AVERT - AIDS advocacy & AZT

AIDS Advocacy

I had learnt a great deal from the projects and more generally from our visits to high prevalence areas. It made me even more convinced of the need for AVERT to speak out about the suffering that was taking place, and the need for ongoing action.

AVERT's advocacy work was never very formalised. It effectively consisted of Pete and myself, and other people at AVERT, speaking out about those things which we considered needed to be improved. Although some of the issues we spoke about changed, other such as the prevention of mother to child transmission were an important issue for many years. Sometimes there were new things to talk about such as the provision, or rather the lack of provision of antiretrovirals for HIV positive people in developing countries.

Working with the media

Our advocacy work was helped by the fact that we had considerable contact with journalists who used avert.org. Indeed AVERT, as considered by many people as a major source of information on HIV/AIDS. Journalists would often ring us before writing an article, or doing a broadcast, to get further information and/or to get a quote.

An example of this was the BBC asking us in 2007 for our view on "home sampling" kits being made available in the UK. Then a few days later they asked us what questions it might be helpful to include in an interview they were about to do with the Global AIDS Coordinator. In 2008 AVERT was either quoted in, or provided information for articles in a rang of media as diverse as the BBC, the New York Times, the Metro and the Malaysia Star.

Conferences

Conferences, as long as they weren't too expensive to attend, were an important tool for AVERT's advocacy work, as well as important for our learning.

Towards South Africa 2004 Conference: A Decade of Freedom: The Decade Ahead

This conference was held in London in late 2003 and was held to mark the tenth anniversary of Nelson Mandela becoming president of South Africa. The aim of the conference was:

"to review developments in South Africa since 1994 and to discuss how we can together meet the challenges for the period after 2004"

For me one of the attractions of the conference was that it was going to be attended by many South African government ministers. This was to include the Health Minister Dt Manto Tshabalala-Msimang about whom there was such controversy. She wanted to promote the use of beetroot and garlic for improved nutrition for HIV positive people. THis was instead of providing antiretroviral treatment. Her views together with those of Thabo Mbeki, who didn't believe that HIV caused AIDS, were a major obstacle to the wider provision of antiretrovirals.

The conference started on the Friday evening. The topics that were going to be discussed at the conference were apparently not going to include AIDS. So the next day I wore my Raphael Centre  T-shirt that had a large red ribbon on the back. We came to a plenary and they suddenly said that they would take questions from the floor. I quickly went to one of the three microphones where I was the first in line.

The chair said that the person at the microphone to the left could ask their question. Then the person to the right. When he said that the second person to the left coudl ask their question people began pointing at me. Then suddenly I realised that I was the only person standing as everyone else at a microphone had sat down.

So I asked my question, something about what the benefit of ending apartheid we going to be. If possibly two million people, mainly poor and black, were going to die from AIDS because the government refused to provide antiretrovirals. As the conference delegates applauded I went and sat down. I can't remember what the answer was, but I had put AIDS on the conference agenda.

The International AIDS Conference Toronto 2006

Pete and I had planned to go to the International AIDS conference in Thailand in 2004. But we had to cancel because our son was ill. He then died in 2006 just three weeks before the Toronto conference. This time we decided we would go because we thought that is what he would have wanted. But  I knew it was going to be difficult.

It was difficult even getting to the conference, as the day we were to fly out was the day that a terrorist plot was uncovered and many planes were grounded. Finally we were able to get on the plane but we weren't allowed any hand luggage at all. So we arrived at Toronto airport to the sight of all these doctors and scientists, taking their broken laptops from their suitcases and wondering how they were going to make their presentations. Later we were to find out that our flight was one of those that had been targeted.

One contribution that AVERT made to the conference was that the first day the conference newspaper was filled with photographs provided by AVERT. It was lovely to see, amongst other pictures, those of the children at the Raphael Centre. And of course it publicised AVERT and also avert.org.

A protest against the closure of the only safe injecting site in Canada

A protest against the closure of the only safe injecting site in Canada

We took some time off from the conference to see the protests taking place outside the conference building. We also joined a march taking place to protest against the proposed closure of the only safe injecting site in Vancouver.

We also one lunchtime went and looked at a display of some of the panels from the AIDS quilt. There weren't many people looking at them. They seemed like the relic of a bygone era, but then I suppose they were. Panels in memory of young men who had died reminded me of Jason. At every conference session that I went to there seemed to be people talking about the death of young men. What they didn't seem to be talking about though was the prevention of mother to child transmission.

It was the last but one day, and again at a plenary they suddenly allowed questions. So I asked why there had been so little mention of preventing mother to child transmission of HIV (PMTCT). The next day there were reports back from the different strands of the conference. Several people mentioned the lack of discussion and said that there should have been more. I hoped that when the conference delegates went back to their own countries that they would remember these comments.

The Stop AIDS in Children Campaign

I cetainly remembered the comments when I was back at AVERT's office. With three hundred thousand children still dying of AIDS each year, we decided that AVERT would have a "Stop AIDS in Children" campaign. Actually "campaign" was rather a grand word for it. But launched in the summer of 2007 it did have a specific aim. The aim was by 2010 to halve the number of children dying from AIDS each year.

