Determing life values
How Much Should We Spend on Conferences?
By Phill Wilson
“The great work begins.” This line from Tony Kushner’s Pulitzer Prize winning play, Angels in America truly captures the challenge faced by all of us as we travel home and back to our work after participating in the largest International AIDS Conference ever. This week has been a whirlwind of events, people and information. Bill Clinton and Bill Gates have used this meeting to bring attention to and commit action towards the AIDS crisis in developing nations. Researchers from academia, government and the pharmaceutical industry have reported on a number of promising advances in the treatment of HIV. And grassroots activists have staged demonstrations to ensure their voices—and the voices of those for whom they protest—are not lost in this fight.
These individual and collective efforts have thrust AIDS back into the spotlight. They have brought attention to people and programs—some more successful than others—that have been dedicated to fighting the pandemic. But is it worth it?
Tens of thousands of people from around the world attended this conference, which cost more than $25 million to produce according to estimates by the International AIDS Society. In the global fight against AIDS, $25 million is a fortune. And, as important as the attention brought to the pandemic is, I have to wonder if the investment in a conference is truly the best use of those funds at a time when at home and abroad, people don’t have all they need to fight this disease.
If the answer to that question is to be ‘yes,’ then the knowledge and information we gained at this meeting must be transformed into actions that directly affect the course of the AIDS pandemic. If we want the time and money invested in Toronto to be well spent, those who were present must commit to do something with what we gained.
This is especially true for the Black Leadership Delegation and the Black AIDS Institute It is only fair that we examine what BAI spent on our programming for the IAC and ask ourselves hard questions about its value. As proud as I am of the historic and groundbreaking events we sponsored and the attention it focused on AIDS in Black America, I have to admit that I question if this was the best way to use scarce resources. I’m not suggesting we shouldn’t be proud of our work done here or that it isn’t important. But when people are dying—our people—we must be extra vigilant about the use of our limited resources.
Because media coverage is not medicine. Press conferences are not doctor visits. Networking is not nutrition. Sound bytes will not save black people—or any other people—from AIDS.
It is what we do with all of these experiences that will.
So, we must hold ourselves and each other accountable to do what we have said we will do. As Black leaders we all stood up and publicly committed to appoint a National AIDS Director within our national organizations and to increase the number of Black people who get tested for HIV. And, as important as it was to make those commitments, the commitments were only the beginning. It is now time to deliver. And it is incumbent upon each of us to see that we deliver in time.
Angels in America highlighted the consequences of inaction in the early days of AIDS. Fear, ignorance and intolerance prevailed. The playwright, though, suggests a different approach through a notoriously fearful and ignorant character who urges: “Learn at least this: What you are capable of, let nothing stand in your way.”
We are capable of turning back the tide of AIDS in Black America. We know what needs to be done and we have committed ourselves and organizations to do it. Two years from now, the 2008 IAC is in Mexico City. Let us report that we have done what we said we will do.
Today, “the great work begins.”
Yours in the Struggle,
Phill Wilson is the executive director of the Black AIDS Institute.
World AIDS Day 2006
By Phill Wilson
AIDS in America today is a black disease that can only be stopped if each of us does our part--from churches to civil rights organization, from media organizations to academic institutions, cultural organizations to policy making bodies, every institution in Black America must make ending the AIDS epidemic a top priority.
No matter how you look at it, thru the lens of gender, sexual orientation, age, socio-economic status or region of the country where you live, black people bear the brunt of the AIDS epidemic in this country. African Americans are 13 percent of the U.S. population, but we represent nearly 50 percent (or 600,000) of the estimated 1.2 million Americans living with AIDS. Blacks account for 54 percent of the new diagnosis in the country, 63 percent of the new cases among youth, and nearly 70 percemt of the new cases among women.
Fortunately, our institutions are beginning to step forward. During the XVI International AIDS Conference in Toronto in August, the Black AIDS Institute in partnership with major civil rights organizations issued a Call to Action that was answered by politicians and leaders of eight civic organizations. These forward-thinking leaders agreed to take action to reduce the HIV rates in Black Americans over the next five years; to increase the percentage of African Americans living with HIV who know their HIV status; to increase the percentage of African Americans living with HIV who are in appropriate care and treatment.
Since then, NAACP Chairman Julian Bond and President Bruce Gordon publicly took HIV tests during the organization’s national conference in Washington, D.C., and encouraged the thousands of people present to also take the test.
As part of the 9th Annual World AIDS Day commemorate, Bishop T.D. Jakes, pastor of the 30,000-member The Potter’s House will publicly take an HIV test during a church-sponsored community AIDS rally in Dallas.
We’re on the right road, but a long way from ending the epidemic. The CDC estimates that at least 25 percent of the 1.2 million Americans with HIV are unaware of their status. The agency is recommending that routine HIV testing be implemented in all health care facilities, including emergency rooms.
