Through its federal and congressional advocacy initiatives, the American Society of Hematology (ASH) strives to empower and educate researchers, clinicians, and patients to engage with lawmakers and government officials in an effort to make a difference toward the policy issues that most affect hematologists and the field. In 2024 alone, more than 120 congressional visits were conducted by ASH member advocates, and more than 1,000 messages were sent from ASH members to Capitol Hill, all advocating for critical policy issues relating to research funding, physician payment, and sickle cell disease (SCD) care, among others.
As the year brings a new presidential administration and a new Congress, ASH remains committed to advocating for these and all issues that affect hematologists and their patients. Read on to learn more about the current statuses of some of ASH’s top advocacy priorities and how you can get involved and make a difference.
Research Funding for Hematologists
Fiscal year (FY) 2024 saw a decrease of $378 million (0.8%) in funding to the National Institutes of Health (NIH) compared with FY 2023, as the agency was allocated a total base funding of $47.081 billion through an appropriations bill from the Departments of Labor, Health and Human Services, and Education (Labor-HHS). For other agencies and programs, funding stayed the same in FY 2024 compared with FY 2023, including the Advanced Research Projects Agency for Health (ARPA-H), which received $1.5 billion, and the Centers for Disease Control, which received $9.2 billion in funding, including $6 million for the Sickle Cell Data Collection Program.
For FY 2025, former President Joe Biden’s proposed budget, issued last March, included $48.3 billion in discretionary funding for the NIH base budget, $1.5 billion in mandatory funding for Cancer Moonshot, $2.7 billion in mandatory funding for biodefense research, and $1.5 billion for ARPA-H. At that time, ASH joined nearly 400 organizations and institutions through the Ad Hoc Group for Medical Research to recommend an appropriation of at least $51.3 billion for NIH’s foundational work in FY 2025, which would allow NIH’s base budget to keep pace with biomedical inflation and allow for meaningful growth of roughly 5%. However, the House Appropriations Committee FY 2025 Labor-HHS appropriations bill maintained overall funding for NIH at the FY 2024 level, while the Senate Appropriations Committee Labor-HHS bill provided a net increase in NIH funding of $1.770 billion over the FY 2024 amount. Neither chamber was able to advance the bills to floor consideration, and in late September and then again in December, Congress issued a continuing resolution (CR) to avert a government shutdown and maintain government funding through March 14, 2025. Following this, NIH announced that no new research awards would be issued until an FY 2025 appropriations bill was finalized and signed into law.
Physician Payment Reform
In 2024, Congress began deliberations about long-term reforms to physician payment systems. In the spring, the Senate Finance Committee held a hearing on “Bolstering Chronic Care through Medicare Physician Payment,” during which concerns were raised about the Medicare physician payment structure contributing to a worsening physician shortage and challenges with patient access. Witnesses and committee members discussed the need for reforms in physician payment, quality programs, care coordination, prior authorization, telehealth, and other payment-related reforms. Shortly after, Sen. Ron Wyden (D-OR) and Sen. Mike Crapo (R-ID) released a white paper outlining these concerns, to which ASH responded, emphasizing the need for annual inflation-based updates to payments and elevating the challenges cognitive specialties face in the valuation of their work.
Additionally, Sen. Sheldon Whitehouse (D-RI) and Sen. Bill Cassidy (R-LA) introduced a request for information (RFI) in support of their bipartisan Pay PCPs Act, which aims to better support and improve pay for high-quality primary care providers. The bill encourages the Centers for Medicare & Medicaid Services (CMS) to adopt a hybrid payment model for primary care providers, reduce beneficiary cost sharing for primary care services, and establish a time-limited technical advisory committee to advise CMS on how to more accurately value Medicare Physician Fee Schedule (MPFS) services. ASH provided feedback and recommendations through meetings with Senate staff and submitted comments on the RFI.
This past fall, ASH, the American Medical Association, and other medical specialty organizations came together to further advocate for physician payment reform. Through a series of letters, ASH joined the coalition in urging members of Congress to support legislation to prevent a 2.8% payment cut and provide physicians with a payment update that reflects inflationary pressures before January 1, 2025.
Despite these efforts, the MPFS conversion factor was ultimately reduced by 2.83% to $32.3465 compared with $33.2875 in 2024, which went into effect January 1. Congress had initially considered a provision to mitigate the cut by 2.5%, but this was stripped from the end-of-year package due to objections from President Donald Trump. Some members of Congress, including GOP Doctors Caucus member Rep. Greg Murphy (R-NC), have since called for Congress to pass a retroactive physician reimbursement fix when they address government funding this month.
Sickle Cell Disease Comprehensive Care Act
First drafted and introduced in 2021, the revised Sickle Cell Disease Comprehensive Care Act (H.R. 7432) was introduced in the House of Representatives in February 2024 by former Rep. Michael Burgess (R-TX) and Rep. Danny Davis (D-IL). The bipartisan bill seeks to improve access to comprehensive, high-quality outpatient care for individuals with SCD. It would allow states to establish Medicaid Health Home Programs with SCD as the sole qualifying condition for eligibility, thus ensuring that patients have access to essential clinical, mental health, ancillary, and support services. In September, a Senate version (S. 5097) was introduced by Sen. Cory Booker (D-NJ) and Sen. Tim Scott (R-SC).
Throughout 2024, ASH worked to build congressional support for the Sickle Cell Disease Comprehensive Care Act, as ASH members from the Committees on Government Affairs and Practice and the Advocacy Leadership Institute met with more than 120 congressional offices to encourage support and co-sponsorship. ASH also led efforts to gain broader backing, including coordinating a letter from 85 organizations to the House Energy and Commerce Committee in June, urging them to mark up the bill. This past November, ASH joined with more than 90 organizations in sending a letter to congressional leaders that called for the inclusion of the bill in any year-end legislative package that they considered. Now that there is a new Congress, the Sickle Cell Disease Comprehensive Care Act will need to be reintroduced in both the House of Representatives and the Senate.
Next Steps: How ASH Members Can Get Involved
ASH will continue to monitor and advocate for the issues that are critical to hematology and the practice of medicine as the new presidential administration and Congress progress. One such issue that ASH will keep a close eye on this year is possible reforms to NIH, including a proposal released in the last Congress that suggested a reduction from 27 institutes and centers to 15 and limits on the number of grants a single investigator can have, among other potential ideas. Furthermore, with a new administration, a new NIH director could also recommend changes to the NIH, which is likely.
ASH members are encouraged to join the ASH Grassroots Network to receive regular updates on the Society’s advocacy work and the policy issues affecting hematologists. Members of the Grassroots Network also receive periodic action alerts and guidance on how to contact members of Congress to advocate for the key policy issues affecting the field. For more information and to sign up, visit hematology.org/advocacy/get-involved.
As the new administration issues executive orders, lawmakers must hear from constituents about their impact on hematology. ASH wants to hear from you about how executive orders have affected hematology patients and research. Click here to share your story.
