Home / Episode 8

Beat It! 2002 Episode 8

In this episode Support Group member Nomandla introduced us to her son Thami who is HIV positive and on ARVs. Dr Nombulelo gave the viewers an introduction to PMTCT. In the Special Report we accompanied Zackie Achmat, Mathew Damane and others to Brazil to learn more about generic drugs.

Vuyani Jacobs: Hi, ndingu Vuyani Jacobs. Wamkelekile ku-Beat It! {IsiXhosa} [Hi, I’m Vuyani Jacobs. Welcome to Beat It!]

Nombeko Mpongo: Ndingu Nombeko Mpongo, u-Beat It! wenzelwe thina, esenziwa kwasithi thina bantu baphila nalentsholongwane. {IsiXhosa}[I’m Nombeko Mpongo, Beat It! is for us by us, the people living with the virus.]

Vuyani Jacobs: Nabo bonke abazimisele ukulwa nayo lengxaki. Nombeko kwenzeka ntoni kuleveki? {IsiXhosa} [And anyone who is willing to fight this problem. Nombeko what’s going on this week?]

Nombeko Mpongo: Oh, Doctor Nombulelo will be with us to talk about prevention-of-mother-to-child-transmission of HIV and in our Special Report we explain how generic medicines can make treatment more affordable.

Vuyani Jacobs: But first let us join the Beat It! Support Group where Nomandla is telling us how her three year old son, Thamsanqa, is doing now that he is on antiretrovirals.

Nomandla and Thamasanqa Yako - Kids on ARVs

Nomandla Yako: He is my first born and I love him. The other day he was ill. I took him to Nongulugu Clinic and I asked that doctor, I was very concerned. I asked her how long he will alive. So, the doctor said: “The other ones grew up till six years but there is no hope for this one because he was very ill.” And it made me feel guilty of transmitting this virus to him, when I see him suffering. I was worried, I didn’t know how is he going to live but now I am happy because he is on antiretrovirals. I think I will see him growing up. He can fight HIV now. I have hope. My worry is that, I don’t know, he’s on pilot site, so I don’t know when they go, to their country what is going to happen to him. He is doing very well. He experienced no side effects and his growing up and when he is visiting the doctor they measure his height and the weight and they find out that he is doing very well. He’s growing, he is gaining a lot of weight. He’s taking: this is Nevirapine; he is taking 13 mls of Nevirapine, you know. This is AZT, the retrovir; he is taking 11 mls twice a day. This is 3TC; he is six mls twice a day.

Beat It! Support Group

Nomandla Yako: Uyalithanda iyeza? Limnandi iyeza? {Isixhosa} [Do you like the medicine, is it nice?]

Thamsanqa Yako: Lento yi-dummy. {IsiXhosa} [This is a dummy.]

Vuyani Jacobs: Were you not afraid to start to early or to late or how was that explained to you? I mean when is the right time to start Thami on antiretrovirals? Seemingly people, there is a lot of debate on the timing of starting antiretrovirals, especially in adults; I wonder how that affects children.

Nomandla Yako: At MSF, they have a book there, they just check the ages of the children, or Thami was two years six months, you know; at his age the CD4 count was normal, at the year of two years the CD4 count has to be 700 and over, you know. So, he’s CD4 count was 701, that was normal. So, they count the other lymphocytes, the other cells and they divide the other lymphocytes with the CD4 count. So the percentage at his age was supposed to be 15 but his percentage was 11.1; it was not normal. But they said he is in between; he can wait till the CD4 count can get lower or he can get some other infection. So I just said: “No, I can’t wait. You are taking the number of 30 children, so, the time I’m waiting for the CD4 count to be low, the number will be full.” That is why I said they can, he can take the medication because he was in between.

Prudence Mabele: Nomandla, I congratulate you for taking this decision. If you still decided or you waited maybe Thami today wouldn’t have had the opportunity to participate. So, it was brave of you to take the decision quickly and look now, he is looking better and he is stronger. So, I want to just open the discussion to the group: How many other children have we let down as South Africa?

