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EU talks in campaign for drug settlement for Thalidomide survivors

Posted by Carmel Daly McDonnell on January 8, 2014 at 6:05 AM Comments comments (0)

EU talks in campaign for drug settlement

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08 January

2014

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A THALIDOMIDE victim from Yorkshire is to hold talks with the EU Health Commissioner as he steps up his fight for justice against the German pharmaceutical company which developed the anti-morning sickness drug.

 

Guy Tweedy and four colleagues – who are representing the UK’s 469 remaining Thalidomiders – have secured a meeting on Friday with Antonio Borges, in the hope of brokering a compensation talks with Grunenthal and the German government.

 

The meeting comes after a concerted lobbying campaign of UK MEPs by leading Thalidomide victims, who aim to secure a financial settlement from Grunenthal for UK, Swedish, Canadian and Australian victims of the “wonder drug”.

 

Mr Tweedy, 51, a businessman from Harrogate, said: “Over the last few months we have had a series of meetings with UK MEPs and, thanks to their support of our campaign, we now have a face to face meeting with Mr Borges.

 

“We hope we will be able to persuade him to use his influence to mediate a solution that will lead to us sitting down with representatives of both Grunenthal and the German government, and, ultimately, receiving compensation for the lasting damage their drug has done.”

 

Mr Tweedy, who was born with shortened arms and fingers fused together, added: “In 1971, the German government passed a law protecting Grunenthal from anyone taking legal action against it in relation to Thalidomide.

 

“However, the company needs to own up to its responsibilities and help those who have been living with the side effects of 
Thalidomide for more than 50 years.”

 

Thalidomide was administered to pregnant women to combat the effects of morning sickness, however, in May 1962 the drug was withdrawn after it was linked to crippling side effects in new-born babies.

 

At least 2,000 babies in the UK were born with deformities brought about directly by Thalidomide, and more than half
of them died within their first 
year.

Clare Daly TD

Posted by Carmel Daly McDonnell on January 7, 2014 at 2:10 PM Comments comments (0)

Written answers

Tuesday, 16 April 2013

 

What are written answers?

Department of Health

Thalidomide Victims Compensation

 

All Written Answers on 16 Apr 2013

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Photo of Eoghan MurphyEoghan Murphy (Dublin South East, Fine Gael)

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To ask the Minister for Health if he has had any recent meetings with the Irish Thalidomide Association or the Irish Thalidomide Survivors Society and if he will provide an update of the outcomes of those meetings [16146/13]

Photo of Nicky McFaddenNicky McFadden (Longford-Westmeath, Fine Gael)

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To ask the Minister for Health if he has met with the Irish Thalidomide Association and the Irish Thalidomide Survivors Society; if he will provide an update on those meetings; the progress being made; and if he will make a statement on the matter. [16180/13]

Photo of Maureen O'SullivanMaureen O'Sullivan (Dublin Central, Independent)

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To ask the Minister for Health the date on which he will meet with the Irish Thalidomide Survivors' Society to discuss the needs of the 32 survivors for an open care package as in other countries; and if he will consider the German model of care and address the individual specific needs of the survivors [16406/13]

Photo of Michael Healy-RaeMichael Healy-Rae (Kerry South, Independent)

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To ask the Minister for Health in respect of the Irish Thalidomide Survivor’s Society, if he will reinstate the previous commitments that were given in 1975 and guarantee this commitment on moral grounds; if he will meet with the group to discuss in depth precisely what his health care package entails; and if he will make a statement on the matter. [16449/13]

Photo of Michael Healy-RaeMichael Healy-Rae (Kerry South, Independent)

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To ask the Minister for Health in respect of the Irish Thalidomide Survivor’s Society with regard to car adaptations, the proposals he has to deal with the small amount of people who actually need assistance with regard to car adaptations; and if he will make a statement on the matter. [16450/13]

Photo of Finian McGrathFinian McGrath (Dublin North Central, Independent)

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To ask the Minister for Health if he will meet with the Irish Thalidomide Survivors' Society as a matter of priority [16494/13]

