Mr. Niall Mulligan:

I am the executive director of HIV Ireland. The organisation has been in existence since 1987 and was formerly known as Dublin AIDS Alliance. I thank the joint committee for giving me this opportunity to discuss with it the topics of HIV in Ireland and HIV related stigma. Over 7,000 people have been newly diagnosed with HIV in Ireland since the 1990s. We estimate that approximately 3,500 people are knowingly living with HIV in Ireland today. While there has been a significant and welcome improvement in treatment for HIV, concern remains about the rising numbers of those newly diagnosed in Ireland. In 2013 there were 344 people in Ireland newly diagnosed with HIV. This figure increased to 377 in 2014, an increase of 33 on the figure for 2013. The 2014 figures from the Health Protection Surveillance Centre show that HIV continues to disproportionately impact on men who have sex with men. However, there is also a sizeable number of heterosexuals contracting HIV. According to official figures from the Health Protection Surveillance Centre, in the first two quarters of 2015 there were 203 new HIV diagnoses in Ireland. A similar number of diagnoses were made in 2014. The statistics for routes of transmission were: men who have sex with men, 95; heterosexuals, 38; people who inject drugs, 26; mother to child transmission, one; and unknown, 44.

It should be noted that the 2015 figure for people who inject drugs for six months is only one behind the figure for the 12 months of 2014. We need to keep a close eye on why that is the case. Current thinking attributes it to more frequent use by intravenous drug users of a drug combination called snow blow. There is close monitoring of this issue across the country by us and the public health authorities.

Provisional data for the period January to November 2015 indicate that there have been 427 new HIV diagnoses to date, a worrying increase of 85 of the figure this time last year. While some of the new diagnoses can be put down to increased testing, it is likely that we are only now beginning to see the true picture of HIV levels in Ireland. We must continually remind ourselves that as HIV diagnoses continue to increase, the World Health Organization estimates that 30% of people who are living with HIV are not aware that they have it, such that the true HIV figures are likely to be higher. There can be many reasons for this, including lack of access to testing, lack of awareness of HIV and the ongoing stigma attached to living with HIV.

As I said, HIV Ireland has been in operation since the 1980s. With the onset of improved treatment in the late 1990s, there was much hope the stigma attached to HIV would begin to dissipate. People using our services and others across the country began negotiating on the possibility of new relationships and careers and further education and travel, while some began thinking of buying apartments and houses. Members will be aware that for a person diagnosed with HIV in the late 1980s and early 1990s, that was not on the cards because they would have been given only one or two years to live. On the surface, these are incredibly reasonable objectives for any person. Unfortunately, the change presented far more complex issues for them and us as an organisation. People began to experience the negative consequences of disclosure of their HIV status in these new situations and witnessed the chaos that disclosure could cause in their workplaces, colleges, community employment courses and, more worryingly, many health care settings. They were now fit enough to travel but were barred from entering many countries to see their families and friends. That remains the case today. There are now more than 50 countries to which people living with HIV cannot travel.

Sadly, the support and advocacy work we do today is not that different from what it was all those years ago. We still work to navigate people through their diagnoses, disclosure and its repercussions. Unlike in the early days, we now have the arm of the Human Rights and Equality Commission, the Ombudsman’s office and the Garda ombudsman’s office to investigate situations where someone living with HIV is treated differently from someone whose HIV status is negative or unknown.

The stigma attached to HIV is as insidious as the virus. Like many other stigmas, it is complex. Who stigmatises, how they stigmatise and why are research questions often asked of people living with HIV. They are seldom, if ever, asked of the classmates, employers, health professionals, police, media and faith communities our service users cite as having stigmatised or treated them differently because of their HIV positive status. The word "stigma" is thrown around a lot, but I will try to give it some practical context.

As part of our work last year, we provided support for a man who had found a job as a fitness instructor on a cruise ship but was fired two days later when he disclosed his positive status and for a woman who had been told by a leading national disability agency that she could not avail of its services. We spent some time trying to convince a crèche manager that she did not have to inform all parents of a child’s HIV status. There was no requirement for her to do this, but she thought she should do it. We also provided support for a woman who had been informed by an holistic therapy college that she could not practise reflexology and dealt with several dentists who had refused to treat our service users, referring them instead to the Dublin Dental Hospital, even for minor procedures, for which they were given the last appointments each day because of concerns about cross-infection, which concerns are not sustainable. The list goes on. Self-stigma also impacts, at times profoundly, on people’s lives. Feelings of self-shame and worthlessness require a level of personal support that is increasingly being left behind by our quantitative based, outcomes oriented, value for money approach to health.

Worryingly, HIV stigma is institutionalised in Ireland.

When a judge orders compensation of €100,000 to a garda who was spat on by a man whose HIV status was not even known or when a social protection worker has to take six months leave because she too was spat on, they held, to cite Ms Justice Mary Irvine, a significantly inflated view of potential risk. There was indeed no risk, even if the individuals were HIV positive.

Despite the advances in medication, our work is far from over as these examples testify. All of us working within the area of HIV and AIDS seek to challenge HIV-related stigma. We aim to make HIV a health issue rather than a question of morality, culture or lifestyle. There are many practical responses to challenging stigma and these are encapsulated within the current national World AIDS Day campaign of providing solidarity and support for people living with HIV, increasing our knowledge of HIV and the visibility of HIV within society and challenging HIV stigma and discrimination as and when we encounter it. Fundamental to this is accepting people living with HIV as equal human beings who are not simply defined by their illness. Like everyone else, the people with whom we work have a right to education, to make informed decisions about their own lives and to be respected. Stigma takes these rights away and can result in dehumanising people living with HIV. The responsibility lies with all of us to break it down.