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Patients Often Aren't Offered Minimally Invasive Surgery

NPR Health Blog - Wed, 03/25/2015 - 12:13pm
Patients Often Aren't Offered Minimally Invasive Surgery March 25, 201512:13 PM ET iStockphoto

It would be nice to think that when you go in for surgery you'd be offered the safest, cheapest alternative, but that's not always the case, a study finds.

Some hospitals are much more likely than others to offer minimally invasive surgery for procedures like colon or lung surgery or appendectomy, according to an analysis published Wednesday in JAMA Surgery.

And that means a higher risk of complications and greater expense, the study found. It looked at 80,000 surgeries in the 2010 National Inpatient Sample, and found that people who had minimally invasive surgery stayed in the hospital about 1.4 days less.

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Minimally invasive surgery reduced the number of complications and saved money, too: a mean of $1,528 for appendectomy; $7,507 for colectomy; and $6,290 for lobectomy. Between 44 and 68 percent of the savings came in reduced medical complications.

Since these surgeries are so common, if all hospitals used minimally invasive surgery as often as the top one third of hospitals they would avoid 4,306 complications and 169,819 days in the hospital, and save $337 million a year.

"We found there were massively divergent rates of adoption," Dr. Martin Makary, a professor of surgery at Johns Hopkins University Medical Center and lead author of the study, told Shots. "I think it's one of the greatest disparities in American medicine."

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The method, also called laparoscopic surgery, involves sticking miniature cameras and tools into the abdomen through very small incisions. Done right it's much less traumatic than open surgery that cuts through abdominal muscles and organs. The first laparascopic appendectomy was done in 1981, and the technique has since become common for many other surgeries, including hysterectomy and gallbladder removal.

Not every surgeon is skilled in minimally invasive surgery, Makary says, and not every patient should get it, especially if the person is very sick or has had lots of surgery. "We do a good job of triaging patients in the emergency room, but we don't do a very good job of triaging patients for surgery."

One reason may be that people are usually referred to a surgeon by their doctor, and that surgeon may or may not do minimally invasive surgery. But patients should ask if they are good candidates, Makary says, and ask for a second opinion if it's not being offered.

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The numbers in this study also include robotic surgery, a form of minimally invasive surgery that has been heavily promoted by hospitals, despite the evidence that it doesn't improve outcomes for most surgeries.

"It's hard to justify why anyone's spending an additional $3,000 for something as simple as taking out a gallbladder, which is so simple and has been perfected with minimally invasive surgery," Makary says.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

Affordable Care Act Makes This Tax Season Painful For Many

NPR Health Blog - Wed, 03/25/2015 - 8:29am
Affordable Care Act Makes This Tax Season Painful For Many March 25, 2015 8:29 AM ET

Partner content from

Michelle Andrews

Tax preparation software doesn't always calculate the complexity of Affordable Care Act subsidies and credits properly.

Daniel Acker/Bloomberg via Getty Images

This tax season, for the first time since the Affordable Care Act passed five years ago, consumers are facing its financial consequences.

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Whether they owe a penalty for not having health insurance, or have to figure out whether they need to pay back part of the subsidy they received to offset the cost of monthly insurance premiums, many people have to contend with new tax forms and calculations.

Christa Avampato, for example, bought a silver plan on the New York health insurance exchange last year. Initially, the 39-year-old was surprised and pleased to learn that she qualified for a $177 premium tax credit that is available to people with incomes between 100 and 400 percent of the federal poverty level. The tax credit, which was sent directly to her health insurer every month, reduced the monthly premium she paid for her $400 plan to $223.

But a big check from a client at the end of last year pushed the self-employed consultant and content creator's income higher than she had estimated. When she filed her 2014 income taxes earlier this month she got the bad news: She must repay $750 of the tax credit she'd received.

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Avampato, who has moved to Florida, paid the bill out of her savings. Since her higher income meant she also owed more money on her federal and state income taxes, repaying the tax credit for her health plan was "just rubbing salt in the wound," Avampato says.

But she's not complaining. The tax credit made her health insurance much more affordable. Going forward, she says, she'll just keep in mind that repayment is a possibility.

It's hard for many people to perfectly estimate their annual income in advance, and changes in family status — such as marriage or divorce —can also throw off that estimate. The size of the premium tax credit is based on a family's income.

Like Avampato, 52 percent of people who enrolled in health insurance plans on the exchanges had to repay part of the subsidy they'd received to offset premiums. That's according to an analysis by H&R Block of the first six weeks of returns filed through the tax preparer. The average repayment was $530, while about a third of marketplace enrollees got a tax credit refund of $365, on average, according to H&R Block.

The amount that people have to repay has a cap that's based on their income. People whose income tops 400 percent of poverty ($45,960 for an individual) have to repay the entire premium tax credit.

The message for taxpayers is clear: If your income or family status changes, go back to the insurance marketplace now — and as necessary throughout the year — to make adjustments so you can minimize repayment issues when 2015 taxes are due.

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Some people owe a penalty for not having health insurance. For 2014, the penalty is the greater of $95 or 1 percent of income. The H&R Block analysis found that the average penalty people paid for not having insurance was $172.

Consumers who learn they owe a penalty when they file their 2014 taxes can qualify for a special enrollment period to buy 2015 coverage, if they haven't already done so. That would protect them against a penalty on their next return.

Also, tax filers may be able to avoid the penalty by qualifying for an exemption.

Tax preparers often use software to help them complete people's returns, and the software includes the forms to apply for exemptions. For the most part, the software is up to the task, says Tara Straw, a health policy analyst at the Center on Budget and Policy Priorities who manages a Volunteer Income Tax Assistance site in the District of Columbia. But it comes up short with some of the more complicated calculations, she says.

A case in point: applying for the exemption from the health insurance requirement because coverage is unaffordable. Under the health law, if the minimum amount people would have to pay for employer coverage or a bronze level health plan is more than 8 percent of their household's income they don't have to buy insurance. That situation is likely to be one of the most common reasons for claiming an exemption.

But to figure out whether someone qualifies, the software would have to incorporate details such as the cost of the second lowest-cost silver plan available in that region, as well as the lowest cost bronze plan. The software can't do that, so tax preparers must complete the information by hand.

"That one, in particular," Straw says, "has been vexing."

Copyright 2015 Kaiser Health News. To see more, visit http://www.kaiserhealthnews.org/.
Categories: NPR Blogs

Feds Claim Obamacare Launch Is Hindering Government Transparency

NPR Health Blog - Tue, 03/24/2015 - 11:31am
Feds Claim Obamacare Launch Is Hindering Government Transparency March 24, 201511:31 AM ET Fred Schulte

Unfilled requests for public records are piling up as the government claims it is being overwhelmed by Obamacare.

Bjorn Rune Lie/Ikon Images/Getty Images

A heavy workload caused by the Affordable Care Act, government technology limits and staff shortages are causing unusually long delays in filling public records requests, federal health officials say.

The waits in some cases could stretch out a decade or more.

The Freedom of Information Act requires federal agencies to respond to records requests in 20 working days, though providing documents often takes much longer. The FBI, for instance, recently reported that complex requests could average more than two years to fill.

"I have never heard of Obamacare being given as a reason for things taking a long time."

The Centers for Medicare and Medicaid Services has a backlog of some 3,000 FOIA requests and says it may need 10 years or more to dig out from under some large cases.

The Justice Department disclosed the bottleneck in court papers filed Friday in a FOIA lawsuit brought by the Center for Public Integrity against the Department of Health and Human Services, the parent agency of CMS.

The suit, filed in May 2014, seeks a broad array of records as part of the Center's ongoing investigation into overcharges by private Medicare Advantage insurance plans for the elderly. The center filed suit after failing to receive any records as a result of its initial FOIA request in 2013.

In its court filing, the Justice Department argued that CMS resources "have been placed under unusual strain" in the past year due to demands of launching Obamacare.

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"The ability of HHS to meet its obligations under the FOIA is limited by the scarcity of its available resources," officials wrote. The CMS office that handles FOIA requests has "only a staff of 19 people to discharge the agency's FOIA responsibilities," officials wrote.

Justice Department lawyers also said CMS has been "handicapped by a lack of technology."

That's particularly the case when it comes to providing email communications. CMS said it has about 80 gigabytes of information, mostly emails, stored on software for delivery in other FOIA lawsuits, which it said came to 8 million pages.

Looking for more, the agency said, is "already straining labor hours and budget of the FOIA staff." CMS said it had only recently acquired software which should speed things up.

Liz Hempowicz, a public policy associate at the Project on Government Oversight in Washington, dubbed the status quo "ridiculous." "I think the excuse that record keeping is not up to date is absurd in 2015," she said. "These agencies need to get record keeping systems up to date. It shouldn't take that long."

The emails CMS has delivered to the Center for Public Integrity so far have been less than revelatory. Scores of messages in which CMS officials appear to be discussing important policy matters, such as how generously to pay Medicare Advantage plans, are totally blacked out.

Justice lawyers called 2014 an "unusual year" for CMS because the open enrollment period for Obamacare health insurance exchanges "was a period of high activity at the agency." CMS also is dealing with a "significant number of requests" for records about the exchanges.

Given the workload, the Justice Department asked for court approval to hand over 500 pages of Medicare Advantage records every two months, a pace that the center argues would require 16 to 25 years to disgorge all the Medicare Advantage records the government says exist. The center did receive 1,144 pages of records in January and 587 in March, though some of that material was available on public websites.

On Monday, U.S. District Judge John D. Bates ordered HHS to process at least 1,000 pages per month for April, May and June, and directed the parties in the lawsuit to confer with an eye toward both narrowing the center's request and agreeing on a "production schedule." The judge set a hearing on the issue for June 4.

Bates noted that the center was seeking a "very extensive volume" of documents. "And the Court recognizes that defendant is currently strained by a number of other voluminous FOIA requests. But – be that as it may – the Court is deeply concerned about a proposed production schedule that may take decades to complete," he wrote.

Even some advocates who've grown accustomed to tales of FOIA woes were surprised at the government's stretched out time frame and its decision to lay the blame for delays at least partly on Obamacare.

