Thalidomide Ireland

changing, challenging and facing the future

Interesting Links to The Stories of Thalidomiders

Now, almost 60 years after the drug was unleashed on an unsuspecting public, a class action lawsuit in Australia finally unveils the hidden truth.
The feature documentary ‘NO LIMITS’ follows the tragic story through the remarkable life affirming journeys of survivors around the world, as they grow from children to adults, determined to succeed, still waiting for adequate support and compensation from their governments, the drug’s distributors and the drug’s manufacturer, Grünenthal.

Thalidomide: 60-year timeline

 

Thalidomide was used in the late 1950s and early 1960s to combat morning sickness, but led to children being born without limbs. Fifty years later its German inventor has issued an apology

1953 The anti-morning sickness drug thalidomide is created in Germany by the Grünenthal Group.

1958 Thalidomide is first licensed for use in the UK.

1961 An Australian doctor, William McBride, writes to the Lancet medical journal after noticing an increase in the number of deformed babies born at his hospital, all to mothers who had taken thalidomide. The drug is withdrawn later the same year.

1968 The UK manufacturer Distillers Biochemicals Ltd (now Diageo) reaches a compensation settlement after a legal battle with the families of those affected.

1972 The Sunday Times publishes a front-page lead under the banner "Our thalidomide children, a cause for national shame", part of a long-running campaign for further compensation. Eventually, a total of £28m is paid out by Diageo during the 1970s.

2004 Thalidomide is made available on a named patient basis, meaning doctors can give it to patients only on a case-by-case basis and at their own discretion, under strict controls.

2005 A Kenyan boy with no arms or legs is granted a visa to travel to the UK to receive medical treatment after a campaign by the charity Thalidomide UK. It is not known what caused 14-month-old Freddie Musean Mtile's disabilities, but the charity says the drug is still used in the treatment of leprosy and Aids in developing countries. Mtile dies from a fungal infection the following year. Separately, Diageo agrees to more than double its compensation payouts to thalidomide victims from £2.8m a year to about £6.5m.

2007 A study shows that thalidomide can significantly improve the survival chances of bone-marrow cancer patients. Researchers say adding thalidomide to standard treatment extended the lives of elderly patients with multiple myeloma by an average of 18 months.

2008 The drug is approved for the treatment of multiple myeloma by the European Medicines Agency.

2009 Scientists at the University of Aberdeen claim they have solved a "50-year puzzle" after discovering how thalidomide causes limb defects. They found that a component of the drug prevented the growth of new blood vessels in developing embryos, stunting limb growth. The government agrees to pay a £20m grant to the Thalidomide Trust over three years, after another campaign by the Sunday Times.

2010 The UK health minister Mike O'Brien makes a formal apology to thalidomide victims, expressing "sincere regret and deep sympathy" on behalf of the government. The apology gets a mixed response from victims, with some describing it as too little, too late. Eighteen Northern Irish thalidomide survivors receive a formal apology and £1m compensation from the devolved assembly.

2012 The inventor of thalidomide, the Grünenthal Group, releases a statement saying it regrets the consequences of the drug.

 

Timline

Don't Tell Me I Can't - The  Story of a Survivor

Born without arms or legs due to Thalidomide, life could have turned out very differently. From growing up in a working class family during the Troubles of Northern Ireland, to the USA and back again, this story is of one woman’s determination to live life to the full.

Through support of family and friends, as well as sheer determination Leigh overcame prejudices, lived through the Troubles in Northern Ireland, escaped life with an alcoholic husband while raising two babies, only to find love again.

This is not the story of a “victim” but instead one of a woman who has learned and grown through the experiences life has thrown her way, has never let anyone steal her dreams and is still an activist working for dignity and respect for all people with disabilities.Order Leigh's book here

 

  

Department Statement on Thalidomide July 9, 2012

Minister Reilly has met with the groups representing Thalidomide survivors and has been trying to make progress on reaching an agreement that takes account of their concerns and needs. A key objective of the Minister is to provide for the health and personal social care needs of the persons involved. To that end – among the actions taken - the Department and the HSE have prepared arrangements to ensure that all survivors of Thalidomide are provided with an assessment of their health needs led by Dr Paul O’Connell, Consultant Rheumatologist, Beaumont Hospital and a senior HSE nursing official. The discussions have also dealt with the issue of financial needs. The Minister has indicated that he is prepared to consider a financial gesture of goodwill. The State has been making payments to Irish survivors of Thalidomide since 1975. The payments have been made because it was considered appropriate to make provision for survivors of Thalidomide. As the State does not bear a legal liability the payments have not been made in a legal context. The payments made by the Irish State were designed to augment payments made to the survivors by the German Foundation set up to compensate survivors of the drug. Minister Reilly has stated that he is willing to enter into discussions about a • healthcare package on a non statutory basis • financial gesture of goodwill having regard to current economic circumstances • statement to the Dail recognising the challenges faced by survivors The Irish Thalidomide Association has stated that it fundamentally disagrees with the State's position and is unwilling to engage on this basis. Having taken legal advice, the Minister is informed that the State does not have a legal liability for the injuries suffered by Irish survivors of Thalidomide. All Attorneys General who have considered this issue have concurred with this position. The Minister wishes to make clear that his department stands ready to meet when the representatives of survivors of Thalidomide would wish to do so.

What the Govenment Offered Irish Thalidomide Survivors, 27 April 2010

  • A once-off  ex-gratia payment of €2m (amounting to €62,500 each) to be divided equally between the Irish survivors, as a practical expression of the Government's sympathy;

ITA members reject this because it is derisory. The original 1975 'arrangement' was based on shortened life expectancy, with survivors not expected to live past our 20s. This offer will not address our financial needs into old age as our deteriorating health and mobility decreases.

  • The payment of an annual lump sum, in addition to current payments, equivalent to a further German annual payment which commenced in 2009, of up to €3,680, in the most severe category.

Having waited almost a year for the State Claims Agency report, the Government has shown no initiative in finding a reasonable solution to the Thalidomide issue.  This offer of an extra €1 to €8 a day adds insult to injury for severally disabled survivors.  Continuing to "maintain the historical relativity of German and Irish compensation rates" shows a flawed strategy on behalf of the state considering our fellow German survivors went on hunger strike to protest against this aspect of the compensation in 2009.

  • Provision whereby, if an individual thalidomide survivor has applied for, but does not qualify for either the Disabled Drivers Tax Concession Scheme or the Motorised Transport Grant, their cases will be examined with a view to providing an equivalent level of financial assistance to assist with their transport needs.

This grant is already available to nearly all thalidomiders so it does not address the real cost of adaptions in any way. The cost of adapting a car for one of the ITA's members currently costs €16,000.The maximum available on the motorised transport grant is €5,020.50.

  • Provision for special care packages for thalidomide survivors living in Ireland, to be provided following individual assessments of need carried out by an independent expert to be appointed by the Minister. Dr. Paul O’Connell, Consultant Rheumatologist, Beaumont Hospital has agreed to conduct multi-disciplinary assessments for this purpose.  
  • The designation of a senior manager in the HSE to act as liaison with regard to the ongoing health and personal social services needs of the Irish survivors. Ms Carmel Buckley, a senior nursing official in the HSE will act as liaison for this purpose.

This offer is simply more ink on paper and is a repeat of the failed promises in the 1970s that were given to our parents, who were fearful that our future medical needs would not be met.  Unless the medical needs are put on a statutory footing then it is the same flawed offer of 35 years ago.

 


Finola Cassidy Spokesperson & Secretary of Irish Thalidomide Association call 086 915 1235

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