From The Sublime to The Ridiculous! - Clive

The HIVEX treatment centre has been operational in Commercial City in Durban for three months. A diverse group of people, of different races, cultures, ages and genders has visited the centre either for treatment or to find out more about this extraordinary process.

People have come individually, hoping to be treated away from the “eyes” of family and friends, deeply locked in the self-imposed prison of stigma. There have been couples who have presented for treatment too, anxious to free their relationship of the burden of HIV. The centre has also enjoyed the company of a whole family coming for treatment. Some have travelled inter-continentally showing great faith in creating a better life.

Most newcomers enter a large room feeling anxious to expose themselves to the others who are there for treatment. But they are soon embraced into the spirit of the environment which is about sharing and healing. People reach out to each other to share deeply with each other. This becomes an unstructured and organically developed support group, that evolves dynamically as people come and finally leave to start a new life.

Some weeks ago, a man in his mid-thirties came from treatment sporting a big bandage around his neck. Beneath this dressing was a hugely inflamed glandular abcess that looked angry and uncomfortable. The man was weak and could hardly walk, having been emaciated by the effects of HIV on his immune system. Within days, he reacted like the proverbial phoenix as his energy levels were restored and he was capable of easy interaction with his fellow treatment patients.
At the centre during this time, was a pretty nurse who arrived with her delightfully behaved young daughter. Before long, one noticed the interest that had developed between the nurse and the man with the bandaged neck. Cupid has no boundaries and right in the heart of healing, a new love relationship was borne.

More recently, late one afternoon, amid the chatter of a small group of people being treated, a vibrant woman started offering her treatment buddies lingerie for sale! All sorts of exotic ladies underwear suddenly started being displayed which instantly broke any remaining formality in the group. Laughter became the order of the day as several humorous taunts suggested which underwear would most suit the two men in that group.

From the intense seriousness surrounding treating HIV to the jocular humour of a lingerie sale! HIVEX is transcending barriers and may well prove to be an antidote to breaking stigma in time to come. Right in the heart of something so very serious, emerges the human desire to laugh and be joyful.

Treating children from the Ningizimu Special School - Clive

Over the past two weeks we have treated six children from the Ningizimu Special School for disabled children in Durban. Most of the children have learning difficulties.

We treated these children for free as part of good social practice.
All six students responded extremely well and teachers at the school have commented favourably on the amazing visible change in these youngsters.

School children - not from Ningizimu Special School

Having the children in the treatment room was a breath of fresh air. They did their thirty hours of treatment playing cards and other board games. Their sunny disposition was an uplifting influence on the other patients who sometimes take their treatment with a sort of grave reserve.



School children - not from Ningizimu Special School

 One of the boys in that group has had hearing difficulties. His mother indicated that they have really battled to get proper treatment for this hearing problem. What is extraordinary is that his hearing has improved radically whilst undergoing the HIVEX treatment. HIV tends to affect everyone differently. It is encouraging that the treatment has had such a discernable beneficial effect on this boy’s hearing problem.

 Last Friday, I was invited to the School’s 30^th anniversary celebrations. A vibrant festive function with about 300 people! What was clear is that HIVEX has left an indelible stamp on this community.

Our thanks go to Lindiwe Mvubu for making this happen. She is an amazing woman who does considerable work in the HIV arena in disadvantaged communities.

Reaching into the Web of HIV - Clive

Since the end of September, Clive has been operating the HIVEX Equipment in Durban.

Clive

A few weeks ago, I was invited to talk to a group of students in Durban who had just graduated from a three-year study course. During my talk about HIV and the need to respect ourselves sufficiently so as to never be exposed to the virus, I noticed a pretty young woman sitting in front of me with unsightly marks on her arms.

Having been around many people with HIV, I soon realised that she had evidence of Karposi’s Sarcoma (a skin cancer found in people with advanced HIV). It is sad to see young people with the promise of life ahead of them, already being cut down by the ravages of the Human Immunodeficiency Virus.

The discussion with this group was light, yet serious and I urged them to get tested and if diagnosed HIV+, to urgently do something about their infection. Problems that are confronted become workable solutions!

The next day, this young girl arrived unexpectedly at the HIVEX treatment centre and asked if we could talk privately. She told me she was HIV+ and wanted to come for treatment but could not afford to pay anything. I agreed to treat her for free.

That afternoon, a woman in her early sixties, a nursing sister, appeared at the treatment centre. She told me her daughter had heard me speak the day before and asked if she could start being treated herself. This woman has huge visible signs of the negative side-effects of anti-retroviral medication. She has been on medication for HIV for over ten years.

Within days of starting treatment, the nursing sister had brought one of her nursing colleagues for treatment, as she had already witnessed a considerable improvement in her own condition. She went on to tell her neighbours, whose 24-year old son had a CD4 count of only 11! After only a week of treatment, this boy’s mother came to see me to thank me for the miraculous change in her son’s condition.

