Stop AIDS in Children | PMTCT

The Stop AIDS in Children Campaign

I certainly remembered the comments from the AIDS conference when I was back at AVERT’s office, and 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, which was by 2010 to halve the number of children dying from AIDS each year.1

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

We also decided to make a video but we got off to a slightly faltering start. We said to our designer what sort of video could you make, and he said how do you want to put the message across, and we said that depends on what you can do! So one afternoon I sat down with the writers on the web team and we wrote down all the important points we wanted to get across, and that became the script. And then the designer made the video.

The Stop AIDS in Children video

We put the video on YouTube and it became quite a success, and 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, and there was no longer a need to highlight the issue. Of course sufficient action on the subject didn’t necessarily follow, and to this day there are still too many children being born HIV positive, and 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, when in May 2007 Colin Pfaff asked AVERT if we would provide money for a supply of the drug AZT that 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 antenatal women was above 30% and the women needed both AZT and nevaripine to prevent HIV being passed to their baby, but only nevirapine was available at the hospital. 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.2

Our initial reaction was to say that we wouldn't pay for AZT, as AVERT’s policy was that although we sometimes provided money for other drugs, we wouldn’t provide antiretrovirals as they were needed for a person’s lifetime, and that wasn’t a commitment that we could make. 3Colin however was persistent, writing again and explaining how:4

"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, explaining that the doctors felt that:5

"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, on the basis that women only needed it for two or three months at a time, and it was not a lifelong commitment.6 It took a while to sort out the practicalities and to even estimate the quantities of drugs needed, but by July it was agreed that we would provide funding for six months or until AZT became available from the South African government, and that we would send the money at two monthly intervals.7 8

The money was sent to an old Manguzi Mission hospital bank account so that in the event of any difficulties Tholulwazi Uzivikele wouldn’t be implicated.9 By the end of July the first money had been sent and by early August the first AZT had been provided, and there was optimism that the government would be supplying the drug "within a month or so".10 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.11

In October 2007 whilst Pete and I were visiting Manguzi, Colin told us that the remaining supplies of the drug had been rapidly used up, as there had been an increase in the number of HIV positive pregnant women, and he urgently needed 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, and as several other AVERT trustees were also away from Southern England, it was going to be very difficult to get a money transfer urgently done.

The fake AIDS cure Ubhejane

The fake AIDS cure Ubhejane on sale in a South African pharmacy

Then I thought of AVERT’s credit card which I had with me. So we 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!12 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, and I advised Colin that he would need to apply to AVERT’s committee for further money.13 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 our 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, but it was still against the policy of the South African Department of Health, and as a result he could in theory be disciplined for what he was doing.14 AVERT agreed to provide more money.15

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.16

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.17 But then suddenly at the end of the month I heard that Colin that had been charged with misconduct as it was claimed that he had:18

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

Colin also said to me that:19

"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.20 21 The news also reached a reporter at the New York Times, who rang me asking for confirmation that AVERT was the charity involved. 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, and that 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, with the Southern African HIV Clinicians Society, the Rural Doctors Association and the Treatment Action Campaign amongst others, all calling for the reinstatement of Colin.22 An online petition was signed by over 1,000 people within a week.23 There was increasing coverage in the media, 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.24

The dropping of charges and afterwards

Then suddenly the charges against Colin were withdrawn.25 26 AZT provided by the South African government arrived at Manguzi and other rural hospitals, and the New York Times went ahead and published its article.27 It was said afterwards in the South African Medical Journal that:28

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

and amongst the many comments made to AVERT was:

Francois Venter, the President of the Southern African HIV Clinicians Society saying:29

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

and Colin saying:30

"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."

However in July 2008 Colin told me that he was leaving Manguzi.31

AVERT.org 2006 to 2008

Until 2006 the emphasis with the site had been on the writing of new pages, or adding additional sections to existing pages. Once new pages were written they were put up on the site, people came and read them and the accesses increased. However, in late 2006 I noticed that with some quite good pages the accesses seemed to be going down rather than up, and leading up to World AIDS Day the accesses had been about the same for 2006 as compared to 2005.32

Rob Noble working on AVERT.org

Rob Noble working on AVERT.org

So I sat down with Rob Noble, our senior content writer, and together we investigated what had been happening with the site. We developed our knowledge of Search Engine Optimisation (SEO), and we then devised a set of “rules” for how SEO would be implemented on the site, as well as developing a system of grading and then regularly reviewing pages.33 These systems did take a great deal of effort to both develop and implement, but it was certainly worthwhile, and by the autumn of 2007 the number of accesses to the site were about 40% up on the same time the previous year.34

This work was greatly helped by the fact that Google had recently made available for free, its Google Analytics program. Although unfortunately this happened just a few months after AVERT had purchased a rather expensive and unwieldly web statistics program to use on AVERT.org.

