HIV Aids

In Mississippi, Efforts to Fight HIV Epidemic Clash With Health Care Disenfranchisement

In light of the federal government plan announced in February 2019 to end the HIV epidemic in the U.S., TheBody has created a new series called Eyes on the End. This series will include a snapshot of the HIV epidemic in each of the 48 counties, seven states, and two cities targeted within the plan. These profiles aren’t meant to be the definitive story of the epidemic in each locale, but rather—through sharing some basic statistics and interviews with a few key stakeholders—to provide some context for what’s occurring there, and what it will take to end the epidemic in that area.

The Big Picture: HIV in Mississippi

A few key agencies are working overtime to reverse high HIV rates among young gay black men in this poor and conservative state, but getting out the word about undetectable equals untransmittable (U=U) and pre-exposure prophylaxis (PrEP) remains a challenge, especially in rural areas.

Need-to-Know Stats About HIV in Mississippi

  • As of 2016, nearly 10,000 Mississippians were living with HIV—73% of them black, 19% white. (The state is 57% white and 37% black.) The majority are men who have sex with men.
  • The annual number of new HIV diagnoses stayed in the 400s between 2014 and 2018, with the vast majority of cases among African Americans.
  • As of 2016, 28% of those in the state diagnosed with HIV were simultaneously diagnosed with AIDS—versus 21% nationally. In 2014 to 2016, the state also had HIV mortality rates up to two times higher than the national rates.
  • Retention-in-care and viral-suppression rates are both around 50%—well below goals for 2020 set by the Centers for Disease Control and Prevention (CDC).
  • Jackson, the state capital, has the fourth-highest HIV rate among U.S. cities. A study of data from 2012 to 2013 found that Jackson had the highest HIV prevalence rate among men who have sex with men (MSM) of any city nationwide.
  • From 2005 to 2014, the number of infections among men who have sex with men (MSM) in Mississippi increased 59%, with an even sharper increase among young African-American MSM.
  • The state is first in the U.S. for gonorrhea rates and third for chlamydia and syphilis. It is also among southern states that did not expand Medicaid where HIV rates are rising.

Successes and Challenges Facing HIV Service Providers in Mississippi

We talked with June Gipson, Ph.D., Ed.S., president and CEO, and Deja Abdul-Haqq, director of organizational development, at My Brother’s Keeper, headquartered in the Jackson, Mississippi, area.

June Gipson: I’ve been in this role since 2011. Prior, I worked here from 2003 to 2008 as a program manager, then I left to go back to school for my Ph.D. before coming back. My Brother’s Keeper [MBK] came about because Dr. Mark Colomb at Jackson State U., whom I used to work with, was a black gay man who wanted to have a place for the LGBTQ community to go for health care. When he died in 2011, the board voted for me to come back in. At that time, we wanted to broaden our capacity to address the health care needs of all underserved populations, so we went into reproductive health, STIs, teen pregnancy, tobacco prevention.

Tim Murphy: MBK is also known for its research, program evaluation, and policy work, yes?

JG: Yes, we do research and clinical trials, testing medications to treat gonorrhea and chlamydia. As for policy, the longer you do this work, the more you realize that the bigger policy issues can make it hard for you to do anything—so we had to learn who we needed to be friends with.

Our annual budget is $7.5 million, with a pretty good split between foundation money and federal Ryan White and CDC/STD money. Our 340B pharmacy revenues help to sustain a lot of our work, because a lot of our grant dollars are restrictive. You want me to bake the cookies, but the lights need to be on to bake the cookies, and you can use 340B money any way you see fit as long as it’s going back into your programs.

Our staff of 53 people is about 97% African American, 65% women, 4% transgender and nonbinary, 40% LGBTQ. I know about three people on staff who are HIV positive, but it may well be more. We have six sites: Headquarters and community-based programs are in Richland (just outside Jackson), the Open Arms clinic and our research and evaluation center are in Jackson, nutrition and research are in Hattiesburg, and our LGBT Center with telehealth services is in Gulfport.

