Living a long life with HIV: CU research and care strive for successful aging

Thirty years ago, at age 27, Jerry Johnson noticed a rash on his upper body. He was openly gay, and so his mother, who worked at a state health agency, would bring him information about the human immunodeficiency virus – HIV. “I knew from the literature she had shared with me that this was probably HIV, and so I went to a clinic,” he says.

It took two weeks for the test results to come back. “I knew what the answer was going to be, but I was also hopeful that no, this isn’t HIV. But it was. I was completely and utterly devastated. This was pretty much a death sentence back then. So much stuff was going through my mind, and the first thing was: Who’s going to love me?”

Thirty-seven years ago, at age 33, David Lent learned he was HIV positive. “I was afraid to find out,” he says. “I was freaked out. I had friends with AIDS who were dying. My doctor, who knew as much about HIV as anyone at the time, said, ‘We don’t know what we’re doing. We’re throwing anything we can at people to see what sticks.’”

When HIV first emerged in the early 1980s, there were no treatments and no cure. The infection advanced to acquired immunodeficiency syndrome, or AIDS, ravaging the immune system and letting rare diseases run wild. Death came in months or a few years.

Between 1981 and 1987, 96% of people diagnosed with AIDS died. The epidemic’s toll grew year by year in the United States, peaking at about 50,000 deaths in 1995, when HIV was the leading cause of death for Americans ages 25-44. Worldwide, deaths from AIDS-related illness peaked at about 2.1 million in 2004, and the epidemic has claimed between 36 million and 51 million lives to date.

Besides the suffering and sorrow of the dying and their loved ones, people with HIV in those early years faced enormous fear and stigma. Many experienced shaming and derision because of the disease’s association with gay sex and intravenous drug use. Many were shunned by families, friends, and co-workers. Many found it hard to attend school, travel freely, or keep their job.

It’s been 44 years since the first official reports of what came to be called AIDS in the U.S., 42 years since the major routes of transmission were identified, and 41 years since the retrovirus that causes AIDS (later named HIV) was identified. The virus is still with us, and there still is no cure.

Almost everything else has changed. For the majority of people with the virus in the U.S., dying with HIV has turned into living a long life with HIV.

A near normal lifespan

“At this point, we expect that people diagnosed with HIV likely will have a near normal lifespan,” says Kristine Erlandson, MD, a professor in the University of Colorado Department of Medicine’s Division of Infectious Diseases who cares for people with HIV.

Says Jacob Walker, MD, an assistant professor in the CU Division of Geriatric Medicine who runs a clinic for older people with HIV: “Most people haven’t even thought of living longer with HIV. Someone this morning said, ‘Is it still a death sentence? I said, ‘No, absolutely not. Life expectancy is about the same as someone without HIV.’”

In 1987, the average age of death from HIV-related disease was 38 for men and 35 for women. Now, with effective treatments, more than half of people with HIV are age 50 and over.

Today, Johnson is 57 and Lent is 70. Both men have been living with HIV for most of their adult lives. They both have struggled at times, but both say they are feeling good today and looking forward to the years ahead. And both were enrollees in a recent study led by Erlandson into the health benefits of various levels of exercise for people with HIV.

‘It’s everything else’

For many people with HIV, living a long life requires successfully managing health challenges that can accompany the virus, some of which can occur at a younger age than for those without HIV, as well as navigating emotional stresses.

“It’s a kind of accelerated aging,” Erlandson says. “People with HIV are experiencing what the general population experiences with aging, only at an earlier age: Increased risks of cardiovascular disease, diabetes, frailty, falls and fractures, dementia, and so on.”

Helping people face those challenges is the focus of extensive research and care programs led by Erlandson, Walker, and others in the CU Department of Medicine and across the CU Anschutz Medical Campus.

“You hear this over and over again” from older people with HIV, Walker says. “It’s not the HIV; it’s everything else. They’re encountering conditions common to aging that they never thought they would have to deal with. And they’re thinking about things like planning financially for their future, having a medical power of attorney, needing caregivers, needing nursing home care. All of those are things they didn’t even consider in their 30s and 40s because they didn’t think they’d live that long.”

Better therapies

After years without effective treatments for HIV, a revolution in new treatments has led to longer, healthier lives with the virus.

“The first antiretroviral therapies were rolled out in the late ’80s, starting with AZT,” Erlandson says. “Initially, most of the antiretroviral therapies were used alone, or maybe a combination of two drugs. But they were very toxic and people developed resistance to those therapies pretty quickly.”

By the late 1990s, she says, “the concept arose of using three different medications that would target the virus in different ways. The combination got their virus suppressed for a much longer period of time.”

