Nozipho Bhengu’s death shows the urgent need for science, truth, leadership and personal responsibility to lead the HIV and AIDS response.
The Treatment Action Campaign (TAC) regrets the premature and unnecessary death of Nozipho Bhengu (32), daughter of ANC leader Ruth Bhengu. We express our condolences to her family and friends.
The death of Nozipho is a tragedy that goes beyond her family. She was courageous. As one of very few middle-class and African people who chose to live openly with HIV, Nozipho promoted openness. She had the means to afford the best medicine, care and nutrition. It is highly likely that she would still be alive and well today if she had chosen to take antiretroviral treatment when she developed AIDS. Her death reminds us how important it is for friends and families of people with HIV to help them get the best available medicine and medical advice, based on the best available science.
Tragically, Nozipho chose to follow the AIDS denialist Tine van der Maas. She believed that Van der Maas's garlic concoction would treat AIDS and save her life. Van der Maas held her up as a model patient. With this direction, Van der Maas betrayed her trust and was culpable for the death of Nozipho. She is also partially responsible for the death of Khabzela and others whose deaths have not been made public, who died silently.
TAC and others have previously exposed the deaths on the unlawful experiment of Matthias Rath, a vitamin and drug company salesman. Rath pretends to have the interests of Africans with AIDS at heart. We and others have also exposed the illegal activities of Van der Maas. In her book about Khabzela, Liz McGregor describes the role of Van der Maas in his death. We have in recent days received disturbing, but as yet unconfirmed, reports about people who have used Ubhejane, another unproven remedy being marketed as a “viable” treatment to people with AIDS
TAC respects people’s right to choose the course of treatment they follow according to their belief. But this is only part of the story. People with life-threatening illnesses are vulnerable and desperate. This despair allows for families, elders, leaders, opinion makers and health professionals to influence “choices”. We urge individuals and families to take informed decisions based on scientific evidence. While certain herbal and other remedies may alleviate AIDS symptoms, no evidence yet exists to show they are equally safe and effective alternatives to antiretroviral medicines. This is what people must know and base their HIV/AIDS treatment decisions on. The science on antiretrovirals is established.
Nozipho Bhengu attended a few TAC meetings and left our movement years ago. She succumbed to public, family and denialist pressure. Perhaps, we could have done more. But, we are not government with the resources of the state and the ANC. She had a personal responsibility and choice but these were limited by her environment. We will step up our treatment literacy and campaign against denialism. This is the duty of every leader and organization in civil society.
The activities of Tine van der Maas, Matthias Rath and those who market Ubhejane continue unabated. They mislead people like Nozipho with deadly consequences. It is illegal in South African to make false claims about medicines and to prescribe medicines for a purpose for which they are not registered. It is also illegal to conduct medical experiments on people without the approval of the Medicines Control Council or to practice as a medical doctor or nurse without being registered.
There is immense confusion throughout the country about HIV, its prevention, treatment and care. More than ever, South Africa needs the rollout of a sustained mass public information, prevention and treatment literacy programme. And more than ever, we need President Thabo Mbeki and the Minister of Health to speak unequivocally to the stated government policy on HIV/AIDS. This includes prevention, antiretroviral treatment and food.
South Africa needs leadership and truth more urgently than ever before. The Minister of Health must condemn the activities of AIDS denialists and charlatans selling unproven remedies. The Minister must take steps to have Van der Maas, Rath and those who market Ubhejane as an AIDS treatment arrested. This is the only way the Minister can renounce her own culpability in the deadly confusion and the preying on poor and desperate people with AIDS by these charlatans. We also call on the German and Dutch governments to take legal action against Rath and Van der Maas.
On 20 May 2006, the Lancet, one of the world's most authoritative medical journals, called for an HIV Truth and Reconciliation Commission in South Africa. The TAC agrees with this call. In 2006, our country continues to face a crisis of infection, illness and death as 1,500 new HIV infections and 900 AIDS deaths occur on a daily basis. Our country needs truth, science and political leadership to break the grip the epidemic has on our country. Without this, thousands of lives will continue to be lost and many --particularly poor-- people, will not reap the benefits of freedom promised by our democracy.
