Miracles and Stigma: A World AIDS Day Conversation

World AIDS Day 12/01/2015

Ayogo Interviewed Dr. Hightow-Weidman for World AIDS Day, December 1, 2015.

Miracles and Stigma – World AIDS Day Conversation with Dr. Lisa Hightow-WeidmanDr. Hightow-Weidman is an associate professor of medicine in the UNC Institute for Global Health and Infectious Diseases, University of North Carolina-Chapel Hill. For the past 15 years she has been engaged in clinical and behavioral research focusing on HIV among men of color in the southeastern U.S. Dr. Hightow-Weidman’s research interests include primary and secondary HIV prevention interventions for gay/ bisexual/ non-identifying men using both the Internet and other technologies (e.g. mobile phones, SMS texting), adolescents, acute HIV infection, and linkage and retention in care for young men of color.

Ayogo: Tell us a little about what attracted you to the work of preventing HIV, treating and preventing the spreading of HIV.

Dr. Hightow-Weidman: I did my medical training at the University of Virginia. I was always interested in infectious diseases. One of the first patients I had as a medical student was a young man with AIDS. He had an infection called ‘Cryptococcal Meningitis’. He was a gay man without the support of his family. He was in the hospital and he was dying. Alone.

As a medical student this struck me from the medical viewpoint that he was dying from an infection his immune system couldn’t treat, but also from the social aspect. This was a young guy, not much older than I was, and he was dying in the hospital alone because his family didn’t support the life he was living and the love he had for other men. That experience really got me hooked on being involved in this field. First as a medical provider and then as a researcher.

Ayogo: 15 years is a long time to be active in this field. What were some of the challenges you faced when you first started and compare that to where we are now?

Dr. Hightow-Weidman: The best way to capture the change is to reflect on the medicines.

When I first started as a Fellow we treated patients with regimens of six or seven pills, twice a day, with a lot of side effects. Over the years, we’ve made such significant advances that now, a newly-diagnosed person will start on one pill a day. And this one pill is often  really well tolerated. People just do extremely well.

The lifespan for a person newly diagnosed today is the same as for you or I. HIV has become a chronic, manageable disease. That’s the biggest advancement in the field.

The lifespan for a person newly-diagnosed today is the same as for you or I.”

Ayogo: Over the years, there have been major social and political advancements that make it more acceptable to be gay and sexually active in society.

Dr. Hightow-Weidman: Certainly we can celebrate those victories. But there’s still so much stigma around HIV. It doesn’t matter whether you are rich or poor, there is still stigma. And that stigma means that people won’t come to testing. They won’t come to the clinic. They may not stay in clinic or be adherent to their medicines. They may not fulfill all the things we know will keep them healthy and happy, because of the stigma attached to HIV.

Stigma means that people won’t come to testing.”

Ayogo: Vancouver, BC, where Ayogo is based, is known for favoring evidence-based practice and pioneering the harm-reduction approach. Can you tell us a bit about those ideas and how they’ve changed over the years?

Dr. Hightow-Weidman: We’re all individuals making choices and doing things—regardless whether it relates to smoking, drugs, food, eating, sex—and trying to get people to change their behaviors is really challenging. We ask them to stop, instead of equipping people with the information that could be helping them.

It’s not an all or none approach. People are going to have sex. Sometimes they will use condoms and sometimes they won’t. Its all about individual choice. For me there are other ways, in addition to talking about condoms that can help protect them and stay free from HIV. Like having conversations with parents. Or emphasising how to talk to sex partners about condoms or HIV status. To think about how using alcohol or drugs may influence choices they make about sex that they may not make when sober. Like thinking about using PrEP (pre-exposure prophylaxis). There are a lot of other approaches that are more palatable and more likely to be successful because they help people build their self-efficacy and continue to improve their health and safety.

It’s not an all or none approach. People are going to have sex. Sometimes they will use condoms and sometimes they won’t. Its all about individual choice. For me there are other ways, in addition to talking about condoms that can help protect them and stay free from HIV.”

Ayogo: The path you see to health, what should be happening and what is actually happening?

Dr. Hightow Weidman: The recommendation is for young men who have sex with men to get tested for HIV every three to six months. Then they would find out the results soon after and move into care pretty soon after that. What we have found is the sooner we can get them into care, the better. The idea is to connect with a physician they are comfortable with, who reinforces the importance of being in care and taking antiretrovirals, the medication to treat infection. We know that everyone who has HIV should be on medicine.

In an ideal word it’s a straight line from testing to diagnosis, to linkage, to getting into care, and getting on antiretroviral medication, to reducing your viral load to zero and staying on medications. If that happened with everyone, that is how we would stop HIV.

Unfortunately, in the real world, we find barriers at every stage in that continuum.

We find barriers in terms of testing. In the US, up to 60% of youth ages 13–24 don’t know they’re infected with HIV. Testing is a huge issue. << Share this on Twitter.

We know that linkage is suboptimal. We know that many youth who get tested and find out they are HIV+ never enter into care, not even one time.

Once entering care, they may not come back. Maybe they had a bad experience or they didn’t hear what they wanted to hear. Maybe they don’t want to think about it.

We know that among those on therapy, those that take their medicine every day keep their viral load suppressed. But we are seeing people dying of HIV even now that it’s a treatable chronic condition.

We know that Treatment as Prevention works. We know that treating HIV positive folk lowers their viral load to the point it is undetectable and that prevents infection. << Share this on Twitter.
We know this from studies in heterosexual couples, same sex couples. When the positive partner’s viral load is undetectable, the chance of transmission is zero. That’s what we know.

We know that pre-exposure prophylaxis works. Preventative oral therapies are here and injectables are coming soon. HIV negative people who take those and are exposed to HIV do not get infected. That’s probably the biggest breakthrough. We know these things work.

All of these things require for someone to know they are at risk and enter care and know these options are available to them.

It means taking a pill—currently every single day.

That’s the work I do—I figure out innovative, novel ways to address the behaviors that help people stay adherent. And I want to figure out the behaviors that youth in particular have to do to stay negative or to stay healthy, if they are positive.

When the positive partner’s viral load is undetectable, the chance of transmission is zero. That’s what we know.”

Ayogo: What have you learned from other chronic disease management that you’ve applied to HIV?

Dr. Hightow Weidman: Well, that’s the reason I came to meet you all because of the work Ayogo is doing to change behavior using technology, and games, social networking. That really aligned with the work I was doing on a smaller scale in HIV—to engage youth to try to get them to listen to what we want them to do. As researchers, we struggle to engage youth to help them to build the habits, to take their medicine, and understand the importance of that. For me, the challenge was to get people to come to an eight-session group intervention where they might run into other people they know. So I started doing technology-based work about 12 years ago with internet based interventions. At that time, it was focused on individuals interacting with the intervention on a desktop computer. This evolved into mobile interventions and social networking.

As the field evolved, I’ve tried to evolve as well. And I’ve learned a lot about what others are doing to manage other chronic disease states. Work you’ve done to engage in diabetes and obesity—to engage people. We can build off of what’s already been done. It’s why the work I’ve done with Ayogo is important—we can learn a lot from each other. And that’s where we need to go.

It’s amazing how far we’ve come—the pharmaceutical advancements. It sometimes feels magical. At the same time, simply having those treatments doesn’t end the epidemic. We have work to do to address the stigma, homophobia, transphobia. All those things that impede those living with HIV or at risk of HIV from really reaping the benefits of these advancements and living long healthy lives. We can celebrate the progress. But there’s so much work to be done. It’s been an honor to work in this field. It continues to be exciting. I want to see this epidemic to its end and that’s a real possibility.

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