‘The devil you know’: Many people over 50 are taking outdated ART, despite side effects

Three years ago, while speaking to a friend about his antiretroviral treatment (ART), I was alarmed to learn that he was still using efavirenz/emtricitabine/tenofovir (Atripla), even though he’d been living with HIV for over 10 years and there are better options available in the U.S. This friend was in his 60s at the time. He assured me that his doctor had decided that because he was doing well with efavirenz/emtricitabine/tenofovir—aside from occasional nightmares and becoming too sleepy to function—there was no reason to change.

What bothered me about this was my belief that long-term use of a heavy soporific is dangerous, especially after seeing this friend struggle to remain alert during an emergency after taking his pill. Eventually, I convinced him to speak to his doctor with a prepared script about why the change was necessary. Though the physician agreed to make this change, I believe he should have advised my friend to make the shift without my interference.

David Malebranche, M.D., M.P.H., an internal medicine, sexual health, and HIV physician who is also living with the virus, agrees. A significant proportion of people living with HIV (PLWH) are still using older HIV treatments. A recent study published in Clinical Infectious Diseases on current real-world usage of ART regimens in the U.S. found that 6% of the study population (median age, 51 years) was on a protease inhibitor–based regimen, and 8% were on an NNRTI-based regimen.

Malebranche has had numerous conversations with older PLWH―both in his personal life and in private practice with patients―about shifting to newer medications.

Discuss New Medications With Compassion and Nuanced Conversations

Malebranche says that many of these conversations have occurred because people were struggling with viral resistance or heavy side effects―including digestive issues, severe fatigue, or dizziness―though he says that even without specific struggles, staying up to date with advances in HIV treatment is in everyone’s best interest.

When speaking to friends, Malebranche often recommends that they ask their doctor or provider about a specific drug. He also provides them with online resources so that they can learn more on their own.

In his professional capacity, Malebranche says that informing older patients about newer medications and checking in on how they are processing their current regimen is “part of the game,” though he cautions that in medical settings, these conversations require greater nuance than what occurs during conversations with friends. Some older patients develop attachments to their ART, says Malebranche, and these attachments are usually associated with the fact that these drugs saved his patients’ lives―something he thinks many professionals fail to respect.

With that in mind, Malebranche says that conversations about changing medication require medical professionals to put themselves in their patients’ shoes. Especially if, like him, they have “patients who have literally, not hyperbolically, been at death’s door.” In such instances, he recognizes the “investment and emotional attachment” that comes from starting HIV treatment and making a total recovery. In those instances, some patients see their existing ART regimen as sacrosanct. “I don’t think anyone can understand it unless they go through something similar,” he says.

Instead of looking for rational sense in an emotional decision, Malebranche shares that he is more interested in learning about a patient’s experience with an antiretroviral medication to inform how he approaches suggesting a change. The conversation can begin as simply as asking a patient, “Tell me the story about this medication. Why does it mean so much to you? Why are you OK with putting up with mild side effects?”

Over the course of his career, Malebranche has found that loyalty to medications with side effects comes down to a “decisional balance.” That balance can be weighing the burden of side effect–induced nightmares, heavy sleep, or occasional diarrhea versus having an undetectable viral load and a T-cell count that was once 10 but is now 800―as well as the familiarity after years of adherence and a fear of change. In common parlance, it is “the devil you know.”

Knowing how important ART is for maintaining PLWH’s health, Malebranche says that when speaking about changing medications, he gives patients and friends “context about the bigger picture of HIV treatment.” This includes the history of ART evolution. He notes that when he first started treating patients, the standard options included zidovudine (AZT, Retrovir), saquinavir (Invirase), and nelfinavir (Viracept), which he bluntly describes as “medications you’ll hear shit about today, that were taken two to three times [per day] and had horrific side effects.”

The shift for many PLWH came in 2006 with the advent of efavirenz/emtricitabine/tenofovir, the first one-pill-a-day treatment regimen for HIV that was approved by the U.S. Food and Drug Administration (FDA). Five years later, approvals began to roll in for single-pill regimens with progressively greater efficacy and less overall toxicity, including emtricitabine/rilpivirine/tenofovir (Complera) in 2011, cobicistat/elvitegravir/emtricitabine/tenofovir (Stribild) in 2012, abacavir/dolutegravir/lamivudine (Triumeq) in 2014, and bictegravir/emtricitabine/tenofovir alafenamide (Biktarvy) in 2018. Bictegravir/emtricitabine/tenofovir alafenamide and dolutegravir-based regimens currently comprise all of the first-line options recommended in the U.S. Department of Health and Human Services ART guidelines.