Photo of Clare DalyClare Daly (Dublin North, Socialist Party)

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To ask the Minister for Health if he will convene a meeting with the Department of Social Protection, the Department of Environment, Community and Local Government and the Thalidomide Survivors groups as a matter of urgency to prepare a comprehensive plan for the delivery of a care package for the 32 Thalidomide survivors which honours the commitment given to their parents in 1975 [16655/13]

Photo of Clare DalyClare Daly (Dublin North, Socialist Party)

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To ask the Minister for Health if he will ensure that funds are ringfenced to meet the needs of the 32 Thalidomide survivors, including access to car and dwelling adapations, personal assistances, and any other measures necessary in a comprehensive care package [16658/13]

Photo of Willie PenroseWillie Penrose (Longford-Westmeath, Labour)

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To ask the Minister for Health the steps that are being taken to deliver upon the commitment in the Programme for Government, to ensure that justice is delivered in respect of survivors of thalidomide and thereby enable them to achieve access to the appropriate medical services and appropriate compensation in accordance with all other citizens who suffer personal injury are entitled to; and if he will make a statement on the matter. [17203/13]

Photo of James ReillyJames Reilly (Minister, Department of Health; Dublin North, Fine Gael)

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I propose to take Questions Nos. 1138, 1141, 1176, 1182, 1183, 1191, 1214, 1215 and 1295 together.

The Programme for Government includes a commitment to reopen discussions with Irish survivors of thalidomide. I met with both representative organisations in July 2011 and have been in correspondence since.

Given the challenges that persist for each individual, this Government's aim is to address the health and personal social care needs of thalidomide survivors living in Ireland. I have stated that I am willing to enter into discussions about a health care package on a non-statutory basis; an ex-gratia payment having regard to current financial circumstances; and a statement to the Dáil recognising the challenges faced by survivors.

The Irish Thalidomide Association announced publicly in 2012 that it had ceased talks with the Government. The Association's legal advisor has initiated personal injuries claims against the manufacturer and distributors of the Thalidomide drug and the State.

The Irish Thalidomide Survivors Society is seeking, amongst other things, an independent agency with ring fenced funding to provide for a statutory package to provide for their needs including health and personal services, housing adaptations, heating, transport and clothing. I am not in a position to meet the demands of the Society. I would also point out that each Irish thalidomide survivor has a medical card and it is open to each individual to apply for the numerous public supports available to people with a disability provided by other Departments such as housing adaptation grants, disabled drivers tax concessions and disability allowance. However, I have asked the Society to consider, in good faith, proceeding with a Health Care Protocol which envisaged appointing and training a multi-disciplinary team, arranging a multi-disciplinary health evaluation, identifying and documenting their health care needs/issues and developing plans to address those needs. The Society are unwilling to proceed on that basis.

There are currently 32 Irish Thalidomide survivors. Each survivor received lump sum payments from a German Foundation and the Irish Government in the early 1970s. In 1975 the lump-sums paid by the Irish Government ranged from €6,400 to €21,000. In addition, each survivor receives on-going monthly payments from both the German Foundation and the Irish Government. Combining the Irish and German payments, most individuals receive over €2,500 per month, or €575 per week tax free.

http://www.kildarestreet.com/wrans/?id=2013-04-16a.2759

Clare Daly TD

Posted by Carmel Daly McDonnell on January 7, 2014 at 2:05 PM Comments comments (0)

Written answers

Tuesday, 30 April 2013

 

What are written answers?