"I have never heard of Obamacare being given as a reason for things taking a long time," said Hempowicz, of the Project on Government Oversight. She said that "superlong turnaround times" are sometimes used to deter people from seeking records. "That's my feeling," she said.

This piece comes from the Center for Public Integrity, a nonpartisan, nonprofit investigative news organization. For more, follow the center on Twitter @Publici, or sign up for its newsletter.

Copyright 2015 The Center for Public Integrity. To see more, visit .
Categories: NPR Blogs

Quality-Testing Legal Marijuana: Strong But Not Always Clean

NPR Health Blog - Tue, 03/24/2015 - 11:22am
Quality-Testing Legal Marijuana: Strong But Not Always Clean March 24, 201511:22 AM ET Poncie Rutsch Andrey Saprykin/iStockphoto

Recreational marijuana has been legalized in four states, but that doesn't mean it's a tested consumer product. Some of those potent buds are covered in fungus while others contain traces of butane, according to an analysis of marijuana in Colorado.

Last May, after people began getting sick from edible marijuana products, the state of Colorado began requiring all products to be tested. Washington has mandated testing too, with a detailed checklist of items to analyze, including potency, contaminants, moisture and microbiology.

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Marijuana testing is a new phenomenon. Even though people have been purchasing medical marijuana in Washington since 1998, the state never mandated testing until it approved recreational marijuana in 2013. Other states are still in the process of building a list of requirements for marijuana testing.

Each state has licensed private labs to analyze the products; they charges manufacturers a fee. Consumers can find some parts of the results, such as potency, printed on packaging, while others are available by request. And the lab must be independent from the producer and manufacturer; there's no in-house testing like there is in the cigarette industry.

So what are labs looking for? First, it's important that manufacturers and producers show how potent the weed is, kind of like printing the alcohol content on a bottle label.

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"It became very clear [that we needed to test for potency] when we had people coming in from out of state," Mary Meek, director of business development for CHARAS Scientific, a Denver lab, tells Shots. "We had 21 years olds coming in on spring break and getting sick," she explains.

Because many growers don't yet test their weed for potency, two buds might vary in their THC content – and in effects. So even if a manufacturer uses the same recipe every time, their products might vary from brownie to brownie.

Since labs like CHARAS Scientific are the ones evaluating every marijuana product, they are the ones who can use their analyses to look for trends. They presented some of their findings on Monday at an American Chemical Society meeting in Denver.

They found that marijuana's potency has been increasing, with THC content as high as 30 percent. That's about three times stronger than marijuana in the 1980s. THC is the component that produces the marijuana high.

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Mikhail Carpenter, a spokesperson with the Washington State Liquor Control Board, told Shots that some of the labs in Washington have seen THC levels as high as 40 percent.

As THC levels climb, the levels of cannabidiol, or CBD, have been declining. That's problematic for medicinal marijuana users since it is more often associated with medical benefits than THC.

"They kind of counteract each other," explains Meek. "You have these artisan growers that have been focused on cross breeding for THC and they've been losing CBD."

And then there are the contaminants. Many of marijuana products contain traces of butane, a chemical used to extract the potent THC from marijuana buds. Bacteria and fungi can grow anywhere, and sure enough, they're growing on marijuana buds, which means that they're in marijuana products.

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"I think it's rare that you would ever find zero fungal growth," says Meek. "But what we're testing for is the stuff that will make you sick." Neither she nor the state of Colorado want to see E. coli or Salmonella in marijuana products.

To add to the complication, Meek and her colleagues have to think about how each product will be used. "There's no data for what the consequences would be for smoking rather than consuming," she says. The jury's still out on how smoking E. coli might impact human health.

For now, the goal is to find an acceptable level for contaminants in marijuana products, just as the FDA requires manufacturers to test food and hygiene products for bacterial contamination. Meek thinks this is only the beginning. "Eventually it will all have to be on the label," she says.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

Even In Nursing, Men Earn More Than Women

NPR Health Blog - Tue, 03/24/2015 - 11:01am
Even In Nursing, Men Earn More Than Women March 24, 201511:01 AM ET

Partner content from

Julie Rovner

If he's a nurse anesthetist, he could be making $17,290 a year more than his female counterparts.

iStockphoto

Women outnumber men in the nursing profession by more than 10 to 1. But men still earn more, a new study finds.

Even after controlling for age, race, marital status and children in the home, males in nursing outearned females by nearly $7,700 per year in outpatient settings and nearly $3,900 in hospitals.

And as men flowed into nursing over the past decades, the pay gap did not narrow over the years studied: 1988 to 2013. The report was published Tuesday in JAMA, the journal of the American Medical Association.

Men made up about 9 percent of registered nurses in 2011, according to the Census Bureau, roughly a threefold increase from 1970. And even though men were not permitted in nursing programs at some schools until the 1980s, they have overall earned more, just as in society at large.

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The biggest disparity was for nurse anesthetists, with men earning $17,290 more.

The data don't suggest why men earn more, according to Ulrike Muench, an assistant professor of nursing at the University of California, San Francisco, and the study's lead author. Though "some have suggested men have better negotiating skills" and are able to start out earning higher salaries, she says.

Jennifer Stewart, who oversees nursing and other workforce issues at the health research group The Advisory Board, agrees that's one possibility. "Also maybe some gender discrimination," she adds.

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But most people who study nursing trends say this is a difficult problem to sort out.

For example, Stewart says that because men have joined the profession more recently, women tend to be more senior nurses. But as such, they get to work preferred day shifts, even though night and weekend shifts tend to pay more.

Peter McMenamin, a health economist at the American Nurses Association, says that while ANA policy "is that there should be pay equity," he's not convinced the problem is as large as the study suggests. For one thing, he says, with so many women compared to men in the study, the numbers for women "are much more precise."

But no one questions the overall finding that men outearn women. And that is "dismaying," says McMenamin. "We would like any differentials in pay to be based on skills and experience and not on gender," he says.

The study analyzed data from the National Sample Survey of Registered Nurses, which ended in 2008, as well as from the Census Bureau's American Community Survey for 2001 to 2013.

Copyright 2015 Kaiser Health News. To see more, visit http://www.kaiserhealthnews.org/.
Categories: NPR Blogs

Many Doctors Who Diagnose Alzheimer's Fail To Tell The Patient

NPR Health Blog - Tue, 03/24/2015 - 3:42am
Many Doctors Who Diagnose Alzheimer's Fail To Tell The Patient March 24, 2015 3:42 AM ET Listen to the Story 3 min 18 sec  

When combined with results of other neurological tests, and in the context of a thorough medical history, atrophy of the brain (shown here in an MRI scan) sometimes indicates Alzheimer's.

Simon Fraser/Science Source

Doctors are much more likely to level with patients who have cancer than patients who have Alzheimer's, according to a report released this week by the Alzheimer's Association.

The report found that just 45 percent of Medicare patients who'd been diagnosed with Alzheimer's said they were informed of the diagnosis by their doctor. By contrast, more than 90 percent of Medicare patients with cancer said they were told by their doctor.

"What we found is really shocking," says Beth Kallmyer, vice president of constituent services for the Alzheimer's Association.

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"This is reminiscent of what happened in the 1960s and 1970s with cancer," she says. "But that's changed now, and it really needs to change for Alzheimer's as well."

For years, the association's help line has been receiving complaints from family members who say that doctors are reluctant to reveal an Alzheimer's diagnosis, Kallmyer says. So the association decided to investigate by studying medical records and survey results from Medicare recipients.

To make sure that Alzheimer's patients hadn't simply forgotten what a doctor said, the group also looked at Medicare survey responses from family members and other caregivers. The result wasn't much better: Just 53 percent said a doctor told them of the patient's diagnosis.

The report also found that patients with advanced Alzheimer's were more likely to say they'd been told than people in the early stages of the disease.

One reason doctors often cite for not telling patients is the time constraints of a typically short appointment, says Keith Fargo, director of scientific programs at the Alzheimer's Association. "It's difficult to disclose a diagnosis of a fatal brain disease in just a few minutes," he says.

It's also hard for doctors to tell patients they have a disease that can't be stopped or even slowed down by a drug or surgery, Fargo says. And, he says, doctors often fear the emotional reaction an Alzheimer's diagnosis can cause.

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The Alzheimer's Association recommends this video to primary care providers as an example of a doctor who honestly and gently informs a patient and her husband of her diagnosis.

But doctors need to change their behavior for the sake of their patients, Fargo says.

"By the time you get to a point where you can be diagnosed with Alzheimer's disease you are already beginning to experience a loss of some of your cognitive functions," he says. "That's distressing. And to not know why is confusing, and can be frightening."

Patients with Alzheimer's should be told, even though it's not an easy thing to do, says Dr. Pierre Tariot, a geriatric psychiatrist who directs the Banner Alzheimer's Institute in Phoenix.

Tariot can't remember the first time he informed someone they had Alzheimer's, but he's pretty certain it didn't go well. "I'm sure that I squirmed," he says. "I'm sure that I was uncomfortable and somewhat vague and evasive."

Tariot says he has gotten better, in part because he has learned to anticipate the questions he's likely to get from patients and family members: " 'Is there anything we can do?' 'Am I going to get worse?' 'When am I going to die?' or 'When is she going to die?' "

And, over the past several decades, Tariot has learned that his patients are grateful when he is honest about what is happening to their brain. "People are relieved, not distressed," he says. "They're relieved to have somebody who knows what's going on and gives a message of at least some hope ... a message that, 'We will stand by and navigate this process with you.' "

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
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How 2 Children With Leukemia Helped Transform Its Treatment

NPR Health Blog - Tue, 03/24/2015 - 3:38am
How 2 Children With Leukemia Helped Transform Its Treatment March 24, 2015 3:38 AM ET

from

Amanda Aronczyk Listen to the Story 7 min 22 sec  

Both James Eversull (left) and Pat Patchell were treated with experimental chemotherapy and radiation for leukemia as children in the 1960s. Together, they're now some of the country's oldest leukemia survivors..

Courtesy of James Eversull; Courtesy of Pat Patchell

When children are diagnosed with acute lymphoblastic leukemia now, they have more than a 90 percent chance of survival.

But when James Eversull was told he had leukemia in 1964, there wasn't much hope.

He was just 18 months old when his parents discovered what was wrong.

