The Lupus Foundation of America responded to the Centers for Medicare & Medicaid Services (CMS) recently issued regulations that will govern the implementation of Medicaid cuts enacted last year, which are set to take effect in most states on January 1, 2027.

Approximately a quarter of people living with lupus in the U.S. rely on Medicaid for health coverage. The new policies introduce significant administrative and eligibility requirements that may create additional barriers to coverage for people with lupus, whose disease course can be unpredictable and debilitating. These changes could result in many patients losing Medicaid coverage and, consequently, access to necessary medical care and treatments.

The Foundation’s comments urged CMS to revise the regulations to make it easier for people with lupus to verify their Medicaid eligibility and obtain exceptions to new community engagement requirements, which require individuals to meet minimum monthly work or volunteer hours. These requirements may be particularly challenging for people with lupus whose symptoms and ability to work can fluctuate over time.

For people living with lupus, symptoms can change from day to day. A person may be able to work, go to school, or participate in other activities one week, only to experience a lupus flare the next that makes those same activities much harder. The unpredictable nature of the disease is important to consider as new Medicaid community engagement requirements are implemented.

The Foundation urged CMS to recognize the realities that people with lupus face and to make sure that administrative requirements do not unintentionally put their health coverage at risk. For someone living with lupus, the challenge may not be whether they can work or participate in a qualifying activity. It may be whether they can do so consistently—and whether they can keep up with the paperwork, reporting, and verification requirements when their health changes. That distinction matters.

For people with lupus, maintaining access to health care is especially important. Medicaid coverage can help people access medications, specialist care, laboratory monitoring, and other services needed to manage a complex and unpredictable disease.

The Foundation will continue working with Congress to advocate for reversal of the Medicaid cuts and engaging in the regulatory process at the federal and state levels to help minimize the impact of these changes on people living with lupus.

Read the Full Comment Letter

The Lupus Foundation of America advocates at every level of government to support people living with lupus and ensure that their voices are heard by federal and state policymakers on Capitol Hill, in Washington, DC, and in state capitals across the country. Learn more about our lupus advocacy efforts here.