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Beat It! 1999 Episode 7

In this episode the Beat It! team looked at what was withholding government from making antiretroviral treatment readily available to the HIV positive South Africans that could not afford to buy this life saving medication themselves. The Human Rights section went on to look at the discriminatory practices of the South African National Defence Force.

Sipho Nhlapo: Hi, I’m Sipho Nhlapo.

Mercy Makhalemele: Hi, my name is Mercy Makhalemele. Welcome back to Beat It! - your guide to better living with HIV/AIDS.

Sipho Nhlapo: Last week we looked at medications which directly attacks HIV and greatly improves our chances of survival of HIV.

Mercy Makhalemele: But we saw that these medications were very expensive between 500 to 5000 per month so that even the least expensive of these medications is beyond the reach of most people like us.

Sipho Nhlapo: This week we are looking at why these medications are expensive and what our government is doing to try and bring the costs down.

Special Report - Antiretrovirals – They are here and they work Part 2

Narrator: Some people feel that it is a waste of money to treat HIV/AIDS patients because they’re going to die anyway.

Desiree Booysen (TAC Co-ordinator, KZN): If you are in the full blown AIDS stage, they don’t bother to give you something to treat your pneumonia. They are wasting the medication on you. They could’ve used it on somebody else who isn’t HIV.

Justice Edwin Cameron (Person Living with HIV/AIDS): It’s no argument to say people with AIDS are going to die because that death is not inevitable, at one level all of us as human beings are going to die. People with AIDS are at the threat of dying sooner but the point is that there is treatment available. So it’s a very bad argument to accept it as inevitable.

Narrator: Many medicines needed to treat HIV are cheap but other medicines like antiretrovirals and medicines used to treat serious opportunistic infections are very expensive. Many doctors say they want to treat these diseases but they are stopped by the high cost of these medicines.

Dr Allison Russell (Physician at Chris Hani Baragwanath Hospital): The drug used to treat Cytomegalovirus virus is a drug called Gangcyclovir and it is extremely expensive, it probably costs more than a thousand rand a day to treat a patient.

Dr Wilbert Bannenberg (WHO Co-ordinator for South African Drug Action Programme): Some of the drugs that we’d like to use for the opportunistic infections in HIV patients are so expensive that we cannot afford basically to buy enough for all the people who need it.

Narrator: When it comes to antiretrovirals, the situation is even worse.

Karen Michaels (Research Fellow in Health Economics & HIV/AIDS Research Division, University of Natal): No, it is not feasible to give antiretrovirals at this stage mainly because of current market prices. It’s not affordable; it is not a thing this government can even contemplate at this stage.

Desiree Booysen (TAC Co-ordinator, KZN): Then we read in our papers, our defence force bought so much arms, two comma something billion then we bought a submarine. But they saved two comma something million that was supposed to be 29 but it’s only 27 million they spent. They are investing it in the sea, buying submarines, people are dying.

Narrator: Some pharmaceutical manufacturers like GlaxoWellcome have already offered their antiretroviral medicine to government at a discount of 70% on the world average price. Government says it still cannot afford these prices.

Dr Wilbert Bannenberg (WHO Co-ordinator for South African Drug Action Programme): A pharmaceutical company has got a legal monopoly because they’ve invested money in the research and development costs.

Dr Zweli Mkhize (Minister of Health, KZN): In this province alone, if you were to just treat 15% of the people who are HIV positive and treat them with the sophisticated treatment that we talk about, the triple therapy, the anti-viral therapy as such, you would have to pay more than half the budget of the province which means it is not possible, it’s not affordable at this stage to give that type of treatment. That is where our first problem comes. Now this is why there’s been a big fight to say that the government should find it possible to buy medicines from other countries where it is cheaper because then maybe we could get medicine at a cheaper rate so that you can then give it to people who are not employed.

Narrator: This would be known as Parallel Importing.

