The ASH Advocacy Leadership Institute (ALI), started in 2011, is a two-day program that gives ASH members the opportunity to learn about advocacy, health policy, and the legislative process affecting hematology research and practice, as well as become engaged in the Society’s advocacy activities. The first day of the institute teaches participants about the legislative process and health policy including a training on how to be an effective advocate. On the second day, participants travel to Capitol Hill to meet with their Representatives and Senators to apply what they learned on the previous day. Here, some of the current and previous ALI participants share a bit about their experience as well as some lessons learned.
Christina Barriteau, MD, MPH (2018)
Dr. Barriteau is a pediatric hematology/oncology fellow in the Department of Pediatrics at Ann & Robert H. Lurie Children’s Hospital in Chicago.
Dr. Barriteau applied to participate in ALI, moved by her interest in the intersection of SCD and health policy. “I have witnessed firsthand both devastating disease complications and opportunities to improve health equity,” she commented. Dr. Barriteau recognized that curative options for sickle cell disease (SCD) hold great promise, but disparities in research funding threaten to stall progress. She added that funding for SCD, which primarily affects minorities, pales in comparison to funding for other chronic diseases. “Health policy gives clinicians a valuable opportunity to take action that will make a difference and improve health outcomes. I wanted to increase awareness of SCD and advocate for legislation to increase funding for NIH and the Centers for Disease Control and Prevention.” Dr. Barriteau explained that funding for both agencies has the potential to positively affect patients by improving data collection and furthering the development of therapeutic and curative options. Through ALI, her goal is to strengthen her ability to effectively advocate about key issues for the SCD patient population. “I wanted to learn effective communication strategies that translate from the hospital setting to the political arena. I also wanted to partner with other hematologists who were interested in advocacy,” she said.
Regarding lessons learned through ALI, Dr. Barriteau pointed out that the training goes “beyond the Hill and can be applied to everyday work.” She highlighted opportunities to advocate on behalf of patients in hospitals, the community, and statewide, and said that meeting with members of Congress inspired her to continue advocating back home. “ALI galvanized us to continue this important work. It is crucial to have a seat at the table when health policies are crafted so that we can ensure that the downstream effects enhance our ability to provide the very base care to our patients,” she concluded.
Laahn Foster, MD (2018)
Dr. Foster is an assistant professor in the Hematology/ Oncology Division at the Emily Couric Clinical Cancer Center of the University of Virginia in Charlottesville.
Dr. Foster applied to ALI because she believes that on its current trajectory and form, our health care system “will soon eclipse our ability to pay for it.” She is interested in issues around patient access, physician reimbursement and high drug costs. “I wanted to take an active part in health care policy to better human health care, and ALI has afforded me this opportunity,” she added.
The lessons learned at ALI reminded Dr. Foster to not lose sight of the bigger picture. “Through my experience, I now have a greater understanding of how individuals can affect change on a broad scale,” she said. “It is my sincere belief that the physician community will be the genesis of viable policy options and drive the needed solutions to our health care system.”
Ellen Fraint, MD (2019)
Dr. Fraint is a second-year fellow in pediatric hematology-oncology at Children’s Hospital at Montefiore in New York, and has career interests in pediatric bone marrow transplantation.
Dr. Fraint described being drawn to advocacy over time and a steadily increasing awareness of how important our voices are in the society we share as well as in our government. “We cannot expect our politicians to know what we care about and what we need if we do not make our voices heard,” she said. “This is particularly important as doctors, caring for at-risk populations who need resources and research money to advance our current therapies and chances for cure.”
After an October 2019 visit to Capitol Hill, Dr. Fraint recalled excitement upon discovering the attentiveness and availability of congresspeople. “It showed me that if you make an effort, you really do have a chance to make your point heard, especially when advocating on behalf of an important organization like ASH,” she said.
A common theme among many ALI participants over the years is a strong desire to not leave the totality of the experience behind once they make the trip home from DC. When asked about her takeaway, Dr. Fraint cited a deeper appreciation of the innerworkings of Washington that private citizens and advocates can use to make their voices heard, as well as plans to continue advocating for important health care and research-related legislation. Dr. Fraint also had some words of advice for potential future ALI participants. “You have absolutely nothing to lose and so much to gain,” she said. “You never realize how much potential you have as an individual, and also as a representative of a larger cause until you try it out and see for yourself.”
Alexis Leonard, MD (2018)
Dr. Leonard is a clinical research associate in the Cellular and Molecular Therapeutics Branch at the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health (NIH) in Bethesda, MD.
Dr. Leonard thought ALI would be a great introduction to the advocacy world and hoped to learn practical advocacy skills and meet others with similar interests. Dr. Leonard explained that she entered medicine to serve patients and their families. “Now more than ever, I realize there are many ways to do this,” she said. Dr. Leonard’s primary interest and current research area is sickle cell disease (SCD) — a disease she acknowledged as being historically neglected. “I am fortunate enough to be a part of the cutting-edge research in SCD,” she began, “yet I am simultaneously aware of the major hurdles necessary to implement this remarkable research.” She believes that the passion she witnesses daily in the scientific community and among patients and families signifies the need for more voices to raise awareness and fight for adequate funding to address those hurdles. Dr. Leonard found such voices at ALI. “Ultimately ALI provided the introduction, framework, and push for me to continue advocating on my own,” she said.
After ALI, Dr. Leonard immediately shared her experience with colleagues; she explained she was pleasantly surprised at how easy it is to sit down with congressional representatives, talk and engage with them, and feel heard. Colleagues even asked to join her next time she took part in advocacy activities. ALI stresses the importance of presenting your concerns directly and quickly to busy state and federal legislators. “Learning to be an effective communicator is critical not only in advocacy but in communicating with patients and families, during scientific presentations, and when networking,” she stressed. Since ALI, Dr. Leonard has reached out to senators and representatives, has written an op-ed on legislative funding for SCD, and looks forward to becoming involved in the next grassroots movement that requires advocacy.