HIV/AIDS: Key People

  Zackie Achmat

Leader of the Treatment Action Campaign (TAC), Zackie Achmat has become synonymous with the fight for antiretroviral treatment.

A former anti-apartheid and gay rights activist, Achmat tested positive for HIV in the early 1990s, prompting him to focus on HIV/AIDS activism.

In December 1998, Achmat co-founded the TAC, whose main objective was to campaign for affordable ARV treatment for HIV-positive people in the country. The TAC fights on two fronts — taking on the South African government's slow treatment response to the epidemic, and international pharmaceutical companies who charge high prices for antiretroviral drugs.

The TAC successfully forced the government to make mother-to-child-transmission prevention treatment available in the public sector through a high court decision. It also forced government's hand in providing public sector antiretroviral treatment by leaking an internal government report that showed treatment would be cost-effective as it would reduce public hospitalisation costs.

Achmat became famous for not accepting antiretroviral treatment until all South Africans could obtain them — even declining a request from Nelson Mandela to return to treatment. However, he resumed treatment in late-2003, shortly before the South African government announced a public sector ARV rollout.

Achmat was voted 61st in the Top 100 Great South Africans and was selected as one of TIME Europe's "Heroes of 2003". He was winner of the inaugural Desmond Tutu Leadership Award in 2001 and the Nelson Mandela Award for Health and Human Rights in 2003.

Together with the TAC, he was nominated for a Nobel Peace Prize in 2003.

Also see:

Mangosuthu Buthelezi

Quotable Quotes

"I reach out to all the other people who died of HIV/AIDS. My son did." — Mangosuthu Buthelezi, at the end of a tribute to his 53-year-old son, Prince Nelisuzulu Benedict Buthelezi, who died in April 2004 (source).

"If we rely on a piece of rubber for our salvation, then we are already doomed." — Mangosuthu Buthelezi, talking to the Cape Town Press Club, while calling for a return to traditional values, including abstinence until marriage (February 9, 2005).

Leader of the Inkatha Freedom Party, Mangosuthu Buthelezi has been outspoken on HIV/AIDS policy in South Africa.

Perhaps his most prominent contribution to the fight was declaring publicly that his son, Prince Nelisuzulu Benedict, had died of AIDS in 2004.

His declaration was seen by HIV/AIDS activists as a breakthrough in the destigmatisation of HIV/AIDS, especially in his home province of KwaZulu-Natal.

In August 2004, Buthelezi warned Parliament over complacency. "Only the most naive can continue to believe that they are not going to be directly or indirectly affected by HIV/AIDS, because of its being allegedly limited to the poorer reaches of our nation, or those with particular sexual orientations."

"HIV/AIDS has placed me on my knees and destroyed my family, in spite of the lifestyle stringently maintained by my wife and I and the social status we enjoyed."

Edwin Cameron

Quotable Quotes

"Amidst the poverty of Africa, I stand before you because I am able to purchase health and vigour. I am here because I can pay for life itself."  — Edwin Cameron, speaking at the 13th International AIDS Conference, Durban, South Africa, July 10, 2000. Read full speech.

Supreme Court of Appeal Justice Edwin Cameron is currently the only person in a prominent position in public office to acknowledge having HIV/AIDS.

He has been living with the virus since 1986 and started anti-retroviral medication in 1997.

He is an outspoken advocate of HIV/AIDS antiretroviral treatment and made a compelling stand for it at the 13th International AIDS Conference in Durban, in 2000, during a time of political complacency over the issue.

He recently published Witness to AIDS, a "part-memoir, part compelling analysis" of his struggle with HIV/AIDS in the South African situation.

Nelson Mandela calls him "one of South Africa's new heroes".

Cameron drafted the Charter of Rights on AIDS and HIV in 1992, co-founded the AIDS Consortium (a non-governmental organisation working in the field of HIV/AIDS), which he chaired for three years, and was the first director of the AIDS Law Project.

Since 1998 he has chaired the Council of the University of the Witwatersrand. He is the patron of the Guild Cottage Children's Home, of the Sparrow's Nest Hospice, of the Community AIDS Response (CARE) and of the Soweto HIV/AIDS Counsellors' Alliance (SOHACA).

