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Siyayinqoba Beat It! 2005 Episode 15 –
Unregulated experimentation
Matthias Rath, who has been discredited in a number of countries in Europe has set up the Dr Rath Foundation in South Africa and has claimed that his package of vitamins can reverse the course of AIDS. While there is no scientific proof that anything besides antiretrovirals (ARVs) can effectively treat HIV and AIDS by restoring our immune systems, the Rath Foundation has actively campaigned against the use of ARVs. Together with the Siyayinqoba support group, we learnt in this episode from the deaths of Ntombekhaya Kruthani and Noxolo Ngalo, and the views of doctors and activists experienced in HIV/AIDS work, of the disastrous consequences of taking the vitamin ‘cures’ offered by the Rath Foundation.
Jason Wessenaar: Kgotsong re ya le amohela mona ho Siyayinqoba Beat It! Support Group. {Sesotho} [Hello and welcome to the Siyayinqoba Beat It! Support Group.] My name is Jason. In the Siyayinqoba Support Group we are all living positively with HIV. Each week we get together to talk about issues that affects our lives with HIV. Siyayinqoba is your guide to living positively with HIV. If you are living with HIV or you have a friend, a family member or a partner who is HIV positive this program is for you. This week we are joined by Ntombozuko. We are talking about one of the most disturbing things to have happened that is affecting all of us and that is the confusion caused by the Rath Health Foundation in South Africa. Matthias Rath is a German vitamin manufacturer who has been discredited in various countries in Europe. He has come to South Africa to encourage people to use multivitamins as an alternative establishment to medicines including antiretrovirals. One of the most alarming claims made is that his vitamins can reverse AIDS to living healthily with HIV and that they are a solution to the AIDS epidemic. However there is absolutely no proof that anything other than antiretrovirals can do this. Siyayinqoba spoke to people who have been affected by the activities of the Rath Foundation. Let’s take a closer look.
The cost of unregulated experimentation
Khayelitsha, Cape Town
Nandipha Sgebenga: Mna ndingu-Nandipha Sgebenga ohlala e-Khayelitsha, ndiswelekelwe ngu-sister wam ongu-Ntombekhaya Kruthani, osweleke nge-27 ka-March ebulewe yi-HIV. Ngenye imini ndivela emsebenzini ndafika endixelela uba ufumene abantu abazamtrita apha endlini abafumene ekliniki e-Site B. ayingobantu abafumana e-Site B, ngugqirha othi ngu-Dr Rath. Dr Rath one-treatment ayityisa abantu aba-HIV positive, ibengu-1, 2 after two monthsbazibone bebhetele kwinyanga yesithathu. Bathi makangagoduki ngokuyana makahoyane ne-treamtent yakhe and then ayiyeke le yase-Site B, angazidibanisi zoyi-two ii-treatment. Ndathi ke mna kuba bendingakholi ukumjika into ayixelelwe yikliniki, ndathi ke mna azidityaniswa na ezipilisi ziyafana na, wathi ziyafana somnci nguyena gqirha ozondinceda lona ngoba uthi it’s only two months. Kwinyanga yesithathu wazibona ububhetele mna ke khange ndibubone ububhetele. Uqalise nje la-treatment yakhona, endaweni yoba abebhetele waye eba-weak worse, wa-end up esweleka. {isiXhosa} [My name is Nandipha Sgebenga. I live in Khayelitsha. My sister Ntombekhaya Kruthani passed away on the 27 March due to HIV. I came home from work one day and my sister said she had found some people who would treat her from home. The people allegedly had a clinic in Site B. I found out that these people were not from Site B. This was a doctor called Dr Rath. This Dr Rath gives HIV positive people his treatment for only one to two months and they are meant to feel better on the third month. They told her to stop the Site B (ARV) treatment and not to mix it with theirs. I didn’t want to stand in the way of what she had been told at the clinic in Site B, so I asked her if the two medications were the same and she said: “Yes” and that the one would help her best because she’d be better in two months. I did not see any improvement in her condition. She started on Rath’s treatment and instead of getting better she got weaker and weaker and ended up dying.]
