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Abortion-Rights Groups Challenge Restrictions In 3 States

Wed, 11/30/2016 - 3:29pm

People await a decision outside the Supreme Court on June 27. The court struck down a Texas law restricting abortions.

Pete Marovich/Getty Images

There's no shortage of speculation about how the incoming Trump administration, whose appointees so far are staunch abortion opponents, might crack down on access to the procedure.

But reproductive rights groups say the big picture is getting lost: Women in large parts of the country already have limited access to abortion, due to hundreds of Republican-backed laws passed by state legislatures over the past half-decade.

"People are forced to travel hundreds of miles, cross state lines, miss work, lose wages and jeopardize their health and safety to obtain an abortion," says Carrie Flaxman, an attorney with Planned Parenthood.

On Wednesday, Planned Parenthood joined the ACLU and the Center for Reproductive Rights in filing legal challenges to abortion restrictions, targeting laws in three states:

North Carolina. The lawsuit challenges a law banning abortion after 20 weeks of pregnancy, except in the case of a medical emergency. That is several weeks earlier than the generally agreed point of fetal viability, before which the 1973 Roe v. Wade decision says women have a constitutional right to abortion.

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Alaska. A four-decade-old restriction effectively bans second-trimester abortions in outpatient health centers. Abortion-rights advocates say for many women the only option would be to fly out of state, if they can afford it.

Missouri. Restrictions require doctors who perform abortions to have admitting privileges in hospitals, and clinics have to have the same health and safety standards as ambulatory surgical centers. Abortion-rights advocates say this has left the state with just one clinic that provides abortions.

The Missouri laws are similar to those in Texas that were struck down in a landmark Supreme Court ruling last June. Julie Rikelman, interim vice president of the Center for Reproductive Rights, says that precedent could help overturn the other restrictions as well. She says the ruling makes clear that states must consider whether a restriction actually benefits women's health, and they must "look at real and credible evidence." She says, "They can't look at junk science."

In the case of 20-week bans, abortion opponents often claim that fetuses can feel pain at that point, an assertion disputed by most medical research. That claim is not made in the North Carolina law.

Denise Burke, vice president of legal affairs for Americans United for Life, thinks that North Carolina's 20-week ban will withstand this new challenge for another reason. An amendment that took effect this year set a stricter standard for exemptions, saying a woman can have the procedure after 20 weeks only if her life is in danger or there is a "serious risk of substantial and irreversible physical impairment of a major bodily function."

"The plaintiffs are simply saying the exception [in the North Carolina law] is too narrow," Burke says. But even if it's overturned, she does not consider this a broad challenge to other such laws. "Texas' 20-week abortion ban remains in effect, as do 20-week limitations in other states."

Meanwhile, Burke says abortion opponents will continue to push for new restrictions. Texas this week announced it will soon require some aborted fetuses to be buried or cremated, not disposed of as medical waste. Courts have blocked similar measures in Indiana and Louisiana, but Burke says she expects that more states will propose versions of her organization's Unborn Infants Dignity Act when lawmakers convene next year.

The Two-Way Supreme Court Strikes Down Abortion Restrictions In Texas

Burke notes that the Supreme Court ruling also said that health and safety standards can be constitutional if they show evidence of harmful conditions inside clinics that perform abortion. She says, "AUL is preparing a special project to present such evidence."

As reproduction-rights groups launch more legal challenges, they have a new concern. By the time these cases wend their way up to the Supreme Court, President-elect Donald Trump may have appointed one or more justices to it. He has said he will make it a priority to choose people who would overturn the constitutional right to an abortion in Roe v. Wade.

"We know it is now at greater risk than it was before," says Rikelman of the Center for Reproductive Rights. But the right to abortion "has stood the test of time and been approved by a variety of justices appointed by a variety of administrations."

Copyright 2016 NPR. To see more, visit NPR.
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Obamacare's Test Kitchen For Payment Experiments Faces An Uncertain Future

Wed, 11/30/2016 - 1:58pm

Will a change in administration curtail experiments in how the government pays for health care?

Hero Images/Getty Images

Joint replacements. Cardiac care. Chemotherapy.

What do those things have to do with the repeal of the Affordable Care Act?

Well, an often overlooked part of Obamacare is a test kitchen within the Department of Health and Human Services that experiments with new ways for the government to pay for some expensive and frequently used health care services, including those three.

But with the Affordable Care Act up for potential repeal, will Congress preserve the Center for Medicare & Medicaid Innovation, whose goals include lowering costs and improving quality?

Rep. Tom Price, an orthopedic surgeon who is President-elect Trump's choice to run HHS, has been a vociferous critic of Obamacare and the Center for Medicare & Medicaid Innovation. In September, Price and other GOP lawmakers wrote to CMS officials asking that CMMI "stop experimenting with Americans' health, and cease all current and future planned mandatory initiatives."

Shots - Health News Trump Chooses Rep. Tom Price, An Obamacare Foe, To Run HHS

Republican lawmakers have complained — along with some in the health care industry — that the law under the Obama administration gave too much authority to the head of HHS to create and expand projects. Now, however, that very same authority may look appealing as Republicans head the department and may want to use the center to test their own ideas, including those that would revamp Medicare or Medicaid.

"You can dislike that authority, until you have the opportunity to use the authority," said Rodney Whitlock, a vice president at ML Strategies, a government consulting firm in Washington, D.C., and former Republican staff member of the Senate Finance Committee.

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As lawmakers debate and discuss ways to repeal the Affordable Care Act, they will weigh the fate of innovation center, funded through the health law with $10 billion for 2011 to 2019, and another $10 billion for each subsequent decade. The Congressional Budget Office estimates the center would increase federal spending initially, but ultimately result in lower costs and save up to $34 billion over the next 10 years.

Congressional Republicans haven't yet hinted whether they will keep, modify or kill the program, but they generally support the cost-saving goal of the center and many observers think they will want to keep it.

"If health care providers can do a better job of delivering patient care ... at the same or lower costs, that's the kind of flexibility the system needs more of," said Dr. Mark McClellan, a professor of health policy at Duke University who headed Medicare for two years in the George W. Bush administration.

One group that generally supports the broad cost-saving goal of the innovation center, nonetheless warned that Congress should place limits on it. Otherwise, "there is nothing preventing [the center] from testing a model ... that includes all Medicare and/or Medicaid beneficiaries in the U.S," the Healthcare Leaders for Accountable Innovation in Medicare said in a white paper. "In effect [the center] could test a model that completely restructures the Medicare or Medicaid program."

Billions of dollars have already been spent by the center, testing a variety of ideas, from ways to improve care for at-home dialysis to ways to foster more collaboration between doctors and hospitals to efforts to reduce unnecessary hospital visits by chronically ill Medicare patients. Many of the projects look at ways to move from Medicare's traditional fee-for-service payment system — that economists and policymakers say drive up costs — and instead set up reimbursement that rewards coordinated care. Few of the projects have been in place long enough for the center to determine if they truly save money and improve care.

Even if the center were eliminated, many experts say these types of payment reforms will continue because of private sector interest.

"Pay-for-value is going to be a guiding principle going forward irrespective of who is in power," said Dan Mendelson, president and CEO of the consulting firm Avalere Health. "It would surprise me to see wholesale U-turn from that policy."

To date, most of the programs funded by the innovation center are voluntary, but controversy has arisen over several recent initiatives that require participation by doctors or hospitals.

What may happen is that there will be fewer of these mandatory efforts. This year, one such project got underway, testing a method of "bundling" payments for joint replacements at 800 hospitals in 67 metro areas. For their Medicare patients, the project requires a single bundled payment to cover the cost of these procedures, including in-patient and post-operative care, instead of separate payments for each doctor, hospital or nursing home visit. A similar mandatory project for certain kinds of cardiac care has also been proposed.

In the end, the center's future will be determined by whether the Republican majority believes it is one of the best ways to slow rising medical costs, said Christopher Condeluci, principal at CC Law & Policy in Washington, D.C., and the former tax and benefits counsel to the Senate Finance Committee.

"If the answer is yes, they will keep it and it might go to new heights," Condeluci said.

But economist Joe Antos, a resident scholar at the American Enterprise Institute, doesn't think the new administration – or many members of Congress – will push to use the center's authority to create broad, mandatory nationwide experiments with Medicare.

"I can't imagine a Trump administration saying we want the bureaucrats to decide on the health care your grandmother is going to get," said Antos. "Anything that is that much of a marquee issue absolutely has to go through Congress."

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Julie Appleby is on Twitter: @Julie_appleby.

Copyright 2016 Kaiser Health News. To see more, visit Kaiser Health News.
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Glowing Human Cells May Shed Light On Sickness And Health

Wed, 11/30/2016 - 9:08am

In a cluster of glowing human stem cells, one cell divides. The cell membrane is shown in purple, while DNA in the dividing nucleus is blue. The white fibers linking the nucleus are spindles, which aid in cell division.

Allen Institute for Cell Science

A nonprofit research group is giving scientists a new way to study the secret lives of human cells.

On Wednesday, the Allen Institute for Cell Science provided access to a collection of living stem cells that have been genetically altered to make internal structures like the nucleus and mitochondria glow.

"What makes these cells special is that they are normal, healthy cells that we can spy on and see what the cell does when it's left alone," says Susanne Rafelski, director of assay development at the institute. Under a microscope, "they are a wonder to behold," she says.

Dividing cells

Left: A highly magnified time-lapse movie shows the nuclei of glowing human stem cells moving and dividing. The nucleus contains most of a cell's DNA. Right: The nuclei inside a colony of stem cells.

Source: Allen Institute for Cell Science

The cells originally came from skin. But they have the potential to become many different types of cells, including those found in the heart and brain.

And they could help scientists answer basic questions about how cells specialize as they develop, how disease changes a cell and how experimental drugs affect certain types of cells.

"We're creating a powerful resource and a tool that any biologist can use," says Ruwanthi Gunawardane, director of stem cells and gene editing at the Allen institute.

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Initially, the institute is releasing five cell lines through the Coriell Institute for Medical Research. Each line has a different internal structure that glows, allowing researchers to see how that structure moves and changes during a cell's life.

"What's really cool about this is that we can watch the cell as it divides," Gunawardane says.

