Interview:
Kate Whetten, Ph.D., M.P.H.
Director, Duke University Health Inequalities Program
Author, You're the First One I've Told, detailing the lives of people with HIV/AIDS in rural North Carolina
What trends do you see in HIV/AIDS infections?
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We're seeing that in the southern states, the deep south - North Carolina, South Carolina, Louisiana, Alabama, Mississippi, and Georgia - the greatest increase in HIV/AIDS in the nation. So while our state and those other states have seen increases of 28 percent, 30 percent, over the last two years, the other southern states and the rest of the nation have seen a leveling off of the disease or increases that are much lower, like 11 percent. The increases are primarily in rural areas.
A large number of people who don't receive other kinds of health care services, so we have a large number of people who aren't being treated for other sexually transmitted diseases and who don't regularly get health care who may not trust their health department, other providers in their area, in other ways and so when you put HIV into this mix it's able to spread very quickly. What we have that's unique in our states is this is a largely heterosexual disease, and so we have one-third of the population here that's female that's infected, and the majority of the people who are infected are very low income.
Your book You're the First One I've Told grew out of research into care for people with HIV.
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I had a grant that was to try to integrate and provide better care for people who were HIV positive. And as we started doing that we realized that even if we put care next door to someone, for many people they wouldn't go to that care.
What we realized was we really did not understand the patient population we were serving in our infectious disease clinics and who were HIV positive. And doing another survey where we just asked questions about social support and distance to care and transportation, that the issues were beyond that and that we really needed to ask people about their lives and ask them about how HIV fit into their lives and why it may not be the priority for them when they're making their everyday decisions. So why taking their medication or getting into care today may not be the first thing they're thinking of. 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? What were your dreams when you were young? What did you want to be? What were your best memories, your worst memories? Tell me about your parents. Tell me about school. What was that like for you? Your siblings? What did your house look like, or the place you grew up in? And then worked toward how does HIV enter your life now?
I expected to find a lot of trauma in the childhoods of people we were talking to because we've seen some of that in urban areas, but I did not expect to see the level of childhood trauma that we saw and heard about.
We found that everyone who we spoke to had experienced some sort of major trauma, often sexual abuse when they were children. And what we know about sexual abuse and when children face trauma often, that brain chemistry changes and children become more anxious, and so what made sense then later on when we learned that is that 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 that some of the antianxiety medications.
It actually acted in their body in a different way and made them feel normal and calm. And the other thing we know about childhood abuse is people who are abused are more likely to engage in high-risk sexual activity. It's a way of taking control of your body and disassociating from your body. And those are the two ways you spread this disease, through substance abuse and through high-risk sexual activity.
We also found there were very few social supports for people, that people lived in small communities but were very isolated. 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.
We had breaches in confidentiality. We had two people who had to move because others in the community found they were HIV positive and they worried about their children growing up and going to school in that environment.
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.
The voices of the people we interviewed come back to me on a regular basis now. They're people we made friends with, who we think about, who I think about, and the stories were very powerful. The people's lives were very powerful.
What challenges do people with HIV face in rural North Carolina?
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The biggest barrier to their care and to their families is the stigma that's there. 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. They don't want to have a case manager come to their house, and case managers can be very helpful in helping get on Medicaid, get income support, things like that, but if you can't have your case manager come to your house because everyone knows that's the HIV case manager and you're not pregnant and you're not elderly, then it makes it very difficult to provide services. People, you can give them brochures about HIV and their medications and things in the clinics, but when they get back to their town they need to throw those away, so stigma is an incredible barrier. And they don't want to use local services, so people do prefer - They will not go to their health department or a local provider - they travel long distances, and that's very difficult when you don't have a car, you don't have regular transportation, and you need to seek care because they know the doctor and the nurses and the staff assistant at the health department.
There was a nurse in the health department who had her patient, we'll call the patient Jane. Both the nurse and Jane had daughters who were the same age and in school together. And the nurse decided that she needed to tell her daughter that Jane was HIV positive because she was worried about the children playing together. Jane had not told her daughter that she was HIV positive, and so the daughter arrives in school the next day and all the kids knew she was HIV positive, and that was one of the families that had to move.
One woman in a focus group said, you know I'd rather roll over dead in bed than go to my local provider because I know what kind of stigma I will face and that my family will face. 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.
We need to talk about people's lives in the context in which they're living. We need to know that all of us engage in high-risk behavior to some extent. Those of us who have families who have children, we've all engaged in some kind of sexual behavior. We need to accept the lives of people who we're living with. We need to stop looking at people who are HIV positive as people who have done something wrong. We need to look at them as people who are chronically ill. We need to understand, and when we get to that point we can start understanding that HIV is a difficult disease to spread other than through sexual activity or through needle use and so hugging someone, living with someone, those activities aren't dangerous. Going to school with a child, as long as you take precautions with blood, there is no danger.
I think the most important thing we need to understand is the people who are infected are people who are rational, who make decisions based on things that have happened in their lives that, if we had lived the same lives they had lived, that we might also be in the same position they're in, and that they deserve care. And they deserve at least our empathy and understanding. I always feel, or I come from a position where if you don't understand the way someone is behaving, it probably means you haven't listened hard enough. And I think we need to start listening hard so we can then start understanding how to stop the spread of the disease. |