Angelina: Bafike apha kwinyanga ka-April, bebesithi ukhona ugqirha ose-22 onceda abantu aba-HIV. Sithathwe sasiwa e-Dunoon kugqirha okuthiwa ngu-Rath. Ngeloxesha andixelelayo uphethe i-brown paper enepilisi. Ndibuze kuye yintoni le uyiphetheyo, athi ziipilisi endizinikwe pha kula-surgery. Ndazivula ezipilisi ndazijonga, zibhalwe take 10 tablets 3 times a day, which is a day 30 tablets. Kuba umntwana wam efuna impilo uzityile ezipilisi, uthe engazigqibi waxhuzula. Ndazama ukumsa kwii-private doctors, akaphila. Still ngoku seyexhuzula wathi keep on wazisela ngoba kaloku kuthiwa ziyayinceda i-HIV, ufuna uphila. {isiXhosa} [Some people arrived here in April, saying that there was a doctor in NY 22 who helps people who are HIV positive. My daughter was taken to a place called Du Noon and met a doctor called Rath. She came back with a brown paper packet with pills in it. I asked her about it and she said the pills were given to her by Dr Rath. When I looked at the pills, it said to take ten tablets three times a day. That means 30 pills a day, because my child wanted to get better she took the pills. But before she could finish them she became very ill. I tried taking her to private doctors but she didn’t get better. Even when she developed epilepsy, she continued with Dr Rath’s medication, because she was told that it would suppress HIV.
Nandipha Sgebenga: Before ebengumntu obekuthanda kakhulu ukutya, ebesithi noba ubona ntoni, uyiva nangeempumlo into ayithandayo enukayo ephekiweyo. Akutye ukutya futhi ayitye i-plate ayigqibe ngoku atya la-treatment yase-Site B but wathi kwaba aqalise la-treatment ka-Rath ndabona ngaye esitya i-banana qha ogqiba asele i-juice, atye iipilisi. Xxa ndimbuzayo uba zizosebenza kanjani iipilisi engatyi, wathi akakufuni ukutya. Uba ndimvusile ndamnika ukutya watya, ndimnyanzelise, ndimenzele ukutya, uzakutya atye ezapilisi, zibuye zonke ezapilisi zonke. Wa-weak ke waye eba-weak, utye only i-three weeks because uyiqale ngo-March, nge-27 ka-March wasweleka. Ndifila kabuhlungu kaloku because mhlawumbi ebezo-surviva u-Nora njengabanye abantu. Abantu aba-HIV baphilile and bakhona siyababona, baneminyaka eyi-13 oma-15 years umntu ephila ne-HIV yakhe. So ingathi kum uba ngaba khange azitye ezapilisi zika-Rath and nam bendizazi ezapilisi uzawuba worse a-end up esweleka. {isiXhosa} [She used to love food, she would smell something and ask: “What’s cooking?” She used to clean her plate when she was on the Site B treatment (ARVs), but after starting Rath’s treatments she would only eat a banana and drink juice. I asked her how the pills will work on an empty stomach and she would say she doesn’t want to eat. If I made her eat, she would throw it up along with the pills. She became weaker and weaker and this all happened in just three weeks, because she started Rath’s treatment in early March and died on the 27th. I feel so sad because she could have survived longer like others. Some people with HIV are living life; we see them everyday, and they live for 13 or 15 years with HIV. So I wish she hadn’t taken Rath’s pills, I wish I had known that by taking those pills, she would get sick and die so quickly.
Angelina: Uzisebenzisile ke ezipilis on and off, zange aphinde abe-right empilweni umntwana wam. Emane engu-on and off aquqe esbhedlele e-Jooste abuye, ndimse kwii-private doctors. Kuba ngoku egule emsebenzini nge-9 zika-October wayongena esbhedlele nge-12 on a Monday kuba yena ebebuyisiwe emsebenzini ngeCawe. Ndamsa kwagqirha kwathiwa makaye esbhedlele kulapho asweleke khona. {isiXhosa} [She kept taking Rath’s pills but her health was on and off. She was getting sicker, going in and out of Jooste Hospital all the time, even going to private doctors, until the 9th of October 2005 when she got sick at work. On Monday the 12th of October I took her to Groote Schuur Hospital where she died. I feel very bad because she was the breadwinner for her two children. When I took her to hospital, the doctors told me that her liver was damaged, because she took the wrong pills. I blame Rath because he claimed that he could help my child, instead he took her to the grave. To me Rath is like apartheid and is out to get our people and kill them, because he only gives his medication to black people. He is full of politics and is out to kill our children. I wish people will do something about him. He should be banned in South Africa.
Support Group
Jason Wessenaar: We’ve just watched that two people died from using ama tablets or ama vitamins ka Dr Rath. [tablets and vitamins from Dr Rath.] What are your experiences?
