Clive and his photos, treatment continues - Anna

I spoke to Clive this morning, as I do most mornings. He has just taken a photo! That is something to celebrate. It is with his new smartphone, sharp contrast with the “luckybag” cheapy he has been using for a while, and courtesy of a benefactor, to whom many thanks are due. Clive’s photo is not one which most of us would relish. It is of a very nasty fungal infection, exhibited by one of the patients. In the past we have seen fungal infections clear very quickly. A few days ago I mentioned a patient called Otis who had an infection in his fingers and toes. Well, apparently that has virtually gone. No tea tree oil was used – Otis didn’t get around to it – but it has cleared. Thanks, maybe, to a stronger immune system.



A view from the Hivex treatment Centre

 We have to celebrate Clive’s photo because it represents man’s conquest of irrational fear. Helped by a patient with the same phone. So now, dear readers, you may be graced with pictures of rotting toes, glandular swellings, kaposi’s sarcomas. And hopefully, some of them looking better. Generally, they look better quite fast, and may continue to improve for weeks or months.




Another view from the Hivex treatment center

We have another patient who is very ill. This time, it looks as if she is the early stages of kidney failure, and Clive has warned her family that she may not make it.

There has been a lot of prayer, and once again, her family report her as being better this morning than yesterday. I am looking forward to this treatment being well-known, so that people can try it early on, maybe before they are at the stage at which anti-retroviral drugs are prescribed.

This month, we may break even, donations equally expense. Another celebration. I am looking forward to the day when Clive can be paid, and a fund built up for more machines.”



Ubuntu Child filming and my last days in South Africa - Anna

3rd January

I am here again in Durban. We are here to make a film. This time a big one, directed by Jamie Catto, formerly of the band Faithless, and director of 1Giant Leap and Who we are, and funded, at least initially, by Jamie’s mother, The film has been arranged in very short time - too short to do much about funding and I am so grateful that Jamie’s mother stepped in. Thank goodness for mothers. It is thanks to my mother (her legacy) that I have been able to spend so much time on this, and this backing of Jamie, is stunning.
When Clive was asked to treat a group of children, I suggested a camera in the corner of the room. Next thing, Jamie had offered to make a film, and his mother had offered to fund “our” part of it - all that which was not the film crew - and then later, when time proved too tight to get in the film funding, that too. Wonderfully generous. I think it will make a difference to the lives of many.


Ubuntu Child's pulicity image

This film, provisionally entitled “Ubuntu Child”, is about children. HIV+ children, who are undergoing HIVEX treatment. It will look at their world through the eyes of poets who are working with them. The poets will be with the children, look, listen, find out. They will travel to the children’s homes, see their world and what it is to have HIV here. We, my friend Annie Minns, who s a wonderful therapist, Clive, and Mahoye, who helps Clive, have worked with Cameron and Warwick, the engineer, to move the equipment, set up the theatre. The theatre is a good space, but painted entirely black. We work to introduce some colour. I want big rolls of coloured paper, but there is nothing - just 4 packs of crepe paper - 2 white, one orange and one blue. We pin them up, and it does lighten things just a little. 

The theatre, with added children

 In the evening, we are to have a meeting with all of the poets, musicians, interested people, and the film crew. Around 50 people. Jamie arrives late, one of his party having had entry problems. Readers, if you are tempted to come here, remember that you must have a visa if you want to be let in...

The meeting is tough. It seems to me that Jamie has not read the material that I sent to him. He has wanted to remain detached, to avoid his opinions being affected. I am completely comfortable with scepticism, indeed I welcome it. I know that if people keep their eyes and ears open, they will see and hear extraordinary things, and that this has all the more power when they are free to form their own impressions. A consequence of this though, is that everyone else is also uninformed, sceptical, and in some cases, downright hostile. These are people with integrity (I think that being a poet and the kind of introspection it requires and fosters, develops integrity). The same questions that everyone asks; “if this is so good why isn’t everyone using it?”; “why hasn’t it been approved?”; “where are the peer reviewed publications?” I am really looking forward to the time when those questions are no longer asked - when studies have been published, and approval has been given.. Some questions result from a lack of awareness about how these things work - they would like the work to have been done by independent scientists, not funded by HIVEX. But no trial is done like that .. Work is almost always funded by the drug company which is developing the drug, the company developing new equipment. It is up to the scientists of the independent research body - in this case the University of KZN - to ensure that their findings are impartial despite the source of funding.

