The Well Project is celebrating 20 years of amazing service in educating and creating community for women across the gender spectrum living with HIV. To honor this amazing achievement, I had a fantastic conversation with the dynamic Bridgette Picou, stakeholder liaison at The Well Project, for a recent At Home With broadcast on Instagram.
We spoke about the groundbreaking work at The Well Project, the challenges that all women across the gender spectrum and nonbinary folks face when it comes to HIV issues, and more.
This transcript has been edited for content and clarity.
Charles Sanchez: What is your official capacity at The Well Project? What is your title?
Bridgette Picou: I'm The Well Project stakeholder liaison. I'm a nurse by trade. I do HIV work and advocacy by heart, of course. And so part of what I do is, I like to think of it as bridging the gap between clinicians and providers because I have a dual role and a dual perspective, as both a nurse providing HIV care and then a woman living with HIV. Part of what happens is you want people to buy into their health care. You want people to be a part of their health care.
You want people to take their medication. And then by the same token, you want people to understand what the experience of living with HIV is like. I'm standing in the gap between that to make sure that women can get the best care and that we all kind of understand each other and what's going on.
Sanchez: One of the things that I just learned this year a couple of months ago that has shocked me about women, is that women are not generally tested for HIV as part of your gynecological health, as part of your physical. You have to ask for it. That shocked me. I think it was Brooke Davidoff that told me that. She only found out she had HIV when she got pregnant, and I was floored. Do you mind telling me how you found out?
Picou: Very much the same way. I went for a free gynecological exam. I was telling her my lymph nodes were swollen and that all of a sudden I felt like I was having allergies. And she suggested that we do a whole panel of STD testing, and I was like, "OK." You know, I didn't feel like I had anything to worry about.
And lo and behold, here comes this diagnosis at 40. And it is really unfortunate, tragic, and also very true. One of our programs that we have at The Well Project is called She/Her/They, and it's all about sexual health equity and education.
Part of that is getting more general care practitioners to understand that HIV testing should not just be something that's offered when you're pregnant or should not just be offered because you're walking into a clinic and asking for an STD test. It should be something that's part of regular standard testing. You go in and have your cholesterol drawn, you go in and have your A1C done for diabetes. HIV should be one of those things.
Sanchez: Absolutely. I think one of the other reasons that people get tested is because they're considered high risk. And if you are a woman, you're not considered high risk, necessarily, unless you are a sex worker or something. I'm still shocked that they're treating women so differently in that way. And I'd never heard of it before, so I'm so glad that you guys are out there promoting it and trying to get doctors and professionals to really stand up to it and test people.
Picou: I think it's really important to mention that I hate the word "risk" when it comes to HIV because what I think it does is, No. 1, it assigns blame to people. And No. 2, it gives a false sense of security about who is "at risk."
Anyone who is having sex is vulnerable. That's the word that I like to use: [Anyone who] is [having sex is] vulnerable to acquiring HIV. If you don't know your partner's status, if you don't know your status, it doesn't matter how many partners you have or if you've been married for 30 years. If you don't know what your partner's status is, then that leaves you vulnerable to acquiring HIV. And so assigning risk is absolutely the wrong way to approach testing and prevention and all of that.
Sanchez: And it doesn't matter how many people you've slept with or not, it only takes one. I only have HIV from one person.
Picou: That's exactly correct. Yes, absolutely.
Sanchez: What are the kinds of things that you do on a practical level? Tell me about some meetings that you've been having to bridge these equity gaps.
Picou: So, actually, we just very recently met with NASTAD, and they are the National Alliance of State and Territorial AIDS Directors. They basically work with public health, and so we've been working with them. We have a plethora of information on our website available to people. We have partnerships that we build. As a matter of fact, we have a partnership with TheBody. We try to make sure that through our partnerships, we get reliable information out so that people can reach out to us, visit the website, attend a conference to get reliable information about women as it relates to HIV. We have hundreds of fact sheets.
How I found The Well Project was through their bloggers. We have a blogging platform called A Girl Like Me, where people can come, and you can blog anonymously or you can blog with your full name. When I first started, I was actually anonymous. I hadn't come out about my status publicly, and so that's a platform for women to be able to see other women who look like them, who walk like them, who talk like them. And I like to think of it as reflecting light off of each other because how we acquired HIV may be different, but the experiences on this side of it are very much the same. We're all trying to navigate stigma.
We're all trying to navigate medication. We're all just trying to live the best possible life we can and thrive at the same time, and so that's one of the things that The Well Project does really well.
Sanchez: There have been so many medical advances. This isn't the '80s or the '90s, but still, an HIV diagnosis is devastating if you get it today. I think one thing that's really great about the blogs is you can really find community even if you don't want to talk to anybody. Even if you're not ready, you can find someone, like you said, who looks like you, whether that's ethnicity or gender, you have all different flavors of women on The Well Project blogs. And I just love that. I think that's so important.