Department of Health

Thalidomide Victims Compensation

 

All Written Answers on 30 Apr 2013

« Previous answerNext answer »

 

Photo of Clare DalyClare Daly (Dublin North, Socialist Party)

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510. To ask the Minister for Health if he will convene a meeting with the Department of Social Protection, his Department and the Thalidomide Survivors groups as a matter of urgency to prepare a comprehensive plan for the delivery of a care package for the 32 Thalidomide survivors which honours the commitment given to their parents in 1975. [19920/13]

Photo of Clare DalyClare Daly (Dublin North, Socialist Party)

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511. To ask the Minister for Health if he will ensure that funds are ringfenced to meet the needs of the 32 Thalidomide survivors, including access to car and dwelling adaptations, personal assistances, and any other measures necessary in a comprehensive care package. [19921/13]

Photo of Brian StanleyBrian Stanley (Laois-Offaly, Sinn Fein)

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583. To ask the Minister for Health the plans that are in place to assist the 32 Thalidomide victims with compensation; if he will meet a delegation representing them to discuss their concerns; and if he will make a statement on the matter. [20366/13]

Photo of Kathleen LynchKathleen Lynch (Cork North Central, Labour)

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I propose to take Questions Nos. 510, 511 and 583 together.

31 Irish thalidomide survivors currently receive financial support from the State. This support is in addition to the financial support they receive from the German foundation set up to support people affected by the German made drug.

Each Irish survivor received lump sum payments from the German Foundation and the Irish Government in the early 1970s. In 1975 the lump-sums paid by the Irish Government ranged from €6,400 to €21,000. In addition, each survivor receives on-going monthly payments from both the German foundation and the Irish Government. Combining the Irish and German payments, most individuals receive over €2,500 per month, or €575 per week tax free.

The Programme for Government includes a commitment to reopen discussions with Irish survivors of thalidomide. I met with both representative organisations in July 2011 and have been in correspondence since.

Given the challenges that persist for each individual, this Government's aim is to address the health and personal social care needs of thalidomide survivors living in Ireland. I have stated that I am willing to enter into discussions about a health care package on a non-statutory basis; an ex-gratia payment having regard to current financial circumstances; and a statement to the Dáil recognising the challenges faced by survivors.

The Irish Thalidomide Association announced publicly in 2012 that it had ceased talks with the Government. The Association's legal advisor has initiated personal injuries claims against the manufacturer and distributors of the thalidomide drug and the State.

I have asked the Irish Thalidomide Survivors Society to consider, in good faith, proceeding with a Health Care Protocol which envisaged appointing and training a multi-disciplinary team, arranging a multi-disciplinary health evaluation, identifying and documenting each individual's healthcare needs/issues and developing plans to address those needs. The team is planning to attend a centre of excellence in Sweden next month. The Society is unwilling to proceed on this basis and is seeking commitments to additional supports I am not in a position to provide. Each Irish thalidomide survivor has a medical card and it is open to each individual to apply for the numerous public supports available to people with a disability provided by other Departments such as housing adaptation grants, disabled drivers tax concessions and disability allowance.

http://www.kildarestreet.com/wrans/?id=2013-04-30a.1213

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Clare Daly TD

Posted by Carmel Daly McDonnell on January 7, 2014 at 2:00 PM Comments comments (0)

Published on Dec 18, 2013

 

Clare raised the issue of recent revelations about the state’s knowledge of the side effects of the drug Thalidomide and the decision not to issue a public warning and how it impacts on the survivors negotiations for compensation with the current government. Watch video below:

 

http://www.youtube.com/watch?v=g_0maAxDS5M&feature=youtu.be

 

Thalidomide Victims Compensation (Continued)

Wednesday, 18 December 2013

Dáil Éireann Debate

Unrevised

 

First Page Previous Page Page of 95 Next Page Last Page

(Speaker Continuing)

 

[Deputy Clare Daly: Information on Clare Daly Zoom on Clare Daly] Thalidomide was a drug marketed for morning sickness but problems arose with it which led to the foetus in many instances being malformed and the children being born with serious lifelong physical defects. The German Government and chemical company involved brought forward a compensation package years later. I am aware the programme for Government gave a commitment to reopen discussions regarding this compensation programme. Many of the survivors, of which there are 32, are seeking an enhanced care package with access to adapted housing, cars and other services. They are saying that the spirit of the agreement entered into with their parents in the 1970s should be honoured.

