The Affordable Care Act Has Helped Us Folks With HIV in So Many Ways—but It’s Once Again Imperiled

It’s time to fight for the Affordable Care Act again.

Remember 2017, when thousands of people with HIV and other health conditions journeyed to Washington, D.C. and got arrested in the halls of the Capitol over and over again to save the Affordable Care Act (ACA, otherwise known as Obamacare)? That tremendous show of activism just barely saved the ACA, pressuring just enough Republicans, including the late Sen. John McCain, to vote against its repeal.

But killing Obama’s signature creation has remained one of Trump’s—and most of the GOP’s—top ambitions, despite the fact that the ACA has slashed the number of people without insurance by about 20 million between 2010, just before it began, and 2016. And the fact that a very recent poll shows that, for all the ACA’s flaws (mainly health plans that remain unaffordable for many middle-class people), more people still favor it (49%) than don’t (42%).

But now comes another threat: The Supreme Court (SCOTUS), whose new term began on Oct. 5, is due on Nov. 10—just a week after the elections—to hear yet another case trying to kill the law in its entirety. A more liberal SCOTUS upheld the law back in 2012, but this time around, in addition to SCOTUS now including Trump picks Gorsuch and Kavanaugh, there’s a very good chance that Amy Coney Barrett, Trump’s new nominee to replace the recently deceased Ruth Bader Ginsburg on SCOTUS, will be seated on the court by then. Republicans hold a clear Senate majority in favor of ramming her confirmation through right away—and there’s really nothing Democrats can do to stop it, as much as they can threaten GOP senators with losing their seats in the upcoming elections, pointing to polls showing that the majority of Americans think whoever wins the presidential election should nominate the next SCOTUS justice.

And if Barrett is on the court by Nov. 10, there’s a very good chance she’ll cast the deciding vote to end the ACA once and for all. She’s written critiques of the legal logic behind SCOTUS’ decision to uphold the law back in 2012, saying that the decision “pushed the Affordable Care Act beyond its plausible meaning to save the statute.” And if the ACA disappears, millions of Americans—not least those of us living with HIV/AIDS—lose lots of key benefits and protections.

Worst, the case going before SCOTUS calls for all aspects of the ACA to be shut down immediately. “It would instantly collapse all the ACA insurance markets,” says Matthew Rose, director of U.S. policy and advocacy at Health GAP. “People would be immediately kicked off their plans, creating huge waves of chaos.”

So have a look here at what we stand to lose—and then resolve to fight for it! If you have a Republican senator whose seat is up for grabs on Nov. 3, you can start by calling them now to tell them that you want the winner of the presidential election to nominate the next SCOTUS judge—and that they’re losing your vote if they take part in ramming Barrett through before Election Day.

What We Stand to Lose if the ACA Is Killed

1. Coverage of Pre-Existing Conditions:

The most publicly supported aspect of the ACA is the provision that health plans must cover pre-existing conditions—of which HIV is a big one. Before ACA, people living with HIV (plwHIV) had a really hard time finding plans that would cover HIV—not to mention conditions that often go hand in hand with HIV, such as hepatitis C and other liver disease, depression, diabetes, high blood pressure, and more. In fact, there were only four states that let people without job-linked health plans buy plans without a health screen—and as expensive as ACA plans can be, those pre-ACA plans were even more expensive.

Covering pre-existing conditions “is a really critical provision for people living with HIV,” says Lindsey Dawson, associate director of HIV policy at Kaiser Family Foundation (KFF). To give you a sense of just how bad things could get again, Dawson notes that, in 2018, KFF identified 38 so-called “short term” health plans outside the ACA, which don’t cover pre-existing conditions, that the Trump administration allowed to go on the market. Not one of those 38, says Dawson, covered people with HIV.

“That’s a snapshot of what a health plan market without the ACA would be like,” she says.

2. Expanded Medicaid:

Although SCOTUS ruled that states could, rather than must, raise income limits on Medicaid in order to get more people covered under ACA, that aspect of the law has—in participating states—brought millions more people into coverage than before. And, notes Rose, that includes record new numbers of Black Americans.

Says Mark Hannay, director of Metro New York Health Care for All, “Medicaid is—and always has been—the largest payer of health care for plwHIV, so the ACA expansion of Medicaid alone is a good thing and brought coverage to millions, particularly in stingy states, many in the South, which opted for the Medicaid expansion. Most of them had crappy Medicaid programs before, but now they all have to meet one single national standard of who is eligible—any legal resident from age 18 to 65 bringing in a bit less than $13,000 a year—and all have to provide comprehensive benefits.”

Also, studies have found that Medicaid expansion has led to dramatically improved access to all sorts of preventive screenings, medications, and mental health services, including treatment for opioid and other addictions ravaging our country. “Kentucky was able to respond to their opioid epidemic because they did Medicaid expansion,” says Rose.

Plus, for those at highest risk of HIV, it’s greatly facilitated access to pre-exposure prophylaxis (PrEP). “People could have their PrEP taken away in a world where Medicaid expansion goes away,” says Rose.

3. Easing Up on ADAP:

Before the ACA, last-resort coverage for plwHIV who could get insurance no other way—no job coverage, too poor to pay out of pocket but too “rich” for Medicaid—was the AIDS Drug Assistance Program (ADAP), part of the Ryan White CARE Act. After Medicaid, this covered most plwHIV—about 25% of us (including this writer)!