Mark Heywood (Head of AIDS Law Project): Now what parallel importing means is that if GlaxoWellcome, for example, sells AZT in England at a price which is cheaper than what they want to sell it in South Africa, then our government may negotiate to buy the AZT from England or from another country rather than Glaxo in South Africa.

Narrator: Government could also use compulsory licensing to obtain cheaper drugs.

Dr Wilbert Bannenberg (WHO Co-ordinator for South African Drug Action Programme): There is a possibility if the price for antiretrovirals are considered too high and under patent legislation in many countries including South Africa to actually look at what we call a compulsory license which is a license that the government can grant to another company and the original patent holder to produce and import the product into South Africa and make it available at a lower cost.

Narrator: But government cannot do compulsory licensing and parallel importing just as they please because South Africa has signed a number of international trade agreements as a member of the World Trade Organisation. Under one of these agreements, called the TRIPS agreement, governments have undertaken to respect the pharmaceutical companies’ patent rights on medicine. However TRIPS says if the prices of specific medicines are abusively high and there is a national emergency situation, governments can use parallel importing and compulsory licensing to get cheaper drugs.

Andy Gray (Department of Pharmacy Lecturer, University of Durban Westville): Parallel importation and compulsory licensing are legal in terms of the TRIPS agreement within certain conditions. And I think manufacturers of drugs worldwide in particularly those from the United States have tried unsuccessfully to argue the opposite to that. But the World Health Organisation in May this year in fact supported the interpretation that health concerns should over-ride pure economic concerns.

Narrator: In 1997 government passed the Medicines and Related Substances Control Amendment Act in order to do parallel importing and compulsory licensing. Almost immediately afterwards, the Pharmaceutical Manufacturers’ Association or the PMA who represent about 40 pharmaceutical companies, many of them multinationals, took government to court.

Mirryena Deeb (CEO of PMASA): The PMA has challenged Act 90 of ’97 and particularly because of the provisions of section 15C which we believe and have argued in our court case, allows the Minister of Health to take away our patent rights. And patent rights is that limited period of exclusivity which enables a pharmaceutical manufacturer or any innovator internationally to recoup their very substantial research in development costs.

Narrator: But why are pharmaceutical companies so up in arms about their patent right?

Mirryena Deeb (CEO of PMASA): To bring a product to the market, it takes around 12 years of research which includes extensive clinical trials and funding of around three to R4 billion to bring one chemical entity successfully into the market as a medicine, as we know to be safe and effective medicine. During that time, right at the very end of your clinical trials you may find that the medicine fails for some or other reason and that money is totally lost.

Narrator: However, some say these claims about high research costs are not always entirely justified.

Andy Gray (Department of Pharmacy Lecturer, University of Durban Westville): Much of the research has been funded by the United States government through the National Institutes of Health and the universities within America and when the product is finally proven to be effective, a license is awarded to a particular company to manufacture it. So there is an argument from many generic manufacturers that the patents held by those companies don’t reflect years of investment but merely reflect their luck to have got their license from the American government.

Narrator: Even where companies have genuinely done research, it is not as simple as that.

Andy Gray (Department of Pharmacy Lecturer, University of Durban Westville): Drug companies put a product onto the market at a price which that market will bare. I think one good piece of proof of that is how prices move when competitor products enter the market. So the pricing is not a simple reflection of input costs, it’s a decision made within companies and the basis of, quite what else is in the market and how that particular economy works.

Justice Edwin Cameron (Person Living with HIV/AIDS): The research and development argument says that drug companies need big profits to be able to explore scientific ways of combating other diseases, HIV and many other diseases which are life-threatening to us on this planet. But it’s not a complete argument in the case of AIDS and HIV. Africa faces a human catastrophe with AIDS. We have nearly 25 million people on our continent, we have AIDS and HIV, four million of them are in our country. This is a special circumstance, whatever the research and development needs, whatever the research and development imperatives and costs of the drug companies, I believe that a special accommodation should be made.