Just before 6am one morning, I received a call from a lady who asked where I was. She told me she was waiting for the HIVEX treatment centre to open. On arrival, I noticed that she was related to the nursing sister but did not want anyone to know she was being treated. The next day she arrived with her partner who has some fame in the sports world.
The young lady who was treated, showed an amazing turnaround and has returned bringing friends who also have the virus. The marks on her body have started to fade and she is trying to pluck up the courage to tell her brother who also has HIV. The silencing effect of stigma is preventing so many people from doing what is necessary to get themselves treated, keeping HIVEX a secret and preventing them from sharing its benefits with friends and loved ones.

Over time, networks grow organically. They begin slowly and much like a snowflake which finds other snowflakes to become a large snowball, so a process begins which carries on silently but effectively.

In the future, others who were at my initial talk will come forward when they are ready to make “positive” changes in their lives. This will in turn generate a meaningful response from others who then see the visible signs of radical change in someone else’s health.

HIV spreads virally! The rate of infection accelerates exponentially unless measures are enacted to thwart the process. Likewise over time, a treatment such as HIVEX might also start to spread virally, once sufficient people have seen the benefits for themselves and feel motivated to share this with those they really care for.


HIVEX might also help to break the stifling deadlock caused by stigma, as those treated begin to understand the full potential of a second chance! When people perceive HIV as being treatable, the grip of stigma starts to wane.


I marvel at the impact of my seemingly unimportant talk to a group of young and enthusiastic students. The ripples from that pond continue to create waves and lives are changing in the most profound way as a result.

World AIDS Day 1 December 2010

Today, December 1st, is World AIDS day – 

what are we doing and how are we getting on? - Anna

My meeting, at which I hoped to advance a clinical trial in India, was cancelled because of our weather (snow and very cold, and people marooned all over the place). I battled across London for the first of a series of examinations & treatments – my lung capacity, as measured by my blowing into a tube, a task which my lovely personal trainer gets me to do regularly, has more than halved  since I came back from South Africa, and although I feel absolutely fine,  I was beginning to wonder whether I had picked up TB, pneumonia, had a secret heart attack – that kind of cheerful thought. My first appointment was with my nutritionist and osteopath, who told me that me skull bones were all jammed together (stress) and that she thought that the cause of the breathlessness was also stress – diaphragm not moving.  I came out apparently unjammed, and feeling much better – later in the week my doctor pronounced – No Heart Disease – and reckoned that the apparent reduction in lung capacity – which had dropped still further - was because I am not blowing properly.  I have to practice, and I should get it back up to its normal 700 (now 300…). I am relieved - ; think there is something; and am convinced that the complementary practitioner is right – it is stress. I have been working so hard at this, and doing little else, and a flow of cash would be a lovely thing.

Clive was on his way to Johannesburg, to swear allegiance to the Queen, and confirm British citizenship. That means that one day, we can get him here, to talk.  Readers, come! It will be worthwhile. Clive, more than anyone, should wear a sandwich board; 

“Exhibit One” 

 “I’m FINE”  

Then, he was invited to talk to a major bank, one of whose employees was treated. 

Like many of those we have treated, he is being watched.

Michaela, a wonderful musician, along with her many other talents, was playing her bowls for World AIDS day at the Medi Spa http://www.medispa.co.za/index.htm
Ubuntu Wellness Centre  http://www.ubuntu-wellness.co.za/Contact.aspx , praying in good energy for HIVEX. Michaela will have a new CD out shortly. It records her playing with South African musicians. It has been produced by Howard Butcher of Peace of Eden, and I think it will be really special.  I feel very privileged to have heard Michaela play in different places around the globe.

Michaela, playing her bowls for World AIDS Day

On this day, out news reports on events worldwide – reports Caressa Cameron, Miss USA, talking at a conference on mother to baby transmission. This can be prevented quite easily and cheaply, but still the UN reports that last year 370,000 babies were born with HIV. Half are expected to die before they are two. Now why can’t we try to strengthen their immune systems using safe HIVEX equipment?  Because we aren’t out there.. we don’t have machines, registrations, money..Yet. Bring it in! In South Africa, more than 30% of mothers-to-be test positive for HIV. In July, we met a young mother who had been treated by HIVEX a couple of months earlier, when she was around 8 months pregnant. Her baby was a strapping little bruiser who looked as healthy as any baby I have seen. We learnt in September that the baby had tested negative for HIV.  That young woman had had very little sexual experience, had almost vertainly contracted HIV from her partner, and was in deep shock when we met her. At that point, she had not yet summoned the courage to talk to her partner.  Shame, stigma again. Our press reports that 25% of UK HIV sufferers don’t know that they are HIV+, and our budgets are cut, so there are fewer messages to bring risk to people’s attention. And, good news this year.  HIV infection rates are dropping, though not yet in South Africa.

 `                                                       

Day 3: HIV in India - Anna

November 7th 2010

Today is the day of the wedding ceremony. And the final party in a long series of parties, Father Joe, long-standing friend of my host, is one of the two priests who leads the ceremony - a spiritual blessing. It is lovely. I am very impressed by the thoughtfulness, learning, and care for others expressed by the people I meet. They are privileged people, and are using their wealth skills and connections to build businesses which will bring Indian excellence into the world, are universally hardworking - doctors, businessmen. The whole time that I am in India (and admittedly, for quite a lot of it I am alone, with noone to talk to), I hear not a single conversation about material goods - nothing about what anyone has - no discussion of possessions. We talk of the work that people are doing, in medicine, business, of the new businesses they want to create, of biology, the legacy of the Portuguese, who were the rulers of Goa from the 16th century until 1961, when the Indians invaded and the Portugese left. I think it would be different in England. I would come away with more information about material achievements.

