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Advocacy Blogs

January 2024

2023 ASH Advocacy and Policy Highlights

As we begin 2024, we reflect on the many advocacy and policy initiatives that were important to hematology and the ASH membership over the past year. Learn more about: 

ASH and Other Organizations Urge Congress to Finalize Government Funding as Passage of Additional CR Expected

More than a quarter way into the current fiscal year (FY), 2024 spending bills have stalled in Congress, forcing the passage of multiple continuing resolutions (CRs) to temporarily extend funding for federal programs and agencies and allow the government to remain open. The most recent CR, which was enacted in mid-November, extended government funding to January 19 for some federal agencies and programs, including the Food and Drug Administration (FDA). Funding for most other public health and research programs – including the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) – was extended through February 2. Following an agreement on topline funding levels reached in early January, congressional leaders are expected to act this week on a new two-tiered stopgap plan that will keep the government funded into March. The latest funding patch would keep federal agencies running on two different timeframes, like the current stopgap. Funding for some federal agencies, including the FDA, would expire March 1, while funding for others – including NIH and CDC – would run through March 8.

ASH recently joined more than 1,000 organizations in sending a letter urging congressional leaders to complete the FY 2024 appropriations process, adopt the bipartisan Senate funding framework as a starting point for final negotiations, and provide stable funding for nondefense discretionary (NDD) programs, including NIH and CDC.

Until a final FY 2024 deal is reached, grassroots support is critical to show your elected officials the importance of sustained and predictable public health funding. Visit the ASH Advocacy Center, enter your contact information, and click “Submit Email” to quickly and easily send a message to your elected officials about the importance of NIH, CDC, and other federal health programs.

ASH Submits Comments to HHS on Information Blocking

In November, the Department of Health and Human Services (HHS) released a proposed rule, in coordination with the Centers for Medicare & Medicaid (CMS), the Office of the National Coordinator (ONC), and the Office of the Inspector General (OIG), to implement disincentives for health care providers who are found to have committed information blocking. While ASH remains committed to transparency in health systems, the Society believes in thoughtful information sharing that strengthens the patient-physician relationship. ASH submitted comments on the proposed rule encouraging CMS to consider a delay in the delivery of high-risk health information and offered the Society’s expertise in hematology to establish best practices in delivering high-risk health information for hematologic conditions. ASH also recommended several adjustments to the proposed disincentives, with the goal of better supporting physicians in information sharing and preventing unintentional penalties.

ASH and Collaborative Partners Submit Comment Letter on CMS Proposed Decision Memo for Allogeneic Hematopoietic Stem Cell Transplantation for Myelodysplastic Syndromes

On January 5, ASH, along with the American Society for Transplantation and Cellular Therapy, the Blood and Marrow Transplant Clinical Trials Network, the Center for International Blood and Marrow Transplantation, and the National Marrow Donor Program, submitted a comment letter expressing support, while also offering edits for consideration on the Centers for Medicare & Medicaid Services’ (CMS) proposed coverage decision memo for Allogeneic Hematopoietic Stem Cell Transplantation (HSCT) for Myelodysplastic Syndromes (MDS).

ASH and the other organizations supported the proposed removal of the 'coverage with evidence development' requirement for HSCT, but also expressed concern regarding two specific proposed policies within the decision memo. First, coverage for HSCT, if the proposal is finalized, would exclude cord blood as a donor source. Second, the decision memo proposes to use the International Prognostic Scoring System-Revised (IPSS-R) to classify patients as eligible for HSCT. Our comments provided a rationale as to why cord blood should not be an excluded donor source and provided information on alternative risk scoring methods.

The Society is hopeful that CMS will consider and implement the edits as proposed by ASH and the other partners. The final coverage requirements are expected to be released on March 6.

ASH Sends Letter to CMS Responding to the SCD Action Plan

Late last year, the Centers for Medicare & Medicaid Services (CMS) released a Sickle Cell Disease (SCD) Action Plan and hosted a series of roundtable discussions with SCD stakeholders. During one of the stakeholder calls, ASH advocated for comprehensive care for individuals living with SCD; the Society followed up by submitting a letter to CMS responding to the SCD Action Plan.

ASH’s letter lauded CMS for its commitment to SCD and attention to eliminating barriers, reducing health disparities, and improving health outcomes for individuals with SCD. The Society also noted opportunities to expand the SCD Action Plan to include comprehensive care and ensure individuals with SCD have access to the full range of treatment options currently available.

ASH Comments on Medicare Programs CY 2025 Technical and Policy Changes Proposed Rule

The Centers for Medicare & Medicaid Services (CMS) released a Medicare Programs- Contract Year 2025 Policy and Technical Changes proposed rule for several programs. ASH commented on two provisions in this proposed rule about prior authorization: the Annual Health Equity Analysis of Utilization Management (UM) Policies and Procedures, and the Biosimilar Biological Product Maintenance Changes and Timing of Substitutions. In its letter, ASH expressed support for CMS’ actions to improve health equity considerations in UM policies and procedures and support for reducing the administrative burden of prescription drug modifications and substitutions by allowing biosimilars to be treated as maintenance changes.

ASH Comments on the White House Initiative on Women’s Health Research

In late December, ASH sent comments to the White House on the newly launched Initiative on Women’s Health Research. ASH applauded the Biden Administration's commitment to women’s health research and highlighted a few points of interest for further research at the intersection of hematology and maternal health including reproductive health, iron deficiency, hemorrhage, increased risk of venous thromboembolism, and sickle cell disease. ASH also encouraged greater inclusion of women in clinical trials and urged the White House to coordinate across pertinent federal agencies. ASH looks forward to further engagement on this initiative.

ASH Joins Letter to Congressional Leaders Supporting Federal Tobacco Oversight Programs

ASH recently joined nearly 80 organizations in sending a letter urging congressional leaders to maintain funding for federal tobacco oversight programs. The letter specifically calls on leaders to finalize fiscal year (FY) 2024 spending bills and ensure that the Food and Drug Administration (FDA) retains its full authority to oversee tobacco products and that the Centers for Disease Control and Prevention (CDC) receives necessary resources to protect children from tobacco products and reduce tobacco-related disease.