For Kenneth Freeman II, the little blue pill is just part of his daily routine – he takes it at lunch, usually with a salad.
The 33-year-old Durham social worker has been taking the drug PrEP, a daily pill that prevents HIV, for seven years.
“I’m a staunch supporter of PrEP, because I am a witness,” Freeman said. He started taking it while dating a man with HIV.
Durham County has the fifth-highest rate of new HIV infections in the state. The county had an annual average rate 27.4 new HIV cases per 100,000 people from 2014 to 2016. The average annual rate for the state was 16.1 cases.
Nationally, African American men and women accounted for 44 percent of HIV diagnoses in 2016, even though they only make up 12 percent of the population, according to the Centers for Disease Control and Prevention.
But many are not on the drug that could lower this number.
In 2016, 500,000 African Americans could have benefited from PrEP, based on CDC guidelines for who is at higher risk for contracting HIV. But only 7,000 filled prescriptions for the drug, according to the CDC.
Black men who have sex with other men have a one in two chance of getting HIV, the virus that causes AIDS, in their lifetime.
Of the 300,000 Latinos that could have benefited from the pill, 7,600 filled prescriptions.
“There is such a thing as HIV prevention, and it doesn’t just come in a condom,” said Miguel Hunter, executive director of the Triangle Empowerment Center.
PrEP is for people who are at a high risk for HIV: people having sex with people who are HIV positive, or who are unsure of their status and don’t use a condom; or injection drug users who share needles, according to the CDC.
The drug reduces the risk of getting HIV from sex by over 90 percent, and by over 70 percent from injection drug use. It only prevents HIV, not any other sexually transmitted infections, so users should still wear a condom.
Doctors and community organizers find they need creative approaches to reach those who need PrEP the most.
The Duke PrEP clinic, founded in 2016, advertises on Grindr, a dating app geared toward gay and bisexual men.
“That’s actually been our most successful referral tool,” said Dr. Mehri McKellar, medical director of the clinic. She noted that she sees more white patients through Grindr, while more black patients are referred by community groups.
The clinic has helped 200 patients get on PrEP since opening, though all the patients may not still be on the drug. Some PrEP users take the pill only while sexually active, or may not come back for follow-up appointments.
Terry Munn and Miguel Hunter founded the Triangle Empowerment Center in Durham in 2010, when they started handing out condoms from the back of their car. Now, they work on a number of issues, including housing and PrEP, primarily serving minority men having sex with other men.
“We realized there was a gap in understanding beyond the condom,” Munn said. They started hosting interventions, mostly potlucks or pizza or skate parties where they talked about safe sex and started doing nontraditional testing for HIV.
“A lot of times the positive people were bringing their negative lovers,” Munn said. “We were like, they want to get educated too.”
The center now helps people get on PrEP, telling them which clinics provide it and what paperwork they need. This year, it helped 72 African Americans, including about six transgender women, get on PrEP for the first time.
Will Grant, a 24-year-old medical student at Duke, started PrEP last year after learning about it online.
“Regardless of my sexual partner’s HIV status, it was still a protective measure I wanted to utilize, since I had access to it,” he said.
Grant thinks the cost of the drug and of health care in general keep more people from taking PrEP.
PrEP costs over $1,500 a month. Insurance and payment assistance programs can lower the cost, but some insurers hit patients with high deductibles.
Gilead Sciences, the manufacturer of Truvada for PrEP, offers a copay coupon of up to $4,800 a year. On Sept. 1, the coupon limit will increase to $7,200 a year.
It also provides Truvada for PrEP for people without insurance, and helps connect clients with health care plans if possible.
Truvada, approved by the Food and Drug Administration in 2012, is currently the only pill for PrEP on the U.S. market.
But the Gilead program does not cover doctor’s visits. PrEP users have to go to the doctor every three months to get HIV tested.
McKellar said some patients face high deductibles for their first screening for PrEP, and she can’t always tell them exactly how much they’ll have to pay. “We manage and get through and get the person on PrEP, but it definitely takes some time for us,” McKellar said.
The N.C. State Health Plan, insuring over 700,000 people, covers PrEP at Tier 2, or as a preferred brand drug. The copay for a 30-day supply is $30 or $47, depending on the plan.
Blue Cross and Blue Shield also covers Truvada, but copays vary from plan to plan. The company covers PrEP at Tier 2 for commercial plans, but at Tier 5, consisting of “the highest-cost prescription drugs,” for their health insurance marketplace.
Lincoln Community Health Center partners with the Durham County Health Department, and has provided PrEP for roughly 150 patients.
“The message needs to be ... we have this fantastic, highly effective medication that we can probably figure out how to get into your hand, regardless of your insurance,” family nurse practitioner Destry Taylor said.
Depending on income level, visitors to the clinic may be eligible to lower their copay to $5 for each follow-up visit to test for HIV.
Jesse Bennett, statewide overdose prevention coordinator for the N.C. Harm Reduction Coalition, said states should provide PrEP for free. Florida started doing it this year.
“I work in an industry where we provide naloxone to everyone for free, but we can’t get the state to provide PrEP for free, and that’s problematic,” he said. Naloxone is used to reverse opioid overdoses.
Getting the word out
After Freeman and his boyfriend broke up, he stayed on PrEP.
“It was like, better safe than sorry,” he said, of his decision to start taking the drug. “I wasn’t necessarily in a place where I needed to know everything about the person I was sleeping with, so PrEP was that added layer of protection for me.”
But getting the word out about PrEP can be difficult.
“People in the South don’t talk about HIV and about the need to prevent it,” said Dr. Barbara Johnston, chief of HIV services at Lincoln Community Health Center. About 46 percent of people with HIV are living in southern states, according to the CDC.
“There’s this taboo that comes with using medications in many different communities and cultural groups,” agreed Kamaria Faison, a case worker at Lincoln.
Faison calls each patient who misses an appointment for PrEP and mostly succeeds in getting them back in.
The Triangle Empowerment Center uses those who have been on PrEP for a while to encourage others to get on PrEP.
“PrEP is our gospel,” Munn said. “It just don’t get any better than that until the cure.”
Want to know more?
The Triangle Empowerment Center hosts a monthly TriPrEP meeting, open to anyone who wants to know more about PrEP in the Triangle area. For meeting locations call 800-806-3558 or email firstname.lastname@example.org.