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Siyayinqoba Beat It! 2004 Episode 15 –

False and Fraudulent Cures

Fana Khaba, aka DJ Khabzela, disclosed his HIV positive status publicly on the popular youth radio station, Yfm in May 2003. Khabzela the host of the most popular show on the station chose however not to take antiretrovirals once his HIV had progressed to full blown AIDS. Instead he opted for various other unproven remedies (supported by the South African Minister of Health at the time, Tshabalala-Msimang) that would hold no benefits for his ailing health. In this episode the Siyayinqoba Beat It! team discussed why people opt for unproven remedies and asked what can be done to ensure that fraudulent claims and false cures are exposed and restricted.

Jason Wessenaar: Sanibonani siyani amukhela ku [Hello welcome to] Siyayinqoba Beat It support group. My name is Jason each week we get together with other people living with HIV to talk about issues that are affects our lives, from getting a life insurance and disclosing to our partners, Siyayinqoba is your guide to better living with HIV and AIDS. Uma uphila negciwane le HIV {IsiZulu} [If you are living with the virus HIV] or you have a partner a family member a friend who is HIV positive this programme is for you. Today we are talking about something we all need to be aware of: false cures for HIV. Many people with HIV wish they were HIV negative, and this leaves us open to anything which offers us hope, no matter how untested or unproven. This week, the Siyayinqoba Support Group remembers the spirit of YFM DJ Fana Khaba, aka DJ Khabzela, who had the courage to tell the nation that he was living with HIV. Fana tragically passed away in January this year. After his death there were many worried reports about the way he was treated. The Siyayinqoba Team went to find out more.

False cures for HIV

Soweto, Gauteng

Khabzela’s voice: Hi, hu Khabzela mhlambe uyamamela erey’dweni you can’t find my voice anywhere. Eyi bahowethu ngiya sika nyana. Yazi bengithe ngizo thatha irest nyana ne, ngi vaye ngiyobona udoctor ukuthi enklerk why ngi khathele umhlabe histress yabona because sihlala sitesha all the time. U doctor wathi hayi uyazi hini? U HIV positive. {IsiZulu} [Hi, I’m Khabzela. If you don’t hear me on the radio, you can’t find my voice anywhere, please know I’m a little sick. I said I’m going to take a rest and see a doctor to find out why I feel tired; maybe it’s stress because we’re busy all the time and the doctor said I’m HIV positive.]

S’bongile Radebe (Khabzela’s partner): He just wanted to live, he just wanted something that he would drink and he would just stand up and, you know, walk again.

Dr Thabiso Mmoledi (Ekhaya Lethu): People can move around between acceptance, denial, anger. Khabzela had that classical. You know we’d sit down with him the room, first time, and I said: “You know, I think it’s important that you have to go onto antiretrovirals.” We sat down, we counselled him, and he accepted it. And he accepted his HIV status. But then he would come in the other time and said: “You know what, this HIV story, I don’t believe it. And this antiretroviral treatment, I want to get off it.” And for me that indicated that Khabzela was moving around between acceptance and denial.

Greg Maloka (YFM Station Manager): I literally got ten requests a day, via fax, email, phone, of people who claimed to have a cure. People who know someone, who can help, and, you know the difficult thing about that entire period was half the people actually meant was, and wanted to genuinely help. Half of them were opportunistic. They, because of who he was, wanted to be a part of the whole process.

S’bongile Radebe: We went to see Irene. Irene is a more of a spiritual things organisation that she runs there. With her, you take the herbs, but you take the herbs with faith.

Irene Amiras (Quo Vadis Healthcare): When Khabzela came he was a lovely person. When I met him, I was quite impressed with him. We gave him the medication, he used the medication. For the first two months he did incredibly well.

S’bongile Radebe: Obviously, you want to leave. And you think, maybe this will work faster and you take that one and you drink. And then someone comes with something else and they say: “No, no, no, no, no I know it for sure, it works”. And you take it, and you drink it. You know, now, you don’t know which one is working, which one is not working.

Dr Thabiso Mmoledi: His moving from acceptance to denial made him very vulnerable.

