To mark National HIV/AIDS and Aging Awareness Day on September 18, Arthur Fitting, LGBT Program Director at the Visiting Nurse Service of New York, is interviewing key experts on this wide-ranging topic, looking at what people with HIV, partners, caregivers, communities and the health care industry can do to help expand knowledge, reduce HIV stigma, and promote healthy aging. Today’s conversation is with Stephen E. Karpiak, PhD, Director of GMHC’s lead researcher on HIV and aging and Director of the National Resource Center on HIV & Aging.
We invite you to add your insights and experience to the conversation.
Arthur Fitting: What are the most important issues that people should know about aging with HIV?
Stephen Karpiak: Older adults living with HIV carry with them a number of other risk factors, which can include a history of substance abuse and smoking, high levels of depression, poor diet and a habit of being sedentary. Many people aging with HIV are on Medicaid and have limited resources. That’s a risk factor, too, as is being Black or Latino. All these risk factors contribute to inflammation in the body, and therefore increase their likelihood of having more comorbidities or more severe incidents of those illnesses.
AF: Can you expand on the role inflammation plays in aging, particularly aging with HIV?
SK: Inflammation (overstimulation of the body’s response system) is the common pathway through the disorders of aging. If you’ve lived 60, 70, 80 years, you’ve gone through a lot of inflammatory episodes, many of them unbeknownst to you. Smoking, depression, eating processed foods, drinking too much alcohol—all those things cause inflammation that can imperil your health.
A lot of people with HIV think, “Okay, I’ll take my pills for the rest of my life and that’s the only thing I need to change.” No, it’s not. Treating the HIV is the easy part. The anti-retrovirals tamp down the inflammatory response considerably. But, on the other hand, if you smoke, have Hep B, remain sedentary, eat poorly—that contributes to the inflammatory cascade.
So yes, you should take your pills. But you should also eat better, exercise, do not socially isolate. If you have mental health issues, don’t let them go unaddressed. These are the social determinants of health that make a huge difference in the lives of older people with HIV.
AF: How do people with HIV build on the knowledge they have of their illness to learn more about their health as they age?
SK: Their concern for so long has been the virus, but now they should begin to understand: they’re aging. None of us are prepared for aging, as far as I’m concerned. We have to be preemptory, and that’s not the kind of medicine we practice in this country, preventive medicine. We wait until a plane falls out of the sky; we do nothing preemptively.
With HIV/AIDS, the sole goal has been viral suppression. We’re obsessed with it, and I get why: for the benefit of the patient and to stop the spread. I certainly get it. But that’s not the only thing that’s important about this person—this is a whole person. We’ve totally relegated other risk factors, especially mental health, to tertiary issues. COVID has elevated that issue again. When we screen for depression, the numbers are always 3 to 5 times higher in people with HIV than in a similarly aged control group. And the average rate of PTSD is 35%. For me, that’s untenable. Suppression is treatable. But we have to expand the scope of what we treat.
AF: How should people navigate their health care as they get older? Should they seek to involve a geriatrician in their treatment along with their primary care provider?
SK: It’s generally conceded that the only physicians who know how to manage multiple morbidities are geriatricians or people who understand geriatrics. Certain HIV units are literally retooling care standards within the HIV clinics to include the methodologies of geriatrics. The geriatrician is aware of function, that your quality of life depends on how functional you are, how independent you are in your own home. Chronological age is a poor measure of aging. One of the challenges of geriatrics is how do you meaningfully measure age.
There aren’t enough geriatricians in this country. The model now is if you think you have an issue related to aging—frailty, pre-dementia, limitation of ADLs (activities of daily living)—your primary care physician refers you to a geriatrician, who does a workup and sends recommendations back to your PCP. And that’s if you can find a geriatrician.
AF: What is the age breakdown of the U.S. HIV population today?
SK: In New York City, out of 127,000 people with HIV, 60% of them are age 50 or over. Nationwide, out of 1.2 million, 63% are 50+, and 15% are 65+. HIV patients might not be considered old but may have all the symptoms of being old.
AF: How do you find health care access is for people aging with HIV, and for the older LBGTQ+ population in general? The Visiting Nurse Service of New York, where I work, has provided SAGE training to every employee for LGBT cultural issues, sensitivities and best practices around sexual orientation and gender identity. But SAGE reports about 20 of LGBT people avoid medical care for fear of discrimination.
SK: There’s still a lot of bias in the health care system. Your PCP may see HIV-positive patients all the time, but as you get older, you may be referred to a rheumatologist, cardiologist, nephrologist, or another specialist who doesn’t see HIV people all the time. They and their staff are not ready for that person, and the stigma of HIV is alive and well today. They may say or ask something injurious to the patient, who then gets turned off and never goes back to the doctor. I know home visitors at VNSNY are trained to avoid those pitfalls, but not everyone is.
AF: The old adage is you can’t stop aging. But you’re saying that’s not true. We can slow down the aging process if we pay attention to our health and get the care we need.
SK: Absolutely. You can modify the aging arc. It’s always better to do it sooner rather than later. If you’re 75, you’re not going to behave like you’re 30—your body doesn't have those kind of reserves—but there are all kinds of things you can do to practice good preventive medicine. Eat right, exercise, stop smoking, avoid stress and attend to your mental health.
AF: Thank you Steve for this interview and all you are doing for our community, and thanks too for supporting the work we are doing at VNSNY in the areas of LGBTQ+ home health care.