DEATH BY PRESCRIPTION?

By Vivienne Vermaak

Carte Blanche 22 Oct. '00

To most people of Atteridgeville township outside Pretoria, Kalafong hospital is the only access to medical care. But what should be a place of safety hides a disturbing story of alleged exploitation and death by prescription in the massive AIDS industry.

At Kalafong hospital, like many hospitals around the country, AIDS drugs are tested on humans. Mistakes can cost lives. Earlier this year, Kalafong Hospital made news headlines when the department of health called a halt to a clinical trial of AIDS drugs at the hospital after reports that 6 people had died. Are our HIV positive township populations being exploited as guinea pigs to test dangerous AIDS drugs? If so, at what price?

Gladys Mamosadi is a 31 year old social worker from Atteridgeville. In 1999, she was HIV positive - but healthy, making her a perfect candidate for the drug trials. She took the drugs, believing it would keep her healthy, for her two young children, for longer.

It's been 10 months now since Gladys' started taking the pills and her life has changed completely. She used to be the family breadwinner, but hasn't been able to work for 7 months. She can't walk, see or hear properly. Her mother, Rebecca is convinced this is the result of the AIDS drugs she took.

Rebecca: I wonder why after she started taking the pills she became like this.

Reporter: What happened to her?

Rebecca: "After she started taking the pills she changed. She went blind, couldn't hear properly and couldn't speak properly."

Rebecca also witnessed other symptoms, including anal bleeding, sores that won't heal, abdominal pains, weight loss, fevers and pneumonia, all of which she tried to take care of at home the past few months. These could all be typical AIDS symptoms, but Rebecca remains convinced it was the pills - not the virus.

Rebecca: "Those pills kill Gladys, destroyed Gladys's life"

When approached for comment, Gladys doctor at Kalafong, Dr Mariette Botes, denied that Gladys was even on the trial. Yet we found two bottles of well known AIDS drugs amongst Gladys' medicine. Both bottles have her name clearly marked on them. The listed side effects of the drugs could very well explain Gladys' symptoms and include: blindness, hearing loss, - and even death.

If she was not on drug trials, who gave her the pills?

Reporter: Who gave you the pills?

Gladys: Dr Botes.

Reporter: Did she tell you what these pills could do to you?

Gladys: No.

Reporter: She didn't warn you about the side effects?

Gladys: No.

Reporter: Are you sure?

Gladys: Sure.

Ordained Anglican priest, Father Johan Viljoen used to work with Gladys. He noticed a sudden spate of deaths and illnesses amongst other colleagues on the drug trials and became concerned about Gladys. He recalls her good health while they worked together at the AIDS Care Centre at Kalafong hospital.

Reporter: Did you know Gladys?

Father Johan: Yes, I knew her very well When I started to work there she was a lively, healthy young woman. She was HIV positive, but she was energetic and certainly if one looked at her you'd say there there was nothing wrong with her.

Reporter: In your opinion, what caused the rapid deterioration in Gladys' health?

Father Johan: I think the fact that she was on the trials caused the rapid deterioration.

Concerned, Father Viljoen started a one man investigation into the drug trials in the township.

Most people were too afraid to make statements, but those who did had disturbing stories to tell. They told him they did not understand the complicated consent forms they had to sign. Many said their health deteriorated suddenly after taking the drugs.

Patient: After one day, the rash developed into sores all over my body.

Others said their complaints were dismissed.

Nelly: "Hulle het gese ons kan nie nou kla nie, die pille is duur"  (They said I was not allowed to complain about the pills, as the pills are too expensive.)

Father Viljoen's efforts were responsible for exposing the human rights issues in AIDS drug trials, as well as the lack of governmental control.

Father Johan: And from the government's side, there is no control. People register their protocol with the Medicines Control Council and then they can go ahead unmonitored.

The Medicines Control Council acknowledges that currently, no independent monitoring takes place. Until it's done, ordinary people like Gladys and Nelly are left to fend for themselves.

Like Gladys, Nelly Moema was healthy before being recruited by Dr Botes take part in the trial. On Tuesdays, she collected a white box with 4 different kinds of AIDS drugs inside. In return, she was given R50. Within weeks she experienced violent mood swings, and fatigue.

Nelly: Ek was gesond. Dit was net na ek met die trial begin het toe voel ek iets is nie reg nie. Ek siek gevoel, moeg, moedeloos, Ek het maklik gehuil, baklei vir niks.  ("I was completely healthy. I had no problems. It was only after I started taking the drug trials that I felt something was wrong. I felt very ill. Sleepy, depressed. I cried easily and fought for no reason.")

She complained to the doctor, but pressure was put on her to continue with the drug trial.

Nelly: "Die dokter het gese ek kan nie nou die pille los nie, want die HIV gaan sterker terugkom en dan kan ek ook doodgaan." ("I recall the doctor saying that if we stopped taking the pills, the HIV would come back stronger and we could die.")

Nelly went to hospital to lay a formal complaint, because the pills made her too ill to work. She needed her medical files as evidence to back up her claims. Normally, she had no problem in getting her file, but this time was sent back empty handed.

Nelly: Die file hulle se is weg!  ("They say the file is missing!")

The file registry told Nelly that her file was removed from the registry on the 5th of April. By Dr Botes.

Nelly: Iets is nie reg nie. Iets gaan aan hierso!  ("Something is not right here. Something is going on!")

Our constitution grants patients a legal and undeniable right to their own medical information. Why was Nelly refused her own file?