 

Discussions between them and the Department broke down earlier in the year. The Minister for Health said they had broken down on the basis of legal advice to the Government that the State does not have legal liability for injuries suffered by the survivors of the drug. The recent revelations from documents from the Department cast doubt on the accuracy of the Minister’s statement, however. If the State was well aware of the concerns about the drug in 1959 but failed to take any action until the middle of 1962, then several of these survivors and victims of thalidomide have a legitimate case to argue the State is wholly responsible as it had possession of knowledge with which it refused to deal.

 

At the time, the drug company involved had withdrawn the drug from the market. Some of the quotes from the Irish State authorities at the time in the recently disclosed documents seem quite callous. Basically, they said because the drug companies had withdrawn it, they need not worry about it. This was inappropriate. Another document reveals, “It was felt that any supplies which had already reached domestic stocks presented a special problem that could only be tackled by public announcements. This step was regarded as undesirable. It was thought that even if it were taken, it would prove largely ineffective”. Sadly, we will never know because the public announcement was not made. Instead, we had a confidential circular issued with an inadequate recall of the drug.

 

These documents alter the balance of forces in the Government’s position on the negotiations with the thalidomide survivors. The points made by the Minister in July that the State is not responsible have been shown up to be not the case. I hope the Government will take this into account in addressing the outstanding concerns of the victims of thalidomide for adequate compensation to meet their needs.

 

Deputy Kathleen Lynch: Information on Kathleen Lynch Zoom on Kathleen Lynch Before I give the official answer, it often strikes me that it can come across as clinical and simply giving the facts. Everyone in this State knows of a person with a difficulty from thalidomide. I accept sympathy does not pay the bills either. It is also not a case of the Government refusing to open to negotiations.

 

I am pleased to take this opportunity to outline the current position on the Irish survivors of thalidomide. When one thinks there are only 32 survivors, who would not want to deal with this problem?

 

Lest there be any misunderstanding, this Government did not suppress any information. The document referred to in recent media reports is a document dating from 1974 prepared by officials in the Department of Health for the then Minister. This document, among other matters, outlines a position adopted in 1962. The distributors of thalidomide in Ireland suspended distribution of the drug in December 1961 and then withdrew stocks of the drug in January 1962. It was decided at that time not to issue a public statement. The document, however, outlines that it was decided in June 1962 that the most effective step to take to deal with the issue was to circulate all chief medical officers to ensure all doctors, chemists and hospitals in their area would secure the return of any unused stocks. As Deputy Clare Daly said, how were we supposed to get to women who had it in the medicine cabinet already?

 

It is important to bear in mind that action taken in 1962 should not be judged or reviewed applying the rules or regimes applicable today. I am sure we would not do today what was done then. It would seem the position in Ireland did not materially differ from the position in other European countries at the time. Few countries then had systematic controls for licensing drugs and it was in the light of the thalidomide experience that most countries developed such arrangements. This was reiterated by one of the thalidomide survivors on the recent "Prime Time" programme on the matter. The document states: "It is of interest to note that the attitude of the British authorities was no different.” This is not an excuse.

 

This document was released by the Department of Health in 2010 to solicitors representing Irish survivors of thalidomide, along with all other records available to the Department relating to the period in question. The Government’s focus is to address issues which remain and the programme for Government includes a commitment to reopen discussions with Irish survivors of thalidomide. Given the challenges that persist for each individual, the Government's aim is to address the health and personal social care needs of thalidomide survivors living in Ireland.

 

There are 31 Irish survivors of thalidomide receiving tax free payments from the Department of Health. A German foundation also pays Irish survivors of thalidomide, payments which are also tax free. Since 1 August 2013, the German foundation has substantially increased its monthly payments to Irish thalidomide survivors. In addition, 15 survivors who accepted it at the time received a once-off payment from the Department of Health in July 2013 of €62,500.

 

Up to 22 of the Irish survivors of thalidomide have initiated personal injury claims against the State. A mediation conference is proposed for these claims. It is hoped this can proceed early in the new year. Both I and the Minister for Health are determined to ensure equality of treatment for all Irish survivors of thalidomide. The Government will continue to work to find a way forward to progress matters for Irish survivors through discussions. All Members are anxious this matter is resolved as quickly as possible.

