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What Medicaid Work Requirements Might Mean for People With HIV

These and Other Rules Show That Many States, Urged on by Trump, Are Trying to Push People Off Their Coverage

February 8, 2018

Seema Verma and Donald Trump

Administrator of the Centers for Medicaid & Medicare Services Seema Verma with Donald Trump (Credit: Shealah Craighead [Public domain], via Wikimedia Commons)

Have you heard that the Trump administration has told states to go ahead and request approval to add work requirements to Medicaid coverage? And that Indiana and Kentucky have already received approval from the feds to do so?

Meanwhile, Utah, Arizona, Kansas, Arkansas, Wisconsin, North Carolina, New Hampshire, and Maine are awaiting their approvals, while Alabama, Idaho, and South Dakota are considering putting in waivers for approval.

Yep. Welcome to Medicaid in the Trump/GOP era, when the goal of the federal government is not to extend program coverage to as many people as possible -- as it was under Obama, whose Affordable Care Act urged states to dramatically expand income eligibility requirements for the program -- but to deny it from as many as possible.

Case in point: Indiana's been allowed to kick people off Medicaid for three months if they don't file their paperwork on time. And it's not the only state seeking the ability to do stuff like that. The administrator of the Centers for Medicaid & Medicare Services (CMS) under Trump, Seema Verma, was the architect of Kentucky's waiver application, as well as Indiana's Medicaid policy, initiated under former governor, now vice president, Mike Pence.

Related: Administration Attacks on Drug Pricing Program Have Advocates Worried


But before HIV-positive folks on Medicaid panic too much, let's note a few things. First, most people on Medicaid either already do work or are disabled, and even the not-so-compassionate Trump administration directs states to exempt from the work requirement Medicaid recipients who are "medically frail," although that term is not defined.

"We would like [the Trump administration] to be clear that 'medically frail' always includes people with HIV and hepatitis," says Carl Schmid, deputy executive director for the national advocacy group The AIDS Institute.

Second, some states, including Kentucky and Indiana, fortunately include HIV in their definition of "medical frailty." So, if you are an HIV-positive resident of one of these states and truly cannot work because of physical or mental illness, you're not going to be automatically kicked off your Medicaid because of it.

Third, the administration guides states to exempt pregnant women, those with mental health and substance issues including opioid addiction, primary caregivers of dependents, full-time students, and some other groups from the work requirement.

Nonetheless, notes Phil Waters at Harvard Law's Center for Health Law and Policy Innovation, "Even if people living with HIV are formally exempt from the requirement, the complexity involved with tracking and administering an exemption almost guarantees mistakes will be made and folks will end up punished."

In late January, 15 Medicaid recipients in Kentucky filed suit against the work requirement, saying that it violates federal laws, such as the Administrative Procedure Act, as well as the constitutional requirement that presidents "take care that the laws be faithfully executed."

Said MaryBeth Musumeci, who tracks Medicaid for the Kaiser Family Foundation, "Everyone will be closely watching this litigation."

Also, in late January, dozens of AIDS organizations around the country (under the umbrella of the Federal AIDS Policy Partnership) sent the Trump administration a letter opposing Medicaid work requirements.

"The Medicaid program is a critical source of health coverage for life-saving care and treatment for people living with HIV," the letter read. "More than 40% of people living with HIV in care count on the Medicaid program for treatment that keeps them healthy and productive. Ensuring uninterrupted access to effective HIV care and treatment is important both to the health of people living with HIV and to public health."

"When HIV is effectively managed," the letter continues, "the risk of transmitting the virus drops to near zero. This guidance from CMS encouraging states to condition receipt of medically necessary care on satisfying a work requirement threatens to reverse the progress we have made in providing early access to prevention, care, and treatment to people living with HIV."

In states that have requested the feds for a Medicaid work requirement, HIV/AIDS advocates are nervous. "We're one of the states that didn't fully expand Medicaid under Obamacare, so we already have limited services," says Stan Penfold, executive director of the Utah AIDS Foundation. Utah, he said, already has a rule providing that those who don't recertify for Medicaid annually within 30 days get temporarily thrown off the program. Plus, he says, the state's very narrow Medicaid expansion doesn't cover single, childless men -- which often includes gay men, the group with the highest HIV rates.

"What's most alarming to me," says Bill Keeton of the AIDS Resource Center of Wisconsin, "is that we've done a good job here from a cost perspective. We've saved more than $4 million a year because we make sure our HIV-positive Medicaid patients get comprehensive care. Ninety percent of our patients are achieving viral suppression. Now, you're going to throw that programming into limbo by creating six-month gaps in eligibility for folks struggling to find jobs? They're going to get sick, and costs are going to go up. They're going to go on ADAP" -- the AIDS Drug Assistance Program, the federal/state health payer of last resort for people with HIV/AIDS --"and all you've done is shift costs back from one program to another."

Work requirements and enrollment lockouts are part of a pattern by many states -- now encouraged by the Trump administration -- to find ways of making it harder for people to stay on Medicaid. Kentucky, for example, is among several states allowed to charge Medicaid recipients a modest monthly premium. It was just allowed to raise that premium to 4% of one's income -- the highest bump ever approved by the feds. That means that someone whose monthly income is about $1400 could end up paying $40 a month for Medicaid. And failure to pay triggers being kicked off the program for up to six months. Indiana Medicaid recipients also pay a premium for coverage.

If you're an HIV-positive Medicaid recipient in a state requesting work or other restrictive waivers, what can you do? Start by reaching out to your local AIDS or health advocacy organization to see whether there's a grassroots effort to get your state to undo -- or at least to soften the terms of -- the request. But what if there isn't? Then, consider starting one yourself. All it takes is a concentrated flow of visits, calls, and even tweets to your state Medicaid office -- or to elected state officials with clout. Help them understand the ways in which such seemingly modest cuts could severely hurt the state's overall public health.

In Indiana, for example, last year, 25,000 people lost Medicaid coverage due to a failure to pay their premium. That's a lot of people in one state suddenly without health care.

Tim Murphy has been living with HIV since 2000 and writing about HIV activism, science and treatment since 1994. He writes for and has been a staffer at POZ, and writes for the New York Times, New York Magazine, Out Magazine, The Advocate, Details and many other publications. He is also the author of the NYC AIDS-era novel Christodora.

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This article was provided by TheBody.

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