South Africa
Your Money or Your Life
May 2001 – 40’
03’41”
Cape town, South Africa. Freed from apartheid, the people have good reason to celebrate. But this new freedom is threatened by the escalating aids problem. More than 4.5 million South Africans are infected with HIV, no less than a quarter of the population. South Africa is at the top of the world list of countries struck by AIDS.
04’05”
These are Bongiwe and her daughter Busi. Bongiwe is 26, she lives in Khayelitsha, one of the townships around Cape town. When she was expecting Busi, she found out that she was HIV positive.
Q : Bongiwe
Since I hear this news that I’m positive, I decided to leave everything because I had no hope that : what is the use of being a student or studying for a degree while I’m going to die ?
04’36”
Further down in Khayelitsha we find Mafundo. Just like Bongiwe, she is 26 and HIV positive.
Q : Mafundo
Maybe in 5 years or 2 years to come you will not be talking to Mafundo again. There will be no Mafundo, you see ? So, those are the things that I always sometimes think. But I don’t want to frustrate myself and think a lot about, because .... the stress. I’ll be stressing myself and the stress is the first enemy of the virus. You see?
5’18”
Africa is not only afflicted by AIDS. There are also the neglected diseases, such as trypanosomiasis or sleeping sickness. A deadly disease, that was virtually eradicated in the late 60’s, but that is back again, striking harder than ever before.
5’36”
The hospital in Omugo, a remote village in the north-east of Uganda. People come a long way to be tested for sleeping sickness in this hospital.
William is one of them. He is 13 and has just arrived with his father.
Sleeping sickness is not easy to diagnose. It requires a number of tests to identify the parasite.
Don’t be afraid.
It’s not painful.
I will do slowly.
Okay?
It’s not painful.
Okay ?
06’06”
And the tests establish proof: William is infected with sleeping sickness, even at a far-advanced stage. Patients who do not get a timely treatment slip into a coma and inevitably die.
06’21”
William and his father go back home to pick up his things. He will return to the hospital to undergo a three weeks’ treatment. A treatment with an archaic drug that is not without risks.
06’41”
Bongiwe used to live in Durban. When she found out that she was pregnant, she and her boyfriend had a fight. Afraid to tell her family that she was HIV-positive, Bongiwe fled to Cape town and moved in with her sister. She has lost contact with her daughter’s father, who does not know that Bongiwe is infected. Her sister does not know, either. That is why we interview Bongiwe outside the house.
Q : Bongiwe
He doesn’t know anything about his child and I also hate him because I believe he’s the one who infected me. So I really hate him. I hate him.
Q : Bongiwe
Before I had this sexual intercourse with him, I told him for several times to go for a HIV test. And he always refused. Why was he refusing if he didn’t aware of anything ? Because he knew that he was already infected. But he wanted to infect me so that he can’t die alone. That is what they always say : that I can’t die alone.
What worries me is that : as it is happen he still have relationships and he keeps on infecting the other people.
07’55”
Besides being a threat to public health, AIDS also has an enormous impact on the economy and development of a country, tearing families apart. Parents fall ill, unable to carry on with their jobs.
Ten years ago, less than 1% of the population in township Khayelitsha was HIV-positive. Today, more than 20 % are infected.
08’15”
Eric Goemaere, a doctor who works in this township, looks upon the situation with sorrow. The treatment of patients with aids is very frustrating.
Q : dr. Eric Goemaere/ Doctors Without Borders (Médecins Sans Frontières)
We treat them only for the so-called opportunistic diseases, mainly fungi diseases and tuberculosis. Various diseases that appear because of the weakened immune system of the patients. So we treat them for those diseases but of course we want to do more, by giving them what they are giving in Europe, in the rich countries: triple-drug therapy, the anti-retrovirals. But the anti-retrovirals are a different problem, a problem of cost.
For us doctors it is totally unacceptable to know this and to see our patients further deteriorate in time. Even if we treat the opportunistic diseases, we see them deteriorate and die away, while we know that there is a treatment that exists.
09’18”
Even though anti-retrovirals - the drugs that slow down the disease - are effective, most of the HIV-patients in the poor countries cannot afford them, as they cost 10.000 US dollars per patient every year. Generic or brand-free versions of the drugs are up to 100 times cheaper. The pharmaceutical companies intend to cut out these competitors, using their patent right to prevent the access to cheap, generic drugs.
Q : Mirryena Deeb/Pharmaceutical Manufacturers Associations (PMA)
There has to be a realistic expectation of where it is industry’s duties begin and where they end. But also a realistic expectation of where government responsibilities begin. And where they end as well. But certainly, we are very aware of the fact that there is enormous suffering in the developing world. We are very aware of the fact that traditionally the market principles that we are allowing for supply and demand will appear in some instances not to work for the developing world diseases. But that is not because there is a fault in the market system, it is a fault of the broader economic ills of the developing countries. I mean it is arguable that for some developing countries no price will be affordable for HIV, or no price might be affordable for any disease whatsoever. When you consider that some of those countries only spend 10 dollars a year per patient on healthcare.
10’46”
On their way home, William and his father are accompanied by Martin, a sleeping sickness assistant at the hospital. William’s family lives 25 kilometres away in a refugee camp. They arrived a few months ago, after having fled from famine-stricken Sudan.
It are these migrations, caused by war and famine, that have contributed to the resurgence of the disease over the past 20 years.
William has all the symptoms of sleeping sickness: he is tired and extremely weak and suffers from sleep disorders, headaches and fever.
- Are you tired ?
I’m tired. I’m tired.
I’m suffering.
My body is tired.
I’m even not able to walk.
My body is weak.
Q : Martin Andama/sleeping sickness assistant
As we have stated, he’s positive. We have got him in stage 2 of the disease, which is the latest stage. So here we can’t delay with him, we want to take him for treatment. Because if we delay it’s going to worsen his life. That’s why we have come to pick the attendant. Of course the father is going to attend the child himself.
12’12”
The father will be the attendant. He will care for William, do the cooking and laundry during the 22 days of the treatment.