Any scientist can order the cells online for a price that reflects only the distribution cost. "Our goal was to make this absolutely accessible to any person working on stem cells," Gunawardane says.

Beating Heart Cells

Healthy heart cells beat in a petri dish.

Source: Allen Institute for Cell Science

Until now, many scientists have had to rely on cells that grow abnormally or have mutations, Gunawardane says. And there has been no good way to see a living cell's internal structures without disrupting its normal operation.

The new cell lines are the product of cutting-edge technology found in just a few labs, Gunawardane says. "We would not have been able to do this two years ago," she says.

Copyright 2016 NPR. To see more, visit NPR.
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Millions Of People Are Having An Easier Time Paying Medical Bills

Wed, 11/30/2016 - 12:02am

Juana Rivera (left) speaks with agent Fabrizzio Russi about buying insurance through the Affordable Care Act in Miami in 2014.

Joe Raedle/Getty Images

The number of people who have trouble paying their medical bills has plummeted in the past five years as more people have gained health insurance through the Affordable Care Act and gotten jobs as the economy has improved.

A report from the National Center for Health Statistics released Wednesday shows that the number of people whose families are struggling to pay medical bills fell by 22 percent, or 13 million people, in the past five years.

And that's good news, according to consumer and health policy advocates.

"The effect on families is profound," says Lynn Quincy, director of the Healthcare Value Hub at the Consumers Union. "Health care costs are a top financial concern for families, far above other financial concerns."

Quincy says the No. 1 determinant of whether people can pay medical bills is whether they have insurance.

"The fact that this report shows it's getting easier, it seems like we should lay a good part of this at the door of the ACA," she says.

The decline in families worrying about medical bills corresponds with a huge increase in the number of people who have health insurance. In 2011, 46.3 million in the U.S. were uninsured. In June of this year, that figure had fallen to 28.4 million people.

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Much of that increase is a result of the Affordable Care Act, whose insurance exchanges were launched in 2013 for coverage starting in 2014.

About 20 million people this year have health insurance because of the ACA, according to the Department of Health and Human Services. That includes about 10 million people who gained coverage through the expansion of Medicaid and another 10 million who buy insurance on the Obamacare exchanges or are young adults covered through their parents' insurance.

Kevin Lucia, a research professor at Georgetown's Health Policy Institute, says the insurance offered under Obamacare has more financial protections than pre-ACA policies.

"The coverage is more protective in many ways," he says. "It doesn't include annual limits [or] lifetime limits, and it includes a comprehensive benefit package. That may be contributing to the improved data."

Some of the relief could also come because more people have jobs, so they can more easily pay their bills.

The unemployment rate has fallen from 9.1 percent in January 2011 to just 4.9 percent in June, according to the Bureau of Labor Statistics.

The finding that people are having an easier time paying medical bills may seem surprising because of reports that insurance premiums and cost-sharing have been rising in recent years.

A report in September by the Kaiser Family Foundation shows that more and more companies are offering their employees health insurance plans that carry higher deductibles.

But Quincy says simply having coverage is the key.

"People speak loudest when they are faced with increasing deductibles and increase cost sharing," she says. "But nothing determines the affordability of care more than that binary equation: Do you have coverage or do you not?"

The report comes just as President-elect Donald Trump is naming officials to his health policy team who are determined to dismantle the Affordable Care Act. Trump has pledged to repeal and replace the health law, and on Tuesday named Rep. Tom Price, R-Ga., a vocal opponent of Obamacare, to lead the Department of Health and Human Services.

Repealing the law would hurt the people who are seeing relief from high medical bills as highlighted in this report, says Jay Angoff, a former Missouri insurance commissioner who helped implement the Affordable Care Act at HHS.

"There are millions of people who have coverage under Obamacare," Angoff says. "What are they going to tell those guys?"

Copyright 2016 NPR. To see more, visit NPR.
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It's Never Too Late To Quit Smoking, Even In Your 60s

Wed, 11/30/2016 - 12:02am

One more coffee, one more cigarette/One more morning, trying to forget — Van Morrison, You Just Can't Win.

Bob Thomas/Getty Images

Older people who smoke may think there's no reason to give up the habit. After all, hasn't the damage to their bodies already been done?

But it turns out there's a benefit to quitting even later in life. Research published Wednesday in the American Journal of Preventive Medicine finds that older adults who quit smoking in their 60s had a lower chance of dying in the years that followed than contemporaries who kept smoking.

"It's never too late," says Sarah Nash, an epidemiologist and one of the study's authors.

The results are based on data from more than 160,000 participants older than 70 who were part of the NIH-AARP Diet and Health Study. Participants completed questionnaires about their smoking history in 2004 or 2005 and were tracked until the end of 2011 to see who had died.

The study found that it's definitely best to avoid smoking entirely. During the follow-up period, 12 percent of participants who never smoked died, compared to 33 percent of current smokers. And the earlier people quit the better, but there was still a benefit even for late quitters. Of those who quit in their 30s, 16 percent died. In their 40s: 20 percent. In their 50s: 24 percent. And in their 60s: 28 percent.

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Still, people who quit in their 60s had a 23 percent lower risk of death during the study than current smokers, says Nash, who conducted the research while she was a fellow at the National Cancer Institute.

One limitation of the study is that the "current smoker" category included anyone who was smoking when they completed the questionnaire, which means it likely included people who went on to quit during the follow-up period. But if that happened to a significant degree, the true mortality gap between people who smoke and those who quit would only be larger.

The researchers also looked at deaths from smoking-related diseases, including lung cancer, heart disease and respiratory infections, and saw similar trends.

The research also reinforces the well-known point that it's important to try to prevent people from picking up the habit in the first place. Most smokers start during their teenage years, according to the Centers for Disease Control and Prevention. And among current smokers, the earlier the study participants started, the higher their likelihood of dying during the follow-up period. Of those who started when they were younger than 15, 38 percent died, compared to 23 percent of those who started when they were 30 or older.

Shots - Health News To Quit Smoking, It's Best To Go Cold Turkey

Until now there have been hints from other research, but no solid proof, that people in their 60s and 70s could benefit from quitting.

"Based on less substantial data, we've been telling the public that it's never too late to quit, because it will benefit health and prolong life," says Norman Edelman, a physician and senior scientific adviser to the American Lung Association who wasn't involved with the study. Now, he says, he'll have more concrete evidence to offer to patients, especially to older smokers who assume that the damage from years of tobacco use can't be reversed.

Edelman says he gives the same smoking cessation advice to older smokers as to younger ones: Use a program (the ALA has its own, as does the American Cancer Society) in conjunction with pharmaceutical help, such as nicotine replacement products or prescription medications (such as Chantix or Zyban). Your odds of success are greater if you use both, he says.

He says older smokers should be sure to speak with their physicians about potential side effects of tobacco cessation medications.

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

Copyright 2016 NPR. To see more, visit NPR.
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Trump Picks Seema Verma To Run Medicare And Medicaid

Tue, 11/29/2016 - 5:18pm

Seema Verma, now in line to head the Centers for Medicare & Medicaid Services, arrives at Trump Tower in New York City on Nov. 22.

Drew Angerer/Getty Images

President-elect Donald Trump unveiled two big health care decisions Tuesday.

He picked Rep. Tom Price to head the Department of Health and Human Services and tapped Seema Verma, a health care consultant, to head the Centers for Medicare & Medicaid Services. That's the part of HHS that oversees Medicare, Medicaid, and the Children's Health Insurance Program and has a budget of just under a trillion dollars in 2016.

Verma comes to the job with extensive Medicaid experience. Her consulting firm, SVC, Inc., worked closely with Indiana Gov. Mike Pence to design Indiana's Medicaid expansion under the Affordable Care Act. The expansion, known as the Healthy Indiana Plan 2.0, went into effect early last year, and Verma's involvement in it may prove important as Congress and the Trump administration, including the Vice-president elect, make decisions on the future of Obamacare.

Indiana's unique Medicaid expansion was designed to appeal to conservatives. HIP 2.0 asks covered people to make a small monthly payment to access health insurance. A missed payment can result in six-month lockout from insurance coverage. Those provisions aren't allowed under traditional Medicaid, but Indiana got a federal waiver to implement them.

Article continues after sponsorship Shots - Health News 5 Things To Know About Rep. Tom Price's Health Care Ideas

Other Republican-led states, such as Iowa, Ohio and Kentucky, have contracted with Verma's firm to help submit their own Medicaid expansion proposals to the federal government that also include conservative provisions such as asking recipients to pay for some of their care, requiring them to work or to be actively looking for work.

Susan Jo Thomas, who heads the Indiana insurance advocacy group Covering Kids and Families, says Verma's contributions to HIP 2.0 made Medicaid expansion possible in a Republican state. "She understood that in order to get expansion in this state, it's more about what is palatable, what can get approved," she says.

Nearly 410,000 people are members of HIP 2.0, according to the latest data from the state.

But the Indiana approach has its critics. David Machledt, a policy analyst with the National Health Law Program, argues that provisions like denying coverage for a certain period of time or charging copays reduce participation. "Early evaluations show that a lot of people don't understand this plan and don't understand the incentives in it," he says. That means people end up not getting the health care they need.

Nevertheless, Machledt says, if Medicaid expansion continues, Trump's pick of Verma to head CMS could mean that proposals like Indiana's may be more likely to be approved.

Policy analyst Joan Alker, with the Georgetown Center for Children and Families, finds it worrisome. "It is a good thing that she has experience with Medicaid and it is a positive that Gov. Pence worked with Ms. Verma to advance a version of Medicaid expansion," she says. "But I think if you look at the totality of the Trump administration's picks today — Congressman Price as well as Ms. Verma — this represents potentially a very damaging and chaotic restructuring of the Medicaid program." Price has advocated severely cutting Medicaid funding, and Alker worries that cuts and more stringent requirements under Verma would mean people will lose the health insurance.

"The Healthy Indiana Plan has occurred in the context of generous federal funding," she says. "And I think some of that is on deck to go away."

But Verma may be a smart pick, says Indiana Rep. Charlie Brown, the ranking Democrat in the state's public health committee. "She is a smooth operator, and very, very persuasive," he says. Brown worked in opposition to Verma in crafting the Healthy Indiana Plan, but said she was effective across party lines at incorporating the Pence administration's wishes.

