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Amandla! -- Power to the People

September/October 2000

The motherland. Africa takes you there and then some. I can't speak for all the brothers and sisters of African descent who find themselves scattered about the Americas, however, the opportunity to attend the 13th International AIDS Conference also represented a homecoming of sorts. A return to where it all began for my ancestors, for all our ancestors for that matter.

I knew before traveling to Africa that the rates of HIV infection are the highest in sub-Saharan Africa. Nevertheless, until you actually come face-to-face with the reality of AIDS in Africa I don't believe one can actually comprehend the devastation HIV/AIDS is causing.

  • 24.5 million adults and children living with HIV in sub-Saharan Africa (out of 34.3 million worldwide)

  • 4.2 million South Africans living with HIV

  • 500,000 AIDS orphans in South Africa

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  • 550,000 newly infected South Africans each year

While in Capetown, I visited the Langa township. In this community constructed for 80,000, but currently home to 250,000 people, I saw the legacy of apartheid (abolished in 1994) and learned of the devastation of AIDS. As I examined the numbers, statistics and figures I wondered: How did this happen? What can be done at this point? Slavery, colonialism, apartheid and now AIDS -- what's a continent to do to get a break? However, despite hundreds of years of oppression and with less than ten years of freedom and democracy, I also felt from these people a willpower to triumph over adversity.

Against this backdrop, for the first time, the world traveled to a developing nation to renew its International AIDS Conference. It could not have come at a better time. The primary focus of the 13th International AIDS Conference held in Durban, South Africa was to address questions surrounding the explosive rate of HIV infections in sub-Saharan Africa.

In the southern cone of the continent, at least one adult in five is living with HIV. One in five. And for the most part there is no incentive in most of Africa to test for HIV. There is no protection of individual rights; access to treatment and care is basically nonexistent in most impoverished and rural communities. Not including funds required for antiviral treatment, it is estimated that upwards of three billion US dollars would be needed every year to support effective prevention programs that would include treatment of mother-to-child transmission, condoms, educational programs, treatment of sexually transmitted diseases and blood safety programs. Where do you begin to overcome such insurmountable odds?

South African HIV and AIDS community leaders and activists used this once-in-a-lifetime opportunity to demand a new, diverse and globalized response to an epidemic that is producing 1,700 new infections per day in South Africa. For treatment advocates the conference was not only an opportunity to break the silence on HIV/AIDS (the theme of the conference), but also a chance to remind visitors of the recent history in the country. The people of South Africa built a resistance struggle based on grass roots activities that empowered a population of ordinary men, women and children with the strength and courage to overthrow apartheid. They know that their struggle to implement effective measures against HIV will require the same level of commitment and courage.


Community Indaba -- "Coming Together, Sharing"

In an attempt to understand how activists in South Africa are dealing with HIV/AIDS, I decided to follow the community and activist track of the conference. It's gonna take a village, a community and then some -- Indaba. The theme of the Community Indaba was "Community Voices -- a Call to Action." This conference was an opportunity for South Africans to directly communicate and learn from community activists and colleagues long engaged in struggle for better treatment and care for HIV and AIDS related illnesses. Shaun Mellors, an HIV positive South African AIDS activist, in a passionate voice that generated shout outs of solidarity from the audience, Amandla! (power to the people), stressed the need for breaking the silence on "inclusion" and "accountability." He challenged people living with HIV to expand their notion of community in this struggle and create a movement of solidarity that is inclusive of infected and affected populations. Mellors challenged all South Africans to take responsibility for the country's current situation in the AIDS epidemic, to be proactive in this struggle and in a search for local and global solutions.

The highlight of this opening session was the three first-person narratives: an HIV positive gay man from Australia, an HIV positive black mother from South Africa and an HIV negative drug user from India. Each individual spoke of how HIV has impacted their life, strengthened their commitment to the struggle and gave them the resolve to break the silence on HIV and AIDS. Musa Njolo, an HIV positive mother of an eight-year-old boy, was visibly frustrated and angered by the state of AIDS politics in South Africa. Njolo blasted government policy that continues to severely restrict treatment and care to people living with HIV, especially poor women and children.

Statistics released by the Kaiser Family Foundation and the American Medical Association show that in South Africa there was a 34% rise in HIV infected pregnant women in 1998 and a 64% rise in prevalence in pregnant teenage girls. The refusal of the government to support the use of anti-HIV treatment during pregnancy, proven successful, is in Njolo's words, "a government that does not want to extend the life of a child whose mother will eventually die of AIDS."

Break the silence on the unequal distribution of wealth and power, on political inaction, on gender inequality, on access to care/treatment, on options to educate impacted communities, on information dissemination and tools of negotiation, on discrimination, racism and human rights abuses.


