By September 2002 in Ireland and the UK 56,613 people were diagnosed HIV positive. It is estimated a further 18,000 people are living with the disease as yet undiagnosed. Yet these figures are small in comparison to the three million people globally who died of AIDS in 2003 or the estimated 40 million people living with the disease. December 1st is World AIDS Day. John Monaghan 18 and Daniel McCrisken 14, young Children's Express reporters, examine the global problem through the eyes of a local woman who has been living with HIV for nine years.
| A solid glass wall seemed to have been erected between me and the rest of the world |
Deirdre (not her real name) from Belfast was infected with HIV in 1996 whilst living in Zimbabwe. It was after her partner became ill that she tested HIV positive. Her partner had TB and died from AIDS in June 1997. Deirdre has since returned home to Northern Ireland and now works for an international development agency.
"A solid glass wall seemed to have been erected between me and the rest of the world. I could not think clearly about my future. How could I have relationships? Would I ever have children? How long would it be before I got sick?''
To add to the complications Deirdre was pregnant.
''When I became pregnant it was not planned and that in itself was a bit scary for everybody. I don't think I realised how scared I had been about the possibility of passing on the infection until my daughter was cleared. I felt such a relief that she didn't have it!''
Having her child gave Deirdre new motivation.
''Yes, certainly the cliché 'something to live for' rang true. There had been times in the past when I had felt suicidal, because the future was filled with uncertainty.''
Deirdre says that the support network for those suffering from HIV or AIDS here in Northern Ireland has improved greatly.
''I have to say that there is support. It is a tricky situation in that how do you organise when confidentiality is such a big issue and people don't maybe want to come into a peer support group and meet people face to face because we know we'll bump into each other in the street, in other social settings - how will we keep secrets there? The sort of medical support at the clinic is great and there is a host of doctors, nurses, specialists and social workers who take you into their fold and look after you. However, the improvement in life expectancy needs to be set against rising rates of infections. There is a great pressure on the services that are available so it can take longer to see a doctor.''
This contrasts greatly with parts of the developing world in which support is almost non-existent. Deirdre believes that a much weaker infrastructure in poorer countries means the problem is far harder to tackle. In Zimbabwe alone there are 1.8 million people infected with HIV (17% of the population) and as Deirdre explains, for the majority a HIV diagnosis is effectively a death sentence.
''The reason for shorter life expectancy is poverty, lack of access to food and lack of access to doctors. Living with HIV without access to proper support is terrifying. You can start to contemplate telling people about it if you live in the UK and you're not telling somebody that you're going to die. You can contemplate thinking about it yourself without panic when you know that this isn't actually a complete death sentence. However, it's a completely different kettle of fish in the developing world if you realise you need to depend on your family, who have very little to begin with, that you are going to get ill and will need their financial, physical and emotional support."
Deirdre stated that many countries in sub-Saharan Africa are still struggling to implement effective public education programmes designed to prevent the spread of the pandemic.
''An increasing number of youth led peer education initiatives are getting clear, relevant honest messages across, but there are those who preach a more moral message. This can fuel some of the stigma that people living with HIV and AIDS suffer. At the end of the day once someone has HIV how they became infected becomes irrelevant. Somebody said to me in Zimbabwe, 'if a dangerous snake comes into your hut you don't ask it where it came from, you batter it and get it out'. This is really what we need to look at. How can we beat this virus?''
Deirdre says that we cannot leave the problem to Africa to deal with.
''Many countries are chronically under-resourced. When I lived in Zimbabwe I felt there were efforts being put into the prevention message and palliative care, but often not enough support for people living with the virus."
As a mother, Deirdre is particularly concerned with issues affecting children.
''This lack of support makes the burden on families immense - and sadly this burden is too often carried by children. Orphaned young children are increasingly heading households, caring for sick relatives.''
Deirdre tried to explain how hard it is for someone living with HIV in the developing world.
"One of the reasons my partner became very ill was because he didn't get his proper TB drugs. It would have meant going back to his family and asking for more money. He felt a big enough burden already. If he had, as we have here, disability living allowance, or sickness benefit and housing benefit, plus free access to the doctor, it would have been very different. There was no sort of part-time work or the kinds of opportunities that maybe here to ease somebody back after a long period of illness. He simply did not know how he could ever look after himself. The wider network of support wasn't there and I think that was terrifying. I mean, how do you survive in a society like that unless you are strong, and you have your full strength?''
According to Deirdre ignorance and fear are critical issues that need to be challenged worldwide if better treatment is to become available.
''There's a general issue per se across the world, it's not just in developing countries, on talking about the death of young adults. The sheer fear of how untreatable and serious it is makes people not talk about it. People say that I'm brave to say I've got HIV - why? It still is such a stigma to have a disease that you've contracted - why? We need to deal with this stigma. It creates isolation. One of the major issues is that the majority of children who have the virus were infected at birth and have lived their whole lives with the virus and the stigma. Those are all issues that make it difficult to talk about HIV-AIDS in any society.''
Asked what urgent action is needed to tackle HIV-AIDS globally Deirdre said,
''It's drug companies in terms of making the drugs accessible at cheaper rates. Governments in developing countries need to make the commitment to basic health services beyond defence spending and beyond debt repayments. In the G8 it's about making debt cancellation a priority and liberating countries from poverty.''
So how can readers help on World AIDS Day? Deirdre believes getting involved could not be easier.
''Stick on a red ribbon; show a bit of solidarity; find out more; lobby! It is going to help somebody somewhere. You don't know who is going to see your ribbon.''
For further information read the HIV-AIDS factfile
About the team
This story was produced by John Monaghan, 18 and Daniel McCrisken, 14. It was published by Irish News.