In 2000, he received the Nelson Mandela Award for Health and Human Rights. In September 2002, the Bar of England and Wales honoured him with a special award at its annual conference in London for his "contribution to international jurisprudence and the protection of human rights". He received the San Francisco AIDS Foundation's Excellence in Leadership Award for 2003. In October 2003 he was elected an honorary Fellow of Keble College, Oxford.

Also see:

Nkosazana Dlamini-Zuma

Nkosazana Dlamini-Zuma was the first health minister in South Africa after the 1994 elections. Her position as health minister was dogged with controversy.

In 1995, the health department commissioned Sarafina II, a R14-million lavish musical produced by Mbongeni Ngema that was criticised for its mixed messages, overpriced budget and the fact that relatively few South Africans ever saw it. The play contract was cancelled in 1996 after irregularities were identified.

Although Dlamini-Zuma tried to deflect blame by claiming the musical had been funded by the European Commission, the commission denied ever sanctioning the play (source).

In 1997, Dlamini-Zuma championed a controversial experimental anti-AIDS drug, Virodene, and allowed researchers to address Cabinet with preliminary findings that were not controlled or peer-reviewed. Virodene was later found to have no proven antiviral effects.

In a controversial move which had the potential to provide access to cheap antiretroviral drugs, but angered pharmaceutical companies, Dlamini-Zuma promoted the amendment of the Medicines and Related Substances Control Amendment Act, allowing compulsory licensing that would enable the government to use a patent without the consent of the patent-holder in certain cases (Read more in Treatment factsheet). This opened up the potential for widespread generic antiretroviral distribution in South Africa.

Although the amendment came into effect in 1997 — and was subsequently confirmed as legal in court after a challenge from the South African Pharmaceutical Manufacturers' Association (PMA) — the SA government did not immediately exercise it to make generic antiretroviral drugs available to South Africans.

In 1998, the health department under Dlamini-Zuma announced that it would not make AZT available to pregnant women (source), a controversial decision which many in the HIV/AIDS arena saw as regressive. The issue reared its head again during the term of the next health minister, Manto Tshabalala-Msimang. AZT has since been rendered obsolete by more advanced antiretrovirals, such as Nevirapine.

Dlamini-Zuma was switched from her health minister post to minister of foreign affairs in 1999.

Nkosi Johnson

Quotable Quotes

"You can't get AIDS by hugging, kissing, holding hands. We are normal. We are human beings. We can walk, we can talk ... We have needs just like everyone else. We are all the same." — Nkosi Johnson, in a speech at the 13th International AIDS Conference, July 9, 2000.

South Africa's youngest HIV/AIDS activist, Nkosi Johnson was a symbol of hope in the late 1990s.

Johnson was born HIV-positive in 1989. He was adopted by Gail Johnson at three, after his mother, Nonthlanthla Daphne Nkosi, could not look after him due to her worsening health.

Johnson first appeared in the public eye in 1997, when a primary school refused to accept him because of his HIV status.

The school later reversed its decision and the South African government later formulated legislation in response to Johnson's story.

His largest impact came at the 13th International AIDS Conference held in Durban in 2000, when he delivered a heartfelt keynote speech that called for the destigmatisation of the disease and the introduction of the PMTCT programme (read speech).

"You can't get AIDS by hugging, kissing, holding hands. We are normal. We are human beings. We can walk, we can talk ... We have needs just like everyone else. We are all the same," he told a 10,000-strong audience in rapt silence and millions of television viewers around the world.

His health worsened later that year. On 29 December 2000 Johnson collapsed on a visit to Nkosi's Haven, a home for HIV-positive women and their children set up by Gail Johnson, and suffered several seizures. He slipped into a semi-coma and died on June 1, 2001, aged 12.

In his honour Gail Johnson has opened the Nkosi Johnson AIDS Foundation which supports peopling living with HIV/AIDS, raises awareness and destigmatises HIV/AIDS in South Africa.

