What people with HIV on Medicaid should know about upcoming work requirements–and what they can do now

More than a decade ago, when the Affordable Care Act (ACA) gave states the option of expanding Medicaid to cover more low-income people, many people living with HIV in the states that took the option were able to leave their ADAP/Ryan White coverage of last resort for HIV care and obtain comprehensive Medicaid coverage. In fact, currently in states with Medicaid expansion, 60% of people with HIV get their healthcare through the program, according to KFF, a health policy think tank. Forty states and the District of Columbia have opted for the expansion.

But starting next year, that coverage could be much harder to hold on to. That’s because one provision of the “Big Beautiful Bill” passed by the Republican-led Congress and signed into law by President Trump last year is that people ages 18–64 who received Medicaid through the expansion program will, starting Jan. 1, 2027, have to prove that they are doing some combination of work, school or volunteering totaling 80 hours a month (or $580 per month in 2026) if they want to hold on to their coverage. 

It’s what many health coverage advocates have called a cruel law meant to push people off the Medicaid rolls via red tape; that’s exactly what happened in 2019 when some states imposed work requirements.

HIV is not among the health or other conditions that are categorically excluded from the law’s work requirement, even though it excludes people who are “medically frail” or have “special medical needs.” (Other exclusions include being pregnant, blind, disabled, on SSI or SSD, having a mental health or substance/alcohol disorder, or being in a substance treatment program, a disabled veteran, the primary caregiver for a disabled person or a Native American.)

A rule issued earlier this year by the Centers for Medicare & Medicaid Services (CMS) says that someone’s condition must “significantly impair” them if they are to be exempted from the work requirements. “That adds another layer of restrictions on the law,” says Carl Schmid, executive director of the HIV+Hepatitis Policy Institute, which opposes the requirements. It means that people with HIV for whom meeting the 80-hours-a-month requirement could be burdensome to the point of impossible might still be subjected to it.

“Things with this requirement look different than what many expected,” says Lindsey Dawson, associate director of HIV policy at KFF. “Many people thought that having a serious condition like HIV would exempt someone from these work requirements, but under the CMS rule, you also have to demonstrate that your HIV in some way interferes with your ability to fulfill the work requirements.”

A coalition of Democratic attorneys general from 25 states and the District of Columbia are suing the Trump administration over the CMS rule, saying it goes beyond the law and that it will prevent people who are Medicaid-eligible from accessing the care they need. Oral arguments in the case will be heard October 20. 

But even if the plaintiffs win, which would lower the exemption bar for folks with HIV, the core work requirements in the law will remain in place.

In the meantime, here’s what folks with HIV on expanded Medicaid—and their service providers—should know and what they can do:

Be on the lookout for mail or other alerts from your state Medicaid program. It’s up to states to figure out how to implement the work requirement, and currently many of them are spending huge amounts of money setting up systems to do so. (Nebraska, Montana and Arkansas have already implemented it, and Iowa plans to do so Dec. 1.) Historically, when work or other requirements were imposed on benefits programs, people tended to be kicked off the program because they didn’t know about the requirements or ignored action alerts. So keep your eyes peeled.

Also, make sure your contact info is updated at your state Medicaid office; you can find the number for yours here.

Work with a service or benefits provider if you can. In many places, HIV/AIDS organizations or other social service providers are hyper-knowledgeable about new coverage rules. In fact, they’re often the ones lobbying their state to make such rules as flexible as possible—and they regularly send out alerts to clients about updates. It is not too early for you to reach out to your nearest service nonprofit and ask what the work requirements system is going to look like in your state. (If you can’t find one here, you can also Google “benefits navigator” and your location.) 

You may already be fulfilling the 80-hours requirement—in which case, talk to your service provider about the reporting details. Many folks with or without HIV who work are on Medicaid because their jobs don’t provide health insurance. But they may worry that they don’t hit the 80-hour mark every month. States will be allowed to decide if they use a so-called “lookback” period of one to three months to maintain eligibility. If your state uses a three-month lookback, it’s looking at your average of work/school/volunteer hours over three months, not merely one. 

Your benefits adviser will likely know your state’s lookback period as soon as it is decided on.

If you don’t currently fulfill the 80-hour requirement, but you could, consider getting something in place now. This might be a good time to consider taking on more work hours if you can, taking classes and/or volunteering so you’re already fulfilling the hours requirement when it kicks in Jan. 1. It goes without saying: document everything. For example, if you’re studying or volunteering, make sure your teacher or supervisor signs a statement at the end of each month showing how many hours you put in. 

If you can’t fulfill the 80-hour requirement, start thinking now about how you can document that. If you fall into exclusion categories, such as being medically impaired or someone’s primary caregiver, begin to gather any and all documentation to prove it. Again, talk to a service provider or benefits navigator about what’s ahead and what you should be doing at this point. 

Important to know: in 2027, it appears that states will have the option of letting Medicaid recipients “self-attest” as to their impairment, or simply say (without documentation), “I have [medical issue] and can’t fulfill the work requirement.” How this will play out state-by-state is unknown. In 2028, recipients will be only able to do this once per enrollment period or otherwise will have to show documentation of the impairment from health providers or other sources, such as insurance billing codes. 

Again, this could get complicated, which is why it wouldn’t hurt to talk now, or soon, to an advocate or service provider. Very broadly speaking, blue (Democratic) states are more likely to find ways of fulfilling the law’s work requirements that are looser and more forgiving for recipients, while red (Republican) states are likely to implement more strictly. (For example, the three states that have operationalized work requirements early are all deep red.) 

Many, if not all, folks with HIV on expanded Medicaid are going to have to deal with these burdensome requirements. It’s possible that a future Congress will repeal the requirement. But for now, the rule goes into effect Jan. 1, which is why it makes sense to have a conversation with an expert now about what you can likely expect with your situation and how to prepare for it. 

Amid a change that is stressful for many, this may at least provide some peace of mind. “There are a lot of unknowns right now at both the federal and state level,” Dawson says, “so it’s going to be instrumental that people living with HIV understand these requirements in order to maintain Medicaid access.”