[END OF STATEMENT ON NOZIPHO BHENGU]
Reprinted from News24
06/05/2005 08:51 - (SA)
Pietermaritzburg - A Pietermaritzburg woman with full-blown Aids has voiced her support for Health Minister Manto Tshabalala Msimang's controversial lemon and garlic diet.
Nozipho Bhengu, 31, said she had been on the diet for the past three years and "It works, I'm the scientific proof."
Bhengu's HIV-status became national public knowledge in 2001 when her mother, Inkatha Freedom Party MP Ruth Bhengu, told the National Assembly about her daughter's HIV status.
Bhengu said at first nutrition did not mean much to her but, she became so sick that her CD4 count had dropped to 55 and she thought she was going to die. That was when Tshabalala Msimang re-introduced her to Tina van der Maas an ex-colleague and the person behind the minister's nutrition plan.
At that stage Bhengu had been to several doctors, her liver was inflamed and she had a growth on her spleen. Bhengu said she had also been on antiretrovirals for a week but her body could not handle the medication.
She then went onto the diet formulated by Van der Maas and "within three months I could see results."
Although she was still considered to have full blown Aids because of a CD4 count of 134 "I am productive" and said she was completely healthy.
'She is a leader'
"I don't care what people say about the minister, she is a leader and a leader is always ahead. In five years time they will know what she is talking about" said Bhengu.
On Thursday Tshabalala-Msimang again told the media: "ARVs do not cure and they do have side effects. I do not know of any side effects of eating proper food."
Last month at the launch of her department's ethical guidelines for Aids research, the minister showed a documentary video in which Van der Maas showed bedridden Aids patients who had returned to "normal health" after two to three months on the programme.
Van der Maas, a nurse who has been working with South African HIV/Aids sufferers since 1989 remains confident that the diet is "affordable, available and sustainable" and says she has treated over 40 000 people since 1995.
"With this wellness programme you can reverse the condition of someone with full-blown Aids to an HIV-positive status," said Van der Maas
[END OF AIDS PATIENT BACKS MANTO]
Reprinted from Health-e
Health Minister promotes nutritional alternative to ARV roll-out
by Kerry Cullinan
Sick hospital patients in six state hospitals are given garlic, lemon and olive oil by controversial nutrition nurse Tine van der Maas
Health Minister Dr Manto Tshabalala-Msimang has for the past three years been promoting an untested diet for people with AIDS-related illnesses, and now believes that it could be an alternative to antiretroviral (ARV) drugs.
As the AIDS epidemic intensifies, thousands of sick and desperate people have turned to controversial nutrition nurse Tine van der Maas who advocates that the immune system can be restored through a diet based on garlic, lemons, olive oil and a supplement called Africa’s Solution.
Tshabalala-Msimang has allowed Van der Maas access to public hospitals and clinics countrywide to give her as-yet-untested diet to desperately sick hospital patients.
The Minister recently told a press briefing that people living with HIV had “three choices”: nutrition, micronutrients or antiretroviral drugs.
“Maybe someone can stand up and function if they have antiretrovirals. With nutrition they are functional and there is no information that it has side effects ... Micronutrients boost the immune system,” she said.
While there is widespread consensus that good nutrition is an essential part of any HIV/AIDS treatment plan, medical experts believe it should be offered to complement ARV treatment.
The Treatment Action Campaign’s (TAC) Nathan Geffen accused Van der Maas of giving people “false hope” and said “it is absolutely unethical to promote nutrition as an alternative to antiretrovirals, as ARVs are the only thing scientifically proven to reverse the course of AIDS”.
Van der Maas says that she was able to conduct “trials” with patients at St Barnabas Hospital in the Eastern Cape, Temba Hospital in Mpumalanga, Makopane Hospital in Limpopo, Bloemfontein Provincial Hospital in the Free State and Kimberley Provincial Hospital in the Northern Cape.