Narrator: The PMA’s response to the argument…

Mirryena Deeb (CEO of PMASA): If we believed that we are a national emergency, would section 15C have our approval? And the answer is no because 15C is, firstly and foremostly, bad law. It ignores the Constitution of South Africa, it ignores the patent act of South Africa, it ignores South Africa’s obligations under TRIPS.

Mark Heywood (Head of AIDS Law Project): Ever since 1997, this act which is a major aspect of our health law transformation has been held up in court and has not been implemented because you can’t implement it while there’s a court challenge.

Narrator: Is this a dead end or are there other options?

Dr Wilbert Bannenberg (WHO Co-ordinator for South African Drug Action Programme): There is no other act which is not in the court case. The South African Patents Act which already allows in article 55 and 56 to issue compulsory licenses. So the court case does not actually limit at the moment the government from issuing a compulsory license.

Narrator: What is government doing? Are they looking into the patent act or any other options to obtain cheaper medicine?

Humphrey Zukufa (Chief Director of Pharmaceutical, Department of Health): If there is a route around the patent’s act, definitely we’ll look at that. If there’s a route around compulsory licensing, if there’s a route around parallel importation or if there’s any other route, it is our responsibility morally and otherwise, for the plight of the patients who are sufferers when it comes to this disease, for the department to investigate those routes.

Narrator: But what action is government actually taking?

Humphrey Zukufa (Chief Director of Pharmaceutical, Department of Health): The department is engaged with talks with various people at various levels and the actual position of which to follow I think will be a result of those particular talks.

Narrator: The pharmaceutical companies say they would not mind if the government uses the patent act if they want to do compulsory licensing because it is a better law. But before government considers using any laws maybe it should first negotiate.

Mirryena Deeb (CEO of PMASA): If they believe that the price is still unaffordable or too high, the way that it’s done around the world and has been done for many, many years is that the government calls in the manufacturers and then negotiate. There could be very few manufacturers who would turn their nose down and not try and accommodate a government where the government is the largest consumer of goods, it’s just economically not feasible. But those approaches to serious negotiations have not taken place and until they take place we can’t take seriously government’s purported claim that they need 15C to make medicine and particularly HIV medication more affordable.

Narrator: Is government really doing enough? Or has the legal tangle become a convenient smoke screen for avoiding the issue?

Fezekile Khuzwayo (Person Living with HIV/AIDS): Claiming that they don’t have money is ridiculous because in the end the economy will suffer and people will suffer because they can’t get these drugs that don’t cost that much. I mean they can advocate for getting patents for certain drugs and just get them cheaper, make them ourselves, they can do that. They have the power to do that but they are not doing it.

Narrator: At the moment, government is blaming the pharmaceutical companies for keeping prices high and holding the act to ransom. The pharmaceutical companies are blaming government for writing vague laws.

Justice Edwin Cameron (Person Living with HIV/AIDS): We have got to find a way of making treatment available through negotiations with the drug companies, through negotiations with the government, through pressure on the drug companies, through pressure on African governments and governments in the northern hemisphere as well. I believe that there is a solution to be found, my friends in the Treatment Action Campaign are constructively addressing those solutions and I hope that we will find them very soon. Lives are being lost unless those solutions can be found.

Mercy Makhalemele: Viewers at home, if we could obtain these medications freely at the world market we could get them a lot cheaper or we could even make them here in South Africa.

Sipho Nhlapo: It is an obvious thing that in any kind of emergency, flood, drought and earthquakes, special assistance is given and the government steps in. The AIDS crisis is just such an emergency, the government has to step in and make these medications available to all people who need them.

Mercy Makhalemele: Sekuyis’khati manje {isiZulu} [The time is now] The HIV/AIDS advocacy group have to get their acts together and unite to bring government and the pharmaceutical companies together to make life-saving medicines more widely available.