Malebranche says that this may feel like a lot to tell patients, but because “science evolves, we also have to evolve with the time and medications we’re on.” And having that information helps patients to make informed decisions. In his experience, patients who were reticent, but who made the shift anyway, are always surprised to discover how much easier it is to live without setting a timer or having to take a pill later in the day to avoid experiencing side effects during their work hours.

Help Patients Embrace a New Normal With the Assurance of Good Care

Tolerating side effects can be exhausting, but Malebranche says that it is part of the mental calculation that PLWH have long been forced to endure, with the understanding that any inconvenience is accepted as part of the cost of maintaining viral suppression. Creating a new normal, he says, by working with older patients to switch their medications has been revolutionary—not only because it helps them to avoid unnecessary pain, but because it leads to a higher quality of life, deepens the patient-doctor bond, and makes treatment easier.

Helping patients shift to different medications does not always happen overnight, at any age. In 2018, my doctor suggested that I switch from abacavir/dolutegravir/lamivudine to bictegravir/emtricitabine/tenofovir alafenamide to help reduce elevated creatinine levels in my liver. Though I trusted her, I was resistant to changing my ART regimen at that time because I was still recovering from a concussion. Despite my concerns about undergoing any unnecessary changes, I made the shift a month later, after asking a few questions and learning how important she thought it was in the long run. Though I did not notice any changes, she showed me that my blood work indicated a decline in creatinine levels and that my health was even more robust than it had been before.

Not all patients are as easy to coax as I was. Malebranche says that while speaking with a former patient―who was taking eight pills a day as a consequence of having previously developed viral resistance during the ’90s―he noted that the patient’s current combination of pills included taking an integrase inhibitor and a protease inhibitor separately, when a simpler, single-tablet option was available. The patient continued to reject this possibility until Malebranche asked him about how his treatment was affecting his life. That turned out to be the key to success.

“For some reason, he bonded with my asking about his life,” Malebranche says. “So when I brought up changing medication afterwards, he considered it and eventually made the change. He has remained undetectable since then.”

For many PLWH, maintaining viral suppression is the most important aspect of their treatment, and the prospect of disrupting their health can cause paralyzing fear. Malebranche says that easing through that fear requires speaking to patients about their options as well as explaining why a change is being advised—and developing a deeper relationship that includes reassuring them that their health will be closely monitored to ensure that it remains excellent.

In the past, when speaking with patients who are in their 50s and 60s who have been on older antiretrovirals—such tenofovir disoproxil fumarate (TDF, Viread), which can increase long-term risk for renal impairment—Malebranche says that discussing results from their blood work has helped to break through fears of their HIV viral load becoming detectable, because “the numbers don’t lie.” He notes that anytime a patient changes medication, it is essential to follow up soon afterward rather than throwing them to the wolves. This assures them that they are still undetectable and is in accordance with guidelines for the standard of care.

“That’s what you’re supposed to do,” Malebranche says, “Because if somebody is going to break [i.e., their viral load spikes], it’s going to happen during a change. If that happens within the first month, you want to identify it right away instead of scrambling to take a phenotype or genotype to see what’s going on [in terms of emergent drug resistance].”

HIV science is constantly advancing. Likewise, Malebranche says that doctors have a responsibility to be on top of helping their patients switch to the latest advances, or to at least bring them up. However, he advises professionals “not to shove it down patients’ throats forcefully. There’s an art to it, and we have to be respectful of their choices.” And if a patient decides that making a change is not the best for them, as long as they remain undetectable, everything should be all right.

Change does not always occur overnight, nor can it be forced upon patients. But doctors can convince their patients to consider different options by investing in building their relationship, establishing trust, and empowering PLWH with knowledge. Doing so transforms patients into willing partners.

By Juan Michael Porter II
Juan Michael Porter II is a contributing editor for TheBody and TheBodyPro. He has been living with HIV since 2015.