We’ve seen a little more than 6,000 patients since Open Arms opened in 2013. They’re 90% black, 40% LGBTQ, men and women split equally, about 200 of them transgender. Of the men, about 48% are MSM. One of my proudest days was when I saw a heterosexual black man and a trans woman sitting side-by-side on the sofa [like it was no big deal]. When we first opened, there would sometimes be tension between the hetero men and the trans women—now that’s not even an issue anymore.

As for our gamut of services, we have on-site transportation, a food pantry, case managers, a pharmacy, primary care including mental health. We’re adding dental once we get the space for it. We don’t provide housing directly, but we work on that with some of the HOPWA-funded agencies in Jackson like Grace House and Care4Me. And we do PrEP.

TM: Do you do fun and social stuff?

JG: We have Appreciation Days where we bring out the food trucks and clients can come and eat. One year, Thanksgiving dinner was donated to us. We also host Jackson Black Pride and have card parties and things where people can come and hang out, no HIV testing involved.

TM: Cool. So how would you describe the HIV situation in Mississippi?

JG: I’d say on the progress side, we’ve been offering PrEP since Open Arms opened in 2013, but it’s still been a long haul to get people to understand and trust it, especially when you’ve been accustomed to giving out condoms and then you switch to a medical model. It’s like when birth control first started.

Also, people with HIV are getting older, and we didn’t always see that. About five years ago, we were working on a project that asked for HIV-positive black men over 45, and we drew a blank—we didn’t know anyone. But right now, of our roughly 300 HIV-positive patients, 20% of them are over 45.

TM: Are you taking steps to address that aging HIV population?

JG: We’ve added geriatric screenings for our patients with HIV once they turn 50. And also, in February we’re opening in Jackson, in our old space, an HIV wellness center for our 50-plus patients. We’ll have cooking demonstrations, exercise, TV. It’ll be a place to come hang out and beat the loneliness. When we were doing the assessment on this, the saddest thing I heard was that some older folks would get so lonely they would go sit in the E.R. [just to be near other people]. So any senior can come to the center, but it will be designed for and by the HIV community.

TM: Who would you say bears the HIV burden in Mississippi, and where?

JG: Black gay men and black heterosexual women, even though new infections in women have flatlined. Jackson is the bulk of cases, but also Gulfport and the Delta. Jackson has the highest concentration of black cases, Gulfport is more mixed, and the Delta has the highest population of African Americans in the state and is the most impoverished area in the country. But eastern Mississippi, Meridian, is the least-served area—I don’t think there are any providers, and we’re looking to open a space there.

TM: Has the HIV situation in the state changed in the past decade?

JG: Yes and no. Services have improved, but you still have places like Meridian, where people have to drive an hour and 20 minutes to Jackson. Mississippi has some of the most liberal telehealth laws in the country, and we need them, because people can’t get around. Only a small number of our patients are seen via telehealth. It requires a strong internet connection, and the state’s internet infrastructure isn’t the greatest.

TM: Is there a state plan to end the epidemic?

JG: It’s due from the state to the CDC on Dec. 31. Statewide, 88% of newly diagnosed people are linked to care within 30 to 60 days. MBK’s own rate is 97%. We do same-day diagnosis and linkage to care. Our retention in care is 70% versus 47% statewide; our viral suppression rate is 80% versus 72% statewide.

TM: Where are you most proud to be making progress?

JG: With PrEP. We provide 75% of all the PrEP in Mississippi. We’ve had almost 800 people get on PrEP, 400 so far this year alone, including 35 women. We’ve found that the quicker we get people on PrEP, the longer they stay on it. We’re now doing home visits, and if you test negative, we can start you on PrEP that same day.

TM: What percent of all those in the state who could really benefit from PrEP would you say are on it?

JG: I’d say at least 35% to 40%. I’ve told our staff that we need to double our number of clients on PrEP. Now we add mental health to all our PrEP appointments, because you want to do as much as you can to make sure that someone stays safe. We want our clients to have all the happy sex they want, but when you become infected with HIV at 18 or 19, that changes you.