Ntombozuko: U-Rath ufikile e-Gugulethu then we approached u-SANCO, then wasi-accommodata to do i-presentation about u-Rath but ubukleva esibenzileyo Jason, siye sa-identify abantu from different support groups to be part of i-foundation ka-Rath. Kulapho baya khona, one of them was u-Nancy Ntsholo. The reason why I mention her is she’s open about her status. She came back ne-package ka-Rath eyoyikekayo enkulu enintsi. Then kulapho because besifna lento kuthiwa yi-evidence uba nantsi into siyibonile and siye sathatha yonke lo-treatment sayisa ku-SANCO wethu then babona ke uba nyani inobungozi. {isiXhosa} [Rath arrived in Gugulethu. Then we approached SANCO. SANCO accommodated us to do a presentation about Rath. The clever thing that we did Jason, was to identify people from different support groups to join Rath’s Foundation. One of them was Nancy Ntsholo. She came back with Rath’s vitamin package. We used it as evidence of what we have seen. We took this evidence to SANCO and they saw that this medication was harmful.]
Busisiwe Maqungo: Ingaba ezizinto zika-Mathias Rath kwaba ukubona ubufutshane kuyo kubantu ebeba-targetile kwi-support groups. Ebezenza ezozinto ezo okanye? {isiXhosa} [Did monitoring and testing of people on this medication happen at Rath’s foundation?]
Ntombozuko: E-Gugulethu kukho i-first visit yabo iyenziwa i-blood test bathi kutsalwa amagazi amanintsi abangawaziyo uba ngawantoni and into eyenzeka kwi-first visit yabo bakhululwa even nepenti, itsho into. So ii-results uba zibuyela phi akho mntu uzaziyo. {isiXhosa} In Gugulethu, on the first visit they do several blood tests and the patients don’t know what it is for? And they have to take their clothes off; even their underwear. Exactly my point and they actually don’t know what happens with the results of these tests.
Lihle Dlamini: Into bayenzayo bathola ukuthi abantu ba-desperate and abantu will do anything ot get better. {IsiZulu} [They know that people are desperate and they’ll do anything to get better.] When I was very sick and had TB ekhaya bangithengela ibhdlela lesiZulu [at home they bought me traditional medicine] but I never drank it, you know. I stood my ground and told them: “No I won’t drink this because angiyazi lento ukuthi ithathwe phi, ihlanganise ini nani, ngizosikha kwi-TB medication {IsiZulu} [I didn’t know what was in that medication.”] and I stuck to TB medication and I got better. The saddest thing of all is our Minister of Health knows u-Rath wayeqoshiwe {isiZulu} [that Rath was banned in other countries.] Why allow him to come to South Africa and destroy us.
Jason Wessenaar: Dr Nceba Gqaleni, an expert in traditional and alternative medicine joins us after this short break. Don’t go away.
Jason Wessenaar: Mmuhi re ya ho amohela hape mona ho Siyayinqoba Beat It! Support Group {Sesotho} [Welcome back to Siyayinqoba Beat It! Support Group] – the program for everyone infected and affected by HIV. We also welcome Dr Nceba Gqaleni an expert in traditional and alternative medicine and the Deputy Dean of the Nelson Mandela School of Medicine at the University of KwaZulu Natal. Welcome doctor. But first Siyayinqoba spoke to other health professionals about the crisis the activities of the Rath Foundation are causing. Let’s take a look.
Illegal drug trials
The Rath Foundation
Voice over: Matthias Rath is a German pharmaceutical proprietor who claims that micronutrients alone treat AIDS. He claims that antiretrovirals, the treatments recognized by every competent medical authority for treating HIV and AIDS are toxic and make AIDS worse. He makes similar claims for heart disease, cancer, diabetes and other diseases. Rath has conducted unauthorized and illegal clinical trials in Khayelitsha and other areas in the Western Cape. These trials involve making false claims to prospective patients that vitamins reverse the course of AIDS, taking blood samples from patients, taking photogtraphs of patients semi-naked for the purpose of before and after photographs and distributing unregistered drugs to patients. Siyayinqoba spoke to Dr Andrew Boulle who recently got over 150 healthcare workers to sign a protest against Dr Matthias Rath.
Dr Andrew Boulle: The Rath Foundation have since March, have distributed a number of different media or have actually distributed incorrect and misleading materials encouraging patients to stop antiretrovirals and to rather take vitamins claiming huge toxicities to antiretrovirals and claiming that the vitamins that they were distributing are the solution to HIV. Infact the last publication claimed the end of the HIV epidemic is now on site.
Voice over: Not only does the Rath publication, You Can, state that ARV drugs are no answer to AIDS, but it also claims that the Rath Foundation has the support of our Minister of Health and the government. So Beat It! went to Tshwane and asked Sibani Mngadi spokesperson for the Ministry of Health: Does the government support the Rath Foundation?
