Once 'illiterate' from her infections, a Khayelitsha township HIV+ patient climbs back

Khayelitsha's first HIV patient The very first patient who was treated in MSF's Khayelitsha project weighed just 44 kg, had 650,00 HIV/ml of blood and her CD4 count was 20/ml. She had enormous ulcers in her mouth, cried for her dead mother and just wanted to die. She should have weighed 65kgs, given her height, but the ulcers had prevented her from eating properly. After two weeks of treatment, the ulcers had halved in size and she had gained 10kg. After a month the ulcers were gone. A few months later she weighed 93 kg. When she returned to her previous workplace to see if she could be taken back, her employer did not recognise. She disclosed her HIV status to her entire neighbourhood, as everybody was questioning her about her weight gain. Since then, she has brought three new patients to the pogramme and is now a kind of activist in her vicinity. She now has an undetectable amount of HIV in her blood (below 125/ml) and her CD4 count is 390/ml. She is alive again.
South Africa - Boniswa (not her real name) is a 29 year old woman, with a nursing degree, who came to the Khayelitsha clinic in South Africa in the beginning of 2001. She was suffering from violent headaches, and was constantly squinting her eyes. She was diagnosed as having cryptococcal meningitis. She was also HIV positive. Her infections had affected her eyesight causing some permanent damage to the optical nerves but was also affecting her ability to interpret the letters she could see. In effect, her infections had left her illiterate. Her HIV was already so advanced as to leave her very susceptible to opportunistic infections. She had a CD-4 count that had fallen to an incredibly low level of just of nine. A healthy person can have a CD4 range between 500 and 2,000/ml. AIDS patients are considered highly susceptible to develop opportunistic infections when the level is below 200 and HIV people are often placed on anti-retroviral therapy when their CD4 count is below 200. The Khayelitsha project has had successes with people coming in with CD4 counts of one. "After I had treated her for the meningitis and we could talk a bit," said Francoise Louis, a doctor at the MSF clinic. "Boniswa told me 'I cannot read anymore. I can see the letters of posters on the wall, but I cannot understand the words." The HIV infection had affected the optical nerves, which had atrophied and has left her with some permanent damage. The optic damage meant she was visually impaired, but both the meningitis and the HIV likely also attacked her ability to interpret the characters she could see. Her infections had left her illiterate. When she signed the consent form for the ART programme, she made a simple 'X'. After one month of treatment, her condition was already beginning to improve and her ability to read and write started to return. She asked for a piece of paper and a pen, and wrote 'I have a seven year old daughter. Her name is Xola and she goes to school in Athlone.' Now after 12 months of treatment she now has undetectable viral loads. Her CD-4 count has climbed to about 350. She used to read a lot and now listens to recorded books. She eventually hopes to work with computers. There are special screens for people with bad eyesight. Treatment in Khayelitsha Patients in Khayelitsha are treatment-naive, meaning that they have never been exposed to the HAART in even any indirect way. Unlike patients under HAART in Europe, you will find their CD4 count rising even after 12 months; because in Europe the HIV patients’ have already been exposed to the drugs A low CD4 level means higher risk of side effects from the treatment. There may be a decrease of red (anaemia) or white blood cells causing certain infections to occur. When treating children, there are fewer side effects. When assessing someone for HAART treatment, MSF first treats whatever opportunistic infection they have, and then places them on treatment. There are now about 350 people on HAART and 5,000 more are being followed but are not yet in need of treatment. To receive treatment people
  • have to live in Khayelitsha
  • have been under evaluation for more than 3 months
  • have to have disclosed about their disease to one member of the house, who then becomes their treatment assistant
  • have to have had a home visit from clinic staff The current limitation to MSF care is more patients in need than there are places available in the programme. Care schedule Treatment for the patients changes with each month as MSF develops a culture of adherence amongst the patients. In the first month, they are required to come to the clinic for drugs and follow up every week. The second month, they come every second week. From that point on, they come every month. In addition to the HAART, patients get counselling on how to live with HIV/AIDS with every visit to the clinics. Two thirds of the people coming are women. Men and women have separate support group meetings in the general consultation system.