging with the demographics," he says. "There are more and more women who find themselves in a situation where they may potentially benefit from having their eggs frozen."

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The majority of women currently freezing their eggs live in cities like New York, San Francisco and Los Angeles, according to Jake Anderson-Bialis, who's building a company called FertilityIQ with his wife, Deborah. "Marketing is aggressively happening, and these are the hubs where fertility clinics will prove out the concept," he says.

Anderson-Bialis says he's hoping to serve women freezing their eggs, as well as couples doing in vitro fertilization, with a database of fertility doctors and reviews from patients. FertilityIQ has so far gotten about 200 women who have frozen their eggs to write reviews of their experience.

The fact that wine is served at egg-freezing info sessions around the country might imply that this is no big deal, even fun. In fact, it's a complicated and physically demanding process.

Shots - Health News Freezing Eggs May Reduce A Woman's Odds Of Success With IVF Shots - Health News Women Find A Fertility Test Isn't As Reliable As They'd Like

Women inject themselves with hormones for up to two weeks to stimulate their ovaries to get as many mature eggs as possible. There's a surgical procedure to retrieve them. And there can be side effects along the way.

It also isn't cheap. One round averages about $12,000, and multiple rounds may be needed. No insurance companies cover egg freezing, but in October, a third tech company, Intel, joined Apple and Facebook in offering to pay the costs of egg freezing for employees. Financing may be available from a company called EggBanxx as well as some fertility clinics.

Stacey Samuel is a producer with CBS in Washington, D.C., (formerly with CNN). She thought about freezing her eggs earlier, but couldn't afford it until this year. "Before you know it, I'm 40, and I thought, oh, my goodness, this is very real for me," Samuel says.

Doctors prefer that women freeze their eggs before their mid-30s. But Samuel thought that advice might not apply to her. "I'm a black, South Asian female. Fertility in my culture and family extends for many years," she says. "So I'm thinking 40 is nothing but a number — I still get carded."

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She assumed she'd get the 15 to 20 eggs that doctors recommend women freeze. But in the middle of her cycle, while she was injecting hormones, there were complications. She ended up with just 10.

"Even when I choose to go use those eggs, I could lose them again," Samuel says. "So that feeling of reassurance that I thought I was buying with my near $20,000 on the table — I'm still unable to control the outcome."

Preserved eggs offer women like Samuel hope for beating the biological clock. But you can't escape the fact that your body will continue to age. The older a woman is when she freezes her eggs and when she uses them with in vitro fertilization, the lower her chances of success.

"There was a lot of encouragement to go forth even if it looks like you're kind of a risky case, because I think these dedicated doctors really want to know where they can take this," Samuel says. "And they need the numbers, and they need those of us who are willing to go through with it."

That concerns John Robertson, a professor of law and bioethics at the University of Texas Law School. He wrote a paper published in 2014 in the Journal of Law and the Biosciences on how women freezing their eggs can be both empowered and alienated by the procedure.

"The problem is it may be marketed to women who are in the older age group who may have very little chance of obtaining viable eggs," Robertson says. "So it's extremely important that there be full disclosure at every step of the process."

// Require.js is on the page (new Seamus) if (typeof requirejs !== 'undefined') { // Create a local require.js namespace var require_fertility_births_20151123 = requirejs.config({ context: 'fertility-births-20151123', paths: { 'pym': '' }, shim: { 'pym': { exports: 'pym' } } }); // Load pym into locale namespace require_fertility_births_20151123(['require', 'pym'], function (require, Pym) { // Create pym parent var pymParent = new Pym.Parent( 'responsive-embed-fertility-births-20151123', '', {} ); // 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_fertility_births_20151123.undef('pym'); require_fertility_births_20151123 = null; }) }); // 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-fertility-births-20151123', '', {} ); }); }); // Neither require.js nor jQuery are on the page } else { console.error('Could not load fertility-births-20151123! Neither require.js nor jQuery are on the page.'); }

Dr. Kevin Doody agrees. He codirects the Center for Assisted Reproduction in Dallas, and is president-elect of the Society for Assisted Reproductive Technology, or SART.