Sipho Nhlapo: Next up Faghmeda is talking to Dr Steve about health problems that occur in the min-stages of the HIV disease.

Mercy Makhalemele: After that we have another in our human rights series in which we look at the case of a man who was dismissed from his employment in the SANDF because he tested positive.

Sipho Nhlapo: And Marc will be presenting this week’s Red Noose and Positive Person Award.

Treatment Literacy

Faghmeda Miller: Doctor in the last programme we have discussed the matter of CD4 cells and we have discussed that when your CD4 cells actually drop, so this is where you become more ill, pick up more other illnesses and that. Can you perhaps explain to me how long will it take to get to this point?

Dr Steve Andrews: Faghmeda, different people will progress to different stages of HIV infection at different rates and there are many reasons for this. What is important, however, is to realise as your CD4 count drops you become more susceptible to serious illnesses. Now there is a distinction between what we call AIDS defining illnesses or those illnesses one will only get when one’s CD4 count falls below 200. And serious illnesses such as pneumonias, some forms of infection of the brain, skin diseases et cetera that one can get a mid-stage disease while one’s CD4 count is still high but are not AIDS defining illness.

Faghmeda Miller: So what can one do to improve one’s health and quality of life at this stage?

Dr Steve Andrews: It is important to treat these infections effectively and rapidly. If you do have one of these infections you should see your doctor soon. A lot of people ignore what they think of as mild infections, example of this are things like thrush in the mouth, perhaps thrush in the vagina and leaving these things alone can weaken your body substantially, making HIV progress faster. There are effective treatments for these conditions and getting them soon will change the outcome of your disease.

Faghmeda Miller: So when you get all these diseases, when can you talk about AIDS as such?

Dr Steve Andrews: It is possible to get quite severe illnesses without them being defined as AIDS illnesses. AIDS defining illnesses, of which there is quite a long list, tend to be more severe and more difficult to treat.

Faghmeda Miller: So how long is it actually before AIDS really develops and what can you do to stop things from getting worse?

Dr Steve Andrews: It is as important in this stage of illness as it is in early disease and in fact in late disease, to keep healthy. So eating well, exercising, taking your vitamins, seeing your doctor if you get infections and avoiding stress and keeping a healthy mindset are vital to your ongoing health. Another thing that is important is antiretroviral therapy and I understand that we’ll be discussing that next week.

Human Rights - Discrimination in the SANDF

David: In ’93, I started joining the army, ’93, 29 March. ’96 that’s when it was in January. Hulle sê hulle sal nie kontrak hê nie {Afrikaans} [They said they wouldn’t have a contract], for ten years contract which is medium term. You know my problem is that they never told me that they won’t renew my contract if I’m positive.

Fatima Hassan (Attorney, AIDS Law Project): His contract was removed as a driver transport clerk simply because he was HIV positive.

David: I started thinking, first thing I thought of was committing suicide but I had to be strong, this is my life. I was strong by that time and I said: “No man there’s nothing like this. I don’t know about this, there’s nothing about this, maybe they made a mistake.” I asked the other captain: “What are you going to do with a person’s HIV. Is there anything you are going to do for him or you are going to chase him away?” “I don’t know. Your unit will know what to do.” The unit chases you off onto the street. Then you must see what you can do.” By that time I was not receiving money for food, nothing, I was organising for myself. From there, then the service terminated. June they said end of June, the contract is terminated. It was ’98 now, I’m in ’98 now. “You must take off that uniform. You are a civilian now. Look for work outside.”

Fatima Hassan (Attorney, AIDS Law Project): In March 1997, government announced that all state organs would stop pre-employment HIV testing and that organs such as the South African Police Services and the Department of Correctional Services would have to employ people who are living with HIV and not conduct HIV testing. In addition, members of the SAPS and the Department of Correctional Services are entitled to lodge labour disputes under the Labour Relations Act of the Employment Equity Act whereas the military cannot.

