By Rachel Crumpler

More than 35,000 North Carolinians are living with HIV, according to the latest available data from the North Carolina Department of Health and Human Services. 

Those folks are living longer, healthier lives, thanks to medicines that treat HIV infection. For many, however, cost is a barrier to getting that treatment. 

Two HIV advocacy organizations say that’s especially true for some potential and current patients covered by the state’s largest insurer, Blue Cross and Blue Shield of North Carolina

The North Carolina AIDS Action Network and the HIV+Hepatitis Policy Institute claim that the insurer is discriminating against patients with HIV or at risk of HIV by charging “enormous out-of-pocket costs for nearly all HIV drugs” in complaints filed last month with the NC Department of Insurance and the Office of Civil Rights at the federal Department of Health and Human Services.

In its 2022 and 2023 plans on the Affordable Care Act health insurance marketplace, Blue Cross NC placed almost all HIV medicines in its most expensive drug categories (known in the insurance world as “tiers”). The few medication options offered at a lower cost cannot be used on their own or are older drugs that are no longer recommended, according to the complaint.

Carl Schmid, executive director of the HIV+Hepatitis Policy Institute, said the insurance company’s current practice of placing the majority of drugs for a medical condition in a high-cost tier jeopardizes access to medications for HIV prevention and treatment in the state. He also said the practice violates the Affordable Care Act’s consumer protections against discriminatory plan design.

Federal officials issued stronger nondiscriminatory plan design protections last May, stating that insurers’ drug lists, known as formularies, “are presumptively discriminatory when all or a majority of drugs for a particular condition are placed on a high-cost prescription drug tier to discourage enrollment by those with that condition.”

That’s what the HIV advocacy organizations believe is happening, and they have urged the state insurance department and the Office of Civil Rights at the federal Department of Health and Human Services to take action to ensure that those living with and at risk of HIV have access to the treatments they need.

Both offices acknowledged that they have received the complaint.

Blue Cross NC spokesperson Jami Sanchez said the insurer is “responding accordingly” to the complaint. She went on to say the company works with state and federal regulators each year to review its plans to ensure that they are compliant with the law and will continue to do so. 

“We take this very seriously and stand against discrimination of any kind, including discrimination based on health status, sexual orientation or gender identity,” Sanchez said in a statement, adding that the methodology used to determine drug tiers for Affordable Care Act members’ medications is consistent across health conditions, using clinical and cost information. 


  • As of Dec. 31, 2021, 35,632 individuals living with HIV reside in North Carolina.
  • In 2021, 1,400 people were newly diagnosed with HIV among the adult and adolescent population, amounting to a rate of 15.7 per 100,000 population.
  • North Carolina ranks 11th among all states and dependent areas for rate of newly diagnosed HIV.
  • The highest rate of newly diagnosed HIV infections is among Black men at a rate of 72.9 per 100,000 population.
  • People living in census tracts with a higher proportion of residents residing below the federal poverty line are more likely to be diagnosed with HIV.

Data from NC DHHS 2021 HIV Surveillance Report

Not a new problem

Schmid said discriminatory plan designs by insurers are nothing new. He said that plans that either don’t cover medications essential to the treatment of HIV, or provide that coverage while requiring patients to pay high out-of-pocket costs, have been a problem for years — one that keeps surfacing. Groups have filed complaints against a plethora of insurers in states across the United States.

A 2015 study found that a quarter of insurance plans the researchers analyzed used discriminatory drug tiering for HIV medications. People covered by these plans paid on average three times more for HIV medications, amounting to several thousands more dollars per year, than they paid in plans determined not to be discriminatory

In 2014, Schmid, then deputy executive director at the AIDS Institute, helped file complaints against four Florida insurers for placing all HIV medications, including generics, in the highest drug tiers, forcing patients to pay high out-of-pocket costs. Ultimately, insurers reclassified many of the medications into lower cost tiers, he said. 

That’s the same outcome Schmid hopes will happen with Blue Cross NC — to see the medications dispersed across tiers for greater affordability.

“That’s a more balanced approach,” he said.