"I do not think that this should be highly promoted for the older-age woman," Doody says. "I'm not saying one should refuse or deny services if a 40- or 42-year-old woman wanted to have her eggs frozen. But I think it would warrant a substantial counseling session with that patient."

SART collects data on egg freezing in the U.S. And Doody says in 2013, about 4,000 women froze their eggs, up from about 2,500 the year before. And he predicts the number this year will be much higher.

But so far very few women who've frozen their eggs since the experimental label was lifted in 2012 have gone back to try to use them. SART found that of the 353 egg-thaw cycles in 2012, only 83 resulted in live births. In 2013, there were 414 thaw cycles and 99 live births. "Live birth" is not babies born — it means delivery of one or more infants, so it can include twins.

Overall, the success rate of live births from frozen eggs has remained consistently pretty low, at about 20 to 24 percent since 2009. And, Doody adds, "Even if the success rates were significantly higher, there's never going to be a guarantee for an individual patient that the eggs she would bank would ultimately result in a baby for her."

Medical anthropologist Marcia Inhorn at Yale University is conducting a study of the women who have frozen their eggs.

"The vast majority say, 'Well, it's given me peace of mind, I feel a sense of relief, it's taken the pressure off of me to rush into a relationship with someone who isn't right,' " she says.

Inhorn has interviewed about 100 women so far for her study.

"Most of these women are amazing professional women, I have to say," says Inhorn. "But the major reason over and over is not being able to find the right person to embark on a partnership and parenthood with."

Finding the right person is likely to be just as big a challenge for women in the future, Inhorn says. Which is why she believes this technology will become normalized, like in vitro fertilization.

And maybe it's already happening if people like Mindy Kaling are talking about it. The actress, producer and writer hit on this in an episode of her Hulu show The Mindy Project. Her character, a fertility doctor, goes to a college campus to peddle her newest service for women.

Here's what she tells them:

"When I was your age, I thought that I was going to be married by the time I was 25. But it took a lot longer than that. And unfortunately your body does not care if you are dating the wrong guy. ... Your body and your eggs just keep getting older, which is why freezing them is a pretty smart idea, 'cause it gives you a little bit more time."

But it will be years before there's enough data showing us whether egg freezing actually helps most of the women doing it fulfill their dreams of motherhood.

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Treating Prisoners With Hepatitis C May Be Worth The Hefty Price

Mon, 11/23/2015 - 5:04pm

Harvoni is one of the new medications for hepatitis C that can cure almost all infections.

Lloyd Fox/TNS/Landov

Doctors, patients and insurers have been struggling with how to determine who should be treated for hepatitis C now that effective but wildly expensive drugs can all but cure the disease. Treating prison inmates is a good investment that would save money in the long run, a study finds.

The drugs, Harvoni and Sovaldi, cure about 90 percent of patients, but at a hefty price, about $90,000 per patient. The drugs are made by Gilead Sciences and were approved by the Food and Drug Administration in the last two years.

More than 15 percent of U.S. prison inmates are infected with Hepatitis C. The study, published Monday in Annals of Internal Medicine, shows that as many as 12,000 lives would be saved if inmates were screened and treated.

And while it would cost a lot of money up front, over time the savings to society at large would be huge.

"We have to invest money either now or we invest later," says Jagpreet Chhatwal, an assistant professor at Harvard Medical School and senior author of the study. "If we invest now, it would gain us additional lives, it would prevent liver transplants, and it would prevent several thousands of advanced stage liver diseases."

Treating just those in prison would save $750 million over 30 years, the study finds, even including the cost of screening and medication.

Chhatwal acknowledges it's a tall order.

The first year cost of a widespread screening and treatment program in state prisons across the country would cost as much as $1.15 billion. That would require corrections systems to boost their health care budgets by 12.4 percent. The price would plummet over time, however.

The benefits would accrue mostly to people not in prison, the researchers found. That's because inmates would not infect people in the community after they are released.

"It's going to be very cost effective to provide screening and treatment because this would avoid new infections from occurring," Chhatwal added. "The majority of these new infections would occur outside the prison."

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A Peek At Brain Connections May Reveal Attention Deficits

Mon, 11/23/2015 - 4:22pm
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Brain imaging experiments found patterns associated with attention span.


