Successes and Challenges Facing HIV Service Providers in East Baton Rouge Parish
We spoke with the Rev. A.J. Johnson, CEO and founder of Baton Rouge AIDS Society (BRAS).
A.J. Johnson: When I came to BRP, I worked with the office of public health's STD clinic as a disease intervention specialist, then grew to be director of education for Friends for Life, an agency that no longer exists. But as I was doing that, I saw a need for education on the community level that was not being done by anyone. So in 1998, I started BRAS in my apartment. Total grassroots. I got an old copy machine I found by the side of the road next to a dumpster. I was doing my education programs at churches and at a nonprofit that allowed me to use their space. I was doing basic HIV/AIDS 101 info.
After two years, we got our first grant from the Baton Rouge Area Foundation, which was enough to get us a two-room office for one year. So I said, "Lord, if you want us to really do something, then show me something." And then we got an award from the state office of public health and we've been partners with them ever since.
I'm not living with HIV. When I first started in the field, I was discriminated against because neither I nor anyone in my family was [HIV positive]. I wasn't a homosexual. People asked, "Why is this African-American heterosexual male here?" They actually asked me that. I said, "Because this is where God has placed me." My motto is, "Stop the spread until I'm dead."
Tim Murphy: How would you describe the HIV situation in BRP?
AJJ: Louisiana in general has gone down a bit in the number of new HIV cases. But we still have a high rate of people finding out not only that they're HIV positive but that they have AIDS. I think it's from a combination of late diagnosis and people not doing their prescribed treatment. It's a gumbo of things driving the epidemic here. People thinking, "I don't have it, I feel good, I look good, and I know how to pick my partners based on how they look," and then having unprotected sex. One guy, when I asked him the last time he used a condom, he said, "I'm part of the Nekkid-Headed Bandits." That's guys who don't use a condom and go in raw. Having said that, in the black gay community, getting tested has become more of a social norm. In a social network, people will say, "If you're in our group, you get tested."
TM: Tell us more about BRAS.
AJJ: We have three staffers and three volunteers. We're a testing and training facility. We have an Office of Minority Health contract to do faith-based training, and we've hosted certified training for HIV counselors who work in the field. We bring trainings to various churches and home-health parties. Some HIV-positive folks use our training program to disclose to their relatives. One party had three generations of a family in the same room, and the grandfather said, "I'm so glad you came, because I was so scared to sit next to my grandson [who has HIV]."
We got a grant from Pfizer to do multiple-choice-based community awareness testing. We promised them that at least 60% of our participants would have a 50% increase in knowledge after the test. So we did pre- and post-training testing, on questions like, "If you have only one sex partner, you can't get infected: true or false," or "What four body fluids out of seven can transmit HIV?" or "Medication guarantees people with HIV a longer, healthier life: true or false." About 77% of people failed the pre-training test.
We also have mobile testing out of a trailer in which we offer free HIV, hep C, STD and pregnancy testing, as well as glucose testing to screen for diabetes. We also make house calls. If someone tests positive, then we link them to care at places like HIV/AIDS Alliance for Region Two (HAART), Family Service of Greater Baton Rouge or Volunteer Services of Greater Baton Rouge.
TM: What would your headline on HIV in BRP be?
AJJ: I just did an interview where I said, "Yes, the numbers are going down, but don't get too excited."
TM: How is the PrEP [pre-exposure prophylaxis] situation in BRP?
AJJ: We ask each client who gets counseling and testing if they know what PrEP and if they're interested in it, and then we refer them to agencies that provide PrEP, such as HAART. We have PrEP literature in all our rooms. We get varied responses. A lot of people say they've heard of it but they're not interested in it. In fact, I'd say that less than 10% are interested in it. We don't ask them why. We don't push. But when we test in the gay clubs, we find that a higher percentage of people are already on PrEP, or they're open to it.
TM: What are you most proud of?
AJJ: Being the first minority AIDS service organization in BRP is a big thing for me, especially the work we've done in the faith-based community. It's also big to have been cited by Pfizer for best practices.
TM: What's the biggest challenge?
AJJ: We need more funding to do more testing and training. Not only are people in general not educated about HIV/AIDS, but HIV-positive individuals are not aware of things like U=U [undetectable equals untransmittable]. With more funding, we'd definitely implement more programs in school systems, social groups that deal with kids after school. We have a lot of young teenage homeless kids in the community.
TM: Would you do more PrEP outreach?
AJJ: Possibly. I don't think every sexually active person should get on PrEP, because it's a responsibility. It's not like taking Tylenol. I think we could increase condom use. We've got so many barber shops and clubs, but none of them are providing a safer-sex message. I'd definitely hire someone to do more social networking. One time a girl texted me off my website. I never met her, but through texting, I was able to get her to the STD clinic. What if we could do that with a lot of people? And we don't have any [HIV/AIDS PSA] billboards or bus posters up in our city either, except for some that AIDS Healthcare Foundation put up.
TM: Any personal stories?
AJJ: So much of this fight is about individual worth. So many people don't feel that they're worth protecting themselves. I talked to this attractive young college female. She said she had four sex partners. "What causes you to have four sex partners?" I asked her. She said, "Because they buy me food at Subway." Passing out condoms and clean needles isn't enough. We need to distribute things like food stamp applications and housing information, address the other issues that cause the HIV numbers.
