Older adults with HIV (OAWH) often find it difficult to find medical care that meets the complexity of their needs. Talking to our friends in New York City and online, it seems clear that the standard of care that older people living with HIV receive in this country is extremely uneven. Many have doctors who don’t seem to do anything other than treat their HIV, monitor and treat their blood pressure and or high cholesterol, and only react to health crises when they occur. Referrals to specialists, when needed, take months and months—time in which people may become increasingly disabled or, worse, die. We’ve seen and heard of horrible things happen to too many of our friends who didn’t receive the appropriate care soon enough.
Helping one of our older friends, an AIDS activist hero, home one night from an ACT UP meeting, he told us how he had been seeing the same HIV doctor in a small practice since the 1980s. They have grown old together. But it is questionable whether this doc has really been on top of all of his complicated health issues and often there are challenges getting him the timely specialist referrals he needs. As we helped him carry his oxygen tank in the subway (he insisted on taking the subway), he told us that he had had heart attacks that had gone undetected. He said that his heart condition and other multiple comorbidities were only diagnosed when he landed in a hospital in Europe due to a heart attack. It doesn’t seem that his care has been up to the same standard since coming back to the U.S. Recently, he suffered a fourth heart attack, winding up in a different hospital here in the city (which, by the way, never seemed to have an accurate list of which medications he was supposed to be taking—but that’s another story).
Counterintuitively, we have other friends who don’t live in one of the cities with big HIV clinics or HIV ‘hero docs.’ Instead, they see non-HIV general practitioners, in some cases, even old country doctors. Their HIV regimens may not be the most up-to-date, but they seem to receive better screening and treatment for the complex health conditions typically seen at much older ages. Why is this?
‘One of the criticisms of geriatrics is that no one really knows what we do.’
“HIV clinicians who provide care for people living with HIV are not skilled in ‘multimorbidity management’—they did not ‘sign up’ to manage multimorbidities, rather they wanted to specialize in HIV,” according to Steven Karpiak, PhD, Senior Director for Research at the ACRIA Center for HIV and Aging at GMHC, which has conducted a number of surveys into the care being received by older people living with HIV. However, he added, older people with HIV “are increasingly aware of the changes in their health status as they age. They expect their providers to exhibit similar awareness.”
The truth is that many of us—even at age 50 and older—have more than one or two comorbidities. Some of us have a mix of complicated things going on at the same time, conditions such as frailty, sarcopenia (muscle wasting), polypharmacy, neurocognitive disorders, difficulty sleeping, proneness to falling—which, compounded with weaker bones can lead to injuries and disability, compromised mobility, and problems with the daily functions of life, though the mix of conditions varies from person to person. Many of the syndromes are quite similar to those seen in geriatric patients, though complicated by HIV. In fact, more than half of the HIV-positive population has two or more geriatric syndromes at once, according to a medical paper from aging specialists in France and Italy (including Professor Giovanni Guaraldi, who was mentioned in the Guest Editor’s Note). Consequently, the type of personalized care we need isn’t exactly geriatric care, but we “might benefit from models of adapted and integrated care developed over the years by geriatricians for the management of their frail and complex patients,” the European doctors wrote.
But what really is geriatric care?
“One of the criticisms of geriatrics is that no one really knows what we do,” said Dr. Alison Moore, head of the Division of Geriatrics and Gerontology at the University of California, San Diego at the most recent HIV and Aging Conference in New York City. Geriatric care, she explained, is focused on “5 M’s”: what matters most—mind, mobility, medications, and multicomplexity.
Matters most means knowing and acting upon each person’s own health outcome goals and care preferences.
Mind is identifying and managing cognitive impairment, depression and mental health, and in some cases dementia and delirium.
Mobility: geriatricians try to identify impairments in gait and balance, implement an individualized fall prevention program, and create an environment that enables mobility for each person.
Medications: As we age, we tend to accumulate prescriptions and on top of that self-medicate with over-the-counter medications. Too many, in fact, and they often interact and have cumulative unanticipated effects. For instance, many cases of delirium are the consequence of taking too many medications, including over-the-counter sleep aids, that have an anti-cholinergic effect (small but cumulative effects on brain function or chemistry). The use of multiple medications is actually considered a syndrome called polypharmacy. Geriatricians look at optimal prescribing: watching for adverse medication effects and medication burden, adjusting doses, and de-prescribing in order to reduce polypharmacy.