A look at the brain's wiring can often reveal whether a person has trouble staying focused, and even whether he or she has attention deficit hyperactivity disorder, known as ADHD.

A team led by researchers at Yale University reports that they were able to identify many children and adolescents with ADHD by studying data on the strength of certain connections in their brains.

"There's an intrinsic signature," says Monica Rosenberg, a graduate student and lead author of the study in Nature Neuroscience. But the approach isn't ready for use as a diagnostic tool yet, she says.

The finding adds to the evidence that people with ADHD have a true brain disorder, not just a behavioral problem, says Mark Mahone, director of neuropsychology at the Kennedy Krieger Institute in Baltimore. "There are measurable ways that their brains are different," he says.

The latest finding came from an effort to learn more about brain connections associated with attention.

Initially, the Yale team used functional MRI, a form of magnetic resonance imaging, to monitor the brains of 25 typical people while they did something really boring. Their task was to watch a screen that showed black-and-white images of cities or mountains and press a button only when they saw a city.

"It gets really dull after a while," Rosenberg says, "so it's really hard to pay attention to over a long period of time."

During the test, the team measured the strength of thousands of connections throughout the participants' brains. And they were able to identify certain patterns that predicted a person's ability to stay focused.

What's more, these connection patterns were present even when the person wasn't trying to keep track of cities and mountains, or anything else, Rosenberg says. "We could actually look at that signature while they were resting and we could still predict their attention," she says.

The team wanted to know whether this signature could be used to assess younger people, especially those with ADHD. So they reviewed data on 113 children and adolescents whose brains had been scanned by scientists in China as part of an unrelated study. The children had also been assessed for ADHD.

The team used the information about brain connections to predict how well each child would do on the attention task with cities and mountains.

"And what we found was really surprising, and I think really cool," Rosenberg says. "When we predicted that a child would do really well on the task, they had a low ADHD score. And when we predicted they would do really poorly on the task, they had a high ADHD score, indicating that they had a severe attention deficit."

For many of the children, the researchers were able to predict not only whether they had ADHD, but how severe the problem was.

The test isn't perfect but does provide useful information, Rosenberg says. Eventually, she says, it might help psychologists and psychiatrists assess children with attention problems.

One potential limitation of the approach is that attention deficits aren't found only in people with ADHD, says Mahone. Individuals with anxiety, depression, learning disabilities and autism also have trouble staying focused, he says.

Regardless of the diagnosis, though, Mahone says, "knowing how the brain is different in a disorder, we can look at ways to help 'normalize' the brain."

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Mendocino Coast Fights To Keep Its Lone Hospital Afloat

Mon, 11/23/2015 - 3:30pm
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Mendocino, Calif., lures vacationing tourists and retirees. But the lone hospital on this remote stretch of coast, in nearby Fort Bragg, is struggling financially.

David McSpadden/Wikimedia

Board meetings for the Mendocino Coast District Hospital are usually pretty dismal affairs. The facility in remote Fort Bragg, Calif., has been running at a deficit for a decade and barely survived a recent bankruptcy.

But finally, in September, the report from the finance committee wasn't terrible. "This is probably the first good news that I've experienced since I've been here," said Dr. Bill Rohr, an orthopedic surgeon at the hospital for 11 years. "This is the first black ink that I've seen."

The committee erupted in applause, even a few cheers. But the joy was short-lived. By the next month, the hospital was back in the red.

Things first started going badly for the hospital in 2002, when the lumber mill in Fort Bragg closed down. Many people lost their jobs — and their health insurance, which had paid good rates to the hospital. Today, about 7,000 people are left in the blue-collar town, and the economy is propped up by tourists who come to the rugged Mendocino coastline to hike or fish. Visiting the hospital does not usually make it onto their itinerary.

By 2012, the hospital had declared bankruptcy. Now it's barely hanging on. And some locals are worried that the only hospital in the area might close for good.

If The Hospital Fails, So Goes The Community

"Nobody can live here without that hospital," says Sue Gibson, 78, a Mendocino resident. "I mean, the nearest hospital is an hour and a half away on treacherous mountain roads."

It's not only her family's health and the community's that Gibson is concerned about. She's afraid the local economy would be wrecked. The hospital is the largest employer.