Khabzela’s voiceover: Ngiyabonga ku Greg, ngiyabonga ku Dag, ngiyabonga ku Dre, Ngiyabonga ku Ma, Ngiyabonga ku Sibongile kunginakekela i-support njalo all the time.uyazi ungangibona ngigeyine i-weight ka ncane. Thank for the support bafowethu. Ngizobuya, eshowini heyami leya show, ngizotakhela da, ngizofela da, Into engiyifunayo nje yi support. {IsiZulu} [Thank you Greg, thank you Dag, thank you Dre, thank you mother, thank you S’Bongile for taking care of me. If you could see me, I’ve gained weight. I’ll come back to the show. This is my show. All I need is your support.

Onscreen text: Let us learn from Khaba’s life.

Support group
Jason Wessenaar: Having watched the insert, how can we as people living with HIV/AIDS relate to Khabzela’s story?

Busisiwe Maqungo: They will do na ntoni na? Anything enobanceda kule situation bakuyo. {IsiXhosa} People will do anything to cure the virus.

Jason Wessenaar: But is it more a question of being desperate, or of not being informed?

Busisiwe Maqungo: Yes, yi-desperation abantu abafuna ukuyenza imali out of I HIV they are using that opportunity because bayazi ababuntu ba desparate ka ngakanani. Nami ndi ngathatha nje into, ndikhe amaxolo ndiwagaye ndiwafakhe ebhotileni ndiwanike ingama elicute, elizanika abantu ithemba. {IsiXhosa} [Yes, they are desperate and people want to make money from HIV. They’re using that opportunity because they know people who are infected with HIV are desperate. I can go and pick anything, grind it and give it a cute name. Then give it to HIV positive people to give them hope.] I mean this ‘Amazing Grace’ thing now…

Jason Wessenaar: It sounds really amazing.

Lihle Dlamini: I think a lot of people who are selling these false cures just because they know people who are HIV positive and have not yet learnt to accept their status are more vulnerable to whatever they are selling.

Busisiwe Maqungo: But as i-girlfriend yalom’ntana u Khabezela imen’shinile ukuba lamayeza ka Irene funekile uwathathe with faith so it means that nyani, ja with faith ungathatha na manzi uwasele uphile if that is the case. {IsiXhosa} [But Khabzela’s girlfriend mentioned you have to take Irene’s medication with faith. You can even drink water and have faith if that is the case.]

Anthony Fernandes: I don’t believe in faith and I’m not somebody who follows a faith at all, in fact I’m a complete atheist. And yet, I’m very conscious about my health and what is presented to me. And I think there’s so many products on the market that you have to be really careful about, even I went through a stage when I just diagnosed. I panicked, and I thought lots of raw vegetables, you wanna get as much nutrients as possible in and so I used to make these juices and shakes out of fruit and vegetables. And my doctor said to me: “What is going on? I can see your liver functions are working really hard, there’s some strain on it, have you changed your diet?” And it’s because I went on this complete health binge, which is actually quite dangerous to you if you overdo it, because your body needs to work and function normal, you can’t just overdose it either.

John Vollenhoven: He was such a well-known person. Who educate this person? What was the traditional healer saying, what was the doctor saying? Ek weet van ’n vrou wat haar dogter verloor het op twee en twintig jaar en sy het geglo in ’n simpel ding as wortels. {Afrikaans} [I know about a woman who lost her 22 year old daughter. She believed in carrots.] Carrots can do this. She just feed and the daughter died because she’s got nothing else, she’s just believing in that carrots. And so her daughter died, it’s as simple as this.

Anthony Fernandes: So she died of carrots?

John Vollenhoven: Apparently, apparently. I mean, people believe in this kinds of things man.

Anthony Fernandes: I mean you must believe that you’re gonna survive, and you want to live. That’s an important element. It’s important of having that kind of faith of wanting to have it. Um, but this is a famous guy, he had lots of people writing him. Everybody wanted to help him and be part of the process. But I think at the end of the day it was more harmful to him. He should have just stuck out to one thing, and he was in a hurry.

