Gina Brown was pregnant and single when she was diagnosed with HIV in 1994. “I thought I was going to die,” she says. She promptly quit her job at a nursing home out of fear she’d infect her elderly patients.
More than 20 years later, Brown, now 51, is working as a social worker in New Orleans. The discovery of antiretroviral treatments turned her HIV diagnosis from a death sentence into a chronic illness, and Brown now worries more about her heartburn than the virus. But getting health care has been a constant struggle. She’s gone through periods of having no insurance and periods of expensive health coverage, where she had to choose between food, gas, or paying for her premiums.
With the arrival of the Affordable Care Act in 2010, those worries melted away.
The law meant HIV was no longer a barrier to health insurance. Brown got an employee-based health plan, and today she doesn’t pay any deductibles or premiums for the medicines she needs to keep her HIV in check. Her overall health has improved since she started on Obamacare, too. The new plan gives her access to specialists for other health issues — high blood pressure, cholesterol, acid reflux, neck pain — that she used to “treat at home, the best I could,” she said, when she didn’t have the money to cover copays.
Lately, though, her insurance worries have come roaring back. In November, on the night Donald Trump was elected president, she says, “I immediately thought I wouldn’t be able to afford [insurance] again.”
The ACA has been a game changer for people living with HIV
The ACA was designed to get more people access to health care, including those who were traditionally denied coverage because of “preexisting conditions” or were driven out of the marketplace because their health care was unaffordable.
Before the law passed, HIV patients were often uninsurable. If they could gain coverage, the high premiums and caps on annual or lifetime expenditures made health care costs prohibitive.
Even though more than half of people living with HIV are low-income, Medicaid wasn’t an option for some of them. (Only low-income children and parents, and pregnant or disabled people were eligible.) This often placed HIV-positive individuals in a Catch-22: They were told to get on antiretroviral treatment as soon as they were diagnosed, to suppress the virus and its spread and prevent disability. But they could only apply for Medicaid when the disease had already disabled them.
“The ACA marked a watershed moment in the epidemic’s history,” said the Kaiser Family Foundation’s director of global health and HIV policy, Jennifer Kates, “removing key barriers to health care access, including health care discrimination.”
When the health law was enacted in 2010, it got rid of the preexisting condition exclusion on the individual market, it removed the cost barriers and caps on insurance benefits, and it changed Medicaid eligibility so low-income people with HIV could finally qualify. The University of Chicago’s Harold Pollack said this had the effect of “stabilizing the fragile and fragmented safety net,” particularly for people with chronic illnesses like HIV. The Centers for Disease Control and Prevention calls the law “one of the most important pieces of legislation in the fight against HIV/AIDS in our history.”
Things got a little more complicated for patients with conditions like HIV in 2012, when a Supreme Court ruling relegated the decision to expand Medicaid to the states. Thirty-one states plus Washington, DC, accepted the federal funding to broaden Medicaid coverage. Most of the states that didn’t expand Medicaid tapped into Ryan White money — the federal grant program that funnels federal funds to cities and states to provide HIV health care to low-income patients — to purchase health insurance for HIV patients.
So ultimately, even the HIV patients living in states that didn’t expand Medicaid still benefited from the ACA.
Researchers think many of the deaths the ACA prevented have been HIV-related
There’s no direct evidence of Obamacare’s impact on HIV mortality, but the best research we do have on Medicaid expansion suggests there’s been a dramatic effect.
One of the best indicators comes from a New England Journal of Medicine study that looked at the impact of Medicaid expansion in three states — New York, Maine, and Arizona — prior to Obamacare. The researchers found mortality declined by 20 deaths per 100,000 as a result of broadening health insurance coverage — and a stunning 20 percent of that decline came from the reduction in HIV-related mortality.
A reanalysis of the data in 2016, by the NEJM study author, Benjamin Sommers, found that “the introduction of highly-aggressive antiretroviral therapy for HIV in the late 1990s” coincided with the expansion of coverage in these three states in 2001 and 2002. But “the relative decline in HIV-related mortality was nearly twice as large in Medicaid-expanding states as in non-expanding states, suggesting that expanded insurance worked in tandem with new antiretrovirals to produce larger health impacts.” In other words, the insurance — not just the advent of effective medications — saved the lives of people with HIV.
The insurance rate for people living with HIV certainly increased under the ACA. The the Kaiser Family Foundation just put out the first national estimates of changes in insurance coverage, and found that Medicaid coverage increased among people with HIV from 36 percent in 2012 to 42 percent in 2014, while the uninsured rate in this group dropped from 22 percent to 15 percent.