Q: Martin Andama/ sleeping sickness assistant
Normally without the attendant we cannot give treatments. Because the drug currently used for treating this stage 2 is toxic and anytime the patient can react.
12’42”
Having collected some clothes and cooking gear, it’s time to make the 25 kilometre journey, back to the hospital.
12’51”
The world-famous Institute for Tropical Medicine in Antwerp, Belgium, is a suitable spot to meet with doctor Giorgio Roscigno. He used to work for the pharmaceutical industry for 20 years and knows it like the back of his hand. Today he leads an organisation that seeks to develop new drugs against tuberculosis. He also belongs to an international group of specialists engaged in finding better drugs for neglected diseases.
Q : dr. Giorgio Roscigno
The pharmaceutical industry has a strong interest in unmet medical needs that can create let’s say profit for the pharmaceutical industry. And if you look at the research programmes of the major research-based pharmaceutical industry today, you discover that most of the resources and the money goes for oncology, cardiology, Alzheimer diseases, and a very small amount if at all goes for diseases like sleeping sickness or leichmania. That is certainly true. But this is because of the nature of the pharmaceutical industry that is accountable to shareholders that want to see profit at the end of the year, and to see the pharmaceutical industry embarking in the very expensive exercise of developing drugs for neglected diseases might not be perceived as the right message for the shareholders of that specific company.
14’18”
In South Africa, AIDS kills 250.000 people every year. Last year, President Mbeki declared that there was no connection between HIV and AIDS, and that AIDS was caused by poverty. A statement that shocked the world.
Q : Mafundo
These people think that if you are HIV-positive that it means you are not going to die of AIDS, as mister Mbeki said. I think mister Mbeki needs to come back and tell the people the right thing.
Q : Mirryena Deeb/Pharmaceutical Manufacturers Associations (PMA)
Well the top leadership in our country questioned in fact whether HIV causes AIDS. Now if you start with that problematic preset, you cannot even get to the negotiating table about how to put together a partnership that benefits everybody. If HIV doesn’t cause AIDS then why do you need our medicines ? Because I can tell you one thing : that internationally our scientists and our products are based on the fact that HIV does cause AIDS. So you see the gulf of the problem.
15’18”
In order to prevent mother-to-child transmission of the virus, a pregnant woman can use AZT, which particularly for developing countries is an extremely expensive drug. The Khayelitsha hospital runs a free AZT distribution programme. At first Bongiwe would have nothing to do with it.
Q : Bongiwe
I didn’t want to take AZT because I knew that I was HIV-positive and definitely I knew that there is no choice or treatment for it. And I was aware that I’m going to die. As I heard the information that I’m going to die, I didn’t want to die alone and leaving my child orphaned. I wanted her also to die so that I won’t leave anything in the world.
- But then you took AZT ?
And then I decided to take it. And now I’m so grateful because my child is negative and I can only think of giving her up for adoption after I’m getting very ill.
16’28”
Back in Uganda. As a sleeping sickness assistant, Martin is on the road every day, searching for infected people.
16’37”
But first he takes us to the river, which is the focal point of sleeping sickness in the region.
Q : Martin Andama/sleeping sickness assistant
This is a sort of river where most children come to take a bath. And women also they come to fetch water here, for either cooking or washing clothes. The tsetse flies, as they live along the riverbanks , when they see this women and the children they come and they bite them. And if the tsetse fly who bites that group of people, is an infected one, then it inject the disease in them. That’s why you find most of the communities here, they have the disease.
17’19”
The tsetse fly transmits the parasite that causes sleeping sickness. The number of infected people in Africa today is estimated at half a million.
These people should be traced and treated as soon as possible, since they are the ones who carry the parasite that may be further transmitted by the tsetse fly.
Q : Martin Andama/sleeping sickness assistant
We go from neighbourhood to neighbourhood to give information because it is necessary to give information for the community. Because most of them think sleeping sickness is spread when you eat pork and when you sexual stay with your partner and witchcraft can also give the disease. We give the information for them. And we also feel the nodes. If the nodes are positive we send them to the hospital to be tested against sleeping sickness.
18’20”
Swollen lymph nodes are one of the first symptoms of sleeping sickness. Once diagnosis is confirmed treatment can start. There is, however, only one drug available for sleeping sickness, which goes back to the 1940’s, is toxic and is increasingly ineffective.
Q : dr. Giorgio Roscigno
Sleeping sickness is quite an important disease in African countries, still it affects a relatively small number of people, we are talking of maybe half a million people per year. And this obviously does not represent any return of investment for any pharmaceutical industry.
I’m miss Tegula.
I’m from Treatment
Action Campaign.
We are giving education
to students, to pupils,
to everybody, to teachers
also, about HIV and AIDS.
Prevention and awareness,
and treatment.
Do you know anything on
HIV and AIDS ?
Who can tell me ?
Anything that you know
about HIV and AIDS.
19’33”
Treatment Action Campaign, or TAC, is a South African organisation of HIV and AIDS-patients that defends the right to affordable medicines. Bongiwe and Mafundo are two of the most militant TAC-members.
AIDS is very dangerous.
What can you say?
AIDS has killed many people.
AIDS has killed many people.
Is he lying ?
No !
19’59”
Today is the first time Bongiwe speaks in public about her status.
I gave birth to a healthy baby.
My child is now 1 year and 7 months.
And she’s negative while I’m positive.
But I’m not comfortable because
I know that at some stage I might die.
So who’s going to take responsibility
of her after I am dead ?
So that fact is worrying me
It is not really nice to be HIV-positive
So take responsibility of yourself.
That’s my message to you.
Q : Bongiwe
It was ok. It wasn’t difficult. Even though it was my first time to disclose in public. Because I’m used to disclose in the support groups. So it was really my first time and I didn’t get any problems. I did enjoy it. So I think I‘ll keep on disclosing. It is not so difficult to disclose and I think I’m strong enough now. I can face the public and their questions also.
21’05”
In Omugo the medical team is about to make their daily rounds of the hospital.
My friend, how are you?
You’re doing well?
I’m doing well
That’s good
21’19”
William has spent his first night in the hospital. Now it will be decided when his treatment is going to start. Olema, the head of the medical team, is not a doctor, but a sleeping sickness coordinator.