Confirming the list of hospitals, Health Director-General Thami Mseleku, Van der Maas had been “invited by MECs of Health to do voluntary work with AIDS patients” at these hospitals and “various clinics in all provinces”.
This was after Tshabalala-Msimang arranged for Van der Maas to address a meeting of all provincial health MECs.
However, the Department appears not to have documented the effects of the diet on its patients as Mseleku said such documentation was only available from Van der Maas.
In addition, he said the findings from a clinical trial on the effects of Africa’s Solution on 50 patients would only be presented at next month’s national AIDS conference by Dr Elmien van der Heever from Bloemfontein Technikon/University.
Tshabalala-Msimang has also referred a number of private patients to Van der Maas, mostly from “top families in the ANC and government”.
Van der Maas and Winston Wilken, who sells the Africa’s Solution supplement, have also been working with top military officials, retail stores and corporations.
As further proof of the Minister’s support, Dr Cyril Khanyile, a medical advisor in the Health Department’s HIV/AIDS Directorate, is assisting and advising Van der Maas.
Professor Nigel Rollins, chairperson of the World Health Organisation’s (WHO) technical advisory group on nutrition and HIV/AIDS, said he would be “delighted” if the diet worked, but that “any product should be doubted until it is properly tested”.
“It is irresponsible to go out and make vast claims if your product has not been tested. In science, there is an agreed on way of testing products and diets. One thing the government could do would be to fund a study on Van der Maas’s diet that is conducted by an objective set of scientists,” said Rollins.
Professor Ronald Green Thompson, head of health in KwaZulu-Natal, confirmed that his department was looking into testing the diet.
“The anecdotal evidence about Van der Maas's project is sufficiently strong for the department to explore it further and also undertake scientific evaluation,” said Green Thompson. “The department will identify role players who will be able to add value to the project.”
Harvard infectious diseases expert Dr Krista Dong, who established iThemba HIV/AIDS clinic at St Mary’s Hospital outside Durban, said that while good nutrition could slow the progression of HIV, it could not replace ARVs.
“At iThemba, before starting patients on ARVs, we would try to stabilise them by treating the underlying opportunistic infections such as TB and ensure they had sufficient food. There was a dramatic improvement in energy, weight gain and general well being within a few days just from doing so.
“However, these gains cannot be sustained once HIV has progressed towards AIDS. At that point, ARVs are critical to bring down the patient’s viral load and increase the chance for a successful and sustainable response to the TB and other medications.”
For four months between last October and February, Van der Maas was based in KwaNgcolosi outside Durban at a project run by a Belgian, Kim Cools.
Van der Maas, who was only paid for expenses by the health department, says she spent her “last money” filming the effect of the diet on almost 400 people at KwaNgcolosi.
In the video, parts of which were screened recently on SABC’s Channel Africa, Van der Maas claims that the diet had a marked impact on a range of afflictions including “cataracts, epilepsy, diabetes and acquired immune deficiency symptoms”.
However, TAC’s Geffen says that the video “undermines the whole of medical science by making unsubstantiated claims about the effects of the diet on a wide range of illnesses”.
Tshabalala-Msimang visited Van der Maas twice while she was at KwaNgcolosi, on one occasion bringing with her health officials including Mseleku and Green-Thompson.
Van der Maas’s diet is based on the use of garlic and ginger to treat infections and olive oil, lemon juice and peel to detoxify the body. She then advocates ProNutro which contains selenium and a supplement called Africa’s Solution, which contains African potato extract and vitamins.
The positive effects of a Mediterranean diet high in garlic and olive oil have been established by numerous scientific studies over many years.
In addition, a number of studies presented at the recent WHO consultation on AIDS and nutrition showed that certain vitamins, minerals and trace elements helped to slow the progression of HIV.
Nozipho Bhengu, daughter of ANC MP Ruth Bhengu, has been following Van der Maas’s diet for the past two years. When she started, she was hospitalised with a CD4 count (measure of immunity) of 55 and adverse reactions to ARVs. She stopped the ARVs, followed the diet and her CD4 count increased to 135 over three months.
