by Declan Montgomery, Ireland

“Political leaders have to work to make our societies more open, caring, inclusive and non-judgemental”

A defining moment for Ireland in terms of HIV stigma and discrimination were the reports in the late 1980’s and early 1990’s of the bodies of people who had died from AIDS, being placed in body bags and carried out by ambulance drivers, fully suited in protective clothing.  In this era prisoners who were diagnosed as HIV positive were also being segregated.  The whole atmosphere at that time was one of fear bordering on panic, and it seemed that society, particularly the media, focused very negatively on those most affected by HIV, primarily men-who-have-sex-with-men (MSM) and injection drug users.  As in most other countries, the issues of sex, particularly gay sex, and drug use were social taboos.

In many ways Ireland has changed dramatically since then, driven by massive social change and rapid economic development.  The growing economy has drawn in thousands of new immigrants from all over the world, and now over 10% of the population is foreign-born. Despite this change stigma and discrimination are still very powerful barriers to people living with HIV (PLHIV).
Since the advent of antiretroviral (ARV) treatment, the cost of treatment has precluded sufficient investment in prevention or measures to combat stigma and discrimination.  Furthermore, the ‘medical model’ – that is, the tendency to see HIV as a clinical issue rather than as a social one – tends to dominate in Ireland, as elsewhere in the West, to the extent that the psychosocial impact of living with HIV is not of real concern to physicians and policy-makers.

Ireland does have legislation covering discrimination, and the Equality Authority has indicated that it would pursue cases of discrimination on the basis of HIV status. No cases have yet been brought however and it is suspected that this is because of the stigma associated with the illness. According to the Dublin AIDS Alliance (DAA) many PLHIV who experience discrimination are loathe to seek redress through the legal system for fear of their names appearing in the newspaper or employers and friends discovering that they are HIV positive.  In other words, the stigma surrounding HIV serves to fuel discrimination in that it acts as a deterrent to mounting a legal challenge. 

There is very little evidence-based data on discrimination available; however, DAA routinely deals with cases that clearly show the low level of public knowledge and consequent stigma associated with HIV.  In one recent case, a school contacted DAA requesting help with the wording of a letter to be sent to parents informing them that a student in the school was HIV positive. In another incident, a doctor who had discovered a patient’s HIV-positive status, was planning on calling the patient’s employers to inform them. He only agreed not to do this, after an HIV consultant called him personally. One can only guess at how any of the people involved in these cases felt having to go through these terrible experiences.

The media also carry a great responsibility for responsible reporting.  An article in the Evening Herald, a major daily newspaper, appeared on 1st December 2005, (ironically, World AIDS Day) about the sentencing of an HIV-positive man from the Democratic Republic of Congo who was found guilty of inflicting grievous bodily harm on an Irish nurse with whom he had unprotected sex. The headline read ‘HIV Beast Infects Irish Nurse’.   Headlines like these may sell newspapers, but they only reinforce prejudice and make it more difficult for PLHIV to live their lives free from stigma and discrimination.

Another consequence of this negative reporting is that it can only make it more difficult for people to test for HIV as it is presented as not just an illness but also a moral indictment.
There is clearly a great need for a comprehensive strategy of public awareness of HIV, as a means of combating stigma and discrimination. Society can enact laws to protect people from discrimination but changing attitudes is the real challenge. The law is a blunt and inadequate instrument for that purpose, and investment in education and public awareness is crucial.
 
In advance of the recent midterm review of the United Nations Declaration of Commitment on HIV/AIDS, PLHIV representatives and civil society stakeholders throughout Ireland called on the Taoiseach (the Irish Prime Minister), Bertie Ahern to publicly commit to the development and resourcing of a national education and awareness campaign to combat the stigma associated with HIV.  In his address to the United Nations, the Taoiseach stated,“If we are to succeed in reversing this epidemic, we must also tackle the stigma and discrimination associated with it. Political leaders have to work to make our societies more open, caring, inclusive and non-judgemental.
 
We plan to do more to deal with this issue in Ireland. As a first step, we will have a national campaign to combat stigma and discrimination against people infected with HIV in Ireland coinciding with World AIDS Day on 1 December this year.

Civil society has been central to Ireland’s response to HIV, at home and in the countries we support. They have shown that they can reach marginalised groups; speak out for the victims; form partnerships; and do the on-the-ground work. The work of non-governmental organisations and missionaries must be commended, especially their efforts in caring for the sick and vulnerable children”

Following from this speech, domestic and development NGOs, statutory service providers, PLHIV representation, the Department of Health and Children and Irish Aid have formed a multi-stakeholder forum to tackle HIV-related stigma and discrimination in Ireland.  An initial budget of €300,000 has been allocated to fund a series of co-ordinated actions to promote better understanding of people living with HIV, while actively challenging direct and indirect discrimination experienced by PLHIV throughout Ireland.  This initiative, while embryonic, is widely welcomed but also long overdue.

Ireland has changed as a society since the 1990’s in terms of dealing with HIV.  Discrimination and stigma may generally be reduced in a more open multi-cultural society, and the general availability of ARVs has made a huge impact on people living with HIV and their families.

However, the cost of treatment has precluded sufficient investment in prevention and awareness strategies and consequently a whole new generation of young people are emerging in Ireland wholly complacent about HIV.  Stigma and discrimination thrive in a climate of silence; we need to speak about HIV in the workplace, at home, in school and in our daily lives if we are to successfully challenge the irrationality that shapes discrimination of any kind. 

The stigma and discrimination campaign is a first step towards changing public perceptions and attitudes to HIV, while empowering people who live with HIV to do so without fear of rejection or of prejudice.

For more: www.hdnet.org