Originally published in KQED.

By Lisa Aliferis

April 26, 2013

Public health implications as people who stop taking HIV medications can quickly become infectious.

A major goal of the federal health care law is that millions of people who currently do not have health insurance will have improved access to care. But the massive overhaul is also expected to be widely disruptive, and doctors worry that many people with chronic illness could suffer during the changeover, as KQED’s Mina Kim details today onĀ The California Report.

Kim tells the story of 33-year-old Andrew Solis who stopped taking HIV medications more than a year ago after becoming addicted to methamphetamine while in a “rocky relationship.” He resumed treatment at the Oakland Highland Hospital HIV clinic last October after ending the relationship.

Solis has been able to get back in to treatment fairly easily, Kim reports. But changes coming under the Affordable Care Act could complicate care for clinic patients, says Kathleen Clanon, chief medical officer at Highland Hospital.

From Kim’s report:

“They are all poor basically. It’s been 15 years or so since HIV was really a disease in the U.S. of middle-class men. It’s been a disease of poverty in the U.S., really, for about 15 years now.”

Right now, low-income patients without insurance get their health care paid for by the federal Ryan White program which only covers HIV related care. In order for them to get the full benefits of the Affordable Care Act, they’ll need to move to a more traditional insurance-based care. For starters, they’ll have to first choose an insurance carrier and a primary care doctor and Clanon says, that won’t always be easy.

“Most of the information that goes to people about their choices and how they’re becoming insured is going to come by snail mail, and people who are low-income frequently don’t have stable addresses, and the majority of my patients don’t have regular access to the internet.”

If her patients don’t fill out the paperwork, they will be automatically assigned to a primary doctor — one that Clanon says is unlikely to have a specialty in HIV care. Or worse, she fears her patients won’t tell their new doctor that they’re infected, because of stigma surrounding people with the virus.

“I have a patient that I saw about a month ago, he needed to move in with his mom. However she was so afraid of him that she was making him eat in his room off paper plates that she would then throw away. So stigma will make it difficult for people to fix any weirdness that happens in terms of where they get assigned.”

And people with HIV, Clanon says, don’t have time to be away from treatment.

“Within a week, ten days, two weeks, if you stop taking your HIV medication, the virus comes back. And treatment interruptions are dangerous for people with HIV, they’re dangerous for their health, and they’re dangerous for our whole community because during that time that person is infectious to others.”

Still, the Affordable Care Act earmarks money to deal with all that paperwork. Covered California, the state’s new health insurance marketplace will soon announce grants totaling $49 millionĀ for education and outreach. Much of the money is expected to be awarded to community groups which have extensive networks in ethnic and low-income populations — the very people who might have the most trouble navigating the new system.

The primary goal of that outreach is simply to get people enrolled in a health insurance plan. But Dana Howard, a spokesman with Covered California says these “assisters” will also be charged with helping people directly. “Assisters are there to say, ‘Let’s figure out who you’re seeing. Let’s find a plan that has your network in there and find the one that has the best price,'” Howard described.

Anthony Wright of Health Access, a statewide consumer advocacy group, was a bit more circumspect, saying, “that is the hope” when asked if assisters would help make sure people made it into a plan that includes their current doctor.

In the meantime, Dr. Clanon is moving ahead on her own, Kim reports. Two staff members at Highland’s HIV clinic are becoming experts in the Affordable Care Act. They’re also working with insurance plans to make sure that one of their HIV/AIDS doctors can be listed as a primary care provider.

Again, from Kim’s report:

Clanon says her clinic is ahead of the game, but she worries about clinics in rural areas or clinics with fewer resources. To help them along, Clanon’s been traveling up and down the state talking with other HIV providers about ways to prepare for health reform.

This post has been updated to include a quote and information from Dana Howard of Covered California. It also corrects the amount of money to be granted for education and outreach.

Edited on June 11, 2018.