“I have been concentrating on the lemon juice, olive oil, garlic, ginger and African Solution and it has worked. Now I am working. I am normal just like anybody else,” says Bhengu.
Criselda Kanana, who was diagnosed with HIV in 1997 and has an AIDS talk show on Khaya FM, says she has been following Van der Maas’s diet for a number of years and has never had a CD4 count below 600.
Kanana believes more people diagnosed with HIV need a “proper wellness programme instead of being told the are going to die”.
But any possible benefits of Van der Maas’s programme are being overshadowed by the fact that it is being used by AIDS dissidents (who don’t believe HIV causes AIDS) to gain access to communities in order to discredit ARVs.
Having failed in their campaign to stop government from introducing ARVs in the public sector, key AIDS dissidents have regrouped around Van der Maas’s programme and are using it as an entry-point to persuade communities to reject “toxic” ARV drugs.
Despite having worked with AIDS patients for 20 years, last year Van der Maas expressed doubts about the existence of HIV.
She has established links with former magistrate Anthony Brink, the country’s most outspoken AIDS dissident, and the Rath Foundation, which assisted with production costs of her video.
Dr Matthias Rath, who sells vitamins and has been running an advertising campaign against ARVs, is currently involved in a court case with the TAC, which has accused him of libel.
Brink, who now works for the Rath Foundation, was instrumental in getting Van der Maas to KwaNgcolosi by introducing her to Kim Cools, the Belgian AIDS dissident who was running a environmental programme in the area.
Cools believes that there is no role for medicine as “a healthy body should be able to cure itself”.
However, Van der Maas insists that she never tells people to stop their medication without checking with their doctor.
Khanyile, who says he has worked with AIDS patients in the US for 20 years, says he is against a “one size fits all” approach to health.
“If a patient on ARVs comes to me and they don’t have any problems, I tell them to stay on the ARVs,” said Khanyile.
While Khanyile was not prepared to “commit one way or the other” on whether HIV was “simply a particle or a true virus”, he said he believed that there were a range of other players in immune deficiency including “the herpes virus, genetics, environmental issues such as poverty and nutritional deficiencies”.
When asked whether they would be prepared to take part in a scientific study on the diet, Khanyile said: “We don’t want to be tied up with scientists in a laboratory. But we would be prepared for the diet to be given to patients in an academic hospital where the benefits can be monitored by an independent, neutral person.”
Dr Ali Dhansay, director of the Medical Research Council's Nutritional Intervention Research Unit, welcomed the fact that the proponents of the diet were amenable to having it tested.
"There are a range of methods of testing that don't necessarily involve only a laboratory. What would need to happen is for the role players to sit down and develop a protocol identifying what the research questions are, and the appropriate study design to answer these questions," said Dhansay.
[END OF NUTRITION NURSE]
>From ANC Today 24 May 2001
The important role of the family in responding to HIV/Aids was highlighted in parliament this week by ANC Member of Parliament Ruth Bhengu, who spoke of the experience of her daughter, Nozipho, who had tested positive for HIV.
Bhengu's story reflects the experiences of many South African families who are having to come to terms with the traumatic consequences of HIV/Aids. "I want to tell you about the feelings and the heavy load that the family of an HIV positive person carries every day."
Bhengu spoke of the initial shock of being told by her daughter that she had tested positive for HIV, and the family's efforts to deal with the emotional impact of the condition. She said her daughter's situation was far better than many other South Africans, who lived in poverty and did not have the same kind of support.
"A person in the informal settlement - without a plate of food to eat, no warm blanket to cover her body, no psychological counselling; no soap to wash her body and clothes, who is ignorant about HIV and Aids, who cannot access information - is far worse than Nozipho," she said.
She cautioned against believing that anti-retrovirals represented a complete solution to the disease. A holistic programme was needed that would take care of the poverty-related problems experienced by people living with HIV.
Bhengu's spoke not only on the impact of HIV/Aids on the family, but on the value of family support in tackling the condition. Many people living with HIV/Aids have spoken of the tangible difference which family support, care and understanding makes to their health and well being.
[END OF ANC TODAY STATEMENT]