WHERE ARE THE PATIENTS?

August 2000

Below an e-mail to Mr. Leon Louw of the Freemarket Foudation. A medical researcher at South Africa's JHB General (Wits Medical School) asked if her daughter could interview Mr. Louw for a school AIDS project. Why him? Well, she couldn't get anyone in the establishment to grant an interview. During her research she happened to find real hard evidence of a pandemic of frightening proportions ...

Dear Mr Louw

Melanie is doing a project for school on AIDS. She and a classmate have to look at facilities and the cost of running these in the JHB area. They were doing a video on this, and you can't believe just how difficult its been to get someone willing to be video taped by grade 9 students - for a class project.

I called the Hospice in Houghton and spoke to a woman by the name of Divina Bishop. She told me that a very small number of their patients were AIDS patients, most are cancer patients, understandably so. I still asked if anyone there would be willing to be interviewed by Melanie and her classmate, she told me that there was no one available. Everyone was out doing visits. She couldn't even make an appointment for any other day. She instead referred me to Emseni in Hillbrow, they deal mostly with AIDS patients.

I then called Emseni and spoke to a Agnus Thiti. She was willing to grant an interview but said that we first needed permission from the person in charge, a Joseph. I called him and he referred me to a woman by the name of Tilly Otto. She said that everyone is busy on workshops this week but she will try to arrange something for next week. When I told her that Agnus had agreed to do an interview, she said she can't understand why Agnus had agreed. I left it at that. I still haven't heard from Emseni.

At the JHB General, things were even more hectic. Firstly, they agreed to do the interview, but when the kids got there, they refused. They said they can only give them pamphlets on AIDS, anything more than this, permission had to be obtained from the hospital PRO. I went to the PRO's office and was told that she is on leave till end of this month. There is no one else replacing her and I have to wait until she gets back. I called the Superintendent in the hope that she could help me, but she is also away. Her secretary is also away. I went to the CEO's office and he is away on a workshop. I left a message with his secretary. Am still awaiting his reply.

The really strange thing about the AIDS counselling centre and clinic at the Gen was that there was not a single patient there at 2.00pm on Monday 21st August. There were three ward clerks and about 6-7 nurses. The one ward clerk was on the phone the whole time that we were there, talking to someone about her divorce. The other was watching her and the third was busy with the computer. The nurses were sitting in a room putting labels on urine bottles. They were relaxed, chatting while putting labels on.

When we arrived there I was convinced that we had come to the wrong place. I thought that the AIDS centre would have many half-dying people desperately seeking medical help, after all, we are supposed to be in the middle of an epidemic. I am certain that that clinic had to be the quietest clinic in the whole hospital on Monday. But, I was told that I was at the right place and could find the nurses in the room. I kept looking around for at least one patient. I was there for about 30 minutes and in all that time, I didn't see a single patients even walking by. I kept wondering when do they see patients. They couldn't see us the Friday because I was told that there is no one at the clinic after midday, everyone takes their half day then. Melanie and her classmate could do this only after school, so Friday was out of the question.

I went back to the clinic on today, Tuesday, and found the clinic to have about 200 patients, and thought okay, so here are the AIDS patients, only to find that most were there to see the Dermatologist. I then spoke to Sister Susan and Sister Caroline, two nursing staff. I wanted to know exactly how many of the people present were there for AIDS counselling or had come to the clinic for AIDS related diseases/issues. I was told that there were 61 HIV/AIDS patient. The clinic opens at 7.00am and closes at 12.00pm. During this period they hoped to see all of the 61 patients. Sister Caroline even showed me the book of the patients they had already seen and those still to be seen, the last patient in the book was number 61. Then she told me that they only saw AIDS patients on Tuesday, no other day of the week.

This explains why there were no patients there on Monday. Well, I suppose the nursing staff needs time to get the urine bottles labelled, and the clerical staff need time to get up to date with their personal calls! While I was talking with Sister Caroline, another sister came along and wasn't too pleased that she was talking to me, especially since I had come back to the clinic with no written permission from the PRO, who is on leave. The discussion came to an abrupt end.