Later, says Erlandson, treatment evolved “from people taking handfuls of medications into taking a single tablet once day, and then, more recently, into a longer lasting, injectable therapy. A good portion of the patients in our clinic come in every eight weeks for an injection medication. And newer studies in the field are moving toward an injection that lasts six months or longer.”

Antiretroviral therapies (known as ART) don’t cure HIV. But over time, if a person diligently stays on ART as prescribed, the amount of the virus in their blood can be reduced below a level that a test can detect – known as an undetectable viral load. When that happens, a person with HIV essentially is incapable of transmitting the virus to a sex partner.

For people who don’t have HIV but who feel at risk of infection, the use of condoms has long been advised to protect against the virus and other sexually transmitted infections (STIs). And now there are also highly effective preventive medications.

In 2012, the first pre-exposure prophylaxis – known as PrEP – was approved, and today it’s available as a daily pill or an injection every other month. Taken as prescribed, PrEP reduces the risk of HIV infection by about 99% from sex and by about 74% from shared injection needles. And in emergency situations after possible exposure to HIV, such as if a condom breaks, post-exposure prophylaxis – PEP – can greatly reduce the risk of infection. While HIV PrEP and PEP do not protect against other STIs, newer guidelines include recommendations for “Doxy PEP” to provide additional STI protection.

Despite these advances, HIV has not gone away, and there still is no widely available cure, short of a type of stem cell transplant for people with cancer. An estimated 1.2 million people in the U.S. have HIV, and it's believed about 13% don’t know it because they haven’t been tested for the virus. About 38,000 people in the U.S. were diagnosed with HIV in 2022 alone.

Standing on shoulders

Jerry Johnson, originally from the Baltimore area, has worked in the airline industry for years, most recently as a Denver-based airline manager.

When he was diagnosed with HIV 30 years ago, he reluctantly told his family, but not others. “I just didn’t have the tools, the resources, to be able to understand or figure out how to move on, how to go on with life. So I kind of hid it. I didn’t own the disease. But as time went on, I started to develop a spirituality, and I changed how I viewed myself. And that led me to be able to speak out about it.”

In 1999, a few years after his diagnosis, Johnson started losing weight. He learned his viral load was very high, so he went on antiretroviral medication, which pushed his viral load down to undetectable. He has been on one kind of medication or another ever since. He now gets a shot every two months of Cabenuva, an injectable drug approved in 2021.

Johnson has been a patient of Erlandson’s for several years. “We have a really awesome relationship where we can talk and share just about anything. We have great conversations about health and life in general. I really enjoy that.”

Johnson says it “boggles my mind” why so many new cases of HIV infection occur each year with PrEP and other preventative measures available. “I’ve actually had to say to friends who aren’t on PrEP, ‘Go get on it. Do yourself a favor. And don’t take the word of someone who says they don't have HIV without any proof.’ It’s very bizarre.”

He says that when he was dating, he would indicate his HIV status as “undetectable” in his dating profile. “People put their health in another person’s hands when they don’t share information, and I refuse to do that.”

Today, at 57, Johnson is married and has a positive outlook. “My health is good, the future is bright, I go to weekly counseling sessions for my mental health, and I’m looking forward to what’s coming next. I’m so thankful because I stand on the shoulders of people before me who were on AZT and those other early medications for me to be here today, healthy and living strong. It’s hard to believe it’s been 30 years.”

He adds: “I would never want anybody to go through what I went through. But because of this thing happening to me, I have a whole different outlook on life. I had a really good friend who got diagnosed about the same time I did, became a recluse, and died a year later. But I think there’s a reason I’m still here and still healthy. I’m living life the way life should be lived, never taking any day for granted.”

‘Giving back to my forebears’

Walker is director of the Positive Aging Clinic, which opened at the UCHealth Anschutz Outpatient Pavilion in 2022. It’s one of only a few nationwide that offers geriatric and HIV care at one site.

When he started his training, Walker was interested in infectious diseases, “but during medical school I fell in love with geriatrics and all of the creative ways they try to help patients. But I didn’t want to lose that infectious-diseases interest entirely, and so during residency here at CU Anschutz I did additional HIV training to mix both worlds together. And I am also a gay man, so a bit of this is giving back to my forebears.”

His clinic’s focus is to help older people with HIV address their varied and often complex health concerns, which often include cardiovascular disease, osteoporosis, cognitive impairment, and functional decline. “For every patient, there’s usually a set of problems,” he says.

The core idea, Walker says, “is eliminating the need to go to another clinic by putting me in the HIV clinic. Because I’m both a geriatrician and an HIV specialist, I can serve as their HIV primary care doctor for everything, or I’m a consultant for folks who have a great relationship with their HIV doctor but would love to check in on aging concerns. They can do all of that in an environment where they feel safe and they already know the staff.”

