A new Medicaid rule could unfairly cost people with rheumatologic diseases their access to healthcare, while also creating unnecessary administrative burdens for clinicians, medical groups said.

At issue are standards for judging medical exemptions set in an interim final rule that the Centers for Medicare & Medicaid Services (CMS) published in June.

The rule is intended to guide many states that face a January 1, 2027, deadline to implement a major shift in Medicaid policy. States that have expanded Medicaid coverage for adults in recent years have to check whether certain people aged 19-64 years comply with “community engagement” requirements. These can be met by working, volunteering, or participating in education and training programs for 80 h/mo.

Groups including the American College of Rheumatology (ACR) and the Lupus Foundation of America say the current CMS approach to setting frailty standards risks the health of people with autoimmune conditions that are prone to fluctuations.

“In rheumatic disease, frailty is dynamic and responsive to treatment. Defining and applying it as a stable eligibility category, subject to repeatable reverification at least every 12 months leaves the exemption dependent on treatment response at the designated point in time, rather than by any stable measure of work capacity,” wrote William F. Harvey, MD, president of the ACR, in a July comment to CMS.

Part of the challenge for rheumatologists with the new Medicaid requirements is the breadth of their field, where they may see people with rheumatoid arthritis, systemic lupus erythematosus (SLE), or a number of less common conditions, said Amanda Myers, MD, a rheumatologist based in Evanston, Illinois, and chair of the ACR’s Government Affairs Committee.

Given how these conditions also may wax and wane in ways that other diseases don’t, CMS should consider more lasting exemptions to the work requirements, Myers told Medscape Medical News. “Our patients may be healthy today and then have a flare tomorrow and may be frail tomorrow,” she said. “Their frailty actually could change, which is why I would actually argue that if someone has certain diagnoses like rheumatoid arthritis or lupus, that they should just be able to qualify for an exemption based on their disease.”

Congress created the mandate for work requirements as part of last year’s major tax bill. Federal lawmakers included with this mandate provisions allowing for exemptions from the community-engagement requirements for people who are medically frail.

In the rule released in June, CMS explained its decision to push states to go beyond looking at medical diagnoses in allowing exemptions. The agency instead wants to make frailty exemptions dependent on judgments about whether a person can work or do other activities for 80 h/mo.

To rely solely “on diagnosis or condition would risk sweeping in individuals whose conditions do not significantly impair their functional capacity, meaning that they are able to perform 80 h/mo of qualifying activities,” CMS said in the rule.

CMS contends the law instead requires “consideration of the severity of an individual’s condition as relevant to whether that individual is capable of meeting the community engagement requirement.”

Lack of Tools to Determine Medical Frailty

ACR and other physicians’ groups have asked CMS to reconsider this approach for several reasons, one of which is the lack of tools for making such a judgment about patients.

“Determining a patient’s eligibility for coverage based on ability to work is a task that treating rheumatologists are not positioned to make and should not be asked to own,” Harvey wrote.

They should instead be allowed to continue focusing on diagnosis, treatment, and monitoring.

“A determination of work capacity, especially one that governs coverage, calls for a distinct and dedicated assessment process with appropriate expertise, and it raises unresolved questions of clinician liability where a required attestation about a future functional capacity is inherently uncertain,” Harvey wrote.

Instruments commonly used in rheumatology, such as the PROMIS system and the Health Assessment Questionnaire-Disability Index, assess the progression of disease and general functional status.

“None has been validated as a predictor of occupational capacity at a defined monthly hour threshold,” Harvey wrote in the comment to CMS.

In this comment, the ACR also noted that there’s wide variation in the results seen in existing screening approaches, citing published research.

For example, authors of a study of four screening approaches done with people who had rheumatoid arthritis reported finding the proportion classified as frail ranged from 15% to 36% depending solely on the instrument used.

A similar study cited by the ACR looked at three different screening tools for SLE and found percentages of participants identified as frail varied among the measures, from 10.8% to 45.9%.

The lead author of this study, Patricia Katz, PhD, now professor emerita of medicine and health policy at the University of California, San Francisco, is a noted researcher in the field of patient-centered health outcome measurement. She served on a National Academies of Sciences, Engineering, and Medicine panel that in 2022 advised the Social Security Administration about its approach to reviewing disability claims for certain immune disorders, such as SLE and rheumatoid arthritis.

In an interview with Medscape Medical News, Katz spoke of efforts to develop frailty measures for rheumatologic conditions as a still-evolving field, while also citing other challenges in making the assessments that CMS envisions.

“The state of the art is, let’s say, in its development,” Katz said.

And many of these measures include data that likely won’t be readily available for rheumatologists, such as gait-speed tests or strength tests, she said.

“Some of them have questionnaire data that might be able to be integrated. Some of them are really complicated to calculate, so it’s just not feasible” to expect rheumatologists to make these determinations, she said.

Suggestions to Reduce Harm and Administrative Burden

Given the expected patient harm and clinician administrative burden from the current CMS approach, the ACR asked for changes to the rule including:

• adoption of a more inclusive definition of “medically frail” for the purposes of the exemption that recognizes the fluctuating and chronic nature of rheumatic diseases;
• use existing claims and care utilization data, as well as self-attestation, to the greatest possible extent to determine medical frailty before requiring supporting documentation from a physician or other healthcare practitioner;
• the development of a standardized medical exemption screening form that physicians and other practitioners can use to determine medical frailty status; and
• a requirement that states monitor and report indicators of care disruption resulting from work requirements.

Other groups including the American Medical Association (AMA) also have asked CMS to revise its approach. The AMA noted that the CMS rule would erode the protection for vulnerable people that lawmakers intended to be built into the work requirements “by conditioning the exemption on a functional assessment that Congress did not require.”

States’ Current Statuses and Future Plans

The new community engagement requirement applies to 43 states and the District of Columbia, that have expanded Medicaid eligibility to allow more adults to enroll or have certain Medicaid demonstration project waivers, CMS said. (Exempt from these rules are Alabama, Florida, Kansas, Mississippi, South Carolina, Texas, and Wyoming, according to the health policy group KFF.)

CMS said the rule includes exemptions from the community-engagement requirement for several groups, including those who are pregnant or in a postpartum period and parents and caretakers of children younger than 14 years.

Several states have long had an interest in applying work requirements for the adult Medicaid population.

Arkansas in 2018 became the first state to implement work requirements in Medicaid, requiring some adults to work 20 h/wk, participate in “community engagement” activities, or qualify for an exemption to maintain coverage. Critics of these work requirements, which were halted in 2019, note that many people who already worked or qualified for exemptions lost coverage due to difficulties with reporting their data to Arkansas.

Arkansas is among the states that have opted to start implementing new federal Medicaid community engagement requirements ahead of the January 1 deadline. Arkansas began a soft launch on July 1, with full implementation of the program going into effect January 1, 2027.

Nebraska led with a May 1 implementation date. Montana rules took effect on July 1, and Iowa plans for a December 1 launch.

Harvey, Katz, and Myers reported having no relevant financial disclosures.

Kerry Dooley Young is a freelance journalist based in Washington, DC. She has covered CMS for two decades.