Community Activists Take to the Streets of Durban

"Cheap AIDS drugs save lives. Affordable treatment NOW!" "Let me start by accepting what has recently become less obvious," Winnie Madikizela-Mandela declared at the AIDS protest march. "AIDS exists and HIV causes AIDS." Winnie Madikizela-Mandela, Pan-Africanist Congress MP Patricia de Lille and Anglican Archbishop Njongonkulu Ngundane joined Treatment Action Campaign (TAC), ACT UP (the old school version!) and Health GAP Coalition in a march in Durban to protest government and pharmaceutical inaction. "If we struggle against HIV/AIDS the same way we struggled against apartheid, we can turn back time." Mrs. De Lille added, "the drug companies must know that HIV positive people are a powerful force."

TAC members and people living with HIV/AIDS (PWHAs) are frustrated and rightly so by what appears to be the complete absence of a comprehensive HIV/AIDS care and treatment strategy for South Africa. Activists and community organizers used the demonstration to bring attention to the need for the South African government to make affordable medicines, including anti-retroviral drugs available to PWHAs. They demand the immediate distribution of Viramune (nevirapine) and AZT to pregnant women with HIV. AIDS activists ask: If the government's core focus is prevention, why doesn't it try to prevent all these children from becoming orphans in the first place by providing anti-retroviral treatment to keep parents alive and unborn babies HIV negative? They promise to increase pressure on the government including, if necessary, demonstrations of a magnitude not seen since the struggle against apartheid.

TAC organizers are also critical of major international pharmaceuticals and UNAIDS. International activist group ACT UP maintains that the drug pricing policies are outrageous and appalling. Mark Milano, speaking on behalf of ACT UP and acting in collaboration with TAC, stated that "lower drug prices were promised for a long time with no results" from either the pharmaceutical companies or action on the part of UNAIDS. Activists went on to criticize pharmaceutical companies' promotional spending practices and donations to poor countries. Dr. Peter Piot (UNAIDS) estimates that $3 billion is needed annually to effectively fund HIV prevention programs in Africa. In a separate presentation at the AIDS 2000 Conference, Dr. Richard Laing, School of Public Health at Boston University, reports that U.S. pharmaceutical companies allocated $5.9 billion to promotional spending in 1998. With millions of people dying worldwide, how is that level of promotional spending justified?

The solution to the treatment dilemma in South Africa, according to TAC and ACT UP, is not donations and promotions, but rather lower prices, the introduction of generic drugs, and a real commitment to research and development. During the conference, Viramune producer Boehringer Ingelheim offered to provide the drug free to the government for five years. The representatives from Merck and Glaxo Wellcome restated their commitment to lower prices.


AIDS = Death

It is estimated that 95% of all people living with AIDS in Africa do not have access to any drugs to fight the disease. South African High Court Justice Edwin Cameron, a person living with AIDS, in a keynote address to delegates acknowledged that, "I exist as a living embodiment of the inequity of drug availability and access in Africa . . . I am male . . . I am proudly gay . . . I was born white. My presence here embodies the injustices of AIDS in Africa." Cameron stated that he pays $400 a month for his medication, while 290 million other Africans survive on less than $1 a day. He said that he is alive today simply because, when he took ill in 1996, he was able to afford a combination of the drugs AZT, Epivir and Viramune. He said that it is "shocking and monstrous" that some should be living while others are left to die simply because they are poor. Cameron applauded the Treatment Action Campaign on its direct action demonstrations and demands for the government to implement an immediate program of anti-retroviral treatment to reduce mother-to-child transmission of HIV. Cameron slammed President Thabo Mbeki's speech at the opening ceremony and his "flirtation with those who . . . dispute the etiology of AIDS." Cameron stated that Mbeki's policy is unsound and "has created an air of unbelief amongst scientists, confusion among those at risk of HIV, and consternation amongst AIDS workers."


Living with HIV

"LOVE Life -- Talk about it" is the largest and most comprehensive national HIV prevention effort dealing with the threat of HIV/AIDS to youth (15 - 20 year-olds) ever in South Africa. The campaign using innovative radio ads, TV programming, website, newspaper and teen hotline is piloted by four local youth who engage in frank conversations about their lifestyles and the effect of HIV/AIDS on their lives to bring an awareness to South African youth.

The truth is that South Africa is making progress in primary HIV prevention, but there must be a long-term commitment to frontline intervention in order to obtain a consistent and significant reduction in HIV in youth, as obtained in Uganda. In Uganda, successful peer-education prevention programs such as "True Love" (monogamy in marriage) have cut the HIV infection rates in half among youth.