"It has probably the best-paying jobs, and if they close that, all of that income would go away," she says.

That means less money spread around to the local bait shops and seafood restaurants. Also, Gibson says, the property values of businesses and homeowners would plummet.

Shots - Health News Help Wanted: Last Pediatrician On Mendocino Coast Retires

Across the country, rural communities share similar fears. Small rural hospitals everywhere have been struggling to survive. Many people who live in these areas are older or low income — not a great customer base for a hospital that needs to make money.

The government used to pay these small critical access hospitals extra to account for that. Medicare reimbursed them 101 percent of their reasonable costs. But after the recession, the government trimmed payments to 99 percent of costs. Medicaid pays much less, sometimes just half the cost of providing the care.

At the Mendocino Coast Hospital, more than 80 percent of patients are covered by Medicare or Medicaid.

"The general health care reimbursement environment is to do more with less," says Bob Edwards, the hospital's CEO. "And I would even go so far as to say, it's a starvation model."

Plus, the government excludes a lot of expenses from its cost calculation, like doctors' fees or janitorial services, says Wade Sturgeon, the hospital's chief financial officer. Medicare basically tells the hospital what it will pay.

"So it'd be like going in to Safeway and saying, 'Hey, there's a jug of milk. I really want that jug of milk; I'll give you $2,' " Sturgeon explains. "But the price says $3.50. 'You're only going to get $2.' Often times, that's what happens to us."

The upshot: Many hospitals that never had to worry about controlling costs now do. They have to learn to compete in an open market, just like other hospitals, just like many other profit-driven businesses.

Some hospitals have planned ahead and adapted. Down the long, winding road from Fort Bragg, the Frank R. Howard Memorial Hospital in Willits just finished a $64 million renovation, complete with modern technology and a full organic garden that supplies the hospital cafeteria.

But some hospitals haven't adapted. In the past five years, 57 rural hospitals in the United States have closed, according to data from the Rural Health Research Program at the University of North Carolina. Others have declared bankruptcy, like the Mendocino Coast District Hospital.

Battles Over How To Keep Hospital Afloat

The financial failure led to a lot of finger-pointing in this small town. Administrators blame the policy changes and payment reforms. Some doctors blame the administrators.

"It was economic mismanagement, to put a single label over all these things," says Dr. Peter Glusker, a neurologist based in Fort Bragg for 37 years. "Because of people who just didn't know any better."

The public hospital is governed by a five-member board of directors, elected from and by the community. Glusker says some past directors knew nothing about finance or nothing about health care. Some just stopped caring.

So he and another doctor ran their own campaign, promising to shake things up on the board and change things. They were elected last year.

"There's a segment of the population that says, 'Oh good, it's about bloody time,' " Glusker says. "But there's another segment of the population, in the institution, that says, 'Hey, you're rocking the boat and this is bad.' "

Glusker's running mate and ally on the board is Rohr, the steely orthopedist, who wears his gray hair long, tied back in a tight ponytail. He spent many years in the corporate world and vowed to bring the kind of financial discipline he learned there to the tiny public hospital in Fort Bragg. A lot of people are afraid of him.

"Look, this is not about being ruthless," Rohr says. "It's about keeping this business alive, and it's only alive if it makes money, OK."

A lot of his sentences are punctuated like this, with a sometimes impatient "OK," which seems aimed at making sure you don't miss his point. Like when he's giving a presentation at a finance committee meeting, staring daggers at the CEO.

"We keep saying $870,000 loss," Rohr says. "Not acceptable, OK."

Edwards, the current CEO, has been on the job six months. He's the hospital's fourth chief executive in a year. His right-hand man is Sturgeon, the brand-new CFO, who started in September.

On days the financial committee meets, Sturgeon wears a mint-green shirt and a tie with a $100 bill on it. He says things like, "Do the math."

Right now, the hospital administrators and the doctors on the board are pitted against each other in a battle over how to keep the hospital doors open — a battle that is echoed at small hospitals across the nation.

Cut costs or raise prices? Board members disagree on best approach

CFO Sturgeon and CEO Edwards say the hospital should focus on increasing revenues. It should find more patients to come to the hospital, maybe develop new services to attract then.

"If you're not growing, you're dying," Sturgeon says.