TM: What do you make of all the research about lower rates of PrEP uptake among young black MSM?

JG: Black folks as a whole have been disenfranchised from the health care system. So when you’re saying, “Come and get a pill,” even if it’s free, that doesn’t mean that I feel like it’s for me if I haven’t been in the health care system. If your primary doc has been the E.R. doc, you’ve been disenfranchised from health care. You don’t know about following up with your appointments. There’s a fear factor. And then [Mississippi] didn’t expand Medicaid. So you can really want everyone to get on PrEP, but that doesn’t mean they’re going to come.

TM: What other things are you proud about?

JG: Being inclusive. We started mainly serving black gay men, but when trans women started coming, we had to learn to do hormone therapy and mental health tailored to them. So we keep growing to match the needs of the communities we’re serving. And that we’re able to do that is a testament to the people who work here. We’ve had to learn hard lessons in six years to the point where we can offer services to anyone who walks in the door.

TM: Where are you most frustrated and challenged?

JG: This thing takes money, and funding streams don’t reflect how we are expanding.

TM: What would you put more money toward?

JG: Staffing. We’re always short-staffed. We don’t have dedicated grant writers, someone to help us pull our data together and paint the picture and help us tell our story, people to take pictures when we have events. Then I’d revisit all our services and see how we can tighten them up and do the process better on the front end. Then I’d look at expansion to be in Meridian. And from there, I’d expand throughout the South, because we have a model that works for organizations that don’t have a lot of money. We’re combining all our grant services to create new services. You’re getting an HIV test that CDC wants and a syphilis test that the state health department wants.

TM: Other areas of frustration?

JG: The importance of wraparound services isn’t respected. A lot of people still have a pull-yourself-up-by-the-bootstraps mentality, think you should be able to find a ride and eat healthy. But if you don’t have transportation, then the nearest store is the corner store. We’re riddled with food deserts. This isn’t easy work to do [in this region]. We’ve been living in Trumpworld for a long time, and now the rest of you [elsewhere in the country] are living in it. It’s a blatant disregard for health care—and I understand why [conservatives don’t fund health care]. Because it’s an equalizer. When people are healthy, they think different, move different, they go to work and school and change how society functions. [This lack of health care is] systemic racism. People don’t have to wear white hoods, because they set up the systems to keep you down.

TM: Are there any stories you would like to tell?

JG: Our clinic is a very beautiful space, intentionally. We wanted to have a place where people who are often treated horribly can have a beautiful experience. We had one patient suffering extreme anxiety who asked the counselor if she could just come to the clinic to sit. It’s blue and yellow, and the sofas are white. It’s a homey place. We did that right.

TM: What has motivated you in your work all these years?

JG: When I started at Jackson State, it was just a job. I really wasn’t around a lot of gay people—not because I didn’t want to be, but because nobody was really out. But my parents never said a bad word about gay people, so I didn’t grow up with this idea that you were wrong or bad because you were gay. I didn’t know until I was in the field how [LGBTQ] people were being treated. I come from the Delta. We’re poor and black. We had enough issues, never mind worrying about “gay.” That never came up. Then [I woke up to homophobia] and was so confused. For black folks to treat other black folks badly when we’ve all been treated so horribly? You think we’d be extremely sympathetic. So once I started this work, I met some of the best people of my life [who happened to be LGBTQ] and it’s gone from there. I met people who impacted me in a very positive way and they became family.

Positive POV: Cedric Sturdevant

We talked with Cedric Sturdevant, 54, of Greenville, who is an outreach specialist at AIDS Services Coalition. He was diagnosed with HIV in 2005.

Cedric Sturdevant: I grew up right next door to Greenville in Metcalfe, here in the Mississippi Delta. As a kid, I was shy. I realized I was different at a very young age, five or six. I liked guys, I wasn’t an athlete, and I hung around girls more. As I became a teen, my attraction to guys grew, and there were periods when I was sexually active with other guys. I wanted to get away, so I left Metcalfe in 1987 to go to DeVry University near Dallas, but I dropped out because I didn’t have the money or the grades to stay. I worked at KFC, eventually becoming a manager, and getting my own apartment.

