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Indiana's HIV Spike Prompts New Calls For Needle Exchanges Statewide

NPR Health Blog - Sat, 03/28/2015 - 7:38am
Indiana's HIV Spike Prompts New Calls For Needle Exchanges Statewide March 28, 2015 7:38 AM ET


Jake Harper Listen to the Story 3 min 22 sec  

Needle exchange programs, like this one in Portland, Maine, offer free, sterile syringes and needles to drug users. The programs save money and lives, health officials say, by curtailing the spread of bloodborne infections, such as hepatitis and HIV.

Robert F. Bukaty/AP

Shane Avery practices family medicine in Scott County, Ind. In December, a patient came to his office who was pregnant, and an injection drug user.

After running some routine tests, Avery found out that she was positive for HIV. She was the second case he had seen in just a few weeks.

Dr. Shane Avery (right) and Kevin Collins, Scott County's coroner, say the prescription opioid problem in their community has led to an HIV outbreak that's still expanding.

John Sommers II/Reuters/Landov

"Right then, I kind of realized, 'Wow, are we on the tip of something?' " Avery says. "But you just put it away. ... It's statistically an oddity when you're just one little doctor, you know?"

It wasn't just a blip. Health officials have identified dozens of new HIV cases in the area since December, and more are expected.

Scott County is one of the poorest and least healthy counties in Indiana. For years, it has struggled with injection drug abuse. Now the drug use in the area has spawned an epidemic of a different kind: HIV.

"I'm actually surprised there haven't been similar outbreaks in similar parts of the country that could be described in the same way as Scott County, Ind. It may be that this is the first of several."

More than 70 new infections with the AIDS virus have been confirmed in just the last few months, in a place that normally sees a handful of cases in a year. The crisis led Indiana's governor, Mike Pence, to declare a public health emergency Thursday.

It also reignited a debate in the state over the use of needle exchange programs to prevent HIV's spread among users of injected drugs. Such programs have been found to work elsewhere, but the strategy is illegal in Indiana — and in 22 other states.

Many of the outbreak's cases have been linked specifically to oxymorphone, a prescription painkiller commonly known by the brand name Opana. The opioid seems to have become a favorite among drug abusers, who grind up the pills to inject the medication. Sharing needles is common.

Health Needle Exchange Program Creates Black Market In Clean Syringes Shots - Health News Needle Exchanges Often Overlooked In AIDS Fight

"There is a social network that often goes along with this kind of drug use," says Dr. Andy Chambers, a psychiatrist and addiction specialist at the Indiana University School of Medicine. "So it's fairly usual for infectious diseases to spread through through the needles."

Chambers says the HIV outbreak calls attention to the national epidemic of opioid drug abuse.

"I'm actually ... surprised there haven't been other, similar outbreaks in other parts of the country that could be described in the same way as Scott County, Ind.," he says.

The fear of HIV spreading beyond Scott County has reignited debate about whether needle exchanges should be legalized throughout the state.

The strategy encourages drug users to trade their used needles and syringes for free clean ones in order to reduce the spread of infections that occur when the equipment is reused and shared.

Though still opposed to legalizing needle exchanges throughout the state, Indiana Gov. Mike Pence told reporters Thursday he will temporarily permit the strategy in Scott County.

Michael Conroy/AP

The Centers for Disease Control and Prevention convinced Gov. Mike Pence to allow a temporary needle exchange in Scott County as part of the emergency response. But Pence is still against legalizing such exchanges statewide.

"I don't believe that effective anti-drug policy involves handing out paraphernalia to drug users by government officials," he says. "I reject that."

Rep. Ed Clere, a Republican state legislator who represents a nearby county, says needle exchanges shouldn't just be used to manage a crisis — they should be put in place in time to prevent outbreaks from occurring.

"When we smell smoke, we shouldn't wait until the house is engulfed in flames to do something," Clere points out.

Clere has introduced a measure that would legalize needle exchanges across Indiana. When he introduced a similar measure last year, it failed.

"Many of the folks who have contracted HIV in Scott County are going to be receiving treatment at taxpayer expense," Clere says. "Even with the number of cases that have been confirmed so far ... we could be talking about tens of millions or hundreds of millions of dollars."

Lawmakers in neighboring Kentucky approved needle exchanges in that state this week. But Indiana's Pence is still threatening to veto a needle exchange bill if it reaches his desk.

Jake Harper reports from Indianapolis for WFYI and for a regional health journalism collaboration.

Copyright 2015 WFYI-FM. To see more, visit
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Medical Bills Linger, Long After Cancer Treatment Ends

NPR Health Blog - Fri, 03/27/2015 - 3:04pm
Medical Bills Linger, Long After Cancer Treatment Ends March 27, 2015 3:04 PM ET


Amanda Aronczyk Listen to the Story 8 min 16 sec  

Melinda Townsend-Breslin holds a photo showing her and her mother standing in the parking lot of a favorite thrift store in 2013.

William DeShazer for NPR

Melinda Townsend-Breslin keeps a photo of herself on her refrigerator standing with her mother, MaryLou Townsend, in the front of the Unique Thrift Store in Louisville, Ky. They're side by side in the parking lot, both wearing white shirts and sporting short, practical haircuts.

