History of the Irish Haemophilia Society

To all our members who have journeyed with us over the past forty one years, and to those who joined the journey along the way, we acknowledge and thank you for your support and friendship, without which we could not have achieved all that has been achieved.  The value of the programmes we organise is reflected in the attendance of so many of you at Society events, and we will continue to rely on your feedback and support as we endeavour to respond to the changing needs of all our members.  We celebrated forty years in 2008, and we remember all those who have died, we realise our strength is in our unity, and we look forward with realistic hope to a bright future.

Below you will find an historical timeline of the first forty years.......

1968

Extracts from the first I.H.S. Meeting

The Irish Haemophilia Society was founded in 1968 by members of the medical profession, people with haemophilia, their families and friends, who felt the need to provide support and advice for members and to improve the quality of life for people with haemophilia. 

1969
A meeting of the World Federation of Haemophilia was held in Dublin, at which Society members were addressed by international experts for the first time.  The Society produced its first newsletter in August 1969.  The Government announced that it was setting up a National Haemophilia Centre at the Meath Hospital for adults and for children at the National Childrens’ Hospital, Harcourt Street the following year. 

1970
Ninety patients were registered with the National Haemophilia Centre, sixty five with haemophilia A, twenty one with haemophilia B and four with von Willebrands Disease. Throughout the 1970’s haemophilia progressed from being a severely debilitating disease to a manageable one. The quality of life for people with haemophilia improved, along with the knowledge and expertise of the organisation. The Society offered support to members who were hospitalised in the Meath & Harcourt Street hospitals. Support included visits, provision of games and access to television because in this pre-home treatment era, many people spent significant amounts of time as inpatients.

1975 to 1982

Home treatment

In 1977 a new centre opened in St. James’s Hospital.  Home treatment was on the increase, a normal quality of life seemed attainable and the Society offered support to members with home visits, newsletters, and other services.  At this stage the committee met at the headquarters of the Irish Cancer Society on a regular basis. By 1982, life expectancy had increased to sixty and life was becoming normal for many members of the Society.

1980's
The period from 1983 was a very active, traumatic and emotionally difficult 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 one hundred and six members of the Society with HIV.  It was a devastating blow for the entire haemophilia community. As a direct result of infection with HIV and Hepatitis C, to date some ninety one people with haemophilia have died, and the lives of many individuals and families have been decimated. The Society had to face into this immense challenge as a small organisation with a number of dedicated volunteers but no staff, no resources and no office.   

1983
The Society produced a report on the need for a new National Treatment Centre. The Society also funded research into the immune system of people with haemophilia in an early response to the spectre of Aids.

1985

Margaret King

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.

1987
The Society undertook a comprehensive survey of the needs of all of the members who had been infected with HIV.

1988

I.H.S. Publication 'Aids, Haemophilia and the Government'

Based on the results of the 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.

1989

Rosemary Daly & Brian O'Mahony

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 National Election in 1989. This culminated in the setting up of the Haemophilia HIV Trust (HHT). The HHT has performed invaluable service to those with HIV and offers ongoing financial assistance for services for people with haemophilia and HIV and their families. Two members of the I.H.S. continue to represent the Society on the HHT.

1990

I.H.S. Staff during the 1990's

The Society offered assistance to members who were suffering from the clinical consequences of HIV and Aids, and provided a critical illness service, home support and nursing service for members. This service continued throughout the decade.

Fr. Paddy Mc Grath

Support and assistance was also provided to members who were pursuing legal action in relation to their infection with HIV. At the AGM of the Society, we commissioned a lecture on Hepatitis C, an ominous new threat to the community.

Irish Press Article, 19th December 1990
“Haemophiliacs’ who have been infected by the Aids virus through blood transfusion are victims on the double and their plight should command the most serious attention of the Government. Yesterday it was revealed that since the famous Dail motion on their behalf in June of last year fifteen such hemophiliacs’ have died and another fifteen to twenty will have died by the time legal actions on their behalf have begun at the end of next year. This is not a situation which either the Government or general public can contemplate with anything but the gravest disquiet. It is profoundly sad that these hemophiliacs’, through no fault of their own, should have to face the long slow agony of death by Aids. But it is nothing short of disgraceful that they should go to their graves plagued also by the gnawing worry that their families might not be secure. In many cases, these unfortunate victims or their wives have had to give up their jobs because of the constant care which this condition demands. The British Government, not exactly celebrated for its caring attitude, recently recognised its moral duty towards hemophiliacs’ in this dreadful situation. It is time for our Government to do likewise”. 