He says he remembers as an older toddler overhearing his family and doctors discussing his illness. "My nickname was 'Jimmy,' and they would say 'Jimmy with cancer, Jimmy with cancer,' " he said. "Because you say cancer back in the 1960s, and they think if you touch them you're going to catch it."

Eversull's parents were determined to help him. The family drove almost 400 miles from their home in Louisiana to St. Jude Children's Research Hospital in Memphis, Tenn.

St. Jude was named after the patron saint of lost causes for a reason.

"These children were often turned away," said Dr. Donald Pinkel about his years as a young doctor in the 1950s. He went on to become the first medical director at St. Jude. "A lot of physicians just didn't want to handle this situation — it was so sad."

  • Hide caption Dr Donald Pinkel, first medical director at St. Jude, led the hospital's leukemia research trials in the 1960s. Previous Next Courtesy of St. Jude Children's Research Hospital
  • Hide caption Dr. Donald Pinkel meets with a family at St. Jude. Previous Next Courtesy of St. Jude Children's Research Hospital
  • Hide caption St. Jude was founded by performer Danny Thomas in 1960. St. Jude is the patron saint of hope and impossible causes. Previous Next Courtesy of St. Jude Children's Research Hospital
  • Hide caption Danny Thomas looks through a microscope as Dr. Donald Pinkel stands just behind him. Previous Next Courtesy of St. Jude Children's Research Hospital

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Eversull's mother, Brenda, who was 19 years old at the time, said the hospital was not an encouraging sight. "All during that day, I kept seeing kids die," she said.

She was scared, but she didn't think Jimmy looked as sick as the other children she saw in the hallways. "Tubes coming out here and there ... it was horrible. I just wanted to take my son and go home."

But the physicians at St. Jude were trying something new: a chemotherapy drug cocktail paired with radiation. They called it "Total Therapy III." It's a variation of what most acute lymphoblastic leukemia patients still get today. But patients like Eversull, acting as guinea pigs, were among the first ones to try it.

A few years ago, cancer survivor James Eversull was told that he needed to lose weight and exercise. He took his doctor's orders seriously and today is an avid marathon runner.

Amanda Aronczyk/WNYC

"You say experimental, you know, and I'm thinking, oh my God, like Young Frankenstein or Dr. Jekyll and Mr. Hyde," Eversull said. "You're giving me something and you don't even know what it's going to do?"

This was an era before experiments on humans were closely regulated. Pinkel had an advisory board for difficult ethical questions. It wasn't as though the doctors had no oversight.

But Pinkel and his colleagues thought experimenting with toxic treatments was worth the risk of making the kids sicker. They didn't know if the kids would survive otherwise.

"It was very difficult," Pinkel said. "You have to be very careful in these early phases because you could shove them over the brink with your therapy."

Chemotherapy was showing promise for some young patients, but the challenge was maintaining remission.

Pat Patchell was diagnosed with cancer when he was 11. At age 62, he is one the country's oldest survivors of childhood leukemia.

Courtesy of St. Jude Children's Research Hospital

What distinguished Total Therapy III from earlier protocols was the use of radiation to the brain to avoid relapses. The treatment would result in a lasting remission for many of the children, but the doctors feared cognitive problems later in life. The challenge became deciding when to take the children off the treatment.

"I do remember one doctor said, 'You stay with the winning horse,' " said Pat Patchell, 62, one of St. Jude's oldest leukemia survivors.

"I think it was a pretty big decision on their part," Patchell said. "It was very much unknown territory. That's why they kept an eye on me for so long. I was into my 30s before I stopped coming back every year."

Find other stories in the Living Cancer series at WNYC.org.

WNYC

Both Patchell and Eversull still return to St. Jude for periodic checkups. Of the 26 children who started Total Therapy III treatments in the early 1960s, only five made it to adulthood. Three are alive today.

Still, the research was a crucial step in developing a treatment for acute lymphoblastic leukemia. "Total III was the breakthrough," said Pinkel. "That's where we got cures and that's where we have patients today who are up there in age now and are alive and well."

When these men were patients the chance of surviving was less than 5 percent, but a decade later, thanks in part to this work, oncologists could start to say there was a cure for acute lymphoblastic leukemia.

Our series is produced with member station WNYC, and with Ken Burns Presents: Cancer: The Emperor of All Maladies, which will air on PBS starting March 30. Check your local listings for broadcast times.

Copyright 2015 WNYC Radio. To see more, visit http://www.wnyc.org/.
Categories: NPR Blogs

States That Expand Medicaid Detect More Cases Of Diabetes

NPR Health Blog - Mon, 03/23/2015 - 6:56pm
States That Expand Medicaid Detect More Cases Of Diabetes March 23, 2015 6:56 PM ET Listen to the Story 3 min 44 sec  

Johnny Reynolds ignored diabetes symptoms and put off going to the doctor for years when he didn't have health insurance. He was afraid he couldn't afford treatment.

Anders Kelto/NPR

Johnny Reynolds knew that something was wrong as far back as 2003. That's when he first started experiencing extreme fatigue.

Medicaid Expansion, By State Notes – "Under discussion" indicates executive activity supporting adopting Medicaid expansion.
– Arkansas, Iowa, Indiana, Michigan, New Hampshire and Pennsylvania have received Section 1115 waivers from the federal government.
– Wisconsin covers adults up to 100 percent of the federal poverty level in Medicaid, but did not adopt the Affordable Care Act expansion.

Source: "Status of State Action on the Medicaid Expansion Decision," KFF State Health Facts (as of March 6, 2015)

Credit: NPR

"It was like waking up every morning and just putting a person over my shoulders and walking around with them all day long," says Reynolds, 54, who lived in Ohio at the time.

In addition, Reynolds was constantly thirsty and drank so much water that he would urinate 20 or 30 times per day. "And overnight I would probably get up at least eight or nine times a night," he says.

Reynolds was working as a cook, broiling steaks at a small, family-run restaurant in Dayton. From a health insurance standpoint, he was stuck. His job didn't provide it, yet he made too much money to qualify for Medicaid in Ohio.

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He was scared that if he went to the doctor he might end up with a huge bill. So despite having all the telltale signs of Type II diabetes, he just kept working.

"It was just something that you grin and bear, you know, just go through your daily [routine], get done with what you need to do, and come home and try to get as much rest as you can for the next day," he says.

Reynolds' situation may sound extreme, but putting off visits to the doctor because you don't have insurance is common, says Dr. Vivian Fonseca, a professor of medicine and endocrinology at Tulane University, in New Orleans. And that's particularly a problem for people with diabetes, he says.

"We've known for a long, long time that a lot of people with Type II diabetes go unrecognized for many years because they don't get screened," Fonseca says. And one of the main reasons they don't get screened, he says, is that they don't have health insurance.

Fonseca and his colleagues wondered whether Medicaid expansion under the Affordable Care Act, which became law five years ago Monday, has improved the detection of diabetes. That possibility seemed likely because more poor people now have insurance.

In 2012, the Supreme Court ruled that states could choose whether to expand their Medicaid programs under the ACA. In January 2014, about half the states, including Ohio, expanded and about half did not. This created what Fonseca calls a natural experiment — an opportunity to compare the impact of Medicaid programs on diabetes care.

Using data collected by the clinical laboratory Quest Diagnostics, Fonseca and his colleagues first looked at states that did not expand Medicaid. They saw a very small percentage increase (compared to the previous year) in diabetes diagnoses.

Then they looked at states that expanded Medicaid, and saw, among Medicaid patients, a much bigger increase — 23 percent. That translated into thousands of people with previously undiagnosed Type II diabetes being discovered because of Medicaid's expansion, Fonseca says. He and his colleagues have published the study online this week in Diabetes Care, the journal of the American Diabetes Association.

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Dr. Robert Ratner, the chief medical officer for the American Diabetes Association, says the study is important because early diagnosis and treatment are particularly crucial with diabetes. Left untreated, the disease can lead to blindness, heart attack, kidney failure or complications that require amputation of the foot or leg.

"Early and aggressive therapy of diabetes has a major impact on long-term complications and on quality of life," Ratner says.

Early intervention may also reduce long-term costs, which account for a large percentage of overall health care spending.

But Ratner points out an irony of the study: Many of the states that did not expand Medicaid are in what he calls the "diabetes belt." It's a region stretching from Louisiana to North Carolina.

"Those states that did not expand Medicaid missed that opportunity and they still have large percentages of people, perhaps as high as 20 percent, living with diabetes who don't know it," he says.

Johnny Reynolds eventually left Ohio and moved to Washington, D.C. After years of living without insurance, he was finally able to get on Medicaid in the District, which has a higher income cap for eligibility than Ohio does.

But it didn't happen without a scare. When he finally went to see the doctor, he was on the verge of a diabetic coma and was told he could have died.

Now he's on insulin, sees his doctor regularly, and has learned to control his diet, with help from a nutritionist. He's keeping his blood sugar in a normal range now and says he feels much better.

There's one thing he's still getting used to, he says — the feeling of having health insurance.

"This is something new to me — to have, you know, constant care," Reynolds says. "It almost makes you feel like royalty."

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

Why The War On Cancer Hasn't Been Won

NPR Health Blog - Mon, 03/23/2015 - 4:00pm
Why The War On Cancer Hasn't Been Won March 23, 2015 4:00 PM ET Listen to the Story 5 min 58 sec   Vidhya Nagarajan for NPR

When President Richard Nixon declared a war on cancer in 1971, there were high hopes that scientists were close enough to understanding the underlying causes that many cures were within reach.

We obviously haven't won the war.

In fact, a prominent cancer biologist argues that the conceptual framework for understanding cancer has come full circle over the past 40 years.

MIT biologist Robert Weinberg made that provocative comment in an essay he wrote last year for the journal Cell. He's a luminary in the world of cancer and is a founding member of the Whitehead Institute for Biomedical Research in Cambrdige, Mass.

Shots - Health News Stats Split On Progress Against Cancer

His argument goes like this.

In the 1950s, medical researchers saw cancer as "an extremely complicated process that needed to be described in hundreds, if not thousands of different ways," Weinberg says.

Then, scientists started glimpsing what they thought were simplifying principles. The first idea, which helped spur the government's war on cancer, was that viruses were the prime drivers of human cancers. That proved not to be the case.

