Growing Older With HIV/AIDS: New Public Health Challenges

Abstract

At present, the health care infrastructure is ill-equipped to handle the unique treatment and care needs of HIV-positive older adults.

The long-term effects of antiretroviral use are still being discovered and have been associated with a number of comorbidities. Stigma presents challenges for those in need of services and health care, and can significantly affect mental health and treatment adherence.

The training of elder service providers and health care providers in meeting the needs of HIV-positive older adults, including gay and transgender people, is needed as the population ages. HIV-related and antigay stigma should be challenged by social marketing campaigns. Continued research and key policy changes could greatly improve health outcomes for HIV-positive elderly persons by increasing access to treatment and support.

THE ADVENT OF ANTIRETROVIral medications (ARVs) has enabled HIV-positive people to live increasingly longer lives. Those in the developed world who begin highly active antiretroviral treatment (HAART) at an initial CD4 count above 200 can expect to live well into their 70s.¹

Worldwide the leading cause of death among people living with HIV/AIDS is tuberculosis.² In the United States tuberculosis is very rare. Less than one third of deaths among people with HIV/AIDS in the United States are now attributed to diseases traditionally associated with HIV infection, such as Kaposi’s sarcoma.³ Liver disease and cardiovascular disease, both associated with long-term use of ARVs, are leading causes of mortality among older people living with HIV.

Longer life expectancy is already evident; by 2015 more than half of the HIV-positive population in the United States will be aged 50 years and older.⁴ Most older adults living with HIV/AIDS were infected in youth or middle age; only 1 in 9 new HIV infections in the United States occurs among people aged 50 years and older.⁵

Aging with HIV/AIDS presents biomedical complexities only now beginning to reveal themselves. Higher rates of comorbidities are among the more severe biomedical issues facing older adults with HIV/AIDS.⁶ Widespread cognitive impairment among people on treatment of a long time could be caused by “chronic HIV-driven inflammation in an aging brain.”^7(p1) Answers to critical research questions regarding how HIV medications interact with medications to treat other conditions are still in the nascent stages. In this article, we examine what we know about growing older with HIV/AIDS, identify gaps in knowledge, and provide recommendations to enable public health professionals to better treat and care for the burgeoning population of HIV-positive older adults, and reduce infections among older adults.

LONG-TERM EFFECTS OF LIVING WITH HIV/AIDS

As HIV/AIDS has shifted to a chronic, largely manageable condition, thanks to the advent of antiretrovirals in the mid-1990s, long-term effects of living with HIV/AIDS and on antiretroviral treatment are emerging. For many with the virus, HIV/AIDS is no longer the primary health concern. Rather, many are dealing with the early onset of multiple comorbidities. A recent study of 180 HIV-positive people aged 50 years and older found a mean of 3.4 comorbidities. Most had received an AIDS diagnosis.⁸ More research is needed to sort out the causality of HIV/AIDS and HIV treatments in comorbidities, and the interactions of antiretrovirals and other medications.

Older adults’ ability to metabolize ARVs is diminished and may result in increased toxicity.⁹ Long exposure to HAART may increase the risk of heart attack¹⁰ and heart disease resulting from specific classes of ARVs.⁶ HIV-positive older adults are at greater risk for dying or contracting new illnesses.⁹ Research also shows that HIV infection and HAART are associated with obesity,¹⁰ which presents additional risk factors for heart disease.¹¹

Preexisting cardiovascular, hepatic, and metabolic complications are often exacerbated by HIV infection itself, immunodeficiency, and by metabolic syndrome and other adverse effects of combination antiretroviral therapy.¹² Careful selection of ARVs and close monitoring of medication effects is essential.¹³ People living with HIV on ARVs for many years should be assessed and, if appropriate, treated for cardiovascular disease.¹⁴ Many ARVs can cause liver toxicity. For HIV-positive people coinfected with hepatitis, the interaction of ARVs and cholesterol medications can cause liver toxicity.⁹ Doctors should weigh the risk of drug-induced liver injury, especially among patients with hepatitis B or hepatitis C coinfection, as well as other risk factors (including female gender, alcohol abuse, older age, and obesity).¹⁵ Other side effects resulting from ARV use include lipodystrophy, osteoporosis, pancreatitis, peripheral neuropathy, and buildup of lactic acid.⁹

