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Beat It! 1999 Episode 6

In the 6^th episode of the 1999 series the Beat It! team looked at the hope and promise of antiretroviral medication. Justice Edwin Cameron spoke openly about how these drugs saved his life and how his viral load became undetectable. In the second Human Rights section Fatima Hassan from the AIDS Law Project spoke about the legal requirement to provide anyone testing for HIV with pre and post test counselling.

Sipho Nhlapo: Sanibonani bakithi {isiZulu} [Greetings everyone], I am Sipho Nhlapo.

Mercy Makhalemele: Sanabonani bakithi {isiZulu}[Greetings everyone], I am Mercy Makhalemele and welcome back to Beat It! your guide to better living with HIV/AIDS.

Sipho Nhlapo: You know Mercy, people have been asking me why I decided to do this programme.

Mercy Makhalemele: Well Sipho, for me being open is the first step in dealing with the disease.

Sipho Nhlapo: Although it is not always easy but living in the closet makes it so much harder to get the information we need.

Mercy Makhalemele: Ngiyakwazi lokhu {isiZulu}[I know that] and that’s the purpose of Beat It! to start spreading the information which people can use in their daily life living with HIV.

Sipho Nhlapo: Well one of the most important pieces of information which we all need to be aware of is that there are medicines that fight the HIV in our bodies.

Mercy Makhalemele: And bakithi {isiZulu}[my people] the idea that HIV is untreatable is so wrong. The Beat It! team went out to speak to doctors and people taking anti-HIV medicines to find out more about these drugs, what difference they can make to our lives and why so few people are taking them.

Sipho Nhlapo: Let’s have a look.

Special Report Part 1: Antiretroviral drugs – They are here and they work.

Dr Neil Malan (HIV/AIDS Treater): Internationally it is accepted that when somebody’s got HIV/AIDS it’s a chronic manageable disease like diabetes and if you manage it well people can live till the ripe old age of a hundred, if that is in their genes they do not have to die as a result of HIV/AIDS.

Narrator: This is largely due to antiretrovirals; medicines which prevent the HI virus from growing in your body; however only a tiny amount of South Africans can afford these drugs which can cost up to R400 a month.

Judge Edwin Cameron (Person Living with HIV/AIDS): I’ve known for many years that I have HIV and I think that every person with a live threatening condition hopes that that condition will never materialise. Everyone hopes that the day will never arrive that you have to admit I am now sick. And I ignored all the signs. I fell ill eventually in October 1997 but for about 15 months before that my strength was going.

Fezeka Khuzwayo (Student on a Drug Trial): He said: “Oh you’ve got these lymph nodes; it might be anything from bacteria, it might be something from a virus or it might be HIV”. And I said: “Well I’m probably HIV negative I tested a while ago when I got raped and I tested three months as well and then I remember I was meant to go back three months later and I just didn’t go back.” And she said: “Well do you just want to do an HIV test just for completion anyway” and I said: “Yes”. And in the end they only did the HIV test because the other two were really expensive. And then they called me on the 23^rd of April; I found out, they told me that I was HIV positive.

Judge Edwin Cameron: In October 1997 I had to admit that both my lungs were completely full with PCP which is the Pneumocystis carinii pneumonia which affects people with AIDS. And I had oesophageal thrush, I had lost a lot of weight; I lost ten kilograms and my blood count showed that my immune system was failing. My blood count had gone below 200. So I had four of the classic symptoms of AIDS.

Fezeka Khuzwayo: It disrupted school a lot because at that stage, the stage when I found out, that I had the flu twice and I just had so much work pilled up and then finding out just drove me a little bit crazy and I ended up just deregistering from school and taking a holiday to think about it and I had trouble telling, how was I going to tell my mom about my HIV status. That was the worst of it, after I told my mom I felt so much better.

Molahlegi Nakedi (HIV positive person on a drug trial): I used to hear people say: “If you are HIV positive you are going to die, you know?” So in my mind I was having that situation you know. But after some few days I tell myself: “No, the only person who knows is God. There’s no one who can judge me when I’m gonna die.”

Judge Edwin Cameron: I went to my doctor and through him and through x-rays we confirmed that this was the position. And I then had to decide what to do. I had tried to avoid anti-viral treatment. I knew there were very severe side effects, I knew that they were difficult to take, they were complex to take and also I knew that there was a risk of treatment failure. The drugs don’t work for everyone. So I was very fearful. It was a difficult time. I was in denial. To have to face the fact that, not just that you have HIV, but that you have AIDS and that if the treatment doesn’t work you could be dead within two or three years is a very momentous thing in one’s life and its very difficult to face up to, but I had very good medical care; a doctor who was alert and very competent and we treated the symptoms first. And their again I felt very blessed and very privileged because I had the best treatment available. And then when I started getting better after three or four weeks we had to make a decision about anti-viral medication. Now here again I was very privileged because I am in the very tiny, tiny minority, the minuscule minority of South Africans who can actually afford these medications. I can’t afford them easily but at least my medical aid is paying half of them and I can afford to pay the other half. So I was able to start on anti-viral medication.