As that idea faded, it was replaced by the notion that cancer is all about wayward genes.

"The thought, at least in the early 1980s, was that were a small number of these mutant, cancer-causing oncogenes, and therefore that one could understand a whole disparate group of cancers simply by studying these mutant genes that seemed to be present in many of them," Weinberg says. "And this gave the notion, the illusion over the ensuing years, that we would be able to understand the laws of cancer formation the way we understand, with some simplicity, the laws of physics, for example."

Robert Weinberg, founding member of the Whitehead Institute for Biomedical Research, wrote an essay last year arguing that the conceptual understanding of cancer has come full circle.

Courtesy of Whitehead Institute for Biomedical Research

But as scientists delved into cancer genes, the unifying principles gradually evaporated.

"Over the last 10 to 15 years we began to accumulate once again an overwhelming mass of information that cancer is indeed a highly complex process, and that attempts at distilling it down to a small number of simple processes may not really work that easily," Weinberg says. "And so we're once again caught in this quandary: How can we understand this complexity in terms of a small number of underlying basic principles?"

From the vantage point of 2015, it appears that those simplifying principles may not exist. "I think it may have been wishful thinking to think that a disease like cancer was simple to begin with," says Dr. Victor Velculescu, a professor of oncology and co-director of cancer biology at the Johns Hopkins University School of Medicine.

He says it has become clear that cancer isn't a single disease or even a hundred different diseases. "Between everybody that has cancer today, to everybody that's probably ever had cancer since the beginning of humankind, [each person] has had different molecular alterations in this disease," he says.

So you could say each case of cancer is a unique disease.

"The other complicating thing is that cancers aren't static, they actually change over time," he adds, morphing within each patient. That's why a treatment that works for a while often loses its punch, and why doctors have to search for some other treatment.

These bedside observations match what scientists had been discovering in the lab. Velculescu says there aren't just a few cancer genes. It turns out many genes can be damaged and can contribute to the process of malignancy. "But it also became clear that we could simplify these genetic changes into certain pathways," he says.

Pathways are something like assembly lines within the cells — the chemical steps that keep the cells alive and functioning. Each gene creates a station along that assembly line.

Scientists have discovered there are many different ways for these pathways to break down, leading to cancer. "And some of them were pathways that people had been thinking were important in cancer and some were totally new," Velculescu says.

Find other stories in the Living Cancer series at WNYC.org.

WNYC

Those pathways provide potential places to block the progress of cancer, with drugs. The Novartis drug Gleevec, for example, blocks just one pathway and stops certain cancers. Other drugs block other pathways, not as dramatically perhaps, but still with benefit to patients. Pfizer's Ibrance was recently approved for certain types of breast cancer, to mention just one other.

Finding these pathways and then identifying drugs that will block them, has been a big step up from simple trial-and-error.

"It's made for a much more cost-efficient and time-efficient process, and you really are seeing a lot of drugs appear now to treat different cancers," says Dr. William Nelson, director of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins.

But here's where the complex reality of cancer raises its head again. Only rarely can a single drug block a single pathway and, by so doing, stop a cancer. Nelson expects that most cancers will require a combination of drugs.

"And if we'll need treatment combinations, how many combinations will we need?" he wonders. There aren't simply a dozen pathways, or even a few hundred. Nobody has found them all, but there are potentially thousands.

"It's hard to imagine taking a thousand different agents. I don't think that's what we'll end up with. But I think it's a real question as you look forward."

This strategy can get expensive quickly, especially if drug companies keep setting prices around $100,000 a year for each new therapy. Challenges in cancer treatment go far beyond the biological complexity.

And that brings us back to Weinberg's essay. He's actually not defeated by the notion that the intellectual framework for understanding cancer has come full circle. After all, over these 40 years, many ideas have flowed from labs and led to incremental advances in treating cancer.

"The war on cancer will not be won in one dramatic battle, it will be a series of skirmishes," he says.

In fact, that's how the war on cancer has been waged all along.

Our series is produced with member station WNYC, and with Ken Burns Presents: Cancer: The Emperor of All Maladies, which will air on PBS starting March 30. Check your local listings for broadcast times.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

Stats Split On Progress Against Cancer

NPR Health Blog - Mon, 03/23/2015 - 3:53pm
Stats Split On Progress Against Cancer March 23, 2015 3:53 PM ET

When someone asks whether we're winning the war on cancer, the discussion often veers into the world of numbers. And, depending on which numbers you're looking at, the answer can either be yes or no.

Let's start with the no.

The number of cancer deaths in this country is on the rise. It climbed 4 percent between 2000 and 2011, the latest year in official statistics. More than 577,000 people died of cancer in 2011. That's almost a quarter of all deaths. Those aren't just personal tragedies – the figure represents a growing burden on America.

"It's hard to think of winning a war when more and more people are going into the battlefield every day," says Clifton Leaf, author of The Truth in Small Doses: Why We're Losing the War on Cancer — and How to Win It.

Find other stories in the Living Cancer series at WNYC.org.

WNYC

For most of the common types of cancer, there has only been incremental progress in improving treatments – especially in advanced cancers, where lives may only be prolonged for a few years.

"If you look at the late-stage disease for those intractable cancers, the deadly dozen or so, we really haven't made staggering progress," Leaf says. He's not dismissing the importance of those small improvements, but "the question is whether we're using the right strategy to be where we want to be a decade from now," he says. "Those targeted medicines are just nipping at the corners,"

As a result of the ever-growing numbers, there's a need for more doctors to treat the disease, more hospital beds in oncology wards, and more money to pay the ever growing bills for cancer treatment.

National Cancer Institute scientists project that the cost of treating cancer will reach $173 billion in 2020, which is a 39 percent increase over those costs in 2010. That assumes a modest 2 percent inflation rate for the cost of cancer treatment.

It doesn't take into account the soaring costs of cancer drugs. A commentary in the journal Cancer finds that the price of new chemotherapy drugs has jumped from under $10,000 a year in 2000 to more than $100,000 a year in 2012. And more expensive new drugs are in the pipeline, portending higher prices.

Shots - Health News Why The War On Cancer Hasn't Been Won

But there's another, more encouraging way to look at the war on cancer. This is how the yes-we're-winning camp does it. While the number of cancer deaths grew by 4 percent between 2000 and 2011, the total U.S. population grew by 10 percent. That means the proportion of Americans dying from cancer is actually declining. What's more, cancer is mostly a disease of older people, and they are making up an increasing share of the population. So if there were no progress in stopping cancer, the number of cancer deaths would be climbing much faster than it is.

Statisticians have a way to account for those dramatic changes to the population. Instead of simply counting the number of people who die of cancer, they look at the number of deaths as a fraction of the population. That provides a rate rather than a simple number. They correct for the aging of the population with a process called age adjustment or age standardization. (Robert Anderson and a colleague at the National Center for Health Statistics explain this in detail in an old but still pertinent article.)

Using that widely accepted technique, the death rate from cancer actually declined 15 percent between 2000 and 2011. Yes, the total number of deaths is up, but the rate, measuring annual deaths as a proportion of the population, is falling. Organizations like the American Cancer Society point to those rates to argue that we're making progress in the war on cancer.

It's worth looking at the details behind this decline. Cancer is not one disease, but more than 100, and each one has its own story. About half of all cancer deaths are from just four different types: lung, colon, breast and prostate.

Each has a different story:

  • Lung cancer rates are declining largely because millions of Americans have quit smoking.
  • Breast cancer incidence rates dropped sharply in 2002, after doctors stopped routinely prescribing hormones to postmenopausal women, and they have leveled off since. Early detection and treatment improvements are driving the recent decrease in breast cancer mortality.
  • Colon cancer death rates are also declining, in part because colonoscopy screening is finding polyps before they turn cancerous. Treatment has improved, too.
  • Prostate cancer death rates are declining largely because of improvements in treatment.

When Dr. William Nelson first started treating men with prostate cancer early in his career, he says treatment would help a bit, but "usually within a year or two, the disease would roar back and threaten their life, and usually they didn't live very long."

"Today it's completely different," he says. "If you look at men with advanced prostate cancer, they often live a decade or more." And though surgery and radiation treatments can have unpleasant side effects, the men aren't suffering in pain as used to be the case.

He says it's a "night-and-day difference" from when he started treating this disease, says Nelson, director of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins.

Together, mortality numbers and mortality rates are the most robust ways to measure progress on the cancer front, but scientists also sometimes present five-year survival rates.

The Centers for Disease Control and Prevention has recently added that measure to its cancer statistics. Overall, CDC concludes that 2 out of 3 people who are diagnosed with invasive cancer are alive five years later. This varies widely based on the type of cancer.

One shortcoming is that cancer is sometimes overdiagnosed, yet these rates include people who survived cancers (such as some cases of prostate cancer) that grow so slowly they were unlikely to be fatal anyway. The approach also fails to account for people who die of cancer more than five years after diagnosis, so it's not the strongest measure of progress against cancer.

That said, the five-year survival rate has been gradually improving. That means the number of people alive with cancer continues to grow. The American Cancer Society estimates that there are more than 14 million people living with cancer in the U.S. right now. That, in turn, affects the cost of caring for cancer throughout the country.

Those costs not only affect the patients and their families; it also falls on taxpayers and people who buy health insurance. They are indirectly paying for a lot of that care.

Our series is produced with member station WNYC, and with Ken Burns Presents: Cancer: The Emperor of All Maladies, which will air on PBS starting March 30. Check your local listings for broadcast times.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

If You're Going To Die Soon, Do You Really Need Statins?

NPR Health Blog - Mon, 03/23/2015 - 1:17pm
If You're Going To Die Soon, Do You Really Need Statins? March 23, 2015 1:17 PM ET iStockphoto

It's easy to get put on statins, and it can be surprisingly hard to get off them. That's true even for people who are terminally ill and might have bigger concerns than reducing their cardiovascular risk.

People approaching the end of life who did stop statins were not more likely to have a heart attack or stroke than those who kept taking the drugs, according to researchers who tested the idea.

Most of the researchers take care of people with serious illnesses and were struggling with the question of if or when their patients should stop taking medications to prevent disease.