The ceremony includes the Song of Soloman, hindu and Islamic references, and a poem based on a poem by an American poet. Generally, over my stay, I am inpressed by the knowledge and positive reganrd that people ha ve of other religions. Father Joe says that [the meaning of the word “God” is “Joy” . I don’t think I have ever heard this before, and I like it.

I sit next to Father Joe. The Kripa Foundation, http://www.kripafoundation.org/Home.html which he established and runs, has 27 centres for addicts - alcahol, and drugs. Many of them are HIV+. I have already met one of the doctors who works with the Foundation and of all the doctors I have met so far, he is the one who immediately “got” what I was talking about - the importance of apoptosis as the measue of disease progression - something which is not common amongst HIV sufferers or their doctors yet. India has almost 6m HIV+ people, making it the country with the largest no of HIV sufferers afterr South Africa, There is huge stigma, and apparently, because of that, a problem with conpliance - Indians do not want to admit that they are HIV+ and so they neglect to take their drugs…

I can’t judge the poverty of the country from Goa, which is the richest state, but Goa, certainly, is far from black South Africa - in South Afria traditional forms of living have been destroyed largely, leading to social breakdown, whereas here, it seems that society is in good shape, eveloving into the future. There is a palpable sense of pride, of joy. People are warm and have time for others. One sees far more men that women, and some of them do look as if they carry anger. But there is no sense of hopelessness, of victim hood, such as one can find in South Africa.

　

Day 2 : Comparing India and Africa, and Cell Biology - Anna

November 5th 2010


I arrive at my hotel in the early hours to find that my one and only bank card will not work. I cannot pay my taxi driver. In a country of such poverty, and coming from one of such wealth, I am embarrassed. At 4 in the morning, we scour the town’s cash machines - give up after 8 - I ask the driver to return the next day. The next day I am alone. I discover later that I should not have been - was expected to join others in a drive through the countryside to lunch - but nobody told me. So I work on the bankcard / driver problem, walking into the nearest village, Calangute, to try more machines, and then phoning and emailing my bank, who have been told of my plans. You know how hard it is to talk to your bank - well, it is harder from India. Eventually, it is sorted.- despite my best efforts, the bank had “carried out a security check”. Being in India, alone, no money, on Diwali, on a Friday with the UK banks about to close for the weekend, did not feel very secure, even though I knew I could ultimately call on my host.. I had about 30p. Any mother will know that one NEVER has any money with children around - somehow, it all goes. And it was an interesting experience. Knowing that, for a time, I could not take a bus, buy a bottle of water or give anything to a beggar - I felt a different sympathy with those around me.

I knew that I would like India, and I do. I think that I am very lucky to have my introduction to India take place in Goa, for this is the richest state in India, and whilst many people are poor, they look as if, somehow, they have enough. There are clearly many very wealthy Indians, and an affluent middle class, some of whom are staying at the hotel, but looking at those on the street, whilst they may have very little, they look generally healthy, and happy. They talk. I am not hassled, can walk for miles with only a handful of requests to buy, and they are almost always equable when I refuse. Not the desperation I had feared, and certainly not the poverty of Africa. People are proud, and I am sure they deserve to be.

One thing that does shock me is the mess - the litter everywhere - and of course, litter no longer disappears into the ground. So much plastic detritus. It is ugly and ubiquitous. If I ruled the world I’d be tempted to ban plastic. Back to paper, banana leaves, cotton and palapa.

I am reading Bruce Lipton’s book, “The Biology of Belief”, and thinking about the way in which the HIVEX treatment works. It is not always easy to get lucid explanations out of Russian inventors, and whilst I have always known that the treatment works, and the bio-chemistry seemed easy to grasp, I spent months grappling with the physics trying to get my head around it. I usually succeed in understanding things, but here, my understanding is incomplete. I have seen the extraordinary complexity of the equipment - arrays of strange windings and antennae, and I know what is does and the effects it has - but… I even sent my cleverest friend, the one with the starred First from Oxford and the postgrad diploma in Spectrometry, to quiz other Russians who had worked on the Equipment,. and he basically came back and said “all very interesting and beyond you, dear.”.. I have always been very suspicious of those of my acquaintance who confidently pronounce that quantum physics has the answer, possibly because they are the same friends who tell me that their moon is rising in Aquarius. It is not that I think they are wrong, but that I don’t know that they are right..And I think I am putting pieces together in my mind. Physicists, you may laugh. Pity the poor lawyer.