Busisiwe Maqungo: There’s only 30 spaces in the whole of South Africa; only 30 children should get the antiretrovirals and the saddest part about this is that this antiretrovirals are not from our government, it’s just a mercy from the MSF, this organisation from all the way, all the way from France or wherever. I mean what is our government doing about the antiretrovirals? What is our government thinking about the children dying everyday? It’s our government, we voted for this government but we got nothing from that.

Sindiswa Godwana: Ewe ne bethunana, ndiyangqinelana noBusisiwe ngoba luxanduva lukarhulumente olu lentobana makaluthathe alenze olwakhe abantwana bazofumana amayeza ngoba siyabona mos abantwana bayaphila ngalamayeza. U-MSF ngokwenza lento ayenzayo, wenzela ukubonisa u-government ukuba usenokuthi ancede ubomi babantu abaninzi ngoba ke nyani ke abantu bayaphela. {IsXhosa} [I agree with Busisiwe because it is the government’s responsibility to make sure that the children get the medicines, because we can see they get better from these medicines. MSF is doing this to show the government that it can save many lives, because people are dying.]

Faghmeda Miller: Moet die kinders nou vir die res van hulle lewens op die medikasie bly of wat? Dit is wat ek graag wil weet. Kry hulle net ’n sekere tydperk of, wat sê die dokters? {Afrikaans} [Should children stay on medication for the rest of their lives? According to the doctors, is there a set time frame?]

Busisiwe Maqungo: These drugs are to be taken for the rest of your life, if you’re on antiretrovirals. You’re an HIV positive person and you’re on antiretrovirals; you should take them for life. And the MSF is only here five years and after five years the programme is over. And the MSF is only in Khayelitsha, for people in Khayelitsha. Now he is saying that after the five year contract of MSF has ended the government should take over. I’m thinking to start now, taking over in other provinces, that in these provinces where there is no MSF, people there also need these antiretrovirals.

Corné Fourie: Did the little one experience any side effects that differ from yours, because from what I understand you also get AZT and Nevirapine?

Nomandla Yako: Okay, Corné as we are taking the same medication, the toxicities and the side effects are the same, we were monitoring him and they asked whether he had some side effects. So after second week they checked the liver, because you know Nevirapine is toxic on liver, and the liver was doing very well. So they increased the dose of Nevirapine, like he had to take Nevirapine twice a day, and after a month they increased the mls of Nevirapine, from eleven mls to twelve mls.

Anthony Fernandes: I’ve got a question for all the mothers really; we all know that HIV stays in your body forever and you know taking antiretrovirals is so easy for adults, you know, regardless of all the side effects, all that; two in the morning, two in the evening, usually that is a basic cocktail and goes down well. I want to know is it different for children? Is it a hassle? Is it a lifestyle adjustment or is it something that kids could even maybe do by themselves?

Nomandla Yako: You know last year I was at Zimbabwe with Bongi. So there were American people they shown us the videos, where the American kids took some, the drugs. When they found out the kids were positive they grew up, others grew up till sixteen and eighteen years and the others went to college and the kids were responsible to take their own medication. Since I saw that videos I wanted Thami to be there, to be like those kids also, because I, you know, you know what I always thinking, I don’t want to lose Thami and I don’t want Thami lose me, that’s why I wanted to get the medication with Thami.

Prudence Mabele: I know a friend of ours kid who was very young when she started the medication and she grew up from age three years, taking the medication, but at the age of ten years she was already herself reminding herself, taking the medications on time, eating before anybody tells her. It means the children also change, they become responsible, they remember their time, they rest, they know all of the right things.

