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Politics Medical Research? Congress Cheers. Medical Care? Congress Brawls.

21:35  06 january  2018
21:35  06 january  2018 Source:   nytimes.com

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a man wearing a suit and tie: At a recent hearing, Senator Lamar Alexander of Tennessee pressed scientists to explain exactly how gene editing technology could lead to new treatments for several diseases.  © Tom Brenner/The New York Times At a recent hearing, Senator Lamar Alexander of Tennessee pressed scientists to explain exactly how gene editing technology could lead to new treatments for several diseases. 

WASHINGTON — They cannot agree on subsidies for low-income people under the Affordable Care Act or even how to extend funding for the broadly popular Children’s Health Insurance Program — two issues requiring urgent attention as Congress returns to work.

But a more exotic corner of the medical world has drawn rapturous agreement among Republicans and Democrats: the development of new treatments and cures through taxpayer-funded biomedical research.

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For the third straight year, lawmakers are planning to increase the budget of the National Institutes of Health by $2 billion. In the process, they have summarily rejected cuts proposed by President Trump.

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The push for additional funding reflects a fascination among legislators with advances in fields like molecular biology, genetics and regenerative medicine, even as they wage bitter battles over just how large a role the government should play in financing health care and providing coverage.

At a recent hearing, Senators Lamar Alexander of Tennessee and Tim Scott of South Carolina, both Republicans, and Maggie Hassan of New Hampshire, a Democrat, pressed scientists to explain exactly how gene editing technology could lead to new treatments for sickle cell anemia, H.I.V., cystic fibrosis, Alzheimer’s and other diseases.

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Ms. Hassan wanted to know the relative merits of different techniques for editing DNA and RNA — what she called “this incredible cutting-edge technology.”

Why is medical research so much less contentious than fundamental issues like health insurance coverage?

Anthony J. Mazzaschi, a lobbyist at the national organization representing schools of public health, said “the charisma of the cure, the hope and promise of curing disease, seems to excite members of Congress,” including some in their 70s and 80s who are “facing the prospect of disease and disability head-on.”

And that prospect is bipartisan. “Disease doesn’t impact just Republicans or Democrats,” said Representative Diana DeGette, Democrat of Colorado. “It impacts everybody.”

While the search for new treatments and cures is advancing at breakneck speed, ideas about how to help patients pay for them lag far behind. And Republicans who sometimes laud the N.I.H. as the National Institutes of Hope also support dismantling the Affordable Care Act, which could limit access to the new treatments.

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“If we are spending billions to incentivize the development of new drugs, I think we also have to ensure that patients can afford those drugs,” said Representative Jan Schakowsky, Democrat of Illinois. “It is almost cruel to find a cure and then have it priced so high that a patient can’t afford it.”

The challenges facing patients and policymakers were illustrated this past week when a Philadelphia company said it would charge $850,000 for a new gene therapy to treat a rare inherited form of blindness. (The company, Spark Therapeutics, said it would pay rebates to certain insurers if the medicine, given in a one-time injection, did not work as promised.)

Members of Congress have friends, relatives and constituents who suffer from cancer, Alzheimer’s and other diseases, but lawmakers may have less interaction with people who are uninsured and unable to afford doctor visits or prescription drugs.

“Sadly,” said R. Alta Charo, a professor of law and bioethics at the University of Wisconsin at Madison, “the cynic in me says it’s because of the prevalence of selfishness. We all want to know there’s something out there that will cure us if we need it, but many of us are quite reluctant to pay for somebody else to get cured when they need it.”

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Sherri J. Bale, a geneticist who worked at the N.I.H. for 16 years before founding GeneDx, a genetic testing company in Gaithersburg, Md., said: “Gene therapy has fabulous promise. We will soon be able to treat and even cure people with genetic diseases where we previously had nothing at all to offer them. But where are they supposed to get the money to pay for these treatments — thousands of dollars a month?”

“What good is the research if all you do is treat people in a clinical trial and publish a few papers?” Ms. Bale asked. “I’m afraid that patients will be left in the lurch.”

With huge bipartisan majorities, Congress in 2016 passed the 21st Century Cures Act, to speed the discovery of cures and the approval of new drugs and medical devices. Senator Mitch McConnell of Kentucky, the majority leader, called it “the most significant legislation” passed by Congress in 2015-16.

Nine-year-old Max Schill of Williamstown, N.J., who has a rare genetic condition known as Noonan syndrome, which causes heart defects and growth delays, was the public face of patients who could benefit from that legislation.

“Max bravely visited nearly every senator’s office with handmade drawings asking for support,” said Senator Robert Menendez, Democrat of New Jersey.

But while a few children with rare diseases can sometimes elicit an outpouring of concern, millions of Americans continue to lack health insurance.

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A month after President Barack Obama signed the medical cures bill in December 2016, surrounded by members of both parties, Republicans in Congress ramped up their campaign to demolish the Affordable Care Act — a law that Mr. McConnell once described as “the single worst piece of legislation that has been passed in the last half-century.”

Republicans in Congress and the Trump administration appear uncertain whether they want to repeal what remains of the Affordable Care Act or stabilize insurance marketplaces created by the law. They cannot agree among themselves, much less with Democrats, over the future direction of federal health policy.

Funds for the Children’s Health Insurance Program, which serves nearly nine million children, and for community health centers, which serve more than 24 million patients, are in limbo because of inaction by Congress.

The partisan divide was evident last week when Mr. Trump proposed to relax certain health insurance rules. Senator Alexander and other Republicans hailed the move as a way to reduce costs for 11 million small-business employees and self-employed people.

But the House Democratic leader, Nancy Pelosi of California, said the president’s proposal was a recipe for “junk health insurance” that would strip consumers of vital protections provided by the Affordable Care Act.

Bipartisan Senate efforts to stabilize insurance markets face long odds in the House.

Mr. Alexander, the chairman of the Senate health committee, and Senator Patty Murray of Washington, the senior Democrat on the panel, drafted a bill to continue paying cost-sharing subsidies to insurance companies on behalf of low-income people.

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But their bill met fierce resistance from conservative House Republicans, who said it would prop up the health law and bail out insurers.

By contrast, the appeal of biomedical research often appears to transcend politics. In a decision applauded by scientists, Mr. Trump decided to retain the director of the National Institutes of Health, Dr. Francis S. Collins, who led the government’s 15-year effort to map the human genome and inspires lawmakers with his infectious enthusiasm for medical research.

When Dr. Collins and Scott Gottlieb, the commissioner of the Food and Drug Administration, appeared at House and Senate hearings to assess progress under the Cures Act, one theme ran through questions from members of both parties: What more can we do to help you?

The N.I.H. has an annual budget of roughly $32 billion, and over 80 percent of it goes out in grants to more than 300,000 scientists at universities, medical schools and other research institutions that can lobby local members of Congress.

Dr. Matthew H. Porteus, a pediatrician and stem cell biologist at Stanford University who testified at the Senate hearing on gene editing, said he was impressed with the level of congressional interest and surprised at the lack of partisanship.

“The senators’ questions were spoken as if they were experts,” he said. “If you didn’t know what party each senator belonged to, you’d have no idea, based on the questions they asked.”

At the same time, Dr. Porteus said, “it’s really disappointing” that Congress has been unable to find money for a long-term extension of the Children’s Health Insurance Program.

“If you can’t provide the best possible care for people today, and CHIP is an essential part of that for millions of children,” Dr. Porteus said, “you’ll be in a poor position to provide advanced care to people in the future.”

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