Increasing numbers of older Americans are coping with HIV infection and stigma
Increasing numbers of older Americans are coping with HIV infection and stigma
Their number has more than tripled in recent decades.
As people infected in their 30s and 40s have survived due to antiretroviral therapy, and as older Americans continue to have active sex lives past age 50, the number of older Americans infected with HIV has swelled in recent years.
Between 1994 and 2000, the number of adults age 50 and older living with AIDS tripled, while the overall population of people living with AIDS had not quite doubled in that same time period, according to surveillance data from the Centers for Disease Control and Prevention (CDC).1
More recent surveillance data show that while adults ages 25 through 49 years have had declining numbers of estimated cases of HIV/AIDS between 2001 and 2004, the estimated numbers of cases for adults 50 years and older have edged up.2
Scientists and clinicians who work with this population of older HIV patients say there are a variety of problems HIV patients over age 50 deal with, including higher pill loads, dual stigma of ageism and HIV infection, later diagnosis, and more comorbidities.
Too few physicians screen the elderly for HIV infection, says Kathleen Casey, MD, chief of infectious disease at Jersey Shore University Medical Center of Neptune, NJ. "There have been a significant number of elderly HIV patients in my practice all along," Casey says. "They're both men who have sex with men (MSM) and heterosexual, and they've done amazingly well with the medications, as well as younger HIV patients, if not better."
But the problem is that they're being diagnosed late. "They're out there walking around with HIV and no one has a clue they're positive," Casey says. "The country's perception of this disease is not one of elderly people, and there's been no real thought given to how we cope with having many people surviving years with this disease."
Older HIV patients tend to present at a later stage of the disease, says Kelly A. Gebo, MD, MPH, an assistant professor of medicine, epidemiology, and director of the public health studies program at Johns Hopkins University in Baltimore, MD. Gebo also is the director of the infectious diseases post-doctoral fellowship program.
"They aren't being screened because doctors think they aren't having sex or aren't doing drugs and so aren't likely to get HIV," Gebo says. "One of the most important things is for doctors to ask patients about HIV risk factors, and I think if they ask them these questions they'll get honest answers," Gebo says. "A lot of doctors say, 'I can't ask that because the woman looks like my grandmother.'"
Gebo tells doctors and patients that she asks these same questions of everyone between the ages of 12 and 112: "I ask everyone, 'Are you sexually active with men, women, or both?'" she says. "I ask about each different relationship, and I ask how much alcohol they're using."
Gebo also asks about their history of drug use, and she tells patients that she doesn't discriminate, and she's not asking these questions based on how they look or because of the reason they came to see her. "I ask these questions of everybody who comes to me, and people usually are pretty honest," Gebo notes. "They tell me that at one time they used drugs or may have had a gay relationship."
In a CDC report of AIDS diagnoses that divided cases according to whether people were diagnosed with AIDS 12 months or longer after their HIV diagnosis or less than 12 months after diagnosis of HIV, the older people were diagnosed the latest.1
For example, only 14 percent of people ages 15 to 19 years were diagnosed with AIDS within 12 months of their HIV diagnosis, while 59 percent of adults 65 years and older were diagnosed with AIDS within 12 months of their HIV diagnosis.
For the 50-54 age group, 49 percent were diagnosed with AIDS within a year of their HIV diagnosis; 48 percent of 55-59 year olds, and 54 percent of 60-64 year olds likewise had an AIDS diagnosis soon after their HIV diagnosis.3
These late diagnoses cut into patients' survival rates, and it means they are much sicker than younger HIV patients when they are first seen by an HIV specialist, says Anthony K. Wutoh, PhD, RPh, a professor at Howard University, School of Pharmacy, in Washington, DC.
"Anecdotally, at least in the clinics I have worked with, we're seeing more recognition that this is a growing concern," Wutoh says. "It's particularly a concern among minorities, and clinicians at least need to consider HIV as a risk in populations that are engaging in high-risk behaviors."
Washington, DC, has started a major campaign to promote HIV testing among all residents, from their teens to their 80s.
"There's a greater recognition of HIV as a potential problem for older people, compared with 10 years ago," Wutoh says. "Particularly in DC and the Baltimore area, since HIV incidence is much higher in this area."
Although the CDC has started a new campaign to encourage physicians and hospitals to screen the general population for HIV, the CDC recommendations do a disservice to older people, Casey says. "For some bizarre reason the CDC decided to say people should be screened up to age 64, and I think that's crazy, especially in the days of Viagra," Casey says.
When Casey speaks at conferences about HIV screening, she makes a point that screening should continue well past age 64.
Older widows and widowers continue to have sex, and they may not bother with condoms since they think of these in terms of protection against reproduction, says Charles A. Emlet, PhD, MSW, ACSW, an acting director and associate professor in the social work program at the University of Washington, Tacoma.