Picou: You know, Black women are the most vulnerable group when it comes to women. So it's important that Black women have a space that they can go to where they know that they're not alone. It took me a long time to find The Well Project, and for a very long time, I did feel like I was the only person, the only Black woman I knew that had HIV. And so, it's a very lonely space. So having places that you can go to find out that you're not alone and not by yourself are critical in navigating your journey. And then when you get there and you find information on things like breast and chest feeding, which is our BEEEBAH [Building Equity, Ethics, and Education on Breastfeeding and HIV] program. Women who have HIV don't all of a sudden lose the desire to be a mother. And so questions like, "Can I have children?" or "Can I breastfeed or chest feed when I have children?" [are] addressed through the website, and through all of the advocacy and information that we provide.
Sanchez: I love that. I think the differences in medical advances about breastfeeding and those kinds of informational things have changed a lot in the past, like, 10 years. If a woman is living with HIV, what are the risks regarding breastfeeding?
Picou: It's less than 1%. So if you choose to breastfeed your baby, what we encourage is, we're not saying you have to, we're not trying to force people who don't think it's OK to believe that it's OK. All we're saying is [that] shared decision-making is important between a parent and a provider. The more you talk about something, the more you make the information available, the better choices parents can make. And that's really what it's about. It's less than 1%. And people often say, well, it's still 1%. But that's not how we look at birth control. Birth control is 99% effective, and that's OK. Right? At the end of the day, people think HIV is absolutely the worst thing that could possibly happen to you. And it's not. I am happy, I have a good career. I have a good life. Would I trade it? Absolutely. But is it the worst thing that ever happened to me? No, it's not. It's important that people recognize that there are entire lives just like theirs being lived behind a three-letter or four-letter acronym.
Sanchez: It's not the only thing about you; your HIV status is not everything. I think it's very important to always say, especially to someone who's newly diagnosed, that this isn't going to define who you are.
Picou: Absolutely. It's really important. And when I say women—I want to make it clear because I don't always remember to do so—when I say women, I'm talking about women across the gender spectrum. I tend to think of people as who they want to be, right? So if you are a woman, then you're a woman. I'm not gonna debate with you about who you feel like you are. So when I say women, I mean women across the gender spectrum, and that is inclusive of everyone at The Well Project. And so our services are provided for women across the gender spectrum and inclusive of everyone, including nonbinary people. HIV doesn't have a face, and it doesn't target specific people. It's something that happens. And so there needs to be resources for everyone to go and find help.
Sanchez: You had said earlier that Black women are the most vulnerable to getting HIV in the U.S. Is there a section of the country [where HIV] is more prevalent than other sections?
Picou: Absolutely. The South is the hardest-hit area. And the stigma that surrounds HIV is one of the reasons why we continue to have new HIV diagnoses. The biggest part is stigma, but there's also a lack of education, resources, [and] opportunities that make certain groups and segments more vulnerable to HIV. So obviously, Black gay men are the highest group of persons at risk. All of that comes down to education and stigma. If we can reduce stigma, and if we can get people to understand things like U=U, undetectable is untransmittable—I'm undetectable, my virus is undetectable in my blood, so that means I can't pass my virus on to you through sexual contact. So where, then, is the “risk?” All it is now is it lives in your head and it's the stigma that you've been exposed to for the last 40 years. In places like the South, that messaging is really hard to get across because Black folks don't like to talk about what goes on behind closed doors. We just don't. We're raised with this, “What happens in this house stays in this house” [mentality], and we have to find ways to get past that and move around that so we can get ahead of stigma and get ahead of the epidemic. We can't medicate it away.
Sanchez: It's also a very American thing that we don't talk about sex. Sex education doesn't really happen. I don't have kids in my life, but I learned about sex on the street. And my parents didn't feel comfortable talking with me about it, [and they] certainly would've had no way to talk to me about gay stuff, about anything like that. They just didn't have it in their history, in their lives. But one of the things too, when you talk about stigma and HIV, besides the collective scar of the AIDS crisis that haunts us all, is the fact that when you talk about U=U, [some people say that the] science changed. That's not true. We need to reiterate: Science didn't change. Science got smarter.
Picou: It evolved.
Sanchez: That's what science does. It didn't change. It's just like the medications, the medications didn't change. They just got better. They just got smarter. They just got more effective.
Picou: It always amazes me that people will believe that you can put somebody on the moon, but you don't believe in U=U or basic science. I think COVID set us back quite a bit when it comes to misinformation and disinformation. What people fail to realize is that it was such a rapidly changing thing. It's not that they were wrong; they just didn't know. The more you know, the better you do. And it's the same thing when it comes to how HIV has evolved. The more you know, the better you do. We've evolved, we've moved forward. I always explain U=U like this: I tell people, no, Magic Johnson hasn't been cured, but he's been healthy all of this time. And you look at him and you recognize that he's healthy and living his best life. I certainly don't think you believe that he and his wife have never had sex in the last 30 years. This is U=U at work. It's knowledge.
Each one teach one. So anybody listening today to me who is not a regular follower of TheBody but [knows] me and maybe didn’t know that I was HIV positive, each one teach one moving forward. Continue reading on TheBody...