|
NC NOW:
HIV/AIDS in Rural North Carolina
In the 20-plus years we've dealt with the HIV/AIDS epidemic in North Carolina, it has changed dramatically. What began as a disease infecting primarily white, gay men now affects everyone - gay, straight, white, black, latino, rich, and poor. There is not a corner of North Carolina that HIV or AIDS hasn't touched. And, new reports show, the disease is spreading rapidly in rural parts of our state.
"Jason"/HIV Positive: The town's beautiful. It's a beautiful town. Of course it's like any other southern town, it's driven by religion and politics.
And, this man, whom we'll call Jason, says he has to keep his HIV status to himself because of possible repercussions to his family.
"Jason": I think probably good ole boys would drive by and yell a few words and the children would probably hear quite a bit at school.
And, researchers say, things like that happen to HIV positive people all across rural North Carolina. Dr. Kate Whetten runs the Health Inequalities Program at Duke University and wrote the book You're the First One I've Told about people living with HIV and AIDS in rural North Carolina. You'll hear parts of those conversations here, as recounted by actors.
Dr. Kate Whetten/Author: We went out and got a random sample of people and spent about eight hours apiece with each one of them, asking them questions like what was your childhood like?
Actor: "Mama was always working, I was always cold and raggedy, and my lazy sisters wouldn't comb my hair. Dirty little raggedy thing running around the neighborhood."
Dr. Kate Whetten: What were your dreams when you were young?
Actor: "I never made any aspirations for myself. I just made sure that my brothers were okay."
Dr. Kate Whetten: What did you want to be? What were your best memories, your worst memories? Tell me about your parents.
Actor: "Yeah, I really do feel like my mama abused me when I was small because I got scars on my legs now from some of the whippins with the switches that she used that had notches and things in it."
Dr. Whetten says every person her team interviewed experienced some sort of trauma as a child - violence, physical abuse, or sexual abuse.
Actor: "But my father, like I said, was an alcoholic. Sometimes when he sexually abused me, I felt like he didn't. Looking back on it now - I can honestly say he probably didn't realize I wasn't Mom."
Dr. Whetten says people who experience trauma as children are often more susceptible to substance abuse later in life.
Dr. Kate Whetten: It makes sense that those people would be more likely to drink alcohol, to engage in different substance abuse because alcohol actually acts in the brain the same way as some of the antianxiety medications. And the other thing we know about childhood abuse is people who are abused are more likely to engage in high-risk sexual activity. And those are the two ways you spread this disease, through substance abuse and through high-risk sexual activity.
She says many rural communities offer little assistance. Jason agrees
"Jason": Options are at a minimal. You have one doctor or one group of doctors, that's it. In the larger cities I would have a choice of 15, 20 and would not have to commute as far.
Jason's case manager, Ramya Gleeson, is almost an hour away in Asheville, which is also where the doctors are. She says transportation to and from the city is just part of the battle for people with HIV.
Ramya Gleeson/Case Manager: If you're in rural North Carolina and you've got mental health concerns or substance abuse concerns, that can be very, very related to the HIV, getting treatment for those issues, because you really want to work with the whole person. As a case manager, you're not just addressing the HIV; you're trying to reduce stress factors in a person's life. And that can involve looking at food, housing, utilities, transportation, medical care.
Dr. Kate Whetten: The men and the women we talked to were thinking about how to get food on the table, how to get electricity, basic living needs, and so it started to make sense why HIV was perhaps not the most important thing in their lives. As one person said, it was the icing on the cake of a bad life.
Actor: "Now that my sickness is here, I just look at it as a resting period from it all."
But everyone we talked to agrees, the single largest barrier facing people with HIV in rural North Carolina is the stigma that still surrounds the disease.
Dr. Kate Whetten: And it is the stigma where people are so afraid to let others know they are HIV positive that when they leave a clinic, they don't want to have the pill bottles that have a name on them if it indicates an HIV medication, so they'll combine their pills into one bottle.
Some people, like Jason, say they don't even go to clinics in their own towns because they're afraid someone will find out.
"Jason": Pretty much the backlash on my children. I'm more afraid of them being discriminated against or teased or whatever for something I did prior to them.
Ramya Gleeson: We have a lot of clients that will not tell their families, that will not tell their church groups, that can't tell their landlords. We do some financial assistance, and confidentiality is probably the most important piece that we try to protect for our clients in doing some of that work because people are afraid of being thrown out of their homes or being ostracized by their church family.
Dr. Kate Whetten: We had a woman who can't sit on her porch anymore because people drive by and throw cans at her and call her the AIDS lady.
Another woman interviewed in Dr. Whetten's book worried what would happen after her neighbor saw her medication instructions taped to her refrigerator.
Actor: "I just held my head down. That's why I'm afraid of because I don't talk to nobody about it. That's what scares me, you know, because she probably went and told someone else. And, see, I don't say nothing about it. They just look at me funny."
The stigma can have severe consequences.
Dr. Kate Whetten: For rural areas until we can attack the stigma about this disease, it's going to be very hard to keep people on their medications, to get care and to prevent the spread of the disease because people don't know their neighbors are positive and they don't know that now we have a new epidemic of young people who are being infected.
Experts agree education is the key to erasing stigma.
Ramya Gleeson: I think education needs to happen in the rural communities. It's been a very difficult community to create awareness in, on all levels, from the medical providers to the church groups to the neighborhoods and to the schools. There's a lot you can't talk about when you go into a school. Everything is very abstinence-based. A lot of schools don't even want the conversation to happen there.
Jason says a new group in his town has started HIV and AIDS education in the community. He says it's a beginning. And he says until the stigma is gone, he wants other HIV positive people to know one thing.
“Jason”: you're not alone.
Dr. Kate Whetten's team also interviewed some rural medical providers who don't know the facts about HIV and AIDS. She says one doctor said he didn't treat people with HIV because he didn't want to put his family at risk. |
