In America, HIV first arrived in 1966, in Haiti,
possibly from Congo. The earliest case of AIDS in America, was of a female baby
born in 1973 who had contracted HIV from her infected mother. In July,1982, the
Journal of Gastroenterology, USA, reported about one of the first patients to have
died of AIDS (presumptive diagnosis) as "Exposure to some substance
(rather than an infectious agent) may eventually lead to immunodeficiency among
a subset of the homosexual male population that shares a particular style of
life.” It was then reported by Marmor et al. thatin New York City, exposure to
amyl nitrite was associated with an increased risk of Kaposi’s sarcoma and
AIDS. There were also speculations about the exposure to inhalant sexual
stimulants, central-nervous-system stimulants, and a variety of other
"street" drugs amongst males belonging to the cluster of cases diagnosed
with Kaposi’s sarcoma and Pneumocystis Carini Pneumonia in Los Angeles and Orange
counties. In short, speculations were rife in the early days in the United
States, with the advent of HIV and increasing association was made with
‘risk-related behaviours’ like street drugs and homosexuality. Since then we
have come a long way, particularly by way of research and HIV-AIDS is not a new
phenomenon anymore.
This article was initiated and motivated by Dr Connie
Chung, PhD in Human Development and Psychology, Harvard University. Dr Chung
has worked with the AIDS project Los Angeles ( APLA) David Geffen Center for
about a year. She discusses with me
about the evolution of the APLA, a major organisation that works with people
with HIV-AIDS in Los Angeles. In doing so, we also discuss about the trends and
other epidemiologic data for HIV-AIDS in the USA, in relation to women.
The APLA had its incept in Oct 1982 when Nancy Cole
Sawaya, Matt Redman, Erwin Munro and Max Drew attended an emergency meeting at
the Los Angeles Gay and Lesbian Community Services centre and it featured a
presentation by a representative from San Francisco’s Kaposi’s Sarcoma
Foundation about Gay Related Immunodeficiency disease ( GRID ), one of the
early names for AIDS. Realizing that funds were needed to educate the community
and prevent the spread of the disease, the founders enlisted the help of many
friends (who became many of APLA's early volunteers) and held a Christmas
benefit. The party raised more than $7,000 that was the seed money. By then, recognizing
that AIDS was not just a gay disease, the founders named the organization the AIDS
Project Los Angeles. The first Board of Directors was elected on January 14,
1983 and 2012 is its 29th year. In early 1983, there were only five clients. At
the end of 1983, there were 100, and by the middle of 1984 there were 200. APLA's
first major educational campaign was launched two years later, in 1985 (The
now-famous "LA Cares" ads). APLA's first client service began when
early volunteers visited patients at their hospital beds. This was the year
when they also distributed their first leaflet on HIV-AIDS and advertised about
safe sex. They featured a very sweet and motherly character who taught her
"boys" about safer sex.
The adverts comprised of billboards, public
service announcements and print advertising; the campaign included graphic
safer sex guides for gay men titled "Can We Talk?" and "Mother's
Handy Sex Guide." For a wider audience, APLA and the Center ran a
"Southern California Cares" campaign, with the theme "Fight the
Fear with the Facts." APLA's educational publications began with Living
With AIDS: A Self-Care Manual, which was first published in 1985. In August
1985, APLA coordinated testimony before the Los Angeles City Council on
discrimination against people with AIDS, and Los Angeles became the first city
in the nation to bar such discrimination. In 1986, APLA established a
Government Affairs Division. Its goals were to increase state and local
resources for AIDS prevention, education and care, as well as to promote fair
and humane HIV/AIDS legislation. In 1990, community advocates worked alongside
legislators in developing the framework of The Ryan White CARE Act. Many early
fundraising events were held in gay bars and discos as the gay and lesbian
community mobilized to fight AIDS. An early fundraiser at Studio One in March
1984, featuring Joan Rivers, raised $45,000. APLA held the world's first AIDS
Walk Los Angeles event on July 28, 1985. The organizers of AIDS Walk Los
Angeles hoped to raise $100,000 that first year, but instead a tide of more
than 4,500 walkers raised $673,000. AIDS Walk Los Angeles has since raised over
$69 million. Another of APLA’s first fundraisers, Commitment to Life, raised
millions for the agency, largely due to the persistence of the late APLA
supporter Elizabeth Taylor. In 2003, the agency launched The Red Circle
Project, an HIV prevention program targeting the Native American / Alaska
Native population throughout L.A. County.
