A Weekly Advocacy Message from Mary Woolley: Channeling the Vice President

Mary Woolley

Dear Research Advocate,
 
On Tuesday, I had the great honor of attending the bill signing for the 21st Century Cures Act (21stCC). It was particularly meaningful that this bill crossed the finish line during Vice President Biden’s tenure. His determination to deliver other families from the cancer tragedy experienced by his own lent a special strength to our collective efforts over a protracted period of congressional debate. If we continue to channel the Vice President’s level of commitment and determination, we can ensure that achieving faster medical progress remains at the forefront of national priorities.
 
As you know (but it never hurts to reaffirm), it is important, but not sufficient, to fight for increased federal funding and policy refinements for NIH and FDA. To achieve progress at the maximum pace, which is to say at the level of scientific opportunity,  we must commit to further empowering all three components -- discovery, development, and delivery -- as conducted in both public and private sectors. And we must fight for public health and science writ large. Better health is an all-in effort.
 
It is all too easy to focus on our own tree while ignoring the forest in which it will thrive or perish. Channeling Vice President Biden, I think the patient community is the most effective within our ecosystem at reminding us of both what is at stake, and why we must work together. I’ve been thinking a lot about the need to stand together and help create an environment for civil discourse and sound policymaking. Three salient issues: climate change, drug pricing and public health.
 
Regarding climate change: Earlier this week, the Trump transition team asked the Department of Energy (DoE) to identify all individuals involved in DoE-associated climate change work. DoE indicated that it would not comply and the transition team backed off. In a similar vein, several Republican House leaders sent a letter to OMB asking the agency to release a statutorily-required report cataloguing all federal funding for climate change programs. Ostensibly they took this action solely because the report is overdue. 
 
Maybe the President-elect simply wants to ensure that climate change activities are coordinated, and perhaps those members of Congress sent a public letter rather than making a private phone call because that’s just the way they do things. I’ve got to be honest, though, it doesn’t feel like that. It feels like a political or ideological offensive, targeting and attempting to intimidate scientists who are working to understand, document and address climate change.
 
There are legitimate differences of opinion regarding how best to respond to climate change. But intimidation tactics do not serve the public’s interest. As a community and as a nation, we need to create the space for productive dialogue about climate science and scientific discovery writ large. That means treating threats to any scientific discipline as a threat to every scientific discipline. And it means working together and with the new Administration and Congress to find common ground. We can be alarmed and build distance or be alarmed and build bridges. I’m for bridges.
 
In terms of drug pricing, the same thinking holds. A recent op-ed in USA Today posited that Democrats and President-elect Trump may be able to find common ground when it comes to prescription drug prices. Bad actions by bad actors should be called out and sanctioned, to be sure. But drug pricing seems to be carrying the weight of the health care cost issue as a whole, in part because it’s easier to focus on a single target than a multi-pronged problem, and in part because policy and politics are bleeding into one another.
 
I am more than ever convinced that it is counterproductive to treat drug pricing as a stand alone issue, ignoring the intertwined nuances and realities of third party payment, discounting, investment risk and other relevant variables, as well as the impact of other cost drivers. Nor should we ignore the potential for R&D investment to dramatically reduce health spending. Think of a vaccine that prevents a disabling illness, an Alzheimer’s drug that delays onset or arrests progression. Everyone who has skin in this game must look across the research, health and health care system and work together to optimize health. Everyone must listen to patients; reflect on our own families’ hopes, expectations and experiences.
 
Finally, among my short list of issues subject to politicization is the misrepresentation and neglect of funding for prevention and public health. The Cures bill tapped the Public Health and Prevention Fund, which we did not support. The repeal of the Affordable Care Act would make this fund’s future highly uncertain. It shouldn’t be that way; every stakeholder who cares about better health and/or smart policymaking should fight to maintain, and indeed grow that fund. Faster public health progress is faster medical progress: prevention is the fastest path to a healthier population, and fortifying our public health infrastructure will have wide-reaching and lasting impact on our nation’s health and security. Research!America has signed on to this letter, led by Trust for America’s Health, urging Congress not to repeal -- indeed to expand -- the Prevention and Public Health Fund. We hope your organizations will consider signing on
  

Sincerely,

Mary Woolley

 

Add comment

Plain text

  • No HTML tags allowed.
  • Adds node titles to internal links found in content (as HTML "title" attribute).
  • Web page addresses and e-mail addresses turn into links automatically.
  • Lines and paragraphs break automatically.
CAPTCHA
This question is for testing whether or not you are a human visitor and to prevent automated spam submissions.
The capabilities are enormous, a little bit of research can pay off quite a bit in the long run.
Paul D’ Addario, retinitis pigmentosa patient