Bay Windows - Local News June 28, 2001
Laura Kiritsy, Bay Windows Staff

Fowler, who was in her 50s at the time, just assumed her doctor knew best. Aside from that, she never really believed she was at risk for HIV either. When her husband of 23 years ended their marriage in 1983, Fowler, who was a virgin on her wedding night and remained monogamous thereafter, didn't begin dating until nearly two years after the breakup. "I didn't know what was out there," recalls the retired journalist. "I had no need for a condom to prevent pregnancy, so I didn't think anything about engaging in unprotected sex. I wasn't a swinger; I wasn't out in singles bars. I went out with a few men I had known and I had a few intimacies. And these men were my age and like me they had been married and were divorced." It never occurred to her that one of those men -- a man she had known since her high school days -- could infect her with HIV. "Because in those days -- the mid-1980s -- we knew little about HIV. We knew there was this mysterious ailment affecting gay men and so what did heterosexuals have to worry about?"

But in 1991, her application to a new HMO was rejected after a routine blood test revealed a "significant blood abnormality," which turned out to be HIV.

Fowler, who will be 66 on July 4, is a prime example of perhaps the most overlooked -- and growing -- population at risk for HIV/AIDS: men and women over age 50. According to the Centers for Disease Control, about 10 percent of people diagnosed with AIDS in the U.S. -- roughly 75,000 Americans -- are aged 50 or older. That figure is likely just the tip of the iceberg, as the CDC doesn't keep national statistics on HIV infections. According to the National Association on HIV Over Fifty (NAHOF), an organization dedicated to promoting education, prevention, service and health care for older people affected by HIV/AIDS, in the last decade the number of infections rose more than twice as fast as infections among younger adults.

As one of the co-founders of NAHOF, Fowler attended the organization's Fourth National Conference at the Newton Marriott June 22-23. The event brought together some 250 older people with HIV/AIDS, physicians, social workers, caregivers and service providers to address the unique issues affecting the senior population with regard to the epidemic. The issues facing the older adult population are many -- the conference featured more than 25 panels on topics as diverse as managing symptoms in older people to treating infected military veterans. The latter presentation detailed a University of Pittsburgh study that concludes that aging HIV-infected veterans may represent a large part of the future of the AIDS epidemic as "they are living longer, are afflicted with multiple chronic conditions, often engage in conflicting health behaviors, are ethnically diverse and are faced with many challenges with regard to disease management."

But if one dominant theme emerged at the NAHOF conference it's that HIV/AIDS in the aging population should be detected earlier -- thereby offering better treatment opportunities. And, more importantly, it could be prevented completely if older people and their physicians started talking more openly about sex and the risk factors involved in contracting the virus. The reality is that older people are having sex, yet few acknowledge it and far too many of them are not receiving appropriate treatment or prevention information.

"I think the very sad thing is doctors, like all the rest of society -- and I was just as guilty as anybody -- we tend not to think of our parents as sexual beings and we think of elderly as being asexual beings," says Bill Rydwels, a 68-year-old gay man. Rydwels was diagnosed with HIV at age 53 in 1985 after watching his partner of 17 years die of the virus within three months of being diagnosed. "They know how to watch television, they know how to eat and they know how to sleep and that's all we give them credit for. And they do so much more and it gets obviated. And doctors -- I can't understand how they have not focused on sexuality when the pharmaceutical industry produced a drug called Viagra and it's certainly not for young people," he points out. "So if they're producing drugs to make men more sexually active, they should also be giving them the message of how to protect themselves while being sexually active."

Rydwels, who was diagnosed with AIDS in 1996, yet remains healthy, started an HIV support group in his native Chicago for older adults with HIV in an effort to educate his peers about the risk of HIV/AIDS. Fortunately, he notes, elders with HIV can enjoy life just as much as younger people. "But in enjoying they are also liable to get infection," he adds. "And so we want to be out there getting the message to them and giving them the advantage of getting the information, appropriately speaking with their doctors, getting tested and having a life. ...The experience today is that most people over 50 that get diagnosed with HIV also get diagnosed with AIDS at the same time because the infections have been in their systems for a great length of time and the average life expectancy, unfortunately, for someone who waits that long is three months."