Further health complications may result from the interaction of ARVs and medications used to treat other conditions. This is particularly critical among older adults with HIV/AIDS who have an increased incidence of comorbidities, and are more likely to be taking 2 or more drugs for different conditions at the same time. Research to date suggests that certain combinations of ARVs can cause abnormal bone metabolism, especially among those who undergo continuous therapy versus intermittent therapy.¹⁵

In addition to being more susceptible to comorbidities, older adults with HIV/AIDS are at greater risk of developing cancer. Compared with the general population, people with HIV experience a significantly higher incidence of cancers, including Hodgkin’s lymphoma, leukemia, melanoma, and colorectal, renal, anal, vaginal, liver, lung, mouth, and throat cancers.¹⁶ We also know that Americans aged 65 years and older experience 60% of all incident cancers and 70% of deaths from malignant tumors.¹⁷ Therefore, cancers are a particular concern to older adults living with HIV.

Incidence of anal cancer, a rare cancer among the general population, is more common among people with HIV.¹⁸ In a multicohort study of about 35 000 HIV-positive men and women and 115 000 HIV-negative men and women, HIV-positive men who have sexual intercourse with men (MSM) had a demographically adjusted rate ratio of 3.3 of having anal cancer compared with other HIV-positive men. HIV-positive men and women experienced anal cancer at the same rate, and no HIV-negative women had anal cancer.¹⁸ Compared with the general population, HIV-positive MSM are up to 40 times as likely to get anal cancer.¹⁹

Since the advent of HAART in 1996, non–AIDS-related cancers, including anal, cervical, liver, and lung cancers, have become more common among people with HIV than AIDS-related cancers, such as Kaposi’s sarcoma and non-Hodgkin’s lymphoma.²⁰ Furthermore, research shows that mortality rates among people with HIV related to non–AIDS-related cancers are higher than the mortality rates associated with AIDS-related cancers.²¹ The relationship between HIV/AIDS and non–AIDS-related cancers is unclear. However, early studies suggest that immunodeficiency is associated with greater risk of non–AIDS-related cancers’ development.

Aging and HIV/AIDS have drastic effects on the immune system; each lower the production of T cells needed to defend the body against infection. Furthermore, evidence suggests that HIV may accelerate the aging process,⁴ and reduce an individual’s T-cell count in a similar way to someone who is 20 to 30 years older.²¹ A decreased production of cytokines, which regulate T-cell production and maintenance, and a negative impact on naïve B cells, which produce antibodies in the immune system, are also associated with the natural aging process.⁴ Thus, the combination of HIV/AIDS and aging on the immune system leaves HIV-positive older adults susceptible to chronic immune activation.⁴

Despite increased longevity, differences in life expectancy between HIV-positive and HIV-negative populations remain. Research shows that the immune systems of older adults with HIV receiving antiretroviral therapy do not recover as quickly as those of younger HIV-positive adults.²² Another study revealed that, with treatment, increase in CD4 counts was less rapid among older adults compared with younger adults, which is critical given that low CD4 counts are associated with increased morbidity and mortality.⁶ Decreased CD4 count is also associated with increased risk of heart disease, kidney disease, liver disease, and cancer.²³

HIV can have adverse effects on the brain, making older adults with HIV more susceptible to negative mental health outcomes such as depression, dementia, and Alzheimer’s disease. One study showed that older adults with detectable levels of HIV in their spinal fluid are twice as likely to have psychological impairments compared with those with no detectable virus.²⁴ A study utilizing functional magnetic resonance imaging scans found lower than normal blood flow to the brain among people with HIV, similar to levels typically seen in people aged 15 to 20 years older.²⁵ Though the effect of HAART on mental health is unclear, some research suggests that antiretroviral therapy may increase the risk of Alzheimer’s disease,²⁶ depression, and other psychiatric side effects.¹¹ Unfortunately, mental health needs of people with HIV/AIDS are often not addressed by physicians who primarily focus on the physical effects caused by HIV and ARV use, despite research indicating that depression can exacerbate immune system dysfunction.²⁷

