Aging With HIV: What We Know and What You Can Do
In the early years of the epidemic, there were few who thought that we would ever focus on HIV and aging. In fact, many providers are still not facing the massive change in the age of people with HIV and the challenges that come with it.
Although we are seeing new HIV infections in people over 50, the main reason for the rising number of older adults with HIV is better HIV medications. In 1985, a 20-year-old with AIDS might expect to live only to age 22. Today, that 20-year-old can look forward to an almost normal lifespan. This year, half of those living with HIV in the U.S. will be over 50. By 2020, that number may rise to 70%.
But HIV is not the only health issue these older adults face. Research shows that people with HIV have an increased risk of many illnesses associated with aging. These conditions, including heart disease, cancers, kidney disease, osteoporosis, and others, are occurring more often and sometimes earlier than expected. Also, mental health conditions like depression are common among those with HIV.
Does HIV Make People Age Faster?
Research to answer this question has skyrocketed, but a scientific consensus has not yet been reached. The reality is complicated. But HIV, together with other risk factors, does seem to be driving an increased frequency and earlier onset of age-related illnesses. What do we know, and what can be done to prevent or reduce the frequency and severity of these illnesses, known as "comorbidities"? How can older adults with HIV manage them?
Aging Is Not a Disease
Everyone, regardless of HIV status, ages. There are complex changes in our body that occur as we age. But aging itself is not a disease. We know that the arc of aging can be very different for each person, due to genetic and environmental factors. The focus of much research is how HIV interacts with the complex changes that occur as we age. And that is only beginning to be understood.
One possible explanation for the high number of comorbidities people with HIV face is that HIV not only attacks the immune system, but also activates it. Known as inflammation, this leads the body to release large amounts of substances into the blood that can cause more harm than good. For example, chemicals called cytokines fight infection, but when present in large amounts due to inflammation they can lead to poor health outcomes.
Inflammation is reduced, but not eliminated, by HIV treatment. Chronic inflammation may play a part in many illnesses, including heart disease and osteoporosis (bone thinning). HIV aside, inflammation is magnified by smoking, alcohol, poor diet, excess stress, etc. And inflammation is cumulative, so people infected with HIV in their 20s will have a longer exposure to HIV-related inflammation than those infected in their 40s. For people who delayed HIV treatment, or who do not adhere to HIV treatment, HIV-related inflammation will be greater. This is one of the reasons HIV treatment is now recommended for all people as soon as they are diagnosed with HIV.
Many older adults also have other risk factors that increase the possibility of developing the illnesses associated with aging. Genetics are beyond our control -- does longevity run in your family? But we are responsible for other risks, including smoking, poor diet, lack of exercise, high stress, and substance use. Some risk factors can be managed by medications, and others by personal actions. Here are some conditions older adults with HIV face, and suggestions for dealing with them.
There is no doubt that older adults with HIV have a greater lifetime risk of heart disease. This risk may come from HIV-induced chronic inflammation or other factors like smoking, poor diet, and lack of exercise. Reports based on thousands of HIV patients show that older adults with HIV are at a greater lifetime risk for heart attacks and other cardiovascular conditions than younger patients.
What you can do:
- Discuss with your health care provider how to manage risk factors for heart disease such as high blood pressure and diabetes.
- Stop smoking -- this is a priority.
- Avoid recreational drugs -- if you do use them, be sure to discuss this with your health care provider.
- Keep your weight within the normal range for your age.
- Exercise -- this is key. Walk, run, ride a bike, lift weights, play a sport. Talk to your doctor and choose the one that is best for you, but choose one!
Certain cancers (Kaposi's sarcoma and non-Hodgkin's lymphoma) have historically been linked to an AIDS diagnosis. But today, non-AIDS cancers such as anal cancer, liver cancer, and Hodgkin's lymphoma occur more often in those with HIV than in those who don't have the virus. Lung cancer is also more common in HIV-positive adults, but this may be due to the fact that at least half of all older adults with HIV smoke -- a rate three to four times higher than that of the general population. However, no increased risk for breast and prostate cancer has been seen in people with HIV.
What you can do:
- Discuss screening tests recommended for older adults, such as mammography and colonoscopy, with your care provider.
- Discuss screening tests that are specific for people with HIV with your provider -- anal pap smears or other anal cancer screens are important for everyone with HIV, and women need cervical pap smears.
