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Award Winners In the Public Eye

The 2016 recpient of the Research!America Edwin C. Whitehead Award for Research Advocacy, Rep. Tom Cole (R-OK) was named the chair of the powerful House Appropriations Committee on Tuesday. We look forward to working with him in his new role as our nation faces important choices: will we make the critically needed investments in health and scientific R&D that will enable us to maintain our global leadership? Or will we underinvest, as we did in FY24 appropriations legislation, which, for example, cut NSF funding by 8.5% while our global competitor China boosted its S&T spending by 10%? You can see our statement on Chairman Cole’s new role here.

On The Hill: After a two-week recess and with a new House Appropriations Committee chair, the work on FY25 appropriations now begins in earnest. Use this editable email to make the case to your representatives in Congress to include research funding among their appropriations priorities. (Note: this email template addresses NIH funding, but you can adapt it to advocate for other research and public health priorities.)

Proposed Changes to Medicare Data Access: Several alliance members have expressed concerns about changes CMS has proposed to data access policies that, while intended to improve data security, would also increase fees for access to data used in health care research. In response, CMS has expanded its request for information (RFI) to include feedback on these fees. See our comments and consider submitting your own by the May 15 deadline. Learn more and view submission instructions.

While data security is essential, there is also evidence of patients’ willingness to share data (with privacy protections in place) to accelerate research. Research!America commissioned a public opinion survey in October 2023 in partnership with the Association of Clinical Research Organizations revealing that 70% of Americans are willing to share their health data so researchers can better understand diseases and develop new ways to prevent, treat, and cure them. 

Eclipse Causes Economic Boom: The excitement surrounding the solar eclipse earlier this week produced an economic windfall for many U.S. communities, especially those in the path of totality. One report indicated that eclipse-related spending in Texas alone would amount to $1.4 billion. That sum is more than enough to wipe out all the spending reductions in the NIH’s and NSF’s FY24 budgets combined. The crowds that flocked to watch were evidence of the public’s fascination with the eclipse and will hopefully inspire the next generation of scientists. This is just the most recent reason to ensure we do not close off opportunities to aspiring scientists by underinvesting in research.  

Lending Her Voice to Science: Speaking of previous award winners, it’s great to see that Renée Fleming, renowned opera singer and 2020 recipient of Research!America’s Isadore Rosenfeld Award for Impact on Public Opinion, is continuing to engage the public on science and medicine in her newly released book, “Music and Mind: Harnessing the Arts for Health and Wellness.” Hear from her on the Conversations on Health Care podcast.

Elevating Women’s Health Research: Despite progress made in the past 30 years, women remain underrepresented and underresearched in health studies. On April 25, at noon ET, please make time to (virtually) sit in on an important alliance discussion with Katie Schubert, President and CEO of the Society for Women’s Health Research, and Lori Frank, President of Women’s Health Access Matters, who will discuss ongoing challenges facing women’s health researchers and chart a hopeful path forward.

Fireside Chat on NIMHD’s Progress: The National Institute on Minority Health and Health Disparities (NIMHD), is hosting a special fireside chat with former HHS Secretary Louis W. Sullivan, MD, on Wednesday, April 22, from 1:30 to 2:30 p.m. ET to discuss the mission and work of this important institute and to highlight Dr. Sullivan’s record of improving scientific workforce diversity and reducing health disparities among underserved communities. Sullivan is the 2019 recipient of the Research!America John Edward Porter Legacy Award and the sponsor of Research!America’s Dr. Louis Sullivan science policy fellowship. The event is part of NIMHD’s commemoration of National Minority Health Month. Learn more about this event and how you can view the videocast.

Bringing Attention to a Neglected Tropical Disease: In advance of this Sunday’s World Chagas Disease Day, we have published a new primer on this neglected tropical disease. Chagas disease is endemic to the Latin American and Caribbean region, where it imposes the highest burden, but is spreading across continents, including North America. With 6-7 million infections globally and significant mortality rates, it poses a substantial public health threat globally and, increasingly, in the U.S. 

Annual Meeting Next Week: We look forward to seeing our members next week at our annual meeting, to be held virtually on Thursday, April 18, 1–2:15 p.m. ET. Highlights include remarks from Dr. Monica Bertagnolli, Director of the NIH; a conversation with Sen. Shelley Moore Capito (R-WV) and Dr. Mary Hendrix, President of Shepherd University and Research!America Board Member; and a spotlight on advocacy with remarks from representatives of the Friedreich’s Ataxia Research Alliance. Members will also hear reports from Research!America leadership and vote on the election of new directors. If your organization is a Research!America member, check your inboxes for registration information or reach out to Samantha Miller for more details.