While listening to Celeste Watkins-Hayes, PhD, read from her new book at a ViiV Healthcare community summit, it was so interesting to me that Kimberly Smith, MD, was now Head of Research and Development for the company. I had heard Dr. Smith tell similar stories when she was an HIV specialist at Rush University Medical Center in Chicago. Although corporations are under pressure to do things that make them look good—like giving money—ViiV has gone beyond funding medical presentations. Dr. Smith is perfectly poised to do something Dr. Watkins-Hayes advocates: speak truth to power.
I spent 20 years taking care of patients in Chicago and got to experience through them many ways of navigating challenges. One of the really interesting things that Celeste captured in [her book] Remaking A Life was the experience of women and how they were always challenged by everything else going on in their lives. I can’t tell you how many times I had patients who weren’t able to focus on their own care because they were so busy focusing on some trauma that was happening in the life of their child or their husband, or someone else. So, I’m very happy that she’s out there telling the stories.
I always talked to my patients about the fact that they could not manage to care for anybody else if they weren’t there. You have to focus on your own care. So, I find ways to have them see that as the highest priority. A lot of them did. Lots of folks got it together, took all their meds, and dealt with all that drama too. But then it was a challenge for others.
I remember there was one patient in particular who stands out to me because when I met her, she was extremely ill. I met her and her daughter, who was around 18 at the time. Her daughter literally brought her back to life. When you treat MAC—mycobacterium avium complex, that in itself often requires three different medications. Then you had three or four different medicines for HIV. Her daughter made a routine for her.
She lined up all her pills. Made sure she took every one of her meds. She just completely got it together and got back to being independent. And she was so proud of what her daughter had done. They were so close, for an extended period of time. It was really something to be a part of that relationship between the two of them.
Then her daughter, after all that, she could go on with her life. And she did. She and her partner had a child, she went on to college. She did all of that. Then my patient stopped taking her meds. She just went back to, “I don’t want to deal with this. I don’t want to take medicine anymore.” Ultimately, she ended up dying. The daughter felt … almost mad at her mom. “We went through all of this. Got everything back. We got you back to independence.”
There are so many stories, so many families and relationships. That’s one thing as a provider that I felt: being a part of their lives in a way that was profound. There’s nothing like it as far as being able to affect people’s lives in a positive way—hopefully.
Enid Vázquez: It’s interesting that this story tells what you saw, that medicine is only going to take you so far.
Kimberly Smith, MD: That’s right.
The question we asked through the webinar was, if you could magically create something, what does everybody need? One of my responses was safe spaces. That people can be safe in whatever way they came to be. Some of it is physically safe, from violence, from danger and risk, and protected from this sort of angst and all of that.
It’s also spaces where you can actually be you. Some of that is for transwomen—transwomen and transmen—to be able to be who you are. And that I think it’s so important for people, living with HIV or not, to be able to have a place where they feel like they can be themselves and not be judged, and not be discriminated against.
You mentioned in the webinar dealing with stigma so that HIV could be just a part of someone’s life and not dominate it.
In general, that’s the philosophy. What can we do? Pharmaceutical companies can do a lot of things to make better medicines, and we are doing that. But we’re also trying to find ways to address stigma. And find ways to have people feel comfortable—or to feel more comfortable—in their skin.
One of the things that we’ve been doing is anti-stigma campaigns. One of the new campaigns is called Being Seen, and is focused on Black MSM [men who have sex with men]. Our Positive Action group is doing that. It’s basically interviewing different Black MSM from all parts of society, including actors, directors, and artists. They’re telling stories about how they are impacted by the visual of Black MSM in different settings. Someone, for example, told the story in one of the first podcasts about how the first time he got ahold of an E. Lynn Harris book was the first time he actually saw the feelings that he had represented on paper.
The way I describe it, particularly for the women that I took care of, is that the stereotypes about women living with HIV, that they had to be drug users or that they were quote-unquote promiscuous—I would remind people that the overwhelming majority of my patients got HIV from their husbands or their long-term boyfriends.
You don’t know what a person’s story is. The notion that you ascribe something negative to people is just always so problematic to me. It got to the point that when I had fellows or students presenting cases to me and they would describe somebody with HIV and talk about how they got it—that was the least relevant part. What matters is, how are they taking care of themselves now? How are we going to take care of them? How are we going to help them through whatever they’re going through at that moment?
Better medicine is really important. Simpler medicine is really important. But it’s not just that. People need to have the other parts of their lives coming together well, too, in order to allow them to be able to consistently stick to their medicines, and not be traumatized by their medicines, actually. We heard from people in clinical trials for long-acting therapy that one of the biggest benefits was not having to take a pill every day, which was a daily reminder of living with HIV. When you think about it, something happened to them that was likely traumatic. They received their HIV diagnosis. There’s so much self-stigma that people blame themselves. So, taking a pill every day is a reminder. How do you get past that?
Long-acting therapy, that’s one way. But people have to be able to get past that trauma to live out their lives. And then they won’t see taking medicine as a negative thing.
So why is a pharmaceutical company doing something to sponsor these types of podcasts? Because we recognize that there’s so much more to living with HIV and helping people thrive than making medicine. It’s about having people be able to live their lives in a positive way, to be themselves. Address that stigma, and it empowers people to be able to take on what they need to take on to control this disease.
View some of the community outreach at viivhealthcare.com/en-us.