Multicomplexity: Identifying and managing multi-morbidity, and complex biopsychosocial situations—including stigma, psychosocial problems, changes in living situations/environment, social support, spirituality, sexuality and intimacy, employment, and food and housing security.
Essential to the geriatrician’s approach to care is something called a comprehensive geriatric assessment (CGA), which is a diagnostic process that evaluates these multiple dimensions that affect our overall health. The goal of the assessment is to develop a comprehensive plan for prevention, treatment, and rehabilitation that meets the needs of each person.
Here’s the rub though: this CGA can be somewhat complicated and time-consuming. It involves a host of standardized screening tools, some that can be performed in the standard clinic and some that cannot. For instance, the most common method for assessing frailty involves a questionnaire, a timed walk test of 15 feet to measure gait, and a grip strength test using a specialized handheld device that most doctors don’t have (though they aren’t expensive). In other words, it would require someone trained and with the proper tools and space to perform the assessment. It would be interesting to hear if anyone is routinely doing such assessments in the middle-aged and elderly people living with HIV who they treat.
“The assessment often, if you’re lucky, employs a multidisciplinary team,” Dr. Moore conceded. Nevertheless, she told the doctors in the audience that the assessments could be adapted to the available resources. “It can be done by one person if you have to, it can be done by five people if you are fortunate. It can take an hour if you need to. It can take several visits, if you are able… The particular methods one chooses to conduct the CGA can be individualized to your practice.”
Note: There are many guides on CGA tools online available for doctors. Dr. Moore made reference to Geriatrics at Your Fingertips, from the American Geriatrics Society, which is available as a book or mobile app at: geriatricscareonline.org.
After the assessment, the geriatrician shares the findings and concerns with their patient, and a shared decision-making approach is used to decide upon next steps. These may involve stopping certain medications that may be causing problems, understanding and addressing unresolved pain issues, referrals for physical and occupational therapy, and securing assistance from social workers. Whatever the individual agrees is needed. They are then given written instructions (in their own language) explaining everything, and scheduling follow-up visits to review or reassess the care plan or continue evaluation if necessary.
For many of us, this seems a far cry from the existing managed care approach that has the laudable goal of treating all people living with HIV, but in many places seems to strip care to its bare minimum. It’s HIV care on a conveyor belt. Many of our loved ones going to the large HIV treating facilities have complained of being treated like an annoyance whenever they have a complication and treated with suspicion about substance use or abuse if they ever complain about pain, lack of sleep, or muscle wasting, leaving them humiliated. This occurs in a context where “the system” seems to do everything it can to disempower patients. Demanding more and better care from a downtrodden position can be extremely difficult and becomes more difficult the more problems that develop and care that is needed.
In addition to the handful of activists working on these issues, our best advocates may be some of the researchers. In another pivotal medical paper, Dr. Eugenia Negredo of the University of Barcelona and other aging specialists make a powerful case for changing the HIV care model.
“The geriatric literature suggests that care of the older patient with multimorbidities is best managed with the assistance of a multidisciplinary team,” Negredo and colleagues wrote.
There aren’t enough geriatricians even to meet the existing needs among the elderly in this country, but the paper calls for doctors to consider being guided by these principles of geriatric medicine.
“Among HIV-infected persons aged 50 years or older, both general and HIV-specific management considerations can be taken into account and CGA programs should be considered to be incorporated in the HIV clinics in the following years,” they wrote.
“Providers should seek to understand the future health needs of [OAWH] and modify the goals of care to meet these needs,” the article concludes.
This may be a tall order for our country, which prioritizes spending health dollars on pharmaceuticals, but not in developing the pool of health care providers that are needed.
“There is no evidence that this approach will occur. Structural changes in care delivery require shifts in standards of care as well as the number of specialists being generated by the medical education system,” Karpiak writes in his position paper—though he suggests considering how nurses might be better utilized to integrate such elements into care. More of Karpiak’s recommendations about how to address the needs of older adults with HIV are in his article, “Addressing the needs of older adults living with HIV.”
About the authors
In the 30 years since joining ACT UP in 1988, Theo Smart has been an HIV medical writer all over the world, including 13 years in South Africa, where he met his husband Lance Sherriff. Now back in New York, he currently works for ICAP at Columbia University.
Lance Sherriff is a medical reporter and assistant editor with a background in HIV care and counseling in South Africa.