David: Because of HIV, everything, insurances lapses. No money, no food. You ask insurances, no money. I joined SANLAM in ’94, is there anything that I’m going to get, nothing. Ok, if they say I’m a poison, I was going to make things for my kid so that if I die, my kid can have something. Am I wrong? If they chase you into the street, what are you going to do, no money, no food, no clothes. And the kids, if you come home with bare hands, there’s no respect for you because you’ve done nothing for them, you are nothing to them. They go and ask people from the street money: “Don’t you have 20 cents there?” How do you feel you are at home sitting there? Whereas you’ve been working for them and then you’ve just been released from work without any reason. Start sitting at home, planning, people working in the morning and you are alone. What do you think? What comes first into your mind? Steal so that you can have something to eat and something to wear.

Fatima Hassan (Attorney, AIDS Law Project): Members of the military cannot use the Labour Relations Act or the Employment Equity Act as a mechanism, so they cannot get to protect their rights using those two acts. They can, however, use the Constitution and constitutional provisions to protect their interests. They can also use what we call common law administrative review and take the decision of the military to the High Court in our country and review that decision and argue that it is irrational, illogical, improper and unfounded.

David: At the moment I’m living a normal life, I’ve got two kids that are not infected, I’m the one who’s infected.

Fatima Hassan (Attorney, AIDS Law Project): I think the important thing to know is that where people feel grieved and where employees feel grieved by a decision, by any state organ, by any employer, they need to challenge it as soon as possible. There’s various organisations and legal service centres in South Africa which offer free legal assistance for example the Legal Resources Centre which is a national based organisation, Lawyers for Human Rights, all the Legal Aid Clinics at the different universities and NGOs like the AIDS Law Project would be able to offer people living with HIV/AIDS or affected by HIV/AIDS to lodge disputes against employers, doctors, insurance companies, medical aid schemes et cetera.

David: So I’ve been fighting this thing of HIV, if I was HIV positive since ’96, I’ve been fighting till now and I’m still fighting it.

Positive Person and Red Noose Awards

Marc Lottering: Now I must admit I found the programme on the politics behind high drug prices absolutely fascinating. Can you just imagine the frustration of people living with HIV knowing that there are medicines out there that can help, while they are dying simply because drugs are too expensive. And then there’s TRIPS, the Patent Act, the Medicines Act, the court case which drug companies have temporarily suspended against the government and the government which seems reluctant to act. Shew, kilos and kilos of red tape – enough to make your own matric ball dress if you ask me. So this week the Red Noose goes to all those who are hiding behind the red tape or those Red Ribbons while people are getting sick and dying and nothing is being done to make life-saving medicines available. I say take all that red tape, pull it very tightly and see how it feels. And the Positive Person Award this week goes to the following people: to Desiree Booysens and her mom, to Deena Bosch, Dr Hermann Reuter, Thanduxolo Doro, Adelaide Mangcu and all the other volunteers active in the campaign for cheaper drugs, for your determination to make your voices heard and mobilise people in support of the demand for a better deal on drugs and treatment for people with HIV. It’s the warm heart for you.

Narrator: In 1994 less than a million people were HIV positive, 1999 – 3.6 million are living with HIV/AIDS, why? Hate the virus, not the person living with the virus.

Narrator: We must develop local, national and international campaigns that begin to assert that the poor are human, that human rights are non-negotiable, that humanity has a collective responsibility to fight the disease. We must mobilise around the hope and knowledge that working together, we have the power to defeat HIV/AIDS.

Mercy Makhalemele: Well folks, that’s all for this week.

Sipho Nhlapo: And don’t forget to watch our final programme next week.

Mercy Makhalemele: We would really like to be able to bring Beat It! back to the people.

Sipho Nhlapo: So all of you people who have been watching this programme, please write to us or phone us or send us an e-mail at the numbers given below

Mercy Makhalemele: And remember together we will Beat It!

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