Jessica Merlin, of the University of Alabama at Birmingham, spoke to us at the HIV Endgame conference and answered our questions on chronic pain.
The HIV Endgame appears on screen. Title text reads: Jessica Merlin answers questions about chronic pain. Jessica Merlin sits in front of a wood-paneled wall and responds to questions that come from interviewers off camera. The text of the questions appears on screen in between each clip.
Jessica Merlin: My name is Jessie Merlin. I’m an assistant professor of medicine at the University of Alabama at Birmingham. And at UAB I run a chronic pain clinic that’s within an HIV patient centre medical home, or a Ryan White Clinic, and I do research on chronic pain in HIV as well.
Q: Why do people living with HIV experience chronic pain?
Merlin: So, there are a couple of hypotheses about why there’s so much burden of chronic pain in HIV, or at least it seems that way. So, one is that, you know, mental illness and addiction are more common in HIV than the general population — and we heard some good data presented about, for example, depression and HIV, earlier today. So, you know, and mental illness and addiction are more common in chronic pain and maybe it’s just, you know, the confluence of these things together.
But the other hypothesis is that maybe there’s something about the HIV virus that really makes people with HIV more predisposed to developing chronic pain. I’m gonna be presenting some data tomorrow about that. So, we’ve looked at differences in pain sensitivity between patients with and without HIV and found that patients with HIV exhibit more pain sensitivity, even those — I’m talking about people who don’t even have chronic pain. Just patients with HIV. Patients without HIV, none of them have chronic pain. Patients with HIV have more pain sensitivity. And then, when you look at patients with HIV, between — so patients who have a detectable viral load are more pain sensitive than patients who have an undetectable viral load, who are more pain sensitive than patients who don’t have HIV.
So, maybe there’s something about the HIV virus itself, and there’s some animal data about envelope protein gp120 actually causing increases in pain sensitivity, so maybe there’s something about the HIV virus itself that does this. And then, we also looked at inflammatory markers. So, we looked at a host of inflammatory markers that are associated with chronic pain and found that IL-1 beta is actually more common in patients with HIV who have chronic pain than in patients of HIV who don’t have chronic pain. So there may be some biological reasons why patients with HIV are sort of set up or predisposed to develop chronic pain.
Q: What do patients with chronic pain want from interventions?
Merlin: So, to develop this study one of the things we did is a lot of interviews — qualitative interviews — with patients who have both HIV and chronic pain, asking about what they would want in an intervention like this. And so, we found that a couple of interesting things. So, one is that there’s a strong preference for a group-based — at least partially a group-based intervention, because, you know, from what they were saying, what it really sounded like is, because chronic pain can be so socially isolating and HIV can be so socially isolating, and having both of those things together makes things even worse — that having a group where you can actually go and talk about your HIV and chronic pain and everybody else is going through the same thing is actually a really valuable experience.
And so, having that group-based component and then also having a peer-based component — so being able to see somebody who has both HIV and chronic pain who’s doing well from their chronic pain perspective, and modeling some of the behaviors like engaging in physical activity, like knowing how to manage their stress to better achieve pain management, things like that — being able to see somebody succeeding in those things is actually really important. And people even talked in these interviews about having a sponsor, like you would have in AA or NA or a mentor, you know, in that peer role.
And so the intervention that we designed actually incorporates both of those things. So, we have a peer who’s co-facilitating these group sessions with a staff interventionist. People also talked about the importance of having an “expert.” Somebody who really knows a lot about chronic pain to deliver skill-based content. And so, that’s the other role for the staff interventionist is to actually deliver some skill-based sessions as well. So, yeah.
So, I think, for me, we really were not expecting this information about groups and peers to come out as being so important. But I think it’s probably, in my estimation, going to turn out to be one of the most important things about the study and about the intervention.
Q: Is there stigma around treating patients with chronic pain?
Merlin: Oh, you know, of course HIV is a highly stigmatized disease and so is chronic pain, and so is addiction. And so, when patients have all three of those things, we have to remember how hard that must be. And I feel like, you know, this is purely anecdotal — but, in my experience, that addiction and chronic pain are two of the last things in medicine that not only do we stigmatize without knowing it, but sometimes we in healthcare settings. We really discount people with these problems and so — and when they have HIV on top of it, hopefully in HIV care settings were not stigmatizing patients with HIV to the degree that they might be stigmatized in other care settings but of course we know that that still goes on — so when patients have these three problems, you know, it can really influence how they interact with us. It can really undermine their care.
And so, one of the things I love about taking care of patients who have HIV, chronic pain, and sometimes also addiction, is that, you know, when you can help them, you’re often one of the first people who’s been able to help them. And it often really legitimizes their, you know, their how they’re feeling. And their symptoms. And it’s a really wonderful experience. So I know some providers might shy away from treating chronic pain or treating addiction, but it is the most gratifying thing I’ve ever done, because, you know, it — when you can make progress, patients do well and they’re so appreciative, and other providers are appreciative too. Like, you know, I think one of the most fun parts of my job is when I get a patient from another provider where they just really don’t know what to do, because it’s outside their skill set, and they’re just sort of at the end of their rope, and you can make some progress — that feels really good.
But anyway, I kind of started with stigma and, like, veered off in a little bit of different direction, but it’s sort of all related.
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Note on content: Interview questions have been edited for brevity.