But a girl back home who I’d been dating—she didn’t know I was bi—had my baby daughter, so in the ’90s, this woman moved to the Dallas area with me, and we got married and had a second daughter. I didn’t mess around outside the marriage, because I was trying to do the right thing. But we split up in the late ’90s [and I came out].

In 2005, I was living in Dallas with my [male] partner of six years, who did a blood drive at work and found out he was HIV positive. We’d never used protection, and I’d mostly been the bottom. HIV had occasionally crossed my mind, but I was ignorant about it. I already had diabetes and thought that I couldn’t get another chronic disease.

I tested positive. The woman who tested me was more emotional than I was, but I wasn’t surprised and asked, “What do we need to do next?” She gave me the information on where to go to start treatment, but we were living in my partner’s hometown and he thought that if we went on treatment, people would find out, and I was in love with him. And living or dying didn’t matter to me at that point, so I was like, “Oh, well.”

But our relationship was already rocky, so soon after we broke up and I moved to Memphis to be closer to my daughters. But I started getting fatigued, losing weight, throwing up everywhere. I went to the doctor but didn’t tell him I had HIV. I still had that fear of rejection, that if I told them, they wouldn’t treat me.

In June of 2006, I got sick at work. Coming home on the bus, I got a call telling me that my ex-partner had died. My family took me to the hospital and they got my fever down, but the next day, all my family came up to Memphis from Mississippi for a good old Sunday dinner, and I threw up again.

So I went back to the hospital, and the doctor told me I had a stomach fungus caused by AIDS. So I came clean to him about my HIV status. He said, “We don’t have to tell your mother,” but I said, “No, she needs to know, because I need prayer.” So I told my mother and she said, “You’re gonna be OK, God got you,” and she stayed with me. That night, I felt like my late partner was trying to pull my spirit in, but I said to him, “Terrence, let me go.” And from that day, I started progressing a bit.

After that, I moved back to Mississippi to my mom’s and reached out to a clinic 50 miles outside Greenville and got on meds. I’ve stayed in Mississippi ever since. I’ve had no major health problems since.

Tim Murphy: How did you get involved in your current work?

CS: At the clinic I was attending, at my first visit, the nurse said, “If you listen to what I say, we’ll get you back [to your old health].” And they did. So after a month, the case manager asked if I would speak publicly about my HIV status. I said, “I don’t know—let me ask my family.” And my mom said that I needed to do that. At my first event at a college campus, I was too nervous to speak, so I didn’t. But the group AIDS Action in Mississippi was affiliated with [the New York City HIV and housing agency] Housing Works and had an event for people living with HIV in Greenwood at the case manager’s church. So I went and got involved. Then the next year was my first year at [the HIV/AIDS Capitol Hill lobbying day] AIDSWatch in D.C.

So in 2008, after I’d been out of work on disability for two years, I applied for and got a job as an outreach worker at MBK in Jackson, where I moved and got my own apartment through housing assistance. I recruited people for CDC-approved HIV interventions like Healthy Relationships. We’d recruit same-gender-loving [SGL] guys to do different prevention awareness trainings, things like how to properly put on a condom. HIV-positive guys would tell me they were not taking their meds “because it interferes with college.” One guy said he didn’t take his meds because he didn’t want people to see him taking them. We got him back into care, but by that point, he was diagnosed with AIDS.

I’d also speak for MBK at different conferences. Then I did a front-page story with the Jackson paper on living with HIV and being an out gay black man. It felt like, “Wow, I’m really doing this.” And I was no longer fearful because it was God who saved me, not man, and I wanted others living with HIV to see me and make sure they took care of themselves.

