Bleeding Disorders Organizations Partner to Prepare for Coming Medicaid Changes
Bleeding Disorders Organizations Partner to Prepare for Coming Medicaid Changes
Medicaid work reporting requirements, enacted last year as part of HR 1 (the One Big Beautiful Bill Act), will soon go into effect. The national bleeding disorders organizations want to update you on what we are doing to prevent coverage losses – and outline our plans to provide the community with information and tools that can help you answer questions from concerned members of our community.
Background. Under the new law, many adults who have or who are applying for coverage under the Medicaid expansion pathway will have to meet work requirements (also known as “community engagement” requirements) and more frequent eligibility determinations starting in 2027 or earlier. While some details remain fluid, we know that these requirements will impact many people living with bleeding disorders as well as the hemophilia treatment centers (HTCs) where they receive care. The new work requirements will create administrative barriers – red tape – that will unfortunately jeopardize coverage and continuity of care for many, even those who are working or who qualify for exemptions.
The national bleeding disorders organizations are coordinating our efforts to keep you informed and to safeguard community members against needless coverage losses.
We continue to advocate with federal and state policymakers that bleeding disorders are “serious or complex medical conditions” within the meaning of HR 1, and that affected individuals should therefore not be subject to the new requirements.
We continue to advocate, too, for states to maximize their uptake of optional exceptions to the work requirements (e.g., providing exceptions for people who have had to travel out of state for treatment during the relevant lookback period).
We will offer webinars for various audiences (patients and families, chapter staff, HTC treaters) over the coming months to provide updates and information as states move closer to implementation of the new requirements.
We are developing toolkits and other resources that you can adapt and use in outreach to your respective communities.
The bleeding disorders community faces many coverage challenges in 2026: Medicaid work requirements, but also high insurance premiums, narrow formularies, copay accumulators and maximizers, and much more. The national organizations stand united and with you in defending coverage and timely and uninterrupted access to care for our whole community.