Medicaid Changes May Cause ‘Avoidable’ Harm For Rare Diseases Patients—NORD
· Yahoo Sports
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.”
Visit catcrossgame.com for more information.
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.
This means that the looming federal reforms, which not only include work requirements but also funding changes, risk affecting coverage for some of the country’s most medically vulnerable populations.
What Did NORD Recommend?
In its recommendation, NORD said that it expects “a seismic cascade of state legislative and regulatory activity” after the Centers for Medicare and Medicaid Services (CMS) release additional guidance to states by June 1 regarding the Medicaid work requirements.
States will have to decide how exemptions are defined and operationalized, what documentation is required to demonstrate eligibility or exemption, how frequency compliance is verified, as well as a host of other administrative requirements.
NORD stressed that these verification processes must be “reasonable” and not so “burdensome as to effectively deny the protection the law requires.”
It therefore advised that states use the full implementation timeline available, rather than seeking early implementation before the January 1, 2027 deadline, to properly test systems, plan and ensure readiness.
It also suggested that states avoid “unnecessary complexity” and limit verification frequency to the federal minimums—which is one month prior to application and once every six months thereafter for enrolled individuals—and to keep exemption definitions broad as “people across many conditions with medical complexity face similar barriers, and the broadest interpretations will serve them all.”
NORD also warned of the potential impact of the changes on caregivers. Among the estimated 53 million family caregivers in the country, 61 percent are simultaneously employed. Many report having to go into work late, leave early, take time off or even take a leave of absence because of caregiving responsibilities.
“Current exemption frameworks do not reflect the reality of adult caregiving particularly for adolescents with serious conditions and for adults who have not received formal disability determinations,” NORD warned.
What Happens Next
States are expected to begin implementing many Medicaid changes ahead of the January 1, 2027 deadline for work requirements, with significant discretion in how they design eligibility systems and exemptions.
This will likely put pressure on state lawmakers and regulators to strike a balance between federal mandates and patient protections—decisions that could vary widely across the country.
Related Articles
- Medicare Would Change to Expand Options for Millions Under New Bill
- Providers Face 'Paradigm Shift' As Patients Turn to AI Chatbots, Apps
- Is Ambient AI Harder to Build for RNs Than MDs? Abridge CEO Says 'Yes'