At the Wize Guy barber shop and beauty salon in New Orleans’ Mid-City neighborhood, three barbers are at work edging up their male customers. On the other side of the salon, a hairstylist works on a female client’s weave while three other women wait their turn.
It’s these women who Catrina Coleman, a health educator for the local nonprofit CrescentCare, is trying to convince to get on PrEP, a category of preventative drugs designed to stop the spread of HIV. Wize Guy is one of a dozen or so salons around New Orleans that Coleman visits in her outreach to women and their stylists about HIV and how to avoid it.
On this day she also turns her attention to one of the men in the shop, who’s taken his young son in for a trim. He tells her he doesn’t need to be on PrEP. Why not, she asks. His response: “Because I’m not gay.”
It’s an answer she’s heard before. For years — decades, really — sex education around these parts has been mostly limited to lectures on abstinence as the only way to prevent STDs, pregnancy and AIDS. And with that has come a myriad of misconceptions around how HIV is transmitted and who is most at risk.
“I can’t tell you how many times people come up to me and say that they’re not a certain type of person, so they don’t need to be on PrEP,” Coleman tells NationSwell. “It’s that level of education we’re dealing with.”
Her outreach efforts are sorely needed, especially in Louisiana, where the state’s two largest cities — New Orleans and Baton Rouge — have ranked in the top five of U.S. metro areas for new HIV transmissions for 10 years running. Some of the infection rates rival those in sub-Saharan Africa, according to the World Health Organization. Though Southern black men who have sex with other men continue to be the most vulnerable population, women make up a quarter of all HIV diagnoses in New Orleans. What’s more, black women living with the virus in the city outnumber their white female counterparts by nine to one.
As a result, CrescentCare and Coleman have turned their attention to the city’s beauty salons, where a lot of black women go to discuss everything from politics to their health issues and family life. The shops operate as de facto community health centers.
“In the black community, women go to their hairstylists for advice, and that’s where they’re also getting their education on health,” she says.
So multiple times a month, Coleman goes to a dozen different salons and sets up a table with fans, pins, condoms and lube, and talks to the barbers, stylists and their clients about the importance of pre-exposure prophylaxis, or PrEP, known in the U.S. by the brand name Truvada.
She has her work cut out for her.
“We’ve had PrEP since 2012, and in certain populations, we’ve seen pretty good reductions, but nationally we are basically status quo. It’s as if PrEP didn’t exist,” says James Krellenstein, co-founder of the activist campaign PrEP4All. “This is a situation where a public health response will work. But there needs to be push to do it — just like we did with polio.
Truvada, available by prescription, has the ability to reduce the risk of HIV infections in at-risk people by more than 90 percent for those who take it daily. It’s been hailed as a miracle drug, but actually getting the pills can be prohibitive for many. Truvada is expensive; a year’s supply costs close to $20,000 without health insurance.
HIV already disproportionately affects poor communities across the South, and the price of the drug is keeping it out of reach of those who need it most. Consider that just 30 percent of PrEP users are Southerners despite the fact that the region makes up more than half of all HIV diagnoses in the U.S. And that’s a hard pill to swallow, especially in light of a recent study that confirmed HIV diagnoses are declining in states with the highest use of Truvada; the inverse is happening in states with the lowest use.
Though it was originally developed to treat people who already had HIV, Truvada is also incredibly effective at preventing the disease. A combination of the antiretroviral drugs emtricitabine and tenofovir, the pill works by forming a barrier around the cells targeted by HIV, which then stops the virus from replicating inside those cells. The medicine doesn’t stay in a person’s system for long, so taking it daily is crucial to its success. Since the drug was approved for preventative use, there have been only two known cases of HIV transmission in Truvada users.
Initially, only a few thousand people took the drug, which is manufactured and sold by Gilead Sciences. That rate soon spiked, with a 523 percent increase in Truvada users between 2012 and 2015. The overwhelming majority of Truvada takers are male; women make up an estimated 7 percent of all users. As the pill’s popularity skyrocketed, so has its sticker price, jumping by 45 percent since it was introduced. That translates to nearly $2,000 for a 30-day supply (Gilead does offer coupons and waives up to $7,200 of copay costs per year).
The CDC has determined that those living below the nation’s poverty level, currently set at $25,100 for a family of four, have the same risk of contracting HIV as people in Ethiopia and Haiti. The issue is even more acute in New Orleans, where more than a quarter of residents live in poverty.
“Now that HIV has moved south, your
risk is really about place. Simply living
in New Orleans, you’re at risk.”
“If there is any example of the dysfunction in the American pharmaceutical system, it is this case,” Krellenstein told NPR in June. “We have the most effective tool for ending the HIV epidemic, and one reason we’re unable to scale up is because it costs so [much] unnecessarily.”
PrEP4All, the activist group Krellenstein co-founded, has been targeting Gilead’s pricing structure through its #BreakThePatent campaign to open up the U.S. market to generic pills. By its estimation, the company has inflated the cost of Truvada by a whopping 25,000 percent.
“HIV used to be a virus where your sexual tendencies or lifestyle was a determining factor of risk, but that’s just not the case anymore,” says says Julia Siren, a nurse practitioner at CrescentCare, which focuses on HIV care, particularly for New Orleans’ poor communities. “Now that HIV has moved south, your risk is really about place. Simply living in New Orleans, you’re at risk.”
And it’s not just geography and poverty that black residents are up against. Funding for marketing PrEP to women has lagged behind that of campaigns for men. The CDC’s grants for AIDS organizations limits funding to address only the most at-risk populations: black men, intravenous drug users and men who have sex with other men. In addition, primary care providers such as OB-GYNs often don’t even know about the drug.
Women here believe that PrEP is designed solely for men, because that’s what the majority of the marketing says. Radio ads and TV spots and billboards on buses — nearly all show “pictures of males using PrEP,” says Veronica McGee, director of Brotherhood Inc., an AIDS nonprofit that focuses on getting members of New Orleans’ black communities tested and aware of their status. “All of our funding streams are male-specific. There are no funding streams for major PrEP programs or interventions geared toward women.”
“We have so many people who think they just can’t get HIV,” Coleman says from her office at CrescentCare, which is just up the block from the Wize Guy salon. “People still think that the only people getting the virus are gay men. They just don’t see it as an issue to be educated on.”
There is one bright spot in CrescentCare’s mission to inform women of their HIV risks. The organization uses geofencing when marketing PrEP to Facebook users who are clients of the same salons Coleman visits. They’ve found that women, especially, are clicking on ads more often and visiting CrescentCare for services. In the first 10 months of 2018, CrescentCare’s social media advertising has translated into more than 3,000 people seeking out their services in the real world.
“Even if we get one person on PrEP, it makes a huge difference,” says Coleman. “That’s one more person protected, and that’s one more dead end for this epidemic.”