‘Absolute Game Changer’: How the Affordable Care Act Helped Save the Lives of People With HIV

Graphic via Desirée Tapia

By Keya Vakil

August 20, 2020

If the conservative-leaning Supreme Court ultimately strikes down the healthcare law, it could set America back years in its fight against HIV/AIDS, taking the country back to a time when the virus posed a deadlier threat than it currently does. 

When Dr. Ian Gilson first began treating patients with HIV in 1985, the epidemic was in full swing, marking the beginning of a decade that he described as a “horror story.”

HIV (the human immunodeficiency virus) was first identified in 1981, and Dr. Gilson, now a 71-year-old physician in Milwaukee, Wisconsin, saw some of the very first patients in the city who suffered from AIDS (acquired immunodeficiency syndrome), a chronic, potentially life-threatening condition caused by HIV.

“These patients were just limping along from one disaster to the other, and we were just running out of drugs,” Dr. Gilson said. Doctors experimented with different medications to try and treat the virus, but encountered drug resistance and opportunistic infections, he added.

Ineffective treatments weren’t the only issue. Many patients with HIV—who disproportionately came from marginalized communities, including the LGBTQ community, communities of color, and low-income Americans—were uninsured and couldn’t afford treatment, which cost up to tens of thousands of dollars a year, Gilson said.

By the mid-1990s, nearly 800,000 Americans had been diagnosed with HIV, including more than 500,000 with full-blown HIV/AIDS, according to the Centers for Disease Control and Prevention. Nearly 320,000 people had died from the disease by that point. 

The ensuing years marked a turning point in the fight against HIV/AIDS, as scientists developed effective antiretroviral drug treatments that dramatically reduced deaths from the disease, extended life expectancies for patients living with HIV, and improved their quality of life. From 1995 to 1998, the U.S. saw a 38% decline in annual AIDS cases and a 63% decrease in annual AIDS deaths from 1995 to 1998. 

But for many patients with HIV, obtaining insurance coverage remained an issue for nearly two decades, until the 2010 passage—and 2014 implementation—of the Affordable Care Act. The landmark healthcare law expanded access to coverage, required insurers to cover the costs associated with managing conditions that began before a person’s healthcare plan went into effect, removed cost barriers and caps on insurance benefits, and changed Medicaid eligibility so low-income people with HIV could finally qualify.

The ACA was an “absolute game changer” for people living with pre-existing conditions, including patients with HIV, said Dr. Pritesh Gandhi, a primary care doctor based in Austin, Texas.

But all those gains are now at risk. A coalition of 18 Republican-led states—with the backing of President Donald Trump—are suing to repeal the ACA. The case is set to be heard before the U.S. Supreme Court this fall, and the stakes could not be higher. If the ACA is repealed, more than 20 million Americans, including many patients with HIV, will lose health insurance, and as many as 133 million people living with pre-existing conditions may once again be denied coverage. 

If the conservative-leaning court ultimately strikes down the law, it could set America back years in its fight against HIV/AIDS, taking the country back to a time when the virus posed a deadlier threat than it currently does. 

‘You Essentially Were Considered Uninsurable’

In the early years of the HIV epidemic, doctors and scientists were overwhelmed by the new virus and struggled to understand and treat it. Treatment was also further hampered by the stigma surrounding the disease and those infected with it. Patients with HIV, meanwhile, struggled to get health insurance to cover the exorbitant costs of treatment. 

Even those people who had employer-sponsored private insurance—the foundation of the American healthcare system—were often hung out to dry. Insurance companies frequently refused to provide coverage for patients with HIV/AIDS, dumping them from their rolls or using “catastrophic illness” exemptions to refuse to cover AIDS-related costs. Many others lost coverage when they became too sick to work.

Insurance companies were not shy about discriminating against HIV/AIDS patients, according to Wendell Potter, an insurance company executive-turned-whistleblower-turned-Medicare for All advocate.

“If they didn’t get some kind of coverage, they would get sick and present to the ER with pneumocystis pneumonia or something terrible and they’d die.”

“If insurance companies were willing to sell them a policy, in many cases it was priced beyond their ability to pay,” Potter said. “Secondly, they would—in many cases—not sell you any coverage at all, period. You would be blackballed, and once you were denied coverage by one insurance company, it became part of your record and you essentially were considered uninsurable.”