"She's very resourceful and intelligent," says Brown. "But the question now becomes, 'What will be her marching orders as they relate to Medicare and Medicaid?' "

Verma's role in shaping Indiana's health care policy has had some controversy. According to a 2014 report from The Indianapolis Star, she has received millions of dollars from the state through her work with the Indiana government. She was also paid by Hewlett-Packard, a Medicaid vendor that received more than $500 million in state contracts. Government ethics experts told the Star the arrangement presented a conflict of interest.

Verma didn't immediately respond to requests for comment, nor did Gov. Pence's office.

Jake Harper reports from member station WFYI in Indianapolis. This story is part of a reporting partnership with NPR, Side Effects Public Media and Kaiser Health News.

Copyright 2016 Side Effects Public Media. To see more, visit Side Effects Public Media.
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Congress Poised To Pass Sweeping Law Covering FDA And NIH

Tue, 11/29/2016 - 4:09pm
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November 29, 20164:09 PM ET Heard on All Things Considered

Rep. Diana DeGette, D-Colo., and Rep. Fred Upton (right), R-Mich., who have spearheaded the 21st Century Cures Act, speak after a 2015 House of Representatives vote in its favor.

Congressional Quarterly/CQ-Roll Call, Inc./Getty Images

Updated Dec. 1, 9:05 a.m.: The House of Representatives voted overwhelmingly on Wednesday to approve the 21st Century Cures Act, a sprawling bill to fund medical research and revamp how drugs and medical devices are approved by the Food and Drug Administration.

The bill passed on a vote of 392-26. The Senate could vote on the bill early next week. It has garnered support from a wide variety of advocacy groups, industry lobbyists and the Obama administration. One notable dissident is Sen. Elizabeth Warren, D-Mass., who said her colleagues have "let Big Pharma hijack the Cures bill."

Legislation to bolster medical research and revamp the way new drugs and medical devices are approved is on the fast track through a Congress that has had little success to celebrate this year.

Shots - Health News Legislation That Would Shape FDA And NIH Triggers Lobbying Frenzy

The House could vote Wednesday on a vast bill that stretches nearly a thousand pages and holds changes large and small for the National Institutes of Health and the Food and Drug Administration.

Analysts are still picking through the law, which has bipartisan support. They are raising both hope and concern about its sweeping provisions.

Advocates for biomedical research are happy to see billions of dollars in new funding for the NIH and associated projects. (The money will come, in part, from portions of the Affordable Care Act that are on the chopping block following the November election.)

The National Institutes of Health budget has slipped about 20 percent over the past decade in terms of buying power. The 21st Century Cures Act does little to offset that decline, but it does include billions of research dollars for some new high-profile projects, such as Vice President Biden's push to accomplish 10 years of cancer research in half that time.

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"The Cancer Moonshot is emblematic of the way our nation should feel about medical progress," says Ellie Dehoney, vice president of policy and advocacy at Research!America. "It should be a top priority and we would be devoting more resources, more time and more of our intellectual capital to that goal."

The bill also promises faster action on potential new drugs and devices. And this is where some of the concerns come in.

"It is a massive bill that has scattered throughout a grab bag of goodies for the medical device and pharmaceutical industries," says Dr. Michael Carome, director of Public Citizen Health Research Group.

More than 1,455 lobbyists had a hand in the bill, according to Kaiser Health News, which scoured records at the Center for Responsive Politics. So Carome says the legislation isn't all about helping sick people get better.

He's concerned that some parts of the bill would allow drugs to be approved on thinner evidence than they now require.

"There's no doubt that patients would like to get treatments faster to the market, but they need to be assured those treatments are safe and effective for each of those marketed uses," Carome says.

The new law would allow a drug approved for one purpose to be used for a related disease without going through the entire approval process, he said. Carome worries that measure could put patients at risk.

The Food and Drug Administration has been working faster on drug approvals, even without the new legislation. Drugs can be approved based on inferences that they work, but without proof of a long-term benefit. Researchers use a "surrogate endpoint," such as tumor's response to a drug, even though that response may not lead to a longer or healthier life.

The faster approach doesn't always work out as planned. Diana Zuckerman, who heads the National Center for Health Research, points to a study that found 18 of the 36 cancer drugs recently approved on the basis of surrogate endpoints turned out not to help people live longer.

"What's happening is we are flooding the market with medical products that don't work very well, or we don't know whether they work," Zuckerman says.

She has a new study (slated for publication in JAMA Internal Medicine, but not yet in print) showing that often these new cancer drugs don't even improve the quality of life for these cancer patients, despite the drugs' soaring price tags.

Zuckerman say she's concerned that the 21st Century Cures act will make it even easier for drug companies to use this express lane for approval.

Former FDA Commissioner Mark McClellan agrees that the agency doesn't have a good track record following up on provisionally approved drugs. "A lot of follow-up studies have not been performed or have not been performed well because we don't have good systems in place to learn about drugs once they are on the market," he says.

But Dr. McClellan, who served in the George W. Bush administration and is now director of the Margolis Center for Health Policy at Duke University, expects the new legislation to improve that situation.

McClellan is also happy to see that the legislation gives the FDA more latitude to consider the needs and views of patients when weighing judgments.

Frank Sasinowski, at the law firm Hyman, Phelps & McNamara, notes that the laws governing the FDA didn't even mention patients until 2008 — more than 100 years after the agency was founded. The entire system was geared toward pharmaceutical companies and makers of medical devices.

"This bill, if it were to become law, would even give more prominence to the role of the patient in this process," he says.

Sasinowski, who has represented the pharmaceutical industry, also lauds the part of the 21st Century Cures Act that would help the FDA fill more than 600 vacant positions — jobs that have remained open because the pay hasn't been competitive.

At the moment, Sasinowski says, "it's impossible to find good people to come to the FDA even though it is maybe the most important public health function in our nation." If the bill sails through the House and Senate, as some analysts expect, it could reach President Obama's desk before the end of the year.

You can email Richard Harris at

Copyright 2016 NPR. To see more, visit NPR.
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5 Things To Know About Rep. Tom Price's Health Care Ideas

Tue, 11/29/2016 - 11:59am
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November 29, 201611:59 AM ET Heard on All Things Considered

Rep. Tom Price has introduced his own alternative to the Affordable Care Act four times. The legislation provides an idea of how he might lead the Department of Health And Human Services.

Andrew Harrer/Bloomberg via Getty Images

Georgia Rep. Tom Price has been a fierce critic of the Affordable Care Act and a leading advocate of repealing and replacing the 2010 health care law.

Price, an orthopedic surgeon from the suburbs of Atlanta, introduced his own legislation to repeal and replace Obamacare in the current Congress and the three previous sessions. Price's plan, known as the Empowering Patients First Act, was the basis for a subsequent health care proposal unveiled by House Speaker Paul Ryan, with Price's endorsement, in June.

Price's major complaint about the ACA is that it puts the government in the middle of the doctor-patient relationship.

Shots - Health News Trump Chooses Rep. Tom Price, An Obamacare Foe, To Run HHS

"They believe the government ought to be in control of health care," Price said in June at the American Enterprise Institute event where Ryan unveiled the Republican proposal to replace Obamacare. "We believe that patients and doctors should be in control of health care," Price continued. "People have coverage, but they don't have care."

Now that President-elect Donald Trump has tapped Price to lead the Department of Health and Human Services, here are five key planks in his own health care proposal.

  1. Price's plan offers fixed tax credits so people can buy their own insurance on the private market. The credit starts at $1,200 a year and rises with age, but isn't adjusted for income. Everyone receives the same credit whether they are rich or poor. People on Medicaid, Medicare, the military health plan known as Tricare, or the Veterans Affairs' health plan could opt instead for the tax credit to buy private insurance.
  2. Price advocates for expansion of health savings accounts, which allow people to save money before taxes to pay for health care. This includes allowing people who are covered by government health programs including Medicare and the VA to contribute to health savings accounts to pay for premiums and copayments. These proposals are included in Ryan's plan.
  3. People with existing medical conditions couldn't be denied coverage under Price's plan as long as they had continuous insurance for 18 months prior to selecting a new policy. If they didn't, then they could be denied coverage for that condition for up to 18 months after buying a new plan.
  4. The Price proposal limits the amount of money companies can deduct from their taxes for employee health insurance expenses. Companies can deduct up to $20,000 for a family health insurance plan and $8,000 for an individual. The goal is to discourage companies from offering overly generous insurance benefits to their workers. Ryan's plan proposes a cap on the employer tax deduction but doesn't specify the level of the cap.
  5. States would get federal money to create so-called high-risk pools under Price's plan. These are government-run health plans for people with existing medical conditions who can't get affordable health insurance on the private market. Critics say high-risk pools have been tried in as many as 34 states and largely failed because they were routinely underfunded.
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Price has said he's not wedded to his own ideas and is open to compromise, so the final proposal to replace Obamacare is likely to be a hybrid of his ideas and those hammered out with other Republican House members and presented as Ryan's plan.

Still, with Price on track to be at the helm of HHS, he would be the one writing the rules to implement whatever legislation is eventually passed.

Copyright 2016 NPR. To see more, visit NPR.
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Women Could Pay More Than Men For Health Care Under Trump

Tue, 11/29/2016 - 11:44am
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Some women have been worried that they will lose insurance coverage for contraception under the Trump administration, but coverage for other women's health benefits could also be at risk.

At or near the top of the list is guaranteed coverage of maternity services on the individual insurance market. Before the health law, it was unusual for plans purchased by individuals to cover prenatal care and childbirth. But the Affordable Care Act requires that maternity care be included as one of 10 essential health benefits.

In 2009, the year before the health law passed, just 13 percent of individual plans available to a 30-year-old woman living in a state capital offered maternity benefits, according to an analysis by the National Women's Law Center.

Some plans offered maternity services as an add-on through a special rider that paid a fixed amount, sometimes just a few thousand dollars, the study found. But even with a rider, a woman's financial exposure could be significant: The total payment for a vaginal birth was $18,329 in 2010, according to a study by Truven Health Analytics.

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Before Obamacare, women were also generally charged higher rates for health insurance than men on the individual market. According to the law center's analysis, 60 percent of best-selling individual plans in 2009 charged a 40-year-old nonsmoking woman more than a 40-year-old man who smoked, even in plans that didn't include any type of maternity coverage.

