On June 1st, 2026, the federal Centers for Medicare and Medicaid Services (CMS) released its long-awaited rule providing guidance to state Medicaid programs on how to implement the Medicaid work reporting requirements and eligibility limits enacted last year as part of HR 1, the One Big Beautiful Bill Act.
Exemption for “Serious or Complex Medical Conditions” Narrowed Under New Policy
HR 1 mandates that many adults seeking to get or keep Medicaid coverage under certain eligibility pathways will have to meet new “community engagement” requirements (also known as work requirements) starting in 2027. Congress, while creating this mandate, also sought to protect medically vulnerable populations against coverage loss by excluding or exempting them from the new work requirements. One statutory exclusion (for “medical frailty”) encompasses people with “serious or complex medical conditions.” The National Bleeding Disorders Foundation (NBDF) and partners have for months advocated with CMS and state officials that bleeding disorders (including hemophilia, von Willebrand disease, rare factor deficiencies, and other inheritable disorders) are “serious or complex medical conditions” within the meaning of HR 1, and thus that affected people should be categorically exempt (“excluded”) from the new requirements.
The rule released on June 1, however, goes beyond the statutory language. CMS’s rule states that having a serious or complex medical condition, such as a bleeding disorder, will not automatically qualify an individual for an exclusion. Instead, exclusions will be based on the severity of someone’s medical condition and the impact the condition has on one’s ability to work. CMS acknowledges that “it would be reasonable for States to consider certain conditions as serious or complex,” including hemophilia and sickle cell disease, but only “when such conditions significantly impair an individual’s ability to comply with the community engagement requirement.”
Why Advocates Are Concerned About Coverage Losses
Analysts expect that the new work requirements will cause widespread Medicaid coverage losses, stemming in large part from administrative barriers rather than enrollees’ failure to meet the underlying requirements. Implementing this policy more strictly than the statute greatly increases the likelihood of coverage losses for people living with bleeding disorders such as hemophilia, and other serious or complex medical conditions. Loss of Medicaid coverage would create barriers to care and treatment and expose people with bleeding disorders to substantial risk of preventable bleeding, permanent injury and disability, or even death. CMS’s rule thus contradicts Congress’s express intention of protecting vulnerable individuals with serious or complex medical conditions against coverage losses.
NBDF Continues to Advocate for People with Bleeding Disorders
NBDF has joined a patient group statement expressing deep concern over the rule’s failure to protect people with serious or complex health conditions. NBDF will submit formal comments on the rule and will continue to work with partners to advocate on the federal and state level so that people with bleeding disorders can maintain coverage. We will keep the community posted on further developments.
