Generation Gap
positive and pushing fifty
by Cindra Feuer

Two tanned grandmothers on a fixed income sharing diabetes syringes in a retirement community in Florida. A divorcee who's found new love like she's never known before. A church going unsuspecting wife of 35 years. These may not be the images one has of women with HIV, but they represent a group that is becoming increasingly vulnerable in this epidemic. All over 50, these women have fallen through the cracks in HIV prevention, where messages lean heavily toward youth. Today, cases like these make up 11 percent of AIDS diagnoses in the United States.

"I got very sick," says Fay Benjamin*, a soft-spoken, 63-year-old self-described "churchy" woman from rural South Dakota, who's been living with HIV since her late 50s. "I kept going to the doctor and he kept giving me antibiotics, and he would just kind of hit-and-run. He thought it was menopause, arthritis, high blood pressure, possibly a heart problem. . . After two years of this, I pulled on his sleeve and told him to sit down a minute. He said, 'The only thing I can think of is really nasty, and you don't want to know.'"

Benjamin's story is typical of HIV-positive older women. The majority become infected through sexual contact with a husband or boyfriend. After months and sometimes years of being sick, they're tested for HIV as a last resort. Health care providers routinely fail these women by not readily screening them for HIV and other sexually transmitted diseases. They also neglect to ask about their sexual and drug-using behaviors. Ailments that accompany HIV often masquerade as signs of aging, throwing physicians even further off track. Fevers, night sweats, tuberculosis, chronic fungal infections, shingles, decreased vision, Pneumocystis carinii pneumonia, and cervical cancer can signal HIV or AIDS or aging.

Getting Busy
To make matters worse, HIV prevention efforts for the over-50 crowd are few and far between. Until the advent of safer blood screening in 1985, most older people contracted HIV through blood transfusions. From 1991 to 1996, the number of cases of HIV in women over 50 years old attributed to heterosexual sex increased 106 percent, according to the latest figures from the Centers for Disease Control and Prevention. Viagra, divorce, and longer life spans have meant more sexual activity for older people-life expectancy hit a record high of 76.7 years in 1998. With the the birds and the bees chirping and buzzing louder than ever, why haven't prevention messages sounded beyond a murmur? "Look at the HIV prevention literature out there. You won't see a gray hair on it, not one bald head," says John Gargotta, director of the Senior HIV Intervention Project (SHIP), an agency that works in three counties in southern Florida. No wonder that people over 50 are one-sixth as likely to use condoms as their children and grandchildren, according to the National AIDS Behavioral Surveys.

Those who came of age before the sexual revolution may still have a difficult time broaching sexuality in conversation. As Benjamin puts it, "I grew up in the 50s. Talk of sexuality was kind of whispered. Now, good heavens, my granddaughters can tell me more than I ever knew when I was their age." Gargotta softens the language in his HIV prevention presentations. "We can't come in and start talking about a 'penis' the way we might start talking [about it] to a younger population," he says. "We can't come in and tell them, 'You're at risk.' We say, 'Come on. You're grandma and grandpa-we need your help.'"

Tiptoeing around the topic of condoms seems the norm. Sue Saunders, a 66-year-old AIDS activist, tells her story: "He was 10 years older than I was and he said, 'I've never worn a condom in my life and I'm not going to start now.' Most older men say that. Older women won't insist that the man wear a condom. They don't ask where he's been. Older women especially don't pry." Benjamin agrees, adding, "They can no longer have children, so why bother with condoms? Usually they tend not to be very assertive until they get HIV or an STD."

Last Suspected, Last Tested
Health care providers overwhelmingly subscribe to the stereotype of the abstinent, asexual older woman and may be remiss in seeking information on high-risk behavior in these patients. As Saunders puts it, "A young doctor talking to an older woman about sex-they don't do that." Older adults are less likely to get tested for HIV than other age groups, which may lead to underreporting of AIDS cases, suggest researchers at the SHIP project. And members of the over-50 crowd who fall into high-risk groups are one-fifth as likely to be tested as their 20-something counterparts, according to Ron Stall, a researcher for the National AIDS Behavioral Surveys. Gargotta says there are older folks out there sewing their oats who think that they've already been tested. "When they go to their physician and get some blood work done, they think that an HIV test was done," he says. "In fact, there is a separate test, and they need to have a consent form signed."