Olema’s many years’ experience has made him the sleeping sickness specialist for the whole region.
Hm hm. This one we admitted yesterday. He’s a stage 2. And if you can see this boy William : he’s quite weak, he does not talk very clearly, he walks with a support, his feeding is also assisted. And I think the treatment that he’s going to get is Melarsoprol, which is also a very toxic drug. Because something wrong and the drug react , he may have a reaction, a side-effect to the drug. We really need to take a lot of precautions. But there is no way we can help him other than giving him the drug, even though it is toxic; because that’s the only option we have.
22’23”
For 60 years already Melarsoprol has been the only available drug. There are two possible alternative drugs, but these are either virtually impossible to get or have never been effectively tested. In view of the apparent general lack of interest in sleeping sickness, in Omugo they started looking for more appropriate treatments themselves, combining the three drugs.
Patients that we are putting on the trial they must always fulfil, they must not be lost follow-up. And the boy is a refugee. Anytime he may feel going back to Sudan, we may not end up his control successfully. So he may be a loss to follow-up. So for this reasons we are not including him for the moment. We just have to predispose him to the toxic drug like that but of course, keep our fingers crossed that nothing wrong happens with him. Because there is no option.
We really wish him the best.
William !
Q : dr. Giorgio Roscigno
In the context of the north the intellectual property right has certainly been the engine for discovery of new drugs for diseases that were otherwise untreatable. Now when you try to apply this intellectual property right to developing countries, that’s where you find these clashes. So, I’m not sure that it is because of that law that the pharmaceutical industry do not invest in research for neglected diseases. I think that that doesn’t happen mainly because there is no profit in developing those drugs, and there is a need for industry to take a social responsibility to develop these drugs for neglected diseases.
24’28”
More than 500 anti-retroviral experiments are said to be carried out in South Africa today, turning the country into the pharmaceutical industry’s playground. After having been tested in South Africa, the new drugs are sold at a high price, be it hardly ever within the country itself, because the great majority of the population cannot afford to buy them. Talk about a paradox! And that is not quite the whole story.
Q : Mirryena Deeb/ Pharmaceutical Manufacturers Associations (PMA)
The medicines control council is making allegations that we don’t observe standards and we’re treating people like guinea pigs and that when the trial stops that they don’t have the medication for life. And that is simply not true. We are bound by something called the Helsinki declaration, in the conduct of clinical trials. And those guidelines are very strict and stringent. And certainly the members who belonged to the PMA, have to abide by those. If we have a hint that they are not observing Helsinki declaration, they will not be members of the PMA.
25’26”
Bongiwe is a volunteer in one of those clinical trials. She is being administered anti-retrovirals.
Q : Bongiwe
I’m lucky because I was chosen to be under those clinical trials. And, as I already said, I started in late ’99
after giving birth to my child and I was told that the clinical trials would last only for two years. But I’m still under those trials. And they already told me that if I become resistant to the treatment, they will change it to another one.
25’59”
In this medical centre Bongiwe gets her treatment. The question is, whether also after the experiment, Bongiwe will get further any treatment. Not only does the Helsinki Declaration remain vague on this subject. Nobody in the medical centre wanted to speak to us.
Q : dr. Eric Goemaere/Doctors Without Borders (Médecins Sans Frontières)
The example of Bongiwe is the most unbearable example of the cynicism of this situation. Bongiwe does not have a choice. She knows that she is going to die shortly.
She is barely 20 years old, and she wants to survive.
Therefore she will seize any opportunity
We even regularly send ill people to these therapeutic experiments
Because, we say, it is better than nothing
She will indeed have a right to a treatment that will make her survive for another 2, maybe 3 years.
Q : Bongiwe
I don’t think they will stop the treatment. But they said they will give me another treatment so that I don’t develop resistance to this one that I’m taking. So they didn’t say that they will stop it completely.
Q : dr. Eric Goemaere/ Doctors Without Borders (Médecins Sans Frontières)
The rule is: as long as the treatment is effective. But after a while, when her body will not react correctly any more, she won’t be offered anything else instead. She will be removed from the therapeutic experiment, and at that moment, they will leave her to fend for herself.
And it is out of the question that at that moment she will start buying those drugs herself. So that will be the end.
27’29”
There is a need for new drugs against sleeping sickness. The development of such a drug requires research and investments by the pharmaceutical industry. But since a market of patients who cannot afford the drugs is not lucrative, hardly any research is done.
Q : Olema Erphas/ Sleeping Sickness Coordinator
If this disease was in Europe, by now it could have been a disease under control. It could have been a disease under control, once you get it and you are treated just outright without much problems. There would have been so much concern. But because it is an African problem, I think there is that problem of not really exposing it further, to the European world for concern.
(SINGING)
The people of TAC prosecute
the pharmaceutical industry.
28’19”
The TAC-activists are preparing for a large demonstration in Pretoria, where an important court case is about to start. 39 pharmaceutical companies filed a complaint against the South African government, who 4 years ago, passed a law allowing importation and production of affordable drugs. The TAC-members are anxious to know the result of the lawsuit. For them, this is a matter of life and death.
Q : Mafundo
It is a very serious subject.
But we control ourselves.
Because if you can live
thinking of the virus
in our body then it means
that we are not going
to frustrate ourselves.
Q : Bongiwe
This is in memory of those who have left us because of this HIV and AIDS, because they cannot afford the prices of the treatment because there are so high. So I really don’t like what is happening here in South Africa. Because each and every day people are dying because of this HIV and AIDS thing. So we are fighting for the drug companies to reduce their prices.
- But that’s a sad symbol no ?
Yeah. It is a sad symbol. We are also sad. I know that one day it will be me. It will not be like these names.
It will be my name. That’s why I’m so worried and keep on fighting for these drugs to be affordable.