He says the hospital should also charge more money for services provided to patients who have private insurance — currently about 15 percent of the hospital's patients.

"Anytime we don't raise prices, we're leaving money on the table," he says.

But Rohr says that would put an unfair burden on the small-business owners in town, the ones who typically buy their own private insurance.

He and Glusker say the hospital should be focused on controlling costs.

"It's obviously an expense problem," Rohr says. "And you can come to that conclusion very quickly, just by looking at the data."

The hospital is going to have to make some very difficult decisions to balance its budget, Rohr says. He offers this analogy: "There's 20 people in the water about to drown. And there's a rowboat there, but the rowboat can only hold 10," he says. "If 11 people get in that rowboat, it sinks and all die, OK."

At the hospital, this means choosing between a cardiologist and an ophthalmologist, a cafeteria and a new X-ray machine.

"It's horrible to make the decision that 10 are going to drown," he says. "But I've got to pick the 10. OK."

One area Rohr thinks could be ripe for trimming? Administrative positions.

"I walk into the hospital to do rounds in the morning, and there are more people standing around with clipboards than with stethoscopes," he says, "and that doesn't feel like the right formula to me."

But CFO Sturgeon says there's not enough management. "Physicians always think there's too much management," he says. "You have some people with 50 direct reports. Does that make sense?"

There are some cuts both sides agree on. All say there needs to be some serious culling of the health benefits for hospital staff. Years ago, the nurses union negotiated to have the hospital pay full health benefits for any full-time or part-time nurse and their entire families. Nurses pay nothing toward their monthly premiums.

"Do the math. How many people are we paying for to have full family coverage?" Sturgeon says. "I've never worked in a hospital that provided the type of health insurance benefits that we have at this facility."

Meanwhile, Need For New Hospital

To understand exactly how dire the financial situation is, one need only walk into the lobby of the hospital itself. It's like stepping back into 1971. The main patient floor is lined with drab brown carpets. The smell of Salisbury steak spills out of patient rooms.

"I've been in Third World countries. This is pretty basic, OK," Rohr says, walking by the operating suite.

Through the maternity ward and the emergency room, Rohr says the flooring is layered with asbestos. The concrete isn't strong enough to hold the weight of modern CT scanners and MRI machines. On top of all that, in 2030 new state requirements kick in for earthquake readiness.

It all points to one conclusion. "We're going to have to build a new hospital," Rohr says.

So, not only is the hospital struggling to maintain a balanced budget through normal hospital operations but it also has to come up with tens of millions of dollars to replace itself in 15 years.

It's an especially tall order for a hospital that just posted its first monthly profit in a decade, then slipped into the red again right away.

If you ask the Washington policymakers in charge of payment reform, some will say it's just a harsh reality that some hospitals will have to close. Some previous local administrators have predicted that the Fort Bragg hospital will one day be replaced by a helicopter landing pad. People will be airlifted out for heart attacks and other emergencies. For other planned surgeries, like hip replacements, people will have to drive "over the hill" to another hospital.

But the people who live in Fort Bragg and Mendocino don't like that scenario. Gibson has been hosting community meetings in her living room, where people spread out on the pink Victorian sofas to talk about how to save the hospital.

She's rallying support for a possible solution, and it's one the administrators and doctors are united around: a new tax on homeowners. Local residents will very likely vote on that in November 2016.

"The only way we're going to be able to save this place, really, is with a parcel tax," she says. "But they can't even think about that until they clean up their act."

After the Wall Street meltdown, banks were too big to fail. The feeling here is that the local hospital is too important to fail. And the residents will be tapped to fund the bailout.

This story comes from a reporting partnership of NPR, KQED and Kaiser Health News.

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Gratitude Is Good For The Soul And Helps The Heart, Too

Mon, 11/23/2015 - 3:54am
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As we launch into Thanksgiving week, consider this: Research shows that feeling grateful doesn't just make you feel good. It also helps — literally helps — the heart.

A positive mental attitude is good for your heart. It fends off depression, stress and anxiety, which can increase the risk of heart disease, says Paul Mills, a professor of family medicine and public health at the University of California San Diego School of Medicine. Mills specializes in disease processes and has been researching behavior and heart health for decades. He wondered if the very specific feeling of gratitude made a difference, too.