In 2007 we added on to the site about ten pages that we had got translated into Spanish because at that time there was very little detailed HIV/AIDS information available in other languages.35 We also improved the ever popular quizzes, and then in 2008 we developed an online game.36 The game was designed to not only be enjoyable but also educational, through requiring the player to answer questions about HIV/AIDS.

During 2007 AVERT.org had become the most popular HIV/AIDS website in the world, and indeed was among the 20,000 most popular sites on the web worldwide across all topics and countries.37 During 2008 the site was visited by more than 10 million people, and in December 2008, during the week of World AIDS Day, for the first time we had over one million pages on the site being viewed in just one week.38 39

Another major gift

AVERT had received a number of legacies, over the years, all of which were extremely helpful in helping to fund AVERT’s work, and it meant that less time, and indeed less money needed to be spent on fundraising. Then at the end of 2008 we were notified that we were to receive a large legacy in the region of £400,000.40

Children in Uganda performing a play about antiretroviral medication

Children in Uganda performing a play about antiretroviral medication

This could hardly have come at a better time as the value of AVERT’s endowment had decreased considerably due to the decline in the stock market as a result of the financial crisis. There were no conditions attached to the legacy, so AVERT could spend it entirely as we wished. The trustees considered the use of the legacy extremely carefully, and we decided that in view of the still dire state of the HIV/AIDS epidemic, we should not in any way use it to increase our reserves, but that we should if anything use it to further increase the work we did.

So over the next two years we used the money to firstly ensure that we could continue with all our current charitable activity, including the website AVERT.org, and our two major South African projects Tholulwazi Uzivikele and Sisonke. We had also already started to fund a number of smaller Southern African projects outside of South Africa, and this was a program which we were now able to continue.

Other Southern African projects

A female condom demonstration in Zambia

A female condom demonstration in Zambia

There were about ten of these small projects over the years, including the Thandizani, SAPEP and Wamata projects in Zambia, Namulaba and St. Francis in Uganda, and Umunthu in Malawi. With the exception of Umunthu these projects lasted for a couple of years and then ended for a variety of reasons, although mostly the reasons were connected with PEPFAR.41 42

There were rapidly changing situations occurring with many projects and organisations around this time, and one example was that we provided one organisation with money for the treatment of opportunistic infections in children, which was no longer needed once money for antiretrovirals became available through PEPFAR.

Another project turned down money they had already agreed to accept from AVERT for certain HIV/AIDS work, because they were reorganising some of the work they were doing in order that they could receive more money from PEPFAR. Finally with another organisation it became apparent that the HIV/AIDS work was a smaller proportion of the work they did than we had expected, and as an HIV/AIDS organisation we had to ensure that with any work we funded, that a very high proportion of it went directly to either HIV prevention, treatment and care, or research.

The Sisonke Project

Sisonke project worker Des with one of the self help groups which met in a township shack

Sisonke project worker Des with one of the self help groups which met in a township shack

Sisonke, about which I have written earlier regarding the start of the project, had as its main focus helping groups of people in the villages to respond to the impact that HIV/AIDS was having on their communities. After a new Sisonke worker, Desire Nokele, was appointed in 2006 the work with the groups rapidly developed.

Des was one of the original clients of the Raphael Centre which was also helped by AVERT. She then became a volunteer helping others, and then a part time worker. It is a testament to her character and determination, that she has then made such a success of becoming the full time worker for the Sisonke project. Des helped the groups to put their ideas into practice, through their own initiative as well as through accessing local sources of support.

Early on the work of the groups included providing home based care, looking after the orphans and other children affected by AIDS, and growing vegetables to provide better food for people with AIDS.43 Later on the groups helped people to access treatment, and they helped with adherence. They also helped people to obtain government grants, and this included a number of workshops being held at the DSR offices, to help provide education about the various social security grants that could be obtained, particularly for children infected with and affected by HIV/AIDS.

