In the past when there was no treatment available for haemophilia, the only thing people could do when they had a bleed was to rest in bed and wait for the bleed to stop. In the 1970’s, factor concentrates transformed the lives of people with haemophilia. It meant that people could be active, treat themselves at home and not suffer the acute pain in their joints. However, factor concentrates, like many blood products, were made from pooled plasma and many people who were treated with factor concentrates during the 1970’s and 1980’s were all exposed to HIV infection.
The period from 1983 onwards was a very active, traumatic and emotional time for the Society with the realisation that the blood products which had, at last, promised a normal quality of life, had resulted in the infection of 106 men and boys with HIV. It was a devastating blow for the entire haemophilia community.
Following reports that the AIDS virus could be transmitted sexually, the Society took the initiative and began to distribute condoms directly to members. This resulted in the very low rate of transmission of HIV to spouses and partners in Ireland when compared to the haemophilia population in other countries.
In 1987, the Society undertook a comprehensive survey of the needs of all members who had been infected with HIV. Based on the results of this survey, the Society drafted a booklet called \’Aids, Haemophilia, and the Government\’ which called for a concerted response from the Department of Health and State agencies. When this was not forthcoming, the Society organised a political/media campaign for recompense for people with haemophilia, infected with HIV. The campaign led to a parliamentary defeat for the government and a General Election in 1989. This culminated in the setting up of the Haemophilia HIV Trust (HHT). The HHT has provided and still provides an invaluable service to those with HIV and offers ongoing financial assistance for services for people with haemophilia infected with HIV, and their families. Currently, two members of the I.H.S. continue to represent the Society on the HHT.
The Irish Haemophilia Society continues to offer support, advice, information and services to people with haemophilia affected by HIV and continues to advocate for the best possible treatment available.