Stigma, Ignorance Persist After 2 Decades of AIDS

Twenty years ago this month, the first report was published by the Centers for Disease Control describing five cases of an unusual pneumonia associated with immune deficiency in three Los Angeles hospitals. These were the first reported cases of AIDS. That is how it all started in the U.S.

Through careful tracking, links were established among the cases, and similar cases and deaths in New York and San Francisco. It appeared to be a syndrome found only in gay men and spread by sexual contact.

This “epidemic of the century” is firmly entrenched in this new century. We have endured 20 years of death, suffering, stigma, ignorance, fear and discrimination.

In 1981, I worked as a nurse at UCI Medical Center in Orange and remember the fear of caring for the AIDS patients, plumbers refusing to work in a patient’s room, and even medical professionals making jokes and hiding their fear behind their humor. I was not exempt from that fear. In 1980, I received three units of blood during surgery.

When a test for the antibodies to this disease became available, I mustered my courage and took it.

I was one of the fortunate because my test was negative. I still remember the fear.

Over time we watched Rock Hudson, Arthur Ashe, Freddie Mercury, Ryan White and others die of AIDS. We stood in amazement when Magic Johnson told us he was infected with the virus. We began to understand how the virus was transmitted. We developed medication combinations labeled “cocktails” that are difficult to take and very expensive. People began living with HIV instead of dying of AIDS. With the drugs, however, came failures, side effects and drug resistance.

In Orange County, we have worked together to build private-public partnerships. Nonprofits work with the county Health Care Agency to provide care, treatment, mental health and benefits counseling, and programs to meet basic needs such as housing, transportation and food. Prevention programs are designed to be sensitive to a client’s fear of stigma, disclosure of HIV status to family, friends and workplace.

In the 1990s we saw a change in the face of HIV/AIDS as more people of color, women and youth became infected. Almost 6,000 cases of AIDS and more than 3,000 deaths have been reported in Orange County since 1981. No accurate figures are available for the number of HIV-infected individuals, but estimates are 6,700.

What do the next 20 years have in store? What can we do locally, statewide, nationally and globally?

A recent study of AIDS-related stigma found that 40% of the public erroneously believes that HIV can be spread through casual contact, sharing utensils, coughing and sneezing. Despite demographic changes in the HIV-infected population during the last decade, the public still generally associates AIDS with gay and bisexual men. AIDS stigma and ignorance persist in the United States. We need to educate and re-educate the public.

There is still no cure or vaccine against HIV. With the advent of the drug regimens, we are seeing prevention practices taken less seriously and an increase in HIV and other sexually transmitted diseases in Orange County, including a recent increase in the number of cases of syphilis. We must make sure that sexually active people know how to protect themselves. We need prevention campaigns for both the infected and the uninfected.

Young adults are the fastest-growing population for HIV infection. Parents and schools should encourage abstinence but not ignore the fact that about 80% of teenagers are sexually active before age 18. We must provide them life-saving information.

Alcohol and drug use alters perception and behaviors. Intravenous drug use is a significant risk factor for HIV transmission. Access to sterile needles and syringes has shown to decrease the risk of transmission of HIV and hepatitis B and C.

Education, prevention and needle exchanges are a few ways to decrease the spread of this devastating disease. Compassion for the infected, and funding for health care, medications and meeting basic survival needs are essential.

Not long after I received my negative test, I found out my son was positive. I would have given anything to trade places with him. He is one of the miracles. Twenty years later he is alive and quite well, struggling with a difficult drug regimen and suffering side effects.

Twenty years, and who could have predicted from those first five cases that we would now see more than 35 million people infected worldwide and an estimated death toll of 22 million? Let’s work together to make a difference, here in Orange County and throughout the world.

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Pearl Jemison-Smith is a retired nurse and founding board member of AIDS Services Foundation and AIDS Walk Orange County.