Feeding the AIDS orphans as part of the Sisonke project

Feeding the AIDS orphans as part of the Sisonke project

With regard to grants from Sisonke, a number of the groups wanted grants for large cooking pots and stoves, so that everyone could contribute when food was being prepared for the orphans. By the summer of 2008 Des was working with thirteen different groups and in addition to the cookery items, other items purchased with Sisonke grant money included water tanks, cement and various items of garden equipment.44

Occasionally the group activity was a money making activity, with the money then being used to help provide care to people with HIV/AIDS, although the opportunities for money making activities were generally very limited. However, one example was providing a local hospice with a sewing machine so that they could make traditional dresses for which there was a demand in the community.45 Later on there were to be between 16 and 18 groups being supported, the number fluctuating according to the need in different places, as well as the willingness of the people in the groups to take action themselves on their various activities.46

The impact of the project was considerable, with an estimated 1,800 people being reached directly through the groups in 2009. Taking into account the indirect impact that occurred by households influencing each other, meant that the number indirectly reached was possibly as many as 84,000 each year.47

Home Based Care

Annabel, Des, & Tony with the community home based carers who had just received their training certificates

Annabel, Des, & Tony with the community home based carers who had just received their training certificates

As the needs of the groups started to change, some of the money that was to have been spent on grants was instead spent on providing training in home based care. By 2009 Sisonke had successfully provided home based care (HBC) training for 22 selected group members. This training was provided on the basis that these people would then provide training and share their experience with their individual support groups. It was estimated that as a result at least 141 people had received guidance on HBC training, and that these group members had then between them reached between 1120 and 2820 people.

The Gogos

Some of the gogos having a meeting

Some of the gogos having a meeting

It had become apparent that elderly people and particularly grannies (gogos in isiXhosa), were starting to play a more prominent role in some of the groups, and in 2008 some 35 of them from 6 different communities had decided to form their own group which they called the gogogetters. Apparently on an earlier visit in 2008 I had made some comments about the needs of the elderly and this had influenced what had subsequently happened.48

As the needs of the groups changed with the coming of antiretrovirals, so the gogos, and gogogetters played an increasingly important role in Sisonke, and on a memorable visit Pete and I met them as a group. I talked to them about the difficulties I had faced when my son had died, and I was humbled by their response as they told me how some of them had lost several children, and in some cases had had to cope with the death of all their children, and had been left to bring up their grandchildren on very limited means. In 2010 Des said to us:49

"I want to thank AVERT for the amazing partnership around Sisonke. We continue to look forward to communities and groups taking the next step. I would like to repeat in appreciation an African proverb. ‘If you want to go fast, go alone. If you want to go far, go together.’ DSR is going far with Sisonke. Thank you for your part!"

Changing Times

It was not just the Sisonke project that had to ensure that it was changing with the times, but many other Southern African HIV projects as well. South Africa had by 2011 nearly reached universal access to antiretrovirals, and although it was still unclear what this meant in some of the rural areas, there was clearly and thankfully fewer people dying, and therefore less of a need for home based care. With fewer deaths there was no longer an increasing number of orphans, and some of the orphans who had been born HIV positive had died. There was still very large amounts of money coming from the Americans through the PEPFAR programmes, and many of the programmes were now far more established. However, there were still many issues to contend with such as the lack of second line antiretrovirals, the continuing issue of the TB and HIV interaction, and the children still being born with HIV.

AVERT.org 2009 - 2011

In 2009 I was still further developing AVERT.org and we made a major effort to include more videos on the site. By the end of the year there were more than 3,000 views of videos on the site taking place each week.50 51

AVERT'S Universal Access video

For World AIDS Day 2009, we made a second video ourselves to go on the site, this time on the need not only for universal access to antiretrovirals, but also universal access to HIV prevention and more generally to HIV care. The Universal Access video has since been watched by more than 75,000 people.

Our final video was to mark the World Cup in South Africa in 2010, and to remind people that behind the "glitz" of the World Cup there is another South Africa.

In 2009 there were more than 20 million visits to the site, an increase of more than 50% over the previous year, and the site continued to be the most popular HIV/AIDS website in the world.52 We also had a very successful World AIDS Day in 2009, with the success continuing into 2010 with the site regularly having 500,000 visits made to it each week, and over one million page views.53 By 2011 the site was receiving about 700,000 visitors a week, and about 30 million visitors a year. Between them the visitors were regularly looking at more than a million and a quarter pages a week and the site continued to be by far the most popular HIV/AIDS website in the world.

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.54 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 more directly helped with treatment and care, this adds up to a considerable amount of HIV/AIDS education, treatment and care, which is exactly what we set out to provide twenty five years ago when we started in the attic.