So he did a study. He recruited 186 men and women, average age 66, who already had some damage to their heart, either through years of sustained high blood pressure or as a result of heart attack or even an infection of the heart itself. They each filled out a standard questionnaire to rate how grateful they felt for the people, places or things in their lives.

It turned out the more grateful people were, the healthier they were. "They had less depressed mood, slept better and had more energy," says Mills.

And when Mills did blood tests to measure inflammation, the body's natural response to injury, or plaque buildup in the arteries, he found lower levels among those who were grateful — an indication of better heart health.

So Mills did a small follow-up study to look even more closely at gratitude. He tested 40 patients for heart disease and noted biological indications of heart disease such as inflammation and heart rhythm. Then he asked half of the patients to keep a journal most days of the week, and write about two or three things they were grateful for. People wrote about everything, from appreciating children to being grateful for spouses, friends, pets, travel, jobs and even good food.

After two months, Mills retested all 40 patients and found health benefits for the patients who wrote in their journals. Inflammation levels were reduced, and heart rhythm improved. And when he compared their heart disease risk before and after journal writing, there was a decrease in risk after two months of writing in their journals. Those results have been submitted to a journal, but aren't yet published.

Mills isn't sure exactly how gratitude helps the heart, but he thinks it's because it reduces stress, a huge factor in heart disease.

"Taking the time to focus on what you are thankful for," he says, "letting that sense of gratitude wash over you — this helps us manage and cope."

And helps keep our hearts healthy.

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When A Stranger Leaves You $125 Million

Sat, 11/21/2015 - 8:01am
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Bryan Bashin, CEO of the LightHouse for the Blind and Visually Impaired, in San Francisco, started losing his sight in his teens. "Don't just hide," he advises others. "This is not some kind of deep loss. This is just another side of being human."

Jeremy Raff/KQED

One morning last year, when Bryan Bashin sat down to check his email, a peculiarly short note caught his attention.

"A businessman has passed away. I think you might want to talk to us," it read.

Bashin directs a nonprofit in San Francisco called the LightHouse for the Blind and Visually Impaired, so he gets a lot of email about donations. But this one felt different. It came from a group of lawyers handling the estate of a Seattle businessman who had died, Donald Sirkin.

When Bashin and the LightHouse's Director of Development, Jennifer Sachs, checked the LightHouse's donor database, they found no record of him. Sirkin had never donated to the LightHouse for the Blind and Visually Impaired before, or used its services.

And yet, in his will, Sirkin had left almost his entire estate to the LightHouse, with no explanation.

In the end, the gift totaled over $125 million, more than 15 times the LightHouse's annual budget. Bashin believes it's the largest single gift ever given to a blindness organization.

"It's one of those experiences where time stands still, where you know that every little bit of what you're experiencing will be engraved in your memory," Bashin says. "This is the moment that everything is going to change."

He's 60 years old, tall and almost always smiling. His eyes are cloudy; he walks with a cane. He gives off the impression of being an entirely functional, confident blind person.

But this Bryan Bashin is a relatively recent incarnation, because for a long time, Bashin didn't identify as blind at all.

"I didn't say the "B" word," Bashin says. "Instead I used euphemisms if I had to. I used the lingo of the day: 'visual impairment,' 'low vision,' 'visual challenge,' that kind of thing."

Bashin's vision began to falter when he was in his teens, and gradually got worse. By his 20s, he was legally blind. Today, he says, he sees the world "as if through wax paper." He can make out some light and color, but not faces or words.

Yet through his 20s and most of his 30s, Bashin squeezed by on the little vision he had, relying on magnifiers and special lamps to read what he could. He memorized the map of his daily route so as to not get lost. He only went out during daylight, to avoid the confusion of navigating in complete darkness.

Bashin says that a lot of blind Americans use work-arounds like these.

"Most never use a cane, or a dog, or Braille or any of the things that are identifiably blind," he says. "In the blind community we say we're in the closet, and it is just like being in the closet in the gay community. You try to pass and you try to be somebody that you're not."

But as Bashin's vision declined, these work-arounds became harder to pull off. They were time-consuming and exhausting. Finally, when Bashin was 38, with his vision at about 10 percent of normal, he realized he couldn't hide anymore. He decided to learn to be a blind person in public.

