Advocacy Blogs

October 2023



2023 ASH Advocacy Leadership Institute Participants Visit Capitol Hill in Support of SCD and Public Health Funding 


As part of the 2023 ASH Advocacy Leadership Institute (ALI) on Tuesday, October 17, twenty-six ASH members visited nearly 50 congressional offices on Capitol Hill to urge Members of Congress to support individuals living with sickle cell disease (SCD) by cosponsoring the Sickle Cell Disease Comprehensive Care Act (H.R. 1672/S. 996). ASH members also urged Members of Congress to finalize fiscal year (FY) 2024 appropriations and provide the National Institutes of Health (NIH) with a funding level of at least $47.8 billion and at least $10 million for the Sickle Cell Data Collection Program at the Centers for Disease Control and Prevention (CDC).  To learn more about the Society’s advocacy efforts and take action on issues impacting public health and hematology, visit the ASH Advocacy Center.


ASH and FDA Host Workshop on Regulatory Science in Hematology 

In early October, ASH and FDA cohosted the ASH-FDA Collaboration: A Workshop on Regulatory Science in Hematology at ASH Headquarters. This two-day meeting included a select group of ASH members who joined to gain a better understanding of the FDA and allow for an exchange on regulatory issues in hematology drug development. ASH was pleased to welcome the Workshop Co-Chairs, Drs. Grzegorz Nowakowski (Chair, ASH Subcommittee on Clinical Trials, Mayo Clinic) and Richard Pazdur (Director, FDA Oncology Center of Excellence) and over 50 FDA staff to educate participants on topics such as clinical and translational research, trial design, and drug development. For more details on this Workshop, visit the ASH Website.


ASH Presents Request for Duffy Phenotype ICD-10-CM Codes

ASH submitted a proposal to the National Center for Health Statistics’ ICD-10 Coordination and Maintenance Committee requesting the creation of new Z codes that would be used to indicate Duffy phenotype status in medical documentation and claims submissions. The application is a part of a broader, ASH-led Duffy Status Health Equity Project to ensure that the people who have lower absolute neutrophil count (ANC) due to Duffy phenotype are accurately documented within the medical record and are not considered to have “abnormal” ANC levels. In conjunction with that application, ASH member Maureen M. Achebe, MD recently presented to the ICD-10-CM Coordination and Maintenance Committee on the need for the new codes as well the significance of accurate documentation of Duffy status. ASH hopes that a decision on the new Z code request will be made by 2024. 


ASH, CDC & Other Partners Publish NEW Fact Sheets for Women with Sickle Cell Disease 

ASH in collaboration with the Centers for Disease Control and Prevention, Foundation for Women & Girls with Blood Disorders, and Sickle Cell Reproductive Health Education Directive (SC RED) released new fact sheets on preconception care, prenatal care, and postpartum care for women living with SCD. Share these resources with your colleagues and network to help women with SCD stay healthy before, during, and after pregnancy.


Resources for the Ongoing Drug Shortages 

ASH has been in contact with the U.S. Food and Drug Administration (FDA) and other stakeholders to ensure continued access to safe and effective hematologic drugs. Up-to-date information on recent hematologic drug shortages and mitigation strategies can be found on ASH’s Hematologic Drug Shortage Information webpage.  The Society encourages members to join in our advocacy to ensure your elected officials hear from you about this critical topic and the impact it is having on your patients, by visiting the ASH Advocacy Center. 


ASH Joins the National Academy of Medicine in the Change Maker Campaign

ASH reaffirmed the Society’s commitment to advancing health workforce well-being on the 1-year anniversary of the National Plan for Health Workforce Well-Being, by becoming a change maker with the National Academy of Medicine (NAM). The NAM’s Change Maker Campaign will provide a dynamic mechanism to facilitate information sharing and collaboration across ongoing initiatives, document their impact, and amplify effective solutions to common challenges. To learn more about the campaign and to explore the work already started, visit the Clinician Well-Being Collaborative site.


