More than 23,000 people with HIV will gain access to healthcare this year because of the Affordable Care Act (ACA), and another 26,000 will get coverage through the expansion of Medicaid by individual states.

Most of these patients have been cared for by the federal Ryan White HIV/AIDS Program. This safety net has provided low-income people with quality HIV care for many years, said John Peller, vice president of policy for the AIDS Foundation of Chicago.

But a paradigm shift in how Americans access healthcare has groups representing doctors who treat people with HIV on high alert. 

Healthcare reform has been fueled by a desire to cut costs. For people living with an illness that requires a lifetime of medications and specialized care, some policy shifts could curtail HIV treatment.

The HIV Medicine Association (HIVMA) and the American Academy of HIV Medicine (AAHIVM) released guidelines this month urging insurance plans to adopt policies to prevent that from happening. Dr. David Hardy, a Los Angeles doctor who sits on the boards of both organizations, told Healthline the groups want to stave off any changes that could lead to the use of less-than-ideal HIV medications.

“At this stage, the pharmaceutical [companies] have done a great job with the medications that keep people alive,” he said. “They are easy to take and non-toxic, but very few are generic. We want to make sure the Affordable Care Act does not end up ignoring the data and research that points to preferred regimens.”

The groups have expressed concern that restrictive drug formularies from insurance companies could result in older, less effective medications being substituted for new ones with far fewer side effects.

“As recognized by Medicare and other third-party payers, antiretroviral medications are not interchangeable and substitutions cannot be made even within drug class,” the guidelines state. “Providers and their patients must have access to the full range of biomedical tools available to suppress this infectious and deadly virus.”

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A resurgence in patients' viral load can not only lead to poor individual health outcomes, but also present a public health hazard. The chances of passing along the virus to another person increase along with viral load.

“This really is a seismic shift in how people with HIV get coverage,” Peller told Healthline. “We need to make sure that what's on paper matches up to the reality and there aren't barriers in place that ultimately are going to worsen individual care or the public health by leading to new HIV transmissions. Market-based plans reporting to Wall Street do not have the public health interest foremost in their minds when they report to shareholders.”

Benefits Vary by State and Insurer

AIDS Foundation of Chicago runs a comprehensive website,, that helps patients navigate the new laws. The site offers specific information for each state because benefits vary widely.

In some states, like California, people with HIV can make as much as $50,000 per year and still receive assistance for medications under the federally funded AIDS Drug Assistance Program, Hardy said. In other states, like Texas, a person cannot make more than $22,000 to qualify, Peller added.

Antiretroviral medications need to be affordable as well as accessible. Without insurance, the medications can cost about $2,000 a month. So a 10 percent co-pay, as opposed to a flat co-pay, results in a $200 monthly out-of-pocket expense, on top of a monthly insurance premium and office visit co-pays.

Some policies don't cover single-tablet drug regimens, which are easier to tolerate and easier for patients to manage, or they may require a 50 percent co-pay, Hardy said.  

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Doctor Consistency Is Key

But it's not just about getting access to the life-saving medications. It's also important for patients to continue to see qualified doctors who can prescribe them, Hardy said. The guidelines urge insurers to allow HIV providers to double as primary care doctors. “HIV [care] is not something that can be done by any doctor, unfortunately,” Hardy said.

Another concern is that HMO-style plans may force people with HIV to go to a primary care doctor and pay a co-pay just to be referred to an HIV specialist.

“It makes absolutely no sense for a plan to put administrative barriers in place that could ultimately cause somebody to just drop out of care,” Peller said. “It's just a waste of resources.” 

People with HIV in Chicago have six Medicaid managed care plans to choose from, but there are no reporting requirements for patient outcomes. Peller said the plans should be required to report the number of patients they treat who have an undetectable viral load. “What carrots and sticks are in place to make sure those plans are focusing on providing HIV care and also protecting public health?” he said.

In March, AIDS Foundation of Chicago plans to launch a nationwide monitoring project to get to the bottom of HIV access problems under the new laws. “When somebody has trouble accessing meds or has a ridiculous co-pay, we want to know about it,” Peller said.

In the meantime, he urges people with HIV to get navigation assistance when they sign up for a new health plan. 

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