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The Over-50 Crowd Relearns the Facts of Life

HIV infection is a growing fact of life for America's baby boomer population. But it's a fact both the aging and their caregivers are spectacularly unprepared to address.

Read part one: Aging With HIV

For years, single seniors would find the idea of meeting new people following a divorce, or loss of a partner, daunting at best. But with today's online dating services, success in finding the perfect partner is ostensibly only a click away — all you need is a computer and a little courage.

But Jane Fowler, retired journalist and now HIV/AIDS prevention educator, waves a red flag of caution for older singles. As founder and director of the national HIV Wisdom for Older Women, Fowler says that older single people — "the fastest-growing segment of the dating services" — may put themselves at risk by engaging in new relationships.

"The perception among both the older, public population and providers of health and social services is that seniors are not at risk for sexually transmitted disease, and as a consequence they have low awareness about HIV," Fowler said.

While HIV can pose health problems at any age, there is additional risk of having the virus as an older person. People 50 and over have less vigorous immune systems, and studies report that a majority of older adults have at least one or more chronic, age-related condition such as diabetes, arthritis or heart disease.

Fowler, a vibrant and active senior, has a personal commitment to HIV awareness for women over 50: She was diagnosed HIV positive in the mid-80s, having been exposed to the virus from an unprotected, heterosexual contact following her divorce.

"I am very concerned about women who, like me years ago, may be re-entering the dating scene after an absence of several decades," she said.

According to Fowler, AIDS cases in women over age 50 are reported to have tripled in the last decade. Furthermore, the findings of the recent landmark ROAH ("Research on Older Americans with HIV") study reported conclusive evidence that heterosexual contact is now the predominant mode of virus transmission.

"It is important to get the message out," Fowler said, "to both women and men over age 50, that unprotected sexual contact is a risk."

She said physicians do not typically discuss sexual behavior with their older patients, and this fosters a false sense of security that age imparts "some special kind of immunity." Plus, as people age and their immune systems weaken, many of the symptoms of age-related conditions, such as fatigue, dementia, weight loss and skin rashes, are very similar to those of HIV.

"When these symptoms are overlooked and attributed to natural aging, people who are HIV positive end up walking out the door," she said. "By the time they are diagnosed, they may be very ill and the window of opportunity to begin a therapy that helps prevent the virus from progressing to AIDS has already passed."

However, the problems of older people affected by HIV are, "much more than physical ones and a regimen of taking pills, " said Dr. Stephen Karpiak, lead investigator of the ROAH study. While the latest antiretroviral drug therapies allow people to live longer and healthier, their research data on the quality of life "paints an unsettling picture of the older person with HIV."

"More often than not, these older, HIV-positive adults are not only alienated by friends and family, they are afraid to disclose their status, and have few places to turn to for help," said Karpiak, who described "help" as "the little things that make the big difference."

"We're talking about having someone to help buy groceries, take you to the doctor or to church," he said. "Our study reported just how disconnected these people are from society — not just from their disease and its stigma but also because they are old with this disease."

There's a stereotype of older people as being no longer productive, with failing mental competency and low value to society. "There is this prevailing cultural attitude," recounted Fowler, "of 'so what if old people get HIV and die?' — the assumption being that they have already lived their lives and are no longer productive contributors." 

Need for Community Involvement

Dr. L. Jeannine Burkhardt-Murray, medical director of Harlem United Community AIDS Center, who helped Karpiak write the spirituality component of the ROAH study questionnaire, adds another dimension to the picture of social disconnection.

"Informal care giving by friends and family is provided to millions of people in this country who have chronic illness, disability, are elderly, or just need some day-to-day maintenance help," she explained. "But older people with HIV are often stepped over from potential sources of assistance because of persistent stigma and lingering misconceptions about virus transmission."

She added: "(It is) so unfortunate because we know that people who have outside contact with the community — not just the health arena of their doctors and nurses but with friends and family members — these are the ones who do the best."

Burkhardt-Murray said she has spent time over the years trying to engage local leaders of the religious communities into supporting people with AIDS.

The dilemma, said Burkhardt-Murray, who lives and works in the largely African-American community of Harlem, is that this is a population largely estranged by their family and friends who would turn to their church but find themselves unwelcome.

"For many years our clergy would not acknowledge this disease," she said. But after more then a decade of advocacy, she sees things changing and the church is now more willing to talk openly about HIV with its constituency.

This is good news since one of the ROAH findings, she said, is that many older HIV-positive people "expressed a positive benefit from a religious or spiritual affiliation."

An Intergenerational Approach to Breaking Barriers

For Ed Shaw, a tireless, 60-something-year-young HIV educator and chair of the New York Association of HIV Over 50, just "getting people to talk about this disease is an important step and can make a difference, one person at a time, to overcoming barriers."

Like Fowler, Shaw's mission for more than a decade has been to bring awareness to the risks of HIV in older people.

"I think that what we really need now is a bold, new vision, some real 'out-of-the-box' thinking," he said, explaining that his mission is to "tear down the wall" of barriers in communicating about HIV.

He developed what he calls the "intergenerational approach" to communicating about the virus. "What we need to do is connect whole families to start talking about health in general," he said, explaining that young people who are more likely to talk about sensitive issues like sexually transmitted diseases and AIDS can break down the barriers to talk candidly with the "older generations."

"I think when you get different generations to all sit down together — parents, kids, grandparents, aunts, uncles, whomever —you can all learn from each other, and this is key to breaking down traditional taboos of discussion," Shaw said.

Diagnosed HIV positive more than two decades ago, Shaw spends a lot of time in New York's community senior centers spreading his enthusiasm and "tearing down the wall" on HIV discussions. He says his "soft-sell approach works well" — using raffles, screenings and health fairs to promote senior attendance to his programs.

"Telling this story to older people is more than renting a space and handing out brochures," he said. "If you advertise 'come and learn about HIV in the elderly' you'll be talking to an empty room! I get people together to talk about aging and health from a wellness approach, then, we can introduce HIV as a discussion point."

Public Policy Recommendations for Unmet Needs

Based on the findings of the 1,000 participants of ROAH, the first study of an HIV-positive population age 50 and over, Karpiak and his colleagues have outlined policy recommendations that are needed to address the multiple social and health delivery issues of this marginalized population.

"There needs to be action on three fronts," he explains, "health care, and clinical research, and social policy."  The shorthand message is to educate physicians and advance an awareness of this aging population with HIV, to conduct research to learn about physiological effects, and develop programs to address unmet social needs.

"We need to address the problem of stigma and conduct public education and outreach awareness that targets the general public, and to also create prevention messages that targets older people," Karpiak said. "The medical community needs to realize all patients are at risk, and that those older people who have the virus need a different kind of care than someone who is in their 20s or 30s."

Karpiak calls for amendments in the Older Americans Act and its Caregiver Support Program elements. "We'd like to see HHS make specific provisions in programs and services and fund the Agency on Aging to pay for education and training," he said.

The researchers also envision local AIDS service organizations as the ideal resource who can provide specialized training to Area Agencies on Aging, to home health services and to other community outreach services who may have contact with older HIV-positive people as well as their typical client population.

The ROAH team also recommends more research on the medical and health needs of older HIV-positive people, including them in clinical trials, and implementing curricula in medical and nursing schools that address the specific needs and challenges of older people with the virus.

Video: Columbia University report on seniors with HIV