By the end of 2005, APLA had begun
its first international partnership, a project with India-based AIDS service
provider YRG CARE. APLA subsequently continued to expand its international
efforts with an HIV prevention program for gay men in China; prevention,
research, training, and advocacy efforts in Latin America; and a nutrition
initiative in South Africa. In 2006, APLA became the Secretariat to the Global
Forum on MSM & HIV (MSMGF). Guided by a Steering Committee of 20 members
from 17 countries, it works to promote MSM health and human rights worldwide
through advocacy, information exchange, knowledge production, networking, and
capacity building. APLA also has the Necessities of Life Program (NOLP) Food
Pantries which begun as a $35-a-week food voucher program in 1986 for people
with HIV/AIDS. Aids Project Los Angeles opened the nation’s first dental
facility dedicated to serving people with HIV/AIDS in March 1985. The APLA Case
Management Services offers a range of services including Registration,
Assessment, Service Planning, Referrals, Transportation and Deaf Services.
Transportation offers free taxi rides to and from medical appointments and
assists with public transportation needs. The APLA also has the Crystal Methamphetamine
program that aims to reduce the risk of HIV infection and the social isolation
caused by the use of the drug. These are only some of the services provided by
the APLA amongst several others. Dr Chung then explained to me how she felt
that though HIV-AIDS is found across all sections of society and gender, from
experience she felt the impact is significantly more for women. She discussed
with me details of epidemiologic data and a more recent report on the
significant impact of HIV/AIDS on women by the Kaiser Family Foundation. Here
are some of the available data that steer us towards developing an opinion on
the magnitude of the situation in the developed nation of the United States and
then decide for ourselves how lesser developed nations, particularly in those
where gender discrimination is the mainstay, could be struggling to cope with
the multi-faceted dilemmas that the disease presents.
In the USA, women represented 8% of newly diagnosed
AIDS in 1985, 20% in 1995 and 27% in 2000. The incidence of HIV among women
gradually rose until the late 1980s, then declined slightly and has remained
fairly stable since. Today there are 1.1 million people with HIV-AIDS in the
USA and of these, 280,000 are women. In 2009, there were 11,200 new HIV
infections and 8,422 new AIDS diagnoses amongst women. Women are most likely to
be infected through heterosexual sex, followed by injection - drug use. This
pattern is consistent across all racial and ethnic groups. Mother-to-child
transmission of HIV in the U.S. has decreased dramatically since its peak in
1992 due to the use of antiretroviral therapy (ART), which significantly
reduces the risk of transmission from a woman to her baby (to less than 2%). A
third of those affected by AIDS in the USA are from the Virgin Islands,
Maryland, New Jersey and Connecticut and they are female. New York has the
highest number of women living with AIDS in the North-east and the South of the
USA. The District of Columbia however tops the list with 79.9 per 100,000 ie
over 12 times the national rate for women, in the whole of the USA. ( Women and
HIV/AIDS in the United States, The KFF foundation, Dec 2012; www.kff.org).
The issues that flag
women as more at risk and increase our concerns, according to Dr Chung, are the
studies that indicate that the women afflicted with HIV/AIDS have a
significantly reduced capacity to earn and their income is less than their male
counterparts by a wide margin. Women with HIV/AIDS had disproportionately low
incomes compared to men in these studies. Figures indicate at less than $10,000
annually. These women are also unable to share in or contribute proportionately
to their family responsibilities by view of their ill health bearing in mind
that most of these women would be at once both bread-winners and home-makers.
Most women( 76%) with HIV/AIDS also have children under the age of 18 that
complicate their ability to manage their households. This places families and
children at risk. A third area of concern is their access to the health care
system. In comparison to men, studies indicate that women are less likely to
receive health care support including ARV treatment and combination drug
treatment.
HIV/AIDS is an
illness, a tormentor and bearer of ill fortune amongst those unfortunate enough
to contract it. The antidote lies not in cleaning up after, but in the
prevention. If the situation causes such grave concern in a developed nation as
the United States, I shudder to think what the situation is like in many other
countries. With the above mention and description of an organization as the
APLA that works round the clock to redeem afflicted individuals of their fate
and a warm thanks and gratefulness to Dr Chung for being ever so kind as to
sharing with me relevant information and her views, I conclude my article with
the thought that ‘ We can sweep all we can the aftermath but prevention is
always the cure.’ A greater effort is needed everywhere to help prevent such a
calamity.
Dr Anusmita Baruah
.
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