Nelson Vergel has served as an expert for TheBody.com for many years. Recently, he answered a question from a fellow long-term survivor who is turning 60 and seeking advice about what to discuss with his provider. Here's what Vergel said:
By turning 60, you have achieved something that most people living with HIV never thought possible. I am sure you have developed many skills to remain healthy and optimistic as you age with a disease that has killed millions.
I am right behind you (57 years old and 33-plus years of infection), so I have been actively researching the HIV and aging topic by necessity and as a way to remain in control of my health. I believe that it is our job to remind our busy health care providers about new guidelines for people like us.
Over a quarter of people living with HIV in the United States are now over 50 years of age. Like all aging humans, there are things we need to monitor. Unfortunately, it has been shown that some aging-related conditions occur more frequently in people with HIV, so we need to remain empowered and resilient as we challenge this pesky virus at its own game.
Some bodily functions are monitored almost automatically when we visit our HIV physicians:
- Lipid, kidney and liver function. These tests are included in three cheap blood test panels considered part of the HIV standard of care (complete blood count, comprehensive metabolic panel and lipid panel).
- Blood pressure, temperature and weight.
- CD4 cells and viral load. Some clinics are checking them no more frequently than twice per year in patients who have been on stable, successful antiretroviral regimens).
Other important tests can fall through the cracks:
- Electrocardiograms are an important cardiovascular test that should be imperative for HIV-infected patients -- but even in socialized medicine settings such as the UK it can fall through the cracks.
- Hormone blood level tests, especially total and free testosterone, thyroid stimulating hormone (TSH) and free T3. Blood levels of testosterone and thyroid hormones (TSH, free T3 and free T4) are not tested unless patients complain about symptoms including fatigue, low sex drive, low mood, fat gain and cold intolerance.
- DEXA bone density scans every few years. This is one of the more neglected tests since many clinics wait until you have a fracture. A DEXA scan is usually done at a hospital or radiology clinic with a referral and order from your doctor. HIV in itself, low testosterone and thyroid levels and tenofovir disoproxil fumarate (Viread), an HIV medication, can decrease bone density.
- Anoscopies to detect anal warts and/or dysplasia. Anal cancer is more common among long-term HIV survivors, and very few doctors are trained to detect it with high-resolution anoscopies before it progresses to a concerning state. Even a basic digital rectal exam (not only for prostate) can be lifesaving in some resource-limited settings since it can detect unusual growths in the anal canal. I highly recommend watching my video interview on the subject, which mentions the ANCHOR study that many people can join.
- Waist-to-hip ratio measurements. This is a seldom-done measurement that is important for determining whether we can qualify for treatment of HIV lipodystrophy-related deep belly fat, which can increase cardiovascular risk and decrease quality of life. Increased waist-to-hip ratio is correlated with increased visceral (deep) fat that can cause metabolic and quality of life problems. Here is an interview with one of the world's top experts on the subject.
- Assessment of any inflammatory-related conditions. HIV is an inflammatory disease that may increase the incidence of certain conditions as we age. This remains speculation since no studies are yet looking into this issue. Nevertheless, it is important to keep a watchful eye out for early onset arthritis, inflammatory bowel disease (IBD), skin and sinus issues, body aches and other inflammatory-related problems. I have been diagnosed with IBD and mild arthritis, so I am hyper aware of this issue.
Although activists are frustrated by the lack of practical research on aging with HIV, there are over ten studies actively recruiting older HIV-positive people.
TheBody.com's Aging With HIV Resource Center is the best and most comprehensive resource page for aging with HIV.
Moreover, Let's Kick Ass, a national movement of long-term survivors, needs help and volunteers as they create chapters in different cities.
Last, but not least, I will shamelessly plug my own resources:
This is a very expansive subject, so trying to compile all resources runs the risk of excluding some great non-profits and programs; I apologize if I forgot anyone!
I hope to see you on one or several of our HIV and aging online orbits. Stay healthy and positive (no pun intended). Many of us are transcending expectations as we navigate the wiser but often humbling seas of aging with a chronic condition.