A Weekly Advocacy Message from Mary Woolley: Let me tell you a story…

Dear Research Advocate:

Appropriately, it was Jack Valenti, prominent former president of the Motion Pictures Association of America, who recommended to politicians that every speech should include the six words: “let me tell you a story.” Stories have impact in ways reports do not. Eddie Redmayne as Stephen Hawking, a theoretical physicist diagnosed with a form of the motor-neuron disease amyotrophic lateral sclerosis (ALS), in The Theory of Everything, and Julianne Moore as Dr. Alice Howland, a fictional linguistics professor diagnosed with early onset Alzheimer’s, in Still Alice, were Academy Award winners last Sunday evening. These films grappled with devastating diagnoses for the patient and their loved ones, putting a face to the 30,000 Americans living with ALS and the more than 5 million Americans living with Alzheimer’s.

A less high profile but impressively high impact group of advocates for rare disease research traveled to D.C. from around the nation to tell their own – personal and nonfictional – stories about the toll visited on patients and families by a wide range of diseases that also call out for more research. Having spoken with the group early yesterday morning before they fanned out on Capitol Hill, I can attest to how well-rehearsed and determined they were to make their case. I recalled that it is patients and their families who have, historically, so often made the breakthrough difference in advocacy for research, going back to the key role of the March of Dimes in focusing the nation on the imperative of putting research to work to defeat polio, through the paradigm shifters called AIDS activists and women’s health research advocates, and many more. Now is the time for more stories to be told on Capitol Hill, at this moment of opportunity for galvanizing Congress’ increasing interest into action.

And Congress is definitely demonstrating bipartisan interest in medical progress. Just this week we saw the introduction of bipartisan legislation intended to limit barriers in speeding medical innovations to patients. Reps. Leonard Lance (R-NJ-07) and Anna Eshoo (D-CA-18) reintroduced the FDA Safety Over Sequestration (SOS) Act which proposes to exempt Food and Drug Administration (FDA) user fees from sequestration. In another example of members of Congress banding together, on a bipartisan basis, to spur action that moves the needle for research, Reps. David McKinley (R-WV-01), Susan Davis (D-CA-53), Peter King (R-NY-02) and Andre Carson (D-IN-07) are circulating a bipartisan letter of support for the National Institutes of Health (NIH) from House Members to the House Appropriations Committee. I encourage you to urge your representatives to sign on the House bipartisan NIH letter.

Research!America’s newest annual poll data summary, America Speaks, Vol. 15 – released this week – shows that in choosing to take action for research, Congress will be in sync with their constituents, large majorities of whom in both parties and among independents say that Congress should act in the first 100 days of the legislative session to assure the discovery, development, and delivery of treatment and cures for diseases. Other timely findings include solid support for making the R&D tax credit permanent, even if doing so results in less revenue to the U.S. Treasury. And, 70 percent of Americans agree basic scientific research that advances the frontiers of knowledge, even if it brings no immediate benefits, is necessary and should be supported by the federal government. To see more of our findings, I invite you to review the poll data summary here.

This week the National Alliance for Hispanic Health, a Research!America member, released a provocative story with the Genes, Culture and Health report. It details the consequences of under-representation of major racial and ethnic populations in genetic studies, creating a “genomic divide” and a huge barrier to realizing the promise of personalized (also known as ‘precision’) medicine. Only 4 percent of genome-wide association studies include people of non-European descent; this is not for lack of interest or willingness by people of non-European descent. Our past polling about clinical trials, showed that strong majorities – 75 percent of Hispanics, 72 percent of African-Americans, 71 percent of non-Hispanic whites and 65 percent of Asians – say they would likely participate in a clinical trial if recommended by a doctor. Unfortunately, only about 20 percent of all respondents – regardless of descent – say they have heard about clinical trials from their doctor or other health care provider.

A reminder: we are only 13 days away from Research!America’s annual meeting and Advocacy Awards dinner. Join us on Wednesday, March 11 for the annual meeting (free to members; a modest charge for guests; click here) and our annual awards event (click here to reserve your seat).

Sincerely,

Mary Woolley

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