People who don’t know they’re infected are less likely to protect their partners and completely unable to receive treatment. In order to keep those already infected healthy and to help them avoid the further spread of the virus, we have to identify them and get them into care. The operative here is “getting them into care.”
Before we can get people into care we must encourage the black community to take ownership of the disease, to understand the science of the disease and to participate in comprehensive, age-appropriate and culturally-competent prevention methods.
This year’s World AIDS Day theme is “Stop AIDS. Keep the Promise.” Ending AIDS is possible and achievable, as long as we mobilize our resources, put aside our differences and fight like our lives depend on it.
We’re calling on Black America — from individuals to political, religious and cultural leaders — to commit to taking action against HIV/AIDS by engaging in a coordinated campaign to develop a national commitment to end the AIDS epidemic in our communities by making fighting AIDS a top priority and setting concrete measurable goals and objectives with real deadlines. Black leaders, institutions and cultural icons must identify strategies and activities that match their unique niches and capabilities.
We must build a new sense of urgency in Black America, so that no one accepts the idea that the presence of HIV and AIDS is inevitable.
Phill Wilson is the executive editor of The Black AIDS Institute.
Rashidah Abdul-Khabeer Turns Compassion into Action
By Randy Boyd
As an epidemiology nurse in a major medical center in Philadelphia in 1983, Rashidah Abdul-Khabeer saw right away how AIDS was going to affect the Black community. At the time, the national profile for persons with AIDS was white, gay and male, but the first patient Abdul-Khabeer encountered was a Black, gay male prostitute.
“The radiologist told the patient he had AIDS, then left the room, leaving me to explain ‘AIDS’ to this young man,” says Abdul-Khabeer. “That’s when I realized: that’s how people are going to deal with AIDS in the Black community: give them words, then walk away.”
Abdul-Khabeer formulated a plan. She began a campaign of public speaking to heighten awareness, but when she realized the AIDS Task Force of Philadelphia was not focused on the Black community at large, “I just stopped and created a new organization.”
“The organization” is the Circle of Care, a program of the Family Planning Council, a private, non-profit organization whose mission is to provide access to high-quality health and prevention services to primarily low-income individuals and families. The Circle of Care provides HIV-related care and services to children and their families, as well as to HIV-positive pregnant women. As deputy director, Abdul-Khabeer is responsible for the daily oversight of the programs within the Circle of Care, which include clinical and specialty HIV medical care, case management and support services, and perinatal transmission prevention and prevention education.
Abdul-Khabeer was honored Thursday, Nov. 16 as one of Black AIDS Institute's Heroes In The Struggle.
“In the beginning,” says Abdul-Khabeer, “people died very quickly. We were just trying to stem the tide and keep up with policy, issues, and finding out what resources were being allocated to what community.”
Now she looks back at that time as 15 years of laying the groundwork, 15 years of trying to galvanize the Black community, and of begging Black congressional leadership to speak about AIDS. “It took a decade for people to say things, but they are at the forefront now. They had to realize it wasn’t just white gay men, that it was IV drug users, mothers and children.”
Since those early days, Abdul-Khabeer has been involved nonstop in the struggle. In 1985, she founded BEBASHI, Blacks Educating Blacks About Sexual Health Issues, a Philadelphia community-based organization providing sexual health education, case management and support services. Abdul-Khabeer is also a founding member of the Philadelphia AIDS Consortium, the Minority AIDS Project of Philadelphia and the National Minority AIDS Council in Washington, D.C. In addition, she has served as a consultant on AIDS education, services and policy development with the Centers for Disease Control and Prevention, the Health Resource Services Administration (a branch of the United States Department of Health and Human Services), MACRO International (an international Washington/Atlanta-based health consulting firm), the Philadelphia Department of Public Health as nurse epidemiologist, and numerous community-based organizations. Her expertise includes community organizing, organizational development, proposal writing, program development, implementation and evaluation, and grants management. In all, Abdul-Khabeer has advocated extensively for social and civil rights for racial, ethnic and sexual minorities for more than 30 years.
“To correct long-standing injustices,” is the answer Abdul-Khabeer gives when asked what motivates her continued efforts. She’s also quick to point out the reactions of the families in the Circle of Care as a constant source of fuel and inspiration. “Our families stay with us. We nurture them. They remain close to us and influence our program immensely. Seeing long-term survivors and babies who survived grow into adulthood and stay in the circle—we are embraced by people who truly walk the walk.”