Mom is proudly showing her discount card. "For the thrift store!" said Townsend-Breslin, laughing. "The discount for the thrift store!"

For Townsend-Breslin, this photo captures her mother: a frugal woman with a cheeky sense of humor, not prone to indulgences. When she was diagnosed with metastatic pancreatic cancer at 58, she approached her grim prognosis with the same pragmatism. She wanted to pursue treatment, but only if it was working.

Shots - Health News How Much Does Cancer Cost Us?

The time between discovering a lesion on her pancreas and requiring surgery to remove it was just a few weeks, so when their family doctor recommended a noted surgeon, the family didn't hesitate to use his services. They knew he was out of their health plan's network of doctors, but at that stage, it was the least of their worries.

"Mom, don't worry about it," Townsend-Breslin recalled saying to her mother. "Worry about being sick, worry about the time that you that have left, don't worry about the darn bills."

Townsend had several complications after surgery and had to stay in the hospital for 30 days. Not long after, the family began receiving bills for that part of her care.

"There's not a lot of time to ask questions when they come and say we're going to do this surgery," Townsend-Breslin said. "We didn't have time to say, can you tell us how much the surgery is going to cost? How many surgeons are going to be involved? ... We had no clue of the bills that were on the other side."

According to the family, the bills ballooned to over $300,000 before their health insurance kicked in.

After MaryLou Townsend died, her husband, John, and their daughter were left with a large medical debt.

William DeShazer for NPR

Until then, Townsend and her husband, John, had always been healthy. They rarely used the health insurance coverage that they received through his work as an automotive technician at a local car dealership.

When the bills started coming in the mail, they weren't always sure what they were responsible for paying, and what would be covered. Townsend feared they would go bankrupt or lose the house.

"She knew she was dying," her husband said. "And she was worried about paying the bills — me paying the bills after she was gone, on top of that."

They soon realized that their insurance coverage was true to its policy. It covered many of the charges, but it didn't fully cover their out-of-network surgeon or the full cost of all of the procedures. The familiy owed over $100,000, even with insurance.

"I always say, yes, $100,000 in debt is horrible," said Maggie Woods, director of the health and life division of the Kentucky Department of Insurance. "But half a million is much worse."

John and MaryLou celebrating their 36th wedding anniversary in 2011, before she was diagnosed with cancer.

Courtesy of Melinda Townsend-Breslin

"Unfortunately," she said, "Everyone thinks if it's insurance it's going to make you 100 percent whole. It's not the case."

The family regretted not looking at the policy more carefully and takes responsibility for that mistake. The family faults the health insurance company for its refusal to pay for a blood thinner that Townsend required.

She was suffering from blood clots and didn't respond to the standard drugs. She was in pain and only a blood thinner called Lovenox seemed to help. The drug cost around $1,000 a month and had to be paid out of pocket. Almost every month, the Townsends would have the same argument with their insurance company: The doctor said Lovenox was medically necessary; the insurance company wouldn't pay.

The family doesn't believe it was told that under the Affordable Care Act every state is required to have a formal appeals process, where patients can ask an external arbitrator to review a denial of payment. It's possible the Townsends received written notification of this process, they concede, but they don't recall that happening.

"I kind of think that's part of the doctor's job," Woods of the Kentucky insurance department said to Townsend-Breslin. "If they're going to be writing a prescription that's $1,200 or something like that, they have a responsibility in my opinion to give you all of your options to help you finance this health care for your mother."

Townsend's oncologist, Shawn Glisson, said that he knew about the appeals process. He said several members of his team spend their days negotiating access to drugs with insurance companies. In this case, the insurance company repeatedly refused to pay for what he deemed a medically necessary treatment, he said.

But he also doesn't think it is a doctor's responsibility to be involved in all the financial issues that arise during treatment beyond helping patients gain access to drugs at a reasonable cost.

Melinda Townsend-Breslin lost her mother to pancreatic cancer in 2014. The family is still coping with the bills.

William DeShazer for NPR

"No one shares with me their 1040 and their economic balance sheet," he said, because his role as the oncologist is to treat cancer.

"People come see me because they want to live. And I don't have any control over the cost or what they signed up for or didn't sign up for or whether they have access to money or not."

Townsend-Breslin agreed. "No, that's not his job. His job was to treat Mom. His job was to focus on Mom and not focus on kind of the ancillary things that the family was focused on."

The prognosis for advanced pancreatic cancer is very poor, and Townsend's blood clotting persisted throughout treatment. When her initial response to chemotherapy showed limited improvement, she decided to stop treatment. She died on May 22, 2014.

Find other stories in the Living Cancer series at


Since then, Townsend-Breslin has made it her part-time job to resolve her father's lingering financial issues. She works in the same hospital where her mother was treated and received assistance from two foundations affiliated with the hospital. She also negotiated and disputed various bills as best she could.

By earlier this month, she had successfully managed to reduce her father's medical debt down from $100,000 to less than $10,000.

Now, she and her father are learning to live without their beloved mother and wife. It has been bittersweet. A few months after Townsend died, Townsend-Breslin gave birth to the family's first grandchild, a healthy baby boy.

