Texas has the fourth highest rate of HIV and AIDS in the country, according to the Centers for Disease Control and Prevention. A majority of the 86,000 Texans with these conditions live in urban areas, where there’s better access to medical care and a greater chance of avoiding the stigma that can come with a positive diagnosis. But for Texans with HIV or AIDS who live in smaller towns, finding medical care – and human compassion – can be much more difficult.
Wendy Miller moved to Amarillo 14 years ago. She was a single mom of three, working in retail and settling into her new life. Then she went to donate blood, and made an unexpected discovery.
“When I first found out, I was pretty devastated, I was like, you know, wow, what do I do with this,” Miller says.
She was HIV positive.
She was referred to PASO, or the Panhandle AIDS Support Organization, in Amarillo, where she was able to get some assistance – from medical care to help covering the cost of medication and even her rent. But those weren’t the only obstacles she faced.
“I did experience the backlash of stigma, which was quite devastating… Because people just expect you to be a certain way or they expect you to have a certain lifestyle, or they expect you to come from a certain background,” Miller says.
Wendy says she was lucky. She told her parents and siblings, and they supported her.
“I was a single mother, a white woman, and so I didn’t have a lot of the stigma that a lot of clients have,” she says.
Instead, she was able to find a new community at PASO.
Sha’Terra Johnson is the health planner at Resource Group, which distributes funds to small-town Texas clinics. Johnson’s based in Houston, and she says that organizations like PASO are vital for patients outside of urban areas.
“You have city officials that don’t even believe HIV is in their communities, or don’t want to believe HIV is in their community,” Johnson says.
In smaller towns, doctors might not be trained in treating HIV or AIDS, or there may be no doctors at all. The city of Abilene had to put a telemedicine practice in place to provide HIV care. Some patients have to travel great distances for everything from getting a diagnosis to regular lab work.
But by and large, once a person is connected with a community HIV organization, Johnson says, they can get help with medical care, transportation, and housing, and join a support group.
The problem, she says, comes back to stigma. Some people even fear being seen going to their doctor.
“Sometimes that could impact retention in care, people going to their appointments because they don’t want someone that they go to church with to see that they’re going into agency A,” Johnson says.
A woman we’ll call B has experienced a similar fear firsthand.
“I hate to say this but, it’s still like we’re stuck in 1969 or we’re still stuck in 1970 or 1980. This is 2018 and people still out here still feel like, oh, if you give that person a hug you’re gonna catch AIDS,” B says.
B is a personal shopper and mother in Beaumont. She asked us not to use her first or last name because she was afraid of losing her job if her employer found out she was HIV-positive. B moved back to Beaumont, her hometown, from Los Angeles in 2013.
“My mother, she warned me when I came back home. You know…gave me a little tough love,” she says.
B understood what her mother meant when she told her new roommates in Beaumont about her diagnosis.
“You know, everybody was looking at me crazy like I was an alien, or if I was a dog, you know,” B says.
“Out here, in like rural places like Beaumont, in certain places in Texas, they don’t know anything. It’s silent. It’s really silent,” she says.
The most difficult part, she says, is that people don’t know that it’s possible to live a long and healthy life with an HIV diagnosis, and, B told me, sometimes violence is the result. HIV-positive women in the United States experience intimate partner violence at double the rate of the general population, according to the CDC.
Both B and Wendy Miller of Amarillo believe that the way to change that is through education.
Several years after her diagnosis, Wendy began speaking publicly about stigma, and she now works full time at PASO, her local organization. She regularly brings in speakers to educate people in Amarillo.
“If you’re not aware of it, if you don’t know about it, then get educated, get educated, before you start, you know, judging people or shunning people or mistreating people because they have HIV, because that’s not going to change anything, it’s still going to be there,” Miller says.
For B, that starts with her son. He’s only 5, but when he’s old enough, she’ll talk to him about HIV.
“You know, that’s going to be the number one talk, when that time comes, that’s going to be a no brainer. I want him to hear my story, what happened with me, you know because I don’t want that to happen to him or anybody else,” B says.
Since moving back to Texas, B has been getting care through a local community health program, which she says has been a haven for her and others in Beaumont. She often volunteers to talk to new patients about how the organization can help them, too. She tells them they’ll find medical care and educational resources – and it will all be judgment-free