2007 World Aids Day Speech

Suresh Vaghela, Chairman, BPNW

Thank you for asking me on behalf of Body Positive North West, to talk about this year’s theme of “Leadership”.  I am personally honoured and humbled at this request.

I stand before you with a grin like a Cheshire cat with this year marking a milestone in my life as it 25 years ago this year that I was diagnosed as being HIV Positive.  The doctors of the time, with a heavy heart and an immeasurable amount of sympathy gave me 6-8 months life span – enough time, they said, to tie up my loose ends. What they didn’t take into account was my lack of organisational skills and after a quarter of a century I am still here tying up those loose ends!

For me leadership isn’t about the individual but about the individual’s ability in bringing about unity and cohesiveness within an organisation.  Those two elements are crucial in the field of HIV where each one of us needs to have a share in that leadership, share in the direction and growth of organisation and help shape the vision of our own future.

We know that significant advances in the response to HIV have been achieved when there is strong and committed leadership. Leaders are distinguished by their action, innovation and vision; their personal example and engagement of others; and their perseverance in the face of obstacles and challenges.

Over 25 million people have been lost to AIDS so far, and 4.3 million people became HIV positive. The spread of HIV is quickening – with more people infected in 2006 than in any previous year. This is despite the number of promises by world leaders to provide services to curb the rates of infection and to bring down death rates. The G8 has made commitments on AIDS which now need to be delivered upon. In other high level meetings, governments of rich countries promised to increase the spending on development aid to 0.7 percent of their annual budget. Only a handful of countries have done so.

In the Abuja Declaration, African leaders committed to allocating 15 percent of their budgets to health. This has happened in just one or two countries, with only one-third of African countries spending over 10 percent. Promises are not being kept because there is a lack of leadership at every level.

Following the 2006 Political Declaration on HIV/AIDS, 92 countries have set national targets towards universal access and 36 have costed and prioritised national plans.

The overall purpose of the World AIDS Campaign from 2005 to 2010 is to ensure that leaders and decision makers deliver on their promises on AIDS, including the provision of Universal Access to Treatment, Care, Support and Prevention services by 2010.

Faith leaders and the communities can help articulate a vision, build relationships and take concrete action in solidarity with all people committed to reaching universal access for HIV prevention, treatment and care.

A recent survey in US, UK, Russia, France, China, India, Mexico, Brazil and South Africa found that 40% do not understand AIDS to be a fatal disease. In India, 59% think there is a cure.  Almost 50% of respondents believed that most HIV-positive people are receiving treatment, when in reality the figure is closer to 1 in 5.

The findings also highlight the prejudice, fear, and stigma that surround the AIDS pandemic. Overall, almost half of respondents said they felt uncomfortable walking next to an HIV-positive person, 52% did not want to live in the same house, and 79% did not want to date someone harbouring the virus. The persistence of such ill-informed and prejudicial views three decades into the pandemic is a tragedy.

Quote Edwin Cameron said;

‘…The most intractably puzzling part of stigma is not the part that lies in others.  It is the part that lies within ourselves.  It is more insidious, and more destructive, than external stigma, for it eludes the direct politically-conscious confrontation that we reserve for discrimination….’

Leadership must be demonstrated at every level if we are to get ahead of the epidemic- this means in families, in communities, in countries and internationally. Much of the best leadership on AIDS has been demonstrated within civil society organisations such as support groups which champion the self-help ethos.

Leaders are distinguished by their action, innovation and vision; their personal example and engagement of others; and their perseverance in the face of obstacles and challenges.  Facing obstacles and challenges is “old hat” for BPNW, but we have met, faced and overcome each and everyone with flying colours and those who have been with us on the journey will have seen this magical transformation.

Those who have seen the new Centre, I thank you for your support and for those who haven’t… shame on you and hope you see fit to rectify this major error and visit us soon!!

My sole reason for being the chair of BPNW is because I whole heartedly believe that there is a holistic approach to managing ones status – and that together we can help each other “My health is in your hands, as yours is in mine and together we have a responsibility to support one another.”

This reminds me of a parable where together we survive and individually we fail;

A student asks a sage that in terms of Karma ‘what is good and what is bad?

