JDRF Advocacy in the Age of Trumpcare

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With Congress due to leave for August recess at the end of this week, those following Republicans’ efforts to replace Obamacare with Trumpcare are expecting one more push. In Monday’s New York Times, the opinion columnist Paul Krugman wrote that even though many view Republicans’ efforts to replace health care as dead, this week is a particularly dangerous time, with people distracted by the burgeoning Russia scandal. “Many people I know [are] worried that we may see a repeat of what happened in the spring: with the media spotlight shining elsewhere, the usual suspects may ram a horrible bill through. And the House would quickly pass whatever the Senate comes up with. So this is actually a moment of great risk.”

A couple of weeks ago, just before the Senate bill seemingly fell apart, I went to a conference called Partnering for Cures (organized by Faster Cures, a center at the Milken Institute), where people from all sides of the medical community—from patients to researchers to biotech, pharmaceutical, and insurance executives to philanthropists to people from the FDA and NIH—come together to work on achieving faster cures for disease. There were a range of panels and roundtables on how to speed up research—including ideas on sharing “scruffy” data among researchers, patients, and centers; and a workshop on making clinical trials more accessible. But underlying all the discussion of medicine and how to improve it is the basic issue that the health care system is shifting under the country’s feet. We don’t know how it will change, but we know it will change.

So while I was at the conference, I was glad to have the chance to sit down with Cynthia Rice, JDRF’s senior vice president of advocacy and policy, and to hear her speak on a panel about the federal policy landscape. JDRF, as Moira McCarthy wrote about earlier this year is a powerful presence on Capitol Hill, lobbying for those with type 1 diabetes, and by extension for all those with preexisting conditions. Rice pointed out how hundreds of JDRF advocates have been meeting with their members of Congress, and talking with them about their priorities for health care reform: maintaining the protection of people with preexisting conditions; continuing to allow people to stay on their parents’ health plans until the age of 26; keeping insurance companies from setting annual and/or lifetime limits for receiving benefits; and closing the “donut hole” in Medicare coverage (where a prescription drug benefit plan will only cover a certain amount per year, after which patients are fully responsible for costs up until they have reached their mandated yearly limits). Rice pointed out that JDRF is part of a broader coalition of patient organizations who have been meeting with congressmen—both in Washington and in their home states—and lobbying hard against changes in health care that would hurt those with chronic diseases.

JDRF’s work on health care is part of a robust agenda in Washington, DC, including educating the FDA about technologies like encapsulation and beta cell replacement; pushing companies to use other measures aside from A1C to evaluate T1D outcomes, and pushing for insurance coverage for artificial pancreas technology. In the panel on federal policy, Rice talked about JDRF’s roots as an organization whose goal is to push the federal government to use its muscle, funding and otherwise, to try to cure T1D; and she emphasized the continued importance of the federal government in the search for treatments and cures. “My organization was founded by parents of children with type one diabetes who wanted a cure for their children. And partnering for cures is an important theme for this disease…. We need the government to play a partnership role with patient organizations, with researchers, and with the private sector,” Rice said. She used the example of the artificial pancreas to show how JDRF works with the federal government over the long term, in a strategic way. She described how getting the FDA to approve the first artificial pancreas system, which happened last year, was part of a long process that started more than a decade ago. “We want multiple versions of [an automated insulin dosing system] on the market so in 2006 we started working with the FDA to define the pathway to minimize the uncertainty, and that resulted in guidance in 2012 which ultimately resulted in therapy in 2016. So it can take time, but I think you need to look ahead and say, ‘What’s the uncertainty you’re trying to diminish, and how can we get there?’”

Another panelist, Robert Califf, a commissioner of the FDA under Obama, commented that in that role he saw how important it was for a given disease to have strong advocacy, as T1D has with JDRF. “It was painful to me to see diseases where there wasn’t effective advocacy. Let’s face it, if you have effective advocacy, not only are you more likely to get therapies developed, you’re more likely to get them paid for,” he said. But in the current health care landscape Califf was even more worried about disparities of a different kind: the widening disparities in health care outcomes between the rich and the poor—a gap that he believes will only widen if Republicans succeed in passing their health care law. “My personal view is, if I were teaching a class in how to create disparities, I would say, take that bill, and that is the formula to create the greatest disparities in this country you could imagine…. It is not a good time to be a poor person in America.” But Califf closed his thoughts on the health care bill on a note of restrained optimism, with the opinion that the two parties do have some common ground on health reform—if only they’d be willing to seek it out. “If the two parties were locked in a room and couldn’t come out until they agreed, I think there’s enough between the two points of view that they could come out with something pretty good. So maybe we should just go down and surround the Capitol.” Even if only metaphorically, surrounding the Capitol is something JDRF has been doing since it was founded, almost fifty years ago. And the need for its passionate advocacy is only increasing.

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