2016 ASH Advocacy Efforts Related to Sickle Cell Disease and Sickle Cell Trait
Published on: November 17, 2016
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
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
- 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
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.
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
- 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
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