HIV Over 50
by Jane P. Fowler,
Co-chair, National Association on HIV Over Fifty
Editor’s Note: The
following story is taken from a talk given at the National
AIDS Update Conference in San Francisco in March, held by
the American Foundation for AIDS Research (amfAR).
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
1980’s, 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.
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