Q : dr. Giorgio Roscigno
The fact that so quickly drugs have been developed to treat HIV has very much to do with the fact that most patients at the beginning of the world epidemic were discovered in the north, in the US and Europe. So certainly the fact that we are now facing these concomitant epidemics in the North and in the South that can be treated with the same drugs that are let’s say protected by the intellectual property right in the north and the fact that these drugs are not available in the south is certainly the first very big crisis in international health, it never happened before, because the diseases prevalent in the north were not the diseases prevalent in the south. So this combination, this coincidence of these two epidemics and the fact that the tools available are now the ones discovered in the north is creating this inequality and this certainly has to be corrected.
(MUSIC)
31’15”
The Pretoria Supreme Court. The start of the court case ‘Pharmaceutical Industry versus the South African Government’ attracts a great deal of attention.
Q : Zackie Achmat/Treatment Action Campaign (TAC)
I think this is probably one of the most important days in our history because the outcome of this case will decide if we get access to medicines or not. It will also place a responsibility, a constitutional responsibility on our government to provide access to medicines for all people in South Africa and in particular people with HIV and AIDS.
31’44”
The main issue of the court case is a law allowing the importation and manufacturing of affordable drugs. According to the pharmaceutical companies, this law is a violation of their patent right and of the World Trade Organisation’s regulations. The lawsuit has been blocked the law’s application for 4 years already.
Q : Mirryena Deeb/Pharmaceutical Manufacturers Associations (PMA)
We are going to court not to stop access to HIV medicine, we are going there to insure that the rule of law is observed and that in fact access takes place through constitutional means and in orderly fashion. Because if it doesn’t, it makes our ability to actually help in the future or to partner and supply good quality medicines almost impossible. And South Africa has more to lose from an exit of the pharmaceutical companies and people, investors, are very weary of a country which doesn’t respect the rule of law.
Q : Ayenda Saluba/Director-General Public Health
If we had been able to pass this law 3 years ago, I ‘m sure we would be now in a position to do more for our people. That’s why this act is so important for us.
Q : Mirryena Deeb/ Pharmaceutical Manufacturers Associations (PMA)
This isn’t about access to medicine. The government has everything it claims it needs in existing law. All that is missing really, is political will and political commitment.
Q : Ayenda Saluba/Director-General Public Health
We are happy that on this particular issue together with many organisations in South African, we are working together, because it is important for us as we challenge some of this major decisions that we do those things together. And as I say : indeed, one wishes the act, these pharmaceutical companies they have not taken the course that they have taken. Because I’m sure by now perhaps more South African lives would have been saved.
(MUSIC)
Q : Bongiwe
I’m very happy. I’m very happy. Because the drug companies are really abusing their patents. They want us to die. They have the drugs but they don’t want to give us the drugs. They don’t want to lower the prices. So I’m supporting our government today.
(MUSIC)
Q : Zackie Achmat/Treatment Action Campaign (TAC)
Even if we are losing this court and even if we lose in court, we will succeed some day. There is no doubt in my mind. Because we have got the right on our side. There is not a single major civil society body who has defended the rights of the pharmaceutical companies to profiteer from people’s lives. And so for us in the end this case is just about a very simple thing : it is about life or greed, nothing else, life or greed.
(MUSIC)
34’45”
It is early morning. The Omugo hospital is awaking. Today is a decisive day for William: the start of his treatment, the first injection.
William ! How are you?
Wake up ! Wake up!
Q : Olema Erphas/Sleeping Sickness Coordinator
Today is the day we are going to start giving this boy Melarsoprol. And this is a drug which has a burning sensation. It’s a very toxic drug and as we administer the drug the boy will show some signs of pain.
35’26”
Melarsoprol contains arsenic. It can have serious side-effects and sometimes leads to death. What it boils down to is that the patient first has to survive the drug.
William. William !
William. Slowly.
Q : Olema Erphas/ Sleeping Sickness Coordinator
This drugs tends to destroy the veins each time we administer it, it has a destructing effect to the vessels. At the same time it also has some reacting effects to the patient. So this is the beginning of the treatment for the boy. We are not sure how the boy will present, but from now we have to really be observing him very closely after every two hours to see his ways of living, how he’s eating, so that we really catch up with how he is progressing with this treatment. This is just basically because of the toxic side-effect of the drug that we fear.
36’42”
The Melarsoprol injection is a painful experience and its side-effects can be life-threatening. What is more, the drug does not guarantee the patient’s recovery.
Q : Olema Erphas/ Sleeping Sickness Coordinator
The problem we see with most of these patients is : once we have treated them like this and they go home they still feel very sick and they lose interest to come back to us. Because they know we don’t have any option. Any other option to help them any better, apart from sending them home and dying there.
There is no choice for them. 30% of all stage 2 cases are resistant to the drug we are administering. So we are losing a lot of people despite administering this drug.
37’31”
On the first day of the trial the court session is adjourned.
On being asked to provide evidence on why their drug prices are so high, the pharmaceutical companies request more time to collect the information required.
Q : dr. Eric Goemaere/Doctors Without Borders (Médecins Sans Frontières)
I think there are a lot of people, I hope even a few thousands.
I do not manage to see…
But I think it is a success. If anything, this proves that the street is out here to defend its rights. A lot of people here are HIV positive and they have come here to defend their rights. And to demand a treatment. Facing the courthouse. Which is indeed symbolic. And they demand a treatment to be able to survive. They demand to survive. But they are stopped, because their rights are being placed second to profits. Look, this says it all (:’Lives Before Profits’). I think this summarizes everything.
(FADE TO BLACK)
38’27”
Six weeks later, just before the reopening of the trial, the pharmaceutical industry drops the case. In return the Government promises to consult the industry on the introduction in South Africa of affordable drugs and to respect the World Trade Organisation’s regulations.
End of the case, and a victory for the government, the aids-activists and the patients.
Q : dr. Giorgio Roscigno
In the same time it is only the first battle of a very long war and this war will now come into its most difficult part, because it is now the time for governments of African countries to take the responsibility of making sure that these drugs will really be available, and develop through an international collaboration. all those infrastructures that in Africa are needed to make sure that these drugs are distributed in a safe, effective way.
39’22”
Two days after his first injection William dies from the effects of his treatment.
