How the myth about opioids and chronic pain affects people living with HIV

Chronic pain is something many people living with HIV report, with studies estimating that the condition affects anywhere from 40% to 85% of people living with HIV. Many people are treated with long-term opioid therapy, and some studies estimate that as many as 17% of people living with HIV are treating their pain for long periods of time with medications such as Vicodin, OxyContin and the like.

Our country is in the midst of an opioid epidemic, with skyrocketing rates of overdose deaths, dependence and other forms of substance misuse caused by powerful opioid painkillers. With “unclear benefits” of long-term opioid therapy for the treatment of pain, public health experts have questioned whether long-term opioid therapy causes more harm than good.

What are the benefits of long-term opioid use for people living with HIV, and what are the harms? To shed light on these issues, Jessica Merlin, MD, PhD, joins BETA from the University of Pittsburgh School of Medicine. Dr. Merlin is an infectious disease physician, an addiction specialist, and she runs a chronic pain clinic for people living with HIV.

BETA: Thanks for joining us Dr. Merlin. Could you first tell us about why people living with HIV have higher rates of chronic pain?

Jessica Merlin, MD, PhD
Jessica Merlin, MD, PhD

Jessica Merlin, MD, PhD: Chronic pain is really common in people living with HIV, but we really don’t know why people living with HIV seem to have so much chronic pain. One hypothesis is that chronic pain may be caused by inflammation, in the same way that cardiovascular disease may be caused by inflammation. It could be that the virus itself increases pain sensitivity—we have done some work suggesting that this might be the case. Or it could be that people living with HIV who experience chronic pain have other things happening in their life—mental illness or substance use—that may cause chronic pain.

Overall, I think the issue is underappreciated by the medical community. People living with HIV have been talking about chronic pain for a long time and only recently has the medical community really started to understand the importance of this health problem for people living with HIV.

You recently did a study with people living with HIV taking long-term opioid therapy. Can you tell us a little more about what you were researching?

Dr. Merlin: All of my research questions come from the clinic—I run a chronic pain clinic for people living with HIV. A lot of people in HIV primary care have relatively debilitating chronic pain, and a lot of people take long-term opioid therapy. There are studies that suggest that people living with HIV are more likely to be prescribed long-term opioid therapy.

As you know, in the last few years we’ve learned a lot about the risks of long-term opioid therapy, and the lack of benefit.

I was interested in understanding chronic pain itself, as a comorbidity in people living with HIV. What’s the impact? Not only on function, but also on HIV outcomes. How does it impact virologic suppression and retention in care? These are things that are really important to find out as we look at keeping individuals living with HIV healthy.

Why did you hypothesize that long-term opioid therapy might influence retention in HIV care?

Dr. Merlin: There have been rumblings, for many years, that some HIV providers are prescribing long-term opioid therapy in situations where they otherwise might not—as an incentive to keep their patients retained in care. They might think that the patient—because they are getting long-term opioid therapy from them—is more likely to keep coming back. Or, we’ve heard that providers may say, “If you keep your virus suppressed (which means being adherent to medications) and if you come to the clinic, I’ll give you opioids.”

As a chronic pain specialist, and an addiction specialist, this really worries me.

If someone is doing great on their opioids, fine. But if someone has concerning behaviors, we’re not treating their addiction and their pain properly. The idea that opioid misuse is the “lesser of two evils” is really concerning.

What did your study find in terms of long-term opioid therapy and retention in care?

Dr. Merlin: The study we did was with a national clinic-based cohort of people living with HIV. A total of 2,334 people were included in the study—people without chronic pain, people with chronic pain who were on long-term opioid therapy, and people with chronic pain who were not on long-term opioid therapy.

We found that there was no difference in retention in care between the two groups of people with chronic pain—those who were on long-term opioid therapy and those that were not. If providers are keeping people on long-term opioid therapy just to keep them coming back to the clinic, not even raising the question of whether this is a medically indicated or safe thing to do, it’s not actually having the intended effect.

What more can you tell us about pain management with long-term opioid therapy, especially for people living with HIV?

Dr. Merlin: The evidence is pretty strong that opioids are not very effective in treating chronic pain. I don’t equate opioids with successful pain management.

This can be confusing for people, because for many years people have been told that opioids work for chronic pain. But this was based on little to no evidence. There’s an entire backstory about how this myth about opioids got propagated, and a lot of it was about how OxyContin was marketed. The bottom line is that it became the mission of many people to get opioids out there, and now we’re dealing with the aftermath.

Not only do opioids not work well, but they can cause a lot of problems. There’s risk of addiction, overdose, sexual dysfunction and long-term side effects like depression.

What kinds of therapies or treatments do you recommend for people living with HIV who experience chronic pain?

Dr. Merlin: The answer is really complicated, and individualized for each patient.

If a person is already taking opioids, we assess the risk and benefits of opioids for that person. Are they at risk for depression? Are they having trouble sleeping? Are they taking benzodiazepines too? It’s particularly dangerous to take benzodiazepines and opioids. We also assess the functional benefit people are getting from their opioids. If they’re still lying in bed all day, despite being on opioids, it doesn’t seem like they’re getting much functional benefit.

Some of the research I am doing now is to test a behavioral pain management intervention on a large scale. The intervention involves things like group sessions and one-on-one sessions. There is a peer-led session led by someone who is doing well in managing their chronic pain. We’ll be teaching people—what are the things you can do in your daily lives to put your pain in the background, and be able to do the things that make you, you?

One thing we definitely want to get the word out about is that chronic pain needs to be on the map as we’re thinking about the health of people living with HIV. It’s really common, it’s impairing, and it’s associated with much worse HIV outcomes.


Merlin, J. S. and colleagues. Brief Report: The Association of Chronic Pain and Long-Term Opioid Therapy With HIV Treatment Outcomes. JAIDS, September, 2017.


San Francisco Health Network provides a list of resources for people living with chronic pain, a list of low-cost integrative medicine for chronic pain. Zuckerberg San Francisco General Hospital offers consultations and pain management services.

About the author

Emily Land, MA

Emily Land, MA is a writer and the Vice President of Public Affairs at San Francisco AIDS Foundation.