A number of studies have found high rates of depression among older people living with HIV. Heckman et al. found that 29% of a sample (n = 113) of HIV-positive adults aged 45 years and older had moderate to severe depression; 31% had mild depression.²⁸ A study by the AIDS Community Research Initiative of America and Gay Men’s Health Crisis of 180 adults aged 50 years and older found that 53% had depression.⁸ The AIDS Community Research Initiative of America’s Research on Older Adults with HIV study of nearly 1000 New Yorkers found that 52% had depression.²⁹

AGE COHORT DIFFERENCES

There are significant differences between a 50-year-old person living with HIV/AIDS and a 75-year-old person living with HIV/AIDS. The experience of people recently infected with HIV also varies greatly from those infected early in the epidemic. People infected or diagnosed with HIV in the 1980s, before effective treatments, struggled with uncertainty and tried to assert control over their lives.³⁰ Many people living with HIV in the first decade of the epidemic sought to ensure that their disease did not define their lives, and struggled to accomplish professional goals in their few remaining years despite their HIV status. In response to stigma-related rejection, many surrounded themselves primarily with other HIV-positive people. Vigilance about disclosing their status and in regard to their health was also commonly reported among people living with HIV/AIDS in the pre-HAART era.³¹ Of course, because of persistent HIV stigma, such vigilance continues into the present. HIV stigma has been associated with decreased life satisfaction.³²

Now, in the HAART era, increasingly people can live many years with HIV/AIDS, keep opportunistic infections at bay, and experience HIV/AIDS as a chronic health condition. This has led many people to reexamine work and their careers, and to seek to have an intimate life of dating or having a partner.³³

A number of studies have shown that quality of life decreases with age, “mostly due to age-related physical decline.”^34(p1858) Older people living with HIV report lower levels of physical ability and less independence compared with younger people.³⁴ One study that examined gender and age differences in reported quality of life found that women reported lower scores of psychological and spiritual quality of life than men, and that “overall” women aged 45 years and older reported lower quality of life scores than men reported.³⁴ People with HIV of all ages experience poorer emotional well-being compared with the general population and patients with other chronic diseases with the exception of depression. People with asymptomatic HIV report physical functioning similar to that of the general population, whereas those with symptomatic HIV disease have “much worse” physical functioning.³⁵

For the 600 000 or more people living with HIV in the United States who are gay or bisexual men, the historical context of cultural attitudes toward homosexuality during their formative years shapes their identity. Younger gay or bisexual men may more successfully manage gay-related stigma than older gay men because of stronger support systems compared with 20 to 30 years ago.³⁶ For caregivers of people with HIV, social attitudes—including family rejection of gay men with HIV/AIDS—shapes the meaning of caregiving and its impact on lives.³⁷ Just as the life-course perspective—which holds that age cohort differences influence health needs and vulnerabilities—should inform research on the health of lesbian, gay, bisexual, and transgender (LGBT) persons,³⁸ it also offers a useful framework for understanding HIV-related life events and transitions.

Gerontological research distinguishes among the “young-old,” aged 65 to 74 years; the “old-old,” aged 75 to 84 years; and the “oldest old,” aged 85 years and older. In general, frequency of illnesses and chronic conditions increases with age.³⁹ The Centers for Disease Control and Prevention (CDC) estimates that 38 400 Americans aged 65 years and older were living with HIV in 2008, of whom 4100 were undiagnosed.⁴⁰ The CDC does not provide a more granular breakdown of age for people aged 65 years and older. Understanding how different elder age cohorts experience HIV and other comorbidities is a key HIV and aging research objective.

