I’ve been busy! Wanting to spend all my time on HIVEX but not able to do so. Needing to earn money. Trying to get us backing, for trials, more machines, encouraging people to come and see what we have been doing.
It is almost a year since we began treating people in Commercial city in Durban. Still, we have no funding. Clive has given over his life to treating people and letting people know that we exist. In that year, we have treated 850 people. Many were very ill. People in wheelchairs, mouths and throats and stomachs full of ulcers, unable to eat . Most not taking ARVs, for all sorts of reasons. Too ashamed to go to the clinic, put off by side effects. ARVs are life savers, but so many don’t or won’t take them. And many stop taking them after HIVEX treatment. Whatever we say. The best we can do is to tell people to be very careful, keep on testing, and monitor them as best we can, without having the ability to do tests ourselves, and as yet, with no lab willing to do the sophisticated tests we would like. We are too small to be interesting. All the time, there are amazing stories, and we will tell you some of these, over time. A little while ago, we followed up on 650 treated people. Almost all seemed to be very well, but some people respond well initially, and then slip back. So far, we think it about 25 people, and those whom we have been able to test all have multiple HIV strains. Maybe this is the key. Some strain that the equipment is not affecting. Oh, for money and trials…
We are surviving on donations, mostly from patients, and on the work of volunteers. Clive works all the time, and I work whenever I can, given that I have to make sure that I have enough to look after my children. I rather resent the time I have to spend doing paid work. I want to work on this until we are established. Long long days. A privilege, but hard.
What has changed now, and the reason for entries, posted at last, is Nell, and freeing up my time. Nell has come to help, thanks to her grandparents and parents, who are funding this. Wow! We have decided that we will use time to let others know what we are doing, and since I am in London, and our equipment in Durban,that we would talk to Leaflet, who has been helping Clive.
Leaflet told us her own story. She was ill. Very ill. She had been HIV+ for 12 years, and she had got thin and was having night sweats so that she had to change her bedding each night. She began to vomit up blood, and couldn’t breathe. Eventually, she knew she had to take ARVs, and on January 18th she went to the clinic.,and was prescribed ARVs which she had to pick up on 28th. On 22nd, a Saturday, she knew she was dying. She couldn’t even drink water, and knew that she had to get to a doctor, but she had no money. She wouldn’t get paid until the end of the month.1 She struggled to a doctor, even though she had no money to pay, thought they would see her, The doctor suggested that she visit HIVEX. She did, and Clive suggested that she be treated straight away. 4 days until her ARVs were ready. What should she do? Suspicious, angry, aware that she wouldn’t know what had worked if she took ARVs, She couldn’t eat. Had an inflamed mouth, and her leg was swollen. When she went to pick up her medicine, some of those who had been walking on 20th were in wheelchairs, and some, not there at all.2 She cried, she prayed; “What to do? If it part of your plan..” She decided that she should take the HIVEX treatment, and not start her ARVs but after treatment, her leg was still swollen. She wasn’t sure that treatment had worked. Then she discovered that she had TB, and a week after starting TB treatment, her leg returned to normal.
When she realise that she was well, she had a T-shirt printed, with all of HIVEX details emblazoned on it. That, in a country where stigma is so great, is some endorsement! In July, she was told that her lungs are clearing very quickly. “God is good”, she says.
1 Often, people have no money by month end. Some stop eating when they run out of money. One of the reasons for poor drug compliance – ARVs aren’t good on an empty tummy.
2 One fifth of those prescribed ARVs in South Africa die waiting for drugs.
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