Narrator: Some positive people who are not able to afford medicine get into drug trials to access antiretrovirals.

Fezeka Khuzwayo: They did all sorts of tests and I had to go back to see if I qualify and I did. And then I started going on the trials I’ve been on them now for about four weeks and I’m…I don’t know yet really how I am doing accept that the side effects are killing me.

Narrator: But being on antiretrovirals is not always plain sailing.

Fezeka Khuzwayo: The side effects that have affected me are nausea; the nausea is really bad. It’s basically twenty four hours whenever I am awake, the nausea is there. It’s been also sleepiness. They make me very sleepy and they make me really tired. Sometimes I wake up in the morning after eight hours of sleep and I take a bath and I prepare for a day at varsity and by the time I finish my first lecture which is about three hours after I got up I’m tired and I want to sleep again.

Judge Edwin Cameron: The protease inhibitors; these eventually reduced the peri-oral neuralgia around my face, reduced after about two months and the nausea reduced after about seven months. But for the first year and a half that I was on the protease inhibitors my tummy was never right. My tummy was very severely reactive to these drugs and I had to be sure that for two or three hours after I had taken the drugs that I was close to a toilet.

Narrator: Because of the side effects many patients skip their medicines or stop taking it all together.

Dr Ezio Baraldi (HIV/AIDS Treater): The reason why we counsel patients extensively before we, before we put them on antiretroviral therapy is that they have to take the medication correctly, at the correct dosage and at the correct times. If they skip medication there will not be enough medication in the blood stream to suppress the virus, the virus will grow and become resistant to the medicines. That state of affair leads to the situation where you have no benefit for the patient because the virus is still growing but it is an expensive exercise because we are now using drugs that are not working. And of course there is always the possibility of spreading antiretroviral resistant virus. The next person who gets it now already can’t use the medication that the previous person was on.

Judge Edwin Cameron: For me the solution came in May this year when I changed to a new drug called Nevirapine. It’s a wonderful drug. It gives me no side effects, I don’t have to refrigerate it, it doesn’t make me nauseas, it doesn’t affect my tummy and since starting on it on the first of May my blood has been checked twice and there is no instrument on earth that can find the AIDS virus in my blood.

Dr Ezio Baraldi (HIV/AIDS Treater): We know the drugs work. What is important is how the patient takes them. If the patient takes their drugs correctly then we can expect a particular combination of drugs to work to suppress the virus for the period of anywhere between two and four years after that we have to change the combination to have the same effect again. How long can this continue for? Probably for as long as we have drugs but we are going to considerably, at the moment, extend the patient’s life expectancy?

Judge Edwin Cameron: The doctors know that the virus is still in my body, it is hiding away; it might be hiding in the membrane of my brain, it might be hiding in my male sex organs; my testis, it might be hiding in my glands; my lymph glands but they cant find it there but they know that if I stop this medication between, within two to three weeks the virus will be back. So I got to continue taking the medication for the rest of my life.

Molahegi Nakedi (Person Living with HIV): Because I believe I go to the trial because of belief you know, believe that those drugs going to help me.

Judge Edwin Cameron: I’m on three drugs at the moment, I’m on 3TC which is this little diamond tablet, I’m on d4T which is Zerit; brown tablet and then Nevirapine which is this tablet. And the combination of those three drugs which cost three thousand R600 is keeping me healthy and well and able to work and able to live, able to have friendships and a love life and to work fully in all the things I’m involved in. And it’s a great miracle that and is the miracle I would like to see formally extended to all South Africans who have got HIV.

Dr Ezio Baraldi: Drug cocktails at the moment are very successful in Europe and in America many of the hospitals which had short stay boards for HIV patients they have closed those boards because they are not there. Patients have picked up weight, have gone back to work, they have started a normal life style.

Zackie Achmat (Person Living with HIV): It’s true that in Europe and America the majority of people that are HIV/AIDS are now much better because of medication and drugs, that’s not the case in South Africa because the majority of people are poor. There are a small number of people who are on drug trials but they are the small number and most importantly what will happen to them after the drug trials.

Fezeka Khuzwayo: Ah, when the trial stops in a year; about forty eight weeks, I’m, all I’ll have left is to be able to afford R50 to buy drugs; moducare every month and that will be it because I mean my mother is unemployed and we are living with my father’s elder brother and he earns the pension. The three of us are living on the pension so there is no way I can afford to go on any drugs at all. I will just have to, you know, I guess, go along with positive living as they say. I will just have too live without the drugs.