SOCIAL SUPPORT AND SOCIAL ISOLATION

HIV-positive individuals aged 50 years and older are more socially isolated than their younger counterparts.⁴¹ Whereas most older Americans rely on family members during times of illness,⁴² older HIV-positive individuals perceive many barriers to receiving emotional and instrumental social support from friends and family. These include concealment of HIV status and others’ fear of casual transmission of HIV.⁴³ The social stigma associated with AIDS and the sexual and drug-using behaviors through which many people become HIV-infected can also limit caregivers’ ability to access traditional social support networks and institutions of support, such as the African American church.⁴⁴

For some people living with HIV/AIDS, HIV-positive peers replace those lost because of HIV-related stigma and rejection.⁴⁵ Many men living with HIV perceive their mothers to be significant providers of emotional support. However, in a study of 118 HIV-positive men in the southeastern United States (mean age = 44.4 years), men aged 40 years and older were less likely to receive support from their mothers, often saying that their mothers were too old to be told about their son’s HIV status.⁴⁶ A number of studies have shown that emotional and instrumental forms of social support can help people living with HIV manage HIV-related stigma.⁴⁷

The Internet has become a central medium in the social lives of many adults, including among gay men searching for sexual partners.⁴⁸ Popular dating or cruising Web sites often allow an option for HIV status to be provided and can facilitate negotiation of sexual behavior, including sexual positioning (serosorting) and use of condoms.⁴⁹ However, most studies regarding social networking on Internet Web sites have focused on younger age cohorts. Thus, more research on how older adults utilize the Internet for social support and connection is necessary.

Social networking Web sites are widely used by people living with HIV, including older adults. A 2009 survey of 312 people living with HIV found that 76% of participants “used an online social networking website or features at least once a week.”^50(p900) Facebook was used by 62% of participants, and Poz.com community forums by 28%. The mean age of participants was 43.1 years.⁵⁰ Although older adults may be less likely to use social networking sites than are younger and middle-age adults, elderly adults report some of the fastest rates of growth in usage of social networking sites. The Pew Research Center reported in 2011 that 16% of people aged 74 years and older used social networking sites, up from 4% in 2008.⁵¹

CAREGIVING FOR OLDER ADULTS WITH HIV/AIDS

Many older adults living with HIV/AIDS are disconnected from traditional informal support networks, and rely heavily on formal care providers.⁵² This is especially true of gay men with HIV, many of whom have been rejected by family members. However many people living with HIV, including racial minority women, do rely on informal caregivers. Informal caregivers in the United States report high rates of depression⁵³ and emotional burden related to nondisclosure of the HIV status of the person for whom they care.⁵⁴ Informal caregivers often have less time to parent and to work, causing stress that can correlate with depression and an end to caregiving assistance.⁵⁵

Caregivers of people living with HIV/AIDS often experience “stress proliferation,” a process whereby “stressors … beget stressors.”^56(p223) Primary stressors, such as the physical and emotional burden of providing caregiving assistance, can beget secondary stressors in roles and activities outside caregiving. This can occur as one’s caregiving role grows and becomes perceived as all-consuming. It also occurs when the strains caused by the caregiving role affect the other roles and activities of the caregiver, such as parent, spouse or partner, and employee.⁵⁶ A study of female caregivers of men with HIV (mothers and wives of the men) found that future uncertainty was a key element in the stress proliferation process for both female caregivers and the men living with HIV who were care recipients. It was positively associated with depressive symptomatology for men with HIV, but not for the caregivers.⁴⁷

Caring for older people with HIV/AIDS raises a new set of challenges. The Social Security system and elder care nationwide are already feeling the burden of the first cohort of “baby boomers” to reach retirement, a trend that will increasingly strain resources in subsequent years. Older adults with HIV/AIDS will add to this burden, with additional needs related to medical complications of HIV/AIDS.

Cognitive decline is a pressing concern among caregivers of older adults. HIV and age each can have profound effects on the brain and both appear to be predictors of neuropsychological impairment. In one study from the pre-HAART era, HIV-related dementia was 3 times more prevalent among HIV-positive people older than 75 years than among those younger than 35 years.⁵⁷ After the advent of HAART, cognitive impairment dramatically decreased among those living with the virus. However, research shows that the frequency of HIV-related cognitive impairment is rising as people with HIV live longer.^58,59 The severity of cognitive impairment is associated with poorer quality of life.⁶⁰