Adam Levin

Quotable Quotes

“I have no idea how long I’ve been HIV-positive but I have had AIDS for the past two years.” Adam Levin quote on the cover of Aidsafari

Adam Levin is in his late-30s a South African author, journalist and fashion guru. He's also white, gay, and has HIV/AIDS.

His third book, Aidsafari, is an autobiography in which he discusses very frankly, his status and the trials of living with AIDS on a day-to-day basis. According to a review on HIVAN, in his book he tells of how “he experienced life-threatening opportunistic infections and debilitating side effects from the medication. He was bedridden for months, tortured by nerve pains in his feet, he lost his hair and teeth, required dentures at 35, had tuberculosis, cancer, chemotherapy, a catheter in his urethra, and even more unpleasant conditions that make some chapters difficult to read.”

He is the winner of two Mondi Gold Awards for Journalism.

Nelson Mandela

Quotable Quotes

"AIDS is no longer just a disease, it is a human rights issue." - Nelson Mandela, at the first 46664 concert held at Greenpoint Stadium, Cape Town (29 November 2003).

"By all accounts, we are dealing with the greatest health crisis in human history. By all measures, we have failed in our quest to contain and treat this scourge." — Nelson Mandela talking about the HIV/AIDS pandemic, at the opening of the Second International AIDS Society (IAS) Conference on HIV Pathogenesis and Treatment (July 14, 2003).

"The more we lack the courage and the will to act, the more we condemn to death our brothers and sisters, our children and our grandchildren. When the history of our times is written, will we be remembered as the generation that turned our backs in a moment of a global crisis or will it be recorded that we did the right thing?" — Nelson Mandela, at 46664 Arctic, in Tromso, Norway (11 June 2004).

"AIDS today in Africa is claiming more lives than the sum total of all wars, famines and floods and the ravages of such deadly diseases as malaria ... We must act now for the sake of the world." — Nelson Mandela, in a closing address at the 14th International AIDS Conference in Barcelona, Spain, 2004.

Former South African President Nelson Mandela has been instrumental in raising global awareness of HIV/AIDS.

Although relatively quiet on the HIV/AIDS front during his presidency (1994-1999), Mandela has since become a global voice in the fight against HIV/AIDS.

His most prominent contribution is arguably the music-led HIV/AIDS awareness campaign, 46664, named after his prison number during his imprisonment on Robben Island.

Mandela has financed various HIV/AIDS projects through the Nelson Mandela Foundation and Nelson Mandela Children's Fund — ranging from scientific surveys to programs for AIDS orphans.

On 6 January 2005, Mandela announced that his last surviving son, Makgatho Mandela, had died of AIDS.

"Let us give publicity to HIV/AIDS and not hide it, because the only way of making it appear to be a normal illness, just like TB, like cancer, is always to come out and say somebody has died because of HIV," Mandela said shortly after his son's death.

His most notable HIV/AIDS speeches include the closing addresses at the 13th and 14th AIDS conferences in Durban, South Africa, in 2000, and in Barcelona, Spain, in 2004.

Also see: ANC Profile: Nelson Mandela

  • Closing Address at the 13th International AIDS Conference in Durban, 2000.
  • Closing address at the 14th International AIDS Conference in Barcelona, Spain, 2004.

Thabo Mbeki

Thabo Mbeki. Photo: Tara Turkington

As South African president during the steep rise of the HIV/AIDS pandemic in South Africa (from 1999 to present), Thabo Mbeki's role has been subjected to intense scrutiny at every turn.

His first few years as deputy president were uneventful. He headed the Inter-Ministerial Committee on HIV/AIDS, established in 1997 and replaced in 2000 by the SA National AIDS Council.

He also launched the Partnership Against AIDS in October 1998, saying, "For too long we have closed our eyes as a nation, hoping the truth was not so real" and that HIV/AIDS is "carried and transmitted by human beings".

Mbeki's first controversial move came in 1997 when he promoted the cause of Virodene, an experimental antiretroviral drug that has since been proved to have no antiviral effects.

By October 1999, Mbeki's distrust of Western medicine and conventional science had become apparent. Responding to pressure for public sector antiretroviral treatment — particularly with respect to the prevention of mother-to-child transmission — Mbeki called for an investigation into the toxicity of the then prominent antiretroviral drug, AZT.

