Roy L. Silverstein, MD

2012-01-25

The Linda and John Mellowes Professor and Chairman, Department of Medicine, Medical College of Wisconsin  

In mid-October, 22 ASH members and associate members from 19 institutions across the country gathered in Washington, DC, for the first ASH Advocacy Leadership Institute. Participants brought a range of interests and perspectives to the two-day workshop, including those of clinicians involved in patient care covering the entire range of hematologic disorders affecting both children and adults, laboratory and clinical investigators (both MD and PhD), trainees, educators, and leaders. During the first day of the workshop, held at ASH headquarters, attendees were introduced to the important role of advocating to government officials in support of both biomedical research and issues relevant to the training of hematologists and the practice of hematology. They also toured ASH headquarters and learned about opportunities to get involved in programs and activities sponsored by ASH.

Mila Becker and Suzanne Leous, ASH staff from the Government Affairs and Practice departments, described how the federal legislative and regulatory process works and how ASH develops positions on key policy issues, such as stem cell research. Participants were then treated to remarks by former Congressman Michael Castle (R-DE) who explained that Members of Congress take letters and phone calls from constituents very seriously and how impressive it is when busy physicians and scientists take the time to visit their home offices or their offices in Washington to share concerns. He assured participants that individual voices matter and re-affirmed his strong support for biomedical research.

Dr. Griffin Rodgers, a sickle cell disease researcher and long-time ASH member who now serves as director of the National Institute for Diabetes and Digestive and Kidney Diseases (NIDDK) at NIH, echoed his support for advocacy and described how his Institute maintains open communication lines with its constituents, including ASH. He also reviewed the major efforts and commitments the Institute has made to hematology research over the past 50 years.

Over a working lunch, participants took part in a round-table discussion of current “hot” topics in Washington, led by Brent Jaquet and Ellen Riker from Cavarocchi Ruscio Dennis and Associates, a consulting firm that works with ASH in Washington. Conversation focused on both the generally pessimistic outlook for NIH funding attributed to pressures from deficit reduction hawks and the uncertainty of the economic impact of health-care reform.

Breaking into small groups, ASH staff then reviewed tools and strategies for making effective visits to congressional offices. Participants had done homework prior to the workshop to create personalized NIH funding fact sheets showing the specific economic impact of NIH-sponsored research in their home congressional districts and states. These sheets were reviewed and finalized in preparation for a visit to Capitol Hill that was arranged for day two of the workshop.

The next morning groups of four to five participants, each accompanied by an experienced ASH staff member, went to Capitol Hill and met with Members of Congress and Senators and/or their legislative staff from the home districts and states of the participants. Because of the emphasis on unemployment and the deficit in the current Congress, most of the discussion focused on the economic impact as well as the medical impact of NIH-supported research. Copies of the personalized NIH fact sheets along with specific information about ASH and hematology research were left with each office.

As a former member and chair of the ASH Government Affairs Committee with many years of advocacy experience, I was delighted to serve as chair of the workshop. It was extremely gratifying to see the growing excitement and enthusiasm of the workshop participants as the sessions unfolded. Thanks to the efforts of Ulyana Desiderio, PhD, who organized the workshop, and other ASH staff, the inexperienced group quickly became comfortable with the process. Successful advocacy is all about “telling a story,” and participants soon realized that ASH members have a compelling story to tell about their patients and the role of that research plays as the engine that drives improvement in health care.

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