That inequity disappeared under the health law, which prohibited insurers from charging women higher rates than men for the same services.

"Our concern is going back to a world where insurance companies are writing their own rules again, and returning women to those bad old days in health care and losing all the progress we've made," says Gretchen Borchelt, vice president for reproductive rights and health at the National Women's Law Center.

And preventive health services for women could be on the line if the health law is repealed or changed. Some may be easier to get rid of than others, say women's health policy analysts.

Under Obamacare, preventive services recommended by the U.S. Preventive Services Task Force have to be covered without copays or deductibles. The task force, an independent panel of medical experts, evaluates the scientific evidence for screenings, medications and services. That currently includes recommendations on screening for breast and cervical cancer and testing for the BRCA 1 and 2 genetic mutations that increase women's risk of breast cancer.

"Coverage of those services can't be changed without a change to the statute" that created the health law, says Dania Palanker, an assistant research professor at Georgetown University's Center on Health Insurance Reforms. If the law is repealed, then that could happen.

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Coverage for contraception and other services endorsed by the Health Resources and Services Administration could be easier to eliminate. In 2011, the Institute of Medicine proposed a list of eight preventive services that should be covered without cost sharing, and HRSA adopted them. That includes all contraceptives approved by the Food and Drug Administration, which most insurers must cover without charging women anything out of pocket.

Also included are requirements to cover well-woman visits at least once a year; screening for gestational diabetes; counseling and screening for sexually transmitted infections; breast-feeding support, counseling and supplies; and screening and counseling for domestic violence.

Changes to that list were proposed earlier this year by a committee led by the American College of Obstetricians and Gynecologists. The additions include coverage without copays for mammograms starting at age 40 and for follow-up tests after mammograms such as biopsies. That update is under review by federal officials.

"We expect action will be taken before the end of this administration," says Palanker.

But the Trump administration may not have the same ideas about which preventive benefits for women insurers should be required to cover.

Shots - Health News Trump Chooses Rep. Tom Price, An Obamacare Foe, To Run HHS

Rep. Tom Price, R-Ga., whom President-elect Donald Trump chose Tuesday for secretary of health and human services, in the past has introduced legislation to repeal and replace the ACA.

"What they can endorse they can also unendorse," says Adam Sonfield, a senior policy manager at the Guttmacher Institute, a research and advocacy organization for reproductive health based in Washington, D.C.

Finally, many of the details about what's required by the ACA have been spelled out in thousands of pages of regulations and guidance. The new administration could write different rules or just not enforce the ones that are on the books.

Take coverage for birth control. Some health plans initially interpreted the requirement to cover FDA-approved contraceptives to mean that if they covered birth control pills, for example, they didn't have to cover other hormonal methods of contraception such as the vaginal ring or patch. Federal officials under Obama have declared that insurers couldn't pick and choose; they had to cover all 18 FDA-approved methods of birth control.

"A lot of the pieces of the preventive services benefits that clarify and make the coverage real and strong have been through [federal officials'] guidance, and there is fear that could be changed," Palanker says.

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Michelle Andrews is on Twitter: @mandrews110

Copyright 2016 Kaiser Health News. To see more, visit Kaiser Health News.
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Zika Pregnancies And Big Questions In Puerto Rico

Tue, 11/29/2016 - 10:04am

Anti-Zika advice applied to a wall in front of a housing project in the Puerta de Tierras section of San Juan, Puerto Rico. This public health message was part of an island-wide effort to stem the spread of Zika.

Angel Valentin/Getty Images

The number of new Zika cases in Puerto Rico has dropped dramatically in recent weeks, yet health officials worry the full effect of the outbreak on the island may not be known for months or years to come.

Puerto Rico has confirmed more than 34,000 Zika infections since the virus was first detected on the island in November 2015.

Tyler M. Sharp, acting head of epidemiology at the Center for Disease Control and Prevention's Dengue Branch in San Juan, says the outbreak peaked during the summer.

"In mid-August we were at more than 2,000 [confirmed] lab cases per week coming in," Sharp says. "Now we are at a little over 200 per week, so the numbers are down from where they were at the worst part of the outbreak. But there is continued transmission, so there's continued risk both to pregnant women and everybody else who's present on the island."

Sharp says that compared with other mosquito-borne outbreaks, such as chikungunya or dengue, the spread of Zika in the U.S. territory this year was huge.

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"The number of Zika virus disease cases that we've documented in Puerto Rico in the last year is substantially larger than we've seen for any dengue epidemic in the last ..." he pauses to ponder how long, "Well, ever."

That's in part because dengue has been circulating in the territory for decades.

"Many people in Puerto Rico have immunity against dengue," Sharp explains. "When Zika was introduced nobody had immunity, so effectively everybody was susceptible."

Zika Virus Puerto Rico Health Official 'Very Concerned' About Zika's Spread

The tricky thing about Zika is that most people who get infected have mild cases; some don't have any symptoms at all. But the virus has also been linked to neurological problems, including severe birth defects such as microcephaly.

Health officials' greatest concern about Zika has been its potential effect on pregnant women and their developing fetuses. More than 2,600 pregnant women on the island have tested positive for Zika infections. Dr. Brenda Rivera, the territorial epidemiologist with the Puerto Rico Department of Health, says among those pregnancies only a handful of fetal abnormalities have been confirmed. Most of those were seen in pregnancies that were aborted or didn't go all the way to term.

"We still don't know what the implications are of having been infected during pregnancy," she says. "We still don't know if you're going to show developmental problems later on. You might be normal at birth with normal head circumference, no overt structural abnormalities but what developmental problems we might see in these kids later on, that's still a question that hasn't been satisfactorily answered."

A study out of Brazil published Nov. 22 found that some babies exposed to Zika in the womb and who weren't born with microcephaly ended up developing it later on. Those children however did show abnormalities on brain scans at birth.

Researchers and health officials, including Rivera in Puerto Rico, say huge questions about this virus and its effects on pregnancy remain.

Even though transmission of Zika appears to have peaked in Puerto Rico, Rivera says the real work of figuring this disease out lies ahead. She and her colleagues have their eyes on more than 2,600 pregnancies. "About half of those are still ongoing," she says. "So there's a lot that we still need to monitor, and our intent is to monitor the children of these pregnancies for up to three years to better understand the scope of the disease."

Copyright 2016 NPR. To see more, visit NPR.
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Trump Chooses Rep. Tom Price, An Obamacare Foe, To Run HHS

Mon, 11/28/2016 - 10:28pm

Rep. Tom Price (center) appeared in early 2016 before the House Rules Committee, when he sponsored legislation that would repeal President Obama's signature health care law.

J. Scott Applewhite/AP

Rep. Tom Price, a Georgia Republican, is President-elect Donald Trump's pick for Secretary of Health and Human Services. He is currently chairman of the powerful House Budget Committee.

Price, an orthopedic surgeon for nearly 20 years before coming to Congress, has represented the northern Atlanta suburbs in the House of Representatives since 2005.

If confirmed by the Senate, Price would likely have a central role in the Republicans' stated plans to dismantle the Affordable Care Act and design a replacement. He has repeatedly introduced legislation to repeal and replace the ACA and is one of hundreds of Republicans who have voted dozens of times to repeal the federal health care law since it was enacted in 2010. Those efforts either didn't make it to President Obama's desk or were vetoed by him.

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As HHS secretary, Price would not only oversee Obamacare as it currently exists, but also run the government's largest social programs, including Medicare, Medicaid and the Children's Health Insurance Program. He would also have authority over the Food and Drug Administration, the Centers for Disease Control and Prevention, the National Institutes of Health and other major health agencies.

HHS employs nearly 80,000 people and is the largest source of funding for medical research in the world.

Politically, Price is conservative. He opposes abortion rights, receiving a 2016 rating of 0 by Planned Parenthood and 100 percent by National Right to Life. He has voted against legislation aimed at prohibiting job discrimination based on sexual orientation; for a constitutional amendment to define marriage as between one man and one woman; and against the bill that would've ended the don't-ask-don't-tell policy regarding disclosure of sexual orientation in the military.

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He has also voted against:

  • federal funding for abortion;
  • funding for groups like Planned Parenthood;
  • a law that now requires the FDA to regulate tobacco as a drug; and
  • a bill that would have provided four weeks of parental leave for federal employees.

In 2007, Price voted in favor of a bill that would have granted the so-called pre-born equal protection under the 14th Amendment.

In 2015, Price wrote the language for a bill that is now seen as one of the main paths forward to repeal portions of the ACA. It would employ the same budget reconciliation rules Democrats used to originally pass the law in 2010, but instead the GOP plan would defund Obamacare.

This reconciliation option would leave in place the basic structure of the ACA, including the insurance exchanges and rules that require insurers to cover existing conditions and permit young adults to stay on their parents' insurance policies until age 26.

But without funding, the exchanges are likely to see an exodus of insurance companies, particularly if expensive requirements are kept in place.

Price, 62, lives in Roswell, Ga., with his wife Betty. He received his medical degree from the University of Michigan.

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Flu Vaccine During Pregnancy Not Linked To Autism

Mon, 11/28/2016 - 3:53pm

Flu shots are recommended for all pregnant women.

PhotoAlto/Michele Constantini/Getty Images

Getting the flu while pregnant doesn't appear to increase the child's risk of being diagnosed with autism later on, a study finds, and neither does getting a flu shot while pregnant.

The study, published Tuesday in JAMA Pediatrics, tries to tease apart subtle questions of risk and risk avoidance. Some smaller, earlier studies have found an association between serious viral infections in pregnancy or maternal fever in pregnancy and increased autism risk. This much larger study finds no such ties, though the authors note that it shouldn't be the last word on the topic.

This study examined the health records of 196,929 children who were born at Kaiser Permanente facilities in Northern California between 2000 and 2010. They found that 3,101 children, or 1.6 percent, had been diagnosed with autism through June 2015.

The researchers then looked at the mothers' health records to see if they had been diagnosed with flu while pregnant and whether they'd gotten a flu shot. Less than 1 percent of women had the flu; about 23 percent got a flu shot while pregnant, a number that rose from 6 percent in 2000 to 58 percent in 2010.

