Medicaid Changes May Cause ‘Avoidable’ Harm For Rare Diseases Patients—NORD
NORD said public programs such as Medicaid and Medicare cover more than 70 percent of adult rare disease hospital stays.
The work requirements that are set to come in for Medicaid enrollees could cause “avoidable” harm to the 30 million Americans living with rare diseases, according to the National Organization for Rare Disorders (NORD). In guidance released on Thursday, NORD said that “without thoughtful design, eligible individuals will lose coverage, not because they are ineligible, but because the system fails to identify individuals with rare disease and accommodate their healthcare needs. ” The organization said that it is offering its recommendations in the hope of supporting state implementation so that “avoidable coverage loss,” and resulting harm to patients, is prevented.
The Medicaid work requirements, set to come in from January 2027, will require able-bodied Medicaid recipients aged 19 to 65 to do 80 hours of verified community engagement per month to maintain their coverage. However, there has been widespread concern that the requirements will simply push eligible enrollees off the program because of the complex administrative burden this entails . 92 percent of Medicaid recipients are either working, or have qualified exemptions, leaving only 8 percent outside of those categories, NORD said, but experts have warned millions could still lose their coverage .
With the midterm elections coming up later this year, Medicaid has increasingly entered the spotlight , as lawmakers seek ways to rein in federal spending while also maintaining coverage for tens of millions of Americans. A stock image of a sick child in a hospital room with an oxygen tube and IV line. Medicaid Changes To Impact ‘Those With The Fewest Options’ Medicaid is a critical lifeline for people with rare conditions , who often require specialized care, costly treatments, and access to a limited number of experts nationwide .
NORD estimates that rare diseases affect nearly 1 in 10 Americans, with public programs such as Medicaid and Medicare covering more than 70 percent of adult rare disease hospital stays. In order to access knowledgeable care, rare disease patients often have to travel for hundreds of miles, shoulder large out-of-state-costs for appointments and navigate complex barriers, NORD. The burden of Medicaid changes therefore “falls most heavily on those with the fewest options,” NORD said.
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