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Issues for Elderly Persons Living with HIV/AIDS

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Susan L. Waysdorf,

excerpted from: Susan L. Waysdorf, The Aging of the Aids Epidemic: Emerging Legal and Public Health Issues for Elderly Persons Living with Hiv/aids , 10 Elder Law Journal 47-89, 48-54 (2002) (211 Footnotes)

As the AIDS epidemic has aged, so have the people it infects and affects. Striking first one population and then another, AIDS has targeted a range of vulnerable populations over the last two decades. What was once a predominately gay male disease has become an epidemic increasingly and disproportionately affecting people of color, particularly African Americans, and also women, children, and their families. A great majority of those affected by the disease live in poverty and without access to adequate and affordable health care and other resources.

While the world's attention has necessarily shifted to the global AIDS pandemic, which is devastating entire populations in sub-Saharan Africa and also parts of Asia, HIV/AIDS continues to quietly target groups in this country which remain virtually defenseless against the disease. In the United States, elderly people of all races are experiencing a proportionately greater rate of new AIDS cases than any other age groups. Little attention has been given to the epidemic's impact on the older adult, or geriatric population. This article seeks to drive a wedge through this wall of silence by addressing the public health, psycho-social, legislative, and legal issues associated with HIV/AIDS in aging populations.

For the first decade of the AIDS epidemic, the proportion of new AIDS cases in persons fifty years of age and older was reported as approximatelyten percent on average of all new AIDS cases reported annually. However, that rate steadily increased during the 1990s. Some experts have reported that as of March 1990, AIDS cases in the age group of persons over fifty years of age already represented 12.5% of the total number of cases in the United States. The federal government reported that from 1991 through at least 1996, on average, eleven percent of persons with AIDS over the age of thirteen were fifty years of age or older. Other reports indicate that by 1998, elderly persons comprised 12.7% of all new AIDS cases, and that by 1999 that rate had increased to 13.4%.

However, even these numbers do not tell the entire story because they represent cases of AIDS disease, rather than incidence of HIV infection, which is the precondition to symptomatic AIDS illness. Seniors are less likely than others to get tested for HIV. Therefore, the problem of HIV and AIDS in the elderly actually may be much larger than the raw data on AIDS cases suggests. Furthermore, between 1991 and 1996 there was a twenty-two percent rise in new AIDS cases in Americans over age fifty. This was actually a greater proportionate increase than the increase among persons aged thirteen to twenty-nine years. The greatest rise in geriatric AIDS cases has been among elderly women, and among elderly persons of color, particularly African Americans.

Although the phenomenon of geriatric AIDS was first noted by medical researchers over fifteen years ago, those responsible for the well-being of elderly persons--doctors, social workers, and public health and other governmental agencies--have only just begun to recognize the impact of the disease on our nation's senior citizens. This societal neglect has occurred despite the fact that incidence of HIV infection among the elderly has continued to increase at a steady and alarming pace. The reality of geriatric HIV/AIDS raises new social, psycho-social, economic, medical, and legal issues for both those who are infected and family members who are affected.

With the epidemic's successive attack on each population, new legal issues and public policy issues have emerged. As a result, AIDS law as a body of legal theory and practice has evolved with the expression of each affected population's legal needs. With the increased prevalence of AIDS among the elderly, once again the legal landscape of AIDS law is changing. The legal realities faced by the HIV-infected elderly population, as they face new legal challenges, barriers, and problems, have expanded the parameters of AIDS, health, and elder law.

This article discusses the social impact, public policy challenges, and legal issues presented by the graying of the AIDS epidemic. Part II of this article opens with an analysis of the demographic and social factors that have led to increased rates of HIV/AIDS cases among America's elderly. This section includes discussion of the impact of race, gender, and socioeconomic status on disease diagnosis, treatment, and progression, as well as the modes of transmission among the elderly. In addition, this section of the article explores various public-health initiatives, including prevention and educational programs which must be developed and undertaken now in order to curtail the spread of AIDS within this particularly vulnerable, fragile, and always growing segment of the population. The specific medical, psychological, and social needs of elderly afflicted with HIV/AIDS and the particular ways in which the disease affects older persons in our society, as well as related public policy issues are also addressed in this section.