"I think MaryLou would've been really smitten with him," said her widower, as he smiled at his new 4-month-old grandson. "I think she would've had you spoiled, boy."

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
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New York City To Teens: TXT ME With Mental Health Worries

NPR Health Blog - Fri, 03/27/2015 - 12:42pm
New York City To Teens: TXT ME With Mental Health Worries March 27, 201512:42 PM ET

Most teenagers with mental health problems don't get any help.


The majority of teenagers with mental health issues don't get help. But maybe if help were just a text message away — they wouldn't be so hesitant to reach out.

That's the thinking behind NYC Teen Text, a pilot program at 10 New York public high schools that allows teens to get help with mental health issues by text.

Chiara de Blasio, the 20-year-old daughter of Mayor Bill de Blasio who has been vocal about her own struggles with depression and substance abuse, helped launched the program. "I know from personal experience that reaching out when you're in pain can be the turning point – the first step on the road to recovery," she said at a press conference on Tuesday.

The initiative is managed by the city's health department in collaboration with the Mental Health Association of New York City, which already runs a citywide crisis phone service.

"I know from personal experience that reaching out when you're in pain can be the turning point – the first step on the road to recovery."

"Teens can be more candid on text than even in a phone conversation or in person," says John Draper, director of the National Suicide Prevention Lifeline, which helped design the Teen Text program. "This generation of teens make and break up relationships by text. So you can get pretty strong levels of intimate conversation with text."

The program is inspired by similar initiatives, including the Teen Line service in Los Angeles and the Crisis Text Line — which is available 24/7 for teens all over the country.

The advantage of having a local service is that counselors can look up and recommend local counselors to teens who need extra help. "We have more than 2,000 providers in our databases," Draper says.

And when teens who text the helpline appear to be in imminent danger of harming themselves or others, counselors can work with the local police department to track them down make sure they're safe.

But the text-based approach poses a few challenges, as well, Draper says. "One of the tricky things is making sure we're communicating our empathy. You can't hear someone say 'Mhm, mhm' over text."

Counselors who operate the text line receive extra training, Draper says. "Over text, counselors go out of their way to make it clear that they're actively listening. We may say something like 'It sounds like this loss has been terribly devastating for you, I'm so sorry to hear that.' "

New York City Department of Health

And teens who reach out to such services may need extra validation, Draper says. "The whole world could be black today and it may feel like that's the way it will be forever. They don't have life experience telling them that this is going to end and get better," he says. "The counselor's job is to really be there in the moment so they learn that they can get through this."

Privacy is another concern. "We use encrypted messages and store all the information in secure databases," Draper says. "Still, on their end, we have no control over what they do with their information. The advantage of keeping the texts on their phone is that they can read and reread these messages that were useful or important to them. But we do warn them — if they're concerned about someone seeing, they should forward their texts to a more secure setting."

"I was very excited about this program," says Nadine Kaslow, the president of the American Psychological Association and vice-chair of Emory University's psychiatry department. "I think it has a great deal of potential."

In-person counseling is the best, most effective way to help teens with mental health trouble, says Kaslow, who isn't involved with the Teen Text program. "But there will be some subgroup of teens where this text service is the only way to connect with them."

There is a lack of research on the long-term efficacy of text and mobile app based services, she notes. "The issue is that everything is anonymous and there's no way to follow-up with them to see if they ended up seeing a counselor later, or if they're doing better."

The NYC Department of Health and Mental Hygiene will be tracking the number of students who use the new service, and they're planning on gathering feedback from students at the 10 pilot high schools, according to Gary Belkin, the executive deputy commissioner for mental hygiene.

If the program is successful, the health department hopes to expand it and promote it in high schools citywide.

Copyright 2015 NPR. To see more, visit
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How Much Does Cancer Cost Us?

NPR Health Blog - Thu, 03/26/2015 - 5:00pm
How Much Does Cancer Cost Us? March 26, 2015 5:00 PM ET


Kathryn Tam

Before we started our Living Cancer series, we went on NPR's Facebook page to ask people about their experiences in paying for cancer treatment. Over a hundred people from across the country responded.

We talked with some people by phone to learn about their stories.

Maureen Carrigg, who lives in Wayne, Neb., was diagnosed with multiple myeloma six years ago. Even though she says she was meticulous about staying within her insurer's network for care, she still ended up owing $80,000 in out-of-pocket costs.

Shots - Health News Medical Bills Linger, Long After Cancer Treatment Ends

"When you're in the hospital, you can't just put a notebook by your bed and write everything down," she said.

"I went into the cancer center's office with these bills and just started bawling because I couldn't figure out how I was going to pay it all back," she said. In then end, she had to tap her son's college savings account.

Tough financial decisions were common among those who shared their stories with us. For many, the threat of personal bankruptcy loomed large. Ginger Roethemeyer, a retired oncology nurse from Omaha, Neb., says she cashed out her 401(k) to pay off her medical bills quickly.

Find other stories in the Living Cancer series at


She was diagnosed with lymphoma in 2010. Chemotherapy drugs were the most expensive part of her care. As a nurse, and eventually a patient, Roethemeyer saw both sides of cancer treatment. Looking back, she said, "I think I could deal with the actual cancer far better than having to deal with the medical system and the cost of treatment."

