June 26, 2024 | Washington D.C. --
The WHIC had a serious set of discussions revolving around the IP confiscation proposal, the U.S Chamber of Commerce’s efforts to oppose this regulatory overreach, the importance of the Bilirakis/Tonko Parkinson’s legislation, legislative updates from the Office of the Speaker of the House, and a series of updates from innovators and policy leaders.
A very special thank you to Rep. Gus Bilirakis (R-FL) who spoke to us via video (due to a death in his family) and sent a lead health staff member, Chris Jones, in his stead to answer questions regarding efforts around neurodegenerative diseases, and other issues spurring new federal efforts such as those important to the medical device industry. Additionally, if the GOP maintains its House majority in November, and if there are “musical chairs” with full committee and subcommittee chairmanships, you can expect Rep. Bilirakis to be a leading contender for the chairmanship considering his years of healthcare experience and seniority. Also thank you to the Office of the Speaker for again joining us and for senior health advisor, Drew Keyes, for his comprehensive discussion of key priorities for the House Majority.
On behalf of Parkinson’s patients worldwide, we heard from advocacy leaders Drew Hatter, Michael J Fox Foundation, and Meri-Margaret Deoudes, Parkinson’s Foundation. They highlighted the recent and ongoing work on the bipartisan legislation endorsed by Rep. Gus BIlirakis (R-FL) and Jennfer Wexton (D-VA): H.R.2365 Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinson’s. The bill overwhelmingly passed the House and Senate and is awaiting the President’s signature.
Important innovators from across the spectrum were present and participating in the discussions including Eyenuk, US Anesthesia Partners, Rush Hospital, Lupen, NeuroSteer, DermaSensor, American Tool and Mold, Lean6Health, and innovators represented by our partners at Goodwin, Leavitt Partners, Nahigian Strategies, and JK Strategies (JKS).
Thank you to Jacquelin Maycumber, Congressional candidate, 7th District, Washington State (retiring incumbent Cathy McMorris Rodgers) for your commitment to innovations in health and patient care, deonstrated by her background in biochemistry, and previous work in healthcare with her state representative and healthcare committee.
Jack Kalavritinos distributed the initial draft of the WHIC Policy Pillars and looks forward to receiving additional feedback so that they can be widely distributed to policy leaders on both sides of the aisle.
Thanks to the U.S. Chamber of Commerce’s Brad Watts for his hospitality and for highlighting the work of Business Alliance to Stop Innovation Confiscation (BASIC) and our Council’s active participation. This WHIC meeting felt particularly notable as we met in the Executive Board room at the Chamber and then our members were able to socialize with a range of invited guests from representatives, from the biopharmaceutical world to US Chamber government affairs staff.
We are Looking forward to a very busy Summer and Fall. Upcoming activity includes the sending of our Policy Pillars to the presidential campaigns and Hill leaders, the unveiling of new public affairs initiatives, meetings in September, October, November and a special December Holiday Party for a wide range of WHIC partners and members of the healthcare policy and media worlds. To take advantage of these opportunities - please contact Jack Kalavritinos or Jenni Mushynski about how you can be part of this exclusive group.
-- Jack Kalavritinos
ADDITIONAL RESOURCES
As a follow-up to the previous forum on rare disease policy, and in advance of the September meeting with the FDA in attendance, JKS senior consultant Mia Heck provided the following:
Overview of Policies Impacting Innovators and Patients
The Rare Disease Priority Review Voucher Program (PRV) will expire September 30, 2024 if it does not receive Congressional Reauthorization.
H.R. 7384 Creating Hope Reauthorization Act of 2024 has 43 co-sponsors, and E&C Subcommittee
National Institutes of Health (NIH) reforms proposed and active in committees including shifts in funding for various stages of research. Recently, the Labor-HHS FY 25 Appropriations bill text was released, outlining discretionary allocations four (4) percent below the FY24 enacted amounts. That level of cut – at an agency that is accustomed to annual increases – will force its own unofficial realignment internally at the NIH, squeezing research and grant dollars, affecting publicly funded lifesaving research and innovation.
Webinar Opportunity Regarding Recent SCOTUS Decision
Our partner Goodwin law firm held a very timely webinar about Friday's Supreme Court decision – an important decision overshadowed by post-debate commentary. Thus, our friend and Goodwin partner, Matt Wetzel, is arranging for our partners and allies to receive a special briefing on the impact on lifesciences and the regulatory environment for innovators, providers and patients. WHIC partners will receive an email with additional information.
SAVE THE DATE
Upcoming meetings (see email for agenda details and/or any changes):
September 18
October 16
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