Gladys had similar problems. By June this year, Gladys' health had deteriorated to such an extent that she was re-admitted to hospital. We were not initially allowed access to Gladys files, but Gladys was frantic that we believe her. She insisted she was on a trial and that her files would back her up. Gladys couldn't see properly, so we had a look - and there it was - evidence linking Gladys to the trial - in her hospital file "Patient on HIV treatment trial with Dr Botes" As well as an admission that the pills might have caused the side effects. It was in black and white in her hospital file.

The family confronted Dr Botes to get copies of the files.

Rebecca: Dr Botes, I want those files. Volume 1. 2 and the clinic file. She said, "What do you want with those files?" I said: Dr Botes,I want to see where are those trials.

They were told Gladys' files were not available to them.

Reporter:So where are the files now?

Rebecca: I don't know, Dr Botes must know where the files are.

In an internal hospital report, Dr Botes admits that she took the hospital file. Why would a doctor withold such important information from a patient? Carte Blanche formally requested copies of all Gladys medical information, but the copies we received had glaring omissions.

There was clear mention of a drug trial in the file we saw earlier. The copies made no mention of this. Nor were the pills we found amongst Gladys' medicine entered as being administered or prescribed anywhere. Why not? Dr Mariette Botes was the only one who could solve the mystery.

She was in charge of the AIDS drug trials at Kalafong Hospital. Dr Botes at first was only prepared to speak off camera.

Dr Botes: I'll chat to you off camera.

Reporter: Unfortunately we're a television programme. We have to talk to you on camera.

Dr Botes then agreed to an interview.

Reporter: So you say the eleventh would be all right? At what time?

Botes: Let's make it at 11H00.

But when we arrived, Dr Botes was not there.

Secretary: She is really not here.

In a fax, Dr Botes explained that a secrecy clause with the drug company was the reason for the cancelled interview. It seemed our investigation had reached a dead end in Dr Botes office, but approximately 100m from Dr Botes' office, we traced the origins of Gladys involvement in the drug trials.

Neslted in a leafy corner of the Kalafong Hospital grounds is the Mohau children's care centre. Nelly, Gladys and Father Viljoen used to work here.

Both Nelly and Gladys were recruited into the trials while working at the Mohau centre. The centre is run by Father Barry Hughes-Gibbs, and this is where the story takes an unexpected and interesting twist.

A submission Father Barry presented to the international AIDS conference earlier this year says his centre participates in clinical drug trials, yet Father Barry denies this outright.

Father Barry: The drug companies and the drug trials have absolutely nothing to do with us.

Reporter: So. what is your interface with Dr Botes when it comes to these trials?

Father Barry: The interface is she is doing a trial, okay? And she may or may not, according to the type of trial or the length of trial say, can you provide meals? We're just logistical support, that's all.

Father Barry gets paid to provide this support. At a press conference which he and Dr Botes attended, Father Barry said Dr Botes handed him drug trial money for his services.

Press Conference: When money has been made available in the trial for that specific purpose, Dr Botes passes the money to us to purchase the meals.

Father Barry later denied that he received any money.

Reporter: Have you received any money because of the drug trials.

Father Barry: No, emphatically no

Reporter: Nothing?

Father Barry: Nothing, I assure you..

What support did Gladys get from the AIDS care centre? She was financially destitute and felt betrayed. She desperately needed moral and financial support.

Reporter: Did father Barry help you, Gladys?

Gladys: I want to go to army and get AK47 for that old man.

Reporter: Why?

Gladys: He destroyed my life. He even intimidate me.

Gladys then made a startling allegation. She says Father Barry came to her hospital room with a special request about the drug trials.

Gladys: He came in and said: "Gladys, I want you to write a letter about Father Johan."

Gladys says Father Barry threatened to withhold her salary if she did not write a statement saying Father Johan was lying about the drug trials and that he, Father Barry was innocent. Gladys refused, writing a statement backing Johan instead.

Reporter: Gladys recalls an incident where you went to ward 20 to ask her to write a letter. She says you tried to intimidate her into writing a letter absolving yourself and blaming Johan for everything?

Father Barry: I stand before God and deny that totally and utterly.

We might never know what happened in Ward 20 that day, but how would Gladys profit from lying? In fact, it seems the only profit gained from Gladys' experience and the current system lies with the medical profession and the drug industry.

It is difficult to establish how much money is paid to doctors or hospitals participating in these trials, but the stock in this drug alone is worth hundreds of millions. The industry as a whole is worth hundreds of billions. And the patient, at R50 a time is at the bottom of the ladder.

To Nelly, the R50 was not worth the risk. She stopped taking the AIDS drugs.

Nelly: Ek sien dit nou. Hulle grou vir ons 'n graf. Want jy kan hoe kla, hoe voel hy, hulle worry nie nie.  ("I can see it now. They are digging our graves. No matter how much one complains, they don't care.")

Nelly opted to dig her own vegetable garden instead of going the drug route. Her former good health and positive attitude has returned.

Nelly: "Ek kan nou die verskil sien vandat ek die pille gelos het. Ek voel baie beter. Ek voel piekfyn. Geen probleme nie. En buitendien, sy kan nie baklei oor ek die pille gelos het nie. Dit is my liggaam. Ek drink die pille, nie sy nie."  ("I can see the difference now that I've stopped taking the pills. I feel a lot better. I fell just fine, happy. Anyway, she can't complain because I stopped taking the pills. It is my body. She does not pay for the pills. She does not take the pills, I do.")

Gladys Mamosadi passed away shortly after our interview. Her family is convinced the hospital is covering up the real reason for her death. We may never know what killed her. We don't even know how many Gladys' there are out there. Thousands of these trials are run in South Africa. Until there is more transparency and control, Gladys' voice cannot be heard.

Post script by Vivienne: Please note that Gladys was the seventh out of 8 people in her local AIDS support group to die whilst on AIDS trials in the past year at Kalafong hospital.