A friend took Bashin to a local blindness agency that Bashin found dishearteningly shabby. Stuffing was coming out of the chairs. The air conditioners buzzed. The office hadn't been painted in decades.

For Bashin all of this was symbolic. The place lacked dignity. "None of that period made me feel like I could be a cool blind person and do stuff in the future," Bashin said. "I felt ashamed. I felt confirmed in my suspicion that blindness would be a diminishment of my potential."

But he did get something out of it. He learned how to navigate with a cane. He started learning the technologies that make life vastly simpler for blind people than it was a generation ago: the smart phone, text readers and pocket recorders.

And suddenly, everything got easier. For example, using text-to-speech was "vastly quicker" than trying to make out giant letters on a screen.

Since then, Bashin has made it his life's mission to help other blind people make the leap he did. He got a job at the agency with the ripped up couches. And in 2010, he became the Executive Director of the LightHouse for the Blind and Visually Impaired in San Francisco.

Bashin says that with the right tools and training, blindness can be reduced to the level of inconvenience. "Don't just hide," Bashin said. "This is not a tragedy or shame. This is not some kind of deep loss. This is just another side of being human."

Despite enormous technological gains that have made life vastly easier for blind people in the last decade, there are still significant obstacles to independence. The unemployment rate among working-age blind people is 50 percent — ten times the national average. Job training is expensive, and learning to live independently as a blind person takes time and resources. It's often easier to get disability checks than to find and pay for necessary training.

Bryan Bashin says Donald Sirkin's bequest can help change the way blindness is perceived, by providing more people who have diminished vision with training and skills to achieve self-reliance at work and at home. The money, Bashin says, " is about ... feeling like we can dream and have options and be proud of who we are."

Jeremy Raff/KQED

To really master walking around using a white cane, Bashin says, requires 200 to 400 hours of training with somebody who is being paid to work with you. Learning to use a computer requires that same kind of training.

Through constant fundraising, Bashin's organization has the resources to provide basic services to their clients.

But what Bashin wants is bigger than that: a change in how blindness is perceived. He wants to to encourage more blind people to come "out of the closet," to embrace and celebrate blindness as a difference, and get the skills they need to pursue their ambitions.

Now, suddenly, thanks to this mysterious businessman in Seattle, Bashin and the LightHouse are looking at a different scale of ambition.

"When you get right down to it, the Sirkin bequest is about ... feeling like we can dream and have options and be proud of who we are," Bashin says.

LightHouse for the Blind and Visually Impaired is just beginning its strategic planning process, to decide how to spend the Sirkin money, but Bashin has some ideas.

One major project — which had begun well before the Sirkin grant – is a new headquarters in San Francisco. The building will have expanded facilities, including a dormitory where blind people can stay while they receive training in blind tech, cane navigation, and other necessary skills.

There's also the idea of an award for blind people who do extraordinary things — say, travel around the world independently, or invent some kind of game-changing tool for blind accessibility.

For now, Bashin wants to understand the man behind the donation: This mysterious Seattle businessman, Donald Sirkin, left $125 million to an organization that had never heard of him, with no explanation — just a few legal sentences in a three-page will.

Last year, to try to reconstruct this man from the dead, Bashin made a trip to Seattle, where Don Sirkin had lived. He took a tape recorder and interviewed everyone he could find who had known Sirkin, including Sirkin's ex-girlfriend, a half dozen of his colleagues and good friends.

The interviews reveal a charismatic, idiosyncratic businessman. Sirkin built a hugely successful insurance company from the ground up. He was on a caloric-restriction diet that consisted of large quantities of pomegranate juice and seaweed. He refused to eat in public. His ex-girlfriend Sue Tripp remembers going on a trip to New York with him. But while Sue went to see the Statue of Liberty, Sirkin stayed in the hotel and exercised for hours.

Don Sirkin commanded attention. If left too long in a waiting room, he would walk around on his hands to catch the eye of the receptionist, as change and keys flew out of his pockets. He loved a big gesture, handing out $100-bills to his staff after closing on a big client.

