New Yorkers With HIV Will Be Irreparably Harmed Under The Proposed CMS Medicaid Work Reporting Requirement Rule

The interim final rule released by the Centers for Medicare & Medicaid Services (CMS) this week as guidance to states to implement new burdensome work reporting requirements by January 2027 will strip away access to HIV medications and care that are vital to sustain individual health, prevent new HIV infections, and end the HIV/AIDS crisis.

The proposed rule implements harmful Medicaid provisions in federal law HR1, passed last year, which require most adults with low incomes and without dependents to document at least 80 hours per month of work, education, or related activities by the end of 2026 to maintain Medicaid coverage in the 40 states and the District of Columbia that expanded Medicaid under the Affordable Care Act—a devastating cut to the Medicaid program that the Urban Institute estimates will cause between 4.9 and 10.1 million people nationwide to lose Medicaid coverage by 2028, many simply due to the inability to meet bureaucratic documentation requirements.

The proposed guidance goes beyond the language of HR1, however, to severely limit exceptions meant to protect Medicaid recipients who are medically frail or have a serious or complex medical condition from loss of coverage. Under the guidance, states can exempt a person with HIV infection, which the rule recognizes is a “serious or complex medical condition” from the onerous work requirement if the person can repeatedly document at each recertification that the diagnosis “significantly impairs” their ability to work. This “significantly impairs” language does not appear in the HR1 legislation and puts the lives of Medicaid recipients with HIV at dire risk.

In New York State, almost half of all people living with HIV—an estimated 55,000 to 57,000 individuals—depend on Medicaid for their healthcare coverage. Nationwide, Medicaid is the largest payer of HIV care, covering 40% of people with HIV at any given time, and 85% of people with HIV will rely on Medicaid to access care at some point in their lives. Yet, while Medicaid accounts for an estimated 45% of all federal spending on HIV care and is the largest source of public financing for HIV care in the U.S, followed by Medicare, in 2022 CMS estimated that federal Medicaid spending on HIV represented less than 2% of total federal Medicaid spending.

All people with HIV have a lifelong serious and complex medical condition for which uninterrupted access to HIV treatment is required to suppress viral load to an undetectable level that sustains optimal health and prevents transmission of the virus to others. For these individuals, continuity of care is not optional; it is essential. Any interruption in treatment leadsto worsened health outcomes, new HIV infections, and significantly higher long-term costs to the healthcare system. A prolonged loss of care results in progression to AIDS and premature death. From both a public health and fiscal perspective, policies that create barriers to continuous coverage HIV care are inefficient and counterproductive.

The over half of people with HIV between the ages of 50 and 64 face a heightened risk of losing Medicaid coverage for not meeting the new work requirements, as age and HIV stigma pose particular challenges trying to reenter the workforce.

Since HR1 passed, advocates and state health departments have urged CMS to automatically exempt people with HIV, or at least provide states that option, so that they do not have to navigate cumbersome new procedures to document their status or risk loss of health coverage. It is unconscionable that the proposed rule not only fails to put in place such a procedure to ensure ongoing lifesaving coverage for Medicaid beneficiaries managing the serious and complex medical condition of HIV infection but places an additional onerous burden to demonstrate “significant impairment” that goes beyond HR1’s language and intent.

Medicaid plays a critical role in the US HIV response, covering HIV screening, prevention, and treatment services that are necessary to end the HIV epidemic. It covers effective HIV treatment, which, when used consistently, reduces viral load to undetectable levels, preventing HIV transmission to others, sustaining health, and reducing expensive acute and inpatient care. Medicaid also covers HIV pre-exposure prophylaxis (PrEP), which prevents the acquisition of HIV with a daily pill or a bi-monthly injection, ensuring people who are vulnerable to HIV are protected and reducing the number of new infections. Simply put, medications to treat and prevent HIV are readily available if people can afford them.

A health-centered, morally grounded, and fiscally responsible approach requires all of us to stand with New York State to firmly oppose a policy guaranteed to that create avoidable harm. Ensuring uninterrupted Medicaid coverage is one of the most effective tools we have to:

• Prevent new HIV infections

• Maintain viral suppression for people living with HIV

• Reduce costly hospitalizations and emergency care

• Support workforce participation by keeping people healthy

Simply put, protecting Medicaid access for people with HIV is not only the right thing to do—it is the smart thing to do. New York State has long demonstrated that when government prioritizes health, equity, and long-term investment, communities thrive and costs are contained. The proposed rule is an inexplicable and morally insupportable failure to care for low-income people with HIV that, if it stands, will result in unnecessary deaths, new HIV transmissions, and a devastating set back to New York State and National efforts to end HIV/AIDS as an epidemic.

To hear Housing Works co-founder Ginny Shubert discuss this proposal, listen to her appearance on The Brian Lehrer Show here.

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