ASH Advocacy Spotlight: Jerome Seid, MD

In truth, my hematology advocacy began as a chance opportunity. As a general hematologist/oncologist in private community practice, most of my patients fell into the solid tumor category. It was my involvement with the Michigan Society of Hematology and Oncology (MSHO) that propelled me forward in my advocacy efforts. One area that I identified in my practice was the lack of parity in oral chemotherapy insurance coverage for so many of my patients. Involvement in MSHO gave me a platform from which I was able to express myself pertaining to hematologic and oncologic issues affecting my patients, my practice, and myself. I have spent the better part of 10 years trying to help Michigan become the 44th state with legislation to address this issue.

Additionally, it was through the MSHO-ASH relationship and regular MSHO postings that I became aware of the ASH Congressional Fellowship and took a chance. My work during that fellowship — researching, drafting, and helping to introduce legislation aimed at creating a Center for Medicare and Medicaid Innovation (CMMI) demonstration project to change the payment structure for transfusion-dependent Medicare hospice beneficiaries — stemmed directly from the ASH position paper on this issue published in 2018-2019.

ASH has provided an avenue for scientific, clinical, and legislative information to help me identify areas of relevance to me, my patients, and my practice. Identifying legislation in need of congressional support is facilitated by ASH. Equally important, is that the Society serves as a resource to help identify (and connect) colleagues with similar interests and legislators who would benefit from education on issues impacting public health and hematology.

The ASH Congressional Fellowship was and is an immersive experience that helped to educate me on the federal legislative process. This opportunity taught me so much about the important need to build and maintain relationships. My goal could not have been achieved without understanding and utilizing this information. Relationships are vital for anyone engaged in advocacy: legislators, patients, and pharmaceutical stakeholders, for example. My fellowship experience led to an opportunity to serve on the ASH Committee on Government Affairs (CGA), which has added another dimension to my advocacy efforts. This committee has helped me remain focused on the issues germane to hematology patients and practices. My CGA involvement also allows me to gauge the interest of other ASH members and set the stage for the collaboration and coalition building conducive to successful advocacy.

In this internet-dominated culture, so many of us are dependent on email, texts, and social media for our communications, and for some of us, this is exclusive. In my experience and opinion, these are inadequate substitutes for the establishment of a “real” relationship for the effective use of our voices. Advocating at various levels or domains so often involves convincing others to assist in the “heavy lifting” to help create “adjacent” advocacy.

Additionally, go to the state legislative website to see what bills are circulating that might impact you and contact the sponsors to make your position known. Attend in-district coffee hours and town hall meetings. Join your state professional society too. Most issues we deal with are local or regional, and these societies will likely have access to opportunities to interact, some of which they might even host.

Testifying before a legislative committee can be frightening and intimidating. I cannot speak for others, but the imposter syndrome is alive and thriving even in many of the most seasoned health care professionals and can stop many of us in our tracks when it comes to providing oral testimony. The prospect of being asked questions about issues on which I am not proficient is daunting and makes me uneasy. It does get easier each time I provide testimony; yet that curveball from a legislator who wants to go down a tangential issue requires caution when attempting to answer. For example, when testifying on oral chemotherapy coverage parity (I have done this three times on this same issue in separate legislative sessions), I am often pulled into the issue of drug pricing by a committee member or asked questions about insurance plans that are not relevant to the legislation. It takes a little practice and preparation to regain composure and steer back onto my pathway. It is always helpful to acknowledge your lack of expertise, validate the importance of the question, and offer to research and get back with an answer for that questioner; that helps build the relationship.

I believe that getting and remaining involved in advocacy is an antidote to the apathy, outrage, and frustration that have helped to fuel the “burnout” that many of us are experiencing — a phrase which I think does not capture the true essence of the problem but seems to affect so many people in disparate fields. Before taking part in the ASH Congressional Fellowship, I was considering leaving practice, in part due to “burnout.” That year-long respite and focused effort was rejuvenating. Taking a year off to do something like that is not the only way, however. I have experienced my own advocacy efforts as empowering, giving me a chance to effectively express my opinions, suggestions, and observations with the intent of creating change in non-clinical ways.

If any ASH members want to learn more about the legislative process or the basics of advocacy in an environment of like-minded individuals, the ASH Advocacy Leadership Institute (ALI) is a great way to begin. Joining forces with other ASH members, chaperoned by an ASH staffer, makes lobbying on Capitol Hill a simple way to gain the skills needed to address legislators. And for those who are of the age, there is always Schoolhouse Rock’s “I’m Just a Bill!”

All ASH members can participate in the Society’s advocacy efforts by joining the Grassroots Network, which provides regular updates on how to contact their members of Congress. Additionally, ASH staff are available to assist in setting up meetings with congressional staff. For more information on all the ways to become involved in ASH’s advocacy efforts, visit hematology.org/advocacy.

On June 3, President Joe Biden signed into law the Fiscal Responsibility Act of 2023. The Senate approved the legislation by a vote of 63-36 on June 1, following its passage in the House by a vote of 314-117 on May 31. The bill avoids a financial default for the country by suspending the borrowing limit through January 1, 2025, while imposing cuts to future federal spending. The legislation was drafted following a deal brokered between President Biden and House Speaker Kevin McCarthy (R-CA), which was announced on May 28.

On June 14, former ASH President Alexis A. Thompson, MD, MPH (Children’s Hospital of Philadelphia), testified at a House Energy & Commerce Subcommittee on Health hearing on legislative proposals to provide access to care and support research for patients with rare diseases. Among the proposals discussed at the hearing was the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023 (H.R. 3884), sponsored by Representatives Michael Burgess (R-TX), Buddy Carter (R-GA), and Danny Davis (D-IL).

On June 16, President Biden named Dr. Mandy Cohen, former state health secretary in North Carolina, the new director of the Centers for Disease Control and Prevention (CDC). Dr. Cohen is an internal medicine physician who has served in top positions in both state and federal government and in the private sector.

Drug shortages are reaching an all-time high in the United States, especially in hematologic care. ASH continues to update the Hematologic Drug Shortage Information webpage to keep members apprised of shortages and actively works with Congress, federal agencies, and other stakeholders to ensure continued access to safe and effective hematologic drugs.

To help raise awareness and encourage action, visit the ASH Advocacy Center at hematology.org/advocacy and contact your elected officials.