Divided on health care, Congress backs medical research
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.
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.
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, HIV, cystic fibrosis, Alzheimer’s, and other diseases.
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, a Colorado Democrat. “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 NIH as the National Institutes of Hope also support dismantling the Affordable Care Act, which could limit access to the new treatments.
“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, an Illinois Democrat. “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 might 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.”
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, a Kentucky Republican and the majority leader, called it “the most significant legislation” passed by Congress in 2015-2016.
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, a New Jersey Democrat.
But while a few children with rare diseases can sometimes elicit an outpouring of concern, millions of Americans continue to lack health insurance.
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 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 direction of federal health policy.