Mary Woolley's Weekly Letter: Live from the 2021 National Forum!
Dear Research Advocate,
Wow! If you were among the many who joined us yesterday for the first day of Research!America’s 2021 National Health Research Forum, we’re confident you found the conversations as relevant and refreshing as we did.
Our theme this year is Straight Talk: Fighting Health Threats Faster. Together, we are challenging the status quo, exploring strategies for out-innovating health threats, and learning from new voices.
Below is just a sample of the many comments that stood out for me from Day One:
“Fighting disease is not a red issue or a blue issue. It is a human issue.” – First Lady Jill Biden, EdD
What role should the U.S. play globally in the fight against AMR? “One word: leadership.” – Stefano Bertuzzi, PhD, MPH
"I think the pandemic has changed how healthcare will be delivered in the future. Health services research can help us ensure that the changes lead to improved quality, safety, equity, and value.” – David Meyers, MD
“We are doing a horrible job of nurturing our own homegrown talent... We're essentially playing neighborhood soccer right now... but we are in an international competition for science." – Marcia McNutt, PhD
"The moment of opportunity is the next four months. If we can't get this legislation [USICA] through Congress now, it won't happen. The moment is now. – Sudip Parikh, PhD
“I am a secret DARPA nerd, I think DARPA is one of the most interesting governmental entities that exists. And so when I got the opportunity to talk...about ARPA-H, I thought ‘yes, this is so cool!’” – Hallie Jackson
“If we don't bring a DARPA-like culture to ARPA-H then we shouldn’t be doing it… The point here is to do something very different." – Eric Lander, PhD
Two of the most stirring segments of the day were from Christina Hartman, who discussed the long and arduous journey she and her husband took to find a diagnosis for their daughter, and from Gunnar Esiason, cystic fibrosis patient advocate. Their stories underscore the compelling human cost of disease that has no diagnosis, much less cure or treatment — and then the difference finding a solution can make.
Speaking of the moment she accepted that her infant daughter, Charlotte, was struggling with a serious, as yet unidentified disorder, Christina said: ”when it hit me, the realization I’d been hiding from for months, I burst into tears.” Gunnar: “It's amazing what three pills have done for my life...It's given me an MBA, it's gotten me married. I'm expecting a child."
The powerful conversations continue! Tune in today, Tuesday, September 14, for conversations with CDC Director Rochelle Walensky and former FDA Commissioner Scott Gottlieb; discover new models for meeting chronic disease challenges; hear advice from NIAID Director Tony Fauci for early career investigators; learn the craft of op-ed writing from a former USA Today editor; join our networking sessions; and more!
Then, on Wednesday, join us for timely discussions about clinical trial diversity and conquering cancer; help think through how to measure success in efforts to advance DEI; learn from the FDA’s Peter Marks how the agency will weigh the need for COVID-19 booster shots; hear from Olympian Laurie Hernandez and Representative Patrick Kennedy about their personal mental health journeys; and much more.
Special thanks to our Lead Sponsor, Pfizer, and to all our supporters who are making the 2021 National Health Research Forum possible.
And just in case we haven’t made it clear enough: we want you to join us! Registration is free of charge.
On Capitol Hill. Our advocacy work is continuing during the Forum. Now is a busy time on Capitol Hill as Congress approaches the September 30 end-of-fiscal year deadline and Democrats in both houses work on a major legislative package based on the president’s Build Back Better plan. Components of this package are spread across many committees, including the House Energy & Commerce Committee, which marked up a part of its portion of the legislation yesterday.
E&C is one of the committees charged with fashioning legislative proposals that bear on prescription drug pricing. We sent a letter to E&C leadership, as well as to leaders of the Senate Finance and House Ways & Means Committees, urging them to secure sufficient data and analyses to dispassionately assess the potential ramifications of the proposed drug pricing changes. Patients — and we are all patients — cannot afford policy changes that will influence the nature and pace of medical progress — and the cost of healthcare — in ways that are, at this point, unclear.
Urgency. Faster, science and technology-driven progress is called for, there can be no doubt. The first day of our Forum spotlighted exciting paths forward. Join us today and tomorrow for Day Two and Three to hear more ideas, more discussion, and more inspiration!
Stay well, stay safe, and stay connected.