Dr Ezio Baraldi: Stopping the drug all together will result in increase in the virus in the blood stream which is short lived normally because the immune system will start fighting it again, but the advantage of the patients is that he’s had two or three years of time during which the virus is suppressed and the immune system can recover. So when you stop drugs the immune system will be able to fight better because it’s now a bit stronger, it’s certainly not the ideal condition, the ideal condition is for the patient to continue on antiretroviral therapy.

Narrator: But Professor Vinodh Gathiram of the University of Natal has serious ethical problems with the drug companies who only supply medicine for the duration of the trial.

Professor Vinodh Gathiram (Head of Infectious Diseases University of Natal): To test an expensive medicine on a group of indigene people who have no other choices; it’s like using them like guinea pig and when the trail is finished well bad like, the patient can do what they like and that’s very much the situation; maligns to a laboratory animal in a experimental situation and I don’t want to see that happen.

Narrator: Even if the drug company that runs Fezeka’s trails will provide her with antiretrovirals for as long as she responds to their medicine, money will eventually stand between her and further treatment.

Fezeka Khuzwayo: I was, I was in exile for all my life, my father was a political activist and I travelled around Africa a lot and my dream is to work with an NGO or do some developing work. I mean depending on the need on that particular time when I finish studying I will like to go out there, in the most rural, rural areas somewhere in this continent and do some developing work and change people’s lives.

Narrator: With continuous access to antiretrovirals Fezeka’s dreams for the future will probably become a reality.

Dr Allison Russell (Chris Hani Baragwanath Hospital): Triple therapy can have a major impact on somebody I mean it causes what is called the lazarus syndrome which is the patients were literary at deaths door come back to life and have a whole new lease on life and if they continue to take that treatment they could have another ten years of life.

Narrator: The drug companies believe they can’t make the prices any lower and the government says it cannot afford to buy medicine for South Africa’s four million positive people at current prices. We can not leave it at that.

Judge Edwin Cameron: As drug companies’ executives, as governmental, as ministers, as judges and lawyers, as activist there are solutions, the scientists are finding solutions. Why can’t we?

Sipho Nhlapo: So, there we are folks HIV could be just another illness and not the deadly disease we are let to believe it is.

Mercy Makhalemele: People are dying needlessly because they can’t get access to these drugs.

Sipho Nhlapo: It’s only when people realise that there are medicines available, which greatly improves our chance of survival, that they will start demanding this medications.

Mercy Makhalemele: Next week the Beat it! team investigate why anti HIV medicines are so expensive, who is making money out of AIDS and what can be done to make treatment more affordable.

Sipho Nhlapo: Next up Faghmeda speaks to Doctor Steve about health problems which occurred in the early stages of the disease.

Mercy Makhalemele: Did you know it is illegal for your doctor to take your blood for HIV test without you’re informed consent this is the subject of this week’s human rights report.

Treatment Literacy

Faghmeda Miller: Doctor in last week’s programme we have discussed the different types of infectious that you can get when you are HIV positive, but what I would like to know is that at this stage when you are diagnosed that you are HIV positive you get different types of problems like skin rashes, sinusitis and other problem like that, what this actually does, does that mean that I have AIDS can you perhaps explain to me?

Dr Steve Andrews: Faghmeda as we discussed last week HIV is a disease that causes destruction of the immune system, one thing that’s not well understood is that HIV does not just ’cause it to work less well and in some sense it can cause part of it to work abnormally well. This means that parts of your own body can attack you, this can be present in various ways, people can feel very tired, they can get skin rashes, they can get enlarge nodes, this occurs on the early stages of HIV illness and are related in a large way, not only in the virus itself but to your own body response to the virus.

Faghmeda Miller: Tell me doctor in this whole episode of being HIV positive and all that, when can one find you will get more serious illnesses?

Dr Steve Andrews: People who are HIV infected can get diseases, any diseases that anybody else can get the difference is that the immune system is not working so well. The way we measure this is the CD4 count. These are the soldier cells that fight off diseases in our body and if there are not very many of them, then our defences are also not working that well. Some who is not HIV positive will have a CD4 count between 600 and 1500 cells. Someone who is HIV infected will have a CD4 count that will be lower than that, that will drop on a yearly basis because the HIV continues to push it down. When the CD4 count drops to below 200 cells the person is very prone to getting the illness that we associate within late stage diseases and AIDS.

Faghmeda Miller: Another thing that some people have are these swollen glands, what does that mean?

Dr Steve Andrews: The symptom is called the persistent generalised lymphadenophy or big glands in more that one place in the body and what it’s associated with is the immune system overreacting in an attempt to keep HIV under control. This can last for months or years, this can be very troubling to people but it is important to realise that it is the response of your own immune system to the HIV infection.

Human Rights - HIV testing without consent

Ronnie (pseudonym) (Tested for HIV without informed consent): HIV positive people are not living with dignity. They are discriminated against. Once my identity is revealed I will be discriminated against. I will lose the sense of belonging in the community and I don’t want that.

