With increased access of the HIV/AIDS positive to relatively effective anti-retroviral therapy, the rapid decline that characterized the health trajectory of infected individuals in the early years of the epidemic has been arrested in the developed world, but unfortunately, as the modern attention span is short, this can obscure the fact that there is still no cure for HIV/AIDS, that infections continue to occur, and in fact rise among many populations. Additionally, an overlooked aspect of the development of life-prolonging anti-retroviral treatments for HIV/AIDS is the fact that the demographics of the disease have changed substantially since the beginning of the epidemic, as we are able to ameliorate many of the symptoms, but have failed to eradicate the source disease.
In the United States, more than 600 community-based AIDS service organizations sprang up in the first decade of the HIV/AIDS epidemic. This significant community level response to a health crisis was unprecedented. Community based organizations were the first to provide HIV/AIDS public awareness campaigns and interventions due to prevalent political attitudes and the highly stigmatized nature of the disease, which made government action in the early years difficult. The community based organizations have been in this fight for over thirty years now and are consequently aging themselves (in terms of workforce, infrastructure, and mission drift) , as are those that have been infected and affected by HIV/AIDS. Our organizations are aging, as are the populations we serve. First we must recognize this fact, and second we must not assume that yesterday’s strategies, techniques, philosophies, and values are appropriate today, or as aptly observed by American publishing legend Katharine Graham, “No one can avoid aging, but aging productively is something else”. This is as true for individuals as it is for organizations.
More often than not, the symbolic images we associate with HIV/AIDS are rooted in the MTV generation (a moving target) and group level discussions that are often held with younger individuals. Did you know that people age 50 and older represent almost one-fourth of all those with HIV/AIDS in the U.S? Medications have dramatically increased lifespans for people living with HIV. It is estimated that, by 2015, over half those living with HIV in the United States will be over age 50. Developing countries have limited case reporting systems so we cannot be sure of global demographic shifts, but in the United States, HIV-positive cases have climbed from 20% to 25% from 2003 to 2006 in the elderly demographic group. This is because doctors are finding HIV more often than ever before in older people and because improved treatments are helping people with the disease live longer. With the advent of HAART, the life expectancy of individuals with HIV infection has been dramatically elongated. Recently published data indicated that the average life expectancy for a patient at the age of 20 is 43 years (Simone & Applebaum, 2008). The World Bank reports that the average life expectancy for the entire United States population is 78 years.
Thirty-one years have elapsed since the initial identification of HIV/AIDS and we still strive (as led by Secretary of State Hilary Clinton, at a global level) for an AIDS -free generation. What does that mean? Our primary desire, and overarching goals are to prevent new infections from occurring and to stop HIV-positive people from developing AIDS. For those organizations and individuals that have participated in this global public health fight, an end to AIDS cannot come soon enough. What “AIDS-free generation” means is that there is emerging a renewed emphasis on prevention – prevention not just through raising public awareness, but by providing tools such as condoms, PReP, circumcision, medications to pregnant women and treatment, particularly through early detection and treatment. These fundamental necessities and advances are part of the enhanced HIV/AIDS prevention and treatment toolbox. We must marshal our resources intelligently, implement our tools effectively, and continuously assess the populations we serve if we are ever to truly reach an AIDS-free generation.
Of course, we must not get ahead of ourselves. While access to new treatments has expanded, is it enough to achieve a decline in infection rates in and of itself? The obvious answer is that no matter whether we’ve developed effective treatments, if we hope to make HIV/AIDS a specter of the past, we need to both treat those already infected, as well as continue to prevent new infections. Our world is increasingly interconnected, therefore global inequities in access should also be a concern, as populations move and migrate. We will never truly be free of HIV/AIDS, unless we are able to eradicate its ravages globally.
Although (1) prevention and (2) early diagnosis plus treatment are two cornerstones in combating HIV infection, prevention campaigns have traditionally targeted the younger demographics, as in the initial stage of the epidemic, the younger generation was differentially impacted, which is rapidly changing. I do want to remind us all, however, that as we work towards the ideal of an AIDS-free generation with an emphasis on the prevention of new infections, we must not forget the needs of those that are already HIV-positive and aging. The Centers for Disease Control and Prevention (CDC) estimates that 11% of the roughly 50,000 HIV infections that occur annually (measured in 2009) in the United States are among persons aged 50 years or older and that. In high prevalence areas, HIV infection has been present in up to 5% of persons who died older than 60 years. These numbers are not to be taken lightly.
