No longer silent
No longer silent
Experts talk about the impact of HIV/AIDS in Middle Georgia, and how education can lead to prevention
By Jami Gaudet
Photography by Jessica Whitley
Macon Magazine prides itself on “celebrating the good life and great stories.” So, what’s HIV/AIDS doing on the pages of this upbeat magazine? Actually, this is a very good story — about momentous progress in the fight against this lethal virus and the comprehensive, cutting-edge treatment and kindhearted care available in Middle Georgia.
In 1984, the world was shocked when actor and heartthrob Rock Hudson announced that he had contracted AIDS. Hudson died a year later, opening the floodgates for a string of celebrity admissions and deaths. Queen front man Freddie Mercury, virtuoso Liberace, fashion designer Halston, and “Brady Bunch” dad Robert Reed died from AIDS-related illnesses.
HIV/AIDS stoked new fear when tennis great Arthur Ashe and teen Ryan White each died after receiving tainted blood during a transfusion.
White’s fight to remain in high school while battling the disease brought star power to the issue when pop legend Elton John championed his cause, performed at his funeral and called his young friend an inspiration for cleaning up his life.
NBA star Magic Johnson’s HIV disclosure demonstrated that straight men were as susceptible to AIDS as gay men, but when promptly diagnosed and treated, patients can live long, active lives.
In recent years HIV/AIDS has fallen off of our collective radar, in part, because medical advances have transformed it from a death sentence to a chronic condition.
However, for all the good news on the diagnostic and treatment front, local professionals lament the fact that Middle Georgia needlessly lags behind in vanquishing the virus. Despite the availability of services and highly effective pharmaceuticals, people decline to get tested and fail to follow the prescribed regimen.
More than 30 years after HIV/AIDS was first diagnosed in Macon, the original stigma remains entrenched.
For those who contract HIV/AIDS, in Middle Georgia there are no stronger allies or more astute and engaged professionals than Dr. Harold Katner, Dale Wrigley and DeMarcus Beckham.
Katner, an internationally renowned researcher and practitioner, has worked as an infectious disease specialist at Mercer Medicine since 1985. Wrigley, director of Macon’s COMPASS Cares (Community Outreach Medical Pharmacy Assessment and Supportive Services), partners with Beckham, southern field organizer at Georgia Equality and director of development at Reach to Impact Group Inc.
The trio, fiercely determined to prevent, treat and ultimately eradicate the virus share insights into their work and into the complex world of HIV/AIDS.
What’s the current state of HIV/AIDS in Macon-Bibb County?
Dale Wrigley: When I moved here in 2016, it felt like the 1990s. There was an obvious lack of education with clients whose family members were afraid to live in the same house and share utensils. We can end this epidemic. If people are on medication and are virally suppressed, they can’t transmit the virus.
Currently, the FDA is conducting trials on an injectable for prevention that’s administered every eight weeks with little or no side effects and which has been almost 100 percent effective in trials. They’re also making progress on the treatment side. Already, a lot of people take only one pill a day. We’ve progressed tremendously since the 1990s.
Dr. Harold Katner: HIV/AIDS continues to be a major issue. At one time Georgia led the nation in number of new cases and we’re still diagnosing one new case every three to four days in Middle Georgia. And unlike most places, we’re still seeing late stage disease because people are afraid to get tested and treated. Because of the stigma, they don’t want to go into care and once diagnosed they drop out.
We see cases in young people, in the homeless and in many patients who have bipolar disease as a result of sexual abuse. A lot of our patients have comorbidity.
Demarcus Beckham: Thirty years ago, HIV was a death sentence. Today, you can live a full and happy life with the virus. In 2020 we saw an uptick with 126 new cases in the North Central Health District. Obviously, there’s still work to do because Georgia continues to land in the top percentile nationally for the most diagnoses annually. Our numbers have declined, but it’s still an issue.
As a service provider in the HIV/AIDS world, what are your priorities?
Dale Wrigley: Health literacy, to help people understand HIV, how it impacts the entire community as well as the LGBT community, and the changes that are necessary. COMPASS Cares is a welcoming space for everyone, not just for HIV care. We are a health innovation center where patients and the community can come together.
Our focus is education, research, and community partnerships with an emphasis on sexual health and well-being, including health disparities for LGBT, and on increasing virial suppression rates.
Demarcus Beckham: To help people understand that sex is natural. It’s how we’re here. I’m not steering away from abstinence-based education. It’s integral to our cause, but it’s not the only way. When I speak to groups I say, “Sexual activity is about safety and consent. You have one self, one body and complete control to say no to a sexual experience if you feel unsafe. Don’t let anyone make you feel badly about it.”