Sibani Mngadi: We agree on this one principal on the important role of nutrition one; on the role of multivitamins and micro-nutrient supplementation; yes we agree on those areas. On other areas I don’t think we generally will agree because to say antiretrovirals have no role whatsoever in the response to HIV/AIDS will not be correct in terms of government policy as it stands now.
Voice Over: But we were not clear, so we asked the question again: “Does the government support the Rath Foundation?”
Sibani Mngadi: We have said that ARVs have a role to play. That is clear and that’s why we made all the arrangements to have them provided. So now if a particular organisation does not, it does not agree with us on that, it does not necessarily mean that you have to denounce the whole organisation especially if you agree with the organisation on other things that are important to highlight at this kind of response.
Voice Over: Still we didn’t quite understand, so we asked once more: “Does the government support the Rath Foundation?”
Sibani Mngadi: Hence I say it’s not correct for them to claim that they have the support of the government. They can claim that maybe government truly agree with them on the issue of nutrition.
Dr Andrew Boulle: With the Rath Health Foundation encouraging patients to stop life saving medicines in a political context that encourages or condones them to do so. As a trust it is against patients and we felt we are complicit in that if we didn’t speak out as health professionals. So we thought that if we could get 20 or 30 HIV clinicians to put their names to a letter we might get a more definite response out of government. So we sent out this letter to the clinicians at the sites that provides antiretroviral treatment and the response was just overwhelming. I think underground that people feel incredibly strongly about this; when you putting heart and soul, as a clinician, into providing HIV care and your patients arrive in total confusion because of deliberate misinformation. Or when they’re being targeted in their homes because people have been identified as HIV infected and agents of the Rath Foundation have gone and found them in their homes and deliberately confused them. It’s just outrageous and people feel strongly about them.
Sibani Mngadi: We have heard the complaints about particularly the Rath Foundation conducting as alleged clinical trials in the Western Cape. And the decision was then to ask the Medicines Control Council to conduct this investigation.
Voice Over: To date the MCC has not responded to Beat It’s request to comment.
Dr Matthias Rath: My name is associated with the answers to a variety of diseases. Now that the word is out that there is a natural remedy for the control of AIDS immune deficiency, no one can stop this.
Support Group
Jason Wessenaar: What kind of back up do people need for them to say that they are able to cure something or they are able to prevent any disease in terms of the medication they offer to people?
Dr Nceba: You want to ensure that you have something that works and something that has, though there may be toxicity but, on the whole it does help that person. I’ve got to ensure that what I do is approved by the ethics committee.
Jason Wessenaar: If I register i- medication, for instance let’s say in Rath’s case they registered with the Department of Agriculture that they are giving food supplements and yet they are selling them or they are giving them to people as something else; as a cure, what should happen, what could happen in a case enjalo? {IsiZulu} [like that?]
Dr Nceba: Mfowethu Jason, umbuzo wakho, uhulumeni une-Medicines Control Council, umkhandlu o-governa ukusetyenziswa kwamakhambi. Nguwona lomkhandlu ekufanele ke ukuthi ugade, ukhusele isizwe. Kukhona nomthetho woku-advertisa ukuze abantu bangalahlekisi umphakathi. So uma ikhambi okanye amapilisi engabhalisiwe ngulomkhandlu kufanele kube huwona owasusayo. {isiZulu} [Mfowethu Jason. The Medicines Control Council governs the use of medicines. It’s that council that should guard the people. There’s a law against false advertising so that people are not misled. So if the medicines are not approved by the MCC, these medicines should be removed from the market.]
Jason Wessenaar: Re bua le Nathan Geffen policy coordinator from the Treatment Action Campaign ha re kgutla mabenkeleng. {Sesotho} [We are joined by Nathan Geffen, policy coordinator from the Treatment Action Campaign. Join us after this break.] Don’t go away.
Jason Wessenaar: Welcome back to Siyayinqoba Beat It! Support Group – the program for everyone infected and affected by HIV. We also welcome Nathan Geffen policy coordinator from the TAC.
Nathan Geffen: We don’t have a problem if someone gives you a supplement like vitamins and they don’t stop you from taking your proven medical treatment that you’re getting from the public clinic. Your TB treatment, your antiretrovirals whatever it might be, that’s not a problem. Rath does more than that, he stops people from taking treatment and in addition to that he’s giving them huge unproven doses of his vitamins and he’s product contains a drug called N-acetylcysteine which is a scheduled drug in South Africa and you may not distribute a schedule drug accept under specific circumstances. And he’s deviating from all of those circumstances.
Busisiwe Maqungo: Ithini i-intention ka-Rath kuyo yonke lento? {isiXhosa} [What’s Rath’s intention in doing all of this?]