Enjoying diwali holiday

 Bruce Lipton, a cell biologist, considers that biologists have been remiss in failing to appreciate the importance of quantum physics to biology. I shall have to read the books and papers he refers to before I can relax (not easily accessible form Goa in a hotel without internet access). Discussing proteins he says “receptor antennae [on the protein] can read vibrational energy fields such as light, sound and radio frequencies. The antennas on these “energy” receptors vibrate like tuning forks. If an energy vibration in the environment resonates with a receptor’s antenna, it will alter the protein’s charge, causing the receptor to change shape {Tsong,T.Y. {1989} “Deciphering the language of cells” Trends in Biochemical sciences” 4:89-92}. Later (p88) he says “..the science of physics implies that the same harmionic resonance system, by which sound waves destroy a goblet or a kidney stone, can enable similar energy harmonics to influence the functions of our body’s chemistry…. There is enough scientific evidence to suspect that we can tailor a waveform as a therapeutic agent in much the same way as we now modulate chemical structures with drugs.”
I think that is exactly what this equipment does - and it does thos by feeding back the HIV proteins’ own particular resonances. Bruce Lipton also talks of the speed of electro-magnetic signals, and I wonder if that is why we see such rapid responses to HIVEX treatment.


 This week, the Treatment has included a man with a CD4 count of just 10, another with a CD4 count of 14, and a very ill street child (untested). We were nervous about including the first man, because he was so very ill , but he did not seem to have organ failure Clive made up a bed for him and he slept through the first treatments - and apparently, he is doing phenomenally well. His body has to recover from all it has been through, and his energy is returning, along with his appetite. After the first very ill person, a second, another bed, and then the child, a boy, who slept and slept, and whom Clive sent out with money for food. There has also been a nurse who was suffering from lipodystrophy caused by protease inhibitors used to treat HIV (fat redistribution – legs become skinny and the rummy becaomes bif – apparently this lady looks as if she is 9 months pregnant). She also has peripheral neuropathy (damage to the nerves of the peripheral nervous system, again caused by anti-retroviral drugs used to treat HIV), and lactic acidosis that is so bad that she must sleep sitting up….I do not think that people suffer so in the west - and we have so many more doctors, with so much more time, and so much more to offer them. Bacis ant-retroviral drugs have become affordable here. Originally, they were priced at US$11,000 per patient per year – that has now dropped to less than $100 for a basic drug mix – but prices rise very steeply for newer, patented, dtrugs. It is a mistake to think that ARVs can offer a solution in Africa - the world can’t afford the doctors it would take, let alone the drugs. What happens to the sensitive, the underfed, those without the I.D. papers which are necessary to access the clinics (and which are regularly taken away from street people)? A propos of those without papers, we also have a Tanzanian and a Nigerian - not desperately ill, but wanting to deal with their HIV before they get ill. That is one of the beauties of the HIVEX Treatment.- no financial disincentive to treating early. No costs savings in waiting.

Update –on my way to India – Anna

November 4th 2010

I have been a rotten blogger recently. So much… Quick resume.

We are still treating in Durban, with Clive running treatments, and talking to lots of people who want to do it, who are nervous. We aren’t running the tests we would like to run because we aren’t happy with the labs, but so far, everyone feels and looks much much better.


I am sitting in Doha airport, Qatar. I can’t remember if I talked of the last time I was here, making a second trip to South Africa. This time, I am on my way to India. To Goa, to a wedding. I am excited. It is the first time I will have been to India, and I have always wanted to go. My mother had very close Indian friends, and on rare trips to England, they came to see us, bringing me gorgeous bracelets that brightened a Nottinghamshire childhood. Once, a box of mangoes arrived at Christmas. How our world has changed, when any local Tesco’s stocks mangos for 75p.


Last time I was here it was Ramadan, and the airport was quiet and deserted. I didn’t realise that it had shops. Today it is bustling, colourful, and much more like most airports anywhere. But of course, the ethnic mix is different from Heathrow or Schippol, and I love it. There is a man in front of me in turban and business suit, beautifully dressed, and bare feet. I can see into the mosque, in which there are 20 or so men lying on the floor, as well as a few on their knees, obviously praying. The mosque seems an attractive place to be.

Lighting candles in a Portuguese church in Goa, India



I am hoping that I will meet Father Joe Perreira, of the Kripa Foundation, http://www.kripafoundation.org/ a close friend of my host. The Kripa Foundation runs community-based programmes for addicts - alcohol, heroin. Many of them are HIV+. India has the largest number of people infected with HIV, at 5.7 million. Like South Africa, a great deal of stigma attaches ot the disease.

Footnote, the estimate of India’s HIV infected population has recently been lowered, to 2.3 million, making it the country with the 4th highest no of infections. You will gather than the business of estimating infection is not yet exact.

HIVEX Continues

It is grey autumn London. My house is cold. Unheatable – the house needs big building works. It was built in 1880, and survived quite nicely until a few years ago when weather changes , prolonged lack of rain, caused the underlying clay to crack, and then the building itself. There are gaps around windows.  The insurers accepted liability around 7 years ago, but so far, no work has been done.  I have had mixed feelings – haven’t wanted to disturb my children’s education,  wanted to have work done when I could afford extras – but I am so fed up of this… Durban’s warmth beckons. I wish my children were not such Londoners, and would come with me.


Today, a new group begins treatment.  Gradually, people are learning about us. The treatment which began on 20th has gone well. Cameron, who was worried about the move of equipment from his apartment, is happy.  The new place is great. It feels good. One person, another Londoner, a lovely gay man, tells me that it needs some softening.  My own tastes are for utter simplicity, verging on the bleak.   And I know that he is right.  It is a conference facility.  I ask him please, to go out and do what is needed – plants, softening.  Michaela would be good at that.  But she too is here in London, shipping possessions back to South Africa, where she has a long term volunteer visa. And Durban isn’t her place.  She loves Cape Town.