 

Deputy Clare Daly: Information on Clare Daly Zoom on Clare Daly While dealing with 32 survivors might seem a small figure, this process has trundled on for decades, over the lifetimes of these victims. The State did not consciously suppress the 1974 documentation but what is revealed is the extent of knowledge which was not shared. Had it been shared, lives could have been changed. In that sense, the State responded inappropriately and is culpable to a degree. The programme for Government accepts State culpability and agrees on the provision of an adequate compensation and care package. The necessity for a proper package is the most persistent demand from the survivors. When we raised it previously, the Minister for Health has said as they get a medical card, they can apply for housing adaptation grants and so forth. They have applied for many of these services but not received them. They want these services to be ring-fenced and guaranteed as a right to people to whom an injustice has been done. We now have the proof that there was knowledge about the dangers of the drug, a better response could have saved many. Hopefully, we have learned from this. The State’s response in 1962, through a confidential memorandum to the medical profession, was wholly inadequate. At least this would not happen now. Transparency and knowledge is a good development that should be encouraged rather than authorities trying to keep a lid on matters.

 

Deputy Kathleen Lynch: Information on Kathleen Lynch Zoom on Kathleen Lynch We are all singing from the same hymn sheet in that knowledge and transparency is what will protect us all. We already have care packages in place for hepatitis C sufferers so we know what is needed in this case. It is a matter of agreement but there is some disagreement between some of the group themselves. There is a solution and we just have to keep trying to find it.


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Gr?nenthal Gr?nenthal announces appeal against Spanish thalidomide judgment

Posted by Carmel Daly McDonnell on January 7, 2014 at 12:05 PM Comments comments (0)

Grünenthal kündigt Berufung gegen spanisches Contergan-Urteil an

aachener-zeitung.de

Der wegen des Contergan-Arzneimittelskandals in Spanien zu Entschädigungszahlungen verurteilte deutsche Pharma-Konzern

Grünenthal Grünenthal announces appeal against Spanish thalidomide judgment - Grünenthal wants to go against the judgment in appeal. The account of the thalidomide drug scandal of German pharmaceutical company in Spain to compensation payments was condemned

 

Among other things, because the plaintiffs had not provided any evidence for their lawsuit claim, it said in a statement released by the company on Friday in Madrid. A fair judgment is impossible after half a century. In addition, the affected have already received "substantial financial support", it said.

 

Grünenthal announced its appeal against Spanish thalidomide judgment. On 20th November, the company was accused of "negligent behaviour”, by the Presiding Judge Gemma Susana Fernández Díaz.

 

The company had sold the drug Thalidomide in Spain, even though they were aware of the harmfulness.

 

About 180 victims had demanded compensation totalling 204 million euro in the process in Madrid. The court granted the petition in the first instance in part. It ordered the company pay some of those affected for each percentage point of disability a compensation of 20,000 euro.

 

The spokesperson of Grünenthal in Spain, Rosa Montero, stated "all of Grünenthal’s product containing thalidomide- that affected people there are established and proven and received assistance. Grünenthal announced its appeal against Spanish thalidomide judgment - We cannot understand therefore why Spanish plaintiffs who claim they were affected by thalidomide, disregard their awareness and sue Grünenthal for damages. "

 

The sleeping and sedative thalidomide was the late 1950s, triggered one of the biggest drug scandals. Worldwide 10 000 children came with severe physical deformities, including 5,000 in Germany.

 

Thalidomide allegedly sold in Spain after ban

Posted by Carmel Daly McDonnell on May 10, 2013 at 7:45 PM Comments comments (0)

http://www.bignewsnetwork.com/index.php/sid/214387809/scat/4b6cc4f8ec2f54f6

Thalidomide allegedly sold in Spain after ban

Euro News Thursday 9th May, 2013

 

 

The morning sickness drug thalidomide, which caused severe birth defects in babies around the world, continued being sold in Spain after being pulled in other countries – according to a group representing victims.