Like Rydwels, the soft-spoken Fowler has devoted her life to AIDS/HIV activism, doing speaking engagements across the country and in Canada, sharing her story in Modern Maturity and Good Housekeeping magazines and appearing on television news programs such as "20/20" and CNN's "Impact." Of the various groups to whom she speaks, she says the most difficult to reach is the elderly, who continue to think they are immune to the disease, or are uncomfortable discussing their sexual habits. "This is one of our problems...it's reaching the older people because they don't think they're at risk. My standard line [is:] `Look at this face, this old, wrinkled face. This is another face of HIV. It's not who you are, and it's certainly not how old you are or how young you are, it's what you do or what you don't do in regard to transmission.'

"My generation just does not for the most part discuss sex -- even though we're having it -- we don't discuss sex like younger people," Fowler adds.

Though HIV infections among older adults are on the rise, Jim Campbell, a co-coordinator of the NAHOF conference, says that some doctors are starting to catch on, but ignorance persists. "They are starting to respond and there are some very astute doctors and the primary care people are starting to look at it," says. "But a funny thing happens, too, as the doctors that people see kind of get younger and we get older. Some doctors are really embarrassed to ask sexual questions of women that look like their grandmothers or their mothers, or to ask them -- or just assume -- that there is no drug use in their family, or in their relationships or that they're just not at risk at all. So it gets very complicated and there's always that stigma of HIV and all [sexually transmitted diseases]." The key, says Campbell, is to normalize prevention efforts and make them a routine part of health care for all consumers, rather than hide STD clinics at the end of a hallway. "It hasn't happened in the gay community, either," he says, pointing to the 30-percent infection rate among gay men of color in some locales. Campbell also bemoans the fact that elders are not typically seen in ad campaigns.

Given that the topic of the day appeared to be more frank talk about sex in order to prevent the spread of HIV/AIDS among older adults, it was fitting that the highlight of the NAHOF conference was a lunchtime speech June 23 by Dr. Jocelyn Elders. After being appointed Surgeon General by then-President Clinton in 1993, Elders was drummed out of the position in a hail of controversy after just 15 months because of her public comment that students should be taught about masturbation in sex education classes.

In a speech peppered by anecdotes that brought frequent laughter and applause from audience members, Elders praised the work of NAHOF in reaching out to the elderly population regarding HIV, and encouraged doctors and people living with HIV/AIDS to communicate more effectively with each other. "We've got to be open. And you know it's hard to be open because we can't talk about sex in our society," she said. "That's just not a door that we can open. We've got to be sensitive and we've got to be supportive. We have got to make sure that we do appropriate risk assessments on our people over 50. Ask them the questions -- they don't mind giving you the answers. The problem is, is we doctors, we don't ... nobody ever told us how to take a sexual history. So we don't know that. ... Make your doctor learn; they can learn. They learned everything else, they can learn about this. Just get them involved and make them learn. If you feel that you're at risk, make sure you get tested."

Elders also encouraged public and private partnerships between churches, schools, businesses and the government as a means to combat the epidemic, saying that everyone needs to be involved. "We've got to reach out. We've got to be willing to take some risks. You don't have to take as many risks as I took," she said, drawing laughter from the crowd with the reference to her controversial candor. "We've got to educate and empower our people to take control."

Elders reminded the crowd that she has been on the forefront of fighting the disease since the epidemic began, and with a promise to work to form new partnerships to continue the battle. She closed by quoting a clergy member who once told her, "`When you're dancing with a bear, you can't get tired and sit down. You have to wait until the bear gets tired, then you sit down.' I want you to know that I'm always out there trying to get some new partners to help me dance with that old bear, so I can sit down."

She echoed that sentiment in an interview with Bay Windows following her speech, saying, "AIDS is still with us, we cannot be complacent. We've got to fight this disease until it's over. As I tell people all the time, this is not an affair -- it's a marriage. You've got to stay with it till the end."

01/06/01
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