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"What does it mean to a patient when you say it's OK to stop taking a medication?" asks Dr. Jean Kutner, a professor of medicine at the University of Colorado's Anschutz School of Medicine and lead author of the study.

She and her colleagues realized they didn't know whether it's safe for people with a terminal illness to stop statins. And they didn't know how patients would feel about that. When people start statins, Kutner says, they're often told they'll be on them for the rest of their lives. "And then I come back around and say you don't need this anymore."

To answer the safety question, Kutner and colleagues recruited 381 people who were being treated at 15 medical organizations that are part of a palliative care research cooperative. Almost half of the people had cancer; 58 percent had cardiovascular disease; and one-third of participants were enrolled in hospice.

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Going off statins didn't cause a significant increase in heart attack risks or hasten death, the study found. People lived about seven months from the start of the study. And though there weren't significant differences in quality of life, people did say they felt better and were happier to be taking fewer medications.

And getting off statins saved $716 per patients. The results were published Monday in JAMA Internal Medicine.

This gives doctors the option of asking patients if they'd like to stop the statins, Kutner says. She'd frame it like this: "For people in your situation it appears safe to stop the medication; you may actually feel a little bit better without it."

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Some people may feel that preventing a possible stroke is so important they prefer remaining on it, she says, "and another may say, 'Thank goodness I actually get to stop a med.' "

And just as patients may have wildly varied responses to the idea of stopping a preventive medication, doctors do, too, Kutner says. "We got the whole spectrum from 'No way, this patient needs to stay on statins' to 'Wow, what a good idea, we should be doing this more often.' "

And "doing it more often" could also apply to people who aren't in the final months of their lives.

About 30 percent of people over 65 are regularly prescribed five or more drugs, and many of those may be unnecessary or dangerous, an article accompanying the study finds. But deciding when to "deprescribe" can be dicey.

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Older people are particularly vulnerable to high-risk drugs like opioids, benzodiazepines, anticoagulants and NSAIDS, this article notes, and people who are near the end of life won't gain much from statins or drugs to prevent osteoporosis.

Drugs with the greatest harm and least benefit should be discontinued first, the authors conclude, while also considering how hard it is to get off them. Benzodiazepines are dangerous for older people, for instance, but they are also hard to quit because of withdrawal symptoms.

And the patient should get a voice, too. "I think our data should be taken into consideration in a shared decision-making process, rather than a 'You shall do this,' " Kutner says.

If her study had shown that a new drug improved quality of life without significant increases in mortality and with modest cost savings, it would be heralded as a breakthrough, she notes. "Most of the studies focus on when to start a medication; there's been very little focus on when do you stop it."

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Categories: NPR Blogs

Rethinking Alcohol: Can Heavy Drinkers Learn To Cut Back?

NPR Health Blog - Mon, 03/23/2015 - 3:33am
Rethinking Alcohol: Can Heavy Drinkers Learn To Cut Back? March 23, 2015 3:33 AM ET Listen to the Story 6 min 45 sec   Maria Fabrizio for NPR

The thinking about alcohol dependence used to be black and white. There was a belief that there were two kinds of drinkers: alcoholics and everyone else.

"But that dichotomy — yes or no, you have it or you don't — is inadequate," says Dr. John Mariani, who researches substance abuse at Columbia University. He says that the thinking has evolved, and that the field of psychiatry recognizes there's a spectrum.

Problems with alcohol run the gamut from mild to severe. And there are as many kinds of drinkers along the continuum as there are personality types.

People with severe problems, such as those who keep on drinking even after they lose jobs or get DUIs, need treatment to stop drinking completely.

But there are other drinkers, including some who are in the habit of drinking more than one or two drinks a day, who may be able to cut back or moderate their consumption and reduce their risk.

In fact, a recent study by the Centers for Disease Control and Prevention found that the majority of Americans who drink more than one or two drinks a day are not alcoholics. They don't report symptoms of dependence.

The Salt Moderate Drinker Or Alcoholic? Many Americans Fall In Between

So what would it take for them to cut back? Increasingly there are researchers and therapists evaluating this question. And they're finding a host of strategies that may be helpful.

Another CDC study found that alcohol screening and counseling in doctors' offices — for instance, your primary care doctor asking about drinking during an annual checkup — can reduce drinking by 25 percent per occasion in people who drink too much.

And the National Institute on Alcohol Abuse and Alcoholism has a whole list of tips aimed at cutting down — everything from drinking tracker cards that you can keep in your wallet to help you track your drinking when you go out, to strategies for handling urges.

"I had these good intentions, but then every time Friday rolled around, I'd lose my resolve."

For people concerned that their drinking may be moving towards dependence, a screening tool called the Drinker's Checkup can evaluate and give feedback.

There are also support groups such as Moderation Management, which aims to help drinkers who are trying to cut back.

Ten years ago, Donna Dierker, who lives in St. Louis, was concerned about her drinking. "When I did drink, I drank a lot," Dierker told us. She never drank during the workweek, but on weekends were different. "Fridays would be a six-pack," she says. And Saturdays meant more drinking. "On Sundays I'd feel awful."

Her blood pressure was going up; her weight was creeping up. And so she resolved to cut back.

"I had these good intentions, but then every time Friday rolled around, I'd lose my resolve," Dierker says.

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She checked out Alcoholics Anonymous because that was the only alcohol support group she'd ever heard of. But she says it didn't seem like the right fit.

Then she read about Moderation Management. "And I just decided to try it."

When she connected with leaders and other people on the MM listserv, they helped her work through her issues.

The first task was to identify her triggers. Why was she was drinking so much?

She realized that she used alcohol as a reward for a hard week's work. "Getting through a Friday evening without my reward, you know, that was the tough one," Dierker says.

But she also realized that her drinking was more of a habit than a compulsion. And the friends she drank with reinforced that habit. "That was the norm," she says.

So Dierker set out to change her weekend routine. Instead of drinking beer on a Friday night, "I'd drink seltzer water ... and dance in the playroom with my son," she says.

"I had to consciously slow down and learn to sip instead of gulp."

Slowly she developed a new relationship with alcohol. To pull this off, she learned tools and techniques to help her keep it in check. For instance, her old routine was to drink one drink after another, back to back — what's known as chain drinking.

"I had to consciously slow down and learn to sip instead of gulp," Dierker says.

And just as people learn to eat less by counting calories, she learned to count her drinks and set limits. "For me, that really helps."

Dierker says that for the most part it works for her. She has no problem just having a glass of wine with dinner or a couple of drinks with friends.

And every so often she takes a monthlong break from drinking so it doesn't start to creep up.

"I feel I'm in the driver's seat again," Dierker says. She no longer drinks out of habit. "I've gotten to the point where it's a treat again and I look forward to it."

Since Donna first tried moderation, the concept of helping people try to moderate their drinking has gained traction. The Substance Abuse and Mental Health Services Administration (SAMHSA) lists Moderation Management as an evidence-based program.

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And the National Institute on Alcohol Abuse and Alcoholism has reviewed one study that found that the moderation approach offered by Moderation Management and ModerateDrinking.com can help some heavy drinkers cut back.

But many experts would like to see more evidence of its effectiveness. "It's only one study," says NIAAA Director George Koob.

Moderation as an alternative to abstinence certainly doesn't work for everyone.

And the tricky part of the moderation path is that there's no way to know which heavy drinkers can learn to control their drinking rather than having to give it up completely.

"For everybody, it's really a process to figure out what's going to work and what's not."

There isn't enough data to know if a certain person with a certain profile is going to be successful, says Koob. "The science just hasn't been done."

And to some, the concept of moderation is controversial.

Some critics point to the story of the woman who founded Moderation Management. After leaving the organization, she struggled with drinking, caused a fatal drunk-driving crash and then committed suicide.

"For everybody, it's really a process to figure out what's going to work and what's not," says Sarah Vlnka. She's a social worker and therapist in Michigan who has struggled with alcohol.

In her case, after about a year and a half of experimenting with moderation she realized that she wanted to quit drinking entirely.

In part, she realized she was spending too much time thinking about managing the process.

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"I got tired of it," she says. "Anything that takes [so much] brain space doesn't feel worth it." So she stopped. In her case, moderation led her to abstinence.

Mariani says there are lots of heavy drinkers who are resistant to help or the idea of abstinence, but are open to the idea of cutting back.

"As a starting place," Mariani says, "moderation is often a goal that everyone can agree on."

And it also addresses what many experts see as a treatment gap. In the past, it was only the people with the most severe cases of alcohol dependence who got treatment or help.

With the moderation approach, "it's a way of reaching people earlier," says Dr. William Miller, professor emeritus of psychology and psychiatry at the University of New Mexico and author of Controlling Your Drinking. It's a way of meeting people where they are.

And if moderation doesn't work? It may be a step on the path to abstinence.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

Scientists Urge Temporary Moratorium On Human Genome Edits

NPR Health Blog - Fri, 03/20/2015 - 5:12pm
Scientists Urge Temporary Moratorium On Human Genome Edits March 20, 2015 5:12 PM ET Listen to the Story 3 min 40 sec  

A new technology called CRISPR could allow scientists to alter the human genetic code for generations. That's causing some leading biologists and bioethicists to sound an alarm. They're calling for a worldwide moratorium on any attempts to alter the code, at least until there's been time for far more research and discussion.

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It's not new that scientists can manipulate human DNA — genetic engineering, or gene editing, has been around for decades. But it's been hard, slow and very expensive. And only highly skilled geneticists could do it.

Recently that's changed. Scientists have developed new techniques that have sped up the process and, at the same time, made it a lot cheaper to make very precise changes in DNA.

There are a couple of different techniques, but the one most often talked about is CRISPR, which stands for clustered regularly interspaced short palindromic repeats. My colleague Joe Palca described the technique for Shots readers last June.

Why scientists are nervous

On the one hand, scientists are excited about these techniques because they may let them do good things, such as discovering important principles about biology. It might even lead to cures for diseases.

The big worry is that CRISPR and other techniques will be used to perform germline genetic modification.

Basically, that means making genetic changes in a human egg, sperm or embryo.

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Those kinds of changes would be passed down for generations. And that's something that's always been considered taboo in science.

One major reason that it's considered off limits, ethically, is that the technology is still so new that scientists really don't know how well it works.