 

The drug, which was used to treat nausea in early pregnancy in the 1950’s and 1960’s, was withdrawn in 1961. It was found to be linked to birth defects which caused children to be born with shortened arms and legs, or no limbs at all.

 

However, the Spanish Association of Thalidomide Victims told reporters in Madrid on Wednesday that it continued being distributed in Spain for up to six months after the ban, up to May 1962.

 

The association has sued the drug manufacturer, Gruenenthal, for 208 million euros. The company insists that it pulled the drug at the same time as in Germany.


1959 ? 2013 The Thalidomide Scandal

Posted by Carmel Daly McDonnell on January 23, 2013 at 2:05 PM Comments comments (0)

The danger of inadequate drug testing and the lack of a drug regulatory process were brought into public focus in the late 1960’s by the by the horrific maiming of children from the drug thalidomide. Moreover, the thalidomide scandal saved this horrific phenomenon from happening again and spared the live of thousands of children who were born after this time. One of the most chilling aspects of this scandalous narrative is the assertion that “in the immediate post-war years, convicted Nazis, and mass murderers who had practiced their science in notorious death camps, ended up procuring employment at a high level within the company Chemie Grünenthal (which made a financial killing, producing thalidomide). Dr. Heinrich Muckter Otto Ambros Two of the most reprehensible of these, were Otto Ambros and Heinrich Muckter. Otto Ambros, was the inventor of sarin (the nerve gas), and was also convicted of mass murder at the Nuremburg trials but subsequently freed and Heinrich Mückters who had a colourful war career which included medical experiments on concentration camp prisoners. Following the war, he invented thalidomide, receiving huge bonuses for rushing the drug to market in the 1950s. In addition, Mückter shared in the profits of the patent of thalidomide. Together and alongside others, they brought knowledge and skills in experiments that no civilized society would ever condone. It is no small irony or surprise, that the outcome of this inconceivable narrative, along with this mixture of people, evolved the thalidomide scandal. Chemie Grünenthal first manufactured thalidomide in West Germany in 1953. Thalidomide was hailed as a "wonder drug" providing a "safe and sound sleep". Globally Thalidomide was as one of the most successful prescription drugs ever marketed. It was marketed and distributed throughout the British Isles, Australia, New Zealand Japan and Europe under many different names. It is estimated; approximately 20,000 foetuses in 46 countries were born with birth defects worldwide. Although, the official casualty figures in many of the poorer countries like Brazil, India and Africa could never precisely be assessed. The first child afflicted by thalidomide was born on December 25th, 1956 to an of employee of Chemie Grünenthal’s The effects of thalidomide on the children were severe deformities; facial disfigurements, severe to mild intellectual impairment, internal organ damage, deafness, blindness, missing legs, arms, fingers, and ears. Nevertheless, for the majority of these babies, they were afflicted with a mixture of more than three of these deformities. In view of the fact, Chemie Grünenthal had performed all the basic required animal safety-tests. On the18th December 1970, after two years and seven months of trial, the courts were forced to find the manufacturers of Thalidomide not guilty; of consciously marketing a harmful drug. Dr Mückters by this time, the director of the scientific laboratory of Chemie Grünenthal disclosed at the trial, that a great deal of the company's records were destroyed - or had ‘disappeared’ during 1959... It took a long time and pressure, from our parents to finally get the Irish government represent us. In September 1959 the use of Contergan (Thalidomide) was stopped in German Hospitals because of severe reactions. Chemie Grünenthal resisted moves to withdraw the product despite a growing number of reported deformities. On the 27th of November 1961 Thalidomide was banned globally for any treatment concerning pregnant women and taken off the market. (Yes, that excluded Ireland). In Ireland, in 1959 under the auspices of its Department of Health, (Thalidomide) ASAK Softenon, Entero-Sediv, and some others were approved for marketing and sale. However, despite the global ban in November 1961 and despite overwhelming universal evidence of its particular dangers, drugs containing thalidomide in Ireland were not fully withdrawn until mid to late 1962. Moreover, in November 1961 the department of health send letters to Irish doctors to stop prescribing Thalidomide. Yet thalidomide officially continued to exist as a over the counter non-prescription drug in Irish