Epilogue

On World AIDS Day, December 1st 2009, I had been diagnosed with cancer of the mouth, the same cancer that had killed my 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 resigned from AVERT in the summer of 2011 after 25 years of AVERTing HIV and AIDS, and after one last visit to the Sisonke project in South Africa. I did not however give up HIV/AIDS work entirely, as working for another small charity GHE, I started a website on TB, www.tbfacts.org, which amongst other things has involved writing about the link between TB and HIV.

Annabel Kanabus December 2012

Additional Notes

In this short history 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 occasional project grant that didn’t work out quite as we hoped, or the publication that wasn’t as popular as some of the others. If anyone would like any further information, clarification of anything written in this history, or you would like to suggest something to be added, 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 many 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.

References

  1. AVERT Annual Report and Accounts 2007 - 2008
  2. Email from Colin Pfaff to Annabel Kanabus 10th May 2007
  3. Email from Annabel Kanabus to Colin Pfaff 16th May 2007
  4. Email from Colin Pfaff to Annabel Kanabus 23rd May 2007
  5. Letter from five hospitals to the District Manager, Umkhanyakude District 4th May 2007
  6. Email from Colin Pfaff to Annabel Kanabus 30th May 2007
  7. Email from Colin Pfaff to Annabel Kanabus 1st July 2007
  8. Email from Colin Pfaff to Annabel Kanabus 12th July 2007
  9. Email from Annabel Kanabus to Colin Pfaff 13th July 2007
  10. Email from Colin Pfaff to Annabel Kanabus 28th August 2007
  11. Email from Colin Pfaff to Annabel Kanabus 28th August 2007
  12. PMTCT Manguzi Finance Timesheet
  13. Email from Annabel Kanabus to Colin Pfaff 7th November 2007
  14. Questions to Colin and answers, November 2007
  15. Email from Annabel Kanabus to Colin Pfaff 30th November 2007
  16. Email from Colin Pfaff to Annabel Kanabus 14th December 2007
  17. Statement on disciplinary action against Dr Colin Pfaff Treatment Action Campaign 18th February 2008
  18. Email from Colin Pfaff to Annabel Kanabus 31st January 2008
  19. Email from Colin Pfaff to Annabel Kanabus 12th February 2008
  20. Colleagues praise AIDS doctor, Sunday Tribune 17th February 2008
  21. Clinicians support South African doctor in dispute over providing AIDS therapy for pregnant women, Foxnews.com 18th February 2008
  22. HIV/AIDS Clinicians Society supports Dr Colin Pfaff 18th February 2008
  23. Support for Dr Colin Pfaff
  24. Email from Colin Pfaff to Annabel Kanabus 20th February 2008
  25. Charges against Dr Colin Pfaff dropped
  26. Disciplinary action withdrawn against Dr Colin Pfaff, Treatment Action Campaign 23rd February 2008
  27. Dugger, C Rift over AIDS treatment lingers in South Africa 9th March 2008
  28. Richter, M Does the power of overripe tomatoes and dusty photos equal that of the bomb? July 2008
  29. Email from Francois Venter to Annabel Kanabus 10th July 2008
  30. AVERT Annual Report and Accounts 2007/8
  31. Email from Colin Pfaff to Annabel Kanabus 18th July 2008
  32. Web Pages 2005 - 2007
  33. Charitable Expenditure Website AVERT.org October 2007
  34. Web Pages 2005 - 2007
  35. AVERT Annual Report and Accounts 2007 - 2008
  36. AVERT Annual Report and Accounts 2008 - 2009
  37. AVERT Annual Report and Accounts 2007 - 2008
  38. AVERT Annual Report and Accounts 2008 - 2009
  39. Web Pages 2007 - 2009
  40. AVERT Annual Report and Accounts 2008 - 9
  41. AVERT Annual Report and Accounts 2007 - 8
  42. AVERT Annual Report and Accounts 2008 - 9
  43. AVERT Annual Review 2005
  44. DSR Sisonke Community Action June 2008
  45. Email from Tony Schnell to Annabel Kanabus 25th October 2007
  46. Department of Social Responsibility Sisonke Community Action 2009
  47. Sisonke Project 2010
  48. Sisonke Community Action Report October – December 2008
  49. Sisonke Community Action Report January – March 2010
  50. Other Charitable Expenditure May 2009
  51. Charitable expenditure September 2009
  52. AVERT Annual Report and Accounts 2009 - 10
  53. Charitable activities January 2010
  54. Google analytic statistics 2007 to 2011

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