According to a July op-ed in The New York Times, “the major reason” why over 90% of the 1.2 million Americans who need Truvada (the brand drug used in the U.S. as PrEP), but aren’t receiving it is due to cost (the list price per year is over $20,000). Peter Staley and James Krellenstein, who co-authored the op-ed with physician Aaron Lord, also co-founded Prep4All Collaboration, a group working to make PrEP more accessible by pushing federal agencies to break the drug’s patent. This would, in turn, lower the cost of PrEP and establish public health programs that make the generic drug easy to access. The money saved could also be used for PrEP education and community outreach.
This is all well and good, but just how accessible is PrEP in America today and are the concerns of Staley and his peers warranted?
PrEP is available at low to no cost for those who have access to Medicaid or private health insurance, especially when the private insurance is used in combination with the Patient Advocate Foundation Co-Pay Relief or Advancing Access Co-Pay Program offered by Gilead, Truvada’s manufacturing company. These programs help to cover some of the out-of-pocket costs for patients.
Peter Staley speaks during the GMHC 35th Anniversary Spring Gala.
There are 34 states where Medicaid has been expanded, which includes the District of Columbia. Nevada and Louisiana are on this list, too, an important inclusion since they have some of the highest HIV diagnosis rates in the country.
Those living in rural or remote regions can also access PrEP via Telemedicine so long as they have insurance, which includes Medicaid. Service like PlushCare allow patients to make appointments through a website or app, and see a doctor virtually. They can get a prescription for PrEP without ever having to step into a doctor’s office. Follow-up appointments can be virtual, too, although all lab work must be done in person.
PlushCare is available in 48 states and D.C., and will be available in the final two states—North Dakota and Massachusetts—in about one month, according to Caelan Urquhart, a PlushCare marketing and analytics manager. This method eliminates some of the stigma associated with the regimen, as well as some travel costs since patients don’t need to see a doctor in person.
Many of the 17 states where Medicaid hasn’t been expanded fall in the South, a location that sees the highest rates of new HIV diagnoses in the country. Obtaining PrEP in those states without access to Medicaid or private insurance can be tricky, which is all the more reason to support the campaign to break the patent. But access isn’t impossible in these places and there are organizations helping people to get PrEP.
“We’ll create a solution based on what you come to the table with,” Deja Abdul-Haqq says, in regards to helping uninsured people in the South get Truvada. “But the first thing you have to do is come to the table. And a lot of people are uncomfortable coming to the table because of the stigma associated with PrEP and sex.”
Abdul-Haqq is the director of organizational development at My Brother’s Keeper (MBK), and the clinic Open Arms. Both MBK and Open Arms aim to improve the health of marginalized and minority populations in Mississippi, a state where Medicaid hasn’t been expanded.
Gilead’s Medical Assistance Program (MAP) fills in the gaps for those who are uninsured and are earning less than roughly $60,700 per year for a single person. Even if the drug is free though, there are other costs associated with PrEP, like the doctor appointments and the lab work required every three months. There are also transportation fees to and from appointments, but Open Arms is able to cover these costs, as well as the cost of the drugs for their patients, through a special drug pricing program.
“Most people in the U.S. on PrEP pay zero out of pocket, or close to it,” PrEP educator Damon Jacobs writes to NewNowNext. “The process can be cumbersome, and fighting with insurance companies can be arduous. But between their insurance, Gilead's assistance programs, and Patient Advocate Foundation support, most people in the U.S. can afford PrEP.”
“My Facebook Group, PrEP Facts: Rethinking HIV Prevention and Sex, has been helping people learn how to navigate insurance systems and fight obstructive bureaucracy for five years,” Jacobs says. His group currently has over 20,000 members. “We haven’t ever lost someone due to cost.”
There is another way to access PrEP for those who don’t want to deal with the U.S. healthcare system. It’s possible to order generic PrEP online and comes to about $31 per month. Although it might seem questionable to order drugs from the internet, this method may have helped to reduce transmission rates at four sexual health clinics in London in 2016 by about 40%.
It’s important the acknowledge that $31 per month or even lower out-of-pocket costs can be hard for some to pay, especially for homeless LGBTQ youth, who make up 40% of the total unaccompanied youth living on the streets, as well transgender individuals, one in five of which have been homeless at some point. Given homelessness can often lead to survival sex, PReP access may be particularly essential for these populations.
Low out-of-pocket costs may also be difficult for those living below the poverty line in the South, where new HIV diagnosis rates are high. And as accessible as PrEP may seem from a financial perspective, the ability to navigate a complex system and overcome deep rooted stigma is a privilege in itself.
That said, both Abdul-Haqq and Jacobs believe that the perception that PrEP is pricey could be a big barrier for potential users. If an individual who is at high risk read that op-ed, got the impression that PrEP is reserved for the super rich, and didn't bother trying to secure a prescription, then proper education about PrEP accessibility is lacking. Until the patent is broken, it's essential to spread the word that PrEP is far more obtainable than some might think and there are many ways to access it.