How did you know you were tested?

Ronnie: The doctor had to claim the money from the medical aid so she had to send the medical aid the details for the money, you know. Then the medical aid members sent us the statement; that how we learnt.

What did the doctor fail to do?

Ronnie: When she took my blood she never mentioned that is was for HIV testing, you know. She never, she never specifically mentioned that to me and I learned later that one has to go through counselling. There is a procedure right you know for such things.

Ronnie: After the test she wouldn’t tell me that she tested me for HIV test and these are the results, she never.

What are the rules for HIV testing?

Fatima Hassan (Attorney, AIDS Law Project): Well the medical profession themselves have published guidelines since 1994 on the manner in which testing can take place. Those guidelines provide that HIV testing can only take place with properly informed consent, which means proper pre and post test counselling. So there are various steps that you would need to take in order to get the appropriate permission from your patient.

What is informed consent?

Fatima Hassan: In 1994 one of the cases that went to our High Court, which was C v Minister of Correctional Services, explicitly stated that informed consent means providing pre and post test counselling and that is an essential component of informed consent. So in addition to it being an ethical duty to provide counselling it’s also a legal duty.

Ronnie: It was like a blow to me to know such. I began to have second thoughts about life. It wasn’t really easy.

Why is informed consent so important?

Fatima Hassan: There’s various sort of dynamics with HIV and AIDS that makes dealing with an HIV positive result more difficult. We live in a legal environment that isn’t very supportive. Only recently do we have specific protections for people in employment. You still can’t get life insurance, it’s difficult to get a bond, it’s difficult to get housing. You may be ostracised at work, you may be ostracised at school. So in that sense HIV and AIDS is very different from other infections and other diseases and until such time that our environment and people in our community respond to HIV and AIDS in the same way that they do to cancer, for example, or to heart disease, or to epilepsy or asthma, until then HIV and AIDS will always require that people get specific counselling.

What action can one take?

Fatima Hassan: You basically have two recourse mechanisms you can use. The one being the Health Professions Council where you lodge a complaint and the second being a civil court of law where you sue for damages.

What will a disciplinary hearing do?

Ronnie: I thought a lesson must be taught here; that no other person must be tested without consent. Who ever the person may be, young or old, green or black, yellow or whoever, every person must be informed and every person must give permission for that test. They must say: “Yes doctor, I permit you to do this test for the best of my health”. For the other doctors as well who are still thinking, who haven’t done this but are thinking to do it, they must think twice before they do that, because it is illegal, it is not acceptable to the individual, to the family of the individual and to the society at large.

What about the claim for damages:

Ronnie: We will be settling out of court (the amount of the settlement was R 20 000, 00), but the disciplinary hearing will go on. I wanted both cases to go on, but my health is very weak and I might not live up until the end.

Finally what do you want?

Ronnie: I still want to be respected and to die with respect, with the dignity.

Sipho Nhlapo: I think our friend there has done a very brave thing in taking that doctor to court.

Mercy Makhalemele: Bakithi nizizwele nani okwamanje basibize uMarc {isiZulu} [People you’ve heard for yourselves, now lets call Marc] to present this week’s Red Noose and Positive Person Award.

Red Noose and Positive Person Awards

Marc Lottering: Now I must admit that I looove surprises but not like learning that you are HIV positive, so can you imagine how surprise I was that there are still so many companies out there who are routinely testing their workers for HIV and what’s worse is that there are doctors who are cooperating with this, taking blood and sending it for HIV testing without first obtaining the informed consent of their patient, eina [ouch]. So this week’s Red Noose goes to all you doctors, who in exchange for a bit of silver across your sweaty palms are happily selling your patients rights down the river by not providing adequate pre and post test counselling, for you I’m prescribing a little bit of neck surgery. Moving on to the Positive Person Award just to show that there is absolutely no bias when it comes on giving someone a pat on the back, this week we will like to give a Positive Person Award to those drug companies who have undertaken to continue to supply medication to people on antiretroviral drug trails as long as the medication is effective for the person who is on the trial. Well done to all of you. And wait a minute the Red Noose is doing an investigation, the Noose will like to know when SAA, Old Mutual, Liberty Life and Commercial Union will respond to the AIDS Law Project’s call to state clearly that they are not requiring any of their employees or customers, without first providing counselling and obtaining informed consent and that they are indeed getting permission form the labour court as the law requires for any job from which they want to exclude positive people. Ja nee, ons hou julle dop ne [Yep, we’re watching you], otherwise we hang you. {Afrikaans}

Mercy Makhalemele: That wraps our programme for this week.

Sipho Nhlapo: But we’ll be back next week bringing you more information on HIV/AIDS until then from Mercy and me remember guys together we can Beat It!

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