The Affordable Care Act (ACA) fundamentally changed American health care — expanding coverage, establishing consumer protections that are now broadly expected, and helping cement the idea that access to health care is a basic human need rather than a privilege tied to health status, gender or income.

The next challenge is no longer just whether people have coverage, but whether they can afford to get it, keep it and use it. Rising premiums, deductibles, cost-sharing and administrative barriers are straining people across Medicaid, the ACA Marketplaces, Medicare and employer-sponsored insurance.

Fixing American health care will require looking across the whole system: reducing friction for patients and providers, rebuilding a durable federal floor for coverage and access, resisting efforts to retreat to a pre-ACA coverage framework, supporting state innovation, and accepting that meaningful reform will require mutual sacrifice across the health care ecosystem.

The challenge before us is creating a health care system that is affordable, usable and sustainable for patients, providers, employers and taxpayers alike — wherever they live and whatever their income, gender, race or age. We have a great deal of work to do.

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.