2018 ASH Advocacy Efforts Related to Sickle Cell Disease and Sickle Cell Trait

Dec 11, 2018

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 2018.

Advocacy with HHS

  • In July, ASH leadership met with ADM Brett P. Giroir, MD, HHS Assistant Secretary for Health, and VADM Jerome M. Adams, MD, MPH, United States Surgeon General, to discuss ASH’s efforts on SCD. During the meeting, the ASH leaders identified areas where the Society and the Assistant Secretary's office can collaborate on this important multi-faceted initiative to improve the lives of people living with SCD.
  • ASH staff continues to interact with ADM Giroir through both written and in person communication. Dr. Robert Brodsky, ASH Secretary, represented the Society at a late-July 2018 HHS “Sickle Cell Disease Engagement Roundtable,” a listening session with ADM Giroir for patient organizations on SCD-related challenges and opportunities.
  • ADM Giroir visited ASH Headquarters in late August 2018 during a meeting of the Emergency Department Collaborative which aims to change the protocol in Emergency Department for treating patients with SCD. Additionally, in early September, ADM Giroir, presented the keynote address at the first-ever SCD Coalition Meeting at ASH Headquarters. ADM Giroir also delivered a welcome speech via video at the FDA-ASH October Clinical Endpoints Workshop.
  • Under ADM Giroir’s leadership HHS’ Office of Minority Health (OMH) has requested the assistance of the National Academies of Sciences, Engineering, and Medicine in developing a strategic plan and blueprint for addressing SCD in the United States. The National Academies recently started to solicit nominations for the special committee of experts that will examine the epidemiology, health outcomes and complications of SCD, along with the economic burden and current practices for care.

Advocacy with Congress

In 2018, ASH continued to work with congressional champions and members to raise awareness for SCD on Capitol Hill and to encourage the introduction and advancement of legislation to strengthen current federal SCD programs. The focus of ASH’s multiple Hill Days focused on SCD, which resulted in the following advocacy wins over the year:

Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act

  • On February 26, the House of Representatives passed H.R. 2410, the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act, legislation that ASH has advocated for over the past several years. The legislation, introduced by Representative Danny Davis (D-IL) and supported by other Members of Congress, authorizes the Department of Health and Human Services to make grants to states to collect data on the prevalence and distribution of sickle cell disease, conduct sickle cell disease public health initiatives to improve access to care and health outcomes, and identify and evaluate strategies for prevention and treatment of sickle cell disease complications. It also reauthorizes a health care education, training and care program that is implemented by the Health Resources and Services Administration (HRSA).
  • Just days after the passage of H.R. 2410 in the House, Senators Tim Scott (R-SC) and Cory Booker (D-NJ) introduced a Senate companion bill (S. 2465). The Senate legislation expands upon the provision authorizing data collection grants to also allow academic institutions and non-profit organizations, in addition to states, to apply for grants to gather information on the prevalence of SCD and the health outcomes, complications, and treatment that people with SCD experience.
  • As part of Senate’s companion bill’s introduction in February, Senator Booker hosted a roundtable discussion on SCD and ASH Secretary Dr. Robert Brodsky participated in the discussion with the Senator on behalf of the Society.
  • On July 18, 2018, the bill was unanimously approved by the Senate Health, Education, Labor, and Pensions (HELP) Committee. ASH was joined by 51 other organizations in sending a letter to Senator Lamar Alexander (R-TN), Chairman of the Senate HELP Committee, urging the committee’s support for the legislation.
  • S. 2465 was unanimously approved by the full Senate on October 11, 2018 and subsequently passed by the House on December 11, 2018. President Trump is expected to sign the bill into law. ASH issued a statement thanking Congress and the Administration for their support of the legislation and issues related to SCD.

Additional Efforts to Raise Awareness for SCD on Capitol Hill

  • In late September, ASH supported Senate Resolution 661, which was introduced by Senator Tim Scott, to designate September 2018 as "Sickle Cell Disease Awareness Month." The resolution was intended to educate communities across the United States about SCD and the need for research, early detection methods, effective treatments, and preventative care programs with respect to SCD, complications from SCD, and conditions related to SCD.
  • On September 5, ASH joined the Sickle Cell Disease Association of America (SCDAA) to host a briefing on Capitol Hill to educate Members of Congress and their staff on sickle cell trait (SCT). Congressman Bill Foster (D-IL) sponsored the briefing, which presented a general overview about SCT and highlighted the importance of knowing what it means to have trait, the current state of SCT research, and a personal story of one family’s journey.

Additional SCD Advocacy-Related Activities

  • ASH continued to take important steps to improve reimbursement for SCD care and treatment., by highlighting SCD in several of the Society’s letters to the Centers for Medicare & Medicaid Services.

  • In 2016, ASH founded the Sickle Cell Disease Coalition (SCDC) to help amplify the voice of the SCD stakeholder community, promote awareness, and improve outcomes for individuals with SCD. Twenty additional organizations joined the Coalition in 2018, and the membership now includes a platform of over 65 public health, research, and provider organizations; patient groups; federal agencies, industry representatives, and foundations interested in SCD and engaging in joint action. 
  • The ASH branded video, a 10-minute short film, highlights the efforts currently underway in Ghana and how parents can ensure that their children with SCD get appropriate care.
  • The SCDC video is a 30 second public service announcement that directs people to a global library of SCD resources in Africa.
  • On September 20, ASH joined 24 other organizations to publish a report card on the state of sickle cell disease (SCD) in 2018. This snapshot of the state of SCD suggests that progress has been made since ASH and other partner groups issued a 2016 call-to-action to change the status quo for people with SCD, yet more can be done for SCD patients.