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They found no correlation overall between having the flu while pregnant and increased autism risk in children.

The study did find a slightly increased risk of autism when mothers had a flu shot in the first trimester of pregnancy. But that could be due to chance, the researchers say, given the small numbers of children in that group and the multiple hypotheses the study tested.

"We feel it should be reassuring for prospective mothers," says Lisa Croen, a senior research scientist for Kaiser Permanente and senior author of the study. "The way we feel people should interpret this is that there is really not any increased risk for autism, and we're recommending no changes in the vaccine policy."

The Centers for Disease Control and Prevention and obstetric and pediatric medical societies currently recommend that all pregnant women get a flu shot. That's because getting the flu is riskier while pregnant, and it increases the risk of premature birth and low birth weight for the baby. It also protects the baby against flu in the first few months of life.

"We know that pregnant women are particularly vulnerable," Croen says, "There are lots of changes in their immune system and lungs and heart. It's especially important to protect pregnant women against the flu."

Still, Croen and her colleagues say that more study needs to be done on the question, especially since other studies have found that maternal immune responses during pregnancy may be associated with increased risk of autism.

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This study also didn't look at whether the flu vaccine that women got included the preservative thimerosal. Multiple studies have found no link between thimerosal, which contains small amounts of ethyl mercury, and autism or other developmental problems, but in 1999 the Food and Drug Administration recommended that the preservative be removed from vaccines given to infants because of concerns about vaccine safety. Multidose containers of flu vaccine are among the few vaccines that still contain thimerosal.

The idea that vaccines could cause autism was popularized by Andrew Wakefield, a British doctor who published a paper in 1998 saying that the MMR vaccine caused autism. The paper was later shown to have been faked and was retracted in 2010. That same year, Wakefield lost his license to practice medicine in the U.K. But the notion that vaccines cause autism continues to affect vaccination rates in Britain and the U.S.

Copyright 2016 NPR. To see more, visit NPR.
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Big Data Coming In Faster Than Biomedical Researchers Can Process It

Mon, 11/28/2016 - 2:04pm
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November 28, 20162:04 PM ET Heard on All Things Considered Katherine Streeter for NPR

Biomedical research is going big-time: Megaprojects that collect vast stores of data are proliferating rapidly. But scientists' ability to make sense of all that information isn't keeping up.

This conundrum took center stage at a meeting of patient advocates, called Partnering For Cures, in New York City on Nov. 15.

On the one hand, there's an embarrassment of riches, as billions of dollars are spent on these megaprojects.

There's the White House's Cancer Moonshot (which seeks to make 10 years of progress in cancer research over the next five years), the Precision Medicine Initiative (which is trying to recruit a million Americans to glean hints about health and disease from their data), The BRAIN Initiative (to map the neural circuits and understand the mechanics of thought and memory) and the International Human Cell Atlas Initiative (to identify and describe all human cell types).

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"It's not just that any one data repository is growing exponentially, the number of data repositories is growing exponentially," said Dr. Atul Butte, who leads the Institute for Computational Health Sciences at the University of California, San Francisco.

One of the most remarkable efforts is the federal government's push to get doctors and hospitals to put medical records in digital form. That shift to electronic records is costing billions of dollars — including more than $28 billion alone in federal incentives to hospitals, doctors and others to adopt them. The investment is creating a vast data repository that could potentially be mined for clues about health and disease, the way websites and merchants gather data about you to personalize the online ads you see and for other commercial purposes.

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But, unlike the data scientists at Google and Facebook, medical researchers have done almost nothing as yet to systematically analyze the information in these records, Butte said. "As a country, I think we're investing close to zero analyzing any of that data," he said.

Prospecting for hints about health and disease isn't going to be easy. The raw data aren't very robust and reliable. Electronic medical records are often kept in databases that aren't compatible with one another, at least without a struggle. Some of the potentially revealing details are also kept as free-form notes, which can be hard to extract and interpret. Errors commonly creep into these records.

And data culled from scientific studies aren't entirely trustworthy, either.

"So many articles that are published today are going to be wrong in 10 years," said Greg Simon, who leads the Cancer Moonshot. "That's just the history of scientific research, and the question is you just don't know which ones are going to be wrong."

Scientists trying to figure out how to analyze that flood of big data are going to have to cut through the dissonance to find a melody. That takes skill.

"In a world when anything is possible because you have so much data, how do you figure out who has done the math right?" asked Food and Drug Administration Commissioner Robert Califf.

He said the only way to know for sure is to take ideas gleaned from the big datasets and then try them out in people. That means persuading patients to participate in studies.

Just a small percentage do today, "and what we're seeing in our best academic centers, the clinicians say they don't have time to talk to patients about participating in studies," Califf said. "So, far and away this is our No. 1 issue that we're focused on with big data."

These problems aren't just abstractions for Sonia Vallabh. Her mother died of a rare, fatal genetic disease in middle age, called prion disease. Vallabh carries the same mutation that afflicted her mother. Vallabh quit her job as a lawyer and is now seeking a doctorate in biological and biomedical sciences at the Broad Institute in Cambridge, Mass.

Vallabh turned to a huge data set of genetic information to see what she could learn about her condition. "It basically confirmed what we thought we knew about my genetic mutation, which is it makes me almost 100 percent likely to die this way by midlife," she said.

But the data also yielded a surprise. Her disease is caused by having too much of a certain protein in her body. And some people with only half as much of this dangerous protein didn't get sick and die.

"So, here's an experiment of nature handed to us on a platter by big data, that says if we can find a way to turn down this disease protein, this protein that wants to kill me, that should be a safe way to delay or prevent disease."

But that's not a question to be answered through data-crunching. Vallabh needs the old-fashioned kind of medical research — laboratory and clinical science — to develop a drug that would reduce the protein safely and effectively.

You can email Richard Harris at

Copyright 2016 NPR. To see more, visit NPR.
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Patients Increasingly Influence The Direction Of Medical Research

Mon, 11/28/2016 - 4:51am
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November 28, 20164:51 AM ET Heard on Morning Edition Hanna Barczyk for NPR

Patients and their advocates are getting an ever-larger voice in how medical research is carried out. They participate in the design of experiments and have a greater say in what outcomes they care about most — and it's not always simply living longer.

Sharon Terry has lived through a couple of decades during which patients went from being complete outsiders to participants. She worries now that they risk being co-opted by the medical research juggernaut.

Her story started in Boston in the mid-1990s, when she discovered that her two young children had been born with a rare genetic disease called pseudoxanthoma elasticum. It's a progressive disorder that causes connective tissue to gradually get hard, and can impair, skin, eyes and blood vessels.

"Researchers came and took blood from us and our kids," Terry says.

A few days later, another set of researchers wanted to take blood, too.

"We didn't understand why they weren't sharing. And we also didn't understand why they weren't working together," she says.

Terry, who is now 60 and lives in Washington, D.C., was a college chaplain before stopping to raise her family. She and her husband, a construction manager, came to realize that the researchers weren't so interested in treating their kids. Their first priority was to probe the biology underlying the rare disease. Academics are rewarded for advancing the frontiers of biology.

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"We [as parents] look at things differently," Terry says. "We look at what matters to us, and not some biological pathway that absolutely is important but isn't going to give us the answers we need right away."

So Terry and her husband took matters into their own hands. They sweet-talked their way into borrowing a lab bench at Harvard University and set about tracking down the gene responsible for their children's connective-tissue disease.

Sharon Terry founded a patient advocacy group called Genetic Alliance after her children were diagnosed with a rare disorder.

Courtesy of Sharon Terry

"My husband likes to say our neuroses took over and made us gutsy enough to go to Harvard and say, 'Could we borrow some bench space at night; could we learn from some postdocs how to look for the gene?' "

With no science background it took them a couple of years, but remarkably, they did find the gene.

"Then we put together a diagnostic test based on the gene. And now we're actually looking at therapies that might involve different variations in the gene," Terry says.

This is not a typical story of how parents end up getting involved in medical research, but it isn't unique, either.

"When we did it, it was paving a new way, but there have been hundreds of people after us to do similar things," Terry says.

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Often these explorations start when a parent notices something that seems not quite right with a child. Doctors may be dismissive, so parents end up heading onto social media, where they can connect with other parents who share similar concerns.

There are now hundreds of patient groups, focusing on everything from arthritis to xeroderma pigmentosum. And patient participation in medical research is no longer an informal matter. The concept is written into federal laws, including one that funds the Food and Drug Administration. Since 2013, the FDA has held more than 20 meetings in which patients are invited to lay out what actually matters to them.

In September, the topic was organ transplant recipients. And among the people who spoke up was Lindsey Duquette, a 14-year-old with remarkable poise. She said she had been in and out of the hospital 172 times before she got a kidney transplant when she was 10.

"Here are some items on my post-transplant wish list," she told the panel of FDA officials and the crowd of other transplant recipients.

"How about a transplanted kidney that will last the rest of my life? Fewer toxic medications, and it would be great if meds could be taken just once a day."

She also wishes the immunosuppression drugs she must take twice daily didn't pose a lifetime cancer risk.

"I think the fact that they're holding the events — it's well-organized and well-planned — indicates that they're taking it very seriously," says Kevin Longino, who heads the National Kidney Foundation. Companies seem to develop drugs without regard to what patients actually value most, Longino says, and "I think patients have very little influence with drug companies."

The FDA historically hasn't considered its work from the patient's point of view. It generally starts with a company pitching a new drug and is supposed to answer the narrower question: Is the product safe and effective? Now that the FDA knows what patients care about, it can suggest that drug companies measure those outcomes in the course of testing new products.

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The FDA has already demonstrated that it's paying more attention to what patients want. Earlier this year, after hearing impassioned pleas from parents and their scientific allies, the agency temporarily approved a drug for Duchenne muscular dystrophy, even though the science in hand didn't provide proof positive that the drug was effective.

Patients considered that a victory. And the company could start selling its drug for $300,000 per patient per year.

"The bad news about what's happening is that so much of patient input is involving patients who are working with or who are recruited by drug companies," cautions Diana Zuckerman, who runs a consumer group called the National Center for Health Research.

These companies pour millions of dollars into disease advocacy organizations and provide information to patients. So the patient voices are sometimes inadvertently channeling commercial interests, Zuckerman says.