Busisiwe Maqungo: Guys, as, like I’m listening this number of kids that are given the antiretrovirals is very touching to me because it’s a very small number. And I think the rights of the children are being violated; they are not considered by our government. It will sound as if I am against our government; no I’m not. I voted for this government and I will still vote for this government but the things is this: we need our rights to be respected.

Nombeko Mpongo: Ubuyele ku-Beat It! {IsiXhosa} [You are back with Beat It!] I’m so happy for Thamsanqa but surely every child has the right to enjoy the gift of life. I think that government has a responsibility to see that every child born with HIV gets a chance to go on antiretroviral treatment. It’s terrible to leave children to die in this way.

Vuyani Jacobs: You are right. We all believe in prevention, that’s why we should prevent as many children as possible from being infected at birth. Doctor Nombulelo is up next talking about the prevention-of-mother-to-child-transmission of HIV.

Dr Nombulelo Madala's consulting rooms

Dr Nombulelo Madala: Mandizibulisele kwakhona emakhaya, ndingu Doctor Nombulelo, iHIV doctor yenu. {IsiXhosa} [Greetings at home again, I’m Dr Nombulelo, your HIV community doctor.] Thanks for being with us again. A story that touches my heart is that of an eight year old HIV positive girl that attends one of the clinics where I work, I will call her Busi. She is a very courageous little girl who has continued to attend school even though she has been very sick and been in and out of hospital. Recently Busi developed big lymph glands in the neck. Unfortunately for her we couldn’t treat these lymph glands quickly because we were not sure what was causing them. This was the last straw for Busi and she refused to go to school, because she was the laughing stock of the other children. This is the type of problem that faces children that are born with HIV. Most of these children die before they reach the age of two. Those who are lucky enough to survive longer, like Busi, unfortunately have a very poor quality of life because they cannot do all the things that other children can do. Transmission of HIV from the mother to the child can happen during pregnancy, at birth or from the breast milk of the mother. Not all children that are born by HIV positive women will turn out to be HIV positive. It is known that it is only about a third that will get HIV from the mother. This transmission of HIV is almost unheard of in countries where antiretrovirals drugs are widely available to the population. For a country like ours where antiretrovirals are not yet widely available for the population a drug that is an antiretrovirals drug called Nevirapine, given to the mother during labour and a few drops to the baby after birth, can decrease transmission of HIV from the mother to the child by up to 50%. At the moment in South Africa there is a process of making Nevirapine widely available. Pregnant women are encouraged to go to one of the centres that offer this service; where they will be given voluntary counselling and testing for HIV. If you test HIV positive and you are pregnant you may choose to get Nevirapine and take it during delivery and then a few drops will be given to the baby after birth. This will tremendously decrease the chances of the baby getting HIV. This is Dr Nombulelo signing off. Thank you for listening to me and goodbye for now. Stay healthy.

Nombeko Mpongo: Bubhuchule utesta kuba awunayo na intsholongwane kagaw’layo xa ukhulelwe. Kaloku ipreventa uthelelo losana ngunina. {IsiXhosa} [It is wise to test whether you have the virus or not when you are pregnant. It prevents the mother-to-child-transmission.]

Vuyani Jacobs: That’s right. The Constitutional Court has said that every clinic and hospital that has the capacity to do voluntary counselling and testing and to supply Nevirapine can start right away. The decision to implement this vital service lies with the doctor, not with the Department of Health. We are hoping to see PMTCT available in many health facilities very, very soon.

Nombeko Mpongo: The big issue facing all of us is how to help HIV positive mothers so that children are not left orphaned. At the Barcelona World AIDS Conference this year, Gracá Michel called for mothers to get antiretroviral medicines so that they could be there for their children.

Vuyani Jacobs: The main thing preventing women from being given ARVs is the price of the medicine.

Nombeko Mpongo: Oh, by bringing the price down by introducing cheaper generic versions of these medicines is the subject of tonight’s Special Report.

Vuyani Jacobs: Nombeko, what is generics now?

