‘I will never forget two handsome young blond haemophiliac brothers dying from Aids’

It was not easy being young in the late 1980s and seeing young people die from Aids and HIV, which was a new virus in Ireland at the time.

I was a newly qualified nurse and midwife trained in the Mater and Coombe hospitals in Dublin when I took up a position in St James’s Hospital on the oncology, haematology and HIV and Aids unit.

We all knew very little about HIV and Aids at the time.

I will never forget two handsome young blond haemophiliac brothers dying from Aids, infected through the blood-clotting protein Factor VIII, their treatment for haemophilia, which was imported from the US back then. It was a very sad time in that everyone infected with HIV died of Aids during those years.

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All the team in St James’s Unit were impacted, including all the doctors and nurses, with support staff trying their best to ease people’s pain with palliative care and treatment of accompanying opportunistic infections.

The secrecy was challenging also, as stigma forced many people to hide their HIV status from family and friends. It was easier to say that they had a cancer or leukaemia. I remember mostly young men, as transmission was through the Factor VIII for haemophilia, men who were using intravenous drugs, especially in inner-city Dublin, and gay men at a time when homosexuality was still illegal in Ireland.

The pain of a terminal illness is bad enough physically and emotionally, and the burden of hiding a HIV diagnosis was exacerbating the suffering for all. Previously fit and strong young people were reduced to skin and bone, until they were bed-bound. It was horrible, undermining their dignity and self-worth.

I still remember the kindness that was shown to them by all the staff, and the sadness everyone felt too. We knew we were dealing with something quite pernicious and unrelenting. No treatment could save their lives. We could only provide compassion and comfort.

Feeling powerless

Families, relatives, partners and friends felt powerless in the face of Aids, too. It was like someone was stealing their precious one, and there was nothing that they could do to stop it. Deaths from Aids in the early days were far too many and shocking for us all.

In the early 1980s, HIV had been first reported in the US and Europe, and by the end of 1985 every region in the world had reported Aids cases. During the 1990s there was a big increase in the number of people infected with HIV and dying of Aids globally, and women soon outnumbered men as heterosexual HIV transmission gained momentum.

Eventually, HIV treatment came to Ireland in the form of highly active anti-retroviral therapy (Haart) in 1995. It changed the course of the epidemic from a killer disease to one that a person can live with. The number of Aids deaths in Ireland fell dramatically.

However, it took longer for treatment to reach the poorest countries, where millions of people were dying of Aids. This was one of the reasons why, in 1988, I joined Concern Worldwide988, Ireland's largest overseas aid agency, and it is why I am still here and why I am also involved with many organisations and committees committed to preventing the spread of infectious diseases, including HIV and Aids. I wanted to do what I could for the poorest in Africa, where communities did not know how to stop this "slim disease", as many called it due to the dramatic weight loss and early death.

Through my work with Concern, I have seen the tragic outcome for people left untreated. More than 18 million children have lost one or both parents to Aids globally. I have met children in countries such as Malawi, Tanzania, Uganda, Zambia and Zimbabwe who didn't understand why their parents faded away on them.

I remember visiting the Missionaries of Charity house in Monrovia, Liberia, in 2004 and seeing the sad, frightened and gaunt face of Aids among young adults who were receiving exceptional care from the sisters at the time, despite their lack of sufficient and effective HIV treatment. My Concern Liberia colleague Julia recognised one of the very sick young women, Krubo. They had been to primary school together. Krubo could barely whisper as she was so weak. One of the sisters told me that many people received no visitors after they came behind the "black gate" – the local name for this centre, as the gate was painted black.

The problem of shame, and stigma was very real.

Treatment for life

I only saw one person with a visitor on the day we were there, and that was a woman trying to feed her dying sister, who was too weak to sit up. It was distressing and sad to see, similar to when people were dying in Dublin in St James’s Hospital in the late 1980s and early 1990s.

