|
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. |