High out-of-pocket costs

Allison Rice, an emeritus law professor at Duke University, said this is not the first year that Blue Cross NC placed the vast majority of HIV medications in the top drug tiers in its Affordable Care Act marketplace plans. In her former role as director of Duke Law’s Health Justice Clinic, she produced annual reports on HIV insurance coverage in the state, tracking insurers’ practices. 

Rice said Blue Cross NC has one of the most costly plans in the marketplace for individuals with HIV.

“Not only do they have their drugs on the top tier, but the cost sharing for those drugs is very high,” she said.

In 2021, the coinsurance for top-tier medication bumped up from 25 percent to 50 percent for most plans. 

“Clearly, when they look at this, their priority is not to allow people living with HIV easy access to affordable drugs,” Rice said, adding that 50 percent coinsurance can be a hefty amount, when an HIV drug regimen may cost a couple thousand dollars per month on average.

In comparison, Rice said, insurers like Cigna, UnitedHealthcare and Aetna have a number of HIV drugs in lower tiers and charge a more reasonable copay.

A Blue Cross NC spokesperson said the insurer pays on average more than 80 percent of its members’ costs for drugs in the highest tiers. She said that when used for HIV prevention, the generic pre-exposure prophylaxis (known as PrEP) drug Truvada is available for no out-of-pocket cost, regardless of it being assigned to a higher drug tier. Under the Affordable Care Act, PrEP must be free under almost all health insurance plans.

Need for affordable medicines

The recommended treatment for everyone who has HIV is antiretroviral therapy, which uses medicines to treat HIV infection. The medicines do not cure HIV but make the disease — once a certain death sentence — into a manageable chronic condition. Taking the drugs also reduces a patient’s risk of spreading the virus to others. 

Without treatment, HIV can gradually destroy the immune system and progress to AIDS, the most advanced stage of HIV infection.

Map showing the rate of people living with HIV per county in North Carolina in 2020. Map credit: AIDSvu , an interactive online mapping tool that visualizes the impact of the HIV epidemic on communities across the United States

Christina Adeleke, policy and communications director at North Carolina AIDS Action Network, is concerned Blue Cross NC is placing needed HIV medicines out of reach for some people, which could jeopardize their health outcomes.

“I can see people making the decision to forgo treatment to make sure their car payments are being made and the rent is being paid,” Adeleke said. “I hate to think of that because, obviously, you need to be alive to live life and you need medications to live life.”

Rice said the high out-of-pocket costs for medications will mostly affect middle-class individuals who do not qualify for federal and state programs that cover the cost of HIV medications.

The HIV advocacy organizations also worry about high out-of-pocket costs widening existing health disparities. According to AIDSvu, Black and Latino residents represent 58 percent and 13 percent of new HIV diagnoses — much higher than their share of the state population — but constitute just 26 percent and 6 percent of HIV PrEP users.

Years of research shows that out-of-pocket costs for patients can create barriers to people starting and sticking with treatment. Cost sharing also has been found to result in higher rates of patients not initiating treatment, in people leaving their medications at the pharmacy once they hear the cost, in decreased adherence and in more frequent drug discontinuation.

Adeleke added that affordable HIV medicines are not in the interest of just those living with the disease.

“If people aren’t in treatment and aren’t able to get virally suppressed, that leaves them in a situation where they’re able to physically transmit HIV to others, which is not what we want,” she said. “For the broader public health of the community, it’s in all of our interest for folks to be able to get in treatment and be able to stay in treatment.”

Even if costs are reduced, Rice said, another problem not addressed in the complaint is the ongoing trend toward narrower provider networks. Some people living with HIV are finding their longtime HIV provider is no longer in the network, meaning they either have to start with a new provider or drop insurance altogether. 

“The Affordable Care Act has really improved access and health care for people living with HIV and so many others, but there’s still some issues,” Schmid said. “That’s why we have insurance commissioners and enforcement actions to take.”

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Rachel Crumpler is our Report for America corps member who covers gender health and prison health. She graduated in 2022 from UNC-Chapel Hill with a major in journalism and minors in history and social...