Now that so many plwHIV have moved from ADAP to expanded Medicaid, that’s greatly freed up ADAP funds in many states to go to other necessary things that keep plwHIV on meds and healthy, such as transportation to doctor appointments and rental or mortgage assistance. ADAP funds have even been used for PrEP expansion efforts (although not to pay for PrEP directly) and other support measures for those at highest risk of getting HIV, such as gay Black men.

“Remember the waiting lists we had for HIV meds in the early and mid-2000s because ADAP was so underfunded?” asks Rose. “In a world where the ACA goes away, where so many more people with HIV are getting their meds through ADAP again,” that scenario may return, he says. “Especially with unemployment as high as it is due to COVID.”

Moreover, it’s much cheaper for ADAP to cover plwHIV’s premiums and copays on ACA plans than it is for ADAP to pay directly for meds and treatment—another plus that ACA brought about. Says Hannay: “The main cost saving for ADAP paying ACA insurance premiums is that it keeps people in the workforce, not having to live in poverty, and off state Medicaid rolls or, if uninsured, off state charity care rolls.”

It also means that plwHIV are covered for everything via their ACA plans, not merely HIV-related stuff, as once was the case. Back in those days, “I remember being told by people with HIV that they were buying insulin with their own money from friends for their diabetes,” says Dawson, “or that they were $25,000 in debt because they had a heart attack.”

4. Guaranteed Essential Health Benefits:

The ACA requires that medium- and large-size employers provide comprehensive benefits to all workers—or else the employee can use their state ACA exchange to buy coverage, on which the employer pays a penalty if the employee qualifies for an ACA plan premium subsidy (as do most people making roughly $51,000 or less). “This,” says Hannay, “creates an incentive for employers to comply, and means that plwHIV who have job coverage get their HIV-related expenses covered. Before the law, employers could offer skimpy plans with no penalties.”

True, “small-size employers”—less than either 100 or 50 employees, depending on a state’s definition—are not subject to this requirement. But it’s still been a big boon for many folks.

“Especially as we see HIV and aging becoming a growing issue,” says Rose, “you need to be able to make sure you can get non-HIV things, such as cancer screenings, covered.” Plus, he notes, a lot of HIV/AIDS service agencies have become community-based health providers, “and being able to bill for services, as they’ve been able to under ACA, is important to their survival.”

5. No More Medicare Donut Hole:

Folks with HIV on Medicare—not on ADAP or Medicaid—are no longer subject to the Medicare Part D coverage gap, or “donut hole,” for medicines, because the ACA gradually phased that hated part of the Medicare Modernization Act (of 2003) “down and out,” as Hannay puts it. The donut hole was the point above a certain amount of money that folks had to pay entirely for their own meds, until they reached another dollar level.

Hannay continues: “Because so many HIV drugs are so expensive, prior to the ACA, folks with HIV on Medicare had to pay 100% of their drugs’ costs when in the gap. The ACA is now saving them thousands of dollars.” But if you fall back into the donut hole and can’t cover your own meds,” says Rose, “you start rationing them—or you just don’t take them.”

Loss of the ACA might also lead to other changes in Medicare coverage, as well as higher premiums on Medicare plans.

6. The Possibility of Ending the HIV Epidemic:

One of the few good things the Trump administration has done health policy-wise is to commit to bringing new rates of HIV to such low levels that the epidemic is effectively over. This plan, in the early works this year, is supposed to go into full effect in localities nationwide next year. But it’s often been pointed out that such a worthy effort is undercut by the administration’s own attempts to kill the ACA, which has enabled the kind of dramatic expansion of HIV treatment and PrEP coverage necessary to end the epidemic.

Killing the ACA “just doesn’t square with this effort to end the epidemic,” says Dawson, “which requires that people living with HIV are engaged in treatment and that those at risk for HIV have access to PrEP.” Rose agrees: Kill the ACA, he says, “and you can take ending the epidemic right off the table.”

7. No More Knowing How Many Calories Are in That Chipotle Bowl:

That’s right. Yet another provision of the ACA—along with those requiring many employers to provide a reasonable break time and a place for breastfeeding mothers to pump milk—is the one requiring fast-food chains to post calories on every meal. Sure, nobody really wants to know that a single bacon double cheeseburger has more calories than someone’s total recommended daily intake, but haven’t you made healthier choices at least some of the time because those jaw-dropping calorie counts were staring you in the face?

For all these reasons, we folks living with HIV can’t afford to lose the ACA. “It’ll throw the health care system into chaos,” says Rose. “And,” adds Dawson, “to create those nationwide losses of health coverage in the middle of the COVID pandemic, it just underscores the vulnerability of people living with HIV” if the ACA disappears.

So—once more with feeling!—for those of you living in states with Republican senators facing elections in November: Call them now to tell them you’re pulling your vote unless they declare that the winner of the presidential election should decide the next SCOTUS nominee. Yes, it appears that most have already made up their minds to vote to confirm Barrett—and maybe you weren’t going to vote for them anyway—but it can’t hurt.

Because, as you can see, if we lose the ACA on Nov. 10, we lose ... a lot.