Harold Katner: My philosophy has always been education based. The HIV/AIDS presentation I gave in Georgia and internationally for more than 25 years was based on consequences. How can someone make an informed decision about their behavior if they don’t know the consequences?
For most people I can prescribe one pill once a day. That’s easy. But it still requires them to take the pill, and the stigma, among other issues, impacts their adherence.
When hearing your presentation in the ‘90s, I remember being taken aback by your assertion that sex education must be introduced as early as fifth or sixth grade — before kids became sexual. Do you still believe that?
Dr. Harold Katner: Yes. In the ‘90s I did those talks for kids in fifth and sixth grade in Houston County, but the bulk of the presentations were for eighth graders. It was a challenging talk and their questions were very honest. Although none were sexually active, a few had been molested. My goal wasn’t to scare kids, but to educate them so they wouldn’t suffer the effects.
In trying to make the presentation understandable and relevant, I tried to convey the impact that cases had on me, like a woman dying of AIDS while holding her baby. Cases like that still affect me and I think I hit the nail on the head because people still stop me and ask if I’m the Dr. Katner who gave “that talk” at their middle or high school. It might have been 10 or 20 years ago, but I’m amazed at how many people remember my presentation and slide show.
Who are your partners and/or allies in your work in Middle Georgia’s HIV/AIDS space?
Dale Wrigley: Reach to Impact, formerly, the Middle Georgia AIDS Network, which now has a much broader scope. We have a strong partnership with Fort Valley State University (FVSU) because black men and college-age students and younger have the most new infections. It’s no different here than in Atlanta. FVSU has a program called Pride Navigator, a five-year project focusing on prevention and care, housed in our pharmacy. The grant covers both Peach and Bibb counties.
We’ve contracted with Mercer Medicine for more than 30 years with Dr. Katner serving as medical director. Last fall we partnered with Mercer on a three-year research grant for rapid initiation to get people on therapy within 24-72 hours of diagnosis.
Even though we’re located in Macon-Bibb County, we partner with all 13 counties in the North Central Health District (NCHD) and each county acts as a feeder. We do telemedicine so clients in other counties can go to their local health department where our provider is linked with their nurse.
If someone tests positive, we have partnerships with federally qualified health centers, which enable them to make an immediate referral, whether for family care or to a community health center. We work with both and they are on our advisory board.
Dr. Harold Katner: Locally, Johnny Fambro and Kathy Dillard initiated the HIV/AIDS work in Macon more than 30 years ago. Johnny founded the Rainbow Center and Kathy, the Central City AIDS network. Eventually they merged.
The HOPE Center, now called COMPASS Cares, is the umbrella organization where Dale Wrigley has taken care to the next level, and he’s seeking other money so if government funding is lost, COMPASS can function as a standalone clinic. Years ago, we were located in a semi-industrial area because patients didn’t want to risk being seen. Today there’s a modern facility on Emery Highway with a new, large annex.
I collaborate on research with a professor at the University of Connecticut on sexual behavior and suppression rates, and locally with Dr. Chinekwu Obidoa, associate professor of Global Health at Mercer University, who studies sexual behaviors that perpetuate HIV. Her research indicates relatively high rates of molestation in our local HIV patient population.
That pain and emotional trauma cause lifelong scars that continue to affect their behavior. When patients drop out of care, stop taking medication or continue to drink, smoke or use drugs, I accept them for who they are with all of their baggage and remain committed to keeping them alive.
Besides the stigma of HIV/AIDS, what are the roadblocks to a reduction in cases?
Dale Wrigley: Finances. Medication is expensive for providers and clinics, even if it’s one pill. It’s fantastic when people live longer with HIV/AIDS, but then we must address co-morbidity and co-core chronic illnesses. That’s a challenge, especially if we don’t provide a particular specialized service and someone doesn’t have insurance.
There are so many challenges, even before we begin care, and we forget that someone whom we consider non-compliant might not have food or adequate housing, so it’s hard for them to take a pill daily for the rest of their lives, and tremendous community stigma still exists.
Dr. Harold Katner: At this point in my life, I don’t have adversaries and it’s no longer an issue, but for 15 years I couldn’t say what I did or where I worked.
Today, the biggest roadblock is patients’ lack of insurance. Because I’m not an expert in other fields, I lean on other doctors who are friends for assistance. They’ve been extremely kind to my patients despite the finances. It’s difficult to manage complicated cases that require other specialists.
Demarcus Beckham: I’m open about my work in prevention and risk reduction. The Southeast has more cases than any other area of the country and I explain Macon’s HIV/AIDS history over the past 30 years to help them understand the necessity of this work.
Atlanta has long been an HIV hotbed. In 2017, Georgia was No. 1 for new HIV cases and fourth in persons living with HIV. What are Macon’s latest statistics?
