Haemophilia group moves into headquarters after 40 years

AFTER almost 40 years the Irish Haemophilia Society that championed the rights of haemophiliacs caught up in the blood contamination scandal has permanent headquarters.

President Mary McAleese, who opened the new offices in Dublin’s Liberties yesterday, said it was a “landmark day” for both members and supporters of the society.

The day was more than tinged with sadness, however, because of lives lost and damaged by infected blood products used to treat people with haemophilia between the mid-1970s and 1991.

Infected blood products were responsible for infecting 106 haemophiliacs with HIV and 220 with hepatitis C. There have been 91 deaths.

The society plans to have a permanent memorial to the people who have died in their new offices.

President McAleese said those who had died would also be honoured by those who worked in the new headquarters.

“It is through the work carried out here that a much better future will be crafted for our citizens with haemophilia and related bleeding disorders,” she said.

The society plays an important role in shaping haemophilia treatment policy and has a direct involvement in the selection of medications for haemophilia.

The society's chief executive Brian O’Mahony said it was crucial that the society had its own headquarters because of the broad range of services it provides, not only to people with haemophilia but to carriers of the disease and those with other blood clotting disorders.

“Since I have been involved in the early 1980s we have moved a number of times. At one stage, we were operating from people’s houses and small shared offices. We never actually owned our offices so this is a big step for us,” said Mr O’Mahony.

He pointed out that since 1991 no haemophiliac had been infected with either HIV or hepatitis C as a result of receiving an infected blood products.

“For the past 10 years we have been primarily using recombinant products that are not based on human blood or plasma,” he said.

He said there was great relief among the haemophilia community that the products now being used are much safer than what was available in the past.

The last haemophiliac to be infected with HIV was in 1986.

Two years ago the National Haemophilia Council (NHC) urged haemophiliacs who might have received HIV or hepatitis C before 1992 to come forward to be tested for the viruses.

Mr O’Mahony said one person who had contracted hepatitis C prior to 1991, but had not been diagnosed or identified, came forward.

There are about 450 people with haemophilia in Ireland and more than a 180 regularly attend the society’s annual meetings.

The society also has a very active children’s and teenagers’ programme for up to 100 of its younger members.

www.haemophilia-society.ie

www.nationalhaemphiliacouncil.ie

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