2018 ASH Advocacy Efforts Related to Sickle Cell Disease and Sickle Cell Trait
Published on: December 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
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.
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.
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
of experts that will examine the epidemiology, health outcomes and
complications of SCD, along with the economic burden and current practices for
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
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
- 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.
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
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- 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.