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Repealing Obamacare will have “devastating” consequences for millions—and many who are living with HIV

, by Emily Land

Tim Pursell found out he was living with HIV during a time in his life when he was uninsured. “There were maybe six to eight months—during my first nine months of having HIV—when I had really spotty medical care,” he said. “I knew I was positive, but I couldn’t stay on treatment. My viral load was just going crazy. I had two different HIV doctors, but I couldn’t see them because I couldn’t pay for them.”

Pursell eventually was able to get back into HIV care by qualifying for Medi-Cal—the California Medicaid health insurance program that offers eligible residents free or low-cost health care coverage. He was able to qualify for Medi-Cal, as a low-income resident, due to an expansion of the Medicaid program by the Affordable Care Act (ACA) in 2014.

Tim Pursell

Tim Pursell

“I was so glad that they changed [Medi-Cal] around,” said Pursell. “I was able to go to Ward 86 and get everything in one place—and the care was better. Within six months of getting on Medi-Cal, I was completely virally suppressed. I participated in a study that cured me of hepatitis C. I got short-term mental health treatment. I got all of these things to keep me healthy.”

The Affordable Care Act (ACA), or “Obamacare,” was signed into law in 2010 and has since benefitted millions of Americans needing access to affordable health insurance—including people living with HIV and other pre-existing conditions. In addition to setting up state-based “marketplaces” where people can purchase private insurance (with subsidies available for low- and middle-income people), the ACA allows states to expand their Medicaid programs to cover low-income residents, and outlawed discriminatory practices by health insurance companies like denying coverage to people with pre-existing conditions.

Families USA has a petition to protect the ACA. Read more, and add your signature.

Now, people across the nation are worried for the future of America’s health insurance system. Will an incoming administration led by President-elect Donald Trump and a Republican-controlled Congress fulfill promises to repeal the ACA made along the campaign trail? What will become of people who now benefit from the ACA, particularly people with pre-existing conditions like HIV? And, what—if anything—can people who are worried do?

The ACA has benefitted millions since its implementation

The Affordable Care Act has benefitted millions of people since its implementation. Since 2010, about 20 million people have gained health insurance due to the ACA, resulting in historic lows in uninsured rates.

Kaiser Family Foundation, in a 2016 report, shared how the ACA has benefitted people living with HIV in states across the U.S. During a series of focus groups with people living with HIV, the Foundation documented how people with new health insurance coverage were able to meet their both HIV and non-HIV health care needs.

One person from New York City, who had newly enrolled in Medicaid, said, “I feel blessed. You know because I can honestly say if I didn’t have health insurance and I’m HIV-positive, the meds would be like forget about it; going to the doctor, you can forget about it.”

The report found that many people who gained coverage had been uninsured for several years before gaining coverage because of the ACA. And, that many people who gained coverage through Medicaid and the marketplaces felt more secure, less stressed, and less worried about medical bills.

“Insured participants in this round of research reported using their coverage regularly to meet their HIV care and treatment needs. They reported that their health is easier to manage as a result of gaining coverage… They have found relief and security in being covered,” Lindsey Dawson and colleagues reported.

Experts are worried about its future under a Trump administration and Republican-controlled Congress

“Repealing the ACA could harm millions, double the number of uninsured by 2019, and throw the U.S. health care system into disarray, according to a recent study from the Urban Institute. It could take affordable health care coverage away from 30 million people, including children and working families covered under the ACA’s Medicaid expansion,” said Families USA in a press release.

Although the new Congress and administration may not be able to fully repeal the ACA, it’s possible that the ACA could be largely repealed through the budget reconciliation process, or otherwise have its implementation stalled or challenged. And, said Professor Timothy Westmoreland, from Georgetown University Law Center, Republicans may repeal elements of the ACA (including the Medicaid expansion and subsidy system for the state insurance exchanges) but delay the “effective” date to give them time to come up with a replacement health insurance plan for the country.

“It’s a little bit like the old joke of the dog who chases a bus for years, and then catches it. And says, now what do I do after I’ve caught it? There’s a little bit of that going on here. They’ve got the votes to repeal the ACA, but are stuck thinking, now what?”