1991

Four candidates who stood in the local elections

Concerned by the mounting death toll from HIV and tortuously slow progression of the legal action, the Society again was compelled to mount a media and political campaign to negotiate a HIV compensation settlement with a reluctant government. Four members of the Society stood in local elections. Following several months of campaigning, a political settlement was reached. This resulted in payments ranging from IR£77,000 to IR£101,000 to each individual with HIV. A payment of IR£20,000 was paid to the families of those who had died as a result of their HIV infection. 

1992
The Society turned its attention to seeking improvements in the provision of comprehensive haemophilia care and monitoring developments with blood products. The Society drew up a Blood Product Policy which was communicated to the Department of Health and the National Haemophilia Treatment Centre. The policy set out the Society’s objectives for haemophilia replacement therapy for the next five years. All of the objectives set out in the Blood Product Policy were achieved. The Policy was updated in 1996.   

1992

European Haemophilia Consortium

A meeting of the European Haemophilia Consortium was organised by the Society in Dublin.  The Society engaged in a Twinning Programme with Hungary.  The death toll from HIV continued to increase and the Society continued to offer a high level of service to those affected and their families. Infection of members with Hepatitis C through contaminated blood products emerges as an issue of increasing concern.   

1992

The Society moved to a new Headquarters in Eustace Street.

1993
The Society celebrated its 25th anniversary.  The AGM was attended by President Mary Robinson.

1994
The Society initiated discussions with the Department of Health in relation to provision of treatment for members who had been infected with Hepatitis C.

1995
The Society negotiated a Compensation Scheme with the Irish Government for people with haemophilia infected with Hepatitis C and agreed that members would attend the newly established Hepatitis C Compensation Tribunal.  

1996

Health (Amendment) Act Card

The Health Amendment Act is passed with the provision of additional health benefits for members with Hepatitis C.

1996

World Federation Congress Dublin 1996

The International Congress of the World Federation of Haemophilia was held in Dublin. Some two thousand, four hundred delegates from seventy countries attended, which was a record number.  The Society’s Patron the then President of Ireland Mary Robinson attended the Congress and addressed the delegates. The Congress was a major success scientifically, socially and in terms of attendance as well as being a major financial
success. 

1996

Blood Product Policy

The Society worked on a new Blood Product Policy, setting out goals for 2000, and on a new Policy on recombinant products for all, with aspirations for prophylaxis set out. 

1997

Women with Bleeding Disorders

We held seminars for Women with Bleeding Disorders in Dublin and Cork which were attended by a large number of women, many of whom were attending such meetings for the first time. This broadened membership of the Society. The numbers of women joining the Society continued to increase. Following meetings with the Minister for Health, recombinant products were provided for all persons with haemophilia A.

1997
The Society withdrew from the Finlay Tribunal of Inquiry into the Blood Transfusion Service as the tribunal was not dealing in any substantive way with the issues relating to the infection of people with haemophilia. 

1997 to 1999
The Society was involved in negotiations with the Department of Health and the Attorney General regarding the Terms of Reference for a new Tribunal of Inquiry into the infection of people with haemophilia with HIV and Hepatitis C. 
 
1998

President Mc Aleese opening our office in Smithfield

To mark the 30th anniversary of the Society a publication was produced covering the history of the first 30 years of the Irish Haemophilia Society. The Society moves to a new Headquarters in Smithfield. 

1999 to 2001

Tribunal News

Following protracted negotiations and many delays the Terms of Reference for a Tribunal of Inquiry, into the circumstances of infection of people with haemophilia with HIV and Hepatitis C was finally agreed and the Lindsay Tribunal began hearings on 2nd May 2000. Because of the great importance and significance of the Tribunal to our members, and due to the fact that many members would not be in a position to attend the hearings, it was decided to produce the ‘Tribunal News’ which would synopsise in layman’s language the daily proceedings at the Tribunal .The Tribunal News was distributed to the membership of the Society on a weekly basis throughout the hearings of the Lindsay Tribunal of Inquiry. Following one hundred and ninety six days of evidence, the Society presented its final submissions and recommendations for the future on days 189-191 of the Lindsay Tribunal.    