Many factors contribute to the increasing risk of infection in older people. Below, I list some of the top concerns:
- Older people know less about HIV/AIDS and STDs than younger age groups because the elderly have been neglected by those responsible for education and prevention messages.
- Older people are less likely than younger people to talk about their sex lives or drug use with their doctors, and doctors don’t tend to ask their older patients about sex or drug use.
- Older people often mistake the symptoms of HIV/AIDS for the aches and pains of normal aging, so they are less likely to get tested.
- Many older people do not consider themselves to be at risk.
- Although sexual activity declines with age, the majority of Americans aged 57 to 65 years and a substantial fraction aged 66 years or older remain sexually active, including persons who are HIV-infected
- Medical care providers are generally poor at routinely collecting and recording sexual histories of their patients, particularly for patients aged 50 years or older.
- Despite sexual activity and risk for HIV infection, few older Americans use condoms to protect themselves from infection during sexual intercourse. According to the 2008 National Survey of Sexual Health and Behavior, among all persons aged 50 years or older, condoms were not used during most recent intercourse with 91.5% of casual partners. Yes, the elderly have causal sex partners!
As a consequence of the factors listed above, older HIV positive individuals are likely to present with advanced HIV disease, mainly due to inadequate risk assessment by doctors and late diagnosis, generally resulting in poorer outcomes. Furthermore, older Americans are at greater risk for diabetes, hypertension, and cancer, as well as decreased bone density. Treatment considerations for the elderly are different. It is well accepted that general immune status decreases with age, however elderly HIV-infected individuals are subject to poorer immunological responses and increased clinical risk by HAART. It has been found that HIV infection, through a continuous process of both direct and indirect immune activation, might accelerate the aging or decay of the immune system.
Sadly, to compound the situation further for HIV positive elderly individuals, a signiﬁcant fraction of HIV-infected patients die from violent and accidental causes related to drug abuse and poor mental health. Such a situation highlights the need to link HIV positive individuals to supportive social services such as mental health, counseling, substance abuse, and case-management. Older adults living with HIV may lack community support, typically lack siblings or parents to care for them, and may have experienced multiple AIDS-related losses within their social networks. The stigma many face may be further exasperated by their living situations (group homes, alone, with judgmental family members) leading perhaps to depression and even further compromised immune function.
Considerations going forward, as we strive for an AIDS-Free generation include:
- Health care providers need education about high risk behaviors among older adults, become skilled at identifying symptoms of HIV/AIDS, and stay vigilant about screening for HIV/AIDS in older adults.
- Health care providers must acknowledge that older adults are as at risk for acquiring HIV/AIDS as younger adults.
- Screening for high risk behaviors should be a routine part of every health care visit.
- Elderly patients may require focused clinical care that extends beyond HIV treatment.
- Persons who are newly diagnosed with HIV infection, including those aged 50 years and older should be offered HIV antiretroviral therapy regardless of CD4 count.
- Anti-stigma campaigns must target the elderly and their loved ones.
- Mental health care needs to be prioritized.
- Community based organizations, that are also aging, need to be provided with capacity building assistance to enhance their services to the elderly. This will include integration of services such as mental health, housing and support groups.
We have faced the HIV/AIDS epidemic for more than 30 years, and compared to the early years of community efforts against the disease, there are now more individuals infected over 50 years of age than under 25 years of age. In contrast to the steady overall decline nationally in the total number of persons diagnosed with AIDS following the development of HAART in the mid-1990s, the percentage of persons ever diagnosed with AIDS who are aged 50 years and older has steadily increased, from 5.6% in 1997 to 38.5% in 2009. Furthermore, in western countries, the number of elderly individuals is dramatically increasing, whereas the birth rate is decreasing. By combining close surveillance of HIV/AIDS epidemiological trends and proper treatment protocols, we might be able to control and improve life quality in the long-term treatment of this chronic viral disease in the elderly. At the same time, let us not forget those community based organizations that have been in this fight–many laboring tirelessly decade after decade. They need your support as well for an enhanced approach to addressing the emerging population of older HIV positive individuals