The sage leads the student to two doors; opening the first door the student sees a group of people sitting around a circular table with ample food set in the middle.  With their arms tied behind their backs and a long-handled spoon attached to their foot, to feed themselves with, the group still remained hungry and undernourished.

The sage closes Door 1 and opens up Door 2; the student sees the same scenario being played out but in this instant the group are fully fed and over well nourished!

Puzzled at the two different outcomes, from similar settings, the student asks the sage for clarity and understanding.

The sage replies “Group 1 has only learnt selfishness and “me me me” thereby defeating themselves”.

Whilst Group 2 have learnt teamwork and have fed each other thereby succeeding in their task of survival.”

We as a community are together in this and we have to be those behind door number 2. 

Together, and united, we can do this and make the necessary changes and leaders must emerge from the community itself-by the people for the people –therefore the future is truly in our hands.

For the gay community there seemed that there was a pattern emerging and they saw changes as HIV crept into their mist.  Leadership was the key in the early days of the epidemic. The first evidence that we were not helpless against AIDS emerged from the gay communities in the USA, Canada, Western Europe and Australia. It was gay men’s organisations who mobilised their communities on HIV prevention, as well as demanded real action from government, the law, the pharmaceutical industry, and the medical sector.

At this point I, on behalf of the haemophilia community at large, would like to thank the Gay community for showing us how to challenge the health authorities. For the haemophilia community there was no warning, no change in pattern or time to prepare as in one instance we weren’t positive and the next we were.

The changes have been distinct- Initially the natural order of children looking after aging parents shifted because of haemophilia, and for the Asian community this was a complete culture change.

If that wasn’t difficult enough, for all parents, HIV took that glimmer of hope with this second blow.  I found out in the first year at university in November 1983 and none of haemophiliacs were told we were having HIV testing carried out and I was told by the hospital I was HIV positive.

Whilst they knew at the time of the HIV testing I was also diagnosed as Hepatitis C Positive I was not informed till after university around 1990.  The assumption being that HIV would have taken me, and all positive haemophiliacs, well before Hep C took hold and the powers that be decided, for us all, to save us from this worry!

There is still another chapter to this story and as if the additions to my life weren’t enough there were a few select individuals who were chosen in the lottery of life to cross paths with vCJD; and being the fortunate one I happened to be one of the chosen few.  This icing on the cake was shared, with my wife and I, around six years ago in 2001.

Living with all this sounds daunting but it has only been possible knowing that there is an organisation like BPNW able to meet and address all these complexities and allows me to be human and be accepted as an active member of society.

Yes the cocktail of viruses are there but it’s a way of seeing beyond that.  HIV lives with me I do not live with it, and do not intend to

Every day, 10,500 people are newly infected with HIV and 8,000 die of AIDS-related illnesses. For every person who starts taking antiretroviral treatment, another six become HIV positive.

With these statistics we are at a new milestone in the world’s response to AIDS. We are at a point where we must acknowledge that AIDS is not just a short-term emergency, but also a long-term crisis that will require serious commitment and serious resources for decades, not years, to come.

The World AIDS Campaign has launched the Stop AIDS Leadership Pledge. This initiative asks people from all over the world to pledge their leadership to help stop AIDS. Your pledges can be given online at www.worldaidscampaign.net , by mail and at events, and will be used to create exhibitions and banners during major events in 2008. With a goal of 100,000 signatures, the pledges will serve as a persuasive tool for leveraging greater political leadership on universal access to AIDS prevention, treatment, care and support and act as a visual example for key national and international decision-makers to follow. Whether you are living with or affected by HIV, I urge you to make your pledge.

Last, but most critically of all, we must ensure that AIDS achieves its appropriate place, high on international and national political agendas. This means sustaining leadership and commitment at all levels – among politicians, business, scientists, and civil society, particularly people living with and affected by HIV themselves.

Leadership makes or breaks the response against AIDS. We’re unlikely to vaccinate or cure our way out of this pandemic, but we can educate, inspire, inform and lead by example.  I invite you all to take the lead. Pledge your leadership to stop AIDS now.  

Suresh Vaghela

Chair of BPNW, Manchester