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Policy & Legislation
The sickle cell community has historically been underrepresented in policy and legislation.
Sick Cells is committed to educating the SCD community on policy advocacy
and incorporating the SCD voice into legislation. We partner with other sickle cell organizations and patient advocacy group to advocate for policies that allow people with SCD to access the high-quality, specialized care we need.
The American Society of Hematology (ASH) and the Sickle Cell Disease Association of America, Inc. (SCDAA) led a sign-on letter to Congressional leaders, including Speaker Pelosi, Leader McConnell, Leader McCarthy, and Leader Schumer, to encourage the leaders to include an amendment to the COVID-19 stimulus bill to improve care for individuals with SCD. This request was for the stimulus bill to authorize the Centers for Medicare and Medicaid Services (CMS) to quickly develop a program for Medicare/Medicaid dual eligible and Medicaid beneficiaries to improve access to comprehensive outpatient care for individuals with SCD.
The ASP Coalition represents a broad cross-section of US health care providers and patient advocacy organizations. These entities are committed to advancing life-saving innovation in the US. Sick Cells is active with this coalition because nearly 13 percent of the sickle cell population use Medicare as part of their benefits.
Congress passed sickle cell disease legislation in 2018. House Bill HR2410, the Sickle Cell Disease Treatment Act of 2017, was co-sponsored by Representatives Burgess and Davis. It passed the House in February while Sick Cells and 44 other sickle cell advocates were in Washington, DC. In February, Senators Scott and Booker introduced the Senate companion bill S.2465 the Sickle Cell Disease Treatment Act of 2018.
In 2018, Sick Cells worked with SCD volunteers to recruit and prepare over 40 SCD patient advocates who came to Washington, DC and lobbied for rare disease and sickle cell disease legislation. Sick Cells became active in rare disease week during 2018.
The IL Fair Care Coalition is a group of patient advocacy organizations that work in a coalition to ensure access to medication for Illinoisans with disabilities. The coalition is led by the US Pain Foundation and worked to pass House Bill 4146. The bill ensures that individuals receive prescription drug coverage by limiting mid-year drug formulary changes by insurers.
Proposals to phase out Medicaid expansion and implement per capita caps or block grants, like those included in the American Health Care Act (AHCA), HR 1628, threaten the ability of Medicaid to provide critical health care services to many of our most vulnerable citizens. These proposals aim to achieve billions of dollars in cost savings at the expense of tens of millions of patients and consumers who rely on Medicaid for life-sustaining care. We vehemently oppose converting Medicaid’s financing into a capped funding structure, as well as phasing out Medicaid expansion, and will not accept any policy that cuts costs at the expense of patient and consumer access to care.
As you know, Medicare Part B is vital to maintaining the health of seniors and individuals with disabilities. Not only does the program cover routine medical care provided in a doctor’s office, it also covers medications administered in an outpatient setting. These medications are administered to some of the most vulnerable patients enrolled in Medicare since they typically treat serious conditions including cancer, macular degeneration, hypertension, rheumatoid arthritis, mental illness, Crohn’s disease, ulcerative colitis, and primary immunodeficiency diseases. These medications are essential for the seniors who use them, and reflect a very small percentage of Medicare spending, just three percent.