The regional data on the ACA’s impact is also compelling. According to the AIDS Foundation of Chicago, as of 2016, at least 12,000 people living with HIV in Illinois newly gained health care through the ACA — or a third of the HIV-positive population in the state. Most have done so through the state’s ACA Medicaid expansion. “These are people who didn’t have insurance before,” said AIDS Foundation of Chicago CEO John Peller. “It’s huge.”
In Alabama, one of the states that didn’t expand Medicaid, about 1,200 people with HIV gained coverage through Ryan White funds, said Kathie M. Hiers, the CEO of AIDS Alabama.
The impact can be seen in clinics for HIV patients. Greg Huhn, an HIV doctor in the Cook County Health and Hospitals System, says the ACA decreased the number of patients who have no insurance by about 30 percent at his practice, and increased patients who have commercial insurance payers — including ACA marketplace plans — by more than 140 percent.
Getting more people with HIV into health care not only drives down mortality and help control the spread of the infection — it also improves the health status of HIV patients, he added.
“There are HIV patients that have heart conditions, that have liver problems, particularly hepatitis C. Oftentimes, they have mental health issues and depression,” Huhn said.
Before 2010, they couldn’t always access the services they needed to care for these conditions if they were uninsured in traditional health care networks. Ryan White programs provide health care to people who cannot get insurance. But they’re mainly focused on HIV care, not all the other health issues people may be dealing with, and most of the $2.3 billion that goes to Ryan White is spent on HIV-related treatment and medications.
That’s only a small slice of people’s health care needs. “As people with HIV live longer, we know they’re experiencing more co-occurring chronic conditions. And something as simple as asthma — if you’re uninsured, you can’t afford your asthma inhaler — can have an impact on your ability to manage HIV,” said Peller.
“The increase in coverage, the fact that a third of people living with HIV in the state got coverage, has been a game changer for efforts to end the epidemic in Illinois,” he added. “It’s just life-changing for people.”
Trump hasn’t had much to say about HIV — but the community is bracing for cutbacks
HIV doctors and patients said they’re bracing for what might happen with Medicaid expansion, and any changes to the preexisting condition clauses and lifetime and annual caps on spending. Those who gained coverage through Ryan White in the states that didn’t expand Medicaid could lose it (since repealing the ACA, or even simply dismantling its components, might make HIV patients ineligible for affordable insurance again).
Ryan White funding may also be targeted by Congress. Unlike Medicaid, it’s not an entitlement program, so it’s subject to budget appropriations. Any cuts could help spur an uptick in the epidemic — which is already on the increase in gay and bisexual populations, particularly in the southern US.
“Since sexual contact continues — and unprotected sexual contact continues — the only reason we’ve seen [the HIV rate] go down is because [HIV-positive people] are on medications and their viral loads decrease, so they’re less infectious,” said HIV researcher Rick Elion. “The consequences of their behavior are mitigated by the efficacy of medication and prevention [because the medication makes them less likely to transmit the virus].” Creating barriers to patients accessing their medications and health care could be disastrous for the epidemic, he added.
President Trump hasn’t had much to say about HIV. But Vice President Mike Pence has. As governor of Indiana, he first resisted addressing an out-of-control HIV outbreak in his state for ideological reasons, and then changed his mind based on evidence that clean needle exchanges could slow infections among drug users. He advocated for abstinence-only education and, in 2000, suggested Ryan White only get funding after an audit, “to ensure that federal dollars were no longer being given to organizations that celebrate and encourage the types of behaviors that facilitate the spreading of the HIV virus.”
The Republican Party has a mixed record on the disease. Ronald Reagan, Trump’s hero, mostly ignored the raging AIDS epidemic. George W. Bush prioritized HIV, launching PEPFAR, the global heath program to combat AIDS around the world and the largest commitment by any country dedicated to a single disease. (Secretary of State Rex Tillerson and Pence have both supported PEPFAR — though the program is in a state of limbo.)
It’s not yet clear how the Republican Congress will deliver on its promise of swift repeal of a law that’s now more popular than the president. For now, groups like AIDS United and the National Alliance Of State & Territorial AIDS Directors are fighting on Capitol Hill to keep the law or at least replace it simultaneously with something that has similar levels of coverage and costs.
Whatever happens, Gina Brown, the HIV-positive New Orleans social worker, says she hopes legislators remember that changes in the law affect the health of real people like her. “This isn’t just a piece of legislation on paper,” she says. “I know so many people who are healthy today because of the ACA.”
Correction: This article incorrectly stated that George W. Bush pushed for a National HIV Strategy.