In 2000, Mbeki established The Presidential Advisory Panel on AIDS, to investigate and discuss, among other things, whether HIV causes AIDS. Just under half of the panel members were AIDS dissidents, according to the respected scientific journal, Nature.

But by mid-2002, Mbeki had publicly distanced himself from HIV/AIDS dissidents and refrained from making public comments against official policy. But in 2003, debate reignited over Mbeki's stance when he told the Washington Post, "Personally, I don't know anybody who has died of AIDS."

Mbeki has been very quiet on HIV/AIDS in recent years, and is reluctant to speak about antiretroviral therapy.

Also read: Infected by toxic ideas, by Kerry Cullinan.

Phumzile Mlambo-Ngcuka

Phumzile Mlambo-Ngcuka. Photo: Tara Turkington

Phumzile Mlambo-Ngcuka was appointed as deputy president of South Africa on 22 June 2005, after former Deputy President Jacob Zuma was relieved of his duties following charges of corruption being laid against him.

As the former minerals and energy minister, Mlambo-Ngcuka had to face high HIV/AIDS prevalence in the mining sector. She is a supporter of HIV/AIDS educational programming in South Africa, and supports a pragmatic approach to HIV prevention schemes.

In an interview with SABC News on 26 June 2005, she said that her efforts to fight HIV/AIDS would focus on developing the antiretroviral rollout as an appropriate response to the epidemic.

Manto Tshabalala-Msimang

Manto Tshabalala-Msimang. Photo: Tara Turkington

Sometimes referred to as "Dr. No" because of her stubbornness regarding antiretroviral treatment, South African Health Minister Manto Tshabalala-Msimang is notorious for her controversial views and slow action in most areas of HIV/AIDS prevention, treatment and care.

Tshabalala-Msimang was installed as health minister in President Thabo Mbeki's Cabinet in June 1999 and soon gained a reputation for her alternative — some would say dissident — views on HIV/AIDS.

Tshabalala-Msimang has consistently supported Mbeki's views on HIV/AIDS, including his distrust of the widely supported antiretroviral drug AZT in 1999 and his questioning of conventional HIV/AIDS science in 2000.

She has championed a diet of raw garlic, lemon peel, olive oil and beetroot to fight HIV, and has often questioned the use of antiretrovirals because of their side-effects, despite their proven efficacy.

The Treatment Action Campaign has often taken Tshabalala-Msimang to court in an attempt to force her to address HIV/AIDS treatment issues, including the prevention of mother-to-child transmission, public sector antiretroviral treatment, and her support of controversial vitamin proponent Matthias Rath (see treatment timeline).

A consistent criticism of her department is the slow rollout of antiretroviral treatment in South Africa, since Cabinet approved the Operational Plan for Comprehensive Treatment and Care for HIV/AIDS (1.9MB) in late 2003. By March 2005 about 104,600 people were being treated with ARVs in South Africa, out of a WHO-estimated 837, 000 who needed the treatment (Dec 2004).

David Patient

Quotable Quotes

“In any holocaust, war, plague or pandemic, there were always one or two people who lived to tell the story ­and why couldn't one of those people be me? Somebody had to stay alive to tell the story for all those who had died with their song still in them, unsung.” - David Patient, in an interview with Jeanne Viall.

David Patient, South Africa’s longest-living HIV-positive person is a man of rare courage and strength. Patient was first diagnosed with the disease on his 22nd birthday in 1983 while living in the United States. He has been living with the virus for 23 years.

Shortly after receiving this news Patient bought a coffin, wrote a eulogy and waited for death.

For 11 years after his diagnosis Patient was examined and studied by top HIV/AIDS researchers, including all three of the co-discoverers of the virus, to find out why his visors was not developing to AIDS.

Patient has been on anti-retroviral treatment before but decided it didn’t agree with his body and stopped. He now relies on a good diet and exercise to keep healthy.

Although he is no longer an active HIV/AIDS activist, Patient has been involved with various projects such as the National AIDS Council of Mozambique, on a programme called Vida Positiva/Positive Living, to help the fight against HIV/AIDS and educate people on how to live with it.