A big concern, said Westmoreland, is that the private health insurance industry might stop being a functional economic model—and will enter what health economists call the “death spiral.”

“People are saying that private health insurance might collapse in the U.S., not just for low income people, but for almost everybody,” said Westmoreland.

This might happen, he explained, if Congress repeals the Medicaid expansion and the subsidies provided by the ACA to help low-income people purchase affordable insurance through the state-based exchanges, but doesn’t repeal the health insurance reform laws (like requiring insurance companies to cover people with pre-existing conditions).

“What you’re left with is a private health insurance market both inside the exchanges (if they continue to exist) and outside—but without subsidies to help people buy insurance plans. If there’s no mandate or requirement for people to have health insurance, then many people who are healthy will not buy insurance. And the cost for health insurance will go up. And then more people will drop out. And then it will get even more expensive.”

There will be widespread effects—and people living with HIV will be particularly vulnerable

If elements of the ACA were repealed through the budget reconciliation process, “this would make things worse not just for the 20 million people who have new coverage from Obamacare, but for everybody who has health insurance,” said Westmoreland.

According to an analysis by the Urban Institute, nearly 30 million people would lose their health insurance.

“This scenario does not just move the country back to the situation before the ACA. It moves the country to a situation with higher uninsurance rates than was the case before the ACA’s reforms,” said Linda Blumberg, Matthew Buettgens and John Holahan in the report.

Over 22 million would become uninsured if the health insurance premium tax credits were eliminated, and over 7 million would become uninsured because of a “near collapse of the nongroup insurance market,” the report explained.

If Congress were to repeal the requirement for insurance companies to cover people with pre-existing conditions, 27% of adult Americans under the age of 65 would have the potential to be affected, according to a recent Kaiser Family Foundation report. Said another way, 52 million Americans have pre-existing conditions like HIV, cancer, or mental health diagnoses that would render them unable to buy health insurance under the pre-ACA insurance underwriting practices.

“While congressional Republicans can repeal major parts of the ACA through the reconciliation process, doing so without a concrete replacement could have a devastating impact for the 22 million people currently insured through ACA coverage expansions. This includes 89,000 AIDS Drug Assistance Program clients,” reported the HIV Health Care Access Working Group and Ryan White Working Group.

What can we do to save the ACA?

The HIV Health Care Access Working Group and Ryan White Working Group say that people living with HIV and their health care providers can join efforts to save the ACA and ensure that Americans have access to affordable, non-discriminatory health insurance in the coming years.

Here’s what they recommend.

Join the Federal AIDS Policy Partnership’s HIV Health Care Access Working Group.

In the coming year, this working group will be focused on preserving the ACA in collaboration with other advocacy, service and policy organizations. Email Andrea Weddle at aweddle@hivma.org to sign up.

Share how you (or your client) have benefitted from the ACA.

The more evidence our elected officials have of broad support for the ACA, the less likely they may be to aid in efforts to repeal the ACA. Contact your Senators and Representative and let them know how the ACA has helped you or your clients. Call the Capitol Switchboard at 202.224.3121 and ask to be connected to your Senator or Representative’s offices.

Join health care advocacy coalitions.

Families USA is leading a large grassroots effort to protect the ACA. Participate in an Action Alert, by informing Congress of your support for the ACA here. (Families USA makes it easy to send your support with a pre-written letter template and form you can fill out online.)

Sign the Families USA petition to protect the ACA.


Read Cirrus Wood’s op-ed article about his reaction to the election of Donald Trump, what it feels like as a member of the LGBTQ community, and his pictures from the protests and walkouts in the days after the election.



One Response to Repealing Obamacare will have “devastating” consequences for millions—and many who are living with HIV

  1. Derek says:

    Thanks very much for this important article. New research in Kaiser Northern California also shows how the ACA has lead to significantly increased HIV+ enrollment, with improved rates of HIV control, see below. We need to defend the access to the care provided by the ACA!