Then I got a job at Care4Me Services in the Jackson Medical Mall. Under Juanita Davis, I worked at The Spot, a drop-in center for SGL and MSM guys with computers where they could work on schoolwork and resumes, a meditation room, a barbershop room, an HIV testing room and a Big Room where we would do “Man in the Mirror,” where we sit in circles and people look in a hand mirror and ask “Who are you?” We’d have game nights. This was 2017-2018, and we would tell people to go to Open Arms clinic to get PrEP.

Then I moved back to Greenville and worked from home until we got our current office space. We’re educating the community in the Delta, because this area is behind. We’re the poorest part of the state, with the highest incidence rate of HIV. We do research to figure out where to go in the community, we do HIV testing, and we have two groups, one for positive folks, the other an SGL/MSM “chat ’n’ chew.” We’re working on a food pantry. We do peer navigation and collaborate with a lot of the clinics around here. We have community partnerships with places like barbershops where we place condom kits.

This evening we’re going to drive 2.5 hours to do HIV testing tomorrow at East Mississippi Community College. Last night, we went to a boys’ home and did HIV/STI 101 for nine young men. Some of them knew more about condom usage than we thought they would. As for PrEP, one said he’d seen a commercial for it on TV.

TM: Is PrEP catching on in the Delta region?

CS: Slowly. There hasn’t been enough education about it. We have some PrEP providers in the region, but they don’t advertise. We’re hoping to change that. I’m trying to get tele-PrEP in this area. I talked with the state’s infectious-disease director about that.

TM: Where do you feel you’ve made the most progress?

CS: In awareness and education, which hasn’t been easy because there’s no place for SGL guys to go in this whole region, not one bar or LGBT center. Guys will drive two hours to Jackson, Little Rock, or Memphis, sometimes to Atlanta or Dallas.

TM: What is the biggest remaining challenge to kicking HIV in the Delta?

CS: Stigma. It’s a very religious area. Poverty. And the fear that SGL men have of being themselves. Especially in the black community, you have this hush-hush thing that goes back to rape and molestation within families. I would always hear from SGL guys that they were raped in their families or by a family friend or contact.

TM: Is the area changing around its attitudes toward being gay?

CS: Yes, when I go out now, especially in churches, people are realizing that we have SGL people in their churches. There’s a 28-year-old man I’ve known for years whose mother is an evangelist. She spoke recently at a program about finding out her son was gay and trying to put holy water on him and “pray it away,” but then she said that God showed her that she was no better than her son because she was sleeping with married men. So now she says she accepts him for who he is.

TM: What percent of all SGL guys in the region who you know are on PrEP?

CS: I haven’t come across any since I came back to the region—not even on the apps.

TM: Why do you think there is such an apparently low uptake if it is available?

CS: We’re finding out that a lot of people just don’t know much about it. At one college, we’ve done five presentations, more than 20 people per class, men and women, black and white, and lots didn’t know about PrEP and had never gotten an HIV test. And those who do know about PrEP don’t know where to go. So next year we’re starting a campaign, setting up three billboards across the Delta—one about stigma, one about HIV testing, and one about PrEP, all linking back to our agency. We’ve got three funders for it—the Elton John AIDS Foundation, the Southern HIV Impact Fund from AIDS United, and the HIV pharmaceutical ViiV. Also next year I’ll come out from under ASC and have my own nonprofit called PIER, Prevention Intervention Education and Research.

Also there’s stigma surrounding PrEP. If your family knows you’re on it, then they know you’re gay. They might look it up and say, “Hey, that’s an HIV drug.” And it’s about the relationship black men in general have with the medical system. We need more black men on PrEP to talk to other black men. And we need to combat the fear of what PrEP may do to your body, which is being promoted by these lawsuits against Gilead. We have some plans next year to have some young black men on PrEP in Jackson to come to the Delta to speak.

TM: Cedric, what do you make of your life up to this point?

CS: I’m grateful that God has allowed me to take this journey. Because as a kid I was very shy and quiet. God has taken me here for a reason. I’m loving my life. I’m blessed with two daughters and three grandkids who live 2.5 hours away from me in Memphis, so I go there often. As for moving back to the Delta to do this work, I feel it’s something God wanted me to do.

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