I am very impressed. By the quality of people, and the number, and the local support. Spirit, passion. The poets introduce themselves - this is going to be exciting.

4th January - Treatment begins

This is the first day of treatment for the children. We are there long before - nervous and excited. There has been so much preliminary work - meetings “under the tree” - literally - with the community leaders and workers in Illovo, the rural area where many of the children live, meetings with the families and guardians, organising buses in areas where transport is difficult, some blips, as the orphanage that had originally asked us to carry out this treatment got cold feet, worried that this could be regarded as abusive of their children. It seems a shame that a safety-approved treatment, cannot be offered to children, who may not be getting ARVs. 

Illovo, the home of  many of the children

It has been so hard to organise this. Such a knife-edge. People have had so many disappointments. The vaccine trial which had to be stopped because it accelerated people’s conversion to a seropositive state (i.e. one in which the virus becomes active after a period of latency). Will any children come? Will they get cold feet? Clive and I know that the people who do not know this country and this disease well will have no idea how tenuous this is. What a massive part shame plays, so that it will be hard for people to come...

A bus arrives. 15, maybe more, children from an orphanage in Verulam, a town 30km north east of Durban. They are all looked after by one extraordinary lady, who took on the task after she retired and her husband died. 24 children live in her house, and she keeps an eye on another 6 in a nearby settlement, who are looked after by their elder sister. 7 children, 7 fathers, not one in touch, youngest 5, mother dead, all but the eldest born HIV+ . It is not an uncommon pattern. The children.. Enter, quiet. Through the tunnel of the black entrance into the black cavern of the theatre. In a line, hand in hand, big eyes looking up. Quietly, no-one breathing a word yet, they sit on the floor in the large space between raked stalls and stage. We are all quite awed. For some of the children, this may have been their first time on a bus, their first trip into a city. For us, the enormity of what we are about to undertake. The lives of these little people in our hands, so trusting. We wait for the second bus, bringing more children from the rural communities of Illovo, before saying or doing much at all.

A message from the bus. It is on its way. Packed. A 26 person bus crammed with 39. Hooray.

On Tuesday we had a concert as part of the film. Music, the poets, a gospel choir. It was stunning, the theatre full. Children, treated adults, camera crew, poets, the lead singer of Freshly Ground, a big SA star, people we had texted earlier that day.. The Head of a major hospital, here in central Durban, past patients...

Last night, our director having gone home, the poets, who have come from Durban, other parts of South Africa, the rest of Africa (Lesotho, Ethiopia) and the world (America, Sweden, Switzerland,) and none of whom have been paid (have even, in one case, paid their own fare, because our budget wouldn’t stretch to Los Angeles) organised a poetry evening at the BAT Centre, in Durban harbour. Our poets are slam poets, rappers, political, lyrical.


Croc e Moses chatting to the children

There was a ticket price, and there must have been publicity, because people brought toys and books (and a trampoline) for the kids. An open mike session, of maybe 15 local poets, including a couple of big names. Then “our” poets, Including Croc e Moses, Henry Bowers, and Sage Francis who were truly stunning - talking all the way through of what they have experienced over the last week - courageous kids, miracles, and ending one of the poems written for the kids, which I reproduce below. The BAT Centre was packed, so that part way through, we stopped to take out the tables and chairs to let more people in.
I think it will be on You-tube by now.

The Durban poets plan monthly fund raisers culminating in the big one when we launch that film. Of course, they raise more than funds.

4-16th January


The kids practise traditional Zulu dancing

 I can’t believe that I wrote nothing! We were so busy. An extraordinary, moving time. So many lovely souls. I must write something because the people who worked on this were stunning. The poets: Sage Francis, Henry Bowers , Rich Ferguson, Ewok, Croc e Moses, Cool Fire, Menzi Maseko, Busi Gqulu, Ntando Cele, Mphutlane wa Bofelo, Liquidkzn and others. The wonderful crew, all volunteers: Naro, Jimmy, Ray, Jan, Marco, Phillippa, and Karen, who held so much together, Lindiwe who marshalled children, Angela, who fed people ( a major task), the children, and their parents and carers, all of whom, bar one, were HIV+. For now, if you want to know more, you will just have to look at Jamie’s blog, and Sage’s, and the Facebook page for the film.