(FADE TO BLACK)
TITLES - a film by Michel Peremans
- camera/sound : Frank Schulte
- editing : Bert Jacobs
- mixing : Jan Deca
Your Money or Your Life
May 2001 – 40’
03’41”
Cape town, South Africa. Freed from apartheid, the people have good reason to celebrate. But this new freedom is threatened by the escalating aids problem. More than 4.5 million South Africans are infected with HIV, no less than a quarter of the population. South Africa is at the top of the world list of countries struck by AIDS.
04’05”
These are Bongiwe and her daughter Busi. Bongiwe is 26, she lives in Khayelitsha, one of the townships around Cape town. When she was expecting Busi, she found out that she was HIV positive.
Q : Bongiwe
Since I hear this news that I’m positive, I decided to leave everything because I had no hope that : what is the use of being a student or studying for a degree while I’m going to die ?
04’36”
Further down in Khayelitsha we find Mafundo. Just like Bongiwe, she is 26 and HIV positive.
Q : Mafundo
Maybe in 5 years or 2 years to come you will not be talking to Mafundo again. There will be no Mafundo, you see ? So, those are the things that I always sometimes think. But I don’t want to frustrate myself and think a lot about, because .... the stress. I’ll be stressing myself and the stress is the first enemy of the virus. You see?
5’18”
Africa is not only afflicted by AIDS. There are also the neglected diseases, such as trypanosomiasis or sleeping sickness. A deadly disease, that was virtually eradicated in the late 60’s, but that is back again, striking harder than ever before.
5’36”
The hospital in Omugo, a remote village in the north-east of Uganda. People come a long way to be tested for sleeping sickness in this hospital.
William is one of them. He is 13 and has just arrived with his father.
Sleeping sickness is not easy to diagnose. It requires a number of tests to identify the parasite.
Don’t be afraid.
It’s not painful.
I will do slowly.
Okay?
It’s not painful.
Okay ?
06’06”
And the tests establish proof: William is infected with sleeping sickness, even at a far-advanced stage. Patients who do not get a timely treatment slip into a coma and inevitably die.
06’21”
William and his father go back home to pick up his things. He will return to the hospital to undergo a three weeks’ treatment. A treatment with an archaic drug that is not without risks.
06’41”
Bongiwe used to live in Durban. When she found out that she was pregnant, she and her boyfriend had a fight. Afraid to tell her family that she was HIV-positive, Bongiwe fled to Cape town and moved in with her sister. She has lost contact with her daughter’s father, who does not know that Bongiwe is infected. Her sister does not know, either. That is why we interview Bongiwe outside the house.
Q : Bongiwe
He doesn’t know anything about his child and I also hate him because I believe he’s the one who infected me. So I really hate him. I hate him.
Q : Bongiwe
Before I had this sexual intercourse with him, I told him for several times to go for a HIV test. And he always refused. Why was he refusing if he didn’t aware of anything ? Because he knew that he was already infected. But he wanted to infect me so that he can’t die alone. That is what they always say : that I can’t die alone.
What worries me is that : as it is happen he still have relationships and he keeps on infecting the other people.
07’55”
Besides being a threat to public health, AIDS also has an enormous impact on the economy and development of a country, tearing families apart. Parents fall ill, unable to carry on with their jobs.
Ten years ago, less than 1% of the population in township Khayelitsha was HIV-positive. Today, more than 20 % are infected.
08’15”
Eric Goemaere, a doctor who works in this township, looks upon the situation with sorrow. The treatment of patients with aids is very frustrating.
Q : dr. Eric Goemaere/ Doctors Without Borders (Médecins Sans Frontières)
We treat them only for the so-called opportunistic diseases, mainly fungi diseases and tuberculosis. Various diseases that appear because of the weakened immune system of the patients. So we treat them for those diseases but of course we want to do more, by giving them what they are giving in Europe, in the rich countries: triple-drug therapy, the anti-retrovirals. But the anti-retrovirals are a different problem, a problem of cost.
For us doctors it is totally unacceptable to know this and to see our patients further deteriorate in time. Even if we treat the opportunistic diseases, we see them deteriorate and die away, while we know that there is a treatment that exists.
09’18”
Even though anti-retrovirals - the drugs that slow down the disease - are effective, most of the HIV-patients in the poor countries cannot afford them, as they cost 10.000 US dollars per patient every year. Generic or brand-free versions of the drugs are up to 100 times cheaper. The pharmaceutical companies intend to cut out these competitors, using their patent right to prevent the access to cheap, generic drugs.
Q : Mirryena Deeb/Pharmaceutical Manufacturers Associations (PMA)
There has to be a realistic expectation of where it is industry’s duties begin and where they end. But also a realistic expectation of where government responsibilities begin. And where they end as well. But certainly, we are very aware of the fact that there is enormous suffering in the developing world. We are very aware of the fact that traditionally the market principles that we are allowing for supply and demand will appear in some instances not to work for the developing world diseases. But that is not because there is a fault in the market system, it is a fault of the broader economic ills of the developing countries. I mean it is arguable that for some developing countries no price will be affordable for HIV, or no price might be affordable for any disease whatsoever. When you consider that some of those countries only spend 10 dollars a year per patient on healthcare.
10’46”
On their way home, William and his father are accompanied by Martin, a sleeping sickness assistant at the hospital. William’s family lives 25 kilometres away in a refugee camp. They arrived a few months ago, after having fled from famine-stricken Sudan.
It are these migrations, caused by war and famine, that have contributed to the resurgence of the disease over the past 20 years.
William has all the symptoms of sleeping sickness: he is tired and extremely weak and suffers from sleep disorders, headaches and fever.
- Are you tired ?
I’m tired. I’m tired.
I’m suffering.
My body is tired.
I’m even not able to walk.
My body is weak.
Q : Martin Andama/sleeping sickness assistant
As we have stated, he’s positive. We have got him in stage 2 of the disease, which is the latest stage. So here we can’t delay with him, we want to take him for treatment. Because if we delay it’s going to worsen his life. That’s why we have come to pick the attendant. Of course the father is going to attend the child himself.
12’12”
The father will be the attendant. He will care for William, do the cooking and laundry during the 22 days of the treatment.
