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.