Positive POV: Millicent Foster
Millicent Foster, 59, of Baton Rouge, is a BRAS board member. She was diagnosed with HIV in 2002.
Millicent Foster: I was a crack cocaine smoker. At one point when I was trying to get off the drug, I started losing all my hair, my face and neck turned black, I didn't have the use of my hands and feet, and I started losing my eyesight. I was back and forth to the ER for about a year. Nobody suggested I get tested for HIV. It never came up. It was the last thing in my head. From what I knew, it was only contracted via pregnancy or sharing needles or from white gay men. I didn't know anything about heterosexual transmission, which is how I got it.
So I'm in the dermatology clinic, and the doctor said he had a specialist from New York who wanted to see me, and the specialist asked, "Have you ever been tested for HIV?" And I said, "No, why would I? I don't shoot drugs and I'm not gay." "Have you ever had unprotected sex?" "Yeah, who doesn't?" "Would you be willing to consent to a test?" So I said yes. And tested positive.
I had no reaction at first. Then I go for my first appointment at the clinic in New Orleans. And the nurse says to me, "Oh, you have AIDS. Get your affairs in order, because you won't live to see Christmas." I looked at her and said, "Bitch, get out." I was crying. So another lady came in and I told her what the nurse said. She says, "What? No!" Then she explains to me CD4s, viral load. First, they gave me Bactrim [to treat her opportunistic infections from AIDS]. I ended up in the ICU for three weeks. But within six months of starting HIV medication, everything started to clear up. I went from a 167,000 viral load to undetectable. I don't even know what that skin condition was called.
A few months after I was diagnosed, I lost my daughter in a car wreck. She left me her two-year-old son, so I moved to Baton Rouge and went to an HIV clinic in a little trailer behind the hospital, which has since moved. I was still struggling with cocaine while raising the two-year-old and a teenage son of my own. I wasn't taking my HIV medication, either.
In 2004, I realized that my doctor didn't give a damn if I was dead or alive. He didn't know me even though I saw him three times a year. So I started going to Dr. Waref Azmeh at AIDS Healthcare Foundation, and I've been with him for 14 years. You couldn't pay me to leave this man. At first I lied to him, telling him I was taking my meds, not knowing that my tests were showing I wasn't. After six months, he looked at me one day and said, "Well, you don't want to tell me the truth, so I want you to go home." I got up and walked out.
But that New Year's Eve, I had an epiphany that crack wasn't what I wanted to do anymore. I have a son and two grandsons to raise. So I asked my sons to throw out my crack stuff, and they did. I kicked it myself with a whole lot of prayer and a made-up mind. It was hard in the beginning. I'm a weed smoker now. But anyway, I went back to Dr. Azmeh and he said, "You look different. What's new?" And I told him that I hadn't smoked crack in three months.
TM: Amazing story. So how did you get connected to BRAS?
MF: I did my case management at Family Services. They do an open house every year, and they asked me if I wanted to speak to some newly diagnosed people. I said, "Don't nobody wanna hear about no damn crack ho with HIV," and the lady said, "Miss Millicent, you don't understand. You have an awesome testimony and you are stronger than you think." I'd never told my story publicly, even though I was very inspired by a woman I know who is openly and publicly HIV positive.
So I spoke -- with one of the counselors by my side -- to a room of about 20 people, three of whom I knew, and about a week later, one of my friends called and said, "Have you heard of BRAS? Call A.J. He's always looking for HIV-positive speakers for his prayer breakfasts." So in September 2009, I went with a friend and spoke to a room of about 50 strangers. It was awesome!
After that, I had six invites to speak around town for World AIDS Day. A.J. started the "Keeping It Real" crew -- him, me, and another lady, and we'd go around and speak.
TM: How do people react when you tell your story?
MF: With amazement. Once I was at a youth event at A.J.'s agency. I'm mingling with the youth and they don't know what I'm going to talk about. And I was hugging one of the young women, telling her about my kids and grandkids, and I whispered in her ear, "I'm HIV positive." She backs off and looks at me. I said, "You never know what somebody has by looking at them."
TM: How's the HIV situation in Baton Rouge?
MF: It's gone from a white gay man's disease to taking over the black heterosexual community, especially women. The biggest problem is funding. There are so many agencies here fighting for limited funds. We need more money for education. I talk about PrEP with my gay friends. Most of the hetero women I know say they're not having sex anyway. I push PrEP more with younger women. I say, "You don't know this man." It all starts with getting tested.
TM: What's a typical day like?
MF: I'm retired and on disability. I've had two hip replacements because of the HIV. I'm retired on disability, but I have a part-time, flexible job cleaning offices in the evening. I'm getting ready to go to Atlanta on vacation with my nieces.
TM: How would you sum up your life so far?
MF: It's been an amazing, shocking, adventurous journey. To newly diagnosed people, I'd say, "You can still live your best life, but you gotta want it." I've got my grandsons. I've had a friend with benefits for 15 years, but I'm not dating. When you're HIV positive and you try to date, you get all kinds of weird things. One man said, "No problem" when I disclosed, but then he said, "I don't think you need to speak publicly about this anymore." He was embarrassed. I said, "Baby, I'm not gonna stop being who I am, and if you can't deal with it, you need to move on."