2016 ASH Advocacy Efforts Related to Sickle Cell Disease and Sickle Cell Trait
The American Society of Hematology (ASH) is committed to addressing the burden of sickle cell disease (SCD) and is undertaking a multifaceted initiative to improve outcomes for individuals with the disease, both in the United States and globally. ASH has engaged a broad group of experts and stakeholders to review the state of SCD and identify the greatest opportunities for improvement. ASH continues to invest in and explore the important actions needed to make a significant difference in SCD access to care, research, and global issues. The following are the major advocacy-related initiatives undertaken by ASH in 2016:
Sickle Cell Disease Coalition (SCDC)– ASH recently founded the SCDC to help amplify the voice of the SCD stakeholder community, promote awareness and improve outcomes for individuals with SCD. The SCDC focuses on promoting research, clinical care, education, training, and advocacy and the growing membership of over 30 national and global groups is comprised of public health, research and provider organizations; patient groups; federal agencies, industry, and funding organizations. More information about the SCDC is available here.
Public Awareness Campaign on SCD – In September, during National Sickle Cell Awareness Month
ASH and other partner organizations in the SCDC launched a Call to Action on SCD. As the cornerstone of the campaign and in an effort to identify unmet medical needs for people with SCD, ASH issued the State of Sickle Cell Disease: 2016 Report, which evaluates the disease in four priority areas — access to care, training and professional education, research and clinical trials, and global health. The report was endorsed by over 20 additional groups and shows that significant improvements are needed across all areas and provides a blueprint to advance these actions related to access to care, research and clinical trials, and global issues in the short- and long-term. A website for the SCDC was also launched in September and it serves as the home for the campaign and related information and resources for organizations and individuals who want to get involved or help spread the word about this
Policy Strategy on SCD– ASH continues to work with federal agencies and the U.S. Congress to help enhance and expand government activities in SCD research, training, and services. ASH is working with congressional champions to raise awareness for SCD on Capitol Hill and to have legislation introduced to strengthen current federal SCD programs. ASH advocates took the following steps over the past year to advance the Society’s SCD-focused advocacy agenda.
- In early February, ASH launched the Society’s SCD-focused advocacy activities by co-hosting a congressional staff roundtable meeting on SCD with the Sickle Cell Disease Association of America. The program featured ASH President Dr. Charles Abrams and ASH Vice President Dr. Alexis Thompson, as well as a sickle cell patient advocate, Mr. Kyle Smith, who presented the startling facts about SCD and the burden of the disease; highlighted new practice-changing guidelines and research; and facilitated a discussion of legislative strategies to help improve the lives of individuals with SCD. The standing room only event, helped generate interest amongst congressional staff about SCD.
- In late March, the ASH Committee on Government Affairs visited more than forty congressional offices to encourage House and Senate offices to support comprehensive SCD legislation to enhance federal government activities in SCD research, training, and services. ASH specifically noted that the following priorities would be important components of a legislative package addressing SCD:
- Authorization of the Department of Health and Human Services’ Interagency Working Group on SCD to coordinate efforts among federal agencies.
- Enhancement of the Centers for Disease Control and Prevention’s SCD surveillance and outreach and education on SCD and sickle cell trait for patients and providers.
- Improvement of access to high quality care via demonstration projects and development of best practices.
- Provision of incentives for drug development for SCD within the Food and Drug Administration (H.R. 1537, Advancing Hope Act of 2015).
- ASH continues to advocate for a SCD payment model with Congress and the Center for Medicare and Medicaid Innovation (CMMI).
- In late April, ASH submitted a letter to the CMMI to consider the development of a payment model that would provide integrated comprehensive care for adults with SCD. In addition to providing adequate reimbursement to providers, the model includes funding for care coordinators/case managers for individuals with SCD with incentives to reduce hospital admissions/readmissions and emergency department visits.
- In the late spring, the Committee on Practice and 2016 ASH Advocacy Leadership Institute participants visited more than eighty congressional offices to encourage House offices to sign onto a “Dear Colleague” letter circulated by Representative Danny Davis (D-IL) that urged CMMI to develop a Medicare pilot program (payment model) focused on improving outpatient care for individuals SCD. Representative Davis, along with approximately 15 other House offices, submitted the final letter to CMMI in late June 2016. Senate offices were asked to take the lead and circulate a similar “Dear Colleague” letter in the Senate. Senator Tim Scott (R-SC) recently indicated an interest in sending a revised version of the House letter to the Centers for Medicare & Medicaid Services in the near future. ASH will continue to work with his office to help secure co-signers for the Senate letter.
- In July, ASH submitted a letter to the Social Security Administration (SSA) in response to the Agency’s IdeaScale Campaign for “Hematological Disorders.” ASH’s comments focused on the SSA’s evaluation of sickle cell disease (SCD) and specifically recommended broadening the criteria to better address the complications individuals with SCD experience.
- In September, ASH submitted testimony to the House Energy and Commerce Committee at a hearing focused on a number of bills that are aimed to improve public health, including H.R. 1807, the Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act of 2015. The legislation, introduced by Representatives Danny Davis (D-IL) and Michael Burgess (R-TX), would increase research, surveillance, prevention, and treatment for SCD within the Department of Health and Human Services. ASH’s testimony states support for H.R. 1807 and also recommends strengthening and expanding current federal efforts to help ensure that individuals living with sickle cell disease receive adequate care and treatment.
- In late September, the House and Senate approved one of ASH’s key SCD-related advocacy interests – an extension of the Advancing Hope Act of 2015 (S.B. 1878 and H.R. 1537) – through December 31, 2016. This legislation is an important part of the policy package for which ASH continues to advocate. The Advancing Hope Act expands the U.S. Food and Drug Administration’s priority review voucher program for rare pediatric diseases to include treatments for SCD and pediatric cancers. President Barack Obama signed the bill into law at the end of September.
SCD-Focused Advocacy with Funding and Stakeholder Organizations– ASH continues to advocate with funding organizations and other stakeholder to foster resources for SCD and sickle cell trait-related research and care. The following outlines the Society's recent action.
- In March, ASH submitted comments to the National Heart, Lung and Blood Institute (NHLBI) on its recently released draft strategic research priorities that will inform the Institute’s policy and funding decisions for the next several years. ASH’s comments were developed based on the ASH Agenda for Hematology Research and included examples of SCD-related research.
- In the spring, ASH, together with the Centers for Disease Control and Prevention and the Sickle Cell Disease Association of America released the final resources in the sickle cell trait toolkit, including the following fact sheets for providers and patients.
- Provider Fact Sheets
- Patient Fact Sheets
In the late spring, ASH released a toolkit for hematologists to ease the transitions between pediatric to adult care. These tools, for hemophilia, sickle cell disease, and general hematologic conditions, provide readiness assessment and clinical summary forms to start the conversation between providers and their patients and to ensure that the transition for patients is as smooth as possible. To download the forms, please visit the new ASH Transitions website.