Learning to Live with AIDS

by Tracey Porpora

For most of her life, Betty, 45, has been a drug addict. Heroin, cocaine, marijuana, alcohol - you name the drug, she's used it. Like many drug addicts, Betty has resorted to stealing and prostitution to support her habit. She's been in and out of detoxification facilities and psychiatric wards, and has lived for several years with few places other than crack dens to call home.

Finally in 1996, after 27 years of drug abuse, Betty had a "spiritual awakening" and realized she needed help. She entered a rehabilitation center and got clean for six months. Feeling good about herself for the first time in her life, the mother of three decided to visit a doctor for a routine physical exam. And because of the many years she traded sex for drugs, she decided to take an HIV/AIDS test.

"After I tested HIV positive, I went out and used again. I had a feeling that I wanted to die. I was going to do what I had to do and get it over with. I hoped that the using would take me into the AIDS, I wouldn't have to suffer and I would die quickly."

Despite her reckless attitude, deep down inside Betty was afraid. Ignorant to the symptoms and treatment of the virus, she found her way back into a rehabilitation program that same year. But it wasn't until she heard another woman's story about "living with the AIDS virus" that Betty finally adopted the will to survive.

"It was really, really amazing to me that this can happen. I thought it was a death sentence. But when I realized that people could live with this virus, it helped me," she says.

While Betty is one of millions of HIV-positive individuals, she is also a member of a group most at risk of contracting AIDS or acquired immunodeficiency syndrome. No longer considered by society the "gay man's disease," HIV/AIDS is striking African-American women at higher rates than ever before. Since the early 1990s the AIDS virus has been the number one cause of death of African-American women. In fact, in 1998 the Congressional Black Caucus called the AIDS crisis in the African-American community a "public state of emergency."

“In general, the AIDS case rate among African-American women nationally is 15 to 20 times greater than among Caucasian women,” says Cynthia Callahan Davis, an assistant professor in the department of family medicine at Charles R. Drew University of Medicine and Science in Los Angeles, Calif.

Today medical breakthroughs have changed the face of the HIV/AIDS virus. The illness is now treated as a “chronic manageable disease, rather that death sentence,” says Davis, who develops HIV/AIDS related community based outreach projects, ranging from education to mobile HIV screening.

To properly manage virus, HIV – or human immunodeficiency virus, which causes AIDS -- must be detected in its early stages. But many African-American women, especially those who lack trust in the healthcare system, often let the disease go untreated. Some don’t learn they are infected until they have full-blown AIDS. Others learn of their status when they become pregnant.

“A lot of that has to do with their socioeconomic status – they don’t have insurance so they wait until they are really sick before they seek medical care,” Davis says. “But you don’t want to do that with HIV and AIDS. By the time you start to have symptoms with HIV infection, you might have full blown-AIDS.”

Many “at-risk” women fear taking an AIDS test because of the stigma society still places on those suffering from the disease. This stigma is often compounded for African-American women, who must also deal with racism.

"There’s tremendous fear in the African-American community of another discrimination. They fear being ostracized, abandonment and physical abuse if they tell their partner they are HIV positive," says Dr. Susan Hunt, medical director of the Pittsburgh AIDS Center for Treatment, a primary care clinic for people with HIV/AIDS.

Another reason the disease has become so widespread in the African-American community is due to the belief at the onset of the disease that HIV/AIDS affects only gay males and intravenous drug users.

"Early on in the epidemic when that information was presented through media sources, people said 'I’m not gay. I’m not bisexual. I don’t do drugs, so it can’t effect me,'" says Davis. "For years because of this level of denial people didn't think they were at risk, so they were out engaging in high risk activity -- primarily unprotected sex and illicit drug use."

Davis believes the high rate of transmission among African-American women is due to a set of multiple risk factors, including sex with partners infected through intravenous drug use or sex with “closet” bisexual or gay men. HIV infection is also more likely to occur when a women has contracted another sexually transmitted disease that goes untreated, leaving open sores and lesions as portals of entry for HIV. In addition, the crack cocaine epidemic in the African-American community has fueled the disease because sex is often exchanged for drugs, Davis says.

"No one really wants to acknowledge the fact that we (African-American) women need help in our community. They don't see us as a black community of women who are suffering," says Betty. "Until we get some support to provide education to these women, it's (AIDS cases) going to continue to grow."