Abdul-Khabeer has served as guest lecturer and faculty for several educational programs, including the Pennsylvania AIDS Education and Training Center, the Family Planning Council Training 3 Program, the New York Planned Parenthood Nurse Practitioners Training Program, the Philadelphia Department of Public Health, Lincoln University, MCP Hahnemann University, Cheyney University, and the University of Pennsylvania School of Nursing. Additionally, she collaborates in the field of HIV, reproductive health and family planning with the Division of Early Childhood, Women and Youth Health of the Philadelphia Department of Health, and the University of Nebraska’s National HIV Prevention Program.
Throughout all her work and experience, Abdul-Khabeer’s biggest message remains clear. “If you’re infected, stay in care.” And to the community at large: “Knowing your status is critical. You can’t assume you’re not affected because you’re not in some artificial category.”
While testing is readily available, Abdul-Khabeer believes not enough is being done to help people connect on an emotional level (to being tested). She cites the story of a woman who was seven months pregnant and would not get tested because she believed her husband to be faithful…until he left her, after which she tested positive. Abdul-Khabeer also encourages the world not to ignore the realities of communities at risk, citing the fact that many Black families get their healthcare from ER facilities, where it’s not practical to test for HIV.
To others, these obstacles might seem like daunting barriers, but to Rashidah Abdul-Khabeer, the rewards of her work far outweigh the struggle. “I can’t imagine there won’t be some part of my life that doesn’t involve AIDS. To see the diminishing mortality rates is rewarding. We don’t see people dying the way they used to. It really isn’t a death sentence because of care. The longer I can contribute to that, the better I feel. I can’t think of anything I’ve done in life where I feel more positive.”
Justine Mwansa, a widow, mother of two and guardian to eight children, rests outside her home before going to her volunteer job where she cares for AIDS sufferers in their home.
Photo Credit Yvonne Barlow
By Yvonne Barlow
LUSAKA, ZAMBIA -- Justina Mwansa is a widow with two children. She lives in a one-room home, which she shares with her mother and eight orphans that were left with her after relatives died of AIDS.
Mwansa earns a living washing the laundry of middle class Zambians, and she sells whatever she can grow from her garden. But, for a few hours each day, Mwansa steps away from her difficult life and volunteers to care for three neighbors suffering from AIDS. She bathes, feeds and ensures they take their medicines.
“I want to take care of friends who are sick. It is like God’s work and I want to do this work,” she said.
A few hundred yards away lives Lomance Phiri, a widow with seven children and five orphans under her guardianship. Phiri also volunteers to care for AIDS sufferers. “I nursed my husband when he died of TB and wanted to learn to give that care to others,” Phiri said.
The women were trained by VK Home-Based Care, a grassroots organization based in Garden Township, a dusty settlement of around 150,000 people on the outskirts of Lusaka.
Elsie Choompa, the director, is a nurse who runs the VK medical clinic in Garden Township. She takes no pay and neither does her assistant, Peter Kalemeera, who coordinates the needs of those seeking help with those volunteering assistance.
The project started in 2002 after a friend asked Choompa to help a relative dying of AIDS. Choompa’s own sister was also dying from the disease and she realized that care in the home was far better than any assistance given at overstretched hospitals.
At the beginning, she ran the volunteer project while keeping a part-time nursing job, but as more people needed help, she was forced to resign from paid employment. She and her three young daughters live on financial support from her ex-husband. She said it would be nice to have an income but, “It is better to see the project work, to see patients recover, see their lives improve.”
Kalameera initially began volunteering for the VK project after his son was diagnosed with HIV. He was a social development worker with foreign charities for 25 years, and when his contract ended, he offered his time to the VK project. His family lives on his wife’s earnings.
He said life is hard. “We struggle to eat and, once in a while, I write a project proposal for a group to earn a little bit of money.”
But he believes the project is vital. “It is important for the client that new ideas of home-based care do not collapse,” he said.
Many of their clients are sick and alone with no one to ensure they eat well or take their medicines. VK provides caregivers with a 10-day training program in which they learn about basic nursing care and how to recognize complications of AIDS.
Anna Wilima was ill with HIV and tuberculosis when Kalameera found her a caregiver. The widow lived with her daughter, who worked long hours in order to pay for rent and keep. As a result, Wilima was alone for much of the day. Her weight dropped to 44 kilograms and her immunity to infection was desperately low. She would often take her ARV medicines on an empty stomach, which would make her feel sick and dizzy. “I wanted to collapse,” she said.
VK found Wilima a caregiver and, after two months, she is gaining weight and feeling stronger. When she is well she said she wants to train to be a care giver.
News of the group’s work is spreading and other communities are copying the idea, according to Maurice Shakwamba, who facilitates HIV programs for Voluntary Services Overseas in Zambia.
“It works well,” Choompa said. “Patients are always happier in their own homes, and others are learning about HIV and not to be afraid.”
Yvonne Barlow is a freelance writer based in London, England. She traveled to Zambia in late September. This is the second of a three-part series.