ASH Advocates Count Sickle Cell Legislative Achievements in 2021

ASH advocates have had a remarkable year in 2021 with numerous legislative victories, especially on behalf of individuals living with sickle cell disease (SCD). Advocates have met virtually with lawmakers, made phone calls, and sent nearly a thousand messages and tweets to policymakers on behalf of hematology. The Hematologist recently spoke with Dr. Emily Meier who is a pediatric hematologist at the Indiana Hemophilia and Thrombosis Center in Indianapolis and is currently serving as the vice-chair of the ASH Committee on Government Affairs to learn more about the Society's legislative accomplishments.

“This year has seen significant momentum in regard to ASH's advocacy efforts, and we’re starting to see results from all of the hard work that members have put into advocacy,” said Dr. Meier.

Legislation to improve care for individuals with SCD. “We’ve seen a number of successes related to our advocacy efforts related to sickle cell disease,” explained Dr. Meier, “which is a major part of ASH's overall sickle cell disease initiative.”

This year, one of ASH's main legislative initiatives focused on working with congressional SCD champions to draft bipartisan legislation authorizing the creation of a Medicaid demonstration project. The goal of the demonstration is to improve access to high-quality outpatient care for individuals living with SCD through the creation of a new care delivery and payment model. Recognizing that the COVID-19 crisis has exacerbated the already fragile system of care for many people with SCD, the legislation seeks to ensure the coordination of and access to clinical and mental health, as well as ancillary and support services to address the physical, mental, and social needs of individuals with SCD. This includes coordination of and access to services provided by subspecialists including hematologists to treat the many complications of SCD. It also focuses on access to supportive clinical services, including vision and dental care, mental health services, access to transportation, and community and social support services.

As this issue of The Hematologist went to press, ASH was working closely with members of Congress in both the House and Senate, advocating for the bill's introduction this fall.

Continued efforts to educate congressional offices about SCD. ASH also continued efforts to educate members of Congress and their staff about other issues related to SCD. This fall, ASH hosted a congressional briefing in conjunction with the Sickle Cell Disease Association of America and the Association of Maternal and Child Health Programs to educate lawmakers on maternal mortality issues related to SCD. Currently, pregnant women with SCD are 10 times more likely to die in childbirth than women of color without SCD. The disparity is compounded by the fact that the maternal mortality rate for all non-Hispanic Black women is already more than double the U.S. maternal mortality rate. The briefing presented an overview about the current state of reproductive health care for women with SCD, a personal story of a mother's pregnancy journey with the disease, and proposed policy strategies to improve outcomes. A recording of this informational briefing will be viewable on the ASH website.

Support for increased public health program funding. This year has also seen continued bipartisan support within Congress to increase funding for federal public health programs. Over the summer, the House-passed fiscal year (FY) 2022 Labor, Health and Human Services, Education, and Related Agencies appropriations bill included significant proposed increases in funding for both the Sickle Cell Data Collection program at the Centers for Disease Control and Prevention (CDC) and the Sickle Cell Disease Treatment Demonstration Program within the Health Resources and Services Administration.

The final FY 2022 spending levels have yet to be signed into law, but the inclusion of the provisions in the House's proposed spending levels marks a significant achievement that is a direct result of advocacy by ASH and the SCD community.

“Chief among the successes this year has been achieving a congressional appropriation for the CDC's Sickle Cell Data Collection program,” said Dr. Meier. ”We were excited that Congress provided funding for the first time for this program in FY 2021 and are even more excited by Congress's continued support for the program and the prospect of a significant funding increase in FY 2022.”

Get involved. “All of the legislative achievements this year could not have been possible without ASH members taking the time to write, call, and meet with their lawmakers,” explained Dr. Meier. “This year proves that you can have an impact.”

It is important for all ASH members to engage in advocacy to remind elected officials about the importance of hematology and the needs of hematology researchers, clinicians, and patients. All ASH members can participate in the Society's advocacy efforts by joining the ASH Grassroots Network to receive regular updates and information about how to contact their Members of Congress. Grassroots Network members also receive the monthly Advocacy Update and periodic Action Alerts encouraging members to contact their legislators whenever legislation affecting hematology is introduced or when a key vote is approaching on Capitol Hill. Additionally, staff in the ASH Government Relations and Practice Department are available to help set up virtual meetings with your legislator's office and provide the information needed to be an effective advocate, including fact sheets and relevant talking points. For more information, visit www.hematology.org/advocacy.