2015 ASH Advocacy Efforts Related to Sickle Cell Disease and Sickle Cell Trait

ASH is committed to addressing the burden of sickle cell disease (SCD) worldwide and continues to work with various groups in the sickle cell stakeholder community, Congress, the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and other federal agencies to increase research, treatment options, and access to care for patients with SCD. The Society has also taken a number of steps to increase education and awareness about sickle cell trait (SCT). The following are the major initiatives undertaken by ASH in 2015:

Sickle Cell Disease-Focused Activities

• SCD-Focused Meeting, Programs and Resources – In 2015, ASH developed and hosted the following meetings, programs and resources to help improve the care of patients with SCD.
  • SCD Summit – In April, the Society hosted the ASH SCD Summit: A Call to Action as a first step to a broader initiative, to identify the highest priority actions needed to improve outcomes for individuals with SCD in the United States and globally, and to map a plan to advance these actions in the short-term (less than five years) and long-term (five to ten years). Over 60 people stakeholders attended the Summit, including clinicians and researchers; federal agency partners; other representatives from the SCD community, industry, and foundations.
    
    The Summit set the stage for developing a collaborative and forward-looking initiative. The discussions identified key partners and yielded ideas that addressed issues which included reimbursement concerns, models of multidisciplinary quality-focused care, existing gaps in research, as well as the education and training of care providers. ASH plans to release a Call to Action on SCD in early 2016, based on the strategies developed at the feedback received during the Summit from the broader stakeholder group.
  • SCD Resource Webpage – In August, the SCD resource webpage was launched on the ASH Website. The webpage includes information about ASH's SCD-related initiatives; links to ASH's current SCD tools and resources (i.e. ASH Priorities for SCD and SCT, Blood MicroSite on SCD, ASH SCD pocket guides, ASH's Consult-A-Colleague program).
  • Educational Webinar on SCD – In September 24, ASH hosted an educational webinar on the optimization of Hydroxyurea for the management of SCD. The webinar highlights recommendations related to Hydroxyurea therapy from the NHLBI Expert Panel Report, discusses new data that modifies or expands on some of those recommendations, and reviews methods for optimizing Hydroxyurea therapy for individual patients.
  • SCD Guideline Implementation Meeting – In November, ASH hosted an interdisciplinary stakeholder meeting on November 3 to explore ways to support implementation of the NHLBI's Evidence Based Management of SCD: Expert Panel Report, 2014. The purpose of the meeting was to gather invested stakeholders to develop realistic, actionable, and accountable activities to advance the dissemination and implementation of the recommendations contained within the expert panel report. ASH staff has begun compiling ideas from all of the breakout sessions that took place during the meeting. Once synthesized, this information will be shared with stakeholders for prioritization and to encourage volunteers to take the lead on certain projects.
• SCD-Focused Advocacy with Funding Organizations – ASH continues to advocate with funding organizations to foster resources for SCD-related research and care. The following outlines the Society's recent action.
  • SCD Research Priorities – ASH included several SCD-focused research recommendations in the Society's response to National Heart, Lung, and Blood Institute's (NHLBI) strategic planning process and the Institute has already incorporated the suggestions into the NHLBI's draft strategic research priorities.
  • SCD-Focused Legislative Language – ASH successfully advocated for SCD-specific priorities with Congress and Federal Agencies. In the spring, ASH also advocated for SCD-specific language in the Society's testimony to the Senate and House Labor, Health and Human Services, and Education (L-HHS-Ed) Appropriations Subcommittees, as well as during the spring Committee on Government Affairs Hill Day. ASH advocacy was successful and the SCD-specific language was included in the final Senate FY 2016 L-HHS-Ed Appropriations Report, which urged HHS to ensure coordination and collaboration between federal agencies with an interest in SCD.
  • NHLBI's SCD Forum – On June 25-26, NHLBI hosted the SCD Forum – Engaging the Community: Developing Solutions. The overall goal of the meeting was to "help chart the future of SCD research." More than 400 representatives from the SCD community participated in the forum in person and remotely, including patients and their families, advocates, health-care professionals, researchers, representatives from federal agencies, industry, and the media. ASH cosponsored the forum, and Dr. David Williams (ASH President and member of ASH's SCD Task Force) presented an update on ASH's SCD-related activities.
  • Improving Payment for SCD – On October 21, ASH representatives met with leaders at the Center for Medicare and Medicaid Innovation (CMMI) about a potential new payment model for SCD. ASH members and staff informed CMMI of the large number of sickle cell patients who were insured by the Medicaid and Medicare programs and the high cost to the programs despite the relatively small number of patients. The group also addressed gaps in care and how they may be improved and how treatment of sickle cell patients could be addressed through some kind of bundled payment program. CMMI expressed interest in potentially pursuing models that were focused on less common diseases such as sickle cell, since to date, the agency has only focused on more common diseases, including cancer. ASH will continue to speak to CMMI to follow-up with more evidence and continue to advocate for a SCD model.

Sickle Cell Trait-Focused Activities

• Congressional Resolution on SCT – In early June, ASH supported a congressional resolution on SCT, which was introduced in the U.S. House of Representatives (H.Res. 296) by Representatives Barbara Lee (D-CA) and Michael C. Burgess (R-TX). The resolution calls for expanded government efforts to increase SCT research and improve access to screening and education for individuals with SCT. ASH was instrumental to ensuring key provisions were included in the resolution and the Society also issued a statement applauding this bipartisan effort to advance understanding of SCT.
• News Resources in SCT Toolkit – In September, ASH, together with the Centers for Disease Control and Prevention and the Sickle Cell Disease Association of America released new resources in a SCT toolkit, including fact sheets for health-care providers, individuals with SCT who are or are not aware of their status, their families, and coaches and athletic trainers. The new fact sheets address SCT and sports, diabetes testing, and blood and organ donation.