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Demystifying a Disease

By Neelam Gupta

In a historical gathering, the Asian Pacific Islander Wellness Center (A&PIWC) organized the “First National Meeting on HIV/AIDS Prevention in the South Asian Populations in the United States” in Los Angeles, Aug. 24-26. This dynamic, personalized event convened approximately 40 delegates from all over the country, with Asian Pacific Islanders for Human Rights (APIHR) as the local host and funding from the Centers for Disease Control and Prevention.

The conference objective was to create a national plan to improve community access to HIV/AIDS prevention services for people living in the United States with family origins in countries such as India, Pakistan, Nepal, Bangladesh and Sri Lanka. Attendees included leaders and advocates affected by this tragic epidemic who work with diverse groups such as youth, women, gay and bisexual communities.

Unlike other illnesses, HIV/AIDS is looked upon with a great deal of fear and stigma because of myths associated with the disease as well as the people who live with it. Human Immunodeficiency Virus (HIV) affects the immune system. HIV is transmitted through bodily fluids, such as blood, via three primary methods: sexual contact, intravenous drug use, and from a mother to a child during pregnancy.

Due to the reduced ability of the body to protect itself, people who are HIV positive are prone to other infections. Acquired Immune Deficiency Syndrome (AIDS) is diagnosed when several of these opportunistic infections are contracted in the presence of HIV.

While there are efforts being made to curb the spread of this disease on many levels, it is still incurable. The best defense is primary prevention, consisting of strategies such as education, outreach, and support that target the inaccurate beliefs and unsafe behaviors, which place people at risk for HIV infection. For example, some South Asians believe that HIV/AIDS only affects white gay men and hence they are not susceptible to the virus. Along the same lines, issues of sexuality are not generally discussed in some South Asian households. One result may be a lack of information about reproductive health and safe sex practices.

According to the National Minority AIDS Council, HIV/AIDS is a disease of global proportions with 33.4 million people worldwide infected at the end of 1998. On a national level, India has the largest number of HIV infected individuals at 4 million people.

“As the South Asian American population has increased in numbers, so have our needs for HIV/AIDS prevention,” said Javid Syed, Asian and Pacific Islander Wellness Center staff member and coordinator of the national meeting. According to the United States Census 2000, the Indian American community grew by 106 percent to 1.7 million since 1990.

For the first time, national attention was focused on HIV primary prevention among South Asian Americans. A regionally representative advisory committee was established in February 2001 to direct the planning process, with extensive outreach conducted to select committed participants reflecting the ethnic, cultural, religious and geographic diversity of South Asians.

The attendees brought together a vast knowledge of professional and personal experiences. Speakers included Kevin Conare of Action AIDS in Philadelphia, Lina Sheth and Marlon Wallen of Massachusetts Asian AIDS Prevention Projects in Boston, Khurram Hassan of Raksha in Atlanta and myself.

Of all documented South Asian AIDS cases in the United States in 1998, 73 percent were from India, 19 percent were from Pakistan, and 2 percent from Sri Lanka. The majority of cases were found in men, with the most common mode of transmission being men who have sex with men at 72 percent. However, a high proportion of women do not know or will not identify how they acquired HIV, suggesting the deep-rooted shame associated with the disease. When identified, the most common mode of transmission for women is heterosexual contact.

Sheth stressed the importance of creating a safe environment in which extremely sensitive information about difficult topics could be discussed. To put a human face on the issues involved, a panel of South Asians living with HIV and AIDS shared their experiences on how this disease has impacted their lives including challenges for receiving culturally appropriate support and services. One HIV-positive woman shared that she had started an organization to address the special needs of women such as raising children.

Conare, who has worked in the HIV/AIDS field for eight years, commented that he has never seen South Asians assembled in a forum to raise these issues. “The system has no place for people to talk. It is a challenge for our communities to talk as they are still in a silent phase,” he said. He also noted the importance of building capacity within mainstream health and social services to bring together prevention efforts.

Patrick Mangto of APIHR commented on the meeting’s momentum to initiate a national agenda. “We are really starting something for our communities,” he said. The dedication of the participants over the short period of three days resulted in the melding of many years of previous work into a productive plan.

A&PIWC is the oldest and most comprehensive, non-profit HIV/AIDS services organization in North America targeting API communities and may be reached by phone at (415) 292 3400 and via the web at www.apiwellness.org.