A Devastating New Roadblock to Rare Epilepsy Care and Cures

H.R.1 also known as the “One Beautiful Bill Act” just passed by Congress and signed by the President, will bring about major changes to U.S. health care. It raises devastating risks for rare epilepsy families and the millions of Americans who rely on Medicaid for their care.

The legislation is primarily focused on lowering individual tax rates and funding diverse programs in border security, immigration enforcement, defense, and energy, which would increase the debt limit by $5 trillion. The cost of those policies are partially “offset” (or “paid for”) by limiting eligibility and federal funding for Medicaid with a $1 trillion cut as well as a $300 billion cut to food assistance.

According to estimates, these massive cuts mandated for health care spending will result in at least 11.8 to 17 million people losing health insurance by 2034. Other dramatic reductions in federal health program funding, include cuts to the NIH, the FDA and CDC. This further undermines essential research and programs that accelerate new treatments through pre-clinical research. Such research offers hope for families in new treatments that do not just treat symptoms, but address the underlying cause of the more than 10,000 rare diseases and nearly 1000 identified genetic mutations associated with severe, rare epilepsies.

Collectively these measures amount to a comprehensive reorientation of federal health policy prioritizing cost-cutting over coverage, access, and global leadership in health research.

More than $1 trillion of the mandated cuts would come from Medicaid, which is a joint federal and state health insurance program for disabled and low-income Americans. The funding cuts go beyond insurance coverage:

The loss of this funding could gut many rural hospitals, which disproportionately rely on federal spending.
Policy changes mean many Medicaid enrollees, particularly for families of 4 whose income is between 100 and 138% of the federal poverty level ($32,150 and $42,760 annual income) can expect to pay more out-of-pocket for appointments.
New regulations would dramatically limit access to Affordable Care Act (ACA) marketplace coverage and expiring enhanced ACA tax credits. In 2024, 21.3 million Americans relied on the ACA for health insurance. ACA coverage will become both harder to get and keep.
The new restrictions could cause at least hundreds of thousands of immigrants who are lawfully present — including asylum-seekers, victims of trafficking, and refugees — to lose their ACA marketplace coverage by cutting off the subsidies that make premiums affordable.
The new cap on states’ ability to fund health programs through taxes on providers would threaten a critical funding stream for states to support rural hospitals and discretionary (i.e. allowed but not mandated) Medicaid programs like Early Intervention programs.
Similarly, states will be forced to reexamine waiver programs, home healthcare, and caregiver services for highly complex, chronic health conditions that enable critical coverage for children’s complex health care needs. This will leave many families unable to continue working or keep their children at home with them, where they are best cared for.

Collectively, these measures represent a reversal of many of the health coverage gains made over the last 15 years which made it easier for millions of people to access health care and reduced the U.S. uninsured rate to record lows. And these programs have provided a critical lifeline to families economically devastated by catastrophic conditions.

The collection of these extreme, devastating cuts and policy changes will create enormous pressure on states to reduce coverage. It will reverse the life-saving impacts of the Medicaid program and result in many unnecessary and premature deaths.

The cuts and changes to Medicaid, including but not limited to work reporting requirements, increased eligibility checks, cost-sharing requirements, and limits on provider taxes that fund home- and community-based services will have direct effects on the one in 26 Americans struggling with epilepsy – and particularly those with rare and catastrophic epilepsies. This bill will impede the accessibility and affordability of healthcare and critical long-term services and supports. In addition, dramatic cuts are now mandated in essential federal infrastructure at NIH, FDA, and CDC. These funding cuts compound the negative impact of the Medicaid changes on rare epilepsy families by undermining the fundamental hope of families for accelerated progress toward new disease-modifying treatments just over the horizon.

This legislation, from considering solely the impacts on health care cuts, might be better known as “Millions Medically Marginalized” – and our community needs to fight back. Over the coming YEARS, our community will have to organize a groundswell of action and education about the devastating impacts of these changes and advocate for access to affordable, comprehensive healthcare coverage for the entire epilepsy community.

DEE-P Connections is committed to working with families, providers, researchers, and biotech companies to reverse these changes and rebuild essential programs to support the health and survival of the one in ten Americans devastated by a rare and often catastrophic condition.

— JayEtta Hecker (Co-Founder and Board Chair of Decodificando las epilepsias del desarrollo)