Your cheat sheet for aging optimally with HIV

Coming up on 60 nearly two years ago, Manhattan’s Mayfield Phillips, diagnosed with HIV in 1994, told his primary care provider that he wanted to do a series of simple, in-office strength, balance and cognitive tests to have a baseline to refer against in the years to come. He particularly wanted to do them because of more than two dozen surgeries he’d had on his brain related to his hydrocephalus (“water on the brain”) going as far back as 1980 all the way to 2008, his last such procedure.

The in-office tests revealed that, in his words, “I was performing above-average for an adult male my age.” That left him feeling good. “I have this baseline to compare against now if I start to have changes in my thinking or movement that are worrisome.” He also has regular screenings for various cancers, some of which have been shown to have higher rates in people living with HIV, such as anal, cervical, lung and oral cancers. 

All these measures should be part of the standard of care for folks aging with HIV—not to mention, for the most part, most folks aging without HIV—and yet how much they are acted upon can vary based on provider knowledge of this issue. That’s why it’s so important, if your provider is not bringing up these issues once you’re past 50 or especially past 60, that you bring them up proactively. In recent decades, research has shown that HIV, largely because of the chronic inflammation it causes even when medically suppressed, can be an independent factor for accelerated aging in areas including cognition, mental health, bone health, frailty and cardiovascular health. 

But it can be hard to know the real-life potential damage HIV can cause in these areas because it’s mixed in with factors that determine everyone’s health as they age, such as quality of and access to health care, diet, exercise and social connectedness. Hence the importance of having conversations and screenings with your provider that help determine the overall health of the whole you—not just you as a person living with HIV—as you age.

According to Meredith Greene, MD, a professor of medicine at Indiana University School of Medicine who also sees hundreds of people living with HIV age 50 or over, it’s common that her patients “have multiple chronic conditions—not just HIV—and are often on multiple medications and can sometimes feel overwhelmed by their pill burden and complexity.” Heart complications, a history of strokes and diabetes are among the issues alongside HIV that she often sees in her patients.

She is echoed by Jonathan Appelbaum, MD, medical director at Carepoint Health and Wellness in Tallahassee, Florida, which serves more than 1,000 people living with HIV, most of them age 40 or older. 

“Because of all the good HIV treatment we have these days, most of my patients have aged well with the virus and their treatment for it is very simple,” he says. “So HIV itself is probably the least of their major medical issues. They’re coming in with other things,” he says, from diabetes, high blood pressure (hypertension) and elevated lipids (high cholesterol) to loneliness and social isolation.

If you’re not already having the conversations, tests and/or screenings for the issues below, and if you’re over 50 (but especially over 60), consider initiating them with your primary care provider at your next visit—or even schedule a visit just to go over them if you can. You can always print and bring this article, or refer them to these guidelines published by the National HIV and Aging Initiative, a joint project of the American Academy of HIV Medicine, ACRIA and the American Geriatrics Society. 

And keep in mind that your HIV specialist may not be a geriatric specialist as well—hence all the more need to address these issues:

Basic mental and physical function tests. Ask your provider if they—or someone they know they can refer you to—can perform some of the simple in-office cognition, balance, strength and mobility tests that Phillips mentioned. For cognition, these include the 3-minute Mini-Cog, the 5–10-minute Mini-Mental State Examination and the 10–15-minute Montreal Cognitive Assessment. Strength and/or frailty, mobility and balance can be assessed with tests like the Clinical Frailty Score, the 30-Second Sit to Stand Test and the Four-Stage Balance Test.

You should talk to your provider about cognition tests especially if “you feel you’re having a change in your memory or cognition,” says Greene. “It might be improved with a simple thing like adjusting a medication or a diagnosis of sleep apnea, which is treatable.”

Also, if you are on a lot of meds and feel overwhelmed, Greene suggests that you ask your provider for a medication review. “Go through all of them,” she says, “and ask, ‘Why am I taking this? Do I still need it? Is there an interaction with other meds?’ ”

Tests that require blood draws or diagnostic tools. These include measures to test for cardiovascular disease, bone health (DEXA or DXA scans), cancers or precancerous growths (including anal, cervical and lung, especially if you have a  history of smoking) and metabolic organ function (kidney, liver and diabetes). These could also include one-time or seasonal vaccines for illnesses including COVID, the flu, pneumonia and shingles. 

Greene notes that not all providers have the in-house resources to do all these tests, such as for anal cancer or precancer or DXA scans. If that’s the case, urge your provider to partner with a specialist elsewhere to help you get the results. 

Mental health. Your provider should ask the extent to which, and how often, you are feeling depression and/or anxiety or having symptoms that could indicate them, such as difficulty sleeping, loss of appetite or lack of interest in doing things that usually bring you pleasure and joy, such as getting together with family and friends. (Some providers even do this with a short questionnaire they ask you to take when you arrive.) 