2001
The Product Selection Group (now the Haemophilia Product Selection and Monitoring and Advisory Board) was established. The Society presence on this board gives the organisation a formal role in the selection of factor replacement therapy for people with haemophilia, von Willebrands and related bleeding disorders for the first time. The formal involvement of the Society and key clinicians means that safety, efficacy and quality are, and will continue to be, foremost in the list of selection criteria. To date, the board has completed eight National Tenders resulting in the purchase of some two hundred million units of factor concentrate. 

2002

The Lindsay Tribunal

In September 2002 the report of the Lindsay Tribunal was published. During the Dail Debate which followed the publication of the report, the Minister for Health made a commitment that people with haemophilia in Ireland will always have access to the safest and most efficacious products available. In line with the recommendations in the report the Minister for Health agreed that a National Haemophilia Council (NHC) should be set up as a Statutory Body to advise the Minister, the Department of Health, (and later the HSE) and hospitals on all aspects of haemophilia treatment and care.

2003
Although HIV treatment was much better and had improved since 1996 the clinical impact of Hepatitis C was an increasing problem. 

2003

Creche

Kidlink

Participation by young people and children at AGM’s and conferences increased to the point where the Society initiated a new format for our conferences. We introduced four strands to each of our major conferences, the main programme of lectures, a programme for teenagers, young adults, a childrens programme and crèche facilities.

2004

National Haemophilia Council

The National Haemophilia Council became a Statutory Body with formal involvement for the I.H.S. in recommending policy and priorities on haemophilia. 

2004
The National Haemophilia Council managed a vCJD risk assessment based on the risk to members who had used plasma derived concentrates from the UK in the past. This was the first major example of proactive collaboration between the Society, the clinicians and the Department of Health. 

2006

The Insurance Scheme

The Hepatitis C & HIV Insurance Scheme was signed into law.  A members conference was organised in October and was sucessful to the extent of becoming an annual event.

2006
The Society set out a new Strategic Plan designed to ensure that  optimum levels of support and services were provided to all members, that the Society is effectively represented on all external bodies and agencies, and ensuring the long term viability of the Society.   

2007
The Insurance Scheme started. The Society worked with individual members to optimise their participation, and availability of the Scheme. By the end of the first year of the Scheme, forty percent of eligible members had availed of Life Insurance which was a multiple of the take up from other eligible organisations. 

2007

President Mary McAleese opening our new headquarters

Finally, our own new headquarters.  The Society moved to a brand new Headquarters in New Street in Dublin 8.  The new Headquarters was officially opened on 14th June 2007 by President Mary McAleese. A DVD was produced by the Society and features several members of the Society who explained the development of haemophilia care in Ireland over the past forty years by telling their personal stories. 

2008

Memorial Sculpture

The Society celebrated forty years. To mark this occasion a service was held in our Headquarters to mark the unveiling of a sculpture which represents a time of tragic loss, achievement and hope for the future. 

21st EHC Conference 2008

We proudly hosted the European Haemophilia Consortium Conference in Dublin Castle which was attended by delegates from 35 European countries.

2009

Kidlink Group

Creche

Young Adults - Birr Adventure Centre

Today the Society is vigilant on safety and availability of treatment, and is thankfully maintaining a strong and united organisation. We produce various publications and DVD’s, organise Information Meetings, Annual Conferences, Family Weekends, Regional Visits, and updates on treatment.  We have an excellent board and staff, young enthusiastic members, and are working in a strategic and planned manner. We contribute effectively to the National Haemophilia Council, Product Selection Board and Consultative Council on Hepatitis C. We have a permanent headquarters, and provide services for all categories of members.  We remember those who have passed away.  We remember and have learned from the tragedies which have befallen our community and we look to the future with confidence and hope.
 

Click here to view a presentation titled "Intoduction to the Irish Haemophilia Society"