As many celebrated the recent decision to make HIV prevention medication free on most insurance plans, those who are uninsured felt the gap between them and their life-saving treatment widened further.
"The story we keep running into is, it's not just the cost of the pill. It's I now need to go to a doctor every three months to do a check-in, get an STI test and monitor my kidneys. That's really where the cost seems to lie across the spectrum," said Lee Storrow, executive director of the North Carolina AIDS Action Network.
While the cost of medication varies, Storrow said accessing a doctor can be the hardest part of treatment for an uninsured individual, particularly someone who is LGBTQ+.
According to data from the Human Rights Campaign, 17% of LGBTQ+ people do not have health insurance, compared to 12% of their straight counterparts. Transgender people and LGBTQ+ people of color are even more likely to be uninsured.
"We really do as a community have to advocate and push for more tools to get both medications but also broader healthcare access," Storrow said.
He added that helping people find supportive healthcare providers is important as well.
"Especially for folks in more rural communities in North Carolina, you may not have a medical provider in your county who's comfortable talking about PrEP, who's comfortable talking about gay sexuality," he said.
If a patient tried to pay out of pocket for medication, which needs to be taken daily and indefinitely, they could run into massive charges. A search of one of the main name brand PrEP medications on a discount pharmacy website for the zip code 27601 returned prices ranging from $40 to more than $1,200.
"I think that formula of coming up with the price of a medication is very complex and something that I can't even begin to fathom," said Dr. Melissa Haithcox-Dennis, the executive director of the Alliance of AIDS Services of the Carolinas.
She added that pharmaceutical companies will provide medication assistance programs that reduce the cost of PrEP for those who need help paying, and that the Ready, Set, PrEP program through the federal government provides free access to medication. AAS-C also provides what she called "concierge level service," helping folks make appointments with friendly providers, get free STI and HIV testing, and start their treatment journey.
"It can be challenging, especially when you want to have PrEP and you're interested, but unfortunately adherence is low because accessing it the first time is very challenging," Haithcox-Dennis said.
Storrow added that expanding Medicaid would not just help LGBTQ+ individuals get healthcare--it would allow all uninsured and underinsured folks access to medication and doctor's visits they could not previously afford.
"So yes, this is a conversation about sexuality, about LGBTQ identity, about dating, about love, but at its core, this is about accessible health care," Storrow said.
Haithcox-Dennis added reducing the cost of the drug for those who are uninsured or underinsured, lowering barriers to medical care for checkups and STI testing, reducing stigma, and addressing social determinants of health will make medication access, in general, easier for everyone.
"When you have to decide between food and PrEP, a lot of times, most people are going to choose food, right?" Haithcox-Dennis said.
Both she and Storrow said bringing the stigma and shame away from PrEP will be a major step in lowering the cost for uninsured folks, particularly those who are LGBTQ+ and allowing them to get the lifelong treatment they deserve.
Cost of HIV prevention drugs remain high for many despite efforts to fix the problem