POSITIVELY AWARE JANUARY/FEBRUARY 2011
We never thought we’d live this long
When I got my positive HIV test result in 1987, there was no such thing as “HIV and Aging.” In San Francisco, people who tested positive had less than a year to live.1 My doctor told me I should “find my place in the universe” and be sure my will was up to date.
The 1996 International AIDS Conference in Vancouver provided a surge of hope in the grim scheme of AIDS. Combination therapy including the new protease inhibitor drugs seemed to hold the promise of a cure. People with HIV faced a major adjustment. Maybe it wasn’t such a good idea to max out the credit cards (after all, we wouldn’t be around to pay the bills) and work our way down our “bucket list,” whatever the cost. Maybe we would be around long enough to have a serious relationship, to go to graduate school—to have a life! The life expectancy of people living with HIV increased dramatically after 1996.2
As the death rates from AIDS declined, other diseases emerged for people with AIDS: liver, kidney, and cardiovascular disease; non-AIDS cancers, and diabetes.3 The list of things to do to stay healthy with HIV got a lot longer. Taking antiretrovirals is as important as ever, but traditional factors such as smoking, diabetes, and exercise take on new importance.4
Our hopes for a cure faded as HIV proved to be able to persist in the face of the best medications we had. In the last decade, our concerns shifted to health issues we also didn’t expect, such as osteoporosis, hypertension, heart disease, memory loss, and frailty. These are the diseases associated with old age, which we never expected to reach.
The older population with AIDS is increasing
Age 50 is the cutoff used by the U.S. Centers for Disease Control and Prevention (CDC) to keep statistics on “older people” with HIV and AIDS. The most recent CDC statistics for AIDS by age are from 2005. They show that people age 50 years and older accounted for 19% of all AIDS diagnoses, 29% of persons living with AIDS, and 35% of all deaths of persons with AIDS.5
The number of older people diagnosed with AIDS is increasing. There are several types of seniors being added:
- People with HIV are aging due to the success of combination antiretroviral medications, which has lengthened the life span of people infected with HIV. This is the major factor contributing to the increase in seniors in New York City.6
- Some older people are just learning that they have been infected with HIV, perhaps for several years.7 Age is related to late diagnosis of HIV.8
- Older people may become newly infected with HIV. In New York City, women over 50 years old accounted for 22% of new HIV infections in 2008.7
Several factors contribute to the increase in older people getting infected with HIV:
- Health care providers may not test older people for HIV infection. This may be because they don’t perceive their patients as being sexually active or at risk for HIV infection.
- Older people may lack awareness of the risk factors for getting HIV. Very little HIV prevention education is targeted at older people. Many older people believe that HIV only affects younger people, and most older people get no training in safer sexual activities.
- Many older people are newly single. They get divorced or lose their mates. While they had a partner, they may have ignored HIV prevention messages; when going back into social settings, they may believe that they are not at risk for HIV infection.
- Drug use accounts for more than 16% of infections of people over 50. Again, health care providers may not perceive that their patients are engaging in this type of risk behavior.
- Older patients may be engaging in unprotected sexual activity. This may be heterosexual or homosexual sex. The use of Viagra and other drugs that help men get and maintain an erection contribute to increased rates of sexual activity and sexually transmitted diseases among older people, as they do for younger people.
- Physicians may not accurately diagnose HIV infection in older people. Some early symptoms of HIV disease are easily confused with other diseases of normal aging.
- The stigma of having HIV/AIDS may be worse for older people. This can result in hiding their infection from family and friends, as well as from their health care providers.
HIV in older people
The first studies of HIV in older people were done before strong anti-HIV drugs were available. Most of them showed that older people got sicker and died faster than younger people. This was thought to be due to the weaker immune systems of older people. More recent research shows that older people respond well to antiretroviral treatment. Most older patients, unless they are drug users or have mental problems, take their medications more regularly than younger patients: they have better adherence.9
The number of people over 50 with HIV or AIDS is growing rapidly.
Life expectancy after a diagnosis of HIV doubled from 1996 to 2005.
HIV disease status is typically measured by CD4 cell levels and HIV viral load. The CD4 counts are supposed to indicate the strength of the immune system; the viral load measures the strength of the virus. Virologic response in older people is comparable to younger.10 However, CD4 counts do not improve as quickly or as much in older patients as in younger. This is at least partly due to the gradual decline in the function of the thymus, where T-cells are produced, as we age. Unfortunately, we don’t have good information on older people because they were usually not included in clinical trials of new drugs.