Where Michaela lives now, in Hout Bay, there is trouble. Hout Bay is a Cape Town suburb. Beautiful, with a fishing harbour. It has a lovely bay, and a pretty centre, around which one can actually walk.  Nice restaurants. I ask myself where it reminds me of, and it is New England, Massachsetts, Martha’s Vineyard. And yes, so much is not that – the steep  hills, the  sun- perhaps the scale of the bulldings in the centre, the water, small boats.




Michaela in Hout Bay

  Around the edge of Hout Bay there are informal settlements – one right opposite her building. One of these is in the news.  It tells us a lot about South Africa today. Shacks build alongside an overflowing community of council flats on the side of the Sentinel mountain. At first the government objected, and then, in what was a ground breaking initiative, agreed a shack-upgrade programme, provided there was no new building. But it hasn’t delivered, and people have built new shacks on the firebreaks, and part of the mountain has been sold for property development.  When demolition crews arrived, there was a riot. Petrol bombs and rubber bullets.  





Shacks being destroyed down in Hout Bay

  The ANC General Council, which takes place every 5 years, has just finished in Durban. President Zuma has been asserting his authority, and has promised to interview each of his ministers in turn to quiz them about delivery.  Things often take a very long time in South Africa, and there is a great deal of corruption. I hope that we will find a way through with our particular issue whilst maintaining our own integrity and that of HIVEX – not letting any of those who might have the power to do so influence the company away from what we want – the delivery of affordable help to those to whom ant-retroviral drugs are not available.

HIVEX is with me everywhere. At a Crouch End party I talk to a friend about work he has been supporting. at Tsholofelo Community. My friend has been working with Sister Georgina Boswell and Brother Joseph Kiely .  They were part of Catholic missions which were bombed during apartheid because of their support of the local black population.  The two of them stayed, and worked with squatters – workers at the nearby platinum mines, often illegally in South Africa from Mozambique, Lesotho or elsewhere. People were dying – this was before the full impact of HIV was realised, and since they could not provide what the community most wanted – water – they provided the most important thing they could – care for those with HIV. Children of 6 or 7 were looking after dying mothers – you have seen all of that on TV.  After a while, the mines provided test kits, and it was found that 40% of mothers were HIV+. The Bafokeng people helped, and  permission was given to build, as long as the structures were not permanent. So there is an adobe hospice, and shipping container clinics, http://tsholofelocommunity.com/freedom-park-squatter-camp.php

My friend tells me that one of the communities – 12,000 people, still has just a single tap. He employed geologists, water diviners, hired equipment.  With much excitement, they sank two boreholes in the ideal spot– there is a lot of water in that area, underground.  The water should have been 60m underground – but they went 120 m before abandoning the project.  The water has been diverted by the mines. And this is typical – do not shout “Bad mine! Wicked employer!”  It is not so simple. I have no doubt that the mine owners are helping in many ways. And it can take so long to get messages through. Sometimes, when you take things in hand, as Georgina and Joseph did with their clinic, it works.  And sometimes, as with my friend did and the boreholes, it doesn’t. But waiting around for things to happen in the way that they should, always takes a very long time. Tsholofelo

The Tsholofelo Community’s supply of anti-retroviral drugs has been cut – there is less money from PEPHAR, the President’s Emergency Plan for AIDS Relief, which has funded a huge amount of treatment as part of the global initiative for universal access to HIV treatment.  PEPHAR is estimates to have saved 3.28 million adult lives.  Actually, President Obama has continued with high PEPHAR funding, but the amount to individual countries has been cut, and in South Africa, clinics are refusing to enrol new patients, turning away patients. 





Freedom Park Squatter Camp Clinic

  Because money is limited, people are often not treated until they are quire ill – the average CD4 count when a person is first prescribed  anti-retroviral drugs is 87 – well below the UN definition for AIDS _ a CD4 count of 200 if asymptomatic, 300 with symptoms. One fifth of people put onto a waiting list for anti-retroviral drugs in South Africa die before they get them. Of course I think of the difference we could make. If it was no longer financially beneficial to delay treatment. If we could simply keep people well for longer. And I think we could do much more. I think of Tsholofelo’s adobe hospice, and imagine us treating there, and the difference we could make to those communities. I want that chance.

The Next Chapter - Summer holidays, and back to Durban

Long silence. Lots to say, and I will catch up gradually. But I’ll tell you briefly what happened since the last entry and now..It been more or less full time, at least for Clive and me, so you are getting the super-abbreviated version. It’s a bit of a travesty, disrespectful to those who were part of it, and I’ll do my best to fill in gaps later.