Busisiwe Maqungo: That’s the one thing. He was in a hurry. He was not treatment literate, because we can always go back to treatment literacy with these things. As much as faith can work up to a certain point, but still, because for instance I’m not on ARVs, I’m not on anything, I’m only living positively. And my faith on positive living has kept me going for a very long time, and it will still keep me going. I have faith on positive living, but I know that someday I will need ARVs. And when the time comes for me to take ARVs, I will definitely take them.

Jason Wessenaar: Most of these remedies are not tested or proven, or well researched and some of them are and some of them work. So we can’t necessarily push people to use ARVs and not use what might work for them in the meantime. I mean, Busi may be using some other thing, she’s not on ARVs. I’m not on ARVs. Their may be other things that are proven that I could use.

Busisiwe Maqungo: There’s too much desperation involved in this HIV thing. When I first heard about my HIV status in 1999, in 2000 I attended the first conference in Durban. Before I went there, I already heard about this African potato, which is only found in Durban. I never saw it before. Then, I went to Durban the first thing I asked for when I got there was the African potato. I came home with a bag this big, full of African potato because I wanted to get healed, and I ended up not using the African potato. But before I met a medical person, I was so desperate to get my health to anything that could help me.

Jason Wessenaar: Ha re kgutla papatsong {SeSotho} [We will talk more about] false cures for HIV.

Jason Wessenaar: Mmuhi re a ho amohela hape mona ho Siyayinqoba Support Group. {SeSotho} [Hi, welcome to the Siyayinqoba Support Group.]

Investigating false cures for HIV

Cape Town

Dr Rudy Onia: I’m Dr Rudy Onia, this is the South African Traditional Medicines Research Group and we research traditional medicines looking at activity of various plants, against common diseases or illnesses that are particularly relevant to the South African context. So things like TB, HIV, malaria would be the prime research areas. The regulatory systems for medicines have evolved with western medicine. They’ve evolved to regulate the active principal in a medicine. And usually how pharmaceutical companies develop medicine would be to ultimately end up with a single compound that produces an effect. With herbal medicines it’s very different, because you’re not dealing with a product that contains one specific compound. For example, taking a St John’s Wort or taking an African potato; there are masses of compounds in these products so you’re actually taking a whole plant or a crude extract of that plant that contains numerous different compounds.

Dr Gilbert Matsabisa (Medical Research Council): I’m Dr Gilbert Matsabisa. I’m the head of the Indigenous Knowledge Systems of health at the Medical Research Council. We research traditional medicines. A lot has been said about African potato and there has been a number of claims where people are using it to stimulate their immune systems, especially those people who have HIV and AIDS. African potato has been claimed to boost the immune system, and we want to validate that, we want to test that.

SA medical research council Dr Linda-Gail Bekker (Immunologist): The African potato, we’re not even sure what effects that might have on antiretrovirals. We know that it has an effect on CD4 cells. Now the HIV virus lives within CD4 cells. If these agents are having an effect on the CD4 cells, one of the things ii could be doing is stirring up the HIV virus, and causing the HIV virus to replicate more.

Dr Rudy Onia: What I would suggest people doing is to be very cautious with the amount of African potato they eat. If they consume it as part of their general diets, by all means, that’s great. But if they’re taking it in excessive amounts, they need to be very cautious, and I would advise to rather wait until more research becomes available.

Dr Linda-Gail Bekker: Antiretroviral agents, as we know, in particular many of them are metabolised by the liver. Quite a few of the agents labeled naturopathic that are sold as immune boosters or as antidepressants, also have an effect on the liver. When more than one agent is working on the liver at the same time, those agents can interact with each other, and may choose the one to become more, or to break down more quickly, or to have a variety of different effects, and that is why we’re very anxious that when people take in these naturopathic agents, as well as the antiretrovirals, these naturopathic agents can be playing havoc with the ARVs. There is not a shadow of doubt in our minds that today there is no cure for HIV, alright? But we do know from good worldwide evidence-based scientific literature, is that the only thing that makes an impact on HIV progression is antiretroviral agents. These naturopathic agents, in terms of all good scientific evidence, have not been shown to make an impact on the progression of HIV.