Impromptu dance shows were a popular way to pass the time

As we put this up (in September, sorry!) I can tell you that the community leaders tell us that the children are all very well. One little girl, who was very sick, has really been through the wars. She was malnourished, had untreated TB, and has been put onto ARVs and eventually treated for TB. It will be hard to see how she really is until her TB is fully controlled. In this area, TB is the major killer, with some specialists estimating an 80 – 90% infection rate amongst people living along the coastal strip. (Please, someone, give us the money to do a clinical trial on TB, already tested in vitro at an American University. Let us do something about it…)

Sage Francis says his goodbyes

17th January
At the treatment centre in Commercial City in Durban. Clive picked me up around midday, after a busy morning. Lots of people finishing off treatments that they started at the Stable Theatre. By the time I arrive, much calmer. I talk to a music teacher and drummer, referred by one of his students. We talk about drumming as a way of drawing people in - days ago I told Clive that on my wish list for purchases for the treatment room, after bean bags and cushions, is a drum.. but we agree that several would be better - djembes- great for getting attention, helping release emotion, taking people out of their heads and relaxing them; something that helps people bond. But, sadly, not acceptable on the 15th floor of a tower block, surrounded by offices.

The Music Teacher has few students - in a country with 50% unemployment their parents discourage the study of music. But he tells me that sometimes they do not come, because they must fetch drugs, or have hospital appointments. He wishes that the stigma of HIV would go; is relieved that in this space no one is chiding him, behaving as though he must be irresponsible and promiscuous - apparently, that is the nature of many treatment programmes - they make people feel very bad about themselves. He asks me where the white people with HIV are. Clive is the first white HIV+ person he has ever seen in the flesh - at least knowingly. I tell him about a large scale study that was done across workplaces in South Africa - 22,000 people, all volunteering to be tested. Overall infection rate, from memory, around 20% amongst the black workers and 3% amongst the white. 3% is not nothing. It is around 10 times more than the UK infection rate. I would still be worried, being white.

Several people here had been treated for TB. TB is a cofactor for HIV. In other words, it accelerates the progression of HIV, and vice versa. Many HIV infected people die of TB. Sam, who has a successful video editing business, tells me that it is not routine to test TB sufferers for HIV. Seems odd to me, given that they often go together. In South Africa, 50% of people are infected with the TB bacteria1, but only 10% go on to develop TB. Unless they have HIV, in which case 30% develop TB, rising by another 10% each year. One day, we will be able to treat TB too. Just needs money. Lab work already done, and of course safety is established. It would be good to have a Phase II/III trial to establish efficacy. We ask those who have TB to get treated for it before coming for HIVEX Treatment. Don’t want to unnecessarily expose a compromised group.

One man has a terrible fungal infection in his fingers and toes. His nails are quite destroyed. I recommend thyme oil, and if that is too hard to find, tea tree oil. I wonder how it will respond. One has to recommend what is available, and affordable. No good suggesting expensive anti fungals.

19th January.