First, importantly – Clive, Alaena and Tumelo are very well indeed.  Now 13 weeks since Clive and Alaena took anti-retrovirals. Naledi is well too, but has had pneumonia. Apparently, when she was first prescribed anti-retrovirals no-one told her how to take them, and she took them all at once, and damaged her lungs, so that one lung no longer functions. We met on my second visit, before she had pneumonia, and she told me that she was able to walk to her job in half the time, and had gained 6kg  - upto 60kg. She felt wonderful. The pneumonia was serious – she was in hospital. She says that she is fine now, and however one looks at it, the lung damage is serious. Her doctors haven’t asked her to go back onto ARVs . She told me that they had said she “didn’t have the virus and more”. An extraordinary statement, and not one informed by any test. Also one that, at least in some senses, is untrue – if Naledi had a “viral load” test – a test which evaluates particles of virus in the blood – it would certainly show up viral particles. They will be there, No whole, undamaged, active, virus should remain, but that is not what a “viral load” test monitors. The virus should be damaged, dead, inactive, but particles will still show up in tests, and likely to continue to show up for a long time.

It is time that more people realised that “viral load” has very little to do with disease progression. In 2006 there was a groundbreaking study carried out across the USA by Case Western University which showed that “viral load explains only about 5% of the variation from person to person in the rate of CD4 cell loss. Thus, CD4 depletion cannot be viewed as a simple consequence of the amount of virus circulating in the blood.”

I met Alaena, dancing in North London.  She looked magnificent. And it seems that Clive would do well to wear a sandwich board “I AM VERY WELL, THANK-YOU”. He has become an object of curiosity amongst many. Last time he stopped his ARVs (lack of money) he had AIDS in three weeks – his cd4 count plummeted from 350 to 140. This time, it has risen, so the tests show.

After our treatment, Cape Town, Khayelitcha. London for a few days. No-one met me at the airport and my children were away. Not only was there no-one to tell me they loved me, but one who matters seems to have decided that he no longer does.  I miss South Africa. My heart hurts, an almost constant pain that sometimes frightens me. Sometimes overwhelms. What would make the most difference to me in this project? Make the hard work easier? Money would help a lot, and love, of the “I’m here, I think you are great, I’m glad you are back, would you like a cup of tea, and when are you coming to bed?” kind would make a huge difference.

A couple of days in Cornwall with my younger son and friends. I don’t think I’ve been on holiday to the English seaside since I was a child, and I loved it. I’d never been to Cornwall. The sun shone and it was beautiful. We ate fish and chips and ice cream and went to the Tate. It was a relief to be able to wander around after dark, to walk anywhere. 

Then, back to South Africa. We want government approval so that we make claims for the treatment and enable it to be reimbursed; so that we can finance the manufacture of more machines (c 350,000 Euros apiece); so that it can be rolled out. In April 2007, before this government, South African Radiation Control, which is responsible for reviewing this kind of treatment, said it was safe and recommended approval by the then South African Health Minister Manto Tshabalala-Msimang, infamous for holding back the availability of anti-retroviral drugs in South Africa, for recommending “garlic and beetroot”.(Please, don’t create black and white stories – it is all more complex than that short sentence implies – and good nutrition IS important for the immune system – and what use ant-retrovirals for those who can’t take them because they have no food in their bellies?). HIVEX didn’t get her ministerial approval – were met with silence, as yet unbroken. I came back to meet people who could help, and, during a time of strikes in South Africa, when politicians were  afraid of being taken hostage, and many people were dying because they could not get anti-retrovirals, we met, and I hope, wheels are in motion.

Then, to Seville to take a little time with my son. Not much, in a whole summer. And again, it was good. We rode clunky town bikes over cobbles in 40 degree heat, and when I needed time to be with grief (I have a big pile), my son did the homework that he had left to the last moment. Then back to London, catching up, and nursing a broken heart. Dealing with questions about HIVEX. Worrying about money, for I have earnt nothing for a very long time, and almost spent my mother’s inheritance.  And I know she would think it well-spent, and so do I.

A man sits on Durban beach front.

We got our first sets of test results. It was hard to get them, and the experience was unsatisfactory. They look good, but I am worn out and disheartened by the whole process of getting the tests done, and the results over to us. They show that CD4 counts went up and viral loads went down – and I did not expect this, so early. It is so obvious that those treated are better that I don’t need the tests to tell me, and the difficulty of getting the results from the lab – the right ones, the complete tests, the delay, when tests are ready after a few hours, has worn me out, so that I take no joy from the results. The labs do work for pharma companies worldwide, and I guess we are not a priority.  But for us, it was important.  I have no idea how to make this work more smoothly.  For the immediate future, we won’t conduct tests ourselves – will ask those treated for their doctors’ analysis, and will do assessments of symptoms. Longer term, I want comprehensive tests.

We set up another treatment in Durban again, and today, it is Day 3 of that treatment, and I am not there, and feeling odd. Clive has been working flat out, and is facilitating the treatment. That means, letting people talk, letting them deal with their grief and trauma, taking them through meditations. Hoping, trusting, fearing. I can’t really talk about what is going on, unless those treated allow me to do so. I hope they will, may even write something themselves. We have a very mixed group of people, from England and different African countries, from townships, from Durban. Two couples.  Again, I am anxious.  What if? One person, only recently diagnosed, seems to have HIV-associated delirium, and psychosis, and was taken to hospital. Not clear if more treatment will be possible. We can’t risk including that person within a group. The treatment moved from Umhlanga to the centre of Durban. A different experience. Durban is a very black city, and many white people feel uncomfortable in it.  There are high crime levels. And the place we are using is good: quiet, spacious, calm, clean and well-managed. Once you get past the security guards. It is near to a taxi terminal, so people can get in easily, and we can drive right into the building. In a couple of days we will have a sense as to how treatment is going.  And I will be relieved.