HIV-RELATED STIGMA AND RELATED STRESSORS

The impact of stigma on behaviors and self-perceptions of people living with HIV/AIDS is important because those who are stigmatized are less likely to display health-seeking behavior. Stigma can make people less likely to seek an HIV test, less likely to disclose HIV status if they are positive, and more likely to engage in high-risk sexual activities.⁶¹

HIV stigma can affect the quality of life of persons living with HIV. HIV-positive individuals often internalize stigma in feelings of shame, guilt, anger, fear, and self-loathing.⁶² Many experience “social avoidance, the real or perceived loss of friends, and the sense that people are uncomfortable being around them due to their HIV disease.”⁶³ People who experience HIV-related stigma are more likely to experience depressive symptoms, report receiving recent psychiatric care, and report greater HIV-related symptoms.⁶⁴ Internalized HIV stigma contributes to depression, anxiety, and hopelessness.⁶⁵ A study of HIV stigma among older adults with HIV found that 96% reported experiencing HIV stigma itself, and 71% reported experiencing both ageism and HIV stigma. In addition, 56% reported experiencing rejection from service providers, family, friends, church members, and potential sexual partners.⁶² Partners⁶⁶ and other family members⁶⁷ of people living with HIV also experience HIV-related stigma, regardless of their own serostatus. Some women describe a diminished sense of sexual attractiveness following HIV infection; this was true of women infected pre-HAART and those infected after the advent of HAART.⁶⁸ One study found higher rates of certain kinds of stigma in Thailand, where HIV is concentrated among stigmatized populations, than in Zimbabwe, where the epidemic is generalized.⁶⁹

Older HIV-positive adults often experience a “triple stigma” associated with ageism, public misconceptions about HIV/AIDS, and antigay prejudice, which can affect even heterosexuals living with HIV.⁷⁰ Although HIV is not a “gay disease,” it does disproportionately affect gay and bisexual men, both in the United States and globally.⁵ HIV-positive or not, older Americans are hard-hit by a youth- and beauty-obsessed popular culture. Older adults living with HIV/AIDS are vulnerable to ageist stigma.⁷¹ Older gay and bisexual men with HIV/AIDS report significant experiences of ageism and rejection by younger gay men.⁴³

The issue of sexual orientation is central to the discussion of HIV stigma; it is well understood that public opinion about HIV/AIDS in the United States is strongly associated with perceptions and attitudes toward homosexuality. (In many African countries, where prevention messaging is often exclusively heterosexual, this is not the case.) As a result, older adults with HIV/AIDS in the United States can experience discrimination, rejection, prejudice, and stereotyping because of stigma related to their real or perceived sexual orientation. Higher rates of mental disorders in lesbians, gay men, and bisexuals are caused by the “hostile and stressful social environment” caused by antigay “stigma, prejudice, and discrimination.”^72(p674) Gay-related stigma has been shown to diminish positive affect and increase depression among midlife and older gay men.⁷³ Minority stress is caused by external, objective events and conditions, expectations of such events, the internalization of societal attitudes, and concealment of one’s sexual orientation.⁷²

Internalized homonegativity or antigay stigma has been shown to correlate with higher rates of sexual risk behavior. The greater one’s level of internalized homonegativity (using Bell and Weinberg’s 4-item, 7-point Likert scale that includes, “Sometimes I dislike myself for being gay/bisexual/attracted to men”), the less likely one is to be “out” as an MSM, and the more likely one is to engage in unprotected anal intercourse with a serodiscordant partner. Those with high internalized homonegativity also had lower condom self-efficacy and lower levels of sexual comfort.⁷⁴ Anxiety, often connected to experiences of antigay prejudice, correlates with sexual risk behavior, especially among older gay and bisexual men.³⁶

For midlife and older gay men, having a same-sex domestic partner or legally married spouse may increase positive affect and decrease depressive symptoms.⁷³ Therefore, legal equality for same-sex couples through equal access to civil marriage is an important structural change that could have positive mental health benefits for older gay men living with HIV. Mastery has also been shown to moderate the negative effects of stigma on depression among people with HIV.⁷⁵ Because mastery—the degree to which individuals feel in control of their lives⁷⁶—also correlates with better mental health for people living with HIV, promoting mastery for people living with HIV should be an explicit public health goal. Barriers to mastery—be they economic and structural such as unstable housing, or individual, such as substance abuse—must be addressed by case managers and providers.