Many people told us the financial cost of cancer treatment was something they preferred not to think about — at first. But paying for cancer care shaped the way they make daily decisions, and it also took an emotional toll.

Cindy Alsobrook, 42, was diagnosed with cervical cancer in 2013. During her second round of chemotherapy, she developed severe lymphedema, a painful swelling, and had to quit her job at a local shoe store. Her husband supports them by working three days a week as a shipping and receiving clerk.

"So now all the weight is on him to keep us afloat," Alsobrook said over the phone from her home in Seattle. "I think it's obvious that the financial hardship creates an emotional hardship, but it has a lot of layers."

Alsobrook would like to get back to work, to help with bills and for the emotional fulfillment. "It's easy to feel like you don't count," she says. "I know that I have a lot to offer the world, but I feel like I've been shelved because I've been sick."

How much do you know about what cancer costs our country and the people who are affected by the disease? Take our quiz and put your knowledge to the test.

var pymParent = new pym.Parent('pym-cancer-costs-quiz', '', { });

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
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Critic Faults Alcoholics Anonymous For Lack Of Evidence

NPR Health Blog - Thu, 03/26/2015 - 3:38pm
Critic Faults Alcoholics Anonymous For Lack Of Evidence March 26, 2015 3:38 PM ET NPR Staff Listen to the Story 5 min 40 sec  

Founded by two men in Akron, Ohio, in 1935, Alcoholics Anonymous has since spread around the world as a leading community-based method of overcoming alcohol dependence and abuse. Many people swear by the 12-step method, which has become the basis of programs to treat the abuse of drugs, gambling, eating disorders and other compulsive behaviors.

But not everyone's a fan. In a recent critique of AA, author Gabrielle Glaser writes in the April issue of The Atlantic that, "Nowhere in the field of medicine is treatment less grounded in modern science."

The Salt Moderate Drinker Or Alcoholic? Many Americans Fall In Between Shots - Health News Meds Can Help Problem Drinkers, But Many Doctors Don't Know That

Glaser, whose 2013 book, Her Best-Kept Secret, explores what she calls "the epidemic of female drinking" in the U.S., says recent research on the brain suggests that the abstinence advocated by AA isn't the only solution — or even the best for many people. Cognitive therapy combined with the medication naltrexone, Glaser says, can help ease cravings and has been shown in some studies to help some problem drinkers learn to drink moderately without quitting.

Glaser's magazine story has drawn fire from defenders of AA, including Huffington Post writer Tommy Rosen, who calls himself "a person in long-term recovery (23 years) who overcame severe drug addiction and alcoholism in great part due to the 12 Steps." Glaser's article, Rosen writes, is "painfully one-sided." Therapist and psychology reporter Robi Ludwig told Glaser and the host of MSNBC's program All in With Chris Hayes last week that she thinks it's "very dangerous to put out the idea that AA doesn't work. Does it work for everybody? No. There's not going to be one form of treatment that works for everybody."

In an interview with NPR's Audie Cornish for All Things Considered, Glaser discusses her story, the heat she's getting and why she believes people with a drinking problem should consider options beyond AA. NPR contacted Alcoholics Anonymous for comment, but the organization declined.

Interview Highlights

On why Glaser thinks Alcoholics Anonymous should be challenged and updated

We did a lot of things in 1935 that we don't do anymore. You know, when babies were delivered, we spanked them on the bottom and held them upside down and that's something that didn't necessarily hurt babies, but we don't do that anymore.

I'm not saying AA shouldn't exist. But what I am saying is that we can't prove its efficacy. And some of the studies that have been done just don't justify our immense reliance on a system that hasn't been found to be effective.

[In] the modern history of disease, from AIDS to breast cancer, patients have demanded better treatment. They've demanded better drugs; they've demanded less disfiguring surgeries. But because of our country's ambivalent history with alcohol and problem drinkers, our answer has been: "Stick with the 12 steps. It works if you work it." And what I'm saying is, it works for some people but not for everybody. And we should be demanding more options.

On the dominance of AA and the 12-step approach in the treatment of substance abuse in the United States

There was a book that came out in 2013 called Inside Rehab by Anne Fletcher, and that book found that up to 80 percent of all rehabs rely on AA and 12-step treatments as the foundation for their centers. It really has crowded out other voices.

On the idea that some key aspects of AA — peer support, spirituality, personal transformation — don't lend themselves to scientific metrics

Right. ... That's a benefit that people do get from being in a group such as AA, but there are also many other [programs] that are free and peer-led and they happen to be rooted in evidence-based treatment. Many of them use cognitive behavioral therapy as their backbone. One is Smart Recovery. Moderation Management is another one. Women for Sobriety is a third.

On the criticism she's received that questioning AA is irresponsible, when so many people say 12-step programs are the only thing that enabled them to quit drinking

I get those messages all the time. My response to that is that this treatment actually can be just as damaging and dangerous for the people for whom it's failing. AA doesn't refer anybody out. It doesn't tell anybody that AA is not for them. It's very unlike professional organizations, which refer people to second opinions. AA tells people that if they don't benefit, it's basically their fault. This has produced, really, a lot of tragedies. I hear about them weekly. Someone sent me an email this morning about a younger brother who committed suicide last night with the [AA] Big Book and a glass of scotch next to his bed.

