Dit is het verhaal van Sheila Ngomane. Sheila ging met Hugo en Liesje mee naar de bijeenkomst van de World Health Summit in New York. Daar vertelde zij zonder blikken of blozen voor een zaal van honderden mensen, waaronder Bill Clinton, Bill Gates en Sir Richard Branson haar verhaal.  

It is an honour to stand in front of you, something that was not possible 5 years ago. In those days I could hardly stand.

My name is Sheila Ngomane, 42 years old and I'm born in a township called Elandsdoorn in South Africa . Elandsdoorn is a township approximately 150km north of Pretoria . It is a very rural and underprivileged community where I grew up. When I finished my high school there was little chance for a girl like me to find employment in our area. I had to go and find work in the big cities a route which is not always easy to take. I have had quite a few relationships, not always out of love but often also to survive. I'm a single parent and I've got a daughter and a son of whom I'm very proud. It is them I dedicate my life.  

I was 37 years old when I found out that I was HIV positive. In those days this was a death sentence and it made me very depressed because I was very scared who would take care of my daughter. Slowly I felt that power was leaving my body.

I was working for a white family as a made in the household and often I felt in the morning that I did not have the energy to reach the end of the day. I couldn't and did not want to give up my job because it was paying for the school of my child. I started losing weight and felt that I was becoming very ill. The Mrs sent me home but fortunately continued paying for the school of my child.  

In Elandsdoorn there is a clinic which is called Ndlovu Medical Centre. Everybody was speaking about it because that clinic gives hope. It was the first clinic in our province that started treating patients with anti-retro virals. When I went there they found that I had a strange thrush in my mouth and tuberculosis in my lungs. They measured how advanced my HIV was and we were all very shocked when we found out that my CD4 count was 37 and my viral load  more than half a million copies of HIV per ml blood. At that stage I weighed 38 kilograms and when I looked in the mirror I saw a skeleton. I was skin over bones.  

My thrush and the TB were treated adequately and I felt that I was improving. At that stage antiretroviral drugs were out of reach for us because the cost of the medication was twice as much as my income. Dr. Tempelman suggested that I should go back to my work and speak with the Mrs. I was very fortunate that both my employers wanted to pay for my treatment and till the end of days I am very grateful to them.

The antiretroviral drugs changed my life. I slowly started gaining weight, I felt the power return and went back to work again. The family I worked for was very surprised to see me back because they thought I should never return. Monthly I returned to Ndlovu Medical Centre to collect my treatment and to be checked. When I was at the clinic I saw more and more people coming who looked like me before I started the antiretroviral treatment and I thought “How can I reach them to help them to get a life back with HIV?” I applied for a job to become one of the Hiv/AIDS counsellors because who can counsel better than a person like me who knows where she comes from?

Ndlovu Medical Centre started at that stage a large scale rollout program to make ARV's available to AIDS patients for free. It was the first clinic in our province that secured donor funding to supply the treatment free of charge to the people.  

In South Africa 1 out of 5 people is HIV positive, daily 1000 people die of the complications of AIDS, and 2000 people become infected with the virus. Working at Ndlovu Medical Centre has taught me that HIV is a chronic manageable disease and from the medical point of view HIV is no longer any different than diabetes, hypertension or rheumatoid arthritis. It is only a matter of telling people that they can gain so much by knowing their HIV status and start treatment before they turn ill. There is no longer any reason to die because of the old stigma. The paradigm HIV=AIDS=death is not true any more.

A good quality of life with HIV is within reach for all of us who are infected with the virus. It is just that good programs must be made available at a large scale. Programs with antiretroviral treatment that are well monitored and that give good education, are scarce.  

It is therefore that I stand here in front of you and pledge to you to assist all those millions of people who are currently dying without necessity. Antiretroviral treatment programs show that it can be done.

Today I weigh 58 kg.; the virus is already more than 3 years undetectable in my blood and my CD4 count has returned to normal values.  

Thank you  
 
 

Er kwamen dagelijks tientallen Sheila's om raad vragen bij de kliniek. Vel over been, uitgeput en ten einde raad. Veel mensen konden de beschikbare medicijnen niet betalen, zoals Sheila ons duidelijk maakt, en waren gedoemd te sterven. Sinds kort heeft Ndlovu de middelen gevonden om te starten met het HAART-project waardoor 2500 mensen zoals Sheila gratis aids-remmers en bijbehorende behandeling kunnen krijgen.

HIV-positieve patiënten worden behandeld met Anti Retrovirale (ARV) medicijnen, aids-remmers. ARV's kunnen HIV/AIDS niet genezen, maar maken het mogelijk om met de ziekte goed te kunnen leven.  

Het HAART-project dient als een model om behandeling met aids-remmers toegankelijk te maken voor mensen in afgelegen plattelandsgebieden en is gebaseerd op het concept van een Autonomous Treatment Centre (ATC), een onafhankelijk behandelcentrum. Professor Joep Lange, een AIDS-specialist verbonden aan de Medische Faculteit Amsterdam, heeft het principe van een ATC ontwikkeld. Het Ndlovu Medical Centre heeft dit concept omarmd en aangepast aan lokale omstandigheden om snel een goed georganiseerde HIV/AIDS-behandeling in Zuid-Afrika in te voeren. Op dit moment functioneert Ndlovu Medical Centre al als een ATC. Het is een gewone kliniek, zoals die van Ndlovu, met diensten zoals een apotheek, een röntgenapparaat en de mogelijkheid tot het maken van een echo. Daarbij zijn er 15 bedden beschikbaar voor gewone opnames en AIDS-patiënten. Dat wat Ndlovu uniek, en een ATC compleet maakt, is de aanwezigheid van een lokaal HIV- laboratorium. Dat houdt de lijnen kort en maakt het mogelijk de patiënten snel te helpen en efficiënt te blijven volgen.

Op dit moment, maart 2006, staan er zo'n 700 patiënten op ARV's in het Ndlovu ATC. De bedoeling is om in 2007 2500 HIV-patiënten op behandeling te hebben. Een ongelooflijke uitdaging die we samen met een uniek team van lokale mensen op ons hebben genomen.  

Het HAART-project van Ndlovu, gebaseerd op het ATC-concept, is in onze ogen een goed werkend AIDS-bestrijdingsprogramma dat als model kan dienen voor andere plattelandsgebieden in Zuid-Afrika. De kracht van de Ndlovu-aanpak is zonder twijfel het counselors-systeem zoals dat ook bij het TB-project werkt. Counselors (voorheen werkeloze jongeren uit de omgeving) gaan op brommers bij de patiënten thuis langs om ervoor te zorgen dat de mensen hun aids-remmers blijven slikken. Dit systeem is uitermate effectief: meer dan 90 procent van de patiënten slikt nu trouw de pillen, veel meer dan bij welk staatsziekenhuis of ander project ook.