- If you do have cancer, learn as much as you can -- many cancers are treatable, but require close coordination of care with a cancer specialist.
Many studies show that older adults with HIV have a significantly higher number of bone fractures, due to increased rates of osteoporosis (bone thinning) and its milder form, osteopenia. Osteoporosis often occurs after menopause in women and later in life in men. In people with HIV, it may be caused by HIV or by certain HIV medications, as well as by traditional risk factors such as alcohol use and treatment with steroids. People with osteoporosis have a high risk of fractures when they fall.
Studies suggest that HIV-positive adults aged 50 experience falls at a similar rate as HIV-negative adults over 65, so falls are an important health concern for people with HIV. But falls are rarely caused by one specific thing. Rather, they are often caused by more than one risk factor, including certain medical conditions, medication side effects, or the person's physical environment. Peripheral neuropathy (nerve damage in the feet and legs), another common condition in people with HIV, can also greatly increase the risk of falls.
What you can do:
- Talk to your medical provider about DEXA scans, especially if you're a postmenopausal women or a man over 50 (some groups recommended screening for all older adults with HIV).
- Ask your provider if you should take vitamin D or calcium to support bone health -- if you have osteoporosis you may need other medications, such as bisphosphonates.
The best treatment for falls is prevention:
- Look for loose rugs, electrical wires, or other obstacles where you live. Be very careful in the bathroom, where falls are most common because of slippery floors and tubs. When walking outside, scan ahead for uneven sidewalks that might cause a fall.
- Try exercises that improve balance, like yoga and tai chi.
- Work with your health care provider to manage conditions like neuropathy.
- Get regular vision checkups.
- Talk to your care provider about meds that can affect your balance, such as blood pressure, depression, or anxiety meds.
- If you have a fall, even without any fractures, it's important to tell your health care provider in order to evaluate the possible reasons for the fall and to try to prevent future falls.
No Health Without Mental Health
In ACRIA's Research on Older Adults With HIV (ROAH) study of almost 1,000 older adults with HIV in New York City, the most often reported illness in addition to HIV was depression. Many studies show that people with HIV have three to five times higher rates of depression than the general population, which is a prime predictor of medication nonadherence. In people with HIV, depression is also linked to high rates of social isolation and the negative effects of AIDS stigma. In one ACRIA study, over 80% of participants said socialization was what they needed most.
What you can do:
- If you are feeling down or blue and are not enjoying life, discuss that with your health care provider, who can do a screening for clinical depression.
- Remember that a diagnosis of depression does not automatically mean you need to be taking medication -- counseling alone is often effective. Recent reports show that short-term "talk" therapy (especially cognitive behavioral therapy) can be as effective as antidepressants.
- If you feel isolated or lonely, look for a support group -- more of these are focusing on the needs of older adults with HIV.
- Help someone else in need -- tutor, mentor, volunteer. Focusing on the needs of others can be empowering and uplifting.
- Do not hesitate to ask for help! Depression can be treated. Do not accept the depression -- seek and demand effective treatment.
Kidney disease, leading to a reduction in kidney function, is more common in older adults with HIV than in those who are negative. This can be caused by HIV itself or by other medical conditions, or it can be a side effect of HIV meds and other meds. Monitor your kidney function on a regular basis, especially if you take Viread (contained in many HIV combo pills). Liver function should also be regularly checked, and you should be screened for hepatitis C and vaccinated for hep A and B. New drugs are available that can cure hep C -- if you can get them.
There is less scientific consensus on whether certain conditions like high blood pressure, diabetes, cognitive problems, frailty, and vision and hearing loss are more common in people with HIV. More studies are needed to clarify the relationships between HIV and these conditions. But they should be addressed by the health care team and patient. For example, in 2015 two large studies showed that older adults with HIV were at increased risk for macular degeneration (a leading cause of vision loss) and hearing loss.
These are just some of the conditions that can affect people with HIV, and many people face more than one. Having two or more chronic illnesses in addition to HIV is called "multimorbidity".
Less Can Be More
Managing multiple conditions often requires more medications. Taking more than five meds is known as "polypharmacy". Many people with HIV, when asked how many pills they take, simply answer "a lot".