A white pastor, Lindsay, brings in a very sick man. He is the sickest person with AIDS that I have ever seen. Three months ago, this man was painting Lindsay’s father’s house. Apparently, he seemed well. Now, he is so skinny that he has had to be dressed in Lindsay’s 11 years old’s clothes, and they are dropping off him. Lindsay had been trying to get hold of him for three months, and did so, yesterday. It is improbable that someone so emaciated is still alive. He was living in a house without water or electricity and must have been facing a miserable death. Lindsay got him yesterday, washed him, and brought him here. He has had three doses of a rehydrating fluid, but when we try to give him water, vomits. I cannot imagine what this man weighs, but not much more than dry bones. We lie him on the floor, and I go out to hunt for a mattress. It takes a while, . I do not know the Durban shops - have barely been out - and the shop assistants do not know their stock, so I am sent upstairs to find yoga mats that do not exist, and deflected from the area where I find, eventually, a camping mattress. Sick as he is, this man is not too sick to be polite. It breaks my heart to hear him thank me, as I tuck the mattress underneath him. He cannot lift his head high enough for the pillow. Clive and I leave him to Mahoye’s care, and as we are driving to the airport, I ask Clive if Mahoye could handle his death, if it occurred this afternoon. I wonder how he would be treated in a hospice - would he be on a drip? His is so skinny it would be very hard to insert a cannula. We have treated him with dignity and kindness, silently prayed and gently and firmly told him that he is going to be OK. I guess that most people with stage 4 AIDS are finished off by TB, pneumonia or Malaria, before they get to this stage, but here one really sees what is meant by a wasting disease. This man is starving to death, unable to absorb anything. We have decided that he should have a long dose of the treatment - we have discovered that when treating the very ill, who inevitably sleep, it can work well just to let them sleep as long as they wish. We call Mahoye from the airport. Our man - Protus - has survived his hours on the floor. Mahoye reports that he said “what have you done to me? I feel a different man”. We clap a high 5. Dare to hope that this machine can bring him back from the dead. I so wanted to take photos - wouldn’t without his permission - and he was in no state to ask . Clive now has a camera-phone, but has a phobia of both photos and technology. I really hope that he can overcome both enough to make a record.

I doubt that Protus had more than 24 hours to live, and I have no idea whether we can save him, whether the damage that has been done already is too great. We, and Lindsay, will try our best. The experience of seeing Protus has shocked everyone, and Otis, who looked so very ill yesterday, now looks almost robust in comparison. Everyone in the room must be seeing their potential fate, and it isn’t comfortable.2

I am flying back tonight. many balls in the air - still, we are a way from breaking even, and it seems we are nearly there. We feel as if we could be an ace away from breaking through. I think we need money for more machines - and how to get that when as yet, we are treating just a few people daily.
A former patient is in trouble. She is a nurse - the lady who had terrible lip dystrophy, lactic acidosis and peripheral neuropathy, and seemed to respond very well to treatment in November. Yet her CD4 count has fallen sharply, and in HIVEX experience that is unknown. She feels bad. What has happened? We do not know. Could she possibly have been in contact with infected blood, become reinfected?. She is not the kind of person to have been reinfected through sex. I hope that we can get her seen by a good doctor. One thing that I do not like in the South African treatment regime, is habitual and chronic use of antibiotics alongside anti-retroviral. To my mind, that is dangerous. I think that antibiotics should be reserved for cases where there is infection that needs treatment, not given chronically, as it seems to be here, at least by the public clinics. This lady stopped her ARVs after a few days of treatment, and my guess is that she stopped antibiotics at the same time. What shape would her gut be in, racked by thrush as she was (candida). Is it possible that she has had a massive fungal infestation? Could that have had this effect? I hope that we can find out.3

Oh, I will miss all this. I want my kids, and I want to see how this develops, too. I also want hugs and love and sympathy.

1 More, estimated as high as 80 -90% on the coastal strip of KwaZulu Natal
2 Protus got well. He slept in front of the equipment for most of the first day. But we couldn’t get him to drink – he was vomiting it up. So Clive decided that he must go to hospital to be hydrated. We thought he would never come out. But he did, and completed his treatment and is now back working, and apparently “causing trouble” – which I take to mean, living his life!
3 This lady did get better. It turned out that her sickness was due to other things. And some people have become sick, after responding very well initially. I will write more about this soon. We want to do more trials!

http://www.croc-e-moses.com/  Croc e moses official site
http://www.sagefrancis.net/ Sage Francis official site
http://www.myspace.com/creamyewokbaggends Ewok myspace page
http://www.myspace.com/richferguson
http://www.facebook.com/rich.ferguson1 Rich Ferguson myspace and facebook page
http://jamiecatto.wordpress.com/2011/01/18/poets-orphans-and-a-possible-cure-for-aids/ Jamie Catto’s original blog post
http://www.facebook.com/#!/pages/Ubuntu-Child/110235772376426 Ubuntu Child facebook page
http://www.myspace.com/liquidkzn Liquid KZN face book page