We focused on the need for the improvement of prevention of mother to child transmission services in countries highly affected by AIDS. It was actually run like most of AVERT's advocacy work. This meant that we highlighted the issue in every way that we could. Whether it was mentioning it at any HIV/AIDS meeting we went to, or putting the campaign logo on every page of the website. We also talked about it with every journalist who rang us for information.

We also decided to make a video. We put the video on YouTube and it became quite a success. The last time I looked nearly 100,000 people had watched it. I still get slightly "choked up" whenever I hear the words on the video.

"no mother should have to watch her child die"

Whether the child dies from cancer or AIDS the pain is still the same.

The campaign ended after a couple of years when most HIV/AIDS organisations seemed to be talking about the subject. There seemed no longer a need to highlight the issue. Of course sufficient action on the subject didn't necessarily follow. To this day there are still too many children being born HIV positive. Even with the drugs the outlook for many of them is still not good.

AZT and PMTCT at Manguzi hospital

The campaign was to develop to include action in South Africa. In May 2007 Colin Pfaff asked AVERT if we would provide money for a supply of the drug AZT. It was needed for the HIV positive pregnant women who did not qualify for antiretrovirals for their own health. We knew from previous discussions about the home based care service that the HIV infection rate in pregnant women was above 30%. The women needed both AZT and nevaripine to prevent HIV being passed to their baby. But only nevarapine was available at the hopsital. The South African government had promised the rural hospitals in January 2007 that they would provide the drug in January but it had still not arrived.

Our initial reaction was to say that we wouldn't pay for AZT. This was because AVERT's policy was that although we would sometimes provide money for other drugs, we wouldn't provide antiretrovirals as they were needed for a person's lifetime. This wasn't a commitment that we could make. Colin however was persistent, writing again and explaining how:

"if we could get a private supply of drugs and just start ourselves, it would shame the government into action as they would no longer be able to hide behind logistics as an excuse. It is thus in a way a lobbying tactic, but also real action as what we are offering our patients at present is not ethical"

He also sent as an example of the action that was being taken by the doctors, a letter that had been sent from five hospitals to the provincial head of department. It explained that the doctors felt that:

"many babies are getting infected unnecessarily ... we cannot sit in silence any longer"

AVERT agrees to pay for AZT

At the end of May 2007 AVERT agreed to provide some money for AZT. This was on the basis that women only needed it for two or three months at a time, and it was not a lifelong committment. It took a while to sort out the practicialities and even to estimate the quantity of drugs needed. But by July it was agreed that we would provide funding for six months or more. Or until AZT became available from the South African government. We agreed to send the money at two monthly intervals. The money was sent to an old Manguzi Mission hospital bank account. This was so that in the event of any difficulties Tholulwazi Uzivikele wouldn't be implicated. By the end of July the first money had been sent and by early August the first AZT had been provided. There was optimism that the government would be supply ing the drug "within a month or so". The Treatment Action Campaign had threatened to take the South African government to court. And the government finally signed the new policy on dual therapy for PMTCT.

In October 2007 whilst Pete and I were visiting Manguzi, Colin told us that the remaining supplies of the drug had rapidly been used up. This was because there had been an increase in the number of HIV positive pregnant women. He urgently need a further two month instalment of money to buy some more supplies. Several transfers of money had been done just before Pete and I left England. Also several other AVERT trustees were away from Southern England, so it was going to be very difficult to get a money transfer urgently done.

The fake AIDS cure on the pharmacy shelves

The fake AIDS cure on the pharmacy shelves

Then I thought of AVERT's credit card which I had with me. So we went to a local pharmacy and I managed to persuade the credit card company, that they really could authorise a purchase of £2,000 worth of an AIDS drug, being bought in a remote part of rural South Africa! Whilst waiting for various phone calls, I noticed on the shelves of the pharmacy, a local AIDS "cure" that as far as I knew had absolutely no effect at all. AZT would definitely be better!

By November 2007 the initial six month funding for AZT had been spent, but there was still no sign of a government supply of AZT. I advised Colin that he would need to apply to AVERT's committee for further money. I was getting slightly concerned about the costs to AVERT, but it still seemed so very important. I also needed to ask further questions about the legality of what was being done. During one visit another member of the hospital staff had said that their understanding of the situation was that AVERT was funding an illegal activity. But Colin was able to confirm that the provision of AZT was not illegal in South Africa. It was though still against the policy of the South African Department of Health. As a result Colin could in theory be disciplined for what he was doing. AVERT agreed to provide more money.

By December 2007 another hospital in the district was also providing AZT as part of PMTCT. But Colin's area manager had written demanding details of what he was doing.

Colin Pfaff is charged with misconduct

On January 25th the Department of Health announced that a new PMTCT protocol would be released which would include dual therapy. But then suddenly at the end of the month I heard that Colin had been charged with misconduct as it was claimed that he had:

"wilfully and unlawfully without prior permission of your superiors rolled out PMTCT dual therapy to the pregnany mothers and newborns"

Colin also said to me that:

"if you wanted to get attention and move the government /advocacy for PMTCT etc. you have certainly done that"

but were my actions and the funding from AVERT going to result in Colin loosing his job?

