CONCERNS AROUND CHANGES TO MEDICAID PROGRAM

On May 22, 2025, the U.S. House passed a sweeping budget package that includes significant changes to Medicaid. The Huntington’s Disease Society of America has concerns about how these changes will affect access to care for people living with Huntington’s disease (HD) and their families. Outlined below are our major concerns.

Work Requirements

Huntington’s disease (HD) strikes in the prime of people’s lives – during their highest income-earning years. Because of the disabling symptoms, people with HD who are no longer able to work often rely on Social Security Disability Income to support their families. However, on average, it takes 29 months from the start date of a person’s disability – generally when the person with HD stops working – to the Medicare start date with an SSDI approval. During this 29-month gap, people are not able to work and rely on Medicaid benefits to provide medical services, prescriptions, or home/community supports. 

Administrative Burden

New requirements increase the administrative burden and red tape placed on Medicaid enrollees. These policies will very likely endanger coverage and inhibit access to care. Requiring states to conduct more frequent Medicaid eligibility determinations will likely disrupt coverage for HD families and negatively affect health outcomes. 

When eligibility checks occur more often, enrollees are at greater risk of experiencing a lapse in coverage caused by administrative hurdles rather than actual changes in eligibility. In addition, the new regulations only provide a 30-day look back. If an individual loses their coverage because they did not recertify before their eligibility date expired, they are responsible for medical expenses that fall outside the 30-day look back.

Home Equity Limit

Under current law, an individual is not eligible for Medicaid long-term services and supports if their financial assets reach a certain threshold often determined by the state. Changes in the law would no longer permit states to set the home equity limit and would cap the limit for home equity and remain eligible for long-term care services and supports at $1 million.

Cost Sharing

Imposing cost-sharing, up to $35 per medical visit on Medicaid expansion enrollees with family incomes above 100% of the FPL often leads to delayed or avoided care.