The ASH Grassroots Network Lunch, held each year during the ASH Annual Meeting and Exposition, provides a forum for interested members to learn how they can participate in ASH’s advocacy efforts, communicate with Congress and their state and local elected officials, and become effective advocates for hematology. The lunch held as part of the recent 65th ASH Annual Meeting and Exposition in San Diego demonstrated how ASH members and hematology advocates can be involved at the state and local levels to effect change aimed at improving health outcomes.

In 2015, ASH launched a transformative, multifaceted, patient-centric initiative to improve outcomes for individuals with sickle cell disease (SCD), both in the United States and globally. A key component of the initiative involves advocacy in support of issues related to SCD. As part of these efforts, ASH has been committed to advocating for funding for the Centers for Disease Control and Prevention (CDC) Sickle Cell Data Collection program. ASH’s advocacy efforts emphasize the importance of sustainable funding for this program to better understand gaps in SCD care and improve health outcomes for individuals living with SCD.

This year’s Grassroots Network Lunch highlighted the success of advocates in the state of California in building and sustaining the California Sickle Cell Data Collection (SCDC) program. California has been at the forefront of state-based efforts to conduct public health surveillance for SCD since 2010, having implemented statewide, multi-source, longitudinal data collection efforts that include all individuals with this disease. The Society continues to refer to this work — an example of how key data were leveraged to achieve state-level funding in California — as a model for enhancing SCD advocacy on the local, state, and national levels. Presenters shared their stories about how successful advocacy in California helped to build and sustain the California program, which includes grant funding from the CDC SCDC Program, and how they used data from this program to build a network of comprehensive SCD care centers throughout the state to improve health care access.

As part of the 2023 ASH Advocacy Leadership Institute (ALI), 26 ASH members visited nearly 50 congressional offices on Capital Hill on October 17, to urge members of Congress to support individuals living 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 increased funding for the National Institutes of Health (NIH) and the Sickle Cell Data Collection Program at the CDC.

On November 9, physician-scientist Dr. Monica Bertagnolli, MD, began her term as the 17th director of NIH. She is the first surgeon and the second woman to hold the position. President Biden announced his intent to nominate Dr. Bertagnolli in May 2023, and she was confirmed by the U.S. Senate on November 7. She transitioned from her role as the 16th director of the National Cancer Institute (NCI), a position she had held since October 2022.

In taking office, Dr. Bertagnolli emphasized several key priorities: ensuring that clinical trials reflect the diversity of Americans to yield the best results, embracing the rapid expansion of new machine learning-based analytical tools and ensuring that their use serves to advance our understanding of and can improve care for actual patients, restoring trust in science by making it accessible to all communities, and inspiring the next generation of doctors and scientists.

Each year, your representatives and senators make decisions that profoundly affect a wide range of issues affecting hematology research and practice. ASH is the leader in representing the interests of scientists and clinicians working in the field of hematology in Washington, both on Capitol Hill and within federal agencies. ASH plays a vital role in influencing policies that affect researchers, clinicians, and patients by educating lawmakers and government staff on critical issues affecting hematology, including funding for NIH; government activities in SCD research, training, and services; patient access to safe, effective, and affordable prescription drugs and therapies; and issues affecting physician reimbursement.

But it’s not enough for organizations like ASH to advocate for hematology — policy-makers want to hear from constituents, too. ASH needs its members to help advance the issues with a direct impact on hematology research and practice. To help raise awareness and encourage action, visit the ASH Advocacy Center at www.hematology.org/advocacy for the latest updates on ASH’s policy priorities and information about how you can help urge your elected officials to support policies important to you and your patients.