Q: Martin Andama/ sleeping sickness assistant
Normally without the attendant we cannot give treatments. Because the drug currently used for treating this stage 2 is toxic and anytime the patient can react.
12’42”
Having collected some clothes and cooking gear, it’s time to make the 25 kilometre journey, back to the hospital.
12’51”
The world-famous Institute for Tropical Medicine in Antwerp, Belgium, is a suitable spot to meet with doctor Giorgio Roscigno. He used to work for the pharmaceutical industry for 20 years and knows it like the back of his hand. Today he leads an organisation that seeks to develop new drugs against tuberculosis. He also belongs to an international group of specialists engaged in finding better drugs for neglected diseases.
Q : dr. Giorgio Roscigno
The pharmaceutical industry has a strong interest in unmet medical needs that can create let’s say profit for the pharmaceutical industry. And if you look at the research programmes of the major research-based pharmaceutical industry today, you discover that most of the resources and the money goes for oncology, cardiology, Alzheimer diseases, and a very small amount if at all goes for diseases like sleeping sickness or leichmania. That is certainly true. But this is because of the nature of the pharmaceutical industry that is accountable to shareholders that want to see profit at the end of the year, and to see the pharmaceutical industry embarking in the very expensive exercise of developing drugs for neglected diseases might not be perceived as the right message for the shareholders of that specific company.
14’18”
In South Africa, AIDS kills 250.000 people every year. Last year, President Mbeki declared that there was no connection between HIV and AIDS, and that AIDS was caused by poverty. A statement that shocked the world.
Q : Mafundo
These people think that if you are HIV-positive that it means you are not going to die of AIDS, as mister Mbeki said. I think mister Mbeki needs to come back and tell the people the right thing.
Q : Mirryena Deeb/Pharmaceutical Manufacturers Associations (PMA)
Well the top leadership in our country questioned in fact whether HIV causes AIDS. Now if you start with that problematic preset, you cannot even get to the negotiating table about how to put together a partnership that benefits everybody. If HIV doesn’t cause AIDS then why do you need our medicines ? Because I can tell you one thing : that internationally our scientists and our products are based on the fact that HIV does cause AIDS. So you see the gulf of the problem.
15’18”
In order to prevent mother-to-child transmission of the virus, a pregnant woman can use AZT, which particularly for developing countries is an extremely expensive drug. The Khayelitsha hospital runs a free AZT distribution programme. At first Bongiwe would have nothing to do with it.
Q : Bongiwe
I didn’t want to take AZT because I knew that I was HIV-positive and definitely I knew that there is no choice or treatment for it. And I was aware that I’m going to die. As I heard the information that I’m going to die, I didn’t want to die alone and leaving my child orphaned. I wanted her also to die so that I won’t leave anything in the world.
- But then you took AZT ?
And then I decided to take it. And now I’m so grateful because my child is negative and I can only think of giving her up for adoption after I’m getting very ill.
16’28”
Back in Uganda. As a sleeping sickness assistant, Martin is on the road every day, searching for infected people.
16’37”
But first he takes us to the river, which is the focal point of sleeping sickness in the region.
Q : Martin Andama/sleeping sickness assistant
This is a sort of river where most children come to take a bath. And women also they come to fetch water here, for either cooking or washing clothes. The tsetse flies, as they live along the riverbanks , when they see this women and the children they come and they bite them. And if the tsetse fly who bites that group of people, is an infected one, then it inject the disease in them. That’s why you find most of the communities here, they have the disease.
17’19”
The tsetse fly transmits the parasite that causes sleeping sickness. The number of infected people in Africa today is estimated at half a million.
These people should be traced and treated as soon as possible, since they are the ones who carry the parasite that may be further transmitted by the tsetse fly.
Q : Martin Andama/sleeping sickness assistant
We go from neighbourhood to neighbourhood to give information because it is necessary to give information for the community. Because most of them think sleeping sickness is spread when you eat pork and when you sexual stay with your partner and witchcraft can also give the disease. We give the information for them. And we also feel the nodes. If the nodes are positive we send them to the hospital to be tested against sleeping sickness.
18’20”
Swollen lymph nodes are one of the first symptoms of sleeping sickness. Once diagnosis is confirmed treatment can start. There is, however, only one drug available for sleeping sickness, which goes back to the 1940’s, is toxic and is increasingly ineffective.
Q : dr. Giorgio Roscigno
Sleeping sickness is quite an important disease in African countries, still it affects a relatively small number of people, we are talking of maybe half a million people per year. And this obviously does not represent any return of investment for any pharmaceutical industry.
I’m miss Tegula.
I’m from Treatment
Action Campaign.
We are giving education
to students, to pupils,
to everybody, to teachers
also, about HIV and AIDS.
Prevention and awareness,
and treatment.
Do you know anything on
HIV and AIDS ?
Who can tell me ?
Anything that you know
about HIV and AIDS.
19’33”
Treatment Action Campaign, or TAC, is a South African organisation of HIV and AIDS-patients that defends the right to affordable medicines. Bongiwe and Mafundo are two of the most militant TAC-members.
AIDS is very dangerous.
What can you say?
AIDS has killed many people.
AIDS has killed many people.
Is he lying ?
No !
19’59”
Today is the first time Bongiwe speaks in public about her status.
I gave birth to a healthy baby.
My child is now 1 year and 7 months.
And she’s negative while I’m positive.
But I’m not comfortable because
I know that at some stage I might die.
So who’s going to take responsibility
of her after I am dead ?
So that fact is worrying me
It is not really nice to be HIV-positive
So take responsibility of yourself.
That’s my message to you.
Q : Bongiwe
It was ok. It wasn’t difficult. Even though it was my first time to disclose in public. Because I’m used to disclose in the support groups. So it was really my first time and I didn’t get any problems. I did enjoy it. So I think I‘ll keep on disclosing. It is not so difficult to disclose and I think I’m strong enough now. I can face the public and their questions also.
21’05”
In Omugo the medical team is about to make their daily rounds of the hospital.
My friend, how are you?
You’re doing well?
I’m doing well
That’s good
21’19”
William has spent his first night in the hospital. Now it will be decided when his treatment is going to start. Olema, the head of the medical team, is not a doctor, but a sleeping sickness coordinator.
