Long Way to Go in Helping African-American Women Battle HIV, Activist Says

Q+A with Carrie Broadus, Executive Director of Women Alive

What is the most critical AIDS issue facing the African- American community and how should we best address it?

There is a traditional and hierarchical approach to ranking who is at "greatest risk" of HIV transmission -- for example, men who have sex with men. This ranking does not begin to address the group with the fastest-growing rates: women who are acquiring HIV by having unprotected sex with their husband, fiancé, or boyfriend.

We must remove the labels -- the "behavioral risk groups" -- for women and recognize that if they are having unprotected sex with a man, and they are unaware of their HIV status and/or their partner's HIV status, they should seek and have access to routine HIV counseling and testing services.

We must also address factors such as poverty, unemployment, gender bias, racism, low literacy levels and poor doctor-patient communication, that contribute to the glaring disparities among women of color affected and infected by HIV/AIDS.

Where is the most progress being made in combating the epidemic in the black community?

Through National Black HIV/AIDS Awareness Day events. Through activities such as the annual Martin Luther King Day parades, community forums, and targeted HIV counseling and testing. All of these increase the visibility of the HIV crisis in the black community.

Where is the least progress being made?

Addressing the inadequacies in treatment, access to medical services and economic support systems for the African-American woman and her family.

What are the top myths about HIV you encounter in the African-American community? What is the best way to counter them?

For people who don't know their status, it's, "It can't happen to me -- it's those other folks, the sex workers, the gay men, the drug addicts!" And for those who do, especially the women, it's, "My life is over -- now I can never have a child!"

We can generate frank and open discussion about the fact of HIV transmission among our diverse community of faith, business and civic providers and residents. Women Alive has worked with HIV-positive women who became pregnant, and through our support groups and treatment education and adherence programs, delivered a healthy baby. The past four years, in fact, we have proudly witnessed more than 20 HIV-positive pregnant women.

Do you think too much has been made of the "down low"?

No. The exposure at least created a long-overdue discussion about the reality of men who have sex with men in our community. I just wish we were equally willing to address the "Neglected Truth About Women and AIDS," that the annual number of AIDS diagnoses among women increased 15 times more than among men, that women are dying at twice the rate of men -- these are scandals that also deserve long-overdue discussion.

What are your hopes and fears for the next generation of African Americans as they face the risk of HIV?

I have a whole laundry list of very specific hopes:

Allocate 25 percent of all Ryan White CARE Act funds across all titles to community-based organizations led by and for HIV-positive women. This includes greater funding for housing, transportation, child care and other services that women need in order to begin to take their own health care seriously.

Expand representation on local Ryan White Planning Councils and other decision-making bodies to include women with HIV/AIDS so that the real-life issues that women with HIV face are articulated and addressed. Promote economic stability through educational and vocational training.

Increase funding for medications that treat HIV-related illness, such as medication-induced diabetes. Increase access to health care for women with HIV and their children, including medical care with unlimited OB-GYN services, mental health and other non-HIV-specialty care.

Increase funding for research into microbicides, which enable women to protect themselves from HIV without relying on the cooperation of men, for research into how HIV affects women differently and for research into woman-to-woman transmission of HIV.

Ensure that all Ryan White and CDC [U.S. Centers for Disease Control] data-collection methods that funding allocations are based on encompass HIV as well as AIDS to benefit all women living with HIV/AIDS.

My fear is that the HIV/AIDS system is not willing to accept that the community has the ability to solve its own problems. Oftentimes, large ASOs influence the shaping of policy, funding and programs that do not recognize, honor, respect and address the needs of communities of color combating the HIV epidemic.

Do you think activism is an effective way to fight the epidemic?

Yes, activism and self-empowerment are critical in every institution that affects the lives that African Americans with HIV/AIDS live, from the halls of power to the medical profession to the church.

We must address current bias against women of color within the HIV health care system by acknowledging historical discrimination in research and cultural and gender biases that impede expanding HIV-positive women's access to clinical trials and new medications.

Increasing the participation of women of color in the decision-making process will strengthen their ability to eliminate the challenges, thereby improving their educational and socioeconomic status and their overall health and well-being.