Whether or not your provider asks you these questions, if you’ve been feeling particularly anxious or depressed, bring that up with them. Options to help alleviate depression and anxiety include better sleep practices, healthy eating, exercise and more social connectedness to talk therapy and/or medications. 

Speaking of social connectedness: Ample research has shown that isolation and loneliness as we age can lead to or exacerbate poor physical and mental health and can cut into longevity. According to Appelbaum, many providers screen patients for this with the UCLA Loneliness Scale, which asks, for example, how often you feel that you lack companionship, feel left out or feel isolated from others. But he admits, “As providers, we’ve probably not done a great job of incorporating this into our practice.” 

Indeed, your own provider may not spark this conversation—but if you’re experiencing loneliness, you should bring it up. Maybe a simple conversation with someone like your provider, or a social worker they connect you to, will help you clarify how you might get more social interaction—even if you have disabilities that limit your social life. For example, consider calling your nearest AIDS services organization. They may have groups, events or counseling opportunities for which they can arrange transportation so you can come. And if you’re completely housebound, they might even be able to send someone to you. 

Of course, as Appelbaum points out, everyone is different and some people simply need more social connection than others. You can be alone most of the time and still be happy, he says, or “you can have lots of people around you but still feel socially isolated.” He says he asks patients if they have family, friends or faith or social groups, and how often they see them, either in person or online. If someone says they see virtually no one but insists they’re fine, he calls that “a yellow flag, because it correlates with mortality.” He adds: “I’d probably engage members of my care team,” or at least revisit the issue with the patient on their next visit.

Likewise, Greene says: “I ask people how they feel about the support around them, such as if they live with anyone. I try to ask if someone enjoys being alone, and if they say yes, then I don’t try to force a lot of interaction. But I will say, ‘[Social connection] is also important for your health.’”

Lifestyle and behavior. Do you smoke or not? Eat mostly lean protein, fiber and whole foods or lots of fried, fatty fast or processed food? Drink alcohol? Exercise—even a brief daily walk? These all correlate with health and longevity, and they may offset some of the chronic inflammation caused by even well-controlled, undetectable HIV. 

Exercise, movement and diet are especially important to prevent frailty, says Appelbaum, because “once someone becomes frail, there’s not a lot you can do to reverse it.” His practice can provide nutritional counseling and connection to food banks, he says. “But you have to meet people where they are.” He says he tells patients that they don’t necessarily have to join a gym to get in cardio and strength training, but that they can simply walk (if able) and/or do at-home chair and wall exercises. 

Dr. Greene agrees. “If someone hasn’t been exercising at all, they need to start slowly,” she says. If you do join a low-cost gym like Planet Fitness or a nonprofit one like the local Y, they may well have low- or no-cost training sessions (at least one session is often offered free) where you can ask the trainer to help you design a fitness plan that’s right for older folks, newbies or both. 

Take small steps. It’s important to remember that in areas such as lifestyle and social connection, you don’t have to fix everything all at once. With diet, for example, “If a patient tells me they’re eating fried chicken three times a week,” says Appelbaum, “I’ll ask if they can cut it back to once a week, or replace French fries with a salad or vegetables.” 

It’s OK to be a little pushy. If your provider pooh-poohs any of these issues when you bring them up (“Oh, we all get lonely sometimes,” or “Well, your colonoscopy was good so we don’t have to independently screen you for anal precancer or cancer”—not!), it’s okay to push back and say, “Research shows this is important and I want you to help me with this or connect me to someone who can.” If they refuse? You might want to talk to the clinic manager (if it’s not your provider) or even look elsewhere in your area for another primary provider. 

If you’re in a rural area or another location where health care is sparse, your options for an HIV specialist may be limited, and you may have to get the best care possible from your existing provider.

Dr. Appelbaum sums it up like this: “For many folks aging with HIV, the HIV itself is not the major health issue—it’s other conditions. People need to be aware and proactive in getting the best [care and resources] they can to prolong not just their lifespan but their healthspan”—by which he means how long someone lives with health good enough to enjoy life.

That’s the path that Phillips is on. In addition to having those key conversations and tests with his provider, he says he walks eight to 10 miles a day (he’s a New Yorker, after all), does yoga three to four times a week and eats high-protein, high-fiber meals like soy chorizo, chopped kale and egg whites for breakfast.

He also says that he’s never smoked and rarely drinks alcohol. “I’m on a gay cruise right now and I’ve had one drink so far, while half the queens here are on the all-you-can-drink package,” he laughs. He’s on the cruise with someone he’s been seeing for nearly a year but says he has lots of other social outlets, such as friends going back to third grade (all of whom know he is living with HIV, he says) and SAGEPositive, the group for seniors living with HIV from the LGBTQ seniors advocacy organization SAGE.

“I feel that I’m approaching aging with HIV from a very empowered place,” he says. His advice to others? “Rather than worry,” he says, “understand what changes are potentially ahead for you, be alert for them and understand how you can get ahead of them in order to counteract them.”