Government Shutdown Averted after House and Senate Pass 45-Day Funding Bill

On Saturday, September 30, Congress came together to secure a last-minute deal to continue government funding for 45 days and avoid a government shutdown, bucking the overwhelming consensus that a shutdown was inevitable. The “clean” stopgap measure — known as a continuing resolution — will keep government agencies, including the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and other federal public health agencies, running at current levels through November 17, the deadline by which it needs to pass another bill to avoid a government shutdown.

The lack of a final FY 2024 budget leaves NIH and other public health programs in limbo and the prospect of a flat or reduced final budget may delay progress. Until a final deal is reached on the FY 2024 budget, grassroots support is critical to show your elected officials the importance of sustained and predictable NIH funding. Simply visit the ASH Advocacy Center, enter your contact information, and click “Submit Email” to quickly and easily send a message to your elected officials. 


NIH Announces Plans for Operating Under Continuing Resolution (CR)

On October 4, the NIH announced plans for its operations under the continuing resolution (CR) that federal agencies and programs are funded under through November 17, 2023. As has been the practice during previous CRs of FYs 2006-2023, NIH Institutes and/or Centers may choose to issue non-competing research grant awards at a level lower than stated on the most recent Notice of Award. The current salary cap levels will remain unchanged until the Executive Salary Levels are updated, which typically occurs in January 2024.


Senate HELP Committee Holds Hearing on Nomination of Dr. Monica Bertagnolli to be Director of the NIH 

Yesterday, the Senate Health Education, Labor, and Pensions (HELP) Committee held a hearing on the nomination of Dr. Monica Bertagnolli to be Director of the National Institutes of Health (NIH). Dr. Bertagnolli, who has been serving as Director of the National Cancer Institute (NCI) since October 2022, was nominated to be NIH Director by President Biden in May. A hearing on her nomination had been held up by HELP Committee Chairman Senator Bernie Sanders (I-VT) over concerns related to drug pricing and how Dr. Bertagnolli would work to help lower the price of prescription drugs. Although the HELP Committee hearing marks a crucial step in Dr. Bertagnolli’s confirmation as NIH Director, the committee must still vote to advance the nomination to the full Senate, which then also must vote on the nomination. 


Sickle Cell Action Plan Issued by CMS

September was Sickle Cell Awareness Month, and in recognition, the Centers for Medicare & Medicaid Services (CMS) released its Sickle Cell Disease Action Plan. The action plan was drafted by CMS to outline its efforts to eliminate barriers, reduce health disparities, and improve health outcomes for individuals with sickle cell disease (SCD). The action plan is comprised of four fundamental pillars that are essential to understanding and caring for those living with SCD. The four pillars include:

  • Expanding coverage and access;
  • Improving quality and the continuum of care;
  • Advancing equity and engagement; and
  • Examining data and analytics.

Within each of these areas, CMS outlined how the agency intends to improve care for beneficiaries who have SCD such as improving access to chronic pain management services and medications, promoting access to innovative therapies, improving coverage of an allogenic stem cell transplants and a host of other policies aimed to help the SCD community.  Along with the action plan, the agency released other helpful information including a SCD infographic, a video on SCD, and information on understanding pain management in SCD. 


CMS Releases Medicaid Assurance of Transportation Coverage Guide

In late September, the Centers for Medicare & Medicaid Services released the Medicaid Transportation Coverage Guide, which outlines transportation coverage policy for state Medicaid plans and provides information as to how Medicaid plans should implement transportation policies and procedures. ASH is particularly interested in this policy to support transportation for patients with SCD. The agency encourages states to use the guide to assure that every Medicaid beneficiary has access to transportation when needed to receive covered medical care. The intent of “assurance of transportation” does not require Medicaid plans to “pay for a ride” but to ensure there is access to needed transportation. The policies outlined in the guide support access to care in an equitable fashion to improve health outcomes and to assure access to needed treatments and care, regardless of “race, ethnicity, disability, sex (including sexual orientation and gender identity), socioeconomic status, geography, preferred language, and other factors that can affect access to care and health outcomes."