In a recent article in the Sunday Times, Patient sums up his attitude towards his status very simply, “I am not an ‘AIDS sufferer’ or an ‘AIDS victim’. I live with AIDS. I’m not my virus… There is more to me than my HIV status.”

Also See:

Desmond Tutu

Archbishop Emeritus Desmond Tutu is a former Nobel Peace Prize winner and a symbol of equality and reconciliation. He has also been an outspoken critic of the South African government regarding the issue of HIV/AIDS.

Quotable Quotes

"I would have hoped ... that we would invoke the same spirit, the same passion, the same commitment to fight this pandemic as we had when we were fighting against the scourge of apartheid." — Archbishop Emeritus Desmond Tutu, in an interview on SABC television on March 24, 2002 (source).

"We have the skills, expertise and resources. So for goodness' sakes, stop fiddling." — Archbishop Emeritus Desmond Tutu, reacting to the Pretoria High Court's decision in 2002, which compelled the government to provide Nevirapine to HIV-positive pregnant women (source). The government subsequently took the case to the Constitutional Court, where they ultimately lost. See Treatment Factsheet for more detail on this.

Tutu has been critical of the government's inaction in providing antiretroviral treatment to South Africans. In 2002, he said South Africa had been "fiddling" over the treatment issue and "engaging in academic discussions while people are dying" (source).

Tutu supports condom distribution despite his religious vocation, and was saddened by the election of the conservative Joseph Ratzinger as Pope Benedict XVI in 2005.

"We would have hoped for someone more open to the more recent developments in the world, the whole question of the ministry of women and a more reasonable position with regards to condoms and HIV/AIDS," Tutu said (source).

In 1984, Tutu received the Nobel Peace Prize in recognition of "the courage and heroism shown by black South Africans in their use of peaceful methods in the struggle against apartheid".

After South Africa's first multi-racial elections in 1994, President Nelson Mandela appointed Tutu to chair the Truth and Reconciliation Commission, investigating the human rights violations of the previous 34 years.

Pieter-Dirk Uys

Quotable Quotes

"After having had an apartheid government that killed people, we now have a democratic government that just lets them die." — Pieter-Dirk Uys (source).

South African actor and comedian Pieter-Dirk Uys is probably better known as his on-stage creation, a white tannie with a great sense of style and a sharp tongue, "Evita Bezuidenhout".

Uys' provocative mix of satire and slapstick has given South Africans reason to laugh at themselves for decades. He also made people think with searing criticism of apartheid — much to the ire of politicians at the time.

In 2001, Uys took on a new challenge — HIV/AIDS. He sent an email to Western Cape schools, offering an hour-long free show.

He has since spoken to more than half a million children in a frank and open manner about HIV/AIDS prevention, and has put together many shows dealing with the topic.

Jacob Zuma

Jacob Zuma. Photo: Tara Turkington

Although generally seen as a friend of the struggle against HIV/AIDS, former Deputy President Jacob Zuma has fallen from grace through a corruption scandal and, more recently, rape charges levelled at him by an HIV/AIDS activist.

In May 2005, Zuma told the National Assembly that nutrition "is not a substitute for appropriate treatment", in a subtle rebuke of Health Minister Manto Tshabala-Msimang's position.

In June 2005, Zuma was relieved of his duties as the deputy president of South Africa after being charged with corruption. Therefore, he no longer plays any official HIV/AIDS-related role, and has relinquished his chairmanship of the South African National Aids Council.

In December 2005, rape charges were laid against Jacob Zuma for allegedly raping a 31 year-old woman, who is believed to be an HIV/AIDS activist (source). Zuma has denied the charges.

Quotable Quotes

"Let me emphasise that our position is that nutrition is not a substitute for appropriate treatment, but prolongs good health and serves as a solid foundation that determines the success of other medical interventions." — Jacob Zuma, talking to the National Assembly on May 25, 2005.

Public Figures and HIV/AIDS

Also see Wikipedia's List of HIV-positive people including film stars, athletes, writers and artists, etc.