Nombeko Mpongo: Oh, it’s the same medicine made by another company at a cheaper price.

Vuyani Jacobs: Aaahhh.

Special Report - Generic antiretrovirals

Dr Hermann Reuter (MSF, Khayelitsha): Any medication that comes onto the market, the company that brings it on to the market would take out a patent right on it, which gives it exclusive rights to sell that medication for the next 20 years. And because all the antiretrovirals have only been developed in the last 15 years, all of the antiretroviral medication that we can use to really treat people with HIV are still under patent right, which means one company can decide how much of it they are going to produce and at what price and what cost.

Jonathan Berger (AIDS Law Project): And then you say, well what is the price charged and what is the costs actually incurred and what we’re saying is that the prices that are charged for these drugs are really substantially higher and are excessive. A generic drug is a bio equivalent of a brand name drug. So a generic is exactly, it’s the same drug. It’s manufactured by a different company, has the same chemical ingredient, it works the same in your body, it’s for all intense and purposes exactly the same, it just doesn’t carry the same brand name.

Dr Hermann Reuter: In the public health sector, we still don’t have the medications because of the cost and that’s why we as MSF have decided to important this medicines from Brazil.

Zackie Achmat (Chairperson, Treatment Action Campaign): There are two reasons why we are her in Brazil. The first is: our government does not have a proper programme too treat people with HIV and we are here to witness what the Brazilian AIDS programme is about. The second reason we’re here is also to look at cheaper medicines. We want to see how the Brazilian government has beaten the international drug companies to make medicines affordable for their people.

Mathew Damane: We came to Brazil to see the pharmaceutical company, which they call the Farmaguinhos, which produce the generic medicines or the antiretrovirals drugs. I’m an MSF patient whose taking the antiretrovirals drugs so I’m here to take the antiretrovirals to my country, because I’ve seen that the antiretrovirals drugs can save the lives of the people who are HIV positive.

Eloan dos Santos (Head of Farmaguinhos, Brazil): {Portuguese} [Brazil has the best health system I’ve ever seen for developing countries. Why? Because we give the medicine to the population for free as well as treating people in the healthcare and hospitals. The population doesn’t need to pay anything for the medicines. The technical team of Farmaguinhos received this request from the ministry. This was a duty of the ministry, because in our legislation the government has to treat rich and poor who have AIDS, dispensing the medicines for free, or else they may be prosecuted.]

Jonathan Berger: A voluntary licence is a licence that the brand name manufacturer gives on their own accord; they agree to another company manufacturing their product. So even though they have the patent and the patent allows them to exclude all competition; a voluntary license is something that they say: “We’re prepared to give you a license to manufacture this product.” What a compulsory license is, is when, when they don’t agree to grant a voluntary license or they agree to grant a license and the terms and conditions are not favourable, are not reasonable. It would operate in exactly the same way except the licence is not voluntarily given by the manufacturer; it’s ordered by a court.

Eloan dos Santos: {Portuguese} [What happened then was, the Ministry of Health started to understand that, due to the high prices, it would not be able to treat the increasing number of people infected with HIV. It had to find a solution, because it was obliged by law, to supply the medicines, or be prosecuted. So they asked Farmaguinhos, a laboratory that belongs to the Ministry of Health, a laboratory with the technical expertise, to develop these products, so that they are bio equivalent to the brand products. That way they would be of the same quality.]

Jonathan Berger: The key problem is that the antiretrovirals drugs that are available are patented.

Dr Hermann Reuter: We are using the generic versions of patented drugs and the drug companies might say your breaking the patent law. We believe we have to put the health of our patients above rights of companies to make unjust profits.

Eloan dos Santos: {Portuguese} [So we made Efavirenz, which is under patent and Merck dropped the price. We made Nelfinavir, which is under patent and Roche dropped the price. This price reduction was the basis for a reduction in deaths in the country. The number of people occupying hospital beds was reduced, allowing people to have a normal and full life, working and so on. It allowed for a reduction in the Ministry’s expenses, so they could go from treating 80 000 people to 100 000 people with AIDS, out of the estimated 500 000 people living with HIV in Brazil. So we are already treating 100 000 people.]