With that system, patients also hear more about potential benefits than risks, she says. Clearly patients should have a voice in how big a risk they are willing to take, she says, but within limits.

"I think it's safe to say we need a sweet spot, and it hasn't been found. And the FDA has not done a good job of finding that sweet spot," Zuckerman says.

This is by no means a new tension. AIDS activists waged a similar fight decades ago with the FDA.

To get around this cozy relationship between drug companies and patient groups, Zuckerman runs training sessions to teach people to serve as the voice of the patient, independent of advocacy groups. The National Breast Cancer Coalition pioneered this approach years ago.

Sharon Terry also frets about the role of advocates. After her own experience in finding a gene for the rare disease that affects her children, she became CEO of a group called the Genetic Alliance.

"I think advocacy still has a place, but I'm starting to be concerned myself — and again I run one of these groups — about how much that we're becoming 'the man,' and we really need to break down our silos," she says. "We start to be insular; we start to be competitive. And that's not going to serve the people who suffer."

Terry worries that advocates are losing their role as agents of change. The system has come a long way over the past 20 years, but still has plenty of room for improvement.

Copyright 2016 NPR. To see more, visit NPR.
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Rule Change Could Push Hospitals To Tell Patients About Nursing Home Quality

Sun, 11/27/2016 - 7:24am
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November 27, 20167:24 AM ET Heard on Weekend Edition Sunday


Laura Rees (left) and her sister Nancy Fee sit with their father, Joseph Fee, while holding a photo of his late wife, Elizabeth.

Robert Durell for KHN

Hospitals have long been reluctant to share with patients their assessments of which nursing homes are best because of a Medicare requirement that patients' choices can't be restricted.

For years, many hospitals simply have given patients a list of all the skilled nursing facilities near where they live and told them which ones have room for a new patient. Patients have rarely been told which homes have poor quality ratings from Medicare or a history of public health violations, according to researchers and patient advocates.

"Hospitals are not sure enough that it would be seen as appropriate and so they don't want to take the chance that some surveyor will come around to cite them" for violating Medicare's rules, said Nancy Foster, vice president for quality and patient safety at the American Hospital Association.

As a result, patients can unknowingly end up in a nursing home where they suffer bed sores, infections, insufficient staffing or other types of substandard care.

But hospitals' tight-lipped approach to sharing quality information may soon be changed. The Obama administration is rewriting those rules, not just for patients going to nursing homes but also those headed home or to another type of health facility.

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Hospitals will still have to provide patients with all nearby options, but the new rule says hospitals "must assist the patients, their families, or the patient's representative in selecting a post-acute care provider by using and sharing data" about quality that is relevant to a particular patient's needs for recovery. The rule was drafted in October 2015.

The administration hasn't said when it will be finalized. Should it not be enacted before the end of President Obama's term, its fate becomes uncertain. President-elect Donald Trump has pledged not to approve new regulations unless two existing ones are eliminated.

Additional Information: Web Resources | Nursing Home Compare ratings site

The quality requirement might have made a difference for Elizabeth Fee, an 88-year-old San Francisco woman who had been hospitalized for a broken hip. Her hospital, California Pacific Medical Center, told her family about its own nursing home but did not tell them that Medicare had given it one star, its lowest quality rating, Fee's family asserts in court papers.

"I feel we were misled because we believed that Mom was going to a facility that would have given her excellent care," her daughter Laura Rees said. "And what she got was not even close to that, it was like night and day."

A family photo of Elizabeth Fee shortly before her death.

Robert Durell for KHN

At the nursing home, Ms. Fee developed a bowel blockage that went undiagnosed until the morning of the day she died in February 2012. The nursing home and hospital have denied that they provided substandard care and declined to comment. The nursing home closed last year.

Some health systems haven't waited for Medicare's rule change to increase the information they provide patients about prospective nursing homes. In Massachusetts, Partners Healthcare, which runs Massachusetts General and Brigham and Women's hospitals — two teaching hospitals for Harvard University Medical School — endorses 67 nursing homes around the state based on a host of criteria, including state inspections, readmission rates, location and how frequently a doctor or nurse practitioner is at the facility.

Partners believes it doesn't violate Medicare's rules because it gives departing patients a complete list of nursing homes while noting on the list which ones are part of Partner's quality network, said Dr. Chuck Pu, a medical director at Partners. This fall, Partners dropped one of its own nursing homes from its preferred list after it got a poor inspection. "There's no free pass," Pu said.

More careful attention to nursing home quality has been encouraged by existing financial incentives created by the Affordable Care Act that cut payments to hospitals if too many patients are readmitted within a month. "The whole idea of preferred provider networks is really going to escalate in the future," said Brian Fuller, an executive with NaviHealth, a consulting company for hospitals that focuses on patient care after discharge.

Foster, the hospital association executive, said the proposed Medicare rule should make hospitals less wary about giving more detailed guidance. "This signals that it's okay for knowledgeable folks to really engage in that conversation with patients and their families," Foster said.

Kaiser Health News is an editorially independent news service supported by the nonpartisan Kaiser Family Foundation. You can follow Jordan Rau on Twitter: @jordanrau.

Copyright 2016 Kaiser Health News. To see more, visit Kaiser Health News.
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Paul Ryan's Plan to Change Medicare Looks A Lot Like Obamacare

Sat, 11/26/2016 - 1:01pm

House Speaker Paul Ryan, R-Wis., speaks to the media during a briefing on Capitol Hill in September.

Mark Wilson/Getty Images

President-elect Donald Trump and House Speaker Paul Ryan agree that repealing the Affordable Care Act and replacing it with some other health insurance system is a top priority.

But they disagree on whether overhauling Medicare should be part of that plan. Medicare is the government-run health system for people age 65 and older and the disabled.

Trump said little about Medicare during his campaign, other than to promise that he wouldn't cut it.

Ryan, on the other hand, has Medicare in his sights.

"Because of Obamacare, Medicare is going broke," Ryan said in an interview on Fox News on Nov. 10. "So you have to deal with those issues if you're going to repeal and replace Obamacare."

In fact, the opposite appears to be true — Obamacare may actually have extended the life of Medicare.

This year's Medicare trustees report says the program would now be able to pay all its bills through 2028, a full 11 years longer than a 2009 forecast — an improvement Medicare's trustees attribute, in part, to changes in Medicare called for in the Affordable Care Act and other economic factors.

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And the irony of the Ryan Medicare plan, say some health policy analysts, is that it would turn the government program into something that looks very much like the structure created for insurance plans sold under the ACA.

"The way it works is comparable to Obamacare," says physician and conservative policy analyst Avik Roy, founder of the Foundation for Research on Equal Opportunity.

Ryan's plan would set up "Medicare exchanges" where private insurance companies would compete with traditional government-run Medicare for customers. Obamacare exchanges sell only private insurance plans.

People would get "premium support" from the government to pay for their insurance under the Ryan Medicare plan.

The subsidy would be tied to the price of a specific plan offered by an insurer on the exchange, much like the Affordable Care Act subsidy is tied to the second-cheapest "silver" plans.

And the payment would be linked to a recipient's income, so lower-income people would get a bigger subsidy. The subsidy would rise as beneficiaries get sicker, to ensure access to insurance. As with Obamacare, people who choose plans that cost more than the government subsidy would have to pay the balance.

Insurers would have to agree to issue policies to any Medicare beneficiary, to "avoid cherry-picking," and to ensure that "Medicare's sickest and highest-cost beneficiaries receive coverage."

The changes would start in 2024, when people who are now about 57 become Medicare eligible.

Roy agrees with Ryan that Medicare is going broke and that a program structured in this way would save money through "the magic of competition."

"If you have 10 insurers competing for that business, you're going to negotiate a better deal," he said.

Medicare is already a dual public-private program. Most seniors today are enrolled in what's known as traditional Medicare, where the government pays for medical appointments, tests and hospital stays on a fee-for-service basis.

Alongside that program is Medicare Advantage, an insurance plan provided by a private insurer that may offer seniors additional services like dental care at the same price.

The government pays a fixed monthly fee to the insurer for each Medicare Advantage patient, rather than paying for every service separately, as it does in traditional Medicare.

About half of Medicare's new enrollees choose Medicare Advantage plans, says Henry Aaron, a health care economist at the Brookings Institution.

Aaron says Ryan's proposal aims to move almost all seniors into Medicare Advantage-style insurance by making traditional Medicare too expensive for the consumer.

But, he says, there are risks to that approach.

"The real question here is whether the requisite safeguards are in place to ensure that the elderly and people with disabilities would be able to maneuver in such a system," he says.

That's because the health care and health insurance systems are very complex. Doctors move in and out of networks, copayments can vary and plans can change.

Millions of people on Medicare are also eligible for Medicaid, meaning they are poor and vulnerable, Aaron says. And at least 8 million Social Security beneficiaries have been declared financially incompetent and are assigned a representative to manage their money.

"What you've got here is a group of people who are very sick, poor, and often cognitively impaired one way or the other," Aaron says. "Tossing people like that into a health care marketplace and saying, 'Here, go buy some insurance,' is a recipe for problems."

Seniors may feel the same way. Researchers at Brown University last year found that as people get older and sicker, they tend to drop Medicare Advantage and opt for traditional Medicare.

Ryan has been working on his plan to change Medicare for many years. A version of his "premium support" plan was included in several budget proposals he put forth when he was chairman of the House Budget Committee.

The Congressional Budget Office says the proposals would reduce federal spending on Medicare.

At this point it's unclear whether Trump shares Ryan's ambitions to upend the current Medicare system. Trump didn't include Medicare reform on his campaign website. But since his election, "modernize Medicare" has been included on the list of health care priorities on his transition site.

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

Worries About Health Insurance Cross Political Boundaries

Sat, 11/26/2016 - 6:00am

Keely Edgington and her daughter, Lula, pose inside their family-owned restaurant, Julep, in Kansas City, Mo. Lula was diagnosed with a neuroblastoma when she was 9 months old. She's now 16 months old.

Alex Smith / KCUR

This month's election results could have big implications for those who now have insurance because of the Affordable Care Act — either through the exchanges or Medicaid expansion. President-elect Trump and Republicans in Congress have made it clear they want to scrap the law, but it's unclear what may replace it. That gap between repeal and replacement has left many unsure of what will happen with their medical care. We have these reports from around the country from people who could be affected by changes.