Olema’s many years’ experience has made him the sleeping sickness specialist for the whole region.
Hm hm. This one we admitted yesterday. He’s a stage 2. And if you can see this boy William : he’s quite weak, he does not talk very clearly, he walks with a support, his feeding is also assisted. And I think the treatment that he’s going to get is Melarsoprol, which is also a very toxic drug. Because something wrong and the drug react , he may have a reaction, a side-effect to the drug. We really need to take a lot of precautions. But there is no way we can help him other than giving him the drug, even though it is toxic; because that’s the only option we have.
22’23”
For 60 years already Melarsoprol has been the only available drug. There are two possible alternative drugs, but these are either virtually impossible to get or have never been effectively tested. In view of the apparent general lack of interest in sleeping sickness, in Omugo they started looking for more appropriate treatments themselves, combining the three drugs.
Patients that we are putting on the trial they must always fulfil, they must not be lost follow-up. And the boy is a refugee. Anytime he may feel going back to Sudan, we may not end up his control successfully. So he may be a loss to follow-up. So for this reasons we are not including him for the moment. We just have to predispose him to the toxic drug like that but of course, keep our fingers crossed that nothing wrong happens with him. Because there is no option.
We really wish him the best.
William !
Q : dr. Giorgio Roscigno
In the context of the north the intellectual property right has certainly been the engine for discovery of new drugs for diseases that were otherwise untreatable. Now when you try to apply this intellectual property right to developing countries, that’s where you find these clashes. So, I’m not sure that it is because of that law that the pharmaceutical industry do not invest in research for neglected diseases. I think that that doesn’t happen mainly because there is no profit in developing those drugs, and there is a need for industry to take a social responsibility to develop these drugs for neglected diseases.
24’28”
More than 500 anti-retroviral experiments are said to be carried out in South Africa today, turning the country into the pharmaceutical industry’s playground. After having been tested in South Africa, the new drugs are sold at a high price, be it hardly ever within the country itself, because the great majority of the population cannot afford to buy them. Talk about a paradox! And that is not quite the whole story.
Q : Mirryena Deeb/ Pharmaceutical Manufacturers Associations (PMA)
The medicines control council is making allegations that we don’t observe standards and we’re treating people like guinea pigs and that when the trial stops that they don’t have the medication for life. And that is simply not true. We are bound by something called the Helsinki declaration, in the conduct of clinical trials. And those guidelines are very strict and stringent. And certainly the members who belonged to the PMA, have to abide by those. If we have a hint that they are not observing Helsinki declaration, they will not be members of the PMA.
25’26”
Bongiwe is a volunteer in one of those clinical trials. She is being administered anti-retrovirals.
Q : Bongiwe
I’m lucky because I was chosen to be under those clinical trials. And, as I already said, I started in late ’99
after giving birth to my child and I was told that the clinical trials would last only for two years. But I’m still under those trials. And they already told me that if I become resistant to the treatment, they will change it to another one.
25’59”
In this medical centre Bongiwe gets her treatment. The question is, whether also after the experiment, Bongiwe will get further any treatment. Not only does the Helsinki Declaration remain vague on this subject. Nobody in the medical centre wanted to speak to us.
Q : dr. Eric Goemaere/Doctors Without Borders (Médecins Sans Frontières)
The example of Bongiwe is the most unbearable example of the cynicism of this situation. Bongiwe does not have a choice. She knows that she is going to die shortly.
She is barely 20 years old, and she wants to survive.
Therefore she will seize any opportunity
We even regularly send ill people to these therapeutic experiments
Because, we say, it is better than nothing
She will indeed have a right to a treatment that will make her survive for another 2, maybe 3 years.
Q : Bongiwe
I don’t think they will stop the treatment. But they said they will give me another treatment so that I don’t develop resistance to this one that I’m taking. So they didn’t say that they will stop it completely.
Q : dr. Eric Goemaere/ Doctors Without Borders (Médecins Sans Frontières)
The rule is: as long as the treatment is effective. But after a while, when her body will not react correctly any more, she won’t be offered anything else instead. She will be removed from the therapeutic experiment, and at that moment, they will leave her to fend for herself.
And it is out of the question that at that moment she will start buying those drugs herself. So that will be the end.
27’29”
There is a need for new drugs against sleeping sickness. The development of such a drug requires research and investments by the pharmaceutical industry. But since a market of patients who cannot afford the drugs is not lucrative, hardly any research is done.
Q : Olema Erphas/ Sleeping Sickness Coordinator
If this disease was in Europe, by now it could have been a disease under control. It could have been a disease under control, once you get it and you are treated just outright without much problems. There would have been so much concern. But because it is an African problem, I think there is that problem of not really exposing it further, to the European world for concern.
(SINGING)
The people of TAC prosecute
the pharmaceutical industry.
28’19”
The TAC-activists are preparing for a large demonstration in Pretoria, where an important court case is about to start. 39 pharmaceutical companies filed a complaint against the South African government, who 4 years ago, passed a law allowing importation and production of affordable drugs. The TAC-members are anxious to know the result of the lawsuit. For them, this is a matter of life and death.
Q : Mafundo
It is a very serious subject.
But we control ourselves.
Because if you can live
thinking of the virus
in our body then it means
that we are not going
to frustrate ourselves.
Q : Bongiwe
This is in memory of those who have left us because of this HIV and AIDS, because they cannot afford the prices of the treatment because there are so high. So I really don’t like what is happening here in South Africa. Because each and every day people are dying because of this HIV and AIDS thing. So we are fighting for the drug companies to reduce their prices.
- But that’s a sad symbol no ?
Yeah. It is a sad symbol. We are also sad. I know that one day it will be me. It will not be like these names.
It will be my name. That’s why I’m so worried and keep on fighting for these drugs to be affordable.