The fear is that mistakes could be made, causing some new disease by accident. That disease could then be passed down for generations.

Another concern is that this could open the door to what people call designer babies.

If you let someone manipulate the genes in an egg or embryo to prevent a disease, where would you draw the line?

Microbiologist Jennifer Doudna at the University of California, Berkeley. She's co-inventor of the CRISPR-Cas9 technology — a tool that's recently made the snipping and splicing of genes much easier.

Cailey Cotner/UC Berkeley

People could use this, possibly, to make babies that are smarter, taller or better athletes. Hair and eye color could be manipulated. IQs could be boosted or lowered.

It raises all kind of Brave New World issues about genetically engineering the human race.

Moratorium gains momentum

In the last week or so, there's been a flurry of statements from several groups of scientists warning about all this. MIT's Technology Review had an in-depth report on the whole issue a couple of weeks back, if you want to learn more.

This week, groups that include the University of California's Jennifer Doudna, one of the researchers who developed CRISPR, essentially called for a moratorium on any attempt to do modification of the human germline using these techniques — at least until there's been more time for public discussion and more research to understand how well it works and how safe it is.

In interviews, several of the scientists and bioethicists issuing these statements said they are concerned things are moving too fast.

Last week, another group that includes some of the researchers who developed another gene editing technique, went even further and called for moratorium on doing any research in the laboratory that could lay the groundwork for attempting germline modification.

Not all scientists support this movement. Some say this powerful new technology is needed to advance science. It could produce important knowledge about stem cells, infertility — all sorts of things, they point out.

Still, there are concerns that rogue scientists could take information being published about such techniques and use the recipe in ways many people would find unethical — and dangerous.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

Wireless Sensors Help Scientists Map Staph Spread Inside Hospital

NPR Health Blog - Fri, 03/20/2015 - 2:53pm
Wireless Sensors Help Scientists Map Staph Spread Inside Hospital March 20, 2015 2:53 PM ET

Grey lines connecting health care workers (marked with "+") and patients represent contacts between them. The red figures are carriers of MRSA.

Obadia et al./PLOS Computational Biology

Whatever lands you in the hospital or nursing home also puts you at risk for acquiring an infection, possibly one that's resistant to antibiotic treatment.

Staph infections are common problems in health care facilities, and many Staphylcoccus aureus bacteria are now resistant to drug treatment.

Chances are you've heard of MRSA, which is the kind of staph that isn't susceptible to methicillin, the antibiotic that used to be a silver bullet.

Staph is happy to live on your skin or up your nose. A person can harbor the bacteria and wind up spreading them without showing any signs of infection. A third of people carry staph in their noses, according to studies cited by the Centers for Disease Control and Prevention. About 2 percent of people carry MRSA.

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Staph can spread through close contact with someone who's got a full-blown staph infection, such as an infected wound, or has been colonized by the bacteria.

Good hygiene, including diligent hand washing, and careful attention to disinfection, can help curb staph infections in health facilities.

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But wouldn't it be cool track in detail how staph moves from person to person in the real world?

Some French researchers tested a way to do it. They outfitted 261 health care workers and all 329 patients in a long-term care hospital with wireless sensors that recorded their interactions with one another every 30 seconds.

The researchers also took weekly bacterial samples from the people's noses and used genetic tests to fingerprint the staph. That way the scientists could trace the movement of bacteria from person to person.

The scheme worked.

Over four months of tracking and testing, the researchers mapped the hops that bacteria made from one person to another to another. They documented 173 transmissions of staph between people in the study. About a third of patients who had been free of staph when admitted were colonized within a month.

The findings were published Thursday by PLOS Computational Biology.

"Bottom line is, monitoring contact networks is easy," Thomas Obadia, lead author of the research paper, tells Shots in an email. "Recorded signals are indeed correlated with transmission, so such data should be used to design targeted control measures, in hospital or [a long-term care facility]. While this is more of a methodological paper, we're now trying to use the same data in a more applied way, but again this part is still a work in progress."

Obadia, a doctoral student at Université Pierre et Marie Curie in Paris, says, "the next step is to identify contact patterns that put individuals more at risk of getting colonized (and therefore at a higher risk of developing an infection later on)."

"The brilliant thing that they did was to bring together the power of digital epidemiology methods," says David Hartley, an infectious disease epidemiologist at Cincinnati Children's Hospital Medical Center.

The work by the French group confirms that when it comes to infection transmission of bacteria like staph, it really does matter who comes into contact with whom, he tells Shots. "Assumptions are sometimes wrong," he says. "We're surprised all the time when it comes to infectious disease."

And the findings suggest, he says, "that it's possible to prevent new [staph] infections by carefully managing close-proximity interactions between patients and health care workers."

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

Despite A Wave Of Data Breaches, Fed Says Patient Privacy Isn't Dead

NPR Health Blog - Fri, 03/20/2015 - 9:07am
Despite A Wave Of Data Breaches, Fed Says Patient Privacy Isn't Dead March 20, 2015 9:07 AM ET

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Charles Ornstein

It's hard to keep track of even the biggest health data breaches, given how frequently they seem to be happening.

Just Tuesday, health insurer Premera Blue Cross disclosed that hackers broke into its system and may have accessed the financial and medical records of some 11 million people. Premera's announcement comes weeks after another health insurer, Anthem Inc., announced that it too had been hacked—and that the records of nearly 80 million people were exposed.

The task of investigating medical data breaches falls to the Office for Civil Rights, a small agency within the Department of Health and Human Services.

Last month, ProPublica and NPR reported how, as the number of breaches has increased, the office infrequently uses its authority to fine organizations and health providers that fail to safeguard patient records.

The office's director, Jocelyn Samuels, spoke Monday to health privacy and security experts gathered in Washington, D.C., for the National HIPAA Summit, named for the Health Insurance Portability and Accountability Act.

After her talk, Samuels sat down with ProPublica to talk about the current state of health privacy. The conversation has been edited for length and clarity. Highlights are below; a fuller version is available on ProPublica's website.

To start off with, the Anthem breach is still at the top of mind for so many people. Does this change the landscape in terms of health data breaches?

We won't know until after we have investigated what the causes of the Anthem breach are or were, or whether there are concerns about HIPAA compliance. But I think that it illustrates both the increasing risks that exist in the cybersecurity space and the need for covered entities [health providers and others subject to HIPAA's requirements] to continue to update and evaluate their risk analyses to ensure that their risk management plans adequately anticipate all of the kinds of threats they may face.

Since HIPAA was passed in 1996, how would you say the state of play has changed with respect to patient privacy and the security of records?

The ability to access electronic health records is something that we obviously have clarified and expanded over time since HIPAA was enacted. And I anticipate that we will continue to evaluate the application of HIPAA standards to emerging issues, whether they are posed by new technology or new forms of risk that aren't being adequately addressed. From a macro perspective, we are seeing an explosion of new approaches to delivering health care, to treating patients, to sharing information. And that changes on an exceptionally rapid basis, and so ensuring that we are providing adequate guidance about how HIPAA applies and what the standards are in these new environments is something that's a high priority.

Some people have suggested that the notion of patient privacy is sort of outmoded and that you really don't have privacy anymore. Do you accept that?

No. I think that you are talking about some of the most intimate facts about any individual, whether it is their health condition or their diagnosis or their treatment choices, and that it is really critical to ensure that they feel confident that that information will be protected from public disclosure. That's the underlying premise of patient involvement in health care decision-making, that they can entrust their providers with this really intimate information knowing that it won't be misused or inappropriately disclosed. Although there are new threats and cybercriminals get smarter every day, we have to do our best to keep up and ensure that there are adequate protections in place so that we can gain the benefits that technology and delivery system reform are promising.

Your office has the ability to issue fines in ways that a lot of federal agencies can't and in denominations that a lot of federal agencies can't. You've noted that you used them about two dozen times. Is that enough?

You know, each case depends on its facts and I do think that we have been committed to using settlement agreements and monetary recoveries in situations where we think that the conduct has been egregious or where we want to create a deterrent or where we feel that the monetary settlement will help to reinforce the message that we're serious about HIPAA compliance. That said, we are very serious about HIPAA compliance even in situations where we don't seek monetary settlements or civil money penalties. And I think if you look at our corrective action plans [agreements in which providers promise to make changes following a complaint], you will see that those are uniformly robust efforts to ensure that covered entities and business associates undertake the infrastructure and structural reforms that are necessary to ensure compliance going forward.

ProPublica is a nonprofit investigative reporting newsroom based in New York. Has your privacy been violated? Please share your story to help inform our reporting.

Copyright 2015 ProPublica. To see more, visit http://www.propublica.org/.
Categories: NPR Blogs

'Looks Like Laury' Shines The Power Of Friendship On A Failing Mind

NPR Health Blog - Thu, 03/19/2015 - 3:29pm
'Looks Like Laury' Shines The Power Of Friendship On A Failing Mind March 19, 2015 3:29 PM ET

Laury Sacks and her husband, Eric. The actress and writer developed frontotemporal dementia in her late 40s and died in 2008 at age 52.

Courtesy of Eric Sacks

More than 5 million Americans have dementia, and that number is only climbing. Each case leaves some people wondering what's left in a friendship when the bond between confidants becomes literally unthinkable, when language and thinking fail. But a good friend can sometimes help in ways that a spouse, a child or a paid professional can't.

Looks Like Laury, Sounds Like Laury, a documentary now streaming on worldchannel.org through April 9, explores that terrain in the life of one woman with frontotemporal dementia, a progressive brain disease that tends to strike earlier than Alzheimer's and sometimes affects language skills first.

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The film, by Pamela Hogan and Connie Shulman, is at least as compelling for what it says about friendship's many faces and textures as for what it says about loss. It's worth watching closely — and taking notes.

We meet Laury Sacks, a charismatic New York actress, writer, wife and mother of two young children, when she is in her late 40s. She's already showing signs of what doctors initially diagnose as "expressive aphasia" — she can understand everything going on around her, it seems, but is having a hard time voicing her own ideas. Her friends are among the first to notice that Laury, usually quick-witted and chatty, suddenly isn't.