On the risks of AA to some people

It causes people to blame themselves for failing and, consequently, spending more time in the program feeling worse about themselves. Families also blame their loved ones if they don't do well or if they drop out rather than realizing that AA might not be the best approach.

On naltrexone, and whether there's danger in using a drug to treat someone with a serious drinking problem

That is an idea that's kind of rooted in history. When doctors were trying to get people away from their alcohol addiction in the 1950s and '60s, they were also prescribing Valium. So many people would become addicted to both Valium and alcohol. This is a completely different drug. Naltrexone is an opioid antagonist. It's nonaddicting. It's been shown in dozens and dozens of studies to be very safe. And in Finland, it's been used [to help] drinkers ... learn to moderate. The drug is legal. It was approved by the FDA in 1994, and it's used here in only about 1 percent of cases.

So there's a whole kit of tools out there that have been ignored. And this is really the moment to have this conversation. ... The Affordable Care Act now covers treatment for people with alcohol use disorder. The question arises: What treatments are we going to cover? What are we going to invest in as we move forward?

Copyright 2015 NPR. To see more, visit
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A Single Gene May Determine Why Some People Get So Sick With The Flu

NPR Health Blog - Thu, 03/26/2015 - 2:06pm
A Single Gene May Determine Why Some People Get So Sick With The Flu March 26, 2015 2:06 PM ET Poncie Rutsch

The H1N1 swine flu virus kills some people, while others don't get very sick at all. A genetic variation offers one clue.

Centre For Infections/Health Pro/Science Photo Library/Getty Images

It's hard to predict who will get the flu in any given year. While some people may simply spend a few days in bed with aches and a stuffy nose, others may become so ill that they end up in the hospital.

Until now, researchers could only point generally at differences between flu patients' immune responses. Jean-Laurent Casanova, a professor at Rockefeller University and investigator at Howard Hughes Medical Institute, has been sifting through cases of children with severe flu. He and his colleagues have pinpointed one gene that keeps the immune system from fighting off the flu, and their results were published today in Science.

For this study, Casanova focused on one girl, who was two and a half years old when she was infected with H1N1, more commonly known as swine flu. The girl, whom the researchers call P, was admitted to a pediatric intensive care unit where she was intubated and kept on a ventilator while she was treated.

Shots - Health News Scientists Implicate More Than 100 Genes In Causing Autism

The girl had no risk factors that might predispose her to severe influenza. "The child did not have pulmonary disease or any congenital problems," Casanova tells Shots. Nor did she have a family history of lung problems or anything that would suggest she could not stage a full-throttle immune response. "It's just life-threatening influenza coming out of the blue," he explains.

So Casanova and his collaborators sequenced the girl's genome, and searched for genes that might keep P from building a strong immune response to fight off the flu. They pinpointed one gene that prevents P from making interferons, proteins that help stop an invading virus from replicating and further spreading through the body.

Interferons are an important part of the immune response because they're an early defense that the body employs to fight disease. "They're made by all cells in the body," says Casanova. "Some cells have weak interferons, and in that case even a seasonal flu virus can be dangerous."

Shots - Health News Is Your State Ready For The Next Infectious Outbreak? Probably Not

In addition to pinpointing the gene, Casanova and his colleagues used stems cells to grow P's pulmonary cells in vitro. Sure enough, her cells could not produce interferons.

The study helps explain genetic variation changes the way that people fight off viruses. "The response to influenza is genetically impaired," says Casanova. He's hoping that the study will catch the interest of other pediatricians and lead to more patients offering their genomes for further research.

Casanova is also intrigued by interferon therapy, which is sometimes used to help fight multiple sclerosis, hepatitis C and some forms of cancer. "It's a little like insulin to the diabetic; you give a person with diabetes insulin and they're good," he explains. Patients might be able to receive interferon injections to mount a faster immune response, he speculates, instead of waiting for later attacks from B and T cells.

Shots - Health News Debunking Vaccine Myths Can Have An Unintended Effect

As for P, she made a full recovery from H1N1. Four years later, she gets the flu vaccine each year and has remained healthy. "If she is exposed to influenza after vaccination she can respond to the virus," says Casanova. This is because other parts of P's immune system still effectively defend her body from infection. The flu vaccine, for example, uses an inactive form of influenza to build a response in the body's T cells and B cells.

"She makes T cells and B cells against the virus, so when the virus comes it is immediately killed by those cells even though the interferons aren't working," Casanova explains.

So while it doesn't make sense to sequence children's genomes looking for variants that affect the immune system, Casanova strongly advises that every child receive the flu vaccine. "If this patient had been vaccinated prior to her first infection she would probably have always remained healthy," he says.

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High-Deductible Health Plans Cut Costs, At Least For Now

NPR Health Blog - Thu, 03/26/2015 - 10:31am
High-Deductible Health Plans Cut Costs, At Least For Now March 26, 201510:31 AM ET

Partner content from

Jay Hancock

Got a high-deductible health plan? The kind that doesn't pay most medical bills until they exceed several thousand dollars? You're a foot soldier who's been drafted in the war against high health costs.