The interviews also reveal a man estranged from his family. Missing from Bashin's tapes are Don Sirkin's children. He had two – a daughter and son. Neither of them wanted to be interviewed. The kids received relatively little from his will: $250,000 apiece, compared to the LightHouse's $125 million.

In May, Sirkin's daughter Anna sued her father's estate. Her complaint says that her father hit her and touched her sexually. She says this happened dozens of times. If she wins, she could get a small percentage of what would otherwise go to the LightHouse. Anna Sirkin told us through her lawyer that she didn't want to talk to us for this story.

As part of the Sirkin bequest, the LightHouse inherited Sirkin's private residence on the edge of the Puget Sound. Last year Bashin and Jennifer Sachs, the LightHouse's Director of Development, went to see it.

Sachs recalls that the house was in disrepair. Crows had pecked away at the shingles. The roof was crumbling. And inside, it was packed with stuff: thousands of books suggesting a vast range of interests; piles of old papers; paintings; plastic clocks stacked on top of each other.

What Bashin wanted, of course, were clues. And pretty quickly, he found them.

"As we wandered through [Sirkin's] house," Bashin said, "we saw all these gadgets: giant light boxes, magnifiers, enormous plasma TVs in his kitchen and throughout his house." Bashin recognized these clues because he'd used them himself, back when he was trying to hide his blindness.

It appeared that Sirkin, too, had lost his sight. He kept it a secret from almost everyone he knew.

Instead of getting help, or learning to use a cane, it seems he'd tried to bring his eyes back with special diets, the pomegranate juice and the caloric restriction.

Sirkin's colleagues said that in his final years, he became more reclusive than ever. He holed up in his house — in a little room off the side of his kitchen.

In that room, Sirkin's heart gave out on him. His body wasn't discovered for days.

To Bryan Bashin, Sirkin is a black box, a mystery. Estranged from his family, reclusive, even to those who worked with him. A guy who also made this dramatic, final gesture – this extravagant gift – to people he had never met.

What Bashin found in Sirkin's home reminded him of his own difficulty in "coming out" as blind. Sirkin couldn't make the leap Bashin did. Instead, he hid. But he also did something else. He left his entire inheritance to a group of people who could have helped him, but didn't get the chance.

This story was produced for KQED's new podcast The Leap, co-hosted by Amy Standen and Judy Campbell. You can subscribe to the podcast through iTunes or Stitcher.

Copyright 2015 KQED Public Media. To see more, visit
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A Doctor Wrestles With Whether To Keep Wearing His White Coat

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Copyright 2015 NPR. To see more, visit
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When Drug Treatment For Narcotic Addiction Never Ends

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

Blake Farmer/NPR

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

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

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

The drugs are intended to be used as steppingstones to getting clean.

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

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

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

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

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

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

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

The spotty results lead some to question how committed some of the clinics are to seeing people through to recovery.

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

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

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

Brian Snyder/Reuters/Landov

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Copyright 2015 NPR. To see more, visit
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Mothers Who Lost Children To Addiction Unite To Change Laws

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

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

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

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

Angus Chen/NPR

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

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

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

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

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

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

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

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

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Brand-Name Drugs Can Raise Costs Without Boosting Patient Satisfaction

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jeff J Mitchell/Getty Images

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Mallory Yu/NPR

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

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

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

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

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

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

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

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

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

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

Avoiding Prenatal Care Out Of Fear

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

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

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

Ari Shapiro/NPR

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

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

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

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

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

Mallory Yu/NPR

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

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

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

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

Treatment Slots Hard To Find

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

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

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

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

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

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

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

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

Births Of Addicted Babies Up In Nashville

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

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

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

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

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

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

Is she having second thoughts about having her children back?

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

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

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A Tiny Pill Monitors Vital Signs From Deep Inside The Body

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

Albert Swiston/MIT

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

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

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

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

Diana Saville / PLoS ONE YouTube

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

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

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

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

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

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

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

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

Albert Swiston/MIT

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Is Sex Once A Week Enough For A Happy Relationship?

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Annie's therapist: Do you have sex often?

Alvy: Hardly ever. Maybe three times a week.

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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Could Atropine Eyedrops Help Reduce Nearsightedness In Children?

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

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

Ryan Kellman/NPR

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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