On September 24, 2018, 25 ASH members participated in the Society’s eighth annual Advocacy Leadership Institute (ALI) in Washington, DC. This two-day workshop provides participants with insight on ASH’s role in the legislative process and trains them to be effective advocates. The second day provides an opportunity for participants to meet with their elected officials and their staff to put into practice what was learned on the first day, through techniques like effective story-telling.
This year, ALI participants visited more than 45 congressional offices to advocate for dedicated funding for sickle cell disease (SCD) at the Centers for Disease Control and Prevention (CDC) and for continuous, predictable funding for the National Institutes of Health (NIH). The visits occurred just days before Congress finalized a $2 billion increase for NIH through the Labor, Health and Human Services, Education, and Related Programs (Labor-HHS) fiscal year (FY) 2019 appropriations bill. This marked the first time since 1996 that Congress passed this bill on time and is the fourth consecutive funding increase for NIH. ALI members were able to directly educate House members about an imminent vote and thank Senate members for already passing the legislation.
The Hematologist spoke with two recent ALI participants, Dr. Alexis Leonard, a researcher at the NIH and clinician at Children’s National Medical Center and Dr. Deepa Manwani from Montefiore Medical Center, about their time in our nation’s capital.
For Dr. Leonard and many other participants, ALI provided an opportunity to learn how to be a more effective advocate for their patients. “I want to become a voice, raising awareness and fighting for adequate funding for my patients with SCD,” Dr. Leonard stated. “ALI was the perfect introduction to learn these important skills, meet others with similar interests, and provide the framework to continue advocating on my own with confidence in the future.”
Dr. Manwani also works with SCD patients and understands how critical it is to secure continuous, predictable funding for NIH. “I would love to see these patient’s health outcomes improve in my lifetime,” she said. Dr. Manwani was also interested to learn how easy it was to meet with members of Congress and their aides: “I was surprised by how much of a presence ASH has up on the Hill … and by how interested congressional members and their aides were in hearing from their own constituents about personal experiences.”
Drs. Leonard and Manwani both noted they were excited to continue their advocacy efforts when they returned home. “I am totally fired up!” exclaimed Dr. Manwani. “I would love to continue to contribute back home any way I can.” Dr. Leonard added that she hoped to get others involved as well, “I will absolutely continue my advocacy back home and will encourage my colleagues and patients’ families to do the same.”
All ASH members can participate in the Society’s advocacy efforts by joining the Grassroots Network to receive regular updates and information about how to contact their members of Congress. Additionally, staff in the ASH Government Relations and Practice Department are available to help set up meetings with congressional staff in Washington, DC, or in a legislator’s state or district office, and can also provide the information needed to be an effective advocate, including fact sheets and relevant talking points. For more information, visit www.hematology.org/advocacy.
Mark Your Calendar for Policy and Practice Lunches at the 60th ASH Annual Meeting
The ASH Grassroots Network Lunch, to be held Saturday, December 1, 2018, at 11:15 a.m., in the Marriott Marina Ballroom G in San Diego, will provide a space for ASH leaders and colleagues to discuss the impact of a changing political landscape in Washington and how it affects hematology. Attendees will have the opportunity to learn about ASH’s advocacy efforts, including the Society’s communications with Congress and federal agencies, and how to become an effective advocate for hematology.
The following day, ASH will host the ASH Practice Partnership (APP) Lunch at 11:15 a.m., in the same location. This year’s APP Lunch, which is dedicated to the practice community, will be moderated by ASH Committee on Practice Chair Dr. Joseph Alvarnas of City of Hope National Medical Center, and will focus on How to Incorporate Palliative Care into Practice. Panelists will discuss barriers that many physicians face as well as potential solutions. Speakers include Dr. Areej El-Jawahri of Massachusetts General Hospital, Dr. Tammy Kang of Texas Children’s Hospital, and Dr. Robert Arnold of University of Pittsburgh.