Support group

Jason Wessenaar: Having watched this insert, how do we then approach the issue of traditional medicines?

Busisiwe Maqungo: U Gail uyenzile naye clear ukubana as much as African potato ne garlic noba zi immune boosters but at the end day i virus ihlala ku immune system yakho. So if izaba ne-effect ku-system yakho izaba ne-effect naku virus so that means that inganazo izi nto ezi bad, iza booster i-immune system yakho i-booster ne-viral load yakho. {IsiXhosa} [Gail made it clear that as much as African potato and garlic can boost your immune system, but at the end of the day the virus lives in your immune system. If it has an effect on your immune system, it will have an effect on your virus. That means bad things will happen. It will boost your immune system and it will boost your viral load.]

John Vollenhoven: Another thing is that garlic and ARVs don’t work well together. It will disrupt the work of the ARVs.

Busisiwe Maqungo: That’s because people take them in big quantities, they’re desperate.

John Vollenhoven: Stellenbosch University did have research on that, and saying that: “No, garlic doesn’t work for HIV people who’s on ARVs.”

Vuyani Jacobs: Garlic should be promoted, not as a medication. It should be promoted as part of food stuff that children should eat.

Anthony Fernandes: It will help you, it will not cure you.

Lihle Dlamini: Because if you have a headache you cannot take a carrot and the headache goes away, seriously. So they shouldn’t advertise garlic like that.

Vuyani Jacobs: With this kind of medications you’ll find that these people, it pushes their systems so high and then they collapse. As we already admitted that they’re not tested, so I don’t believe that they should be promoted at all. And since they’re not tested, we don’t know it’s dangers. I know ARV dangers, and I know exactly what it does. For instance I used to use AZT and I know I will no more use AZT, but I used to have blackness here. And those are kind of things that are accepted, I knew they were going to happen because I was given a programme to go through of them. Now, uspirulina, who’s that lady?

Lihle Dlamini: Irene.

Vuyani Jacobs: uIrene, uIrene with that kind of medication, it’s about taking a risk on people’s lives, and without taking the responsibility out of you.

Jason Wessenaar: What you’re also admitting is that there are side-effects to ARVs.

Vuyani Jacobs: Yes, I admit that.

Jason Wessenaar: And there are people who have also died from side-effects of ARVs.

Herbs Busisiwe Maqungo: And side-effects are being mentioned. Kodwa uIrene {IsiXhosa} [But with Irene] her suggested treatment is perfect, it’s perfect, this Amazing Grace kaIrene, no side-effects, no toxicity, no nothing. It’s going to cure you!

Lihle Dlamini: We are not saying amaARVs are a cure, they merely prolong a life. We will die one day, and amaARVs, there will come a time when amaARVs won’t work for me anymore. So at least they prolong my life, they’re not a cure. And yet there is no cure for HIV anyway, so it hasn’t been found yet. So abantu mabayekhe ukuthi ngifuna ukuqeda I HIV egazini it a cure, it’s a cure I zophela and all that. I HIV ayipheli egazini i hamba nje iyochasha kwezinye izindawo. {IsiZulu} [So people should stop saying that there is a cure for HIV. There is no cure for HIV and it will always live in your body.]

Jason Wessenaar: Welcome to Dr Matsabisa, from the Medical Research Council’s Unit on Traditional Medicines. Dr Matsabisa, are there any herbal remedies or cures for HIV that we know of?

Dr Gilbert Matsabisa: At this point in time we cannot say there’s a cure, but what we can say, we can say that in the study group, the observational studies, the clinical trials that we have done, we have now seen patients whose quality of life has improved. It’s very important to distinguishing between increasing in your CD4 count, because I can go to the beach and relax and forget about my worries, and I will stimulate my own immune system. It is to what extent do you stimulate, do you raise up your CD4 count? If you look at a normal individual who is not HIV positive, CD4 count ranges up from about 500 to 800 to 1000. Now, we need to look at those products and say: “Do they increase your CD4 count to a meaningful level?” But, even if you have your CD4 count increase, if your quality of life, which is simply saying: “Can I do what I used to do as a normal human being?” if that has not changed, we have not actually gotten to the answer. So it’s not a matter of looking at your viral load as a marker, your CD4 count, your CD8 or your CD4/CD8 ratio. It is the quality of life. Can you go back into society and become productive? That’s the most important thing.

