IN

“Women, HIV and a fairy tale: 8 requests for the G8...”

Presentation by Alice Welbourn, International Community of Women living with HIV/AIDS

Thank you very much to Neil Gerrard, coordinator of APPGA, and his colleagues, for inviting me here to speak today. It is always a great pleasure to be welcomed here to the House of Commons to events hosted by APPGA and others.

Today I would like to take the opportunity to present eight requests from our members to the UK government as it takes over the presidency of the G8, and also to remind ourselves of a fairy tale.

1)     HIV and Development 

Back in 1996, Jeff O’Malley, founding director of the International HIV/AIDS Alliance, said:

This statement is all the more true now than it was then.  The figures alone tell us what is going on in the world in relation to HIV.

If we look, for instance, at the horrendous death figures of the recent Indian Ocean tsunami and compare them with the figures for HIV and AIDS for the same period, the numbers speak for themselves. 

So as we call on the G8 leaders to tackle poverty reduction, good governance, trade justice, social equity, writing off debts and funding, not only do we know that all these are needed to face the challenge of HIV and AIDS. We also realise that unless there is an effective global response to HIV and AIDS, the effects of all these other strategies will be in vain.

Thus our first request to the UK Government is that it will encourage its G8 partners to include an assessment of all activities that they undertake, both in their own countries and globally, in relation to the effects of those activities on HIV and AIDS around the world. We also request that they hold themselves accountable to the influences of those actions on the global spread of HIV.

2)     Gender

In ICW we recognise that gender is not just about women, but also about men who have sex with men, or straight men, about transgendered people, also and about the attitudes of us all and to us all in societies around the world. The first question which gets asked in most societies when a baby is born is “is it a boy or a girl?” and the answer given to that one question normally shapes the rest of our lives.

DFID has already been doing great work on establishing the clear links between gender and HIV around the world in its policy statements.

However, many of you will have heard of the recent letter sent by Senator Tom Coburn to President George Bush, in which he called into question the wisdom of US government funding of ICW because we do not share his rigidly pro-life, anti-sex position. Unfortunately, the Bush regime is currently promoting pre-marriage abstinence and marital fidelity as the only two messages needed to prevent HIV, despite clear and compelling international evidence over the years, from our members across 140 countries, as well as from many other organisations, that such simplistic approaches do not adequately address the complex gender inequalities which govern our lives. For instance, many women and girls in many countries of the world have no choice over when they have sex, with whom they have sex or whether or not the sex is with a condom. Abstinence and marital fidelity may work for some, but for the great majority of the world – including the USA - people’s own experiences are far more complex.

So our second request to the UK Government is that it works with its G8 partners to ensure that HIV prevention work reflects the lived realities of our members and not the views of repressive and regressive ideologies.

 3)     GIPA

Often UN or Government officials do not know what GIPA (the Greater Involvement of People living with HIV/AIDS) stands for, or what such a concept means, despite the fact that participation in society is upheld as a right of all citizens in the Universal Declaration of Human Rights.

Even those organisations which do know what GIPA is often sadly just pay lip-service to the principle, rather than really working out what it means and applying it to the way in which their own organisations work.

Lynne Freedman, an academic from Columbia University, was recently quoted by Mary Robinson, our patron, in a speech:

In a recent bid to encourage agencies to address GIPA more effectively in their own work, ICW produced a “participation tree”, which highlights what “GIPA” means – i.e. involvement of positive women’s networks in the decision-making processes which affect our lives. It also charts and assesses different styles of working, highlighting the advantages of more participatory means of engagement. This means that it is not just positive women’s groups that need capacity development: it means that it is also the role and duty of UN and government staff to learn about and engage in more participatory methods of working than those to which they have been accustomed  (see www.icw.org/publications). Such a challenge to the status quo and to established ways of doing business can be seen as highly threatening. Yet the extreme nature of this pandemic demands no less. It requires us all to explore and develop new ways of understanding, a recognition that many people who have not undergone formal processes of education still have much in the way of insights and experiences to share with the rest of us, if only we learnt properly how to listen to what they have to say. The work of institutions such as the International Institute for Environment  and Development here in London, and the Institute of Development Studies in Sussex, together with the ground-breaking work of their colleagues around the world, has paved the way in all kinds of participatory approaches to other sectors of development. The time for institutions involved in HIV work to embrace these new forms of engagement also is long overdue.

Therefore our third request to the UK government is to uphold both the principle and the practice of GIPA and to encourage its G8 partners to do likewise.