Little Lula's Preexisting Condition Is Cancer

If you stop by Julep, a Kansas City, Mo., bar and restaurant, you might catch a glimpse of Lula — the blond, blue-eyed toddler daughter of the owners, Keely Edgington and Beau Williams. They let her inspect the customers a bit before the place gets too busy.

"She likes to go out there and essentially just stare everybody down and smile at them," Edgington says.

She's so smiley you'd never guess how much she's been through in her short life. "She happens to have 4S non-amplified neuroblastoma," Edgington says. It's a cancer in her adrenal gland that doctors discovered when Lula was 9 months old. She needed emergency surgery because of the size and location of the tumor.

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The cost was enormous. Edgington says she stopped looking at bills after they topped $350,000, and that was before the surgery. The vast majority of the cost was paid for through the insurance the family gets through, the federal health insurance marketplace created under the Affordable Care Act. They say, as small business owners, the exchange and subsidies they received because of the law were their only way they could get covered.

Even with coverage, the family was still on the hook for $10,000.

Lula has responded well to the treatment. She's been in remission for a few months, but the family still faces high medical costs. At a minimum, Lula will need intensive, expensive screenings and scans for a few years, then she'll have to be monitored for health conditions that might come up as a result of chemotherapy.

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Since the election, the family says they've been on eggshells waiting to see what will happen with their insurance. They fear possibly losing subsidies. And, before the Affordable Care Act insurance companies could deny coverage to people with preexisting medical conditions like Lula's, and the companies could set lifetime limits on the amount they'd pay for someone's care. Insurers could also take into account an individual's health history, so that someone with a chronic disease might pay many times more than a healthier person.

The family has been thinking about how they might cope with huge medical or insurance costs that might come if Obamacare is repealed. They've pondered a second mortgage, selling their business or even more desperate measures.

"Do we have to move to Canada and hope we get coverage there? That's really extreme, but what wouldn't you do for your child's life?" says Edgington

Trump has said he'd make sure insurance companies couldn't deny coverage to a person with a preexisting condition, but he has provided no formal plan, and much of what happens next is in Congress's hands. Insurance and legal analysts are also unclear about what will happen, although most think the biggest changes probably wouldn't go into effect until at least 2018. — Alex Smith, KCUR, Kansas City, Mo.

Obamacare Choices Are Dwindling For Some

Michael Cluck and his wife Nancy live in Edwardsville, Ill., just outside St. Louis. Cluck, 62, and his wife, Nancy, 58, bought insurance through in 2015, and it, "actually saved us $300 a month, and we were really happy with it," he says.

But two providers, including his own insurer, Coventry, dropped out of the health insurance exchange in his county and two adjacent ones for 2017. There's now just one choice there: Blue Cross Blue Shield of Illinois.

"Premiums were not that bad. Deductibles were not that bad," Cluck says of Blue Cross. "But the problem was, they would not cover any doctors or hospital stays on the Missouri side of the river."

Mike Cluck and his wife, Nancy, of Edwardsville, Ill., were happy with Obamacare until their insurer dropped out.

Durrie Bouscaren / St. Louis Public Radio

Cluck had prostate cancer. He is now free of cancer, but he still needs regular checkups and he fears the cancer may return. It takes him about 30 minutes to drive to oncology appointments now, but the in-network providers Blue Cross Blue Shield of Illinois shows in its directory are farther away.

"That's where the problem came in. Because all of my cancer doctors, and Siteman Cancer Center, are in St. Louis, Mo.," Cluck says.

To Cluck, it's a frustrating display of flaws in the Affordable Care Act.

"This was not supposed to happen," he says. "When they put the Affordable Care Act in place, we were promised we could keep our doctors. We were promised it would cost $2,500 less than what we were currently paying. And nothing's come true."

On Nov. 8, when faced with a choice between Democratic presidential nominee Hillary Clinton and Donald Trump, he voted for the Republican.

"For a lot of reasons, not just Obamacare," he says. But while he hopes that there's a good replacement plan ready for any changes to Obamacare, he's is frustrated by the insurance companies' narrow networks.

"I don't understand why, when the health care companies are recording record profits that they're not staying in the Affordable Care Act. That's the one thing that just boggles my mind."

So, he hopes Trump follows through on his promise to repeal and replace.

"There's a lot of things they need to fix, because there's a lot of people who are reliant upon medical care and health care. I think this should really be fixing, dismantling—however you want to call it—the Affordable Care Act, I think that needs to really be a priority for the new administration." — Durrie Bouscaren, St. Louis Public Radio.

Fears About Losing Insurance Limited Job Options

Leigh Kvetko relies on health insurance she bought through the federal marketplace to pay for the expensive medications that keep her alive after two organ transplantations.

Lauren Silverman / KERA News

Leigh Kvetko, 46, of Dallas, has to take 10 medications twice a day because she's had two organ transplants to replace her pancreas and kidney in 2003. Several of the pills she takes cost nearly $1,000 each per month. For years, Kvetko stuck with a job she hated in large part because it offered health insurance. When the Affordable Care Act passed, insurers could no longer discriminate against people like Kvetko, who have diagnosed health problems, and she and her husband finally felt free.

"It gave me hope and [my husband and I] decided to sell our house, to downsize, and to start our own businesses and start a new chapter of our lives."

In this new chapter, Kvetko is retail manager at a busy Dallas coffee shop. She struts through the store in cowboy boots, her long red hair framing green-speckled eyes. She looks happy — and healthy. But her pancreas is failing, and she's terrified about President-elect Trump's promise to dismantle the Affordable Care Act. She fears it will put health care out of reach for her, and another 1.2 million Texans who rely on subsidized plans. — Lauren Silverman, KERA, Dallas.

These reports come to us as part of a partnership with NPR, local member stations and Kaiser Health News.

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

Legislation That Would Shape FDA And NIH Triggers Lobbying Frenzy

Fri, 11/25/2016 - 6:00am

Lobbyists seeking to influence the 21st Century Cures Act descended on lawmakers.

Susan Walsh/AP

The 21st Century Cures Act now being refined by the lame duck Congress is one of the most-lobbied health care bills in recent history, with nearly three lobbyists working for its passage or defeat for every lawmaker on Capitol Hill.

More than 1,455 lobbyists representing 400 companies, universities and other organizations pushed for or against a House version of a Cures bill this congressional cycle, according to federal disclosure forms compiled by the Center for Responsive Politics.

The legislation would give the Food and Drug Administration new powers to more rapidly approve drugs and medical devices. The measure would also include additional funding for the agency as well as more money for the National Institutes of Health.

Work is now underway on a compromise expected to come up for a vote soon. While final details are still being negotiated, the House version that passed in June 2015 provided the NIH with $1.75 billion in additional annual funding over five years. The bill would keep generics off the market longer for drugs treating rare diseases and speed the drug and device approval process.

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The Cures Act garnered more lobbying activity than all but a few of the more than 11,000 bills proposed in the 114th Congress, an analysis of the CRP data shows. It's also the second most-lobbied health care bill since 2011, surpassed only by the Medicare Access and CHIP Reauthorization Act of 2015, which, among other things, overhauled Medicare payments to health providers.

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Putting a precise price tag on the lobbying is difficult because spending reports don't break down spending by specific measures. The reports show that interested groups spent as much as half a billion dollars from 2015 through the second quarter of 2016 on all lobbying disclosures that included the 21st Century Cures Act.

"In a bill of this importance and consequence, a lot of groups have a lot of interest in every line in that bill, and they're going to put as much pressure as they can on legislators — and maybe some executive branch people as well — to get favorable language in that bill to support their interests," said former Rep. Lee Hamilton, who founded the Indiana University Center on Representative Government after spending more than three decades in the House of Representatives. "The more intense the lobbying, the more money is at stake."

Senate Majority Leader Mitch McConnell identified the legislation as a priority after a 2016 election that has cast doubt on the future of the Affordable Care Act. President-elect Donald Trump has vowed to eliminate "red tape" at the FDA but hasn't specifically commented on the Cures Act.

"Absolutely this has gained a lot of attention on K Street" said Tim LaPira, a political science professor at James Madison University. Every Congress, he said, a few dozen bills spark a "feeding frenzy."

Even so, the bill hasn't spurred as much lobbying as the Affordable Care Act in 2009, which brought out more than 1,200 organizations, according to CRP data.

The Pharmaceutical Researchers and Manufacturers of America, or PhRMA, the main trade group for brand-name drugmakers, applauded the House bill's passage. The group's lobbying reports naming the bill accounted for $24.7 million in spending by the group, which spent $30.3 million overall.

Its spokesperson Allyson Funk said in a statement the trade group "appreciate[s] Congress' continued interest in improving biomedical innovation and accelerating new treatments for patients."

Several nonprofit patient advocacy and research groups have opposed the bill, citing concerns about endangering patients with simplified drug and device approvals.

Beyond the pharmaceutical industry, the bill's supporters include universities, medical schools and groups representing them, as well as patient groups funded by drug and device companies, said Diana Zuckerman of the nonprofit National Center for Health Research, which has not lobbied the bill, but has launched a campaign to convince congress to "fix" it.

"It really is a David and Goliath issue of where the money is," Zuckerman said.

Rep. Fred Upton, a Michigan Republican, (left) and Rep. Diana DeGette, D-Colo., hold thank you signs made by Max Schill, 6, from Williamstown, N.J., after the House of Representatives voted in favor of the 21st Century Cures Act in 2015.

Congressional Quarterly/CQ-Roll Call, Inc.

AbbVie, the maker of Humira, a drug used to treat arthritis, ulcerative colitis and Crohn's disease, reported $7.7 million in lobbying expenditures in disclosures listing the bill as an issue. The company's total lobbying was $9.5 million this cycle.

Hospitals and medical schools, which oppose rising drug costs, supported the bill because the NIH funding could propel grants to medical and research institutions, Zuckerman said.

Johns Hopkins Medicine called enhanced biomedical research funding "long overdue." Spokeswoman Jania Matthews said in an email that the bill would also "provide new tools at the FDA to accelerate the approval of new therapies and medical devices."