STEREOTYPES AND SEXUAL HEALTH EDUCATION

The stigma surrounding sexual orientation is compounded by stereotypes and misconceptions of elder sexuality. Many people remain sexually active well into old age, despite prevailing assumptions to the contrary. However, stereotypes that older adults are not sexually active limit sexual health education from reaching older populations. Health care providers tend not to assess older patients for sexual health–related risks, regardless of sexual orientation and gender. A national study revealed that adults aged 50 years and older at risk for HIV were 80% less likely to be tested for HIV than were younger people.⁷⁷

Such lack of sexual health knowledge inevitably translates into greater levels of high-risk behaviors and practices within the older adult population. For example, lower rates of condom use among older adults may be linked to lack of knowledge about HIV transmission and the effectiveness of condoms in preventing HIV and other sexually transmitted infections. The prevalence of erectile dysfunction, a common issue for older men, may also make effective use of a condom more difficult. The increasing gender imbalance of men to women within older populations—with women progressively outnumbering men because of greater longevity, thus increasing male bargaining power in heterosexual sexual intercourse—may also affect risk behavior because women are less able to negotiate condom usage during intercourse.⁷⁸ This is particularly troubling in light of the fact that older women (more specifically, postmenopausal women) have an increased biological risk of HIV infection and other sexually transmitted infections because of hypoestrogenism and the resulting vaginal dryness that occurs with aging.⁷⁹ The CDC estimates that 11% of new infections in the United States from 2006 to 2009 occurred among people aged 50 years and older.⁵

SENIOR SERVICES, HOUSING, AND INCOME SUPPORT

With more than half of those living with HIV in the United States identifying as gay or bisexual men,⁸⁰ cultural competency in meeting the needs of gay people in elder care is critical. The lack of training available for medical and other service providers in meeting the unique needs of HIV-positive older adults, including older HIV-positive gay men, is an issue that requires immediate attention. Gay elderly persons in nursing homes and assisted living facilities are often presumed heterosexual and feel it necessary to hide their sexual orientation from staff and other residents.⁸¹ This is problematic as evidence shows that long-term relationships with same-sex partners are often devalued, and those who are found to be gay often experience discrimination, abuse, and neglect by staff.⁸² Many gay and lesbian elderly persons fear rejection or neglect by health care providers, including personal care aides, as well as other residents of long-term care facilities and nursing homes.⁸³ Although research on HIV-positive older persons in congregate living facilities is limited, evidence suggests that stigma persists among other residents, as well as staff charged with the care and well-being of residents.

Because of limited resources and social support for older adults with HIV/AIDS, stable housing can be problematic to secure or maintain. Lack of affordable housing is a critical problem facing a growing number of people living with HIV/AIDS. Job loss because of discrimination or because of the fatigue and periodic hospitalization caused by HIV-related illnesses, and the high costs of health care contribute to housing instability and higher risk of homelessness among HIV-positive individuals. The homeless population is estimated to have an HIV prevalence at least 3 times higher—3.4% versus 1%—than the general population,⁸⁴ with even higher rates among subpopulations.⁸⁵ AIDS Housing of Washington surveyed nearly 12 000 people living with HIV/AIDS and found that 40% of participants reported having been homeless at least once in the past.⁸⁴ HIV/AIDS housing experts estimate that over the course of their illness, about half of all HIV-positive people will need some form of housing assistance.⁸⁶ Several studies have shown that residential instability among those with HIV/AIDS is strongly linked to inadequate or inappropriate use of health care services, lower likelihood of treatment adherence, and poorer health outcomes.^87,88