The sisters received some anti-retrovirals from the main hospital in Monrovia and tried to maintain a supply for those who had started treatment, as treatment is still for life for everyone who starts on HIV medication. Many new patients were awaiting treatment as the medicines available were insufficient to supply all who needed them. Julia requested that as soon as anti-retrovirals became available, that Krubo would start on them.

In 2005, nearly 8,000 people a day were dying around the world from HIV and Aids-related illnesses. At the time, I was back in Liberia to facilitate a HIV and Aids workshop with the Concern team in Monrovia.

I asked about Krubo. She was back on her feet and responding well to treatment. She came to the workshop to give a testimony from when she was in “Charity House” to now being at home and living positively. I did not recognise her as she had gained weight and looked so happy. It was very convincing that the HIV drugs worked.

Krubo was now receiving solidarity and social support from the Light Association, a local network for people living with and affected by HIV and Aids in Liberia. Julia told me Krubo went on to convince many people to go for a HIV test and to get their results and that there was hope in a future living with HIV.

As a nurse, nothing beats seeing a person recover from a life-threatening illness. However, there is still no cure for Aids and much more needs to be done to eradicate it.

The devastation caused by AIDS-related illnesses is sobering: 77.3 million people have been infected with HIV since the start of the epidemic in the 1980s, and 35.4 million people have died.

Today, almost 37 million people globally are living with HIV, affecting many families and communities worldwide.

And Ireland is not immune. From the early 1980s to the end of 2017, 8,826 people have been diagnosed with HIV in Ireland. It is estimated that 7,205 people were living with HIV in Ireland at the end of 2017. This follows a large increase (30 per cent) between 2014 and 2015, and a smaller increase (5 per cent) between 2015 and 2016. The Health Protection Surveillance Centre reported 531 HIV diagnoses in Ireland at the end of last year. In the first five months of 2019, there were 195 new HIV diagnoses in Ireland – 17 more than the same period last year.

Irish deaths

Sadly, people also do still die of Aids in Ireland. There were 11 deaths reported to the Central Statistics Office in 2017 where the cause of death was Aids or HIV (seven male and four female).

As someone who has been working on responding to HIV and Aids since the late 1980s, it is also disturbing to know that there are about 10 new HIV diagnoses in Ireland every week, and almost 5,000 people per day still become infected with HIV internationally, for what is a preventable viral infection. About 1,000 of the new daily infections are among adolescent girls and young women aged 15-24.

I worry about increasing drug resistance to HIV and the fact that funding for treatment is falling. Many people need stronger and more expensive anti-retrovirals to keep the virus undetectable in their body so that they cannot pass it on to others.

Education is key – often described by HIV and Aids campaigner Fr Michael Kelly as the "social vaccine". It is essential for prevention and the best approach in terms of investment. Here in Ireland, and in all countries, I would like to see sexual reproductive health education included in primary school curriculums for 10 to 12-year-olds, delivered in an age-appropriate way, aiming to prevent unplanned parenthood, sexually transmitted infections, HIV and cervical cancer.

Rights and responsibilities regarding consent and respect to protect against gender-based violence has to be included among the topics, to be provided by appropriately trained teachers or/and facilitators.

The empowerment of young women is also crucial to reduce their risk and vulnerability to HIV. Education and economic empowerment can be life-saving. We must ensure that all young people are fully of aware of the risks of not protecting themselves and that they take action to stop the spread of HIV and Aids.

Money alone will not stop the spread of HIV. World leaders and governments must demonstrate how committed they are to tackling the problem by strong leadership and adequate investment to end Aids by 2030 (Sustainable Development Goal 3, Target 3.3). Irish Aid in its new Policy for International Development, A Better World, is committed to launching a new initiative around sexual and reproductive health and rights, incorporating within their partnerships for health and HIV and Aids.

The silence surrounding the virus has to be broken everywhere. Poverty, inequality, injustice and stigma and discrimination continue to be the main drivers of the HIV and Aids epidemic around the world. We have the capacity and resources to stop Aids if we do not become complacent. Aids is not over yet. It is time for all of us to help finish the job here in Ireland and in all countries.

Breda Gahan is Concern Worldwide’s Global Senior Health and HIV adviser