The PrEP for Women Initiative is a public-private partnership between the Washington AIDS Partnership and the D.C. Department of Health’s HIV/ AIDS, Hepatitis, STD, and TB Administration (HAHSTA). The initiative aims to increase uptake of PrEP (HIV prevention pill) among women of color through grantmaking which supports integration of PrEP into existing medical services; PrEP and sexual health outreach, education, and training in the community and for community-based organizations and health providers; and a social marketing campaign. The workshop featured a panel of representatives from three community-based organizations funded by the initiative. Participants discussed their firsthand experiences building PrEP programs, including successes and challenges at the patient and organizational levels, and how those have informed their current work. Following is some of what they had to say.
Don’t call it PrEP—say what?
In creating educational programs for women, it was better to begin with sexual health or other health concerns before easing into PrEP.
Telling women they needed PrEP was—in a nutshell—stigmatizing, the presenters agreed. And so did people in the audience.
Ashlee Wimberly, the Washington AIDS Partnership (lead presenter): The women ask, “Why are you pushing this on me?” PrEP is stigmatized. So you have to be careful about how you approach people. [Speaking in an upbeat voice] “PrEP is for everyone!”
Diane Jones, LICSW, Family and Medical Counseling Service, Washington, D.C.: So don’t say PrEP, because it’s [seen as] only for women who need this thing. It’s stigmatizing. Now we don’t call it the PrEP talk.
Rachel Browning, MPH, Planned Parenthood of Metropolitan Washington: We don’t talk about statistics in a community setting [to help the women understand their vulnerabilities]. It’s not helpful. It’s stigmatizing. Let’s not make it a statistics game. Let’s have human interactions.
AW: How do we raise awareness that this is even available? How do we bring it up in discussions around sex so patients don’t feel stigmatized?
DJ: We started with some invitation dinners and then threw in PrEP. They could have stayed for hours—they’re still talking about it. It naturally happens if you just set it up.
Don’t assume that people have the basic information, the HIV 101, because there are a lot of misconceptions out there.
Our first event was a town hall meeting. We had a well-known local personality hosting. We had an expert in from Atlanta. We had gift baskets.
A woman in the audience asked, “How are you able to provide gifts? We can’t with our funders.” Jones said they found funders who would cover the costs.
AW: Our retreats included 10-minute chair massages. Listen, if you have one of these [holding up what looked like a lipstick but was actually a vibrator], you can have a conversation. [She flipped a switch and the audience heard a buzzing sound.]
RB: The one thing I wish we had was a patient advocate to come with us and speak on PrEP.
DJ: I think the patient advocate model is the best model.
Again, let’s put the power of pleasure in the woman’s hands. We don’t have the luxury of being late on any innovation.
About the providers
AW: It’s not enough just to educate about PrEP. Because if you educate women and they go to their doctor and their doctor says, “Oh, that’s not for you,” it doesn’t work. We have to reach out to providers as well.
RB: Training staff was actually the biggest challenge. The fear of not being able to answer every question hurt them from hitting the ground running. They worried about oddball questions—like explaining the 2% side effects seen.
AW: I agree. Primary care providers think PrEP needs to be done by a specialist.
RB: Our key is “just do it.” We’ve got training fatigue. We just had to rip off the Band-Aid. It takes a while. It takes services and training to get providers [knowledgeable about PrEP services]. It takes money. We now have a well-oiled PrEP machine.
David Cornell, MBA, DNP, FNP, AAHIVS, Mary’s Center: Three years ago, when our PrEP program started, our providers knew nothing about it. Our staff knew nothing about it. Now, our CEO says, “If you’re not going to provide PrEP, you’re not going to be working here much longer.”
AW: We need top-down pressure for PrEP in our organizations. If you’re not there yet, find champions within your organization to advocate for it.
RB: We’re doing everyone a disservice if we don’t offer patients PrEP and PEP.
DJ: We were seeing hundreds of women, and I agree it’s a disservice if we don’t provide it.
A black woman from New York City in the audience said, “Providers say, ‘Oh, you don’t need it.’ How did you get providers to that point?” [Other members of the audience said they experienced the same thing in their location.]
AW: Say “harm reduction.” It’s non-siloing as well—take things out of their separate categories. Connect sexual health with overall health.
DC: About 30% of our population is immigrant. How do you talk to them about PrEP when you don’t talk to them about sex? Then we saw a map of hot zones. Should we bring it up around birth control and prevention?
RB: There can be too many layers. Be careful.
DC: We now send them to a PrEP navigator.
DJ: We started with treatment facilities. The providers were saying, “you don’t need PrEP.” So this year we funded Lunch & Learn. One nurse who attended got on PrEP, so don’t assume who should be on it. [There was audible agreement from the audience.] Put it in everything you do. Everyone should be talking about PrEP.