Most seniors are first diagnosed with HIV in the hospital when they've already progressed to AIDS. Benjamin found herself in the emergency room after two years of misdiagnosed infections, monthly visits to her primary care doctor, and an allergic reaction to daily doses of penicillin. That's where she was tested for HIV. "I think it's very important the way the doctor treated me. I would like doctors brought up-to-date, so they're in the next century, not left behind in the 18th." Older women are prone to the same conditions as their younger counterparts: cervical dysplasia, Pneumocystis carinii pneumonia, tuberculosis, mycobacterium avium complex (MAC), herpes, cytomeglovirus infections, and most commonly, progressive multifocal leukoencephalopathy (PML).

Early onset of HIV can manifest itself as weight loss and fatigue, symptoms that can be wrongly interpreted in those over 50 as depression, thyroid, or metabolic disorders. "The biggest problem was that I had complete fatigue," Benjamin says. "The doctor said, 'You may have chronic fatigue syndrome.' I had a prior diagnosis of clinical depression, so he tended to put most of this onto my depression." HIV-related brain infections occur frequently in people with advanced HIV disease and may be misdiagnosed in older people. For example, AIDS-related dementia may be mistaken for Alzheimer's disease. Diagnosis is complex; one telling sign is aphasia, a language disorder that is present in Alzheimer's but not in most AIDS-related brain infections. Cognitive impairment caused by HIV should also improve with antiretroviral therapy.

Missed diagnoses can be fatal. The latest CDC findings show that a higher proportion of HIV-infected people over 50 die within one month of their AIDS diagnosis than those under 50. Such rapid progression to AIDS from diagnosis suggests that physicians aren't offering therapy for opportunistic infections or HIV until it's too late.

An age weakened-immune system can also hasten the disease. "The older you are when initially infected, the more rapid your disease progression will be," says Dr. Robert Kalayjian of MetroHealth Medical Center in Cleveland. "We don't know why this is." In an aging immune system, T-cells may not be replaced as rapidly or may be nonfunctional. "We know that age does some of the same things the virus does to the immune system." Along with a late diagnosis, that may help explain why older people get sick and die faster. According to 1997 figures from the CDC, 86 percent of individuals under age 15 lived at least 10 years after seroconversion, compared with only 12 percent of people over 55.

Treatment and Aging
Treatment of HIV disease in seniors is a complex business. Many illnesses that accompany aging such as heart conditions and high cholesterol, may be exacerbated by either HIV or the drugs used to treat it. Drug-drug interactions also pose a problem. Chronic heart, liver, respiratory, circulatory, and gastrointestinal conditions common to older people require drugs that may mix poorly with HIV treatments, especially protease inhibitors. Prime examples include cholesterol-lowering statin drugs such as Zocor, Lescol, Mevicor, and Baycol; cardiovascular drugs like amiodorone and dilitiazem; and anticoagulants like Coumadin.

Interestingly, studies suggest that older people respond well to HIV therapy. As experienced pill poppers, they may find it easier to adhere to difficult drug regimens.

These issues particularly affect older women, who are typically left out of clinical drug trials (see "Standing Trial"). We know little about how drugs act on older women with HIV. Alcohol, aspirin, beta blockers, tricyclic antidepressants, and oral contraceptives are known to metabolize differently in postmenopausal women. What about HIV antiretroviral drugs? How are they absorbed in older women? How well do they work in an elderly woman who's immune system is more vulnerable than that of someone younger? Similarly, no trials have measured metabolic effects of antiviral treatment in older women.

Kalayjian has embarked on a potentially significant clinical trial testing how HIV combination therapies work in younger versus older women and men. He's specifically measuring HIV levels in the genital tract to determine the difference in viral shedding (the amount of virus being produced) in these two age groups. But unfortunately, the study won't directly address whether postmenopausal women are more vulnerable to HIV through their genital mucosa. It is speculated that estrogen deficiencies can lead to thinning of the vaginal wall and less lubrication, which can increase susceptibility to the virus.

Jane Alta*, a 49-year-old positive woman who's approaching menopause, is hungry for more sound scientific information. "I would really like to see information on HIV and how it affects menopause and how we can keep ourselves healthy through that period," she says. "The NNRTIs (non-nucleoside HIV drugs) cause really high triglycerides, and postmenopausal women are also at risk for high triglycerides. So what can we do to reduce these kinds of risks?" Other HIV drug classes also increase fats in the blood.

So spread the word: Women over 50 have sex. And because they do, there's an urgent need for health care providers and the HIV community to get involved in their prevention needs and care. Then perhaps Fay Benjamin's wish can come true-that the new century is one in which older women get diagnosed in a timely manner, where clinical trials include postmenopausal women, and where condoms become as popular as Bingo on a Saturday night.

Cindra Feuer wrote about new treatments for IV drug users in our Feb./March issue.