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Experts: ACA May Interrupt Short-Term HIV Care, but Long-Term Changes Worth It

California counties large and small are preparing for the transition of thousands of low-income Californians with HIV/AIDS from a federal safety-net program to other programs under the Affordable Care Act.

The federal Ryan White HIV/AIDS Program, enacted in 1990, provides a broad spectrum of therapies, drug remedies and primary care to more than 500,000 people each year, according to HHS’ Health Resources and Services Administration, which oversees the program.

The Ryan White Program is a payer of last resort, meaning that if a patient is eligible for another health plan or program, such as Medi-Cal, the state’s Medicaid program, or the Low Income Health Program in California, that service must be used first.

An estimated 55% of HIV-positive individuals using Ryan White funds are expected to become eligible for Medi-Cal, under the ACA expansion, and an additional 23% are expected to qualify for subsidized coverage under the state’s health insurance exchange, according to a study by the Center for Health Law and Policy Innovation of Harvard Law School and the Treatment Expansion Project. Other estimates range from roughly 60% becoming eligible for Medi-Cal and 30% for private health insurance based on income.

California is the second-highest user of Ryan White funds behind New York, according to California officials. The budget for care in 2012 was $2.4 billion, behind Medicaid, which cost $5.3 billion, and Medicare, which cost $5.4 billion.

Concerns Raised for Sensitive Population

Some health experts and HIV advocates are worried that the transition will create problems for a sensitive population whose health relies on routine care from specialty providers.

Advocates said people living with HIV/AIDS could experience gaps in care as the ACA moves toward full implementation, face the possibility of having to change providers, be forced to pay for expensive antiretroviral medications and experience confusion about the changes that lie ahead.  

“We’re concerned that clients will not know that they’ll have to transition,” said Courtney Mulhern-Pearson, director for state and local affairs for the San Francisco AIDS Foundation. “For Medi-Cal managed care plans, we’re also not clear whether or not the provider networks will be adequate, and we know that for someone with HIV, they have better health outcomes if they’re treated by a provider with HIV experience.”

“Our biggest concern is making sure that people have access to the appropriate level of care,” Mulhern-Pearson added. “That means staying linked to their current provider, maintaining coordinated care without treatment interruptions and having access to HIV medications that aren’t prohibitively expensive. There’s a lot that we’re worried about.”

HRSA spokesperson Elizabeth Senerchia pointed out that while thousands of California residents will move toward another model of health care, the Ryan White Program will remain in place to fill gaps in care.

“It is important to note that the Ryan White HIV/AIDS Program is and will continue to be the payer of last resort,” Senerchia said, adding that individuals currently using Ryan White services will be “expected to vigorously pursue eligibility for all other funding sources.”

San Francisco’s Preparations

In San Francisco, roughly 7,700 uninsured people with HIV/AIDS use Ryan White funds for care, according to the San Francisco HIV Health Reform Task Force.

The task force, which includes Mulhern-Pearson, San Francisco Department of Public Health officials, providers and people with HIV/AIDS, last month released a set of goals and associated policy recommendations that underline the complex policies that must be aligned before Jan. 1. The goals include:

  • Promoting successful community-based interventions aimed at outreach, testing and linkage to care;
  • Reducing barriers to timely, quality, affordable and patient-centered care;
  • Ensuring culturally appropriate patient-centered care;
  • Promoting continuity of coordinated care; and
  • Improving individual and community health outcomes.

Although other counties also are preparing, San Francisco appears to be ahead of the curve in thinking about how the ACA will affect its low-income residents currently served by Ryan White, according to Peter Lee, executive director of Covered California, the state’s health insurance exchange.

“San Francisco has been a leader in providing health care,” Lee said at a recent Covered California town hall meeting at the University of California-San Francisco. He also noted that San Francisco’s potential issues with transitioning its HIV/AIDS population are mirrored throughout the state.

San Francisco last year evaluated the transition of hundreds of residents to the Low Income Health Program and has experience treating the uninsured through the city’s universal care system, Healthy San Francisco. The city plans to hold a series of meetings in October and November to assist people who are transitioning to Medi-Cal or to the exchange.

Mulhern-Pearson said the task force is contacting San Franciscans who will become eligible for Medi-Cal — individuals with incomes lower than $15,000 annually, or 138% of the federal poverty level — to offer application assistance. She said the task force also is beginning to evaluate the health plans that will be offered through Covered California and figure out who will qualify for subsidies.

“Patients with HIV may see charges that they’ve never seen before,” Mulhern-Pearson said. “I think that has potential to worsen the problem because the fees under Covered California, while they are better than we expected them to be, I think they will still be a hardship for many clients who are very low income.”

Among providers and patients, there are more questions than answers, Mulhern-Pearson said.

The response so far has been confusion, she said. “I think people know that health care reform is really difficult — it’s really complicated, and you lose people really early when you start to explain all the complexities. Here, I think it’s really hard for people to understand how they fit into the bigger picture when we’re doing our outreach.”

Los Angeles Concerns Similar to Those in North

In Los Angeles, county officials and advocates are also grappling with how to make the transition smooth.

Last year, 19,915 of the estimated 59,500 people living with HIV/AIDS received care under Ryan White. L.A. officials and advocates have many of the same concerns as their counterparts in the north.

“This is an enormous transition from one funding stream to another,” said Philip Curtis, who oversees the policy and advocacy activities for AIDS Project Los Angeles. “This is only one of the transitions the state is trying to accomplish in the next year. That makes it even more challenging.”

Curtis said many of the potential problems with Ryan White patients experiencing gaps in care, or a loss of their primary care physician, are not yet apparent because the transition is in its beginning stages.

“It will take years for the programs in the ACA to settle in, and we know from testimony from people who dealt with the Massachusetts transition, that these things are cumbersome and don’t happen overnight,” he said. “So in many ways, we won’t know about any specific cases until years down the road. It’s important for us to monitor that.”

Long-Term Benefits

While hiccups in transitioning Ryan White patients could cost more and potentially create gaps in care, there are clear long-term benefits, Mulhern-Pearson said.

“This is what we’ve been fighting for, to have access to stable, comprehensive care for people with HIV,” she said. “So in many ways, the ACA is a huge victory, and it has potential for people to access that more stable and comprehensive care. Ryan White will still be there to fill in the gaps.”

Government officials underscored Mulhern-Pearson’s point that long-term benefits could outweigh some of the short-term problems.

“The ACA is an historic opportunity for people living with HIV, including those currently receiving services through the Ryan White Program,” Senerchia said. “Full implementation of the ACA does not eliminate the need for the Ryan White Program. It will continue to provide the vitally needed services that constitute comprehensive care for people living with HIV/AIDS, which is proven to reduce transmission of the virus.”

Providers and others associated with health plans also said there is potential for long-term benefits for residents living with HIV/AIDS.

“Health care reform will result in better access to care for many people — including those with HIV,” said Mike Smith, executive director for the AIDS Emergency Fund and president of the HIV/AIDS Provider Network. “But it also includes major changes to the way HIV-related medical care and support services will be funded and delivered.”

Andrea Weddle, executive director of the HIV Medical Association, said the long-term benefits are clear, but his organization, which represents health researchers and providers, has significant concerns about the availability of doctors able to provide services.

“In the short term, as people gain coverage under Medi-Cal managed care plans or under the exchange, our primary concern is that their current providers won’t be in the new plan networks,” Weddle said. “This is a huge evolving change to our health care system, and it’s important, but from the provider’s perspective, it’s critical to maintain an effective comprehensive care model along the lines of a medical home. That’s what we’re focusing on.”

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