Part III of this article outlines the legal challenges and problems facing elderly people living with HIV/AIDS. Litigation and other advocacy approaches to meeting these legal needs are explored. In addition, recent legislative proposals to reform geriatric health care, particularly Medicare, the nation's largest health insurance program for senior citizens, are discussed. During the last several years, national health care reform, the global AIDS pandemic, biotechnology growth and regulation, and the reform and survival of Medicare have become some of the most hotly debated issues in Congress, among public policy advocates, and within the body politic. For example, in the first session of the 107th Congress, dozens of bills have been introduced which are aimed at fixing the nation's health care system, providing health care for the poor and elderly, reforming Medicare, expanding or shrinking Medicaid, and responding to the global AIDS pandemic.

Although many significant health care reform bills have been proposed in Congress, this article's discussion of legislative reform focuses on two particular bills--the Medicare Wellness Act of 2001 and the Medicare Chronic Care Improvement Act of 2001. These two proposed laws are representative of the numerous Medicare and health care reform bills that have been introduced in the 107th Congress. The paradigm framework these two bills offer makes them particularly useful in analyzing the current Medicare reform process and in shedding light on the legislative and political process that is now ensuing in Congress. What is certain is that the final disposition of the bills will affect geriatric health care in this country for many years to come, including those elderly who are HIV-positive.

The reality that the percent of elders infected with HIV/AIDS is growing presents issues for those both inside and outside of the legal community. It presents significant challenges not only to attorneys, but also to legislators, public and health policy advocates, and to society as a whole. The post-war World War II "baby boom" generation is now entering middle-age. In the early part of the new millennium, this group will swell the ranks of the older population. Many "baby boomers" entering the elder population will bring the HIV disease with them, having lived with it for years, as a chronic rather than an imminently terminal disease. How the baby boom generation deals with the threat and the impact of HIV infection in today's elderly population tests society's obligation to the courageous seniors who are confronting not only the challenges of aging, but also the stigma and ravages of the epidemic.

Elderly persons have the right, and should have the opportunities, to remain productive, secure, and in good health. Aging is a multidimensional process that is not only informed by biological aging, but also by changes in needs and wants, family roles, productivity, image, and in some cultures, by changes in respect, wisdom, and sagacity based on experience. Aging is also a process of transitions, and health is perhaps the most significant transition issue for older persons. This transition process often is severely compromised by catastrophic, terminal, and chronic disease, disability, loss of mental functioning, as well as by poverty, social isolation, and lack of health care.

Realistically, AIDS is not the most widespread disease among the elderly, nor the greatest cause of death or disability in this age group. Nonetheless, AIDS among younger populations has served to spotlight and to bring together some of the most compelling and troubling social issues of our time; and the same is true for elderly persons living with the disease. AIDS in this country has merged a health crisis with arights struggle in an unprecedented way; now this development is unfolding in the fight against global AIDS. As the demographics of the disease have changed, HIV/AIDS has become increasingly intertwined with already existing social problems such as poverty, drug abuse, racism, and inadequate health care. This is in part due to the stigma AIDS carries, and in part due to the impact that socioeconomic, racial, and gender inequities and biases have had on the disease's disproportionate targeting of specially vulnerable populations.

As a result, AIDS has had a way of making its affected populations invisible and at the same time, stigmatized. This is particularly true for elderly persons with HIV/AIDS. At times other diseases and disabilities have resulted in similar treatment of particular age groups and populations. For example, in the not-too-distant past, Alzheimer's disease was a taboo subject. As with geriatric AIDS, little was known medically or scientifically about Alzheimer's. Scant attention and relatively limited support was given to patients and their families. As advocates for Alzheimer's patients began to organize and educate, public sentiment, medical knowledge of, and interest in the disease began to change.

One goal of a humane and benevolent society should be to ensure that all older persons achieve and maintain the optimum health and well-being possible, and attainable with the full support of their families and communities. The segment of the aged population affected and infected by HIV/AIDS must not be left out and forgotten, nor be denied the right to age with dignity, respect, and the highest quality of care. Despite recent important legislative proposals promoting health care reform, geriatric AIDS continues to be an invisible problem, lacking needed recognition. This article is intended to contribute to the process of raising the public and the legal community's awareness of AIDS among the elderly and to encourage advocacy and compassionate care for all our elders, including those with HIV/AIDS.

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Professor Vernellia R. Randall
Institute on Race, Health Care and the Law
The University of Dayton School of Law
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Email: randall@udayton.edu


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