Companies that switch workers into high-deductible plans can reap enormous savings, consultants will tell you — and not just by making employees pay more. Total costs paid by everybody — employer, employee and insurance company — tend to fall in the first year or rise more slowly when consumers have more at stake at the health-care checkout counter whether or not they're making medically wise choices.

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Consumers with high deductibles sometimes skip procedures, think harder about getting treatment and shop for lower prices when they do seek care.

What nobody knows is whether such plans, also sold to individuals and families through the health law's online exchanges, will backfire. If people choose not to have important preventive care and end up needing an expensive hospital stay years later as a result, everybody is worse off.

A new study delivers cautiously optimistic results for employers and policymakers, if not for consumers paying a higher share of their own health care costs.

More U.S. Companies Switch To High Deductible Health Plans

Researchers led by Amelia Haviland at Carnegie Mellon University found that overall savings at companies introducing high-deductible plans lasted for up to three years afterwards. If there were any cost-related time bombs caused by forgone care, at least they didn't blow up by then.

"Three years out there consistently seems to be a reduction in total health care spending" at employers offering high-deductible plans, Haviland said in an interview. Although the study says nothing about what might happen after that, "this was interesting to us that it persists for this amount of time."

The savings were substantial: 5 percent on average for employers offering high-deductible plans compared with results at companies that didn't offer them. And that was for the whole company, whether or not all workers took the high-deductible option.

Shots - Health News As Big Employers Pinch Pennies, Health Savings Accounts Take Off

The size of the study was impressive; it covered 13 million employees and dependents at 54 big companies. All savings were from reduced spending on pharmaceuticals and doctor visits and other outpatient care. There was no sign of what often happens when high-risk patients miss preventive care: spikes in emergency-room visits and hospital admissions.

The suits in human resources call this kind of coverage a "consumer-directed" health plan. It sounds less scary than the old name for coverage with huge deductibles: catastrophic health insurance.

But having consumers direct their own care also requires making sure they know enough to make smart choices. That means getting vaccines and skipping dubious procedures like an expensive MRI scan at the first sign of back pain.

"What happens five years or 10 years down the line when people develop more consequences of reducing high-value, necessary care?"

Not all employers are doing a terrific job. Most high-deductible plan members surveyed in a recent California study had no idea that preventive screenings, office visits and other important care required little or no out-of-pocket payment. One in five said they had avoided preventive care because of the cost.

"This evidence of persistent reductions in spending places even greater importance on developing evidence on how they are achieved," Kate Bundorf, a Stanford health economist not involved in the study, said of consumer-directed plans.

"Are consumers foregoing preventive care?" Bundorf asks. "Are they less adherent to [effective] medicine? Or are they reducing their use of low-value office visits and corresponding drugs or substituting to cheaper yet similarly effective prescribed drugs?"

Employers and consultants are trying to educate people about avoiding needless procedures and finding quality caregivers at better prices.

That might explain why the companies offering high-deductible plans saw such significant savings even though not all workers signed up, Haviland said. Even employees with traditional, lower-deductible plans may be using the shopping tools.

The study doesn't close the book on consumer-directed plans.

"What happens five years or 10 years down the line when people develop more consequences of reducing high-value, necessary care?" Haviland asked. Nobody knows.

And the study doesn't address a side effect of high-deductibles that doctors can't treat: pocketbook trauma. Consumer-directed plans, often paired with tax-favored health savings accounts, can require families to pay $5,000 or more per year in out-of-pocket costs.

Three people out of 5 with low incomes and half of those with moderate incomes told the Commonwealth Fund last year their deductibles are hard to afford.

As in all battles, the front-line infantry often makes the biggest sacrifice.

Copyright 2015 Kaiser Health News. To see more, visit
Categories: NPR Blogs

Why Doctors Are Trying A Skin Cancer Drug To Treat A Brain Tumor

NPR Health Blog - Thu, 03/26/2015 - 3:52am
Why Doctors Are Trying A Skin Cancer Drug To Treat A Brain Tumor March 26, 2015 3:52 AM ET


Amanda Aronczyk Paige Cowett Listen to the Story 7 min 15 sec  

MaryAnn Anselmo has started to sing again after recovering from brain surgery and having successful treatment with a drug that targeted a mutation in her tumor cells.

Dave Gershgorn/WNYC

MaryAnn Anselmo feared for the worst when she was diagnosed with a brain tumor called a glioblastoma in late 2013.

"You start doing research on that type of tumor, and you're saying, 'Oh my God, you're history.' It's like a death sentence," says, Anselmo, now 59.

Only for her it wasn't.

Anselmo's successful treatment shows how precision medicine — tailoring therapy to each patient's genetic needs — is beginning to transform cancer care.

At first, the outlook seemed grim. Although Anselmo's surgeon was able to surgically remove most of her tumor, she couldn't tolerate traditional chemotherapy that was the planned second step, and had to discontinue it.

Find other stories in the Living Cancer series at


The chemo failure was the latest in a string of personal setbacks.

