New Medicaid Work Rules Could Cause Patients to Lose Coverage, Rare Disease Advocates Warn

The disability and rare disease communities have been on high alert since last July, when President Trump signed the Federal Budget Reconciliation Bill into law. The bill’s provision requiring Medicaid recipients to meet certain work requirements in order to maintain their benefits has sparked widespread concern among advocates for patients with rare diseases.

As of January 1, 2027, those living in 40 states that have expanded Medicaid will be expected to work, volunteer, or undergo job training for at least 80 hours per month. Exemptions are available for individuals who are unable to work due to disability or other circumstances, but rare disease advocates worry that the guidance provided by the Trump administration is too vague and that the implementation timeline is far too short.

Patients with rare diseases will be particularly vulnerable under these new rules. Many rare diseases do not have a unique ICD-10 diagnostic code, making it difficult for healthcare providers to accurately identify affected individuals. This could lead to confusion and misidentification by automated systems used to track Medicaid eligibility. As a result, patients who are already struggling to manage their condition will face added stress in navigating complex bureaucratic procedures.

For those with episodic diseases or undiagnosed conditions, the risk of losing coverage will be constant. Caregivers managing medically complex children or adults will also face significant challenges in keeping their loved ones insured. The National Organization for Rare Disorders (NORD) has been vocal about its concerns, warning that many patients are unaware of the implications of the new rules.

“People who are not advocates are just trying to survive,” said NORD CEO Pamela Gavin. “They’re living day to day and struggling with a whole host of issues.” Many individuals may not even realize they rely on Medicaid, as the program often has different names in various states. As KFF analysis has shown, disabled individuals account for nearly $21,000 of Medicaid spend per person on average – a staggering three times the average American’s medical expenses.

The consequences of losing Medicaid coverage will be severe for rare disease patients. The loss of this critical safety net could have devastating effects on patient health and well-being. As policymakers consider these changes, they must prioritize patient needs over administrative efficiency. The real test of the Trump administration’s commitment to healthcare reform will come in the years ahead, as Medicaid recipients face the daunting task of navigating new work requirements.

The stakes are high for rare disease patients who depend on Medicaid for their very survival. Will policymakers choose to protect them from harm or prioritize administrative expediency? Only time will tell, but one thing is certain: the clock is ticking, and the future of these vulnerable populations hangs in the balance.