However, there then started to be action by other healthcare workers in support of Colin. The news also reached a reporter at the New York Times. They rang me asking for confirmation that AVERT was the charity involvede. She wanted to publish a story about Colin, AVERT and PMTCT. However, COlin asked me not to agree, believing that the matter needed to be resolved by people in South Africa. People in other countries being seen to be involved might only make matters worse.

There then followed one of the largest campaigns by health care workers ever seen in SOuth Africa. The Southern African HIV Clinicians Society, the Rural Doctors Association and the Treatment Action Campaign (TAC) amongst others, all called for the reinstatement of Colin. An online petition was signed by over 1,000 people within a week. There was increasing coverage in the medica, the Department of Health set a date of April 1st for dual therapy to start in KZN, and we were liaising with the AIDS Law Project and TAC about the action to be taken in defence of Colin.

The dropping of charges and afterwards

Then suddenly the charges against Colin were withdrawn. AZT provided by the South African government arrived at Manguzi and other rural hospitals. The New York Times went ahead and published its article. It was said afterwards in the South African Medical Journal that:

"Pfaff's actions probably saved a large number of infant lives"

and among the many comments made to AVERT was that Francois Ventre, the President of the Outhern African HIV Clinicians Society said:

"You guys are fantastic! And the doctors you funded are very, very brave"

and Colin said:

"Thank you again so much for all your support around PMTCT. I am not sure you realise how much of a stir here this has caused, with a lot of media attention, and generally renewed energy of health care workers to focus on PMTCT."

But in July 2008 Colin told me that he was leaving South Africa.

Changing Times

It was not just the Sisonke project that had to ensure that it was changing with the times, but many other HIV projects as well. South Africa had by 2011 nearly reached universal access to antiretrovirals. It was still unclear what this meant in some of the rural areas. But there was clearly and thankfully fewer people dying. There was therefore less of a need for home based care. With fewer deaths there was no longer an increasing number of orphans. Sadly many of the HIV positive orphans had died.

Very large amounts of money was now coming from the Americans through the PEPFAR programmes. Many of their programmes were now far more established. Having received a very large legacy AVERT funded some projects in other parts of Southern Africa. But apart from one project in Malawi they were useful but not very long lasting.

AVERT 2009 - 2011

In 2009 there were more than 20 million visits to the avert.org. By 2011 the site was receiving about 700,000 visitors a week, and about 30 million visitors a year.

It is very difficult to even estimate how many people have visited the site over the years. But it is likely to be in excess of 70 million. If even a fraction of these people have gained something useful from the site, then this is a great deal of education that we have provided. Put together with all the other projects we have done, some of which have also helped more directly with treatment and care, this adds up to a considerable amount of HIV/AIDS education treatment and care. This is exactly what we set out to provide twenty five years ago when  AVERT was started in the attic.

Additional Notes

In this history of AVERT it has only been possible to highlight some of the HIV and AIDS work done by AVERT. I don't also wish to suggest that all of the work that we did was extremely successful. There was the occassional project grant that didn't work out quite as we hoped. There was the occassional publication that wasn't as popular as some of the others. If anyone would like any further information or clarification of anything written in this history, then please do write to me at a.kanabus@btinternet.com.

This account has also focused on the HIV/AIDS work carried out by AVERT, as it was to do the HIV/AIDS work that with Pete I started AVERT and worked as the volunteer chief executive for 25 years. There is however much more to a charity like AVERT than its charitable activities. There is administration, general and financial management as well as fundraising, all of which I have only briefly mentioned . I would also like to thank the money other people who have been involved in AVERT and without whom the charity wouldn't have achieved so much.

I wish AVERT well for the next twenty five years.

Epilogue

On World AIDS Day, December Ist 2009, I had been diagnosed with cancer of the mouth, the same cancer that had killed ny son in 2006. During 2010 I worked for AVERT as often as I could in between periods away for operations and radiotherapy.

returning to AVERT full time in 2011 I realised that the time had come to move on, and so I retired from AVERT in the summer of 2011 after 25 years fo AVERTing HIV and AIDS. I did not however retire from HIV/AIDS work entirely as working for another small charity GHE, I started a website on TB, https://tbfacts.org which amongst other things has involved writing about the link between HIV and TB.

Annabel Kanabus 2012

2020 Update

As I have explained earlier, I wrote this account of AVERT in 2013. But I didn't do anything with it, until sitting at home in social isolation during the Coranavirus pandemic, I decided to put this history online. If you have read this far, then thank you.

We tend to forgot now how during the AIDS epidemic some hospitals were overflowing with patients. In the same way that some hospitals are now overflowing with COPID-19 patients. In due course people will be writing histories of the COPID-19 epidemic, in the same way that we now write about the history of AIDS.

Annabel Kanabus April 2020

Page updating

This page was last updated in April 2020

Author Annabel Kanabus

Would you like to send us a comment about this page?

You might like to read more about: