2016 Research Advocacy Highlights

Nov 17, 2016

During 2016, ASH has continued to be one of the most visible advocates for federal support of biomedical research and funding for the National Institutes of Health (NIH) and took the following actions:

  • Grassroots Advocacy Campaigns – ASH developed several on-line advocacy campaigns for all Grassroots Network members to join in an effort to urge Congress to support federal medical research funding. Members can visit the ASH Advocacy Center to find a sample letter supporting funding for NIH. They can then enter their contact information, and the site will send the letter directly to their Representative and Senators. Information is also included about how to contact Members of Congress via phone. During the past year, members of the ASH Grassroots Network sent thousands of messages to Capitol Hill in support of NIH funding.
  • Hill Days and Congressional Visits – Hundreds of congressional visits were made by the ASH Committee on Government Affairs, ASH Advocacy Leadership Institute participants, ASH Officers, and other ASH members throughout the year. The message conveyed to Members of Congress and their staff, focused on the value of NIH and the need to support sustained federal research funding. Some highlights from ASH member meetings throughout the year are shown below.
  • Testimony – Earlier this year, during hearings concerning the FY 2017 federal budget, ASH submitted written testimony to the House and Senate Appropriations Committees supporting funding for NIH and urging the committees to recognize the progress and potential future advances shown by hematology research.

  • Coalition Activities – ASH continues to work with the Coalition for Health Funding (CHF), the Ad Hoc Group for Medical Research, and members of the biomedical research community to advocate on behalf of NIH and public health program funding. As part of this effort, ASH was once again a sponsor and supporter of the Rally for Medical Research Hill Day, held September 22 in Washington, DC. Participants from more than 350 partnering organizations met with more than 250 House and Senate offices to call on our nation's policymakers to make funding for the NIH a priority and raise awareness about the importance of continued investment in scientific research that ultimately leads to more progress, more hope and more lives saved.

  • Cancer Moonshot Initiative – In the spring, ASH met at the White House with Greg Simon, Executive Director of the Cancer Task Force, to share the Society’s scientific recommendations for the National Cancer Moonshot, an initiative spearheaded by Vice President Joe Biden that aims to make a decade’s worth of progress in cancer research within the next five years. The recommendations, developed by the ASH Task Force on Precision Medicine and based on the Society’s Agenda for Hematology Research, are designed to provide direction and focus to ensure that reasonable and sustainable investment choices are made. Additionally, in response to a request for information from the National Cancer Institute (NCI), ASH submitted recommendations to address research and clinical gaps that could accelerate the treatment of hematologic malignancies in the following areas:
    • Precision, Prevention, and Early Detection
    • Expanding Clinical Trials
    • Cancer Immunology and Prevention 
    • Enhanced Data Sharing 
    • Pediatric Cancers
    • Tumor Evolution and Progression 

    A number of the Society’s recommendations aligned with many of the priorities (e.g., proper infrastructure for data sharing, robust clinical trials for pediatric hematologic malignancies, development of national clinical trial networks, leveraging novel therapeutic approaches such as immunotherapies for the treatment hematologic malignancies and advancing research on hematologic tumor development and progression) included in a report released by the Cancer Moonshot Blue Ribbon Panel in September.

    In June, ASH joined Vice President Joe Biden’s National Cancer Moonshot Summit, a day-long conference intended to jumpstart the Administration’s effort to double the pace of cancer research. The Society's initiative to establish a robust infrastructure of shared multiple myeloma data that will inform better understanding and treatment of this cancer and serve as a model for others was highlighted in the White House Fact Sheet that was circulated to all Cancer Moonshot Summit participants as well as with the media.
  • NHLBI Strategic Planning – In August, the National Heart Lung and Blood Institute (NHLBI) has released its strategic vision which highlights its goals and research priorities that will inform its policy and funding decisions for heart, lung, blood, and sleep diseases (HLBS) in the next several years. ASH participated in the NHLBI’s strategic visioning process and submitted additional comments when the NHLBI’s draft strategic priorities were released. The Society’s comments were developed based on the Society's Agenda for Hematology Research and Priorities for Sickle Cell Disease and Sickle Cell Trait as well as with additional input from the ASH Committee on Scientific Affairs, the Society’s 18 scientific committees and the Executive Committee. Many of the Society’s recommendations (some in the form of compelling questions or critical challenges) were included in the Institute’s final list of research priorities.
  • Member Stories – ASH has collected stories on the impact of NIH budget cuts to share with Congress, the media, and key stakeholders. ASH members are encouraged to continue sharing stories of how NIH funding affects their research, patients, or career.

Additional materials, comment letters, and testimony concerning ASH advocacy related to NIH funding can be found on the ASH website.