The year before she was diagnosed with brain cancer, she'd lost her son to suicide. Weeks after that she was almost killed in a car crash outside a local mall. Her cancer was discovered after she had a dizzy spell, and her husband, Joseph, insisted she return to the hospital to have it checked out.

After all that, Anselmo and her husband weren't ready to give up on her cancer fight. He'd read about advances in targeted therapies — drugs that go after cancer cells at the molecular level.

The family sent samples of her tumor samples for genetic testing to several leading cancer hospitals. Memorial Sloan Kettering Cancer Center, where she was being treated, also did its own sequencing. They all found the same thing. Anselmo's tumor had a BRAF mutation common in skin cancer, but very unusual for a brain tumor.

Her oncologist, David Hyman at Memorial Sloan Kettering, enrolled Anselmo into a new kind of drug trial. Called a basket trial, the study is designed to include people whose tumors have the same kind of genetic fingerprint regardless of where in the body the tumors are found.

Knowing more about the genetic mutations of a tumor enables doctors to find a potentially effective drug much more quickly and accurately. "It's like you're in a parking lot," Hyman says. "And you have a key to one of the cars in the parking lot. And so one option is just to go to each car and try to open the lock. The other is to know that it's the third car on the right. What we're doing now is we're saying, OK, this key fits that lock. And we're only going straight to that car."

When MaryAnn Anselmo sings jazz, her stage name is Mariel Larsen.

Courtesy of Kendell Mesick

Today, Anselmo is doing well. She's been in the clinical trial for a year now, and continues to take Zelboraf (or vemurafenib generically) daily. The pills have kept her cancer from growing.

There are side effects, of course. She's lost some peripheral vision, though she's been able to compensate. And Zelboraf is expensive, though it's free to Anselmo because she's taking it as part of a study.

Now she can focus again on the things she loves, like singing. Anselmo, a jazz singer who performed under the stage name Mariel Larsen before her illness, is planning a comeback. She's back in training with her longtime vocal coach.

As this kind of genetic sequencing of tumors has become faster and cheaper, more patients have access to this technology. More doctors are taking advantage of the information to treat patients with a targeted approach.

"We took a disease where nothing really works for any length of time and we've given her a year of life, and hopefully much more, where she's been much better," Hyman, her oncologist, says.

Still, he cautions that the targeted treatments can't be considered cures. At some point the drug that is keeping Anselmo's cancer at bay could stop working. "Every patient is different in how long it works," he says. "We all have patients that have been on these drugs for years. But I don't know, I mean, I think if I was being honest eventually our expectation would be that it would stop working."

There's no way to predict when. But in the meantime, patients like Anselmo are grateful to have time they wouldn't have had otherwise.

After all the misfortunes she's been through, it would be easy to think Anselmo has been incredibly unlucky. But she doesn't see it that way. No, she says after rehearsing for her comeback show, "I'm the luckiest."

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
Categories: NPR Blogs

University And Biotech Firm Team Up On Colorblindness Therapy

NPR Health Blog - Wed, 03/25/2015 - 4:14pm
University And Biotech Firm Team Up On Colorblindness Therapy March 25, 2015 4:14 PM ET Listen to the Story 3 min 55 sec  

A simulation from the Neitz lab of what colorblindness looks like, with normal color vision on the left and red-green colorblindness on the right.

Courtesy of Neitz Laboratory

More than 10 million Americans have trouble distinguishing red from green or blue from yellow, and there's no treatment for colorblindness.

A biotech company and two scientists hope to change that.

On Wednesday, Avalanche Biotechnologies in Menlo Park and the University of Washington in Seattle announced a licensing agreement to develop the first treatment for colorblindness. The deal brings together a gene therapy technique developed by Avalanche with the expertise of vision researchers at the University of Washington.

"Our goal is to be treating colorblindness in clinical trials in patients in the next one to two years," says Thomas Chalberg, the founder and CEO of Avalanche.

Dalton the squirrel monkey during the color vision test.

Courtesy of Neitz Laboratory

The agreement has its roots in a scientific breakthrough that occurred six years ago. That's when two vision researchers at the University of Washington used gene therapy to cure a common form of colorblindness in squirrel monkeys.

"This opened the possibility of ultimately getting this to cure colorblindness in humans," says Jay Neitz, who runs the Color Vision Lab at UW along with his wife, Maureen Neitz.

The couple knew that transferring their success from monkey to man would be a challenge. But they were determined, says Maureen Neitz. "We've spent our entire careers writing NIH grants where we say our goal is to improve human health."

Colorblindness is usually a genetic disorder. About 8 percent of men inherit a mutation on the X chromosome that makes it hard for them to distinguish between red and green. The condition affects only about 0.5 percent of women, who have two X chromosomes.

And color vision problems can be disabling. Emails arrive every day at Neitz lab with subject lines saying things like "colorblindness ruined my life," says Jay Neitz.

Science Thanks To Gene Therapy, Monkeys See In Full Color

The stories often come from people who say they are unable to pursue careers as pilots or fire fighters or even electricians, whose work involves a lot of color-coded wires.

Colorblindness can also make it hard to do things like drive after dark, says Maureen Neitz. That became a big problem for her brother, who is colorblind, after his community switched from mercury street lamps, which give off bluish light, to sodium street lamps, which produce orange light.