What I found is that these AIDS people seem very reluctant to talk to anyone, even a grade nine pupil. Its like they are guarding some secret. No one is willing to talk to Melanie or me. I don't know what threat a 15 year old presents. You are sent from one department to the next, tangled in bureaucratic red tape. I would have thought that they would welcome a pupil who wants to do a project of this kind, especially since she is to present this to her school. But there was no such enthusiasm. Instead they treated us with suspicion and even when I told them that this is not for the SABC or the Sowetan, just a school project, they still wouldn't give in. I even showed them the questions that Melanie wanted to ask and this didn't help. They were really quite simple questions: eg how many patients they see; the cost to the patient and the state; availability of facilities to AIDS patients; counselling; etc.

We still have not been able to get a video-taped interview, still trying. We have even tried getting through to Dr Sanne who is doing the clinical trials at Wits and the Gen. No one answers the phone at his rooms and he couldn't see me this morning at the clinic, too busy. Aluta Continua!

If they see about 61 patients a week in a hospital as big as the Gen, you can work out the rest. They couldn't tell me of the 61 patients how many of them had full blown AIDS and how many were just HIV positive. At Emseni, I just found out that they only have one ward with HIV/AIDS patients. When I asked them how many patients there were in that ward, they said this wouldn't help me because, according to the manager there, Joseph, there is a mixture of all kinds of patients in that ward. I then asked him if I could speak to someone in the ward to ascertain the exact number of patients admitted there for HIV/AIDS, Joseph kindly told me that this wouldn't be possible because the people in the ward are not allowed to speak to me without his consent. I asked him for his consent and he said that this would take time for him to give. I told him that I didn't want to know patient names or any sensitive information like that, just the number of patients in the ward who were admitted for HIV/AIDS related diseases. He promised to get back to me. He did tell me that there were 28 patients in total in the ward, but couldn't say how many of these were there for HIV/AIDS. I give up. Information on AIDS seems to be the most heavily guarded secret, perhaps even more than secrets at the NIS.

Consider that Hillbrow is said to have one of the highest concentration of HIV/AIDS people in the province. I spoke to Fikile at Community AIDS Information and Support Center in Hillbrow and she couldn't even give me a figure or an estimate on the number of people with HIV/AIDS in the Hillbrow area. The only thing that she could tell me is that its very, very high. She did tell me that that centre only deals with counselling. I wanted to know where the people go to for treatment and she said at the Gen or to Emseni. At the Gen. No one could help me. There is no ward dealing specifically with HIV/AIDS patients and no one seemed to know where I could find these patients or who I could speak to if I wanted to know how many patients have HIV/AIDS - of course, they seem to insist that you say HIV/AIDS.

I have spoken to someone in our ward, cardiothoracic surgery. In the about 700 or so patients that we see per year, about 20 are HIV positive. We don't see patients with full blown AIDS as this is considered to be a dangerous and unoperable condition. I was told by the social work department that in the medical ward, they have about 30 patients who are HIV positive of the over 60 patients there.

Apparently this is the highest concentration of HIV/AIDS patients in the Gen - in the medical ward. They told me that at any given time this is probably the number of patients (30) you will find who are HIV positive in that ward. I don't seem able to get information on how many patients have full blown AIDS. Two weeks ago I read in the Star that about 200 teachers die each month from AIDS. I can't even find one in any of the hospitals that I have called. Okay, that's perhaps unfair because I have been told that 'a lot' of people die from AIDS, but no one can give me an exact number or even an estimate.

Anyway, I called the medical ward, ward 587, and spoke to the sister in charge there. Today, 22nd August, at 15.25, there are no patients who are HIV positive or have full blown AIDS in that ward. I told them that the social work department told me that there should be about 30 HIV/AIDS patients in that ward at any given time and they said yes, they sometimes do have about 50% of their patients being HIV positive, but not today or yesterday. I'll try tomorrow!!

In the meantime, I still have not found anyone willing to give a 15 year old an interview for her school project. Maybe I should post an SOS message on the Internet!

sincerely
Melanie's Mom