—but I could use a little support
By Theo Smart and Lance Sherriff

Physical and occupational therapy are indeed critical so that one can safely get physical activity back up to previous levels, though it may be a challenge to get insurance or managed care plans to pay for all the visits needed.

“When we think about aging, what we usually picture is a gradual decline in physical function—but it’s not always like that,” Dr. Todd Brown of Johns Hopkins University told the audience at a recent forum in New York held by the National AIDS Treatment Advocacy Project (NATAP). “These drops in physical function are often precipitated by health events.”

He described the story of an older adult living with HIV (OAWH) who was doing well until the age of 52—then the person had a heart attack, and a decrease in physical function—and never quite got back to the fitness level they operated at before. Then, weakened, they contracted pneumonia and were hospitalized. Before they fully recovered, they suffered a hip fracture—leading to a major effect on their quality of life and mobility. The ability to perform the routine activities of living plummeted. The person grew even weaker and frail until something even more serious happened—they had a severe stroke.

“The important thing is to get back to your previous level of function after that event,” said Dr. Brown. “When people are hospitalized, it is important that they can get physical therapy or occupational therapy so that they can bring back their level of function. It’s vital to have that as a goal of recovery.”

Physical and occupational therapy are indeed critical so that one can safely get physical activity back up to previous levels, though it may be a challenge to get insurance or managed care plans to pay for all the visits needed. Even in Canada, where access to these services is more readily available, a web-based national survey found that very few people living with HIV (PLWH) were accessing formal rehabilitation services: Only 17% had visited a physio or physical therapist in the past year, and only 6% had seen an occupational therapist. A little over one-third did report exercising regularly. However, while people should be motivated to get back into good health, the responsibility for rehabilitation should not be placed solely on the person who has had a health setback or who is in great pain. Health care services should be actively seeking out people who are falling through the cracks after a health emergency as well as retaining such clients.

Furthermore, these crises are never solely physical. According to one physiotherapist and researcher, Kelly O’Brien of the University of Toronto, Canada, speaking last year at the HIV and Aging Conference in New York City, PLWH of all ages experience episodic disabilities that “may involve physical, cognitive, mental, and emotional symptoms and impairments, difficulties carrying out day-to-day activities, challenges to social inclusion (the ability to take part in society), and uncertainty about the future—worrying when the next illness might arise and what the consequences of that illness might be,” she said. Even in the absence of any existing physical or cognitive problems, this uncertainty about the future can have a powerful effect on one’s mental and emotional health. And, said O’Brien, studies specifically looking at OAWH have shown that these uncertainties only increase as we age.

Non-physical disabilities such as the depression that many of us experience often precede the physical setbacks that Dr. Brown described and, notably, can have a major influence on whether PLWH keep physically active, which in turn, affect the likelihood of additional episodes of disability and declining functional abilities as we go on.

Additionally, the context within which the disability occurs may affect the ability to fully recover. Aspects of your social, physical, and financial environment “may exacerbate (or alleviate) the disability… and one’s ability to engage in sustained physical activity over time,” O’Brien said. Stigma, for example, has consistently been shown to have a toxic effect, while certain living strategies, such as maintaining a sense of control over life and seeking social interaction with others, improve one’s chances of recovery. Social support is critical: support in terms of accessible health care services and health care providers, program and policy support that help to maintain income and housing security, and support from friends, family, partners, pets, and the community.

“Selfcare may be difficult for those OAWH who lack the support of family and friends. The majority of OAWH are not partnered or married, with 60–70% reporting living alone,” according to Stephen Karpiak at the ACRIA Center for HIV and Aging.

People with a disability, whether physical or emotional, need social support to recover and stay active. As Karpiak and the HIV and aging activists point out, it is critical that we engage our community-based organizations to develop effective interventions to address the isolation experienced by OAWH. We must do this before we experience a disability, to make certain that those services are there for us, as well as one another, when we need them.

The benefits of exercise

Another critical task for our community organizations would be to make certain that middle-aged and OAWH have easy access to exercise interventions (such as supervised aerobic and resistance exercise) that have been shown to have rehabilitative and protective effects against disability in people living with HIV.

O’Brien presented the findings of some systematic reviews (in mostly young and middle-aged PLWH) indicating that such exercise programs led to statistically significant (and potentially clinically meaningful) improvements in heart and pulmonary fitness, and in the case of resistance exercise, improvements in body composition (decreases in body fat), muscle mass, and upper and lower extremity strength.

In addition, a few of the studies looked at quality of life measures, and saw major improvements in a number of areas including mental and emotional health and physical function. Studies have also shown that consistent exercise can offset a decline in neurocognitive health among OAWH. There are also metabolic benefits—reducing insulin resistance, triglycerides, and inflammation. Other studies show that regular physical activity improves the quality of sleep in PLWH—and one study reported a reduction in fatigue.

Even moderate exercise can have some benefits, but higher intensity exercise leads to the most significant cardiopulmonary benefits and improvements in stamina and physical function.

O’Brien and other colleagues in the field synthesized all of this research and published guidelines for rehabilitation professionals working with OAWH online (go to bmjopen.bmj.com/content/4/5/e004692.full).

But studies suggest that about half of us (and according to some studies up to 70%) are not getting the recommended 150 minutes of moderate to vigorous physical activity each week—and fewer are getting in the recommended 10,000 steps per day. Factors such as pain, depression, and physical illness are major barriers to engaging in regular exercise, so it is something of a vicious cycle.

Of note, O’Brien reported the results of a community-based exercise intervention (including a weekly coaching session with a personal trainer), which found that the major factors influencing whether people initiated and stayed engaged in the program had mostly to do with the complexities of living with an episodic illness, including mental health or complex personal and environmental factors (e.g., relationships with others, stigma, and financial insecurity). O’Brien said that after the research study concluded, only those “with the financial means” kept to personal training even though it was found to be associated with the most benefit.

This point was highlighted by Jules Levin of NATAP who was in the audience: “There’s no question that the benefits of exercise are widely known,” he said. “The problem is scaling up and implementing something like this in major cities. It is difficult to get clinicians to buy into—to get patients to buy into, because PLWH tend to be so sedentary. And then there’s reimbursement and paying for it all. These are all issues that are difficult to address. It is not on the radar of federal reimbursement, like Ryan White. This is not on anyone’s radar, except in New York where it is under discussion.”

Indeed, in New York City, gym service fees were cited as a significant barrier to initiating an exercise program by OAWH. At a recent community forum, Scott Spiegler of the New York City Department of Health reported that “over 80% of survey respondents indicated that community fitness programs were either not meeting the needs of the population, or their needs were being somewhat met but there was something definitely missing,” he said.

This survey concluded that isolation and stigma remain primary concerns for people, but there was also a need for an increased emphasis on wellness and exercise as well as a need for resources targeted to OAWH outside of the gay population. Indeed, studies suggest that women living with HIV are less likely than men to get adequate exercise, and may need programs especially designed to engage them.