(L-R) ALI members Drs. Kyle Davis, John Jakob, Tamanna Haque, and Dana Angelini during a visit to Capitol Hill.
(L-R) ALI members Drs. Kyle Davis, John Jakob, Tamanna Haque, and Dana Angelini during a visit to Capitol Hill.
All hematologists advocate on behalf of their patients, but for some doctors who are patients themselves, advocacy is personal. The Hematologist recently spoke with Dr. Kyle Davis, an ASH member who was born with hemophilia A and has been a lifelong advocate for patients with special health care needs. Now in his third year of a pediatric hematology/oncology/bone marrow transplantation fellowship at Nationwide Children’s Hospital in Columbus, Ohio, Dr. Davis is working to improve patient outcomes in children with bleeding disorders and continues to engage in advocacy work through the ASH Grassroots Network.
Dr. Davis’ first introduction to patient advocacy came through his involvement with the Columbus chapter of the National Hemophilia Foundation. Before he was a physician, he visited state policymakers in Ohio and congressional staff in Washington, DC, as part of advocacy days organized by the National Hemophilia Foundation and the Ohio Bleeding Disorder Council.
Dr. Davis saw firsthand the difference he could make through advocacy when Ohio proposed to reduce funding for the Bureau for Children with Medical Handicaps (BCMH) program, which supports families with specialized health care needs in Ohio. “My proudest advocacy achievement was working with the Ohio Bleeding Disorder Council and Rep. John Patrick Carney to protect the BCMH program,” he said. “My testimony and our introduction of a bill with Rep. Carney helped maintain funding for our families.”
Dr. Davis acknowledges that legislative victories like this do not happen in a vacuum, and he recognized the need for organizations such as ASH to mobilize as many advocates as possible to explain to legislators why certain issues matter. Now that he is a practicing hematologist, Dr. Davis has joined the ASH Grassroots Network, which provides members with regular updates and information about how to stay in touch with members of Congress. The Society can also help arrange meetings for Grassroots Network members with their legislators, either in Washington, DC, or back home, and provide fact sheets and talking points to use in these meetings.
With the support of the ASH Grassroots Network, Dr. Davis has worked hard to build good relationships with his elected officials at both the state and federal levels. Keeping regular correspondence with your elected members of Congress helps to establish you as a known resource for your legislator’s office and provides a way to continually educate lawmakers on how they impact both hematology practitioners and patients. “I recognize that legislators are motivated to care for their constituents but often do not know how their work will directly impact our ability to care for our patients,” explained Dr. Davis. “We stand in a very important position to provide that insight and offer personal stories about how their decisions affect our patients’ lives.”
In addition to being a member of the Grassroots Network, Dr. Davis expanded his role in the Society’s advocacy efforts last year by participating in the ASH Advocacy Leadership Institute (ALI), a two-day program in Washington, DC, that teaches ASH members to be effective hematology advocates. “By participating in ALI, I have been introduced to many strong advocates within my own state as well as the hematology community,” Dr. Davis explained.
ALI participants undergo in-depth training on ways to be effective advocates on behalf of hematology, regardless of previous experience. The program begins with learning about the federal legislative process and health policy as well as training for effective ways to influence the U.S. Congress. The program ends with participants visiting their congressional delegation on Capitol Hill to apply what was learned. “The most important take-home message for me was regarding how to make your senators or representative understand the importance of your request by telling them a story to help explain how they could help our patients,” said Dr. Davis.
ASH is dedicated to supporting its members in advocating for hematology at the local, state, and national levels of government. To learn more and to sign up for the ASH Grassroots Network, visit the ASH Advocacy Center. Additionally, nominations are now being accepted through May 31, 2020, for the 10th annual ALI, which will be held in Washington, DC, on September 22-23, 2020. More information on ALI and the nominations process can be found at www.hematology.org/ALI.