HIV-related discrimination can occur in housing, including long-term care. A 75-year-old former university provost was ejected from an Arkansas assisted living facility in 2009 because of his HIV status, in violation of the Americans with Disabilities Act, the Fair Housing Act, and analogous state nondiscrimination laws.⁸⁹ HIV-related discrimination is connected to stigma and misperceptions about how HIV is transmitted. A 2009 Kaiser Family Foundation survey found that more than one third of Americans believed that HIV could be transmitted by sharing a drinking glass, touching a toilet seat, or sharing a swimming pool with an HIV-positive person.⁹⁰ Older Americans are more likely than members of younger age cohorts to hold inaccurate beliefs about the casual transmission of HIV.⁹⁰ Older Americans are also more likely to hold antigay views than are younger age cohorts.⁹¹ Fear of HIV-related stigma and discrimination undermines public health. President Obama’s National HIV/AIDS Strategy warns that it “causes some Americans to avoid learning their HIV status, disclosing their status, or accessing medical care.”⁹² Medicare, Medicaid and Social Security provide critical support to thousands of people living with HIV in the United States. At least 10% of all people living with HIV in the United States, or 120 000 people, are Medicare beneficiaries.⁹³ People living with HIV qualify for Medicare on the basis of age (most US seniors are on Medicare) or because they have received Social Security Disability Insurance for at least 2 years, after which 93% go on to qualify for Medicare.⁹⁴ With the expansion of Medicare into prescription drug coverage (Medicare Part D), Medicare spending on people with HIV now surpasses Medicaid spending on people with HIV.⁹⁴

Many people with HIV receive Medicaid, a means-tested health insurance program for the poor and disabled. Many seniors on Medicare also qualify for Medicaid and use it to pay for services that Medicare does not cover, such as outpatient prescription medications and long-term care; it also assists with the costs of Medicare and coinsurance premiums.⁹⁵ Until the Affordable Care Act (ACA), childless adults could not qualify for Medicaid unless they were disabled. This meant that HIV-positive individuals had to have an AIDS diagnosis to qualify for Medicaid. The Medicaid expansion to individuals who earn up to 133% of the poverty level, a key component of the ACA, will change this starting in 2014. However, the June 2012 US Supreme Court ruling struck down the mandatory expansion of Medicaid.⁹⁶ The Supreme Court upheld the federal government’s ability to promote expanded Medicaid coverage in the states through expanded federal funding (an incentive to states to participate), but not the ACA’s provision that would cut all federal Medicaid funding to states that do not comply (a penalty the federal government sought to impose upon states for not participating in the Medicaid expansion). About half of the 30 million people newly able to access health coverage under the ACA would be covered under the Medicaid expansion, including low-income adults who are not disabled and who do not have dependent children.⁹⁷ This expansion would benefit many people living with HIV, including individuals in their 50s and early 60s who are not yet age eligible for Medicare, as well as millions of other low-income Americans.

THE WAY FORWARD

As the number of HIV-positive people aged 50 years and older increases in the United States, it is necessary to take appropriate measures to ensure that the needs of this diverse population are met. Providers must recognize the high incidence of comorbidities, and the long-term effects of HAART. The social context in which older adults with HIV/AIDS live, including the damaging effects of stigma on their physical and emotional well-being, must also be considered in improving care. Furthermore, increased training for the geriatric care workforce is essential to promote and maintain the long-term health of this population.

Changes in policy could dramatically improve health outcomes for HIV-positive older adults by increasing access to treatment and support. A collaborative effort involving multiple agencies and levels of government is needed to effectively address the complexities of the burgeoning population of HIV-positive older adults.

We put forth the following policy recommendations to improve the well-being, and reduce the negative health outcomes, of older adults with HIV:

The CDC should fund social marketing campaigns that address the intersection of stigma related to HIV, aging, and homosexuality. These should target the general public, disproportionately affected communities such as African Americans, and health care providers to encourage them to ask all patients about sexual orientation, gender identity, and sexual behavior. Given the greater prevalence of antigay views⁹¹ and misinformation about casual transmission of HIV among older adults, campaigns should target older adults. Erroneous information about how HIV is transmitted should be debunked. Content could promote the healthy sexual lives of older adults, and social acceptance of gay men and transgender women while reinforcing the fact that heterosexuals are also at risk for HIV. President Obama’s National HIV/AIDS Strategy prioritizes improving treatment outcomes as 1 of 3 key goals. It also prioritizes reducing HIV stigma. Given stigma’s association with depression and treatment nonadherence, reducing HIV stigma is essential to the success of the National HIV/AIDS Strategy.

