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Silently spreading to the South
by Boitshepo Balozwi
Photo by Jake Halbert // Infographics by Katelynn Santiago
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Twelve years ago, Michael Burks found out he was carrying HIV, the virus that causes AIDS.
“It was horrible,” Michael said. “I didn’t know anyone else who had it. I felt like I was the only one on the planet with it. I figured I was going to die.”
After dating a man for about six months, they had unprotected sex. Michael eventually broke up with his boyfriend and soon found out through his friends that his ex had HIV – and that he’d known about it throughout his and Michael’s relationship.
“I thought people were honest,” Michael said in hindsight.
Michael bought a rapid HIV-testing kit from Walgreens to find out whether he had contracted the virus. The test came back positive. A month later, he went to a laboratory for another blood test, which confirmed he had HIV.
Michael decided to disclose to the people closest to him that he was living with HIV.
“My dad and my stepmom were a bit shocked when I told them about my HIV status. They said it did not change their love for me,” Michael said.
The other person he told about his HIV-positive results was his sister, who he is still in regular contact with.
“We have a good relationship,” Michael said.
HIV and AIDS have been silently spreading to the South because states don’t offer sufficient treatment and education about sexually transmitted diseases.
Michael also found support at HIV Arkansas, a nonprofit organization aimed at providing support for people affected by HIV and AIDS in Northwest Arkansas. Michael is now the director of the organization, which celebrated its 10th anniversary last year.
Michael has been married to Heath Lance for over a year. The couple met nine years ago at a support meeting for people living with HIV, a type of “buddy program.” However, Michael’s relationship with Heath has created distance between him and his parents.
“They do not accept him and never will,” Michael said. “They never want me to mention his name and never want me to bring him around. So, I have chosen not to go around them at all.”
Heath is one of the co-founders and the secretary of HIV Arkansas and has had HIV for 15 years. But unlike his husband, Heath was not surprised when he found out he had HIV.
Heath’s CD4 count, or the number of white blood cells protecting his immune system, was critically low at 103 when he first tested HIV positive – a healthy CD4 count is between 500 and 1500. Without medication to treat and suppress HIV, the disease attacks the immune system and lowers the CD4 count. This makes the body vulnerable to other illnesses like tuberculosis and pneumonia and allows HIV to progress to AIDS.
“My boyfriend at the time had tested positive,” Heath said. “I even remember telling my mother to be ready for the worst when we were at the doctor’s appointment.”
His doctor was a locally renowned HIV physician, Linda McGhee, who works at the HIV Clinic at the Washington County Health Unit in Fayetteville. McGhee has been working in the HIV and AIDS field for over 25 years.
“Dr. McGhee told my mother it was going to be all right,” Heath said. “It made a difference.”
Since Heath began taking HIV medication 14 years ago, the amount of HIV in his blood, also called the viral load, has been undetectable.
McGhee is one of few medical HIV experts assisting the Washington and Benton counties. This limits the access people here have to HIV and AIDS prevention, treatment and care services.
“There are probably only three infectious disease doctors for the HIV patients in the area,” Heath said.
Without adequate medical expertise, people live with HIV and AIDS without knowing they have it.
“We had a woman in our group who almost died of AIDS because doctors did not want to test her because she was not in the high-risk group,” Heath said. “She is from a legal background, and she is white.”
The South is reported to be the new epicenter of HIV and AIDS in the USA. Fifty-two percent of people who were diagnosed with AIDS in 2015 were from the South, according to the latest data from the Centers for Disease Control and Prevention.
During its peak in the U.S. back in the ‘80s, HIV was more prevalent in urban areas like New York City and San Francisco. States with major cities such as New York, Illinois and California still had high and noticeable numbers of people diagnosed with HIV in 2015, according to the CDC HIV surveillance report. States such as Maryland, Florida, Texas and Georgia are in the top 10 state list and contributed to the estimated 39,500 new HIV infections in the U.S. in 2015. There are 1.1 million people living with HIV in the U.S., and 1 in 7 people in the USA do not know they are infected with HIV.
