What Aging with HIV Means in the Year 2019

Abstract

In Greek mythology, Tithonus was granted eternal life but not eternal youth. As time passes he withers, slowly losing his health and all that he knew, lamenting a cruel immortality.¹

People with HIV are now living longer, but this has come at the cost of an ever-increasing burden of comorbidities that reduce quality of life.²

Aging with HIV in 2019 means becoming physically disabled and having difficulty walking, it means feeling abandoned, socially isolated, and thus homebound; it means unable to shop for food; and increasingly it means cognitive impairment. Many face serious housing and financial hardships and have high rates of physical ailments—such as chronic pain, heart disease, diabetes, kidney disease, cancers, bone disease and fatigue—that diminish our quality of life.^3–8 All of that has been known for several years. But services to meet needs still fall short. It is time to recognize and adjust to the changing aging epidemiology in HIV, now 70% in many large cities are >40 years old; in New York City 55% are >50; in many of these cities 25% are >65.⁹ It is estimated that soon 50% will be >60, yet have we adjusted our thinking?

Although antiretroviral therapy (ART) drugs are lifesaving, for many survivors, realizing we are going to live has opened a new chapter of emotional and physical challenges. In a recent survey, >60% suffer depression and about the same have serious anxiety. Seventy percent have symptoms of post-traumatic stress; nearly half have neuropathy that is untreatable, a form of nerve pain likely caused by HIV or the early drugs to treat it. Fifty-six percent have severe fatigue. On average, survey respondents reported at least six mental or physical ailments in addition to HIV infection; a quarter regularly do not have enough money to cover their expenses of daily living. Seven percent do not have a permanent home. Nearly half sometimes do not have enough to eat; more than one in four have no one to turn to if they become sick or disabled; 15% say they have no one to count on for emotional support.⁹

Although the needs of older people with HIV are becoming more widely recognized, services for health management have not kept up. Not all of the conditions faced are obviously tied to HIV. Many suffer post-traumatic stress disorder (PTSD) from the extreme grief over the loss of so many friends and lovers to AIDS, and distanced from family the chronic burden of fear that we too may lose our life. Problems such as depression and loneliness also may be caused by the loss of so much of our community, and let us not forget the PTSD of surviving when so many of our peers have not. Complicating our care is that most older adults with HIV are used to seeing an infectious disease specialist for treatment—someone with expertise in HIV in particular. But those doctors are not geriatricians and do not necessarily know how to treat age and HIV-related heart disease or arthritis or diabetes, or the multimorbidity of all three.^10,11 As well, the health care infrastructure feels restricted and inadequate in general, which for many has become a serious a problem in particular for older aging HIV+ individuals who need more attention to enable themselves to access available care, not less.

The irony of the HIV epidemic is that those who were activists at the onset of the epidemic are now feeling too old and prematurely disease burdened to rally for the pressing necessity of HIV/AIDS research as a national priority. A further irony is that with its toll on human suffering, HIV has advanced our knowledge of medical science, from basic immunology to personalized medicine, and is now poised to advance our knowledge on the aging process itself. However, the NIH is at perilous risk of not leveraging this opportunity. People aging with HIV are burdened with greater numbers of multiple medical conditions that emerge at an earlier age and that are more commonly seen in older “normal” adults. In addition, people aging with HIV are burdened with polypharmacy, which means taking 8–15 daily medications.¹² Studies now consistently indicate that the aging process is being hijacked and, for reasons that remain unclear, altered by HIV infection. As we struggle and all too often succumb, the science, to paraphrase Henry Wadsworth Longfellow, grinds slowly and exceedingly small. We stand waiting.

We all hear about inflammation, now recognized to be a critical factor—if not the critical factor—in multiple age-associated pathologies, including those of the heart, kidney, liver, bone, muscle, and now in neurocognitive function and indeed aging itself (i.e., inflamm-aging).^13–16 What is less commonly appreciated is that the onset of the HIV epidemic drove key advances in the basic understanding of inflammation, notably in the discovery of the pivotal role for the molecule nuclear factor (NF)-κB as a major driver of inflammation and possibly even aging itself.^17,18

We also hear about personalized medicine as an approach to managed care that is systematically replacing idealized one-size-fits-all approaches. What is less appreciated is that one of the earliest examples of clinical practice adapting drug regimens to an individual with a chronic disease is HIV disease management, with antiretroviral regimens continuously shifting to counter HIV drug resistance—possibly the earliest and best example of effective personalized medicine in action. As people with HIV live longer, we are experiencing more years burdened by increasing medical conditions (i.e., multimorbidity) and pharmacological treatment complications (i.e., polypharmacy). Here, personalized medical management in the context of HIV is breaking new ground that will likely have relevance for everyone.