A few times during the week the mounting reports of deaths, rates of infection and the sheer lack of care and treatment of the HIV/AIDS epidemic in Africa dismayed me. What could I do to make sure that this struggle is not forgotten? How could I help facilitate change? More than once I sat dumbfounded, contemplating a situation that felt hopeless, in the comfort of my hotel (29 floors above the harsh realities of Durban overlooking the stunningly blue waters of the Indian Ocean). And as I pondered my own existence, I knew that in a few days I would be on a plane, on my way back to the U.S. and a healthcare system, which though not perfect is accessible to the vast majority.

Another South African group I spoke with, the National Association of People Living With AIDS (NAPWA), made me remember how and why I became involved in the HIV/AIDS movement. This conversation forced me to reexamine my way of thinking about the current situation in Africa. Our talk was devoted to the ways that affected communities -- with little or no financial resources -- come together and create workable solutions to HIV/AIDS. Can anyone remember how the gay and lesbian communities in the U.S. responded to the disease in the 1980s? Have you noticed the change in how African-American and Latino/a communities are responding to HIV today? Grassroots organizing.

A woman involved with the Sinosizo home-based care program, who I spoke with briefly, described the situation of children aged nine to 14 who are now the primary caregivers for their parents dying of AIDS, as well as for younger brothers and sisters. Many of these households have no income. Children are forced onto the streets to beg, steal and trade sex for money and/or food. Most are malnourished. There are no beds in many homes. Parents are often sent home from the hospital two or three days before death and often children are the only caregiver available to cleanse and lift their parents to and from toilets. In addition, these children have to cook on open fires, carry smaller siblings around on their backs, wash clothes and fetch drinking water from long distances. The Sinosizo provides home-based training for children, not because they believe children should be caring for dying parents, but rather because there are no other options available.

There is a township not far from Durban where a group of women have created an orphanage to ensure that the children orphaned by AIDS have at least the basic necessities of life. The community center was created after it became apparent that AIDS affected the majority of the households, and that there would no one left in these homes to look after the children. The center is entirely dependant on volunteers, who take responsibility for making sure the children are cared for. They try to provide one meal a day and some basic education, but mainly the center is a place for the children to play and sleep.

The significance of a support system for "AIDS orphans" in Africa goes beyond our conceptualization of HIV and AIDS related deaths in the United States. In South Africa there are nearly 500,000 AIDS orphans and estimates indicate that these figures will more than double by 2005. These children come from homes where virtually every potential caregiver and/or provider is sick or has died from AIDS and/or the child was abandoned because of the stigma and discrimination associated with AIDS. Without the protection of family, children lose even their basic human rights. These women and NAPWA are breaking the silence on AIDS; dealing with it openly and honestly as a community; and using their African culture and family traditions to find solutions for the people affected and infected. Isn't that what gays and lesbians did in the 1980s, and what communities of color are doing today? No, it was not and still is not perfect, but if we waited for perfection -- 1,700 new infections daily.


HIV and Violence Against Women

Violence against women remains one of the most overlooked factors driving the HIV pandemic. An address by Dr. Geeta Rao Gupta, International Center for Research on Women, focused on gender, sexuality and heterosexual transmission of HIV. Gupta noted that the cultural specific constructs of gender roles, norms and expectations in many societies have positioned men in positions of power and in control of female sexuality and reproductive rights. Because men operate from an absolute position of power in these societies, they dictate sexual practices, the number of and choice in sexual partner(s), who obtains sexual pleasure and when, and who controls procreation. The 5 P's of gender relations are power, practices, partner, pleasure and procreation. Gupta maintains that the unquestioned image of masculinity creates notions of male invulnerability and self-reliance. Consequently, men do not acquire the necessary information to reduce their own risk for HIV. They engage in multiple sexual relations, while maintaining sexual domination over women and deny sexual activity with other men. In most societies there is no discourse on sex and sexuality. All of these factors place heterosexual women at a higher risk for HIV than their heterosexual male partners. Gupta advocates for the following changes in gender relations: 1) decrease in gaps in education 2) improved economic access for women 3) improved political participation for women and 4) decrease in sexual violence against women. She maintains that demanding changes in gender roles does not compromise multi-culturalism and diversity. Gupta concluded that a society that empowers women does not disempower men.

Other studies from countries in southern Africa confirm that various forms of violence against women are practiced, including physical/sexual abuse and rape. The fear of violence or the experience of violence may interfere with a woman's decision to seek voluntary testing and counseling, as well as asking their sexual partner to use condoms. All of these factors place women at a higher risk of violence (emotional and sexual) as well as increasing their risk for HIV when forced into unprotected sex with partners, husbands and trading sex for money with multiple partners.

One day, the young girl (maybe 18 years old) who works in the store I stopped in every morning to buy bottled water said hello. She wanted to know about the "AIDS Conference." What is HIV? How do you know if you have it? What does AIDS look like? She had so many questions. I wished South African president Thabo Mbeki could have heard her. As simply as I could I explained the importance of HIV testing, treatment and care. However I could see that she was still confused. No one had ever explained HIV to her or her friends.