Science, differently.

Sad to be seeing Alaena go. This has been such an extraordinary experience. She is going back for a festival, in rural Somerset. A different world. Michaela and Danielle film me, and I am afraid that I am a disappointment. They would like me, I think, to tell tales of dastardly pharmaceutical companies, of bribery and corruption, of Russian adventurers. But I think the world is complex, that there is much grey in the ways of men. And I think that we are mostly propelled into action by good ideas and intentions. Sometimes those ideas get twisted into bad. I do get angry too, am in essence part passionate slav, my intellect and compassion tempering judgments. For years, I have woken at night with occasional nightmares, worrying about how this treatment isn’t being used. It is easy to see that it works, watching it. Improbably fast. Some tests show how it affects the molecules that have been targeted. Irritatingly, that can’t be clearly seen with HIV - such a tiny virus - but in vitro tests on TB - a big airborne bacteria that survives outside the body - show nicely how it is damaged. It is really hard to explain the physics of the equipment. I am not going to try, here. It is a relief when people accept that it works, as they usually do But I hate it when they accept it because of misplaced faith in “vibration“. I want to defend this technology, to show the extraordinarily complex antennae and windings that create this field of such low power and such exquisite accuracy. That isn’t to decry the effects that other waves can have - sound, light, electromagnetism used in other ways - as pulsed electro therapy for would healing or pain relief, for example. But the specificity and low power of this is different. I want, one day, physicists to explain this widely, in simple English.

The HIVEX machine in action in Durban

Which takes me back, at least in thought, to Russians, and how different their science was. How, at the highest level, they were free to think, and experiment, to work with people of different disciplines, to think, freed from market demands for profit, about real healing, about treatments which might result in the end of a problem. The original HIVEX team had many people on it - physicists and mathematicians, of course, and mechanical engineers, and an economist - even, I fancy, though I may have made this up, a philosopher. Or perhaps they were all philosophers, as Russians often are.

I know the history of anti retroviral coming into Africa very well. It took a very long time. At first, drugs were simply unavailable. Then they were available, but only for the very richest. Prices which were simply unaffordable to Africa. There was a lot of pressure on the manufacturers to reduce their price. Brazil and other countries threatened to manufacture in breach of patents. In South Africa, a few brave people talked, and died quite publically. Zachie Achmet formed the Treatment Action Campaign and, although he could afford drugs refused to take them until they were Available for the whole of Africa. Drugs began to be made available, at lower cost, but sometimes did not make their way into Africa. A client of mine, used to transporting medicines across European borders, inadvertently bought drugs intended for Africa - the seller had siphoned them away from their intended market, no one monitoring whether the drugs reached their intended destination. Generic companies wanted to manufacture, and in my view, that would have been permissible, allowed by legislation which allows patents to be broken where there is national crisis. Eventually, Generic companies, and charities, did sort out a big part of the problem.

A day of rest, in the wilderness

Alaena’s last day. The film is still to be captured - put onto hard drive where it is safer than on little cassettes, and can be edited. One more desperate purchases of a guaranteed Mac-compatible had drive - the last of a few. It turns out not to be, yet again, and Danielle decides that she must stay at home and juggle laptops and available memory and the sole working hard drive… With the film captured on Danielle’s laptop, and Danielle travelling back slowly bus up to Malawi, then through Malawi before flying home, we want as much duplicated as possible. A loss would be very sad. Clive too, is working through his huge list of contacts, telling people what he has been doing, continually answering the question “How are you? How are you REALLY?“

So Michaela, Alaena and I take a day off. I need it. I am not going to work today. We want to go to a game park, but all the real parks are too far away for the time we have left, so we make our way to a small reserve on the outskirts of Durban. It is hard to find the way there. Road signs are bad, often missing or deficient. People are helpful, but often misguided. I have learnt that they can be very adamant, insist on a particular route, go out of their way, draw maps etc, and be completely and utterly hopelessly wrong. Such is the case this time. A lovely group of men informs us. And send us in the opposite direction to that we need, having firmly and inaccurately justified their instructions. At long last, we reach our park. Pay the princely sun of 15 Rand (£1.30) entrance each, then leave immediately. We have realised that we are very hungry, and have to eat NOW. Another long search for a shop, and then we are back, expecting the monkeys to raid our picnic. But they don‘t and we have a lovely meal out in the sun, under a kaffir tree. This park does not have lions, or anything very fierce. Snakes, yes, but that in all we need to look out for Impala greet us - such elegant creatures , delicate beauty. And there are lots of buck. 

We see a dead impala its leg in the air, improbably. I guess hit by a car, though how seems difficult to imagine. We walk, and it is truly a pleasure. So good to be out in untamed nature. I have missed this. The trees are stunning, and the glanced zebra (imported) and various deer the icing on the cake. There is a beautiful river. A bold soul might walk across the top of the fall, but I am not brave and I make the others return the way that we came. This is a recharging afternoon, and I would like to do it again. I want wildness.