Q : dr. Giorgio Roscigno
The fact that so quickly drugs have been developed to treat HIV has very much to do with the fact that most patients at the beginning of the world epidemic were discovered in the north, in the US and Europe. So certainly the fact that we are now facing these concomitant epidemics in the North and in the South that can be treated with the same drugs that are let’s say protected by the intellectual property right in the north and the fact that these drugs are not available in the south is certainly the first very big crisis in international health, it never happened before, because the diseases prevalent in the north were not the diseases prevalent in the south. So this combination, this coincidence of these two epidemics and the fact that the tools available are now the ones discovered in the north is creating this inequality and this certainly has to be corrected.
(MUSIC)
31’15”
The Pretoria Supreme Court. The start of the court case ‘Pharmaceutical Industry versus the South African Government’ attracts a great deal of attention.
Q : Zackie Achmat/Treatment Action Campaign (TAC)
I think this is probably one of the most important days in our history because the outcome of this case will decide if we get access to medicines or not. It will also place a responsibility, a constitutional responsibility on our government to provide access to medicines for all people in South Africa and in particular people with HIV and AIDS.
31’44”
The main issue of the court case is a law allowing the importation and manufacturing of affordable drugs. According to the pharmaceutical companies, this law is a violation of their patent right and of the World Trade Organisation’s regulations. The lawsuit has been blocked the law’s application for 4 years already.
Q : Mirryena Deeb/Pharmaceutical Manufacturers Associations (PMA)
We are going to court not to stop access to HIV medicine, we are going there to insure that the rule of law is observed and that in fact access takes place through constitutional means and in orderly fashion. Because if it doesn’t, it makes our ability to actually help in the future or to partner and supply good quality medicines almost impossible. And South Africa has more to lose from an exit of the pharmaceutical companies and people, investors, are very weary of a country which doesn’t respect the rule of law.
Q : Ayenda Saluba/Director-General Public Health
If we had been able to pass this law 3 years ago, I ‘m sure we would be now in a position to do more for our people. That’s why this act is so important for us.
Q : Mirryena Deeb/ Pharmaceutical Manufacturers Associations (PMA)
This isn’t about access to medicine. The government has everything it claims it needs in existing law. All that is missing really, is political will and political commitment.
Q : Ayenda Saluba/Director-General Public Health
We are happy that on this particular issue together with many organisations in South African, we are working together, because it is important for us as we challenge some of this major decisions that we do those things together. And as I say : indeed, one wishes the act, these pharmaceutical companies they have not taken the course that they have taken. Because I’m sure by now perhaps more South African lives would have been saved.
(MUSIC)
Q : Bongiwe
I’m very happy. I’m very happy. Because the drug companies are really abusing their patents. They want us to die. They have the drugs but they don’t want to give us the drugs. They don’t want to lower the prices. So I’m supporting our government today.
(MUSIC)
Q : Zackie Achmat/Treatment Action Campaign (TAC)
Even if we are losing this court and even if we lose in court, we will succeed some day. There is no doubt in my mind. Because we have got the right on our side. There is not a single major civil society body who has defended the rights of the pharmaceutical companies to profiteer from people’s lives. And so for us in the end this case is just about a very simple thing : it is about life or greed, nothing else, life or greed.
(MUSIC)
34’45”
It is early morning. The Omugo hospital is awaking. Today is a decisive day for William: the start of his treatment, the first injection.
William ! How are you?
Wake up ! Wake up!
Q : Olema Erphas/Sleeping Sickness Coordinator
Today is the day we are going to start giving this boy Melarsoprol. And this is a drug which has a burning sensation. It’s a very toxic drug and as we administer the drug the boy will show some signs of pain.
35’26”
Melarsoprol contains arsenic. It can have serious side-effects and sometimes leads to death. What it boils down to is that the patient first has to survive the drug.
William. William !
William. Slowly.
Q : Olema Erphas/ Sleeping Sickness Coordinator
This drugs tends to destroy the veins each time we administer it, it has a destructing effect to the vessels. At the same time it also has some reacting effects to the patient. So this is the beginning of the treatment for the boy. We are not sure how the boy will present, but from now we have to really be observing him very closely after every two hours to see his ways of living, how he’s eating, so that we really catch up with how he is progressing with this treatment. This is just basically because of the toxic side-effect of the drug that we fear.
36’42”
The Melarsoprol injection is a painful experience and its side-effects can be life-threatening. What is more, the drug does not guarantee the patient’s recovery.
Q : Olema Erphas/ Sleeping Sickness Coordinator
The problem we see with most of these patients is : once we have treated them like this and they go home they still feel very sick and they lose interest to come back to us. Because they know we don’t have any option. Any other option to help them any better, apart from sending them home and dying there.
There is no choice for them. 30% of all stage 2 cases are resistant to the drug we are administering. So we are losing a lot of people despite administering this drug.
37’31”
On the first day of the trial the court session is adjourned.
On being asked to provide evidence on why their drug prices are so high, the pharmaceutical companies request more time to collect the information required.
Q : dr. Eric Goemaere/Doctors Without Borders (Médecins Sans Frontières)
I think there are a lot of people, I hope even a few thousands.
I do not manage to see…
But I think it is a success. If anything, this proves that the street is out here to defend its rights. A lot of people here are HIV positive and they have come here to defend their rights. And to demand a treatment. Facing the courthouse. Which is indeed symbolic. And they demand a treatment to be able to survive. They demand to survive. But they are stopped, because their rights are being placed second to profits. Look, this says it all (:’Lives Before Profits’). I think this summarizes everything.
(FADE TO BLACK)
38’27”
Six weeks later, just before the reopening of the trial, the pharmaceutical industry drops the case. In return the Government promises to consult the industry on the introduction in South Africa of affordable drugs and to respect the World Trade Organisation’s regulations.
End of the case, and a victory for the government, the aids-activists and the patients.
Q : dr. Giorgio Roscigno
In the same time it is only the first battle of a very long war and this war will now come into its most difficult part, because it is now the time for governments of African countries to take the responsibility of making sure that these drugs will really be available, and develop through an international collaboration. all those infrastructures that in Africa are needed to make sure that these drugs are distributed in a safe, effective way.
39’22”
Two days after his first injection William dies from the effects of his treatment.
(FADE TO BLACK)
TITLES - a film by Michel Peremans
- camera/sound : Frank Schulte
- editing : Bert Jacobs
- mixing : Jan Deca