Africa is the birthplace of HIV/AIDS. No other region of the world has more people living with the disease or has had more people die from it. Yet despite being the epicenter of the epidemic, it took years to raise awareness about it, and much longer to receive life-saving drugs at an affordable price.
In the early days of AIDS in Africa, there was no official name for the disease. In many places it was called slim disease because people wasted away before they died. HIV wasn’t killing the young or old in large numbers, but it was decimating breadwinners, teachers, farmers, mothers and fathers - people in the prime of their lives. Grandparents in their 80s suddenly found themselves raising their children’s children.
Stigma, discrimination and superstition took hold. Ignorance about HIV was helping to kill – ignorance even at high levels of government. Tens of millions died from AIDS in Africa.
While the search for treatment and a vaccine eventually began in the U.S. and elsewhere, sub-Saharan Africans were often left on their own to help keep friends and family alive. However, without medicine, patients could only be treated with love and dedication. But that only went so far.
“At the peak of the AIDS epidemic in Africa, HIV accounted for two-thirds of all adult deaths. Can you imagine what that would be like in our own village, our own community? There were communities in which the only business that was increasing was the funeral business,” said Dr. Thomas Frieden, director of the CDC, the U.S. Centers for Disease Control and Prevention.
Average citizens suddenly found themselves on the frontlines of the HIV/AIDS epidemic, becoming leaders and activists.
“If it weren’t for the advocacy in HIV we would not be where we are today. Not just in HIV, but in many other diseases. The HIV advocacy community I think showed the way for people suffering from a wide variety of health conditions to demand better treatment – to demand faster results – to demand access to the latest information,” he said.
One of those activists is Noerine Kaleeba, one of Uganda’s --and perhaps one of Africa’s -- best known champions for advocacy. She began seeing evidence of the disease while working as a hospital therapist in 1983.
“It was about that time that I think Uganda began to really realize that we were really sitting on a catastrophe,” she said.
All she knew at the time, she said, was that a viral disease was spreading, and in particular among, sexworkers. Kaleeba saw a young man in the hospital who had been ravaged by the disease. She reacted the way many people did back then.
“I felt very afraid for myself. I did not touch him. A year later my own husband was diagnosed with AIDS,” she said.
That was 1986 and suddenly Kaleeba and her family were thrust into the middle of the epidemic. Her husband Christopher was diagnosed with late stages of the disease while he was a student in Britain. Kaleeba learned about it by a telegram from the British government.
“My initial reaction,” she said, “was denial because all I knew about AIDS at the time was that it was a disease that affected bad people – people who were promiscuous. And I knew for a fact that neither I nor my husband had been promiscuous.”
She had heard that AIDS was also associated with gay men in San Francisco, but Christopher had never been there. But Kaleeba said that how he became infected was less important than caring for her husband. Kaleeba says she didn’t look for blame, she looked for solutions.
That led to the founding of TASO, Uganda’s premier AIDS- related NGO. It started as a support group for her family and others affected by AIDS.
“You know, pray together, cry together, learn from each other how we can live, especially live with a stigma.”
She said those who were infected were being neglected by their families and the healthcare system. An HIV diagnosis was a death sentence.
Kaleeba was tested for HIV. The initial test showed no infection, but doctors told her she probably would test positive in several months. She would not take another test until many years later.
In the early days of TASO, no antiretroviral drugs were available. So, HIV positive people were given counseling and much needed emotional support. Many whose immune systems had collapsed were succumbing to opportunistic infections. TASO members paid out of their own pockets for medicines to treat them. That nearly broke the organization.
Fourteen people joined Kaleeba and her husband in founding TASO. Twelve of them, including Christopher, died within a few years. Kaleeba said it seemed like she was attending a funeral every week. But TASO focused on the living.
“If you are not dead, you are living. And that’s where the slogan of “living positively” came from. We wanted to emphasize to people that if you are still living until you’re dead,” she said.
And when people did die, they were able to die with dignity.
TASO eventually grew into a major force in the battle against HIV/AIDS. Kaleeba said antiretrovirals changed the face of the epidemic. The drugs save lives. But she said thousands more in Uganda, who need the drugs, still don’t have access to them.
Kaleeba eventually did learn her HIV status in 2006. She tested negative.
She’s retired now, but her career included 10 years with UNAIDS. Uganda and Senegal are considered the first African countries to take the disease very seriously.
In 2000, South Africa became the first developing country to host the International AIDS Conference. Professor Gerry Coovadia was the co-chair of the Durban meeting. He reflected on the conference in 2010 on its 10th anniversary.
“Without exaggerating its impact, it certainly is considered one of the landmark AIDS conferences in the world, and that includes those which have been held recently. And I think the reason it is considered a landmark conference is that quite a number of issues came to the fore,” he said.
Perhaps the biggest controversy was then-president Thabo Mbeki’s refusal to accept that a virus was the sole cause of AIDS. Many scientists had signed the Durban Declaration urging him to accept the evidence.
“It seemed to me that we could not blame everything on a single virus. It seemed to me also that every living African, whether in good or ill health, is prey to many enemies of health that would interact one upon the other in many ways within one human body,” said Mbeki.
Many activists and scientists said Mr. Mbeki’s position delayed vital services and treatment – a delay that cost many lives.
Former South African president Nelson Mandela attempted to end the debate over the cause of AIDS when he addressed the closing of AIDS 2000.
“In the face of the great threat posed by HIV/AIDS we have to rise above our differences and combine our efforts to save our people,” he said.
The Durban conference also addressed the issue of AIDS orphans. It was predicted the epidemic would create millions of them. Several spoke at the conference, including this 12 year old girl.
“I didn’t know that my mother was HIV. I was, you know, living with her not knowing all those things. And then she died. You know, it was so much hard for me growing up without a mother and – my father died a long time ago. And now it’s my brother. He’s dying, too, and I don’t know what to do,” she said.
Many organizations formed to help orphans, including the Nyumbani in Kenya and the FXB Foundation.
Access to affordable antiretroviral drugs is growing in Africa due in large part to PEPFAR – The President’s Emergency Plan for AIDS Relief, the Global Fund to Fight AIDS Tuberculosis and Malaria, and the Clinton Foundation. But it was a long and hard-fought legal battle in South Africa that opened the door.
In 2001, in a landmark case, nearly 40 pharmaceutical companies ended their challenge to a law that allowed cheaper versions of AIDS drugs to be sold. The case led to a national treatment plan in the country with the highest HIV rates of any nation. However, that took another legal battle this time against the government. Zachie Achmet and his Treatment Action Campaign led that fight.
Mark Heywood worked closely with him and spoke to VOA in 2009.
“It confirms that the issue around access to essential medicines is considered a premier human rights question at this point in the world’s history. And that’s an important message to send to every government of the world,” he said.
The International AIDS Conference, the world’s largest AIDS-related gathering, is being held in Washington, D.C. from July 22nd to the 27th.