A Centers for Disease Control and Prevention (CDC) comparison study of AIDS and HIV diagnoses from 25 HIV reporting states in the country from January 1994 to June 1997 revealed that women made up 28 percent of the total HIV cases and 17 percent of AIDS cases. And African-Americans accounted for 57 percent of the total number of HIV cases and 45 percent of the AIDS cases. Eighteen percent of the persons infected with HIV and 12 percent with AIDS contracted the disease though heterosexual contact.

The study states, “Comparing HIV and AIDS diagnoses reported in these states provides a much clearer picture of shifts in the epidemic, with a greater percentage of HIV cases diagnosed among women and African Americans.”

While incidents of AIDS increased among all races through 1994, the highest rate of increase occurred in the African American community. The CDC AIDS/HIV Surveillance Report of AIDS and HIV cases reported revealed that 57,540 black women were diagnosed with AIDS through December 1997.

In addition, the CDC reported that there were more African-American children with perinatally acquired AIDS between 1992 and 1996 than white or Hispanic children. In 1992, 566 children in the CDC’s comparison study group contracted AIDS from their African-American mothers at birth or during pregnancy. By 1996 that number dropped to 331 cases. While the cases of children born with AIDS has dropped in recent years among all races, the highest rate of AIDS infected children were still being born to black women by 1996, according to the CDC study.

Although there is still no cure for AIDS, drug treatments have made it possible for HIV-positive people to live healthy lives. Commonly called “the cocktail,” one of the most effective treatments available today is a combination of drugs, usually protease inhibitors prescribed in conjunction with reverse transcriptase inhibitors called nucleoside analogs, such as AZT (zidovudine). Combination treatments – also known as highly active antiretroviral therapy -- have proven effective in reducing a person’s viral load, as well as making the disease more manageable.

The use of AZT in pregnant HIV or AIDS infected women in the first trimester, during birth, as well as administering it to a newborn, has proven successful in reducing a child’s chances of contracting the disease from 30 to 50 percent to about eight percent, says Davis.

Dr. Hunt noted that treating pregnant women with Nevirapine, an antiretroviral drug, can also reduce a child’s change of contracting the disease from his or her mother. The medication has proven successful in Africa, where the epidemic is more widespread than in the United States and less medical resources are available.

While many medical experts say prevention mechanisms like needle-exchange programs helps stop AIDS from becoming more widespread, most agree that the best way to combat the epidemic is through early testing for the HIV virus. In addition, HIV and AIDS infected African-American women need role models in their communities to educate them about the virus.

Pam, 52, an intravenous drug user for 22 years, learned she was HIV positive when she was six months clean. Soon after learning of her HIV positive status in 1989, Pam became one of the first black female AIDS activists in her community. Working with the Pittsburgh AIDS task force, she said it was the gay male community who first embraced her and helped her learn about the virus.

Today Pam counsels women with HIV/AIDS in the Allegheny County Jail in Pittsburgh. The message Pam preaches to other women is "to keep a positive attitude."

"I always looked at it as I wasn't dying of the disease, I was living with it," she says. "There are certain things you have to do to remain healthy, like eating right … With as healthy as I am my life is so normal that I sometimes forget I have it."

While there are many organizations in communities throughout the country that push and preach HIV/AIDS education and prevention, Davis said it’s important for the public and private sectors in each community to pool their resources.

“There is this push for a broad-based community mobilization where you bring all the institutions within a community together to resolve the problem,” she says.

“We have to bring in the churches, businesses, public health department, experts, people who are infected and/or affected and the schools. We all have to work together in concert so wherever people go they are getting the same message that HIV disease is 100 percent preventable. Prevention is our best defense and people have to acknowledge that we are all at risk. And in the African-American community we have a whole community at risk for infection,” added Davis.

After graduating a recovery program, Betty says she learned how to become a "responsible adult." She went back to school for her GED, and learned computer and clerical skills, which she utilizes in her job as an administrative assistant for a not-for-profit organization. In addition, she is a new homeowner - something that just a few years ago didn't seem possible to her.

Taking her "cocktail" treatment and living "one day at a time" with HIV, Betty says she feels both psychically and mentally healthier today than ever before.

"My health is good - very good. My state of mind is positive. I continue on a daily basis to set change in my life."