Compared with two decades ago, the number of pills a person takes for HIV has been significantly reduced. But that decrease has been accompanied by the need for more pills to treat other illnesses, and pills to manage the side effects of those meds. Many also take over-the-counter drugs like vitamins, herbs, and pain relievers. Polypharmacy can lead to unwanted drug interactions and still more side effects. And, as the number of pills increases, it's harder to remember to take them, lowering adherence. The increase in side effects from polypharmacy can lead to problems such as organ damage, falls and fractures, cognitive decline, hospitalizations, and even death.
Managing multiple medications:
- Keep a list of all your medications (including over-the-counter meds like Tylenol, antacids, vitamins, and herbs).
- Show that list to all health care providers -- especially your primary care provider and pharmacist.
- Discuss possible side effects and the number of pills you're taking -- ask whether a drug is being used only to treat the side effects of another drug.
- Be honest with your provider if you're having a hard time taking all of your pills.
- Identify one provider who can help you review any new treatments added by specialists or consulting doctors.
HIV specialists have always kept a watchful eye on viral loads and CD4 counts, but with the aging of the HIV population, their focus must now shift.
Geriatric care providers have received additional training in the needs of older adults. They have expertise in dealing with multimorbidity and polypharmacy, since these are more common as people age. Geriatric care emphasizes overall function, such as how well someone can manage tasks like shopping and paying bills, as well as basic tasks like getting dressed and bathing. They include these functional abilities when deciding to add another medication or to screen for other illnesses.
But functional status is just one part of a typical geriatric assessment. Providers also ask about falls, cognitive abilities, mental health, and what social supports are available. New research suggests that falls, functional impairment, and frailty may occur at slightly earlier ages in adults with HIV and suggests that patients and providers should discuss such concerns.
Integrating geriatric principles into the care of older adults with HIV is critical. Managing multimorbidity and polypharmacy, preventing falls, and assessing caregiver support are just a few examples of how geriatric care principles can used in the care of people with HIV. Integrating social and mental health services is essential. This may be challenging, since some age-related conditions may occur in people with HIV before the traditional "geriatric" cutoff point of 65. We should look at a person's functional status and the presence of geriatric conditions, rather than just their age, to determine what services are needed.
We do not expect geriatricians to manage all of the care of older adults with HIV. But we do need them to provide guidance to HIV providers who treat older adults. Continuing medical education will be needed, as well as involving nurses trained in geriatric care. Geriatricians know that as treatments are added for each illness, the risk associated with polypharmacy, drug interactions, and drug toxicities increases. And all health care must be integrated. Today, that is largely done by the client -- it needs to be a team effort.
Who Will Care for You?
Older people with HIV often face another challenge. Those who have been caregivers know the importance of having familiar people around who provide all levels of support. Research by ACRIA and others has shown that over 70% of older adults with HIV live alone. This doesn't always lead to poor social support, but much research has shown that many older people with HIV have fragile social networks. As they age, they may become isolated from families and friends for many reasons, including health issues, HIV-related stigma, and ageism.
Many people, especially long-term survivors of HIV, may be isolated due to the loss of partners and friends in the early days of the AIDS epidemic. Others may be estranged from family and friends because of their sexual orientation or drug use history. Without social supports (known as informal caregiving), they will need more formal support (in this time of reduced health resources).
Treatment strategies for an older adult with HIV must consider their often poor support networks. The buddy system, including phone support, was used in the first decade of the epidemic as a way to address this gap -- perhaps it's time to bring it back.
Older adults with HIV may face many challenges, but there are many successes and reasons to celebrate. In fact, there are many long-term survivors who have shown great resilience. And there are many things people with HIV can do to optimize their health as they age. The fear of experiencing multiple diseases and conditions may increase anxiety, but there is enormous clinical experience on how best to manage the health of older adults. People with HIV and their providers must be proactive and address potential problems before they become serious. The website www.hiv-age.org can be helpful in dealing with the management of comorbidities.
Everyone with HIV deserves the highest quality of life, and that's attainable with the knowledge we now have. It will be even more so as new knowledge is gained.
Stephen Karpiak, Ph.D., is the senior director for research and evaluation at ACRIA and on faculty at NYU College of Nursing. Meredith Greene, M.D., is an assistant professor of medicine within the Division of Geriatrics, UCSF. Richard Havlik, M.D., is a medical epidemiologist, formerly with the NIH.