Anthony Fernandes: The most important thing for me with HIV is the virus. It’s not the CD4 count, it’s not how comfortable you feel, how boosted up you feel with your immune system, and back to a normal life. That can happen easily with being on antiretrovirals or not, or just living healthily and having a good focused lifestyle. Yet, I do think that to be a normal lifestyle you have to get that viral load undetectable and completely reverse. I would only believe in this product if it can do that, and nothing else.

Dr Gilbert Matsabisa: I’m saying, as the Medical Research Council, this is what we’re doing. We are doing research. We have not recommended any of those products. So, I think that’s what I wanted to say. We are looking at these products, we are testing them, and again we must make it very clear that we do not force individuals to bring their products. It is those individuals who are saying: “I’ve got confidence in my product, I want it tested because I want to make it available to the larger public.” Those are the people that we are saying: “Fine, we will do it, we will screen it, we will do it for you.” We do not have any control on those products that are being sold outside. I think that’s a function of Medicines Control Council; you know we do research. You have your Medical Control Council that looks at the regulation and the registration of medicines for the people of this country.

Vuyani Jacobs: People are dying. People are using this medication, that’s a problem. The reason why I’m asking this kind of question is that people are using this kind of medication and they die and the report don’t go back. And the people who are giving out this kind of medication are not even under the MCC. They are not controlled by the Medical Control Council and, secondly, they didn’t come to you at the MRC to say: “Could you prove our drugs?” But yet, they got money to advertise these drugs and they use support groups and other people with HIV as a recommendation on it. Now, should we play that kind of role, or should we just say: “No, no, no, no, let’s do it this way.”

Dr Gilbert Matsabisa: We are not saying herbal medicines must replace nutrition or it must replace antiretrovirals. We want to see, this must work hand-in-hand. Our role is research and recommendation, and we recommend on the products that we have researched on. We cannot recommend on something that we do not know. I know what you are talking about, we hear about these things. But I think what you are really asking is: “What should be done to those products which are out there and have no basis?” And that’s a question, honestly, that should not come to MRC.

Busisiwe Maqungo: But thina abantu abahlala ezilokushini sebe sibabona abantu besifa in big numbers because athenga lama yeza. Kufika abantu ku support groups zethu basithengisele izibhotile ngoba sidesparate sizithathe sizisele sinqonde yinto ezosinceda ngoba uu yi recommende wayi recommenda umunikhazi wayo akuxelele ukuba within no time uzawuphila. I buhlungu lento ezekayo. {IsiXhosa} But in the township, we see people dying in big numbers because they are using those medicines. They come to our support groups and sell these remedies, and out of desperation we take it and drink it. Because the seller recommends that his products work. This situation is sad.

Dr Gilbert Matsabisa: What we want to say to people who are HIV positive, we really want to say, if a person comes to your support group and says: “I’ve got a miracle muti, I’ve got this thing”, you’ve got to ask two things: “Has this been tested? Has this been researched?” If they cannot give you the proof to say: “Yes, it has been tested, here’s evidence”, don’t take it!

Vuyani Jacobs: For once we agree.

Anthony Fernandes: I don’t think so.

Jason Wessenaar: Things to remember are:

There is no cure for HIV.
Do not take any medicine that has not been tested by the Medical Research Council.
Consult a doctor before taking any medication along with your ARVs. Some medication which boosts your immune system may also boost your viral load and may interfere with antiretroviral therapy.

Jason Wessenaar: We hope that you have enjoyed the show and are feeling the Siyayinqoba spirit that together we can Beat It! If you have any questions, please contact us on the numbers below. Join us again next week in the Siyayinqoba Support Group. Until then, stay healthy, stay positive. Salani kahle. {IsiZulu} [Good bye]