Nathan Geffen: He is using people in Khayelitsha and elsewhere as guinea pigs because what his done his running an advertising campaign with them overseas. He puts his adverts up on his website and he’s placed an advert in the New York Times. He’s placed an advert in the International Herald Tribune, he ran an advert in a Namibian newspaper where he makes use of what he’s doing in South Africa to try and market himself. And by marketing himself he hopes to sell more of his vitamins which one can buy on the internet, they are very, very expensive. He charges more for his vitamins than I’ve seen anyone else charge for their vitamins. So he charges a fortune, it’s about R180 per month for his minimum package of his vitamins. And that is unaffordable to most people in South Africa. But the people in Europe and America who believe in what he’s doing and they’re the people who’s providing him with his business.
Vuyani Jacobs: Do you have any support from South African medical journal, the HIV Clinician’s Society or SAMA (South African Medical Association)?
Nathan Geffen: This is just not TAC against Rath. TAC has the support in our legal action of the South African Medical Association. We also have the support in what we doing to try and stop Rath, from the Southern African HIV Clinician Society. UNAIDS has come out with a statement condemning Rath, so have key leaders in the ANC have attacked Rath. But what would be very good is if ANC as a party took on Rath.
Anthony Fernandes: From what we know is Rath’s medication which is a vitamin and a drug has no markings. Yet you just tell us that vitamins and drugs has each proper markings to tell us which they are. How can that be? How can you distribute a drug without a label?
Nathan Geffen: Rath’s products contain both vitamins which don’t need to be registered and drugs which do need to be registered. So it contains a N-acetylcysteine which does need to be registered. But it’s a bit more complex than that because as soon as you make a medical claim about a product, it has to be registered. So if Rath was just distributing Jelly Tots to people which certainly on their own don’t need to be registered, but if he says Jelly Tots treat AIDS or Jelly Tots treat diabetes then you have to get those Jelly Tots registered.
Lihle Dlamini: Are there enough people mhlambe abanga-serva as evidence {isiZulu} [to serve as evidence] to a court that these people have had their family members intoxicated with these vitamins and they have died?
Nathan Geffen: We have put before the court stories of patients who’ve been treated by Rath and who have died. But it’s not our duty to prove to the court that they died because of Rath. All we have to show the court is that Rath is breaking the law by making claims about his medicines even though they are not registered for that purpose. By distributing unregistered medicines and by conducting an illegal clinical trial; that’s all we have to show the court. There was a woman by the name of Marietta Nziba who was his star patient and he put Marietta talking onto his website .There was footage of Marietta talking saying how vitamins have saved her life. She was very sick with AIDS she took Matthias Rath’s vitamins and now she’s better. And then what happened Marietta died. I doubt if Rath has yet taken that off his website. But certainly for a long time after she died he hadn’t taken Marietta’s speech from his website, which shows that the man doesn’t have any shame. And he’s just prepared to use people
Jason Wessenaar: Re ya leboha Nathan, Dr Gqaleni, Ntombozuko, Vanessa, the support group le lona ba bohedi mahaeng. Kajeno re ithutile hore o seke wa sebedisa moriana ofe kapa ofe o hlalosang hore o ka fetola kapa wa fedisa HIV hore e seke ya ata.Haeba moriana ono ha wa amohelwa ke lekgotla la taelo ya meriana le lefapha la tsa bophelo.O seke wa dumela ho nka karolo ho di research kapa diteko haeba diteko tseno ha di a ngodiswa hantle me ha ditaolong.Haeba di kampane tsa di vitamins di Itsebahatsa haholo ka di hlahiswa tsa bona,balokela ho fana ka bopaki ba tsona ka boemo bo bo lebeletsweng ba meriana e meng.O seke wa dumela ho sebediswa hlokomedisa ba bang ka kotsi ya ho kgolwa di puo tse sa fuputswang.Re tshepa hore le thabetse le nanewo la rona la kajeno. [Sesotho} [Thank you Nathan, Dr Gqaleni, Ntombozuko, Vanessa, the support group and the viewers at home. Today we have learned that you should never take any medication that falsely claims to reverse the course of HIV. If the medication has not been approved by the MCC and the Department of Health never allow yourself to be used in unapproved research and tests. If the companies that produce vitamins market their product, they should have proof that the vitamins are registered. Don’t allow yourself to be used and alert others to false claims. We hope that you have enjoyed the show] and that you are feeling the Siyayinqoba Spirit that together we can Beat It! If you have any questions, views and comments about the show please contact us on www.beatit.co.za o ka re ngolla ho info@beatit.co.za {Sesotho} [or you can email us at info@beatit.co.za]. Until then, goodbye.
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