The U.S. Chamber of Commerce generally supports the bill and reported $87.1 million in expenditures in disclosure reports that cited the Cures Act, with overall spending of $136.5 million through the second quarter of 2016.

The U.S Oil and Gas Association, with lobbying expenditures of $293,000, lists the Cures Act as a legislative issue. Funding for the bill would partly come from selling crude oil from the U.S. Government's Strategic Petroleum Reserve.

According to the House Committee on Energy and Commerce, money from oil sales would go toward funding NIH "because just as energy reserves are a national resource designed to protect and serve our citizens, so too is an investment in health innovation and research."

The U.S. Oil and Gas Association declined to comment.

Additional lobbyists may be working on the bill under the radar. LaPira said that lax lobbying disclosure requirements mean that some lobbyists may not disclose work on the bill, H.R. 6. That's what he saw when the Affordable Care Act was passed, too.

"The clerk's office is supposed to list the bill number if they know it, but nobody ever checks," he said. "That's another sort of trick of the trade: to hide in plain sight."

The bill is considered a swan song for sponsor Rep. Fred Upton, Republican from Michigan, whose tenure as chair of the House Committee on Energy and Commerce is nearing an end, said Paul Heldman, an analyst at Heldman Simpson Partners, a research firm that provides health policy analysis to investors. Upton garnered broad support from device makers, drug manufacturers, researchers and patient advocacy groups. He's received more than half a million dollars in campaign contributions from pharmaceutical and health product groups in the last two election cycles.

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Follow Sydney Lupkin on Twitter:@slupkin.

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

Give Thanks For Siblings: They Can Make Us Healthier And Happier

Thu, 11/24/2016 - 5:00am
Katherine Streeter for NPR

Somehow we're squeezing 18 people into our apartment for Thanksgiving this year, a year when too many people are worrying about fraught post-election conversations. My relatives, who luckily are all cut from the same political cloth, range in age from my mother, aged 92, to my 32-year-old nephew (my 17-month-old granddaughter's political leanings are still unfolding.)

I love them all, but in a way the one I know best is the middle-aged man across the table whose blue eyes look just like mine: my younger brother Paul.

Paul and I irritated each other when we were kids; I would take bites out of his precisely made sandwiches in just the spot I knew he didn't want me to, and he would hang around the living room telling jokes when he knew I wanted to be alone with the boy on the couch.

But as adults we've always had each other's backs, especially when it comes to dealing with our mother's health crises, which have become more frequent in the past few years. Paul is the first person I want to talk to when there's something that worries me about Mom; I know he'll be worried, too.

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There's probably a biological explanation for the intensity of the sibling bond. Siblings share half their genes, which evolutionary biologists say should be motivation enough for mutual devotion. "I would lay down my life," British biologist J.B.S. Haldane once said, applying the arithmetic of kin selection, "for two brothers or eight cousins." Siblings are a crucial part of a child's development, too, teaching one another socialization skills and the rules of dominance and hierarchy, all part of the eternal struggle for parental resources.

When psychologists study siblings, they usually study children, emphasizing sibling rivalry and the fact that brothers and sisters refine their social maneuvering skills on one another. The adult sibling relationship has only sporadically been the subject of attention. Yet we're tethered to our brothers and sisters as adults far longer than we are as children; our sibling relationships, in fact, are the longest-lasting family ties we have.

Most such relationships are close — two-thirds of people in one large study said a brother or sister was one of their best friends. One thing that can scuttle closeness in adulthood is a parent who played favorites in childhood; this sense of resentment can last a lifetime.

Jill Suitor, a sociologist at Purdue University, and her colleagues polled 274 families with 708 adult children (ages 23 to 68) in 2009 and found that the majority had good feelings toward their siblings. Most didn't remember much favoritism when they were kids, but those who did reported feeling less loved and cared for by their siblings. It didn't matter whether they felt themselves to be the favored or the unfavored child. The simple perception of parental favoritism was enough to undermine their relationship.

That's one thing Paul and I have going for us: We're pretty sure our parents treated us the same when we were growing up. Yet we're very different people. Paul is gregarious while I'm shy, funny while I'm not, a terrific amateur saxophonist while I can't read music or carry a tune. This isn't unusual. In families with more than one child, every sibling seems to get a label in contrast to every other sibling.

So if your kid sister is the queen bee in any social gathering, you might get labeled "the quiet one" even if you're not especially quiet, just quiet in comparison. And if you're a bright child who always gets good grades, you might not get much credit for that if your big brother is a brilliant child with straight A's. There's only room for one "smart one" per family — you'll have to come up with something else. (I was smart, but Paul was smarter; I ended up being the "good one.")

The very presence of siblings in the household can be an education. When a new baby is born, writes psychologist Victor Cicirelli in the 1995 book Sibling Relationships Across the Life Span, "the older sibling gains in social skills in interacting with the younger" and "the younger sibling gains cognitively by imitating the older."

They learn from the friction between them, too, as they fight for their parents' attention. Mild conflict between brothers and sisters teaches them how to interact with peers, co-workers and friends for the rest of their lives.

The benefits can carry into old age. The literature on sibling relationships shows that during middle age and old age, indicators of well-being — mood, health, morale, stress, depression, loneliness, life satisfaction — are tied to how you feel about your brothers and sisters.

In one Swedish study, satisfaction with sibling contact in one's 80s was closely correlated with health and positive mood — more so than was satisfaction with friendships or relationships with adult children. And loneliness was eased for older people in a supportive relationship with their siblings, no matter whether they gave or got support.

That's why it's so sad when things between siblings fall apart. This often happens when aging parents need care or die — old feelings of rivalry, jealousy and grief erupt all over again, masked as petty fights ostensibly over who takes Mom to the doctor or who calls the nursing home about Dad.

Many families get through their parents' illnesses just fine, establishing networks where the workload is divided pretty much equally. So far, Paul and I have done fine, too. But about 40 percent of the time, according to one study, there is a single primary caregiver who feels like she (and it's almost always a she) is not getting any help from her brothers and sisters, which can lead to serious conflict.

And because of the particular intensity of sibling relationships, such conflict cuts to the bone. People grieve for the frayed ties to their siblings as though they've lost a piece of themselves.

Throughout adulthood, the sibling relationship "is powerful and never static," said Jane Mersky Leder, author of The Sibling Connection. Whether we are close to our siblings or distant, she writes, they remain our brothers and sisters — for better or for worse.

So let this all percolate as you sit down to turkey with your sometimes-complicated family. And remember the immortal words of folksinger Loudon Wainwright III, in a song called Thanksgiving. It's about spending the holiday with a brother and a sister he rarely sees but still has intense feelings about:

On this auspicious occasion, this special family dinner

If I argue with a loved one, Lord, please make me the winner.

Science writer Robin Marantz Henig is a contributing writer for The New York Times Magazine and the author of nine books. This is an updated version of an article that we originally published on Nov. 27, 2014.

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

Your Dog Remembers Every Move You Make

Wed, 11/23/2016 - 1:03pm
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November 23, 20161:03 PM ET Heard on Morning Edition

Comparative psychologist Claudia Fugazza and her dog demonstrate the "Do As I Do" method of exploring canine memory.

Mirko Lui/Cell Press

You may not remember what you were doing a few minutes ago. But your dog probably does.

A study of 17 dogs found they could remember and imitate their owners' actions up to an hour later. The results, published Wednesday in Current Biology, suggest that dogs can remember and relive an experience much the way people do.

That's probably not a big surprise to people who own dogs, says Claudia Fugazza, an author of the study and an animal behavior researcher at Eotvos Lorand University in Budapest. Fugazza owns a Czechoslovakian Wolfdog named Velvet.

"Most dog owners at least suspected that dogs can remember events and past experiences," she says.

But demonstrating this ability has been tricky.

Fugazza and her colleagues thought they might be able to test dogs' memory of events using a training method she helped develop called "Do As I Do." It teaches dogs to observe an action performed by their owner, then imitate that action when they hear the command: "Do it."

Do As I Do Training

This video shows episodic-like memory in dogs, using the "Do As I Do" method.

This video shows episodic-like memory in dogs, using the "Do As I Do" method.

Credit: Claudia Fugazza, Akos Pogany, and Adam Milkos / Current Biology 2016

"If you ask a dog to imitate an action that was demonstrated some time ago," Fugazza says, "then it is something like asking, 'Do you remember what your owner did?' "

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In the study, a trained dog would first watch the owner perform some unfamiliar action. In one video the team made, a man strides over to an open umbrella on the floor and taps it with his hand as his dog watches.

Then the dog is led behind a partition that blocks a view of the umbrella. After a minute, the dog is led back out and lies on a mat. Finally, the owner issues the command to imitate: "Do it."

The dog responds by trotting over to the umbrella and tapping it with one paw.

In the study, dogs were consistently able to remember what their owners had done, sometimes up to an hour after the event.

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The most likely explanation is that the dogs were doing something people do all the time, Fugazza says. They were remembering an event by mentally traveling back in time and reliving the experience.

Even so, the team stopped short of concluding that dogs have full-fledged episodic memory.

"Episodic memory is traditionally linked to self-awareness," Fugazza says, "and so far there is no evidence of self awareness in dogs and I think there is no method for testing it."

For a long time, scientists thought episodic memory was unique to people. But over the past decade or so, researchers have found evidence for episodic-like memory in a range of species, including birds, monkeys and rats.

Dogs have been a special challenge, though, says Victoria Templer, a behavioral neuroscientist at Providence College.

"They're so tuned into human cues, which can be a good thing," Templer says. "But it also can be a disadvantage and make it very difficult, because we might be cuing dogs when we're totally unaware of it."

The Budapest team did a good job ensuring that dogs were relying on their own memories without getting any unwitting guidance from their owners, says Templer, who wasn't involved in the study.

She says the finding should be useful to scientists who are trying to understand why episodic memory evolved in people. In other words, how has it helped us survive?

One possibility, Templer says, is that we evolved the ability to relive the past in order to imagine the future.

So when we're going to meet a new person, she says, we may use episodic memories of past encounters to predict how the next one might go.

"If I can imagine that I'm going to interact with some individual and that might be dangerous, I'm not going to want to interact with them," she says.

And that could help make sure the genes that allow episodic memories get passed along to the next generation.

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