"He came home and he was shaking," Maureen Neitz says. "He said everything was just a sea of lights, it was all the same colors. (He) could not tell the street lights from the brake lights from the stoplights."

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Curing colorblindness involves delivering new genes to cells in the retina that respond to color. That's how Jay and Maureen Neitz cured the squirrel monkeys six years ago. But the technique they used required surgery on the retina, which is risky.

For people they needed a nonsurgical approach, something that had eluded researchers for years. Then a team at the University of California, Berkeley found a way to deliver genes using a simple injection into the vitreous, the clear gel that fills most of the eyeball.

Avalanche Biotechnologies has been working to improve and commercialize the Berkeley technique, says Chalberg. When he met Jay and Maureen Neitz at a scientific conference in 2012, he says, it was clear they could work together.

It should be possible to begin experimentally treating patients within a couple of years, Chalberg says, because the human eye has proved to be a safe and relatively easy place to use gene therapy. "We like to say what happens in the eye stays in the eye, because it's kind of this small enclosed space."

And a cure for colorblindness has the potential to help millions of people, Chalberg says. "People with this vision disorder have a very limited sensation," he says. "They can only see about 1 percent of the colors of a normal person. And so in some ways it's actually closer to being blind than it is to being sighted."

Copyright 2015 NPR. To see more, visit
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A Woman's Journey From Cancer Diagnosis To 'Professional Patient'

NPR Health Blog - Wed, 03/25/2015 - 2:56pm
A Woman's Journey From Cancer Diagnosis To 'Professional Patient' March 25, 2015 2:56 PM ET


Paige Cowett Listen to the Story 8 min 15 sec  

The Josephson family in 2001, after Dixie (third from left) was told she had cancer.

Courtesy of the Josephsons

Dixie Josephson was 56 when she was diagnosed with metastatic ovarian cancer. She's 71 now, but the cancer is still with her.

Josephson's story is one shared by other fortunate cancer patients. Advances in treatment mean that more people like Josephson can live longer with their disease. Still, the five-year survival rate for metastatic ovarian cancer is 27 percent, putting Josephson in the minority.

And the treatments that have extended her life have also taken a toll on her and her family.

"OK, ready," she says during a visit to Women and Infants Hospital in Providence, R.I. "I'm here for an appointment. and I don't ever feel good when I come in for that. It's scary and depressing."

Find other stories in the Living Cancer series at


Her oncologist, Skip Granai, says of Josephson's treatment, "We're into uncharted waters now." He has overseen her care for the past 15 years.

Over that time, Josephson has had to make a lot of choices about how aggressively to treat her cancer. She's had surgery to remove her reproductive organs, endured 14 chemotherapy regimens and undergone two rounds of radiation.

The chemotherapy led to chronic fatigue and severe nerve pain. She lost her teeth due to infection and developed diabetes. After suffering a pulmonary embolism, she takes blood thinners to prevent another life-threatening blood clot.

"Everything I used to do has been totally limited to really being a patient," she says. "That's what I am: a professional patient."

Yet, she remains vibrant, even though this summer, after a year-and-a-half-long break from chemotherapy, Josephson got bad news: The cancer had returned and needed to be treated again.

In June, Josephson resumed chemotherapy, for the 15th time in as many years. "I absolutely experienced rage for the very first time ever in all the years," she says. "I was so angry, I was swearing like a sailor. I just couldn't believe it was coming back into my life."

Josephson knows that she's lucky to have had the choice to keep treating her cancer, even while enduring the assault on her body. Choosing to treat the cancer has meant that she has gotten to see both of her sons, Braden and Mark, get married, and four grandchildren have been born. In December, she celebrated her 50th anniversary with her husband, Barry.

The ups and downs have been hard on the family. "You can't function for 15 years with every six months, going into alert mode. You just can't physically and emotionally do that," says Mark, Josephson's younger son.

Both sons are grateful their mother has been able to be around for so long, but they have struggled with how to be supportive during what has become a marathon of treatment.

Her oncologist takes the long view. "There has been a lot of scientific progress in the treatment of cancer," Granai says. "It kind of gets sometimes obscured by the fact that we all always hope for more."

Josephson's is not the story of a cancer patient who beats cancer after intense treatment or the story of a patient who fights but quickly succumbs to the disease.

Barry Josephson (from left), Dixie Josephson, Dr. Skip Granai at Women and Infants Hospital in Providence, R.I., in September.

Paige Cowett/WNYC

Hers is a third kind of story of a patient and family struggling to cope with cancer for the long term. It's a story that more and more families will struggle with as more and more patients survive and manage their cancer as a chronic disease.

When would Josephson decline treatment? "It would be at the point where it was pretty hopeless," she says. "But I haven't gotten to that point yet at all, not in my mind and not in reality. And I've discussed it with the kids, and I said, 'Don't you dare pull the plug on me too fast.' "

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
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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
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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
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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 .
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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.

U.S. Nebraska Says Colorado Pot Isn't Staying Across The Border

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.

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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.


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
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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.

Additional Information: Alzheimer's Diagnosis: How To Break The Bad News

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.' "

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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


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


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.

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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."

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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


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
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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


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.

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