Dr Hermann Reuter: Half of the patients that we are treating at the moment would have been dead by now if it wasn’t for these medicines. As a doctor you have to take a decision and I would encourage all doctors to strongly push the government to actually issue a compulsory licence. A compulsory licence is a law which would allow South African companies to start producing these medicines themselves. In fact the World Trade Organisation in Doha last year, where they discussed this issue, clearly gave the go ahead to developing countries to use the right to issue compulsory licences to over rule patent rights if it is an emergency.

Eloan dos Santos: {Portuguese} [This programme was made in a very conscientious way; first comes life, then profit.]

Zackie Achmat: Drug companies in South Africa say that you are making a loss and that you’re subsidising it, that’s why the prices are so low of your antiretrovirals.

Eloan dos Santos: {Portuguese} [True? Nothing here is subsidised. Here, not even the professionals are paid by the government, if they were, then I could agree that there is a subsidy, but that is not the case. The workers of Farmaguinhos are paid by the production of Farmaguinhos.]

Zackie Achmat: The drug companies say that you use cheap and slave labour in your factories.

Eloan dos Santos: {Portuguese} [That is the first point: there is no subsidy. Second, slave labour is what they do in the Third World. They indebt the Third World so that the G7 countries get richer; that is slave labour. When we work and fruit of our labour enrich the G7, and that is exactly the aim of the IMF, to make us dependent, always subordinate, in that way we are their slaves. The law of slavery has been replaced by another logic: IMF globalisation. There is no slave labour here.

Vuyani Jacobs: GlaxoWellcome’s Combivir, that is Zidovudine & Lamivudine, cost eight hundred and R11 per patient per month. Boehringer’s Viramune, that is Nevirapine, costs three hundred and R65 per month per patient. The total cost of this triple therapy is one thousand one hundred and seventy six rand. The generic equivalent of this combination from Farmaguinhos in Brazil is four hundred and R50 per patient per month; so we could treat twice as many people as we’re doing today and even lower prices are available from other generic manufacturers in India and Thailand.

Eric Goemaere (Head of MSF, South Africa): We have decided that the life of a patient cannot be put under the patent right, this will, allows us potentially to double the number of patient we put on the treatment and by no way patents could be a barrier to that.

Zackie Achmat: We want the government to demonstrate the political will to bring the Medicines Act in to operation, to ensure that there are compulsory licences so that we can have local production of generic medicines, to ensure that the price comes down and that we can treat people.

Mark Heywood (National Secretary, Treatment Action Campaign): The door is open for this country to produce its own medicines and do that with the knowledge that there will be massive international support for this kind of action by the South African government, above all do it because it will save lives and put our response to HIV in this country back on track.

Vuyani Jacobs: All that really stands between people that are dying of AIDS and a chance of life is …

Nombeko Mpongo: Money. If government will simply allow these generics to compete with a brand name products the price of ARVs could come down to about R200 per month. At that price it will be affordable for government to start treating everyone who needs it.

Vuyani Jacobs: Like the HIV positive mothers and the people who are getting very sick with opportunistic infections.

Nombeko Mpongo: Yes, the struggle for cheaper ARVs is something every positive person and our supporters can be involved in. And that’s our show for this week. We hope you find it helpful.

Vuyani Jacobs: We value your comments and feedbacks so please contact us on the numbers on your screen and we’ll be with you again next week on e.

Nombeko Mpongo: And you can catch the repeat broadcast of this show on Sunday at 11h30 in the morning. Have a great week. Kwaye khumbula sisonke sizonqoba. {IsXhosa} [Remember, together we can Beat It!]

< previous episode | next episode >