“No one asked me when I was in my 20s what I wanted to be or what kind of life I wanted to have when I was in my 60s, because I wasn’t expected to live,” says HIV advocate Vince Crisostomo.
Crisostomo, who is now in his 60s, found out that he had HIV in 1989, two years after he was infected. “People associate a lot of loss with HIV and AIDS, particularly my generation,” he says. “I was lucky.”
In the 1980s and early 1990s, many people with HIV only lived 1-2 years after their diagnosis. But with new treatment and a better understanding of the virus, many people, like Crisostomo, are living long and healthy lives. Today, almost half of all people living with HIV in the United States are older than 50.
Medication for HIV has evolved greatly since the FDA first approved the use of antiretroviral therapies (ART) for this virus. Treatment used to include many pills, problematic dosing, food and drug interactions, and other harsh symptoms.
“Early on, we were switching medications because of side effects,” says Janessa Broussard, vice president of medical affairs for the San Francisco AIDS Foundation. “But we’ve reached a point where we have agents that don’t have issues that would concern me to change my patient to another option. The decisions that we make nowadays have to do with an individual’s preference.”
HIV treatment may still have side effects, but modern ART is much more manageable. Successful treatment routines have allowed for the life expectancy of people with HIV to be comparable to that of people without the virus.
“Before we had adequate therapy, HIV was, as people say, a death sentence,” Broussard says. That’s changed. ” It’s a completely different conversation that I have with my patients, which is wonderful. I can honestly say that this really will not affect your lifespan. You can still live a long, happy, healthy life.”
Since people are living longer lives with HIV, age-related health issues have become a new challenge. While HIV treatments lower the chances for AIDS-defining illnesses, certain non-AIDS conditions are more common in people aging with HIV. Some of these include:
- Lung disease
- Cardiovascular disease (heart disease)
- Some cancers, like lymphoma
- HIV-associated neurocognitive disorders (HAND)
- Kidney and liver disease
- Mild cognitive impairment
- Type 2 diabetes
People with HIV may also notice these conditions earlier in the aging process than their peers without HIV. Researchers don’t know exactly why this happens but believe it has to do with changes in the immune system causing age-related complications to start earlier.
Aging and HIV are also both linked to chronic inflammation, which could lead to many health conditions.
In addition, long-term ART could cause complications like osteoporosis, a higher risk of fractures, renal and metabolic disorders, liver disease, cardiovascular disease, and central nervous system disorders. But experts find it difficult to tell if ART directly causes these conditions, or if they’re due to a combination of long-term ART and other factors.
A person’s genetics, lifestyle, length of time from infection to starting ART, and other medical obstacles could also impact their risk of these age-associated problems.
“With age, many people develop chronic conditions that require medications that also have side effects,” Broussard says. “It’s hard to say directly, that long-term antiretrovirals cause a certain condition. They may have contributed to the development of certain conditions. But if you’re looking at a risk/benefit perspective, antiretrovirals — even with the effects — are significantly better than the effect that HIV has on the body when it’s not controlled by therapy.”
It’s important to start ART as soon as possible, even if you’re diagnosed later in life. In addition, there are many things you can do to live a healthy and long life with HIV:
Find a doctor who fits your needs. Your medical provider should understand the needs of someone aging with HIV. Your physical, mental, and emotional requirements may be different from those of other people. It’s important that your doctor realizes these potential differences and is trained to provide the care you deserve.
See your doctor regularly. Ask your doctor how often you should have a routine health checkup. They should test your urine and blood to see if anything has changed or if you have an undetected viral load, which means the virus isn’t having as much of an impact on your body. As with any other condition, it’s a good idea to keep track of your health and let your doctor know if you notice any changes.
Make healthy lifestyle choices. You can lower your risk of getting age-related illnesses by not smoking, limiting alcohol use, and avoiding recreational drugs.
Eat well and exercise. Keeping a healthy weight can also help you avoid health complications. Eat balanced meals and exercise often to maintain fitness. Lifting weights can also help your bones stay strong, which helps fight against the side effects of osteoporosis.
Seek social support. Support groups and communities can help you chat about your experiences and connect with others aging with HIV. You can find groups that meet online or in person. In addition, talking to your loved ones can help you express your feelings and allow them to understand your perspective.
Maintaining mental health. Your mental health needs change as you age. It’s important that you focus on your mental well-being, in addition to your physical health. Older people with HIV are at a higher risk for mental health issues and social isolation than HIV-negative people of the same age. This is because of stigmas, loss of friends and loved ones, and the normal side effects of HIV, ART, and the aging process.
These days, Crisostomo is working on his mindset. “I’ve never planned a trip in my adult life a year ahead. I’ve never had goals, except to just kind of get through the day or the month. I’m trying to shift that,” he says.
Like him, more people are aging with HIV and exploring a life chapter they thought would never come. “People are able to have relationships, be loved, have children that are biologically related to them,” Broussard says. “It’s a stark contrast to the lives that people living with HIV lived in the ’80s and the ’90s.”