The National Scleroderma Foundation is gearing up for a busy year for our community’s legislative advocates. There are several federal health policy changes anticipated in 2026 that may impact those with chronic illnesses, including scleroderma. Below is an overview that explores how these changes could affect insurance coverage, drug costs, and access to care for beneficiaries.
Legislative Landscape Overview
- Enhanced premium tax credits for the Affordable Care Act are set to expire in December 2025, with no immediate plan from Congress to extend them. Without action, premiums could rise by 114% on average, and 3.8 million people may lose coverage annually between 2026 and 2034.
- Medicare will launch historic drug pricing reforms in 2026. These reforms will reduce out-of-pocket costs for 10 high-use drugs by up to 79%, with more to follow in 2027. However, a new orphan drug exclusion is projected to increase beneficiary costs by approximately $5 billion due to fewer drugs qualifying for negotiation. Orphan drugs are medications that tend to be developed to treat rare diseases, often with government incentives to encourage production due to the smaller patient populations.
- Medicare Advantage plans will face major reforms:
- Insulin co-pays will be permanently capped at $35/month
- Recommended adult vaccines will be free
- Part D out-of-pocket caps and deductibles will rise modestly.
- Centers for Medicare and Medicaid Services will launch new consumer protections and end the Value-Based Insurance Design pilot, which will affect access to supplemental benefits.
- State-based Affordable Care Act Marketplaces are expanding: Over 20 states and Washington, D.C. will operate their own marketplace exchanges in 2026, providing them with greater flexibility in outreach and plan design—although transitions may result in administrative disruptions.
What Do These Changes Mean for You?
Patients may face steep premium hikes, if enhanced Affordable Care Act premium credits are allowed to expire. There are also significant concerns about increased costs associated with orphan drugs, which may especially affect our community.
Healthcare providers may see increases to uncompensated care costs, projected at $7.7B in 2026 alone.
What We Are Watching
We will continue to monitor and report changes in upcoming appropriation bills, and if any new healthcare packages/relevant legislation will be considered. As always, if you would like to learn more about the Foundation’s advocacy efforts, please visit us online at scleroderma.org/advocacy, or email us at advocacy@scleroderma.org.