4)     Universal Treatment Access

We all warmly support and welcome the bold WHO 3x5 initiative, to get 3 million people onto treatment by the end of 2005. We also warmly welcome   the finance ministers’ communiqué which confirms that universal treatment access by 2010 will be on the Gleneagles agenda.

But as our members know only too well….

There is a plethora of barriers identified by our members which either do or are likely to hamper treatment access for many rural women especially. The current WHO strategy is to bring drugs to rural public health centre level, which is admirable: but it is what happens beyond the health centre door, within the community, which concerns us.

For instance, if a woman fears that attending a local clinic for anti-retroviral drugs will result in disclosure of her status, and if she fears that information will lead to ostracism not only of herself but of her children, then she is likely to forgo being tested or seeking treatment, for the sake of her family. Often, the hardest place for a woman to disclose her status is in her own neighbourhood, where she lives. This is because this is the place where she and her family members can least afford to be excluded from day to day contact  with family, neighbours and friends.

Thus we believe that it is critical that there should be on-going funding, not only for treatment drugs but also for good community programmes, which challenge stigma and prejudice and create society-wide respect, support for and solidarity with HIV positive people.

This is why it is also critical to develop a monitoring system which is tracking what is really going on in terms of treatment access. Figures released in the 3x5 December 2004 report suggested a strong take-up of ARVs amongst women in urban public health centres. However, it is not yet clear what these figures actually mean. Where are the men? Are they just accessing private health centres (which can provide more confidentiality), whose figures are not monitored? Are they at home in denial, getting more sick and thereby placing an extra burden of care on their wives? Have they told their wives to go and get the drugs on their behalf? Are their wives sharing their drugs with their partners or their children, out of a sense of guilt that they are accessing treatment and other family members are not? We need to know the true patterns of drug access and non-access, so gender and age-related data are a critical first step in helping us to understand what is really going on.

Moreover, drugs access alone is not going to do away with stigma towards people with HIV, if other long-term conditions are anything to go by. In recent research which ICW has conducted with WHO, UNAIDS and Liverpool School gender and health unit, it has emerged clearly that later diagnosis and treatment of several conditions, such as TB, malaria, leprosy and others, are seen in women compared with men.  Moreover, women who have had leprosy have experienced similar restrictive attitudes towards their sexual and reproductive rights, including becoming mothers, as those experienced by HIV positive women:

Thus our fourth request to the UK Government is to promote with the G8 a holistic approach to treatment access, which acknowledges fully the social and economic, as well as the technical dimensions of life-long adherence and compliance.

5)     Health workers are human too

There is clear and widespread evidence that negative attitudes of health workers towards HIV positive people, especially women, are a significant barrier to care and treatment access.  At the same time, many of our members are themselves members of a health profession – doctors, nurses, pharmacists, lab technicians and so on. One Kenyan study describes how female health centre staff did not take advantage of post-exposure prophylaxis after needlestick or other injuries because the women concerned saw themselves at risk of HIV anyway every night in their marriage beds. Our members' stories echo those of the Kenyan health staff, and this is entirely understandable, given that most health workers belong to the communities in which they work.

Most health workers are very scared that if they are HIV positive they will lose their jobs, their income, their security, their standing in their communities. They are often entirely over-stretched, under-resourced and female. No wonder that they treat HIV positive women badly, since they represent to them often what they most fear about themselves. Yet, as our members have shown repeatedly, HIV positive people, if properly supported, have so much to offer in terms of motivation and willingness to support others.

Moreover, we all know of the chronic shortages of health staff in areas that need them most. At a recent meeting here in London we heard how there are now more Malawian doctors working in Manchester than there are in Malawi. That is another issue on which others here will expand today, so I will not discuss that further myself.

Our fifth request to the UK Government therefore is to take the lead with its G8 partners in developing national and international workplace policies, which ensure that HIV positive health staff have rights to treatment, rights to maintain their positions, rights to be promoted and for their insights and experiences, as well as their skills, to be utilised. We also call for the training and new recruitment of other HIV positive people both as professional and as lay support staff.

6)     Positive workplace policies

Many companies are now waking up to the reality that HIV and AIDS can have a highly damaging effect on both their skilled and unskilled workforce. Organisations like Standard Chartered Bank, and the South African Electricity Company as well as the UK Foreign Office and DFID have seen both the economic and ethical advantages of developing positive workplace policies for their staff and their dependents, which seek to overcome stigma, provide care and support for HIV positive individuals and families, and ensure their rights to continued employment. In the case of some of these companies at least, an unexpected positive upshot has been increased staff loyalty to the company.

