There was an earlier time when my name and the topic of HIV were proposed to a group of medical providers organizing a "senior" health symposium. I and my topic were promptly rejected by the program planners because, they asserted, "Old people don't need to hear about AIDS."
Wrong. They do need to hear that HIV can infect and affect older individuals. We all need to understand that between 10 and 15 percent of AIDS cases in the United States are in persons over 50 years of age.
HIV/AIDS is often not acknowledged in the aging community because of the common perception that older adults are no longer sexually active and, therefore, are not at risk for infection. This results in a lack of prevention programs targeted at older individuals and in the failure of health care and service providers to discuss matters of sexuality -- or drug use, for that matter -- with aging patients and clients.
For example, I recently asked a thirty-something gynecologist if she routinely took sexual histories of older women. "Oh, no, I wouldn't be comfortable in doing that," she answered. I suggested it is important that she overcome her reluctance.
HIV-infected elders are frequently invisible, isolated and ignored, due to the dual stigma of living with a sexually-transmitted disease and of being "old," a condition that in our U.S. culture is often not valued or respected. The dual stigma makes it especially difficult for seniors to disclose to family and friends, thereby forfeiting support that might be forthcoming.
I'm still seeking acknowledgment of HIV/AIDS in the aging community. I've been doing this work for five years. I don't do it because I adopted this cause out of the goodness of my heart. I do this work because I hope I can make a difference. It's because of a letter I opened on a Sunday in January in 1991. A health insurance company to which I had applied for new medical coverage announced that I had been rejected because of a "significant blood abnormality."
Distraught to discover that I apparently was suffering from a serious blood disorder, I slept little that night; the next morning, I telephoned the insurance underwriter. "What is this 'significant blood abnormality,'" I inquired. Her reply: "I'm sorry but that's confidential. Your doctor will have to tell you."
A few hours later, I was in the office of my family practitioner, who looked troubled as she referred to a fax and reported, "Jane, this insurance company claims your blood tested positive for HIV." Stunned, I had a second test two days later. After waiting two weeks -- the longest two weeks of my life -- I learned, sadly, that I do have the virus that causes AIDS.
My family and the few friends I told were as shocked as my doctor because I didn't fit an AIDS stereotype. At the time of my diagnosis nine years ago, I was a successful 55-year-old career woman. Before that I had lived a conventional, traditional lifestyle: I'd been a virgin on my wedding night in early 1959 and I remained monogamous during 23 years of marriage. But then, in the early 1980s, I was divorced, and for the first time in a quarter century I was dating again. I didn't consider myself promiscuous. I didn't frequent the singles bars. I went out with men my age who, like me, had been married and were divorced. And in those days I knew little about AIDS, only that a mysterious, fatal ailment was affecting the gay community.
It didn't occur to me that I would put myself at risk by engaging in unprotected sex with an attractive, intelligent, amusing man of many interests, a man who had been a close friend my entire adult life. But that's what happened to me at the end of 1985 at the age of 50. Infection with HIV.
Following my diagnosis, I withdrew. I did not have the courage to put myself in situations that might be painful -- where I might experience discrimination, rejection, or prejudice. I lived in partial isolation, spending time mostly with family and the friends who knew my condition, who were supportive, compassionate and non-judgmental.
Four years passed. I took my prescribed antiviral drugs and I was blessed: I stayed well. But I remained shamed and humiliated, still hiding the fact of my HIV status. Encouraged by my son and my friends, I decided to put another face to the epidemic -- an old, wrinkled face -- to demonstrate that HIV does not discriminate, that "it's not who you are or how old you are, but what you do and don't do in regard to transmission of HIV." It was not easy. I had to become semi-comfortable with looking out into an audience and admitting: "I live with a stigmatizing sexually transmitted disease."
In the years since my diagnosis, I've gone from professional journalist -- an interviewer -- into media interviewee, from private person to public activist. In the autumn of 1995 a group of us, gathered at the first National HIV/AIDS and Aging Conference in New York, founded the National Association on HIV Over Fifty (NAHOF). The aging community needs to be educated on transmission, prevention and available services. The education of the professionals, the health care and social service providers who minister to seniors, is also crucial. First, they must be taught to recognize that the disease can and does exist in the elder population; then the providers should begin to initiate discussions about sexuality and sexually transmitted diseases, explain prevention, even encourage HIV testing.