Initially, everyone assumes the situation is temporary. As her husband and kids grapple with the change, Sacks' large circle of best friends, including Hogan, a documentarian, and Shulman (an actress now well-known as "Yoga Jones" in Orange is the New Black), suggest the film to their pal as a way to help her express what she's going through.

Sacks jumps at the chance.

One of the first friends viewers meet is Nelsie Spencer, a fellow actress and novelist who co-wrote a play with Sacks some years earlier. Sacks' loss of language seems to especially stymie Spencer.

"It's like I'm a talk-show host, but my guest can't speak," Spencer tells the camera. "I talk and talk and talk, but I have no idea if she's interested in anything I'm saying, or if she's thinking ... 'When's she going to leave?' "

The usual chitchat among pals about family dissolves in a mystifying "Who's on First" loop. Laughter, hugs and shared walks, Spencer learns, seem to work better than 20 questions.

On Aging Camp For Alzheimer's Patients Isn't About Memories

Shulman is the problem-solving pal, a fixer of misunderstandings and hurt feelings. Some months into the filming, as daily tasks and errands become more confusing for Sacks, it's clear she needs more help during the day. Her husband, Eric, proposes hiring a health care aide to help Laury when he's at work. The helper could preserve his wife's independence, he hopes, while keeping her safe. Laury looks dubious and worried, but Shulman helps convince her.

Additional Information: So, Your Friend Has Dementia ...

There are as many ways to be a good friend to someone with moderate or advanced dementia as there are to be friends with anyone else, specialists say. Don't be afraid to visit or stay close to a pal with the illness. A few tips, adapted from a list by the Alzheimer's Society in the U.K.:

  • Use clear, simple and reassuring language as the illness progresses, but not baby talk. Nobody likes to be talked down to. Nonverbal communication can be just as meaningful — eye contact, gestures, a squeeze of the hand.
  • Never talk over your friend's head, as though she's not there, especially if you're talking about her. Include her in the conversation. Don't know where to start? Bring along photos, mention a favorite sports team or read a magazine together. Watch and listen. With time and support, she can make herself understood.
  • Look for the meaning behind your friend's words, even if they don't seem to make much sense. Whatever the details of the story, the person is usually trying to communicate how he feels. Avoid questions that require specific, factual answers and might make your friend feel pressured.
  • Help your friend stay active and involved in the outside world. Gardening, painting and other hobbies you've enjoyed together can help preserve your friend's self-esteem and dignity. A shared activity promotes a sense of belonging and helps bridge the gaps when words don't flow.
  • Enjoy music together. Musical memory is often retained when other memories flee.
  • Exercise helps everyone's mood. Take your friend for a walk in a pretty place.
  • Relax and keep your sense of humor. Funny things happen in life, even when dealing with a serious illness. Your friend is likely to appreciate a laugh, as long as she's included.

"I think, if anything," she tells Laury, "it would take the edge of the situation off. ... I don't know whether you get scared when you have to go on an errand, or something — that it's not going to go well, or that somebody won't understand you, or that you'll lose something." Having somebody close by, Shulman suggests to her friend, could "keep that fear from happening."

And the helper wouldn't be "a dud — some drag of a person," Shulman assures Laury. Rather, "somebody fun, like you!"

"Yes!" Laury finally says, and smiles. "Yes!"

That experiment doesn't work so well. A professional aide is an aide, after all, not a friend, and Sacks bristles under the constraints of a "minder" — even a well-meaning minder that she clearly needs. At this point, as Sacks' frustration spills into anger at her situation, it's another friend — actor, writer and director Nicole Quinn — who supplies what's needed at that moment. Sacks needs somebody who will let her shout and vent.

"Aaaaaahhhhh!" she screams, during a fast-paced walk through the park with Quinn. "What?" Quinn asks her quietly, matter-of-factly, adding, "That's right. You can yell. You can yell. You can scream. I don't care." Quinn matches Sacks' pace and stays calm. Gradually Sacks calms down, too. The two sit down near a pond and share a cigarette.

Pamela Hogan (left), director and producer of the documentary, with her friend Laury Sacks in 2000.

Courtesy of Jeffrey Kimball

"You can be angry about it," Quinn tells Sacks. "Just don't hold it in. ... I don't know that it's helpful to you." Gradually, Sacks' speech gets a little more fluid as she plays off what Quinn is saying, and the two are able to talk about Sacks' frustration. Soon both are relaxed and smiling. They laugh and share a few wry observations, like the longtime friends they are. It's clear Sacks feels seen, understood, less alone.

Her illness progressed quickly, and Laury Sacks died at age 52, in 2008. She left behind Eric, a son named William and a still-young daughter, Talley. As it turns out, Talley also had a best friend during that difficult time — Connie Shulman's sweetly wise and dimpled daughter, Gus Birney, an elementary school classmate of Talley's at the time of the filming.

"Talley — she's really my best friend, and she thinks I'm her best friend, too," Gus tells the camera early in the film, over scenes of the girls coloring together and walking arm-in-arm on the playground. "Sometimes we break up, but Talley always gets us back together."

Young Gus explains that Laury Sacks "is different than many other moms ... so Talley is different than many other friends because of that."

Even in elementary school, Gus recognizes the limits of friendship — and also its unique power.

"I can't ... give her something to make her feel better or to change her life," she says of Talley. "The only thing I can say is, 'I'll try to be really nice to you. I'll have lots of play dates with you. We'll even have sleepovers. We'll talk together and I'll help you through math and stuff ... and that's all I can do."

As Looks Like Laury, Sounds Like Laury shows so beautifully, friends aren't interchangeable; each one brings something special. And even though understanding and support can't solve all life's problems, sometimes it's enough.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

For A Good Snooze, Take One Melatonin, Add Eye Mask And Earplugs

NPR Health Blog - Thu, 03/19/2015 - 12:40pm
For A Good Snooze, Take One Melatonin, Add Eye Mask And Earplugs March 19, 201512:40 PM ET

It's hard to sleep when the light's on and the monitor's beeping.

Roderick Chen/Getty Images

Hospitals are one of the worst places to try to get a good night's sleep, just when you need it the most. And though many have tried to muffle the noise of beeping monitors and clattering carts, the noise remains a big problem for many patients.

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But what if we looked at a night in the hospital as a long overseas flight? As you settle in, they hand out eye masks and earplugs. And you cleverly brought along melatonin, the sleep-regulating hormone sold at drugstores everywhere.

Researchers in China tested just that, and found that eye masks, earplugs and melatonin all helped. But melatonin helped the most.

They tested them by creating a fake intensive care unit with noise and lights, and getting 40 healthy adults to sleep in it. With the noise and lights off, their melatonin levels rose sharply until about 4 am, which is typical of a normal sleep cycle. They snoozed happily.

But with the noise and lights on, melatonin levels tanked. The people said they slept poorly and were anxious.

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OK, on with the eye mask. The volunteers were given their choice of eye masks and earplugs and hit the hay. They fell asleep faster, were less likely to wake up, and arose saying they slept better and were less anxious.

Sounds like a win. But many people didn't like the earplugs, saying they were uncomfortable or claustrophobic. And the earplugs didn't do enough to muffle sounds.

Now for the melatonin. The volunteers took 1 mg at bedtime and said that did the best job of improving sleep quality and reducing anxiety. They also woke up less often during the night. And the melatonin level in their blood was much higher than while wearing eye masks or earplugs.

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The researchers also tested a placebo pill, but it improved sleep only slightly.

People in an intensive care unit are very ill, the researchers note, and eye masks and earplugs might not be enough to restore normal biological sleep patterns. The study was published Thursday in the journal Critical Care.

And melatonin isn't risk free. It isn't recommended for people with high blood pressure or depression. And it can increase immune function, which can be problematic for people with autoimmune diseases or transplants.

But it would be nice if hospitals handed out eye masks and earplugs along with those no-slip socks, wouldn't it?

Now all we need is for someone to invent cheap comfy earplugs that banish the commotion.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

Why Is Insulin So Expensive In The U.S.?

NPR Health Blog - Thu, 03/19/2015 - 3:06am
Why Is Insulin So Expensive In The U.S.? March 19, 2015 3:06 AM ET Listen to the Story 3 min 51 sec  

Dr. Jeremy Greene sees a lot of patients with diabetes that's out of control.

In fact, he says, sometimes their blood sugar is "so high that you can't even record the number on their glucometer."

Greene, a professor of medicine and history of medicine at Johns Hopkins University, started asking patients at his clinic in Baltimore why they had so much trouble keeping their blood sugar stable. He was shocked by their answer: the high cost of insulin.

Greene decided to call some local pharmacies, to ask about low-cost options. He was told no such options existed.

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"Only then did I realize there is no such thing as generic insulin in the United States in the year 2015," he says.

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Greene wondered why that was the case. Why was a medicine more than 90 years old so expensive? He started looking into the history of insulin, and has published a paper about his findings in this week's issue of the New England Journal of Medicine.

The story of insulin, it turns out, starts back in the late 1800s. That's when scientists discovered a link between diabetes and damaged cells in the pancreas — cells that produce insulin.

In the early 1920s, researchers in Toronto extracted insulin from cattle pancreases and gave it to people who had diabetes, as part of a clinical trial. The first patient was a 14-year-old boy, who made a dramatic recovery. Most others recovered as well. Soon, insulin from pigs and cattle was being produced and sold on a massive scale around the world.

Acids, alcohol and pancreatic tissue were separated, bathed and mixed in this laboratory of a 1946 insulin factory in Bielefeld, Germany.

Chris Ware/Getty Images

But for some, the early forms of the medicine weren't ideal. Many people required multiple injections every day, and some developed minor allergic reactions.

Over the next few decades, scientists figured out how to produce higher-quality insulin, Greene says. They made the drug purer, so recipients had fewer bad reactions. They also made the substance able to last longer in the bloodstream, which led to more stable blood sugar levels and less frequent injections.

"All of these innovations helped to make insulin a little bit safer, a little bit more effective," Greene says.

Then, in the 1970s, scientists developed a new technique they could use for insulin production, called recombinant DNA technology. It involves putting the human gene for insulin into bacteria, which then produce large quantities of the hormone.

Then, a funny thing happened, Greene says: "The older [animal] insulin, rather than remaining around on the market as a cheaper, older alternative, disappeared from the market."