Treatment side effects may not be any more frequent in older people. However, careful research has not been done. Some health changes caused by aging can resemble antiretroviral medication side effects. Other health issues in older people might intensify medication side effects. For example, older age is a major risk factor for heart disease and for increasing fat in the abdomen. Some older people without HIV lose fat in the face or arms in a way that looks similar to the changes caused by lipodystrophy.
Multiple chronic conditions
As people age, they develop health issues that continue for the rest of their lives. These chronic conditions can include heart disease, diabetes, depression, osteoporosis, high blood pressure, kidney problems, arthritis, Alzheimer’s disease, and various forms of cancer. As people age, they can become frail. The frailty syndrome is defined as the presence of at least three of the following characteristics: exhaustion, slowed walking speed, low activity level, weakness, and weight loss.11
Older people often take many different medications to deal with their health problems. This makes it more difficult for a doctor to choose anti-HIV drugs because of interactions with other medications. In addition, this “polypharmacy” complicates adherence, especially for people with memory problems or depression.
Many of the health problems of older people appear at younger ages and at higher rates in people with HIV. This has been documented with loss of bone mineral density,12 cardiovascular disease,13 and diabetes.14 However, there is disagreement among researchers about whether HIV causes accelerated aging, or whether the normal diseases of aging interact with each other and HIV and intensify each other. An intriguing possibility was suggested at the recent 1st International Workshop on HIV & Aging. Mitochondrial damage was proposed as an overall cause for virtually all of the ailments of older age. The mitochondria are the body’s “power plant,” the source of all energy used by the cells. Mitochondrial damage has been explored in connection with the fat loss of lipodystrophy. It will be interesting to see whether this hypothesis proves true or not.
Older people may have more problems with thinking and remembering than younger people, known as age-related dementia. These symptoms can appear to be the same as HIV-related neurocognitive dysfunction. These problems are less severe than they were before the use of strong anti-HIV drugs. It is difficult to know what is causing mental problems in older people with HIV. Is it normal aging, or is it HIV disease? Research studies have linked both age and higher viral load to mental problems. A large study of central nervous system problems in people with HIV found neurocognitive impairment in 40% of the patients studied.15
Rates of depression and substance use have not been well studied in older people. However, depression is the second most common psychiatric disorder in HIV populations, after substance abuse.16 These problems may be related to HIV disease, aging, or both. They need to be diagnosed and treated correctly.
LEARNING TO LET GO
There’s one way in which we older people with HIV may be ahead of other seniors. That is in regard to letting go. When we learned of our HIV status, at least if it was more than 15 years ago, we pretty much had to let go of our future. There was no really effective treatment for HIV. Coming out as HIV-positive was always a difficult experience. We experienced some degree of stigma and discrimination. For every friend who would hang in there with us, several couldn’t handle the news. Relationships broke off, sometimes without any explanation. We had to build a network of support, if we could. As HIV progressed, we learned to let go of more. Lipodystrophy, AIDS wasting, or Kaposi’s sarcoma robbed many of their physical appearance. We learned to live with fatigue that took away our ability to ski, or run, or even to walk. Mental capabilities declined, and we figured out a way to compensate. With aging, we face the same issues. But this time we’re at least somewhat prepared.
A gift with strings attached
The number of people over 50 with HIV or AIDS is growing rapidly. Life expectancy after a diagnosis of HIV doubled from 1996 to 2005.17 Personally, I have lived over 23 years with HIV, something that certainly did not seem possible when I tested positive. I am grateful for these extra years of life. But they come at a price: twice-daily antiviral medications, with the threat that missing doses could lead to the development of drug resistance. I am dealing with several conditions, including osteoporosis, HIV-related myelopathy (degeneration of the coating of nerve fibers in the spinal cord, though I still haven’t gotten a good explanation of what that is!), high blood pressure, low thyroid—each of which comes with its own medications and limitations. I walk with a cane, but I’m still here, along with thousands of my colleagues. Many of us have been dealing with HIV and AIDS for over 20 years. We see each other at conferences and appreciate the fact that we are alive to meet once again. I’m 59 years old, and looking forward to more!
Robert Munk, PhD, has been involved in AIDS activism since 1987, the year he tested positive. He has been a frequent writer and speaker on HIV treatment topics, providing current HIV/AIDS treatment information in non-technical language. Dr. Munk was a founding member of the AIDS Treatment Activists Coalition and currently serves as President of its Board of Directors.
This column is supported by funding from Merck.