During my annual physical examination in 1989, I asked my family practitioner if I should take an HIV test. I had begun to hear that the disease was moving into the heterosexual population and, after all, I had enjoyed some intimacies after my divorce. This was the physician who would, two years later, pass on the insurance company test results, but at that earlier time she said simply, "Oh, no, Jane, not you. You don't need that test."
I would like to think that in the intervening 11 years things have changed. But physicians, for the most part, omit the topic of sexuality when dealing with seniors. When I have asked my peers if their clinicians take sexual histories during consultations, they say no.
If physicians would take a more proactive role in discussing sexuality and sexual histories with their patients, there might be fewer misdiagnoses of older people who are, in fact, HIV infected. Misdiagnoses occur because HIV symptoms can be similar to those associated with aging -- weakened immune system, weight loss, fatigue, swollen lymph nodes, skin rashes, respiratory problems, depression, decreased cognitive or physical abilities. Too often older people are not diagnosed until an AIDS-defining opportunistic infection has already developed, and as a result the elderly often die sooner from AIDS complications than younger people do. There even have been cases in which HIV was not confirmed until after the patient had died.
I am reminded of a story passed on by a colleague about a 65-year-old man living in the Chicago area who encountered a "you've lived long enough" attitude from the physician who delivered the man's HIV+ diagnosis. Discouraged, the man next went to an AIDS service organization for assistance. When he inquired about a doctor, he was told he'd have to select his own clinician from a list the ASO would give him. According to the man, the ASO counselor could see he was depressed, suggested he "cheer up," asked his age, and when told, said, "What do you want? You die of something after sixty." Later, this man found a physician he was seeing to be more caring and warmer to his younger patients. "I saw a difference in the treatment I was getting," he said.
How discouraging for him and all of us "over 50" who live with HIV disease, who are conscious of a cultural attitude that assumes, "Elderly people have lived their lives -- so what if they die from AIDS?" Admittedly, I'm one of the fortunate ones, in that my current physician is attuned to aging with the virus. Sometimes a symptom that may be evidence of HIV progression is in fact just a sign of aging. Recently, a head cold evolved into a sinus infection, and when I requested an explanation as to why I am having more sinus infections, my doctor answered that the HIV-infected are more subject to such problems and, "so are old people." Zap! Unknowingly, she had reminded me of my years, and I cringed.
Try as one might to age with good humor and grace, it's not always easy to accept the limitations of decreased physical and mental capabilities -- the loss of muscle strength, the lack of energy, the loss of physical attractiveness and, most discouraging, the forgetfulness. Couple these frustrations with the variety of feelings experienced by any HIV positive individual, and it is simple to conclude that seniors, especially those with self-image issues, may endure more emotional and physical stresses than do others living with the disease.
A beneficial solution could be support groups, often a mainstay of younger adults, but they are not a tradition with seniors, who, we are told, tend to be shy and uncomfortable in such settings. Concerns of older HIV-infected persons are not the same as those of younger people, and it becomes difficult to relate. Yet there are support groups for women and men that have achieved success.
I am nearly 65 years old, well past the childbearing years and I look as I did 36 years ago before the birth of my son. I appear robustly pregnant. This is one of the side effects of the antiviral drugs which can be more distressing to aging individuals. We oldsters who live with HIV have legitimate concerns about the fact that we have not been included in research and clinical drug trials. There are no published studies about the effects of antiviral drug therapy on older people, nor do we have information about possible interactions between antivirals and drugs that are routinely prescribed for a variety of older ailments. Personally, I wonder about my combination of two therapies: triple antiviral and hormone replacement.
Please join me in my passionate campaign to educate, and perhaps we can make a difference in all arenas of HIV/AIDS awareness.
For more information, NAHOF, c/o MATEC/UIC, 808 S. Wood, m/c 779, Chicago, IL 60612-7203; or call (312) 996-1426.