The CDC should fund the development, tailoring, and targeting of HIV prevention interventions for older adults, including gay and bisexual men, heterosexual women, and African Americans.

Laws criminalizing HIV and the nondisclosure of one’s HIV status also reinforce HIV-related stigma, prejudice, and discrimination. Currently 34 states in the United States have laws punishing people for exposing another person to HIV, usually through nondisclosure of status, even if transmission does not occur. Those convicted often have to register as sex offenders for the rest of their lives. A bill introduced by Congresswoman Barbara Lee (D-CA) in 2011, the REPEAL HIV Criminalization Act, would review and repeal such laws.⁹⁸

The CDC should improve epidemiological surveillance systems and data collection on older adults delineated by age and risk category to better inform HIV preventionists and geriatric health providers with information on the proportion of older HIV-positive adults who contract HIV through homosexual sexual intercourse, heterosexual sexual intercourse, and injection drug use. It should also analyze HIV prevalence among the young-old, old-old, and oldest-old.

The National Institutes of Health should fund large-scale, national, longitudinal studies that investigate how antiretroviral medications and HIV disease interact with aging bodies, and how they interact with treatments for comorbidities such as high-cholesterol medication; to what extent normal aging processes result from viral infection and immune activation; and the incidence and determinants of cognitive decline in aging HIV-positive individuals.

Research should be conducted to study the experiences of HIV-positive elderly persons, older gay or bisexual men, and older transgender women in congregate living facilities to inform services to best meet their needs.

Health care and elder service providers should be trained in the unique needs of older adults with HIV, including cultural competence, ongoing technical assistance, and capacity building assistance to support integration of new information critical to improving elder care.

Health care providers should proactively assess older patients for sexual health risks and sexual behavior, while ensuring confidentiality.

Older adults living with HIV should be routinely screened and, if necessary, treated for depression and other mental health issues related to internalized stigma.

The Older Americans Act, overdue for reauthorization, should broaden the definition of older adults with “greatest social need” to include older adults with HIV and LGBT elderly persons. (The act funds elder services, workforce training, and research.)

Partner recognition of same-sex relations, especially legal recognition of same-sex marriage, has been shown to provide resiliency against depression among midlife and older gay men.⁷³ Civil marriage should be available to same-sex couples, and married same-sex couples should receive equal treatment under the full range of state and federal public policies.

Many states that have rejected the Medicaid expansion under the ACA, and even federal funding to support it, for ideological reasons are also home to some of the most striking health disparities, particularly for racial/ethnic minorities and poor people. States should support the Medicaid expansion, as it is a good financial deal for them. Under the ACA, the federal government first contributes 100% of the cost of the expansion, then 95%, and then 90%.⁹⁹ If the ACA is to be successfully implemented and health care access for low-income people expanded, including for low-income older adults living with HIV, a meaningful expansion of Medicaid must occur in states across the country.

CONCLUSIONS

The life-saving medications that transformed the HIV epidemic nearly 2 decades ago have dramatically increased life expectancy for people living with HIV. This welcome advance has also created new challenges. Older people living with HIV experience a number of comorbidities that should be addressed, when possible, through prevention, screening, and early detection. The life course perspective offers a useful framework for understanding HIV-related life events and transitions; “young-old” and older age cohorts, particularly gay men, have varying experiences with social homophobia and family rejection that can affect caregiving needs. Social networking Web sites can help reduce the social isolation that is common among older people living with HIV. Stigma related to HIV and homosexuality interacts with age-related stigma to exacerbate stress and affect the quality of life and mental health of HIV-positive elderly persons. It is essential that senior service providers and staff of congregate living facilities be trained in HIV and LGBT issues so that they can provide nondiscriminatory and culturally competent care. Policy frameworks could do a better job meeting the needs of HIV-positive older persons. The Older Americans Act should explicitly acknowledge the greater social needs of HIV-positive and LGBT elderly persons to ensure that the needs of HIV-positive older persons, including the half of them who are gay or bisexual men, are met.