Michaela, Aleana and myself enjoying our surroundings 

Alaena plays her flute in the forest, and although it is a South American flute, it fits beautifully, and seems to strengthen our connection with the land.

Tonight is Alaena’s last night, and we party. All of us, including Cameron. We have worked hard, and it has also been quite emotionally exhausting, wondering whether the treatment would work, and then excitement and pain, of seeing it work. Pain because of those who are not being treated, and pain because of the stories we hear of those who could have helped, and didn’t. We all let go, and several bottles of wine are drunk. I think it did us good.

Danielle, Aleana & Cameron

July 31st - Anna

We are busy every day. Clive and I are usually up at six, and often walk along the beech side and talk business. How are we doing? How are we going to bring this treatment to those who need it? It is quite a long walk, so we debate many issues. Down a steep hill, along the long promenade, past lots of joggers. Fishermen, all Indian. We never see them catch a fish. 

At weekends, the profile changes a little. The joggers are no longer exclusively white. There are a few Indians. I decide that the Indians have less leisure that the Whites, but more than the Blacks… So they can run at the weekends but on weekdays they must work. This is not a mixed society. Indians have been in South Africa for 150 years. Brought from the Raj, from Southern India, to administer the colony. The Indians we see here are comparatively affluent. I do not know if it is always so. Indians live in their own towns and settlements, and have their own shops and entertainments. The nearby casino, a perfect monstrosity, is almost entirely frequented by Indians. Michaela, Alaena and Danielle went to visit, attracted by the unusual buildings - expecting a hotel, they found a glittering palace full of gamblers, and a ghastly “switched-off” atmosphere - a place where men could be made or ruined and no-one would notice.

We go to the beach at nearby Umdloti. For the first time, we leave the built up coast and are in real countryside. It is beautiful. From the motorway, a vista of golden sand and blue sea. An occasional peppering of surfers. Umdloti is the next village. A strip of holiday apartment blocks. These are new, expensively built, staggered like Aztec pyramids to maximize exposure to the sun and views. These views are to die for. This beach is special - we can swim, in a natural pool, sheltered from terrifying waves. Actually, the waves aren’t so very terrifying, in Umhlanga, but for most of our visit, we couldn’t have swum because of the sharks - which follow the sardines, along with the dolphins. There are always sharks, but the make a special effort when sardines are around. There are shark nets, inside which swimming is permitted, but those are taken up when the sardines come, because the fish get stuck in the nets. The water is quite nice. Not many people are swimming though - it is the middle of winter. My burn has recovered enough for me to join in. Earlier, in the cold water of the pool, it leaked in a most unsettling way, the rocks here are stunning, and I would like to come back. I could sit here and drink cocktails whilst the sun went down. It is a particular pleasure to watch a group of black boys play. I was about to say that I had not seen enough black children play - this is the first time, at the beach, but actually, I have not seen enough groups of children playing, with other children. Mostly, when I see children they are with parents, grandparents. This is not a place, and probably not a country, where (white) kids can hang around on their own. I am sounding very judgmental, and it does disturb me. This is not what I want for our world. And I miss my own children.

We have to go. I am to meet a wonderful man who has helped HIVEX a lot in the past, and Michaela is to interview his daughter. I will not name this man, because he has suffered enough. He has known HIVEX from its earliest days, and introduced many people to the clinical trials. He speaks of an early group of 45 people, treated many years ago some of whom were so ill that they had to be carried into treatment. He says that 36 are still alive. One, a sex-worker, died two weeks ago. She was reinfected. He doesn’t think that any of the others died of AIDS related illnesses. What a shame that thee has been no money to monitor any of this. Our man’s job is to work on social wellbeing and development. With that in mond, we worked with HIV suffers, and with HIVEX, until he was removed from the role, for caring too much and being too close to his charges. He explains how hard his job is. He does it 24/7 - visiting the ill, the bereaved, those who have been raped, imprisoned by the children (seems a common occurrence) helps people get ID (a hard task, and one which is necessary if any kind of pension is to be claimed). Workers in his position are no longer allowed to phone others, and so he instructed his charges to call him. But sometimes they text him instead, and he is charged, and the charges run into huge amounts... Our man helped HIVEX collect 1,000 potential patients for the big clinical trial, in two weeks. And recently, he bought his 24 year old daughter, 8 months’ pregnant with his first grandchild, for treatment.

Whilst I talk to her father, Michaela interviews the new mother. She has a strapping baby. He looks far older than his one month. A bruiser. Certainly not wasting away. He doesn’t look like an HIV positive baby. But his young mother is traumatised. Shocked. She may be physically Ok, but she is carrying around a huge burden. She hasn’t told anyone except for her father about her HIV status. Not her partner, the baby’s father, from whom she almost certainly contracted the disease. She can barely talk about it, and needs comforting. No emotional healing has taken place yet. I am persuaded of the value of carrying our this treatment in groups. Convinced that if this young woman had experienced the care of a group, the strength and courage of similarly infected people, she would have garnered the confidence to talk to her partner, to insist that he is tested.