‘Obamacare’ creates doubts, concerns – “and hope – for HIV sufferers

ACA could disrupt long-term medical care for HIV-positive people but ensures many will get vital help

A bacterial meningitis vaccination at the AIDS Healthcare Foundation in West Hollywood, Calif., in 2013.
Damian Dovarganes/AP

Bonnie DeAngelis came out of the AIDS epidemic of the 1980s and 1990s — when diagnoses were tantamount to death sentences — emboldened by a constant struggle with her own mortality as she learned to live as an HIV-positive woman.

A key part of that fight was her long relationship with her primary-care physician in San Francisco, whom she continued to see despite moving to Sacramento. That 18-year link ended when the doctor retired, leaving her feeling alone and vulnerable once more to the disease.

“If they knew your whole history, you have to start all over again. That’s such a horrible process,” DeAngelis said, adding that she believes her health never got back on track.

But that process of finding a new doctor — and that fear of losing an established bond with an old one — is now something that many of the well over 1.1 million HIV-positive Americans must face as they adjust to the changes brought about by the Affordable Care Act (ACA), often dubbed “Obamacare.”

Many of these patients now face changing long-term arrangements — something that they say is difficult and upsetting. But at the same time, many other sufferers, who had been ineligible for some forms of coverage or unable to pay exorbitantly high premiums in the past, will find themselves finally able to get coverage.

For both groups, navigating the complex new health care system is likely to be confusing and intimidating, even though it offers long-term gains for managing and treating their disease, many health policy analysts believe.

“They may have to change hospitals, pharmacies,” said Anne Donnelly, a longtime supporter of San Francisco’s HIV-positive community and the director of health policy at advocacy group Project Inform. She added that for many people living for years with HIV, their medical care system had almost become a way of life. “There’s a lot of uncertainty. It’s kind of a natural thing that people face. Anytime you have a disease like HIV, your health care is your lifeline. Anything that presents a change is going to be threatening,” she said.

High anxiety

At a recent HIV advocacy event at San Francisco’s LGBT Community Center, many of the long-term survivors of the epidemic expressed those worries. Some were on Medicare, a coverage plan typically for senior citizens and the disabled, or Medicaid, for low-income people. Some debated the benefits of Medicare versus the types of coverage offered under the new health insurance marketplace.

Donnelly said a common misconception is that the many HIV-positive people she knows who have Medicare will be affected by the new health care legislation. In fact, people with Medicare are already covered and are not eligible for insurance under the ACA.

Others had their medical bills for HIV-related illnesses paid for by the government-funded Ryan White HIV/AIDS Program, which “fills gaps in care not covered by other sources” and funds those who, before the ACA, found themselves entirely uninsured. Those who received their health care coverage exclusively from the program will for the first time find themselves with health insurance but “in a system not tailored directly to them. There’s anxiety about that,” Donnelly said.

There was a deep sense of worry among those in the crowd at the LGBT Center who were eligible for the ACA. Many admitted they did not understand what the legislation means. Countless analysts have noted that the 906-page document is dauntingly complex — not just for HIV-positive people but for many Americans.

History repeating

The key difference for HIV-positive people, Donnelly said, is that epidemic survivors like DeAngelis live with the collective memory of a time when, they say, health policymakers failed to effectively address the crisis threatening their lives. During the height of the epidemic, then-President Ronald Reagan didn’t speak on the issue until near the end of his time in office, speakers remembered at the LGBT Center event. “Then, it felt like we were being ignored,” said Michael Siever, 63, a longtime HIV/AIDS rights advocate. He expressed fears that the insurance programs offered under the ACA won’t fully address the particular health care concerns faced by HIV-positive people.

Government funding for Ryan White will continue, but expensive medications may present a problem for some people receiving coverage under the ACA. Within the California exchanges, there are bundles of prospective plans available. “Every plan has a drug formulary — a drug you can easily access. The plan decides how much you pay,” Donnelly said. But with some plans, HIV-positive people may face paying $250 to $400 for each drug every time they get a prescription filled. “A lot of people now are on single-tablet regimens, but many people take from three to four to five pills.”

For many people, co-pays that they fear could rise to as much as $2,000 a month could lead to financial ruin.

Michael Horberg, director of work on HIV/AIDS issues at Kaiser Permanente, said that although he’s hearing of “some cases” in which that happened, he’s confident doctors and patients will be cost-conscious and aim to “have a better understanding of what the costs of care are.”

Despite the confusing picture, both Horberg and Donnelly maintain that the ACA is a good development for the HIV-positive community and that some people who never had a chance to get health care coverage, outside of programs like Ryan White, can now find coverage for non-HIV-related problems.

“That’s the key point — access,” Horberg said.

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