‘A damn good life’

David Lent grew up in the Midwest in a large family and supported himself while attending college. He came to Denver, where he came out as gay and took part in one of the city’s earliest pride parades. “I saw my community here for the first time,” he says. “It made me feel at home.”

It’s been 37 years since Lent learned he was HIV positive, in 1987, while living in Denver. His diagnosis came at about the same time as he was launching a career in information technology, “so I had solid insurance and a good income.” But in that period, he lacked treatment options.

Lent talks of being estranged from his parents because he was gay. “I was disowned, basically, so my folks never found out about my HIV status,” he says, choking back tears. “My folks wrote me a letter condemning my life. That took a toll on me.” He did not see his father again until just before his death of cancer.

Lent didn’t go on medication until much later, “but I was taking care of myself as best I could.” He moved to Silicon Valley in California. He found a measure of comfort in HIV support groups, in gay square dancing, and in long drives up the California coast. “Exploring nature was always my protected environment,” he says.

At one point, Lent was diagnosed with AIDS because the virus had pushed down his immune T cell count, leaving him vulnerable to disease. “But I ignored that and kept on with life. Stigma was fairly big in those days – and it definitely still exists today.”

In 2001, Lent was diagnosed with cancer – large cell B cell non-Hodgkin lymphoma. After six rounds of chemotherapy, “the treatment failed,” he says, but he was eligible for a clinical study for people with HIV and cancer involving a type of autologous stem-cell therapy.

Fourteen months and two 30-day hospital stays later, Lent emerged a cancer survivor and has not had a recurrence. It took him a long time to regain his stamina, but two years later he felt strong enough to climb California’s 14,505-foot Mount Whitney with friends. By then he also was on HIV antiretroviral therapy and has stayed on it ever since. He does not believe his cancer was related to his HIV.

After living in Minnesota for 13 years, Lent retired from his IT career at age 63 and moved back to Denver. When the COVID-19 pandemic hit, “it was an emotional drain, the isolation of it. It reminded me very much of the early days of HIV – fear versus knowledge.”

There have been other challenges over the years, including two cases of sepsis, the loss of his teeth, and discovering he had a lifelong septal defect, a hole between chambers of his heart. But Lent says that, overall, “I’ve had a damn good life, even though I’ve gone through many things. I’ve been extremely fortunate. I’ve gone through emotional turmoil and self-esteem issues, but physically, I’m fine.”

Lent, now 70, has been a patient of Steven Johnson, MD, a CU infectious disease professor and director of its HIV/AIDS Clinical Program. “It’s an absolutely wonderful campus,” he says. “I’ve been so fortunate that I’ve had many doctors who would treat me as a person rather than just someone with a set of conditions.”

Medical and social challenges

In the late 2000s, when Erlandson was a fellow at CU Anschutz doing her HIV and infectious-diseases training, “I was struck by the conditions that I’d see in many of our patients with HIV who were ending up in the hospital – conditions that seemed like they were occurring at a much younger age than what I would have expected. We’d see patients in the hospital with heart attacks in their 30s or hip fractures in their 40s or 50s, or they were frail in a way I would have expected later in life.”

That helps explain why Erlandson’s research, including clinical trials, aims to help people with HIV to age successfully.

“A lot of research in more recent years has been focused towards finding a cure for HIV,” she says, “and some people living with HIV feel like there hasn’t been as much of a focus on them, and how we’re supposed to help them maintain a good quality of life.”

Some people with HIV have higher rates of other risk factors, such as smoking, which can mean a greater risk for some cancers and cardiovascular disease than HIV infection alone, Erlandson says. And for older people with HIV, early therapies decades ago may have exposed them to toxicity that has resulted in a high prevalence of neuropathy – damage to the nerves.

Besides the possibility of medical challenges, Erlandson says that people with HIV can also experience social difficulties.

“Loneliness can factor in,” she says. “Some have lost their social networks, especially as they get older. Maybe their friends have died, or their families disowned them back in the day. And they may have a difficult time finding new networks because there’s still some stigma in having HIV and being older, and oftentimes in having a different sexual identity or preferences than the general population.”

Says Walker: “We see a lot of depression, isolation, loneliness. People are either feeling the consequences of HIV stigma and don’t feel as comfortable getting out in the world, or they have lost a lot of their social network, either because of HIV earlier in the pandemic or because they’ve lost familial ties due to being LGBTQ or having HIV.”

Extensive research

Years ago, some people with HIV may not have worried much about healthy living behaviors, Erlandson says. Now, with an expectation of longer lives, the dynamic has changed. Erlandson has led extensive research into the health benefits of various levels of physical activity for older people with HIV, many of whom experience poor physical function.

In a 2018 trial, for example, Erlandson found that moderate levels of exercise improved physical function among people with HIV, and high-intensity exercise provided additional strength benefits. A 2021 study showed that various levels of exercise helped decrease systemic inflammation.

