Edward Shaw has a broad and inviting smile, his glasses resting on the bridge of his nose. He doesn’t look like he’s 70. He talks about his life with ease, even when it comes to disclosing that he has lived with HIV/AIDS for the past 23 years.
Shaw is one of thousands of city residents over 50 infected with HIV/AIDS. In June 2009, of the 107,177 New York City People Living With HIV/AIDS (PLWHA), 42,442 were 50 years or older, according to a report from the Department of Health and Mental Hygiene.
Life expectancy in the first years of the AIDS epidemic was very low. A report from the Centers for Disease Control (CDC) stated that the average age of death for HIV/AIDS in 1991 was between 25 and 44 for men and between 15 and 44 for women. In 1994, death tolls were the highest, topping at 8,339 in New York City alone.
With the introduction in 1995 of protease inhibitors, a special class of drugs that prevents viral replication, AIDS ceased to be a sure death sentence. From then on, life expectancy has steadily improved, allowing HIV/AIDS sufferers to grow old.
Edward Shaw remembered when he was diagnosed in 1988. He thought he was going to die. He was alone, his wife and daughter had left years before because he was using drugs. Now, with treatment, he is still healthy in his 23th year with the disease.
People like Shaw, who have aged with the virus, are a majority of those with the disease. They are the new face of AIDS.
In 2006, a report issued by Weill Cornell Medical College announced that an American diagnosed with AIDS could expect to live about 24 years on average. A 2007 CDC report said more than 65 percent of all people with the disease were 40 or older.
A complex treatment regime known as Highly Active Anti-Retroviral Therapy (HAART) is largely responsible for this longevity. Living longer with HIV/AIDS also has its downsides, however.
“The treatment lengthens the life span, but people who have AIDS look older than they are, and their health is worse”, explained Daniel Tietz, executive director of AIDS Community Research Initiative of America, an organization that has studied the effects of AIDS for the past 20 years.
In older adults living with the disease, age-related afflictions—diabetes, hypertension, osteoporosis and cancer—affect them with greater intensity. As both HIV/AIDS and age diminish the production and beneficial effects of T cells—a vital part of the body’s immune system—older adults have a weaker immune system.
Depression, common among older adults, is even higher in those infected with HIV/AIDS: up to five times more than the general New York City population, as reported in a study from the AIDS Community Research Initiative of America. People don’t show it, as it can be masked by mood swings and physical aches. “By suppressing the immune system, depression may render people more vulnerable to infectious diseases,” a report issued by this agency states.
Denial and heightened drug consumption drove Edward Shaw’s life between 1988 and 1993: “I don’t want to blame drugs, but I was depressed and did things that were not positive for me.” Pneumonia, thrush and a heart attack resulted from his behavior.
After the heart attack Shaw knew he needed help. He told his family and was surprised to find their support: “At the time there was so much stigma. When I told them, I started to cry, but they just hugged me and said they loved me.” He entered treatment in 1993 and began community work, a vital part of his life.
“I’m active as can be, and I’ve overcome the main obstacles. It has been a long process but it’s important not to give up. When I told my siblings that I was infected they accepted me.”
Nelly was born in Puerto Rico 52 years ago. Her skin doesn’t reveal her age, or the fact that she has been infected since 2001. Her husband, who died from AIDS related complications in 1996, was a frequent drug user and infected her by unprotected sex. She had cared for other infected relatives before, so she took the diagnosis calmly. Looking back, she partly blames herself on what happened: “I knew of the disease and the risks. I should have protected myself.” She tries to live a positive life for her family and her children, staying healthy.
Another group swelling the ranks of people living with HIV/AIDS is adults infected when they are already seniors. Recently infected seniors are less common than people who got it at a younger age, accounting for about 16 percent of new infection cases, according to a 2007 CDC report.
The number is on the rise because of risky sexual behavior. For seniors, contraception is not a priority. “After a certain age, a lot of people stop worrying about condoms, especially if pregnancy isn’t an issue any more,” said Naomi Schegloff, MPH, Co-Director of The Graying of AIDS project.
Heterosexual women are the most vulnerable part in this equation. Since they tend to outlive men, there are less available choices, especially if they are in a closed environment such as a nursing home:
“Since there are fewer men, he can have two or three ladies, refuse to use a condom and say no to a woman. She will feel unwanted, making her vulnerable for infection, because she might yield,” said Lisa Frederick, the associate director of literacy at the AIDS Community Research Initiative of America.
Hypoestrogenism—vaginal dryness—also increases a woman’s risk of infection as she ages. Without the natural lubrication, abrasions are more likely during sex and, as Frederick put it, “the doors are left wide open for infection.”
Homosexual older men also neglect condoms, suffering from something known as “condom fatigue”:
“We’ve heard reports from activists who cite condom fatigue as a problem among some older MSMs (men who have sex with men),” Schegloff explained. “They’ve been practicing safe sex for decades and some of them are just sort of burnt out on condoms and are sero-converting later in life after staying negative for years.”
People are reluctant to tell doctors about sexual practices, either because doctors don’t ask about them, or because there still is an anti-gay stigma that keeps older adults from disclosing their sexual behavior to a caregiver. Half of infected men over 50 have stated they do not know how they were infected, according to a 2009 report from the Department of Health and Mental Hygiene.
Risk increases if elders are part of an ethnic minority. According to a 2009 report issued by the Department of Health and Mental Hygiene, Hispanics and African Americans are the groups where there are more infection cases in people over 50. These are closed communities, mostly because of language and race. The disease then tends to stay in that circle.
“Whom do you look for when trying to find a partner? Blacks will look for blacks, Latinos look for Latinos. That keeps the virus circulating within these communities,” said Frederick.
Edward Shaw has volunteered since 1993, sometimes in senior centers. There, he saw two predominant attitudes: denial, and a sexual activity that hadn’t stopped with age. “In their mind, they will say ‘it doesn’t happen to me’. That’s their attitude. I’ve been to senior centers in Connecticut, and they talked about how they engaged in multiple sexual activities. They could get infected. They don’t realize it.”
There is a general consensus that the public needs to become aware of this health risk. Changes have been made, such as the 2009 announcement from the federal government that Medicare would cover HIV tests for people over 65. There is still no cure for the disease, but through early treatment, and education, numbers can be reduced.
Nathan Schaefer, director of public policy at Gay Men’s Health Crisis, said doctors must make testing part of their routine exams, and stop mistaking the symptoms of HIV/AIDS for those of aging.
“Early detection means that patient can be controlled, stopping the risk of him or her infecting other people. When doctors don’t diagnose and don’t treat on time, then they become an agent of infection. Treating the disease timely means that the infection can be controlled, giving older adults a better life,” said Schaefer.
The main goal for the future is to create awareness and change the mind frame of the entire community, both young and old, said Luis Scaccabarrozzi, director of HIV education at the AIDS Community Research Initiative of America. Educating is key if there will be a change in perspective: “It´s tough to change the mindset of a generation, so we have to educate constantly. We all have to learn to care for ourselves, so we can care for others as well.”
From her own experience, Nelly says that the best solution is to talk and get to know the people you sleep with, and to take the test.
“Doctors put people in categories: if you’re married, if you’re a drug user, ” she said adding that “[it] doesn’t work. Because you know what you do, but not what your partner does.”
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