Some patients received coverage through Medicaid, which by the early 1990s, had become the largest coverage provider for HIV/AIDS treatment in the country. However, the program’s requirements were stricter before the ACA, covering only the poorest and sickest patients as well as pregnant and disabled people. People who survived a more than two-year waiting period after a diagnosis of AIDS could also qualify for Medicare, but that wait was often too long, and  many patients died before the 29-month period was up.

RELATED: Medicare and Medicaid Led a Racial Justice Revolution in Health Care

The Ryan White Care Act, passed in 1990, filled some of the gaps in the system, providing billions of dollars in funding for treatment. But the program was a “payer of last resort,” and the nation’s patchwork insurance system still left enormous holes in coverage, often leaving patients with HIV without reliable, consistent insurance to cover treatment. 

“People would lose insurance … and then they sort of disappeared off my radar screen,” Dr. Gilson said. “If they didn’t get some kind of coverage, they would get sick and present to the ER with pneumocystis pneumonia or something terrible and they’d die.”

'Absolute Game Changer': How the Affordable Care Act Helped Save the Lives of People With HIV
Graphic via Desirée Tapia

How the ACA Helped Patients Living With HIV

Since the ACA went into effect in 2014, more than 20 million of people have obtained health coverage, including many of those living with pre-existing conditions. Americans living with HIV were among them: They are now guaranteed protections and cannot be denied insurance. 

The ACA’s Medicaid expansion in particular was a huge benefit, allowing tens of thousands of people with HIV to obtain health insurance coverage. In the states that expanded Medicaid between 2012 and 2014, the uninsured rate among this group dropped by half. As of 2017, 42% of the 1.1 million Americans living with HIV received coverage through Medicaid, up from 36% in 2012, before the ACA went into effect. 

This increase in coverage and the benefits that came with it was “hugely important” for low-income people living with HIV, according to Howard Koh, the former assistant secretary for health for the U.S. Department of Health and Human Services under President Barack Obama, who was intimately involved in the ACA rollout. 

“If you can get Medicaid coverage, that can give you access to care and drug treatment and other supports,” said Koh, now a professor of public health at the Harvard T. H. Chan School of Public Health. 

Under Medicaid, patients can receive affordable coverage for HIV drug therapies, lab and physician services, inpatient and outpatient hospital services, medically necessary HIV testing, and prevention medication for HIV-negative individuals, known as PrEP. 

Medicaid expansion also helped patients who may not have necessarily received coverage, Koh pointed out. “If you’re on Medicaid and you can get treatment covered through Medicaid through the ACA, that relieves pressure on Ryan White,” Koh said.

While there’s no direct evidence of the ACA’s impact on HIV mortality, research suggests that Medicaid expansion has had a substantial effect in reducing deaths. A 2012 New England Journal of Medicine study analyzed what happened after New York, Maine, and Arizona loosened Medicaid eligibility requirements in 2001 and 2002, prior to the ACA, and found that expanding coverage led to a decrease of 20 deaths per 100,000, with 20% of that decrease being driven by a reduction in HIV-related fatalities.

In 2016, physician and health economist Benjamin Sommers re-analyzed the data. He found that while advances in antiretroviral therapy for HIV coincided with the expansion of coverage in those three states, “the relative decline in HIV-related mortality was nearly twice as large in Medicaid-expanding states as in non-expanding states.” This suggests that it wasn’t just better drugs that saved lives, but increased access to insurance as well.

Dr. Gilson was explicit that the ACA saved the lives of “many” HIV patients and also allowed them to change jobs more freely, without worrying about losing access to potentially life-saving coverage and care. 

The healthcare law also requires private insurers to cover preventative services like HIV testing, allows young adults to stay on their parents’ insurance until age 26, and mandates coverage of prescription drugs for PrEP, all of which have proven helpful in the fight against HIV, according to Dr. Gilson.

The combination of effective antiretroviral treatments, expanded health care, and improved screening have allowed many of Dr. Gilson’s patients with HIV to live “fairly normal lives,” he said. Studies have shown that people with HIV who start receiving regular antiretroviral therapy promptly and have access to consistent medical care now have a similar life expectancy to people without HIV, though they are more likely to develop medical complications earlier as they age. 

But even with these complications—which can include heart and lung issues—the virus is no longer the death sentence it once was. Improvements in treatment and coverage “pretty much normalized the condition,” Dr. Gilson said. 

Despite the ACA’s role in improving the lives of patients with HIV, the Trump administration is dedicated to undoing the law and taking benefits away from them and those with other pre-existing conditions.