To Treat or Not to Treat

The general consensus to arise during this conference was that the costs of medicines are and will continue to be harmful to the improvement and development of adequate healthcare infrastructures in developing nations. Can we simply dismiss treatment of HIV/AIDS in Africa on the grounds of non-existent infrastructure? I think not. As one delegate asked: "Where on earth is there no healthcare infrastructure?"

It is true, the majority of the continent suffers from a dilapidated, outdated, and over-utilized healthcare system, but it does have healthcare. It can be changed. It can be improved. These things must happen. However, with the prevailing pricing structure in the pharmaceutical industry there exists little or no incentive for changes to current healthcare system in countries such as South Africa. Why improve the system if you can't afford the drugs? South Africa has a first-world private sector and within that sector there exists a first-world healthcare system. Where is the debate that questions a two-tier health care system? Why is the focus simply directed at what is not available? Why aren't we questioning the inequities of the existing private healthcare sector and a market that forces pharmacists, physicians and HIV specialists to join the private sector in order to practice, rather than providing public healthcare services? An argument that dismisses the possibility of treatment and care due to cost is a decoy of pharmaceuticals who refuse to address the high cost of anti-retrovirals and a deceptive ploy of a government that refuses to address its own mismanagement and lack of leadership in the HIV epidemic.

On the other hand, "doing the right thing" can be complicated. As Phill Wilson of the African American AIDS Institute (U.S.) stated, "there is an obligation not to harm . . . as we enter into different countries and cultures . . . in regards to resistance and compliance." Do we [developed nations] want to be seen as "pill pushers"? What are the ramifications if we jump the gun? Is distributing pills too narrow of a focus when it comes to care and treatment? What about testing, monitoring and counseling? An equitable treatment program will require safe, effective and wide distribution of anti-retroviral medicines. People living with AIDS and those providing care in Africa will need to monitor treatment of opportunistic infections, plus provide psychological support and financial protection (from illness and disease). We also need to support treatment that includes clinical and laboratory competence, and assurances that a continuous drug supply will be available. What will happen if we get these nations "hooked" and additional medications are not available when changes in drug-regimens are required? Who is going to deal with treatment failure, toxicity, development of resistance, and the possibility for increased treatment access inequalities? It's not perfect, but if we wait for perfection -- 550,000 new infections every year.

So it's agreed that the cost associated with anti-retroviral therapy should be decreased; an equitable and reliable distribution system needs to be implemented; access to treatment and clinical support will always be a problem, as will poverty (food), sanitation (water supply), and homecare. But with six new infections every minute in South Africa, do we wait for the perfect drug and the perfect system? Absolutely not. The infrastructure system will be improved through doing, not by waiting.


Amandla! -- Power to the People

Nelson Mandela, the founding father and first president of South Africa's democratic era, closed the 13th International AIDS Conference. Mandela was released from Robben Island Prison in February 1990 after serving 27 years. He belongs to the nation. His work is the work of South Africa. In his address, Mandela eloquently and indirectly called for an end to the recent conflict between President Mbeki and AIDS experts around the world.

"Now, the ordinary people of the continent and the world," Mr. Mandela said, "would, if anybody cared to ask their opinions, wish that the dispute about the primacy of politics or science be put on the back burner and that we proceed to address the needs and concerns of those suffering and dying." Mandela never mentioned the issue by name, however everyone in the audience knew exactly what he was talking about, Mbeki's association with HIV denialists. "In the face of the grave threat posed by HIV/AIDS," Mandela continued, "we have to rise above our differences and combine our efforts to save our people. History will judge us harshly if we fail to do so now, and right now."

With his white hair shining in the spotlight, Mr. Mandela looked and sounded like a prophet. He spoke to nearly every single issue I (and many thousand in the audience) had hoped for Mbeki to address at the opening ceremony. Mandela mentioned safer sex, abstinence and condom use as necessary steps to prevention "about which there can be no dispute." And in a list of "bold initiatives" that are necessary in the struggle against HIV/AIDS Mandela included "large-scale actions to prevent mother-to-child transmission." The South African government thus far has not approved a national program to prevent HIV infection through anti-retroviral treatment of mothers and newborns.

Drawing cheers and applause from nearly every completed sentence, Mr. Mandela condemned ongoing discrimination and stigmatization of people living with HIV/AIDS. He called for an aggressive treatment of opportunistic infections and for assistance to families and communities devastated by the disease. "We have a duty to give support and love to people who have acquired this disease not because of any bad behavior on their part," stressing, "especially children."

Charles E. Clifton is the new editor of Positively Aware and Director of Communications for Test Positive Aware Network.




  
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This article was provided by Positively Aware. It is a part of the publication Positively Aware. Visit Positively Aware's website to find out more about the publication.
 

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