Greene says there's no one reason that companies stopped producing the older animal versions, but they clearly felt it would not be profitable.

Dr. Kevin Riggs, a professor of medicine at Johns Hopkins and co-author of the new insulin study, says the newer, recombinant version of insulin may have had some advantages in terms of convenience and fewer side effects. But there was probably something else at work — doctors being influenced by marketing.

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"A lot of time we get caught up in some of the hype," Riggs says. "When a new medicine comes out and it has theoretical advantages, we buy into that and think newer is better."

The company that made the new form of insulin, called Humulin, launched a large marketing effort aimed at doctors and patients shortly after its release.

But newer drugs aren't always better, says Dr. Adriane Fugh-Berman, a professor of medicine and pharmacology at Georgetown University. That's partly because drug companies don't have to prove that a new drug is better than what is already on the market — they just have to prove that it's not worse.

"In government-funded studies that have compared older drugs to newer drugs, often older drugs come out looking better or equal to newer drugs," Fugh-Berman says.

For example, some patients have found that animal-derived forms of insulin work better for them, she says. They cause less variability in blood sugar, and fewer episodes of hypoglycemia.

And while those older kinds of insulin are not available in the U.S., they are available elsewhere.

"In Canada, there actually is still an animal-derived insulin on the market, and that was really due to the efforts of consumer advocates," Fugh-Berman says.

As the older versions have vanished in the U.S., newer versions have stayed expensive. The drug can cost up to $400 a month. Because of that high cost, many of the estimated 29 million people living with diabetes in the U.S. can't afford it.

Some industry analysts expect insulin costs to fall in the future. That's because the most recent insulin patents have expired, paving the way to more competition. The FDA has also decided to allow biosimilar versions of insulin onto the market. These are substances that act in a similar way to existing forms, but are not necessarily identical.

"But there's concern that the cost savings [with biosimilar insulin] will be nowhere near as robust as they have been with [other types of] generic drugs," Greene says.

"Rather than reducing costs by 80 percent, as many generics have done, they might reduce costs by 40 percent," Riggs says.

Greene says the point of their recent study about insulin costs isn't to simply blame the drug industry. "We do not believe that there is a conspiracy to keep insulin expensive," he says.

Rather, he says, incremental improvements in the drug — and the disappearance of older versions, which aren't as profitable — are more likely explanations.

Greene says innovations in insulin over the past 90 years have been significant. But, he says, it's important to ask this question: "Do these innovations merit the loss of affordable insulin?"

For patients at his clinic who can't afford insulin, Greene says, the answer is clear. A more affordable version is needed.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.
Categories: NPR Blogs

Blue Shield Of California Loses Exemption From State Taxes

NPR Health Blog - Wed, 03/18/2015 - 8:27pm
Blue Shield Of California Loses Exemption From State Taxes March 18, 2015 8:27 PM ET

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Jenny Gold Steve Rhodes/Flickr

California tax authorities have stripped Blue Shield of California, the state's third largest insurer, of its tax-exempt status in California and ordered the firm to file returns dating to 2013, potentially costing the company tens of millions of dollars.

At issue in the unusual case is whether the company is doing anything different from its for-profit competitors to warrant its tax break. As a nonprofit company, Blue Shield is expected to work for the public good in exchange for the exemption from state taxes.

"We're talking about a $10 billion public asset, and the only real return the public is getting is $35 million in charitable contributions each year? That's just a lousy deal. It's time to cash in that asset."

The California Franchise Tax Board actually revoked the exemption in August, but the move only became public when it was reported Tuesday, by the Los Angeles Times. The board said the rationale behind its decision was "not public information."

One likely explanation, however, is the $4.2 billion the company reports it is holding in financial reserves. That's four times larger than the national trade organization, Blue Cross and Blue Shield Association, requires members to hold in surplus to pay out member claims.

Over the past decade, the company has contributed a fraction of that amount — about $325 million — to its charitable foundation. (Kaiser Health News receives financial support from the Blue Shield of California Foundation.)

At the same time, Blue Shield's premium rates are similar to comparable for-profit competitors, and the company's former chief executive earned a hefty $4.6 million per year.

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Anthony Wright, who directs the consumer advocacy group California Health Access, said revoking the company's tax exemption will likely not increase premiums for consumers. But it could potentially add significant funds to the state's coffers, he said, which could be used to bolster the health care safety net and expand insurance options for Californians who remain uninsured.

The move by the state's tax board is "good for the state and it's good for taxpayers, " Wright said.

Blue Shield of California's former director of public policy, Michael Johnson, resigned from the post last week after raising concerns internally that the company was not doing enough for the public good. This week he went public with his concerns, faulting the insurer in particular for what he considers paltry annual contributions to its foundation.

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"We're talking about a $10 billion public asset, and the only real return the public is getting is $35 million in charitable contributions each year? That's just a lousy deal," he said. "It's time to cash in that asset."

"For over 70 years, Blue Shield has been a tax exempt entity, subsidized by taxpayers in order to provide benefits to the public," Johnson added. "But it's demonstrated that it's either unwilling or incapable of serving the public good."

He argued it is time for the company to be converted to a for-profit firm owned by private investors, with all proceeds from the sale transferred to the public.

There's a precedent for that — in the 1990s, Blue Cross of California, at the time a nonprofit insurer, converted to a for-profit company. Some of the assets held by the nonprofit were used to create large foundations in the state, including the California Endowment and the California HealthCare Foundation. But the difference in that case was that the conversion was the insurer's choice — it wanted to become a for-profit.

Blue Shield has challenged the Franchise Tax Board's decision, insisting that it does meet the requirements for exemption from California taxes.

"Blue Shield of California is a mission-driven not-for-profit health plan with a demonstrated commitment to the community," the company said in a written statement. "A longtime supporter of healthcare reform, we limit our net income to 2 percent of revenue and have devoted $325 million to our foundation's efforts to improve the health safety net and combat domestic violence."

Blue Shield is already paying federal taxes. Congress passed a tax reform law in 1986 that essentially stripped Blue Cross and Blue Shield of their federal tax-exempt status, after rival insurers complained. The two Blues unsuccessfully argued against the move, saying they deserved the tax-exempt status because of their efforts involving charitable, community-based health care.

Following the change in the federal law, "non-profit Blue plans have paid billions of dollars in federal income taxes," said Marie Cocco, a representative of the Blue Cross Blue Shield Association.

Gerald Kominski, a professor of health policy at the University of California Los Angeles, said that the decision to revoke Blue Shield's tax exemption "sends a very, very strong message to large nonprofits to be sure that you're functioning as a nonprofit, that you're not shielding assets or revenue from taxation and that you're generally serving the public good."

Julie Appleby of Kaiser Health News contributed reporting to this story.

Copyright 2015 Kaiser Health News. To see more, visit http://www.kaiserhealthnews.org/.
Categories: NPR Blogs

How Much Can Women Trust That Breast Cancer Biopsy?

NPR Health Blog - Wed, 03/18/2015 - 4:11pm
How Much Can Women Trust That Breast Cancer Biopsy? March 18, 2015 4:11 PM ET

Pathologists use slides like this one to look for signs of cancer in breast tissue.

Boilershot Photo/Science Source

When a woman is diagnosed with breast cancer, the person who does the diagnosing is a doctor she never sees — the pathologist.

But though pathologists do a great job of identifying invasive cancer, they aren't as good at spotting two less clear-cut diagnoses that bring women a lot of uncertainty and worry, a study finds.

The doctors correctly identified invasive breast cancer 96 percent of the time compared with an expert panel, according to a study published Tuesday in JAMA, the journal of the American Medical Association, and correctly identified normal tissue 87 percent of the time.

But they misdiagnosed ductal carcinoma in situ, or DCIS, 16 percent of the time, and atypia, or atypical hyperplasia, 52 percent of the time. That's troubling, because both conditions can go on to become invasive cancer.

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With atypia, 17 percent of the readings were false positives, meaning that a woman might undergo surgery and other treatment she doesn't need, and 32 percent were false negatives, meaning women wouldn't know they are at increased risk of cancer.

"The first thing for women to remember is that making a diagnosis from tissue is part science and part art," says Dr. Jean Simpson, president of Breast Pathology Consultants in Nashville, Tenn., who was not involved in the study.

The science involves putting thin slices of biopsy samples onto glass slides, so a pathologist can look at them under a microscope.

Invasive cancer is easy to spot, according to Dr. David Rimm, a pathology researcher at Yale School of Medicine. "Here are criteria I can write down: This cluster of cells has enlarged and irregularly shaped nuclei and architecturally irregularly shaped clusters and high nuclear to cytoplasmic ratio."

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But what if the sample has just some of those things? "And what if it has some suggestion of enlargement or some suggestion of arch irregularity?" Rimm asks. "Then we get into that gray area. That's what happens. That's the real world."

And as the JAMA study shows, it's not hard to fall into the gray area with DCIS, and especially atypia.

The study had three expert pathologists classify samples from 240 women, then gave them to 115 doctors to identify. It was a clever way to design a study, but it doesn't reflect how pathologists work, which includes reviewing the woman's medical record and often asking a colleague for advice on a confusing or complex slide. "Frequently it might be seen by more than one other person," Rimm says.

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Experience matters, too, Rimm says. "When you've looked at breast cancer for 20 or 30 years you develop an eye where you can see something that you can't really define."

And the doctors will confer and try to make their best interpretation. But we should be able to do better than that, says Rimm, who was coauthor of an editorial accompanying the study. "There's a need for more scientific approaches to these borderline cases. Unfortunately, there's relatively little focused research in this area."

But for women who are wondering what do to with a diagnosis of DCIS or atypia, it's important to know that the diagnosis isn't infallible, both Simpson and Rimm say.

"It's a question of uncertainty and how you want to deal with it," Rimm says. His own mother went through this with a breast biopsy, he says. "She had the ability to call her son and say, 'David, what should I do?' I said, 'Let's see what happens; let's watch it.' "

But of course he did also say, "Mom, how about we look at it here at Yale — send it to us." He agreed with the first diagnosis.

Those of us without a pathologist in the family are more than justified in getting a second opinion, Simpson says. "I will tell patients that a second opinion is a fairly inexpensive process," and insurance often pays for it. "And what value can you put on peace of mind?"

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