Today, the House of Representatives passed budget reconciliation legislation that includes harmful healthcare policies that will cause 8.6 million people to lose Medicaid coverage and over 13 million people total to lose health insurance. the legislation represents the largest cut to Medicaid ever, a lifeline for millions in the rare disease community, providing benefits often unavailable through other payers.
For more information about what was included in the bill, please read more here.
The rare disease community utilizes Medicaid for diagnoses, treatments, durable medical equipment, home healthcare, and caregiver services for highly complex, chronic health conditions. The changes included in the House-passed One Big, Beautiful Bill (H.R. 1) will result in decreased funding to states, increased administrative costs, and will force states to make difficult choices to balance their budgets, likely leading to optional benefits and waiver program reductions.
The work reporting requirements included in the legislation will also result in people in the rare disease community losing Medicaid coverage. Despite the inclusion of some exemptions, experience shows that overly complicated reporting requirements, including how frequently verifications are conducted and how difficult it will be to prove eligibility for an exemption, will result in eligible patients and caregivers losing coverage.
Compounding the potential for coverage and benefit losses, H.R. 1 implements new administrative burden on states and patients and families while also repealing funds and new processes that were intended to help streamline enrollment and support a more efficient process for states, insurance exchanges, and individuals.
While the bill has now passed the House of Representatives, it is not yet finalized. Now more than ever, YOUR voices need to be heard before these devastating cuts to Medicaid become enacted.
The bill will now be transferred to the Senate, where Senators will have the chance to weigh in and make changes. The House passing the legislation was a concerning step, however there is still work that can be done. There is still hope. Your Senators need to hear your stories. Tell them that passing this bill will have dramatic consequences for the rare disease community.
Tell your Senator to reject policies that will terminate healthcare and harm rare disease patients and families here. If you or a family member has benefited from Medicaid, continue to share your Medicaid stories with your Senators using this action alert here. Your voices are being heard and there is still time to make a difference!