Accessing prevention, care, treatment and other HIV/AIDS services is becoming an increasing challenge for African-American women. Many rely on publicly funded programs. With many of these programs under threat, advocacy will play a significant role in how programs are funded. Women Alive's part is persuading decision-makers to see HIV-positive women's needs and concerns as being very different from those of HIV-positive men. But at Women Alive, we believe that building an AIDS advocacy movement that changes policy to reflect the realities of HIV-positive women's lives requires them to advocate for themselves.

In addition, we must advocate within the faith-based community. Often this involves building bridges and addressing HIV -- and especially HIV denial and stigma -- on their terms, and that takes time and patience, not direct confrontation. Our approach to reaching out to churches includes first educating them on the serious spread of HIV within communities of color, then assisting them in identifying activities that they are willing to undertake, such as health fair and community forums, and linkage to HIV counseling and testing. We also set up discussions between women living with HIV and church leaders on the importance of caring for people living with HIV.

One of our local successful collaborations is with Christ Full Gospel Baptist Church. Over the past year and a half, we trained them on conducting small-group HIV prevention educational workshops, including a very candid discussion on abstinence and the proper use of condoms.

Can you expand on your approach to activism and the attempt to meet the church on its own terms?

Some church leaders have built their congregation on "Love the sinner, hate the sin." They teach that homosexuality is a sin, and HIV/AIDS is the punishment for their sins. Now, our job is not to criticize them for their belief -- no matter how we may feel about it. That will only block communication. Our job is to identify how, given what they believe, they can still help to stop the spread of HIV and provide compassion and caring services to those living with HIV/AIDS.

It also helps to be able to speak the language of scripture, which many activists unfortunately cannot do. It helps, for example, to be able to remind a minister that the greatest commandment is to "love thy God with thy whole heart, mind and soul. Second unto this law, and upon this hangs the whole law, is to love thy neighbor as thy self, for how can you say you love God whom you have never seen and hate your neighbor you see every day?"

One thing we all can agree on is that Jesus is the great example. One day he was traveling and he came upon a crowd of people, among who was a blind derelict (neglected, abandoned, ruined, deserted, homeless, maybe an addict). The more the derelict tried approaching Jesus, the more he was pushed back by persons who felt he was not worthy to come near to the Son of Nazareth. Jesus, hearing the derelict calling out to him, asked for the man to be brought to him. Jesus asked the man, "What is your desire?" The man answered, "I want to see!" Jesus touched his hand to the blind derelict's forehead and said, "So shall you see!"

The moral to this biblical story is that Jesus did not ask the derelict "How did you become blind? Why are you a derelict?" Jesus provided the man with what he needed -- the ability to see. His act demonstrates compassion, understanding, caring, not judgment or condemnation. This is a message that our church leaders understand.

Can you recommend one action everyone can take to end the epidemic?

I can recommend a number of them! Get involved by volunteering at an AIDS services organization. Help your church set up an AIDS ministry. Get tested. Talk about HIV/AIDS with friends, family, loved ones. And never judge.

Click here to e-mail Carrie Broadus.

Carrie Broadus

About Carrie Broadus

Broadus is the executive director of Los Angeles' Women Alive. The pioneering organization has distinguished itself for offering an array of innovative services addressing the specific needs of women with HIV, including treatment adherence and education, pregnancy planning, child care, a by-about-and-to newsletter, and a national toll-free hotline (1.800.554.4876). Helping women at sexual risk grasp their need to protect themselves and know their HIV status, HIV positive women contribute "role model" stories to the Sisters Alive HIV prevention project. Broadus herself has devoted more than 25 years to advocacy, community affairs, and health planning, including stints as the consumer advocate representative at LA Care Health Plan, one of California's largest HMOs, and as a policy development staffer at AIDS Project Los Angeles (APLA). Broadus' emphasis on self-empowerment for women with HIV has increasingly made Women Alive, which was founded in 1991 as a support group for women with HIV, one of the nation's leading authorities and advocates on issues facing HIV-positive women.