2017 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 2017.

Sickle Cell Disease Coalition (SCDC)

One year after the founding of the SCDC, membership grew to over 50 national and global groups representing public health, research and provider organizations; patient groups; federal agencies; industry; and funding organizations. The SCDC helps 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. The monthly SCDC Update and recently enhanced SCDC website include information about the SCDC and the important work of the coalition and its members. The coalition is now also now on Twitter (@ConquerSCD), which includes the latest SCD-related news from SCDC partner organizations.

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 and the Society’s advocates took the following steps in 2017 to advance the Society’s SCD-focused advocacy agenda:

In March and May, the ASH Committees on Government Affairs and Practice visited more than eighty congressional offices to encourage the House and Senate to provide $1-2 million for SCD surveillance, outreach, and education programs to the Centers for Disease Control and Prevention’s (CDC) Blood Disorders Division, in the fiscal year (FY) 2018 Labor, Health and Human Services, and Education Appropriations bill. Because of their interest in SCD, ASH advocates specifically targeted Senators Tim Scott, Lindsey Graham and Cory Booker for the funding request as well as report language to be included in the Senate appropriations report. No additional funding was recommended in the Senate bill, but the report includes a statement encouraging CDC to continue and expand its SCD surveillance program to better understand and address long term health outcomes, complications, and unmet health care access and to initiate a public health awareness campaign for people with SCD and sickle cell trait (SCT).
In June, ASH, co-sponsored a Congressional Briefing on SCD and gene editing on Capitol Hill. The briefing was hosted by the House Research & Development Caucus and the Congressional Sickle Cell Disease Caucus; and the other co-sponsoring organizations included the American Society for Blood and Marrow Transplantation (ASBMT), American Society of Gene & Cell Therapy, National Marrow Donor Program/Be The Match (NMDP), Pediatric Hospital Sickle Cell Collaborative, and Sickle Cell Disease Association of America. The standing room only event educated members of Congress and their staff on scientific advances that could potentially cure this devastating disease. Speakers included ASH members, Linda Burns, MD, and Dan Bauer, MD, PhD, who discussed the progress in SCD research, as well as curative options such as bone marrow transplantation and gene editing. Constance Benson, a former SCD patient and a transplant recipient, concluded the briefing with an inspiring talk about her personal experiences living with the disease and choosing transplant as a cure. A recording of the briefing can be found by visiting ASH's Facebook page.
In September, ASH Officers and participants of the ASH Advocacy Leadership Institute visited more than 35 congressional offices to encourage congressional offices to cosponsor H.R. 2410, the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act, and similar legislation that is expected to be introduced in the Senate seeking to enhance federal government activities in SCD research, training, and services. ASH staff continues to work closely with congressional staff in Senate offices which have expressed interest in introducing this legislation.
ASH also worked with key congressional offices in September to draft legislative resolutions to celebrate National Sickle Cell Awareness Month. The U.S. Senate unanimously passed Senate Resolution 273 to designate September as Sickle Cell Awareness Month and highlight the urgency of finding a widely accessible cure, identifying early detection methods, and ensuring those living with the disease are aware of available resources. The U.S. House of Representatives introduced House Resolution 539 to encourage SCT research, surveillance, and awareness. ASH sent letters to Capitol Hill in support of both congressional resolutions. Additionally, the Congressional Black Caucus Health Braintrust, the authority on African American and minority health on Capitol Hill, featured SCD and ASH’s multifaceted SCD initiative in the Fall Edition of The Broadsheet, a mini-report on minority health that was disseminated in print and online to members of the Congressional Black Caucus and other interested policymakers.
In early November, ASH sponsored the Coalition for Health Funding’s (CHF) second Annual Public Health Fair and exhibited information on SCD at an ASH booth. ASH member and SCD expert Deepika Darbari, MD, from Children's National Health System, joined ASH staff at the table to help raise awareness for SCD and disseminate educational materials about the disease.
ASH continued 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, including the following activities.
In April, ASH staff met with the Center for Medicare and Medicaid Innovation to discuss a delivery and payment model for SCD.
ASH was contacted by multiple providers reporting denial of coverage for apheresis for SCD patients. Only one Medicare carrier is denying these claims. The National Coverage Determination (NCD) for Apheresis (110.14), published in 1992, only lists 13 specific indications; however, it does note that “This may not be an exhaustive list of all applicable Medicare benefit categories for this item or service.” ASH staff arranged for a presentation on this issue at the 2017 Carrier Advisory Committee meeting in July and continues to actively work with Medicare carriers to try to resolve the issue.
In July, ASH submitted a letter encouraging the Virginia Medicaid Program to reconsider its denial of bone marrow transplantation (BMT) authorization requests for individuals with SCD participating in the Blood and Marrow Transplant Clinical Trials Network. The Virginia Medicaid Program’s response indicated that the coverage is not related to the fact that BMT is “investigational or experimental,” but that their policy only covers BMT for individuals over the age of 21 for certain indications (lymphoma, breast cancer, leukemia, and myeloma). ASH staff is exploring potential next steps towards resolving this issue. ASH is working with ASBMT, NMDP, and other partners to address this issue at the state and federal levels.
On September 5, 2017, ASH hosted a webinar on appropriate coding practices for individuals with SCD, including how to effectively use Current Procedural Terminology (CPT) codes and the Diagnosis-Related Group (DRG) codes. There were over 100 participants and the program ended with a robust question and answer session. The recording of the webinar is available on ASH OnDemand.

SCD-Focused Advocacy With Funding and Stakeholder Organizations

ASH continues to advocate with funding organizations and other stakeholders to foster resources for SCD and SCT-related research and care. The following outlines the Society's recent action.

In late September 2017, ASH submitted a nomination for Amanda Brandow, DO, MS, (Medical College of Wisconsin) to serve on the United States Department of Health and Human Services (HHS) new Pain Management Best Practices Inter-Agency Task Force. The purpose of the Task Force is to determine whether there are gaps or inconsistencies in pain management among federal agencies, propose recommendations to address these gaps, and develop a strategy for disseminating pain management best practices. The Task Force has the potential to impact the management of pain in patients with a broad spectrum of hematologic conditions (including hemophilia and blood cancers), but is particularly relevant to the SCD community. HHS has not yet announced the Task Force members or the timeline for when the Task Force activities are to begin.
ASH submitted comments to the National Institutes of Health (NIH) on hematology-related pediatric research that should be included in the NIH's All of Us research program. ASH’s recommendations include: (1) improving genomic profiling and annotation of genomic variants; (2) elucidating the impact of epigenetic modifications on disease progression; (3) evaluating promising biomarker candidates for prevention and treatment of disease; (4) elucidating the specific impact of pain on children and their responses to interventions; and (5) permitting assessment of the clinical use of these data. ASH’s recommendations included a number of SCD-focused examples and were developed with input from various scientific committee members, building on the Society’s research agenda and sickle cell disease research priorities.