High-cost therapies like cell and gene therapies could transform care for Medicaid beneficiaries with serious conditions, but their upfront prices — often $500,000 to $5 million per patient — do not fit a financing system built around predictable, chronic-care spending.

The pressure will only grow as the pipeline expands, eligible populations broaden and treatments become easier to administer. Medicaid’s fixed budgets, enrollment churn and limited data infrastructure make it hard to pay for these therapies at scale or capture their long-term value.

Outcomes-based payment and Centers for Medicare & Medicaid Services (CMS) models are important near-term tools, but they are not enough. Durable access will require bolder federal financing solutions such as reinsurance, risk pooling or a dedicated funding stream for transformative therapies.

Listen to the full conversation on Spotify, Apple Podcasts, or wherever you get your podcasts to hear Patti Boozang, Terry Cothran and Ross Margulies unpack the promise of curative therapies, the limits of Medicaid’s current financing model and the policy choices needed to make access real.

Americans are rapidly aging, which is accelerating the demand for the long-term services and supports (LTSS) necessary to their care, as well as the care of a diverse range of children and adults with disabilities. Medicaid is the primary payer for LTSS. Since the early 1980s, that coverage has included home and community-based services (HCBS), which have proven better for health, less expensive and what most people prefer over institutional care. HCBS now make up almost two-thirds of long-term services and support spending, double the rate in 2001.

Because HCBS are an optional benefit under Medicaid, states facing fiscal crises can limit access, including through enrollment caps and waiting lists. Today more than 600,000 people are waiting for care across 41 states.

With states facing nearly $1 trillion in federal Medicaid funding cuts over the next decade from H.R. 1 and a drumbeat of recent statements from federal leaders questioning the integrity and purpose of HCBS, the fragile infrastructure that keeps people out of nursing homes is at risk — bringing greater urgency to the imperative for change.

The scale of federal retrenchment is no longer theoretical. In Massachusetts alone, the state is bracing for an estimated $3.5 billion annual loss in federal Medicaid funding once H.R. 1 is fully implemented, against a total Medicaid budget of over $20 billion. Even with aggressive mitigation, the state could still see about 300,000 residents lose coverage.

The idea that H.R. 1 simply “right-sizes” Medicaid while protecting the most vulnerable is already breaking down. Children, pregnant women, and people with disabilities are already feeling the effects through fear-driven disenrollment, mounting pressure on rural maternity care, and tighter scrutiny of home- and community-based services.

States cannot replace lost federal dollars, but they are not standing still. This episode of The 80 Million Podcast shows how state leaders are investing in trusted, community-based outreach to keep eligible people covered, tackling affordability, shoring up providers and leading through the maelstrom.