Arkansas, which has a population of almost 3 million, had a total of 5,174 people living with HIV by the end of 2014. It is 30th among the 50 states in regards to HIV diagnosis; the state had an estimated 306 new HIV cases recorded for both adults and adolescents in 2014, and 258 new cases in 2015. One noticeable and worrying trend is that Arkansas is eighth for chlamydia and sixth for gonorrhea diagnoses within the U.S. These STDs are highly prevalent among youth. Someone with an STD like gonorrhea has a higher chance of also being HIV positive. The latest CDC estimates indicate that an alarming 20 million new STDs are expected per year, with youth and adolescents aged 15 to 24 years accounting for 50 percent of this figure. In response to this data, the University of Arkansas Pat Walker Health Center launched the “Get Yourself Tested” walk-in clinic specifically to test for chlamydia and gonorrhea in January 2017.
In 2016, the CDC gave Arkansas $2,322,583 for HIV prevention and control, $1,154,211 for STD prevention and $549,659 for tuberculosis control. Tuberculosis is considered an opportunistic disease, meaning someone living with HIV or AIDS and having a weakened immune system has a higher chance of contracting tuberculosis. Michael revealed that he was granted $10,000 this year through the Arkansas Department of Health’s Community Connector Project for HIV and AIDS education and awareness. HIV Arkansas provides help to people living with HIV and AIDS by helping them find the right doctor or treatment center in the state as quickly as they can.
For the past six years, HIV Arkansas has held annual wellness retreats at Eureka Springs. This year’s retreat was July 20 to 23, and 25 people attended – the majority of whom were white, male and HIV positive. The youngest attendee was a gay, 22-year-old black man.
“The success we have had at our retreats has been phenomenal,” Michael said.
At the retreats, people are taught how to adjust to life with HIV and how to understand the disease. Michael remembered one member of HIV Arkansas calling him daily to be reassured that “It will be okay.” Michael explained how in his situation he had to accept that “I made a poor choice hence I am HIV positive.” Ultimately, it boils down to each individual’s attitude. Life must go on.
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Health (left) and Michael (right) sit together in their backyard. They work at HIV Arkansas and act as advocates for the people living with HIV. Photo by Jake Halbert
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Michael and Heath also coordinate two HIV Arkansas support meetings per month.
This emotional support is provided to the HIV Arkansas group members, most of whom are white, gay men. HIV Arkansas also supports a black woman and a Hispanic woman. Compared to the members of HIV Arkansas, the 2015 CDC report shows that gay and bisexual black men are most affected by HIV and AIDS, with 10,315 new cases reported in 2015. The CDC report also indicates that black women are highly affected by HIV compared to Hispanic and white women, with 4,142 black women newly diagnosed with HIV in 2015.
Another dynamic to the impact of HIV and AIDS is the potential communication barriers posed by diverse cultures. Nonetheless, the HIV issues among the estimated 4,300 Marshall Islanders living in Arkansas have not gone unnoticed. The Washington County Health Unit’s HIV Clinic in Fayetteville has two disease intervention specialists to help spread information about HIV throughout the Marshallese community in Arkansas, the majority of whom live in Springdale. Shelby Osborne and Joe Kaminaga, who is Marshallese, are trained to understand the patients’ culture and use approaches they can relate to, which makes all the difference in whether that person will seek or receive support for HIV.
For example, one of the HIV prevention messages is that people must always use a condom when having unprotected sex, particularly with someone they have just met. But in Marshallese culture it is considered disrespectful for a younger person to speak about sex, particularly with an adult.
Osborne and Kaminaga need to be cognizant of these differences in attitudes and cultures and be able to communicate with community members in a language that they can relate to and understand, including the use of metaphors to replace the word sex.
When Kaminaga was hired, Osborne had only just learned Spanish well enough to communicate HIV and AIDS prevention, treatment and care messages to the Hispanic population. Osborne felt daunted by the idea of learning Marshallese culture and language.
Knowing cultural and linguistic nuances makes the job easier for disease intervention specialists; the idea is to persuade people to work with them and to see the benefit of their program and HIV care services. Aside from providing counseling and follow-up home visits with patients, Osborne and Kaminaga assist patients with administrative steps, such as signing forms consenting to disclose their HIV status to their partners. In Arkansas, it is a felony to conceal an HIV status to a partner. Another aspect to their jobs is finding housing for people living with HIV to limit any public health risks. Political correctness, or not being judgemental and discriminatory, is also key if Osborne and Kaminaga want the patient to be involved in the process.