Dale Wrigley: Considering Georgia’s 18 different health districts, Macon ranks sixth in number of HIV disease cases (HIV and AIDS together). We have more than 100 new infections annually with a lot of people who fall out of care or are intransigent. We’re affected by our proximity to Atlanta. People spend time there, but live here, which causes a constant state of flux. In the last three years, a lot of people have moved to Macon. They come here for care, but with HIV, wherever you’re diagnosed, that’s where you remain a case. So, our numbers could be much higher.
To what do you attribute Macon’s historically consistently high number of cases over the past 30 years?
Dale Wrigley: Lack of education is a risk factor — how it’s transmitted and what it means. The stigma around sexuality is tremendous, which causes people to be silent.
Dr. Harold Katner: I’m still seeing patients in denial or who aren’t compliant. I explain the importance of staying on therapy by saying, “A virus can put DNA in your DNA. Before taking the medicine, the switches were on and you were making billions of baby viruses. Medicine turns off the switches and when you take it daily the switch stays off, the virus stays at zero and your systems heal so you can live a normal life. But if you stop taking the medicine, the virus returns, and when you start and stop medication, the switch breaks and it doesn’t work anymore.”
Demarcus Beckham: Several things. We live in the Bible Belt and Macon has more churches per capita than any other city in Georgia, so religion plays a part. And because of the stigma, people in the LGBT community who are sexually active don’t disclose their status. Macon also has a huge opioid epidemic and needle sharing plays a role.
Geographically, Macon has three of Georgia’s largest interstates. At truck stops and in Macon there’s a lot of sex trafficking, and consequently, a lot of risk. Poverty and lack of education contribute to the number of cases. Schools remain reluctant to educate students about HIV/AIDS, leaving our youth at a disadvantage in the area of self-protection. Schools can teach about HIV and still maintain abstinence-based education.
What’s the most dispiriting aspect of fighting HIV/AIDS in Middle Georgia?
Dale Wrigley: Isolation. Either people are isolated of their own accord or isolate themselves. Also, community health literacy about HIV. People incorrectly think HIV/AIDS doesn’t exist anymore or that it went away.
Dr. Harold Katner: The number of new cases. Every new case is a failure because it means we’re not adequately educating our children or the population. HIV is completely preventable and education is a key. Putting people on therapy means that viral loads should be zero and people shouldn’t be transmitting it. Now we even have a prep clinic to put sexually active people on medication who don’t want to protect themselves.
Demarcus Beckham: I’ve seen people younger than 13 contract this virus. The public needs to understand the severity of the disease. But if we catch it early, it can be managed. STDs like HIV can be treated. It’s all about individuals requesting the resources available.
What gives you the most hope?
Dale Wrigley: Every day there are medical and social advances. I meet wonderful people in the community and at COMPASS Cares who acknowledge that HIV exists and who want to help. We have a community advisory board and the new district attorney, Anita Howard, is a member and the new mayor, Lester Miller, attended the HOPE Center’s grand opening in May 2019.
Dr. Harold Katner: Continuing to promote and teach our children and the community that HIV is for life and it’s expensive and complicated if not managed. It’s critical that we focus on prevention and education. We need to support COMPASS to provide care, which reduces transmission.
We just completed a new study on injections with two shots every month or every two months. It’s been approved in Canada and we’re waiting on U.S. approval. Theoretically, every two months we can give injections to people not properly taking their medication, which is very effective especially for people with adherence issues.
I have a colleague working on an injection that’s once every six months as an experimental protocol. If these protocols are effective, in the future, patients will take a single shot every six months and another shot once a year. All of this simplifies treatment. In the next 10 years, patients could get a single shot every six months and another shot once a year and no pills. That blows my mind.
With a population notorious for not staying in care, it’s my hope that we still can reduce the transmission rate by putting everybody at zero viral loads. I know it’s coming.
Demarcus Beckham: I’ve seen a lot of young people requesting resources and joining the conversation. Churches are supporting work, and colleges and universities are reaching out to me and to my organization. In the last year alone, at COMPASS we saw 1,000 people regionwide seeking help.
What do you want people to understand about HIV/AIDS?
Dale Wrigley: The basics of the virus that we don’t even teach in school very well. We need to start with how you get it, how you don’t and what it means to live with HIV. HIV doesn’t define the person who gets it. It’s one part of what someone is going through or it’s a chronic condition to deal with.
We need community champions to step up and talk about HIV — people living with it and people living with a family member that was or is HIV positive. We want people to advocate that Middle Georgia is a great place to seek services, that Dr. Katner is fantastic and one of the top doctors in the state and around the nation.
Dr. Harold Katner: One of our greatest needs is dentists. Dental care is critical to the management of patients. The No. 1 disease in the state of Georgia in the general population is bad teeth.