‘It Would Be Horrible … If We Had to Go Back to Pre-ACA Days’

Republicans have sought to repeal the ACA ever since it was passed into law, but they’ve failed over and over again. Should they finally succeed this time around, the consequences would be devastating.

“I think we have an entire generation of Americans that don’t know what health care was like prior to the ACA,” Dr. Gandhi said. “You think it’s bad now? It was unconscionable the amount of preventable suffering that happened at the hands of our healthcare system that the ACA was able to mitigate.”

He said that ACA repeal would result in more patients with HIV struggling to treat and control the virus, leading to more cases of full-blown AIDS, and ultimately, more deaths from AIDS. “We are so much better than that as a country and the thought of that, I think, sends shivers down the spine of any primary care physician or HIV specialist in the country,” Dr. Gandhi added.

Dr. Gilson agreed, saying that the loss of the ACA—and Medicaid expansion with it—would likely result in “hundreds of thousands of preventable deaths,” as insurers could once again deny coverage to those with HIV and other pre-existing conditions. 

RELATED: The GOP Wants to Repeal the ACA During a Pandemic. Democrats Are Trying to Expand Coverage.

“It would be horrible—just an incredibly bad thing—if we had to go back to pre-ACA days and let the insurance industry do what they did then to maximize profits, which was to exclude whenever possible people, who needed care,” Potter, the former insurance executive, added. 

President Trump and the GOP have long promised they would protect coverage for people with pre-existing conditions. Just this month, Trump made a bizarre statement saying he would issue an executive order requiring insurers to cover pre-existing conditions, even as he wants to repeal the very law that guarantees those protections. 

But nearly a decade after they began their war on the ACA, Republicans have yet to propose their own bill that protects pre-existing conditions. 

“They talk a good game about protecting pre-existing conditions, but people need to understand that it’s just talk, because if you do away with the ACA, you are essentially doing away with the protections for pre-existing conditions,” Potter said. “If we repeal the ACA, I cannot imagine how the Republicans can live up to the promise that they will continue to protect people with pre-existing conditions. It just can’t be done, and I think the reason why we are still waiting for the Republican legislation is because they know they can’t figure that out. They can’t do it.”

The end of the ACA would also force patients to once again pay out of pocket for preventative screenings and remove the ability of young adults to stay on their parents’ insurance until age 26, which could lead to a surge in HIV among young people. 

“If we repeal the ACA, I cannot imagine how the Republicans can live up to the promise that they will continue to protect people with pre-existing conditions. It just can’t be done.”

“If you just do away with [the ACA] a lot of these young people would be uninsured and they lose access to PReP, which can prevent them from getting HIV infected,” Dr. Gilson said. 

The ripple effect of an ACA repeal would also further strain other programs meant to curb HIV deaths. “If we now have that patient population no longer able to get insurance and going back to the Ryan White system, it will strain the safety net,” said Dr. Dori Russ, a physician based in Jacksonville, Florida. 

More than 700,000 Americans have died of HIV/AIDS since the epidemic began nearly 40 years ago. Currently, more than 1.1 million people in the U.S. live with HIV, but the number of annual infections has been reduced by more than two-thirds since the epidemic’s peak in the mid-1980s. The number of annual deaths among people with HIV has also plummeted, from a peak of roughly 50,000 in 1995 to only 15,820 in 2018. 

RELATED: Trump Administration Admits It Doesn’t Have ‘Exact Details’ of Possible ACA Replacement, Even Amid Push for Repeal

“The transformation of HIV care has been the single most amazing thing that’s happened in my 43 years of practice,” Dr. Gilson said.

While the emergence of effective treatments means the U.S. is unlikely to experience another full-blown HIV/AIDS crisis, the absence of the ACA would undoubtedly complicate the fight against the disease. Dr. Gilson was blunt in his assessment of the GOP war on the ACA and what it would mean for his patients. 

“It’s mind-boggling. I don’t understand it, except to assume that Republicans are pretty hard-hearted people and don’t seem to be concerned about health maintenance, because you need coverage to maintain your health these days,” he said. “The bottom line is they cannot repeal the ACA. Anybody who looks at this in an objective way—you’ve got to understand that they just can’t do it. It would be chaos.”


  • Keya Vakil

    Keya Vakil is the deputy political editor at COURIER. He previously worked as a researcher in the film industry and dabbled in the political world.

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