HIV still has a huge stigma despite the age of the disease and amount of education invested. It is not easy navigating the dating scene for people who are HIV positive. Some social media users hide behind the platform’s anonymity to avoid disclosing their HIV status. The latest online applications like Tinder, Grindr and Adam4Adam enable users to find single people online, and people do not need to reveal their true identity to sign up. Stigma also delays progress, so some people have not disclosed their diagnosis to their families, friends or loved ones.
“If folks could listen and move on from the ‘it’s a gay disease, and they deserve that punishment,’” Michael said.
HIV stigma also affects the impact of HIV Arkansas, which needs volunteers to help run it.
“Folks are also not willing to volunteer for HIV Arkansas,” Michael said.
For someone living with HIV and AIDS, having good and adequate health care is critical. Early detection is key to surviving HIV; the sooner the virus can be detected, the less it will spread in the body unnoticed. Advocates recommend that HIV testing be part of regular wellness checkups that include blood pressure and cholesterol tests. Fortunately for those living with HIV, any proposed changes to the Affordable Care Act – also known as “Obamacare” – will not affect access to treatment, even for people who have lower incomes. The Ryan White HIV/AIDS Program guarantees this.
The Ryan White Program is a concerted effort by the U.S. government to improve and increase the access to HIV care and treatment services for people living with HIV and AIDS. It is named in honor of Ryan White, a 13-year-old boy who was infected with HIV through a blood transfusion back in the 1980s, the onset of the HIV and AIDS epidemic. This program reaches 52 percent of all people diagnosed with HIV in the U.S.
“The Ryan White continues to receive an increase in funding. No risk someone will default on treatment,” Heath said.
One of the advancements in HIV prevention services is access to the pre-exposure prophylaxis or PrEP. PreP is a prescription drug offered to people who are not HIV positive but consider themselves to be at a higher risk of HIV infection; this will allow them to stop the virus from entering and attacking the body. PrEP medication is taken daily to reduce their risk of infection. The CDC reports that PrEP reduces the chance of HIV infection by almost 90 percent. One such PrEP regime is called Truvada. People who fear they have already been exposed to HIV infection can take post-exposure prophylaxis, or PEP, within 72 hours of possible exposure to prevent infection, similar to the morning-after pill that prevents pregnancy.
Michael advocates for access to HIV treatment for all infected people.
“If everyone positive was on treatment, we could end the epidemic,” Michael said.
The optimism that Michael has is based on both his and Heath’s experiences with long-term HIV treatment, which has suppressed their viral load to an undetectable rate, meaning they are not highly infectious and will live longer.
Reaching an undetectable HIV rate and gaining a better quality of life are some of the aims HIV Arkansas has for its members. Apart from sharing information, the retreat also serves as a symbol of support. One of the poignant moments of the retreat is the signing of the HIV Arkansas tree of life.
Heath, who was usually active and helpful, was seated on a camping chair close to the wooden tables, smiling but quiet. Michael reveals that Heath had developed an infection overnight which made him quite ill. Michael’s bright blue but misty eyes said it all – he was worried for Heath. Despite his fear, Lance continued with the morning program. He thanked all the group members for attending the event, giving special mentions to the few volunteers, particularly the “parents” of the group: two board members who are both in their 60s and have a son living with HIV.
Michael handed out goody bags which had silver portable pill holders, condoms, lubricants, water bottles, pens and information booklets. By this point, emotions were running high: members were hugging and crying. In those few days, people developed had been reunited and developed and both good and bad experiences had been shared. HIV Arkansas members smiled and hugged for pictures in bright pink, tie-dyed T-shirts which read, “I’m as happy as a bird with a french fry.”
Then the HIV Arkansas group lined up by one of the camp tables to dip their thumbs in different paint colors to sign the tree of life. There were a total of 19 colorful thumb prints from the year before. Michael and Heath stared at the members from the opposite end of the table, Michael with mixed emotions; he felt a sense of satisfaction in the work he had put into coordinating this event, but the frown on his gentle face revealed the impact of Heath’s sudden illness. Heath looked supportive despite feeling ill.
HIV and AIDS have no boundaries, and they infect and affect people of all races, ages and religion. It remains one of the major global public health problems. The hope is that people will care enough about the disease not to wait until it affects someone close to them before they change their attitudes towards it.
“To a degree things have changed but we absolutely need more mindset changes. So many people just don’t care,” Michael said.
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