Our sixth request therefore is for the UK Government to take the lead with its G8 partners in requiring all companies, whether local, national or international,  to adopt positive workplace strategies, including treatment access, as a legal requirement for operating in their countries.

7)     Starting with No. 1….

Apart from all having been leaders of countries which are now in the G8, these three men all had extra-marital affairs whilst in office. History doesn’t relate the accuracy of the suggestion by one member of the audience in the House that they may have all had the same mistress, For some curious reason, history also doesn’t relate whether their wives or their mistresses managed to persuade them to use a condom or not….

We are not here to stand in judgment over their morality. But we are here to talk about safer sex and about what that means for each and every one of us, politicians included. Please remember what was mentioned earlier – most of our members never realised themselves to be at risk of HIV before their diagnosis. And some of our members are politicians’ wives – and their mistresses – also.

Our seventh request to the UK Government therefore is to encourage its own staff and office holders, as well as all G8 government colleagues, to address issues around sexual health, their relationships, HIV and related matters in their own lives. We ask them to consider also what they are doing to support their family members and friends in the choices or other realities which they are facing in their own lives. HIV is not just something that happens out there to other people. So government officials all need to take these issues on board at a personal level also.

8)     Keep rural positive women alive as your benchmark….

I am able to be here because of the drugs which I am on, which I have been taking for over five years now, and which have kept me alive and well. The reason that I am here is because I want to create a better world for the next generation. We had three children, one whom we lost because of this bug which I have in my body, and two others of whom we feel immensely proud, as they take their A-levels this month. They struggle with coming to terms with having a mum who is HIV positive, when this is something which they can’t discuss openly because of the lack of understanding which still stalks this virus in Britain. But we are hugely lucky that the children are not orphans and that I am here to take such pride in their achievements. There are 20 million other women in the world, most of whom will never live to see their children or other young relatives reach this age. They are doing what they can, in any way that they can, to support their families, their friends and their communities. We hear constantly stories of extraordinary strength and resilience in the face of unmitigating prejudice, sickness and death. The list below reflects only some of the contributions that our members are making to this world, and reflects only some of what the world will miss when they have gone. But without drugs to keep them alive and the care and support of the rest of the world to cope with the psychological burdens of this virus, their efforts and commitment to making the world a better place for their families and friends are futile.

Our eighth request to the UK Government therefore is to adopt treatment access to rural HIV positive women as its benchmark, and to encourage the G8, WHO and others to do likewise. We believe that if rural HIV positive women have treatment access, then men and children are likely to be receiving access also – because women have always placed themselves at the back of the queue since time immemorial. Therefore if treatment access is truly happening for rural women, then the world’s health service providers can feel fairly confident that they are starting to get it right for much of the rest of society also.

Of course rural places can also be very conservative places to live, so treatment access issues for injecting drug users, men who have sex with men, sex workers and others marginalised by society will also need to be addressed carefully. But so long as the principles of an approach which   addresses the socio-economic as well as the technical dimensions of treatment access for this virus are followed for all who need it, creating services fit for people rather than trying to fit people into services, then effective treatment access for rural women will be one key progress indicator.

Women, HIV and Hans Christian Andersen

And finally the fairy tale. This is the 200^th anniversary of the birth of Hans Christian Andersen, a citizen of Denmark, which is one of the member states of the EU, which in turn is part of the G8. Hans Christian Andersen was born in a slum, only went to school in his late teens and was considered “effeminate” by his peers. Thus he knew something about the privations and prejudice connected to poverty, lack of an education and people’s attitudes to sexuality. His many fairy tales were written as commentaries on society, both for adults and for children, and his story of the “Ugly Duckling” was apparently an autobiography.

The story of the Emperor’s new clothes, whereby two men pretending to be tailors wove beautiful materials for the Emperor to wear, which could only be seen by those worthy of their office, is a story which holds much significance for our members. As the Emperor paraded through the streets in his glorious new outfit, it was a small child who spoke up and said “but he’s got nothing on”. Whilst members of the crowd took up the child’s exclamation, the Emperor and his courtiers preferred to continue as if nothing was amiss.

Our members often find themselves feeling like the little child in Andersen’s story, trying to cling to the truth and trying to let others hear that truth – but also often finding that the truth is not what their leaders – or indeed others in society - wish to hear.

In conclusion, wouldn’t it be wonderful, in Andersen’s bicentenary year, to start to see the tide change, for the G8 to be those leaders who are remembered because they listened to and acted on the truth that lies around them. We hope and trust that Tony Blair and his colleagues are up to this challenge over the next few months, which just could transform the lives of us all.

Thank you.