If I ran the schools, starting in kindergarten I’d have instruction on brushing and flossing teeth. It’s an enormous, expensive problem and most of our HIV/AIDS patients have bad teeth.
Demarcus Beckham: The need for testing and telling males to wear a condom. I understand why schools can’t do that, but I can and I give them away for free.
I do game nights in local bars, asking questions and awarding prizes. I offer a glimpse into the world of syphilis, herpes and chlamydia. I show how to put on a condom and also a female condom. I don’t sugarcoat it because this is real life and it’s happening to people in their age group and demographic. If people understand how condoms and medications work, we could end the epidemic. But individuals must educate and protect themselves and others.
I have great fear about youth culture and the accessibility of dating site apps like Tinder, Grinder, Bumble, etc. Within an hour they can hook up, and there’s a big hook-up culture in Macon.
One of the first questions people should ask each other is, “When was the last time you were tested and what’s your status?” Everyone should be willing to ask and answer.
You’re speaking about people across the board, not just the gay community.
Demarcus Beckham: Yes, across the board. Most of our clientele is LGBT and people of color, but I can’t tell you how many white, gender-straight males I’ve tested. Maybe they don’t have HIV, but they have some type of STD.
Why is treatment of HIV cost effective as well as prudent public safety?
Dr. Harold Katner: Here’s an example. Without medication, the risk of a mother transmitting HIV to her baby is 1 in 4. With medication it drops to 0. Out of around 400 pregnancies since 1998, two women in Middle Georgia tested positive due to not taking medication properly. Through this clinic, 100 babies have avoided getting perinatal transmission. It costs at least $1 million for a lifetime of treatment for a baby born with HIV/AIDS. So that’s $100 million in cost avoidance in that clinic alone.
We also have a pediatric infectious disease clinic. I work with the high-risk obstetrics clinic to make sure the women are on an appropriate regimen to prevent transmission to the baby, and I follow that infant for 18 months to make sure the baby doesn’t have the virus.
Demarcus Beckham: There’s no reason this virus should be so rampant. We have the manpower, the medications and to some degree, the funding. I don’t understand why local school systems aren’t investing in this education. The outreach services in our 13-county area do our best to provide the range of services needed to prevent and reduce the virus.
Do you believe that people can live a full, rich productive life with HIV/AIDS, if they stay on their medication?
Dale Wrigley: They truly can. Because we can put someone on medication right away, within seven to 10 days we can reevaluate and probably get them to viral suppression in weeks if not days.
Dr. Harold Katner: I have a “70s and 80s Club,” people who have had HIV/AIDS for 20-30 years who faithfully take their meds and are doing fine. They’re going to die of old age, not of old AIDS.
Demarcus Beckham: I’m an advocate, a black LGBT individual, but not positive. I look at the numbers and think, that could have been me. But, I’m educated and have the means and power to help and protect. It’s important to take care of each other. I can’t watch another brother or sister pass away when HIV is so treatable and manageable. I listen to people who lived through the ‘80s and ‘90s and lost people they loved. It took people who weren’t part of the LGBT community or minorities to contract the virus to make progress.
Basic Facts About HIV/AIDS
- HIV is a retrovirus, which can be managed but not cured with anti-retroviral therapy.
- HIV isn’t an airborne disease and is spread solely through body fluids — unprotected sex, contaminated blood transfusions, hypodermic needles and from mother to child during pregnancy, childbirth or breastfeeding.
- Symptoms vary depending on the stage of illness.
- Viral suppression is the key to avoiding transmission. If someone is virally suppressed, there is little or no chance of transmitting the virus. Viral suppression is achievable by taking medication as prescribed by a physician.
- Most people living with HIV tend to be most infectious in the first few months after being infected, but many are unaware of their status until later stages.
- Testing is readily available in Middle Georgia with same-day results.
Profile of 2018 HIV/AIDS Patients in Macon (latest statistics)
92 male, 36 female
106 black/non-Hispanic; 16 white/non-Hispanic
58 are age 20-29; 28 are ages 30-39; 21 are ages 40-49
48 male-to-male sexual contact; 45 unknown; 32 heterosexual contact
COMPASS Cares HIV/AIDS SERVICES
COMPASS Cares, the former HOPE Center, now in its 31st year, is the Ryan White-funded HIV/AIDS clinic and serves North Central Health District’s 13 counties. COMPASS Cares is located at 180 Emery Highway in Macon and can be contacted at 833-789-5302.
- On-site pharmacy open to patients and the public, and specialty pharmacy focusing on HIV and Hepatitis C
- Health innovation and planning center
- Office space and facility rental
- Research conducted by Fort Valley State University, Mercer University and the University of Connecticut
- Conference center and gym for clients and community
- Food and clothing pantry
- Computer education lab