The graying of America is obvious, with the number of aging Americans chronically unwell growing and impinging on quality of life and straining health care resources. Unfortunately, multimorbidity and polypharmacy are all too familiar, occurring in people aging with HIV at a younger age and often with more severity. In people aging with HIV all too often 65 is the new 75 as we see from several studies that HIV accelerates features of biological aging, in some cases by 10 years or more. Indeed, perhaps the most egregious hallmarks of aging, the inexorable decline in physical and cognitive function (i.e., frailty and dementia), also have an earlier onset in the HIV infected, often in middle age.^19–24

The challenge now in 2019 is to overcome critical gaps in knowledge that we believe can be directly addressed by the NIH. The first is addressing our gap in understanding mechanisms that drive decline in physical and cognitive function with aging, both of which occur more often and prematurely in people aging with HIV. Second, biobehavioral factors that limit access to comprehensive quality care and needed support services in aging Americans, including stigma, social isolation, and reduced health literacy tools that cripple our ability to effectively engage the health care system, are all more prevalent and severely needed in people aging with HIV. Domestically the federal government spends $5–10 billion a year on Medicaid and Medicare. The Ryan White Care Program budget is $2 billion a year. For the 2019 fiscal year, the NIH budget is about $37 billion with $3 billion dedicated to HIV/AIDS research.

We need to evolve our HIV health care system with a new infrastructure that incorporates geriatric consultation into care. For a growing number of survivors, the problem of aging and HIV is now the #1 clinical issue. With this change and the aging of our population—as 50% are now >50 and soon 70% will be >50—we need to adjust our HIV care system; we need a new paradigm that addresses the needs and provides the training and services that clinicians and HIV+ people need to optimize their health span.^10,11 We have an outdated care system. Up until now CD4, viral load, and selecting an ART regimen were a major focus for many. However, now for these people living with HIV (PLWH) the needs outlined in this special issue and the services needed have evolved with the epidemic. We have an aging population often with higher CD4 counts and undetectable viral load who now are facing a devastating problem and yet our care structure is not designed to adapt to this changing clinical picture in a comprehensive way. We need to evaluate people comprehensively and a priori for mental health and physical function, disabilities, and emerging impairments to provide to care and services that they need, so we can intervene sooner in the arc of a patient's progression over time in the hope of preventing the worst of what we now see in many older frail PLWH. We need a seamless, connected, and adaptive care infrastructure that links comorbidities specialists, the PLWH, and the primary care physicians to assure PLWH get the proper care they deserve. We also need better patient education, as many PLWH today may not understand the context of their complex health condition besieged with comorbidities—in effect, all too often, they do not understand what is going on. We need a full complement of services in the clinic and community such as food security, in-home maintenance and care, virtual information technology (IT) in-home medical visitations for those homebound or mobility challenged, having difficult in their activities of daily living; and how will we provide in-home care and future housing for those requiring institutionalization. Clinicians may not be trained to identify early signs of these changes, we need to discuss all this. Finally, reimbursement in health care in general has become more difficult to navigate, and is unlikely to optimally fit the needs of our patient population or the clinics.

NIH reframed with investment in programs spanning all NIH institutes (such as through an NIH Common Fund program on HIV and Aging) would fuel the next generation of innovations across diseases of multiple organ systems and reduce health care costs, now estimated to be $600 billion per year for Americans ≥65 years. This will require close collaboration between NIH institutes, HIV researchers, and community-driven needs assessment. Doing so would optimize chances for improvements in health span and quality of life for all Americans as they age, with and without HIV infection.

Author Disclosure Statement

No competing financial interests exist.

Funding Information

This work was supported by the following grants from the National Institutes of Health: M.M. was supported by the NIA (R21 AG055415), the NIAID (R01 AI08541), the Boston Older Americans Independence Center (P30 AG031679) and the Harvard University Center for AIDS Research (P30 AI060354).