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2020 ASH Advocacy Efforts Related to Sickle Cell Disease

In 2020, ASH continued to work with federal agencies, leaders at the United States Department of Health and Human Services (HHS) and the U.S. Congress to help enhance and expand government activities in sickle cell disease (SCD) research, training, and services. ASH staff has been educating congressional members about SCD and identifying opportunities to advance the SCD advocacy agenda. ASH also continues to encourage the Centers for Medicare & Medicaid Services to test innovative payment models for SCD care delivered by health care professionals, as well as take other important steps to improve reimbursement for SCD care and treatment. Additionally, ASH has been focused on addressing the challenges that the SCD community continues to face with the COVID-19 pandemic.  The following includes highlights of ASH’s related efforts over the past year. 

Advocacy with HHS 

  • Over the past few years, ASH leadership and staff has frequently met with ADM Brett P. Giroir, MD, HHS Assistant Secretary for Health, to discuss ASH’s efforts on SCD. During these meetings, the ASH leaders identified areas where the Society and the Assistant Secretary's office could collaborate to improve the lives of people living with SCD. In recognition of his commitment to SCD, ASH presented the Outstanding Service Award to ADM Giroir at the ASH 62nd Annual Meeting and Exposition.
  • In February 2020, ADM Giroir invited ASH representatives to participate in a HHS meeting with the World Bank about potential opportunities for collaboration in global SCD efforts.
  • As a direct result of ASH advocacy with ADM Giroir, the Centers for Disease Control and Prevention (CDC) received  a transfer of approximately $3 million FY 2020 funding to help support the expansion of the Agency’s Sickle Cell Disease Data Collection Program.  This provides funding for nine states to expand and develop systems to collect data on the issues faced by people living with SCD.  The new funding covers grantees in Alabama, California, Georgia, Indiana, Michigan, Minnesota, North Carolina, Tennessee, and Wisconsin. 
  • Also, ASH’s advocacy with ADM Giroir resulted in HHS’s Office of Minority Health commissioning the National Academies of Sciences, Engineering, and Medicine report on Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, As highlighted below, ASH continues to leverage this report to help advance ASH’s SCD policy and advocacy priorities.

SCD Advocacy on Capitol Hill 

  • Since April, ASH has worked with sickle cell disease (SCD) champions on Capitol Hill to introduce legislation that would authorize the Centers for Medicare and Medicaid Services (CMS) to develop a Medicaid demonstration project to improve access to state-of-the-art, high quality outpatient care for individuals living with SCD with a focus on young adults.
    • In May, Representative Danny Davis (D-IL) was joined by 35 of his colleagues in sending a letter to congressional leadership requesting support for the demonstration project, and ASH led a letter from nearly 70 partner organizations to Congressional leadership in support of the effort.
  • ASH submitted a statement for the record as part of the House Ways and Means Committee’s hearing on “The Disproportionate Impact of COVID-19 on Communities of Color.” ASH expressed concern that the COVID-19 crisis is exacerbating the already fragile system of care for many patients with Sickle Cell Disease (SCD) and submitted a similar statement for the record of the House Energy and Commerce Committee hearing, “Oversight of the Trump Administration's Response to the COVID-19 Pandemic.”
  • ASH has continued to focus on securing funding for the CDC’s SCD Data Collection program in FY 2020 and beyond, which was authorized by the 2018 Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act (S. 2465).
    • As a result of ASH’s advocacy, language in the report accompanying the House-passed FY 2021 Labor-HHS spending bill instructs the CDC’s Division of Blood Disorders “to establish a population-based surveillance system to collect and analyze longitudinal data on people living in the U.S. with sickle cell disease and established a separate budget account for sickle cell disease.”
    • An amendment was offered when the bill was considered by the full House to include $2 million in dedicated funding for the Sickle Cell Disease Data Collection Program at the CDC. ASH sent an alert to members of the Grassroots Network to contact their representatives and urge them to vote in favor of the amendment. The amendment passed on July 31, 2020, and was included as part of the bill that subsequently passed the House.
    • In November, ASH and 35 SCD partner groups sent a letter to Congressional leaders asking for $5 million of dedicated funding for the SCD Data Collection Program be included in the final House-Senate negotiated omnibus appropriations bill for fiscal year (FY) 2021.
  • On October 8, ASH and the Sickle Cell Disease Association of America (SCDAA), in conjunction with Senators Tim Scott (R-SC) and Cory Booker (D-NJ) and Representatives Danny K. Davis (D-IL) and Michael C. Burgess, M.D., (R-TX), hosted a virtual congressional briefing on sickle cell disease (SCD). The briefing presented an overview about the current state of SCD during the pandemic and highlighted the recent report, Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action, released by the National Academies of Sciences, Engineering, and Medicine (NASEM), along with policy strategies as recommended by the report. A recording of this informational and well-attended briefing is viewable online.

Advocacy to Address Pain Management in Individuals with SCD 

  • In June, ASH submitted comments to the CDC in response to the Agency’s request for stakeholder input on the management of acute and chronic pain and encouraged the Agency to protect the special treatment status allowing opioids to be prescribed for chronic pain in patients who have SCD, are under active cancer treatment, or are receiving palliative or end-of-life care.

SCD-Focused Payment and Coverage Related Advocacy

  • Earlier this year, ASH leadership and staff met with ADM Giroir and his staff at HHS to discuss how prior authorization requirements for many services and treatments for individuals with SCD are delaying access to treatment.
  • On February 20, ASH submitted comments in response to the Institute for Clinical and Economic Review’s (ICER) Draft Evidence Report on three treatments for sickle cell disease (SCD) - voxelotor, crizanlizumab, and L-glutamine. ASH has been engaged throughout ICER's sickle cell disease (SCD) assessment and is concerned that this review is premature and does not take into account extenuating circumstances. The in-person meeting and final report have been indefinitely delayed due to the COVID-19 pandemic.
  • On April 2, ASH submitted comments in response to the proposed rule outlining changes to Medicare Part D and Medicare Advantage for calendar year 2021. Specifically, the Society commented on two provisions related to individuals with SCD—supporting the proposal that individuals with SCD be excluded from drug management programs and from the new definition of “inappropriate prescribing of opioids” included in the proposed rule.
  • On July 17, ASH submitted a letter to CMS in support of a proposed rule aiming to reduce barriers within the Medicaid program that would make it easier for payers to implement value-based payment (VBP) arrangements. The rule also included proposals that could potentially limit opioid prescriptions; ASH urged the agency to exempt individuals with SCD from these reactions.

Other Efforts to Raise Awareness for SCD

  • ASH worked with the Food and Drug Administration (FDA) and other partners to address the significant challenges of maintaining the national blood supply during the pandemic and to raise awareness related to these actions.
    • ASH and the Sickle Cell Disease Association of America, Inc. (SCDAA) sent a letter to the American Red Cross, AABB, and America’s Blood Centers about the impact that supply challenges were having on individuals with SCD, as well as guidance for SCD providers to help conserve red cell units and encourage donations.
  • On September 10, ASH released a statement in support of the National Academies’ report on SCD; and in October, ASH Executive Director Martha Liggett represented the Society during the National Academies Stakeholder Feedback Meeting on the report.
  • On September 17, ASH and 35 other SCD stakeholder groups released the State of Sickle Cell Disease (SCD) 2020 Report Card, which suggests that progress is being made in most areas, but more has to be done to improve the state of care for those living with SCD.