In her latest trial, Erlandson and her colleagues focused on people 50 and older with HIV who experience fatigue and live a sedentary lifestyle. She’s comparing the benefits of 16 weeks of high-intensity interval training three days a week – alternating short bursts of intense effort with periods of low-intensity activity – versus less intense levels of exercise. Following the exercise, trial participants received coaching on staying active, with Vincent Khuu, an exercise physiologist and Erlandson’s research assistant, playing a key role. Erlandson expects to have trial results soon.

Both Johnson and Lent found the high-intensity workouts challenging but rewarding. “That study helped me push my boundaries,” Lent says. Adds Johnson: “It was nice to see the progression of it and watch my body transform.”

Erlandson has secured funding for a forthcoming study that will look at the effects of a combination of resistance exercise and Tesamorelin, a drug that can reduce excess abdominal fat in people with HIV.

Walker and Erlandson have a pilot grant through the CU Department of Medicine’s Collaborative Opportunities for Advancing Research and Translational (COLLABORATE) program to measure gait speed as an additional vital sign – alongside traditional measures such as body temperature and pulse rate – to help assess which patients with HIV may need further intervention with exercise programs.

Meanwhile, work is underway to find the best models of care for older people with HIV, especially when there are shortages of primary care and infectious disease providers.

Erlandson is a consultant for the Colorado Health Network, the state’s oldest support organization for people with HIV, on a grant looking at better ways to screen, manage cases, develop care plans, and steer people to HIV resources. And Walker has secured funding from the Colorado Department of Public Health and Environment to run a dementia care training program for HIV clinic workers who can expect to see more cognitive health issues as their patients age.

A learning curve

As people live longer lives with HIV, some clinicians are still coming to grips with the implications of their patients’ HIV status when it comes to treating other conditions, including those associated with aging, both Erlandson and Walker say.

“A lot of older providers who trained at the peak of the epidemic see HIV as this terrible death sentence and feel they need to treat their patients like they are incredibly fragile,” Walker says. “They can feel out of their element doing anything for a patient with HIV, even if the problem is not HIV related. And then we see younger trainees or clinicians who don’t encounter HIV much anymore and they’re not sure how to handle it. I would love for our HIV medical education to shift more towards chronic disease management, and less towards the scary opportunistic infections that we had to deal with early in the epidemic that are rare these days.”

Says Erlandson: “There’s a learning curve, even for HIV case managers and social workers and nurses, on how to deal with some of these aging issues,” she says. “How do we train case managers to be more familiar with things like dementia care? How do we connect people to home health care agencies that are more specific to HIV? We’ve got our HIV care providers and our aging care providers, so now we need more cross training.”

As Erlandson, Walker, and their colleagues treat patients with HIV, and as they pursue their research into successful aging, they face a new reality: In contrast to the terror that gripped the world after HIV’s emergence nearly half a century ago, the virus is no longer at the forefront of the public’s consciousness.

“When people don’t hear about HIV, they start to forget what it means,” Erlandson says.

And it remains to be seen what the implications of that shift could mean for future government and philanthropic funding for HIV programs. “If there’s less and less interest in HIV, there’s a concern that some of these programs may not continue to exist,” she says. “And then we go in reverse.”

Advice to patients

In advising her patients with HIV, says Erlandson, “we talk a lot about physical activity and good nutrition. Our newer antiretroviral therapies seem to be associated with weight gain, and so we see a pairing of HIV and obesity. People with HIV tend to lose muscle mass and physical function as they get older, and doing regular aerobic exercise and resistance exercise is incredibly important.”

“Exercise really is the big one,” Walker agrees. “For folks with HIV who experience slower gait speed and decreased muscle mass at an earlier age, I pull up the graphs from some studies and show them how important exercise is going to be for them for maintaining function into their 70s.”

Walker says he also encourages socialization. “A lot of folks will get comfortable in their bubble throughout their 40s and 50s, and then not think about how much they need to rely on other people as they start to age.”

“I don’t give up’

While Lent is upbeat about his life, he talks of having mental health issues recently – he calls it a “two-plus-year funk” – and says that some facilities where he has sought mental health care won’t accept his Medicare coverage.

“But I don’t give up,” Lent says. “I don’t want to make it sound like your life is simple on HIV. But I’ve been fortunate enough to have a great life, even though I went through some hell. In the early days of HIV, we were so scared of dying right away. Now I would honestly say that, for me, there’s nothing to fear. So now, the question is, what do I do at age 70 to continue life and still explore and grow?”

 Asked what he would tell someone facing an HIV diagnosis, Johnson says: “Understand that your journey will be what you make it. Not everyone will accept it, but you have to find a place in your heart to accept it. Definitely mourn that your life has changed forever, but there is hope. Know that love is available and attainable, and always be true to yourself.”