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