Building Community in Rural Virginia: An Interview With Kim Williams
Most people living with HIV served by the University of Virginia Ryan White Clinic live in rural communities and travel a significant distance to get to and from the clinic. In addition to the distance they must travel to receive care, most patients face additional barriers to care such as HIV stigma, depression, post-traumatic stress disorder, substance use, intimate partner violence, or poverty.
To better support their patients' well-being and ability to stay in care, the University of Virginia created a smartphone app, Positive Links. This app supports people living with HIV by providing a virtual community, tools to help track adherence and wellness behaviors, educational resources, and more.
I was privileged to be able to speak with Kim Williams, an HIV advocate, grandmother, poet, and patient of University of Virginia Ryan White Clinic about her experiences with the Positive Links app.
How did you get engaged with the UVA Ryan White Clinic?
When I moved to Virginia, I needed to have medical care so I could get my labs done and stay on my medication regimen. I just kept hearing, "UVA is a great hospital, UVA is a great hospital." So I would travel about 45 minutes to get there, depending on traffic and weather.
It was excellent there. I appreciated the care. They listened to me. I was very impressed that it was a one-stop-shop. I can get my labs done there, I can get my primary care, I can get my gynecological care all in the same place.
Tell me about your experience with the Positive Links phone app.
I was a little bit leery at first. I was a little bit leery of posting, and of other people that would be on the app.
After using it for a while, I was excited about it. I don't have any trepidation now. It helps me keep abreast of my upcoming appointments. I can check-in to be accountable for taking my meds, my moods, my stress levels. It has also helped me to remain adherent to all of my meds. I have an alarm system on it to take my meds at the same time every night. That alarm kind of saves me.
I have constant contact with my whole care team -- my therapist, my gynecologist, my primary care doc -- without going through the hospital switchboard. I can call them directly
There's an anonymity -- we all have avatars and nicknames. No one knows you by name. It frees you up to be more open and honest. And if we don't hear from someone for a while, we send shout-outs, we take roll call. We say, "Hey, are you okay? We haven't heard from you in a while." It's been done for me, too. And it feels great to know that people out there care about you. You need a support system, and it's a loving place. If I'd have had this when I was first diagnosed, I wouldn't have struggled as much.
We've talked before about your experiences with HIV stigma. Tell me about your journey and where you are now.
When I was initially diagnosed in 2000, first I was shocked. I was in a monogamous relationship for 14 years. I wasn't involved in a lot of risk behaviors, so I thought I was safe. It turned out that they weren't in a monogamous relationship with me. They knew they were positive and didn't tell me.
I found out because I got very sick. I had flu-like symptoms in July. It was not normal for me. When I went to the emergency room, they kept expressing to me that I should see my primary care doctor and ask for blood work. I took the test, and it came up positive.
I fluctuated between anger and depression. At one point, I was contemplating suicide. Without education, I would still think it was a death sentence. Thanks to education from my primary care provider, reading everything I could possibly read, and talking to others, I learned that I could not only live, but I could also thrive.
From the point of diagnosis to feeling comfortable with full disclosure took about 10 years.
Tell me about your efforts to combat HIV-related stigma.
My effort is always primarily to educate. To remove the fear factor. Through education, through my own testimony, to let individuals know that they don't have to fear this. Transparency helps. I believe that a secret is deadlier than any germ. Please make sure to say that this quote is originally from Linda Scruggs!
Anything else you'd like to share?
Thank you for the opportunity. Thank you for coming alongside of us. I do believe that sometime in our lifetime we'll see a cure.
Learn more about the Positive Links program and Kim's experience in the webinar recording Using Warm Technology to Achieve Retention in Care.
Melissa Werner is senior program manager at AIDS United.