The percentage of estimated HIV/AIDS cases in the United States involving people age 60 years and older has increased from 2.8 percent in the 1981-1995 period to 4.2 percent in the 2001-2004 period, CDC data show.4
"If you look at the CDC data there have been some cities, like New York, Los Angeles, and Seattle, where the proportion of people with HIV/AIDS over age 50 is more than 20 percent," Emlet says.
Contributing to this increase are the older adults who have been infected for 8 to 15 years, survived the early years of their infection through aggressive antiretroviral therapy, and now are over age 50, Emlet says.
Whether older HIV patients were infected recently or a decade ago, they often express concern about ageism and HIV stigma, as well as dual discrimination, Emlet says. (See story about psychosocial problems and HIV infection in older Americans, page 16)
"People experienced rejection, which is a major theme, whether it was by a family member, friends, church members, or service providers," Emlet says.
Experts say another area of concern with older HIV patients involves their perceptions of antiretroviral therapy.
One study of older HIV patients found that most saw the benefits of taking antiretroviral medication, although a portion declined the medication and 21 percent of the patients used alternative therapies, such as vitamins or alternative medical practices, either in conjunction with antiretroviral therapy (ART) or instead of it.5
"We conducted the study of 100 older, meaning age 50 or above, HIV-infected adults in 2 fairly large HIV clinics in DC," Wutoh says. "Essentially, what we wanted to know was what was their experience in terms of treatment and attitudes regarding HIV."
Researchers found that most patients didn't perceive there to be significant barriers to ART in terms of side effects or costs, Wutoh says.
"We were able to show that among the patients who were using antiretrovirals consistently there was also a clinical benefit that their viral loads were much lower, and, essentially, there was a clinical benefit to their adherence," Wutoh says.
In all, 13 of the 100 patients included in the study had declined ART, and some of these people were not using any alternative therapies, as well, Wutoh says.
All of the patients, including those who declined drugs, were seen regularly at a well-regarded health clinic where physicians promoted the virtues of antiretroviral therapy, so it was surprising that so many refused ART, Wutoh notes. "Even if we accounted for a number of those who had severe adverse events or developed resistance to other therapies, it still was an alarming number," he says.
"One of the things we were interested in assessing among those who were not using antiretrovirals was how that was related to their attitudes and perceptions," Wutoh notes. "And it was fairly consistent that those who had a low perception about the value or usefulness of antiretrovirals were less likely to take them." These patients either didn't think ART was beneficial, or they were concerned about side effects or some other negative impact of the treatment, so they preferred not to take them, Wutoh explains.
Investigators asked patients to respond to the following kind of statements, Wutoh says:
- I believe HIV medication will prolong my life.
- I believe HIV medication will delay my getting AIDS.
- Taking HIV medication makes my mind more at ease.
- I have trouble getting my prescriptions filled.
- I have to take too many medications.
- I'm concerned about the medications working.
"We asked if they were currently taking HIV medication, and among those who said, "No," we did not ask if they had ever taken them," Wutoh says.
Patients included in the study had a mean age of 55 years and had been diagnosed with HIV for about 7 years on average, Wutoh says. Three-quarters of the patients were African Americans, he adds. Also, 74 percent of the patients had at least a high school education, and more than half had an income of less than $10,000 per year. Also, 35 percent had reported being MSM as their HIV risk factor, while 21 percent reported heterosexual transmission and 24 percent reported injection drug use (IDU).5
"About 15 percent -- not a tremendous number of patients -- indicated they had been diagnosed with a sexually transmitted disease (STD) within the previous 6 months, which suggested they were engaging in unprotected sex recently, despite their HIV status," Wutoh says.
Clinicians should keep in mind that older patients may be sexually active and at risk for HIV, and screening for the virus should be as routine as screening for high cholesterol, Casey says. "Every-one should be tested and there shouldn't be a cutoff at age 64," Casey adds.
References:
- Annual number of adolescents and adults living with AIDS, by sex and age at the end of the year -- United States, 1994-2000. CDC 2003 report;9(1):Table 18. www.cdc.gov.
- Estimated numbers of cases of HIV/AIDS, by year of diagnosis and selected characteristics of persons, 2001-2004 -- 35 areas with confidential name-based HIV infection reporting. CDC 2004 report;table 1. www.cdc.gov.
- Estimated distribution of persons with and persons without a diagnosis of AIDS within 12 months of diagnosis of HIV infection, by selected characteristics, 2003 -- 35 areas with confidential name-based HIV infection reporting. CDC 2004 report;table 2. www.cdc.gov.
- Epidemiology of HIV/AIDS -- United States, 1981-2005. MMWR. 2006;55(21):589-592.
- Wutoh AK, et al. Treatment perceptions and attitudes of older human immunodeficiency virus-infected adults. Res Social Adm Pharm. 2005;1(1):60-76.
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