pharmacies for a further seven to ten months – yet Dr John O’Connell, a one-time Health Minister, reported that three years after thalidomide’s withdrawal, he was able to buy it in a pharmacy in Ireland. In 1973 US presidential candidate Mr. Ralph Nader wrote a strongly worded letter to the Taoiseach of the time, accusing the Government of twice neglecting its duty to protect the health and safety of its citizens. Mr. Nader claimed the Government knew definitively that the drug was dangerous in 1961 yet waited almost seven months before telling the public the drug was banned. Mr. Nader went on to say. "Indeed, so pervasive was the Government's silence that media of the time held back the story in January 1962, deciding to wait until the Government broke the story, immediate steps should have taken been to remove the drug from sale and distribution and to warn citizens who might have previously obtained the drug against using it". Finally, Mr. Nader wrote, "We are dismayed at the Government's strange unwillingness to act on behalf of these Irish citizens in the settlement negotiations". He called for "vigorous intervention" to ensure that the tragedy would not be compounded "by a tragically meagre settlement". The Taoiseach's private secretary did acknowledge the letter, but there is no evidence of its contents ever been challenged by the Taoiseach or his officials. In 1975 after a decade of intense lobbying by the parents, the Irish Government entered into a commitment to provide: ”compensation and services and aids necessitated by our disabilities in order for us to lead as normal a life as possible”. In particular, Tánaiste and Minister for Health Mr. Brendan Corish, on January 9th, 1975. Our parents believed the Irish Government would deliver on this promise. Thirty-eight years on, we protest that the treatment we now receive is inadequate to keep even the basic essence of that agreement. Due to pressure from Irish thalidomider organisations, in April 2010 the state claims agency published a report to emphasise lack of responsibility on their part. (In reality due to time lapsed and statutes bared this is possibly true.). However, morally there is just cause for debate. The report was commissioned by the then Minister for health, quoting the following; “In relation to the Thalidomide survivors, the events giving rise to the survivors ‘injuries, namely the innocent taking of Thalidomide preparations by their mothers, occurred between the years 1958 and 1962. Moreover, it is notable that the Public Prosecutor’s Office in Aachen received its first complaints in 1961”... Followed by; “The National Drugs Advisory Board (predecessor to the Irish Medicines Board) was only established in 1966”. In addition; “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 British government claimed the same level of liability as our own, yet they morally stepped up to the plate. On Thursday, December 20, 2012, The British government announced, “over the next 10 years, a grant will given to the British survivors in the region of £80 million - it will be paid on an annual basis, rising each year in line with inflation”. In addition, in 2009 – The British Government agrees a £20 million grant, to be paid by the Department of Health to the Thalidomide Trust over three years, SHAME ON YOU IRELAND. From 2009 to today, the department of health has repeatedly released the following statement to the public. Issued On September 9th 2012 Minister Reilly stated, “I have previously indicated that I am willing to enter into discussions about a financial gesture of goodwill towards Irish survivors of thalidomide”. … From 2007 to today, The Irish Thalidomide Survivors Society has strived to do exactly that and maintain this relationship even at the cost of accelerated pain and further debilitation of their members. ITSS felt to have a cooperative relationship with government outside of the public eye, was a positive and constructive way forward. Now in 2013 we have gained very little ground with our compliant approach. The Irish thalidomide survivors have written to the minister three times and have has numerous representations from local TD’S to Minister Reilly regarding proposed care plan and requests for a meeting with Minister Reilly, to no avail. Minister Reilly made it clear he “favours a non-statutory solution”. He went on to say, “he requested ITSS, in good faith, to continue to engage with the HSE in developing and participating in a health care assessment process”. The proposed care plan offered by Minister Riley in its present form is no different from that of any other disabled person in Ireland; including budgetary status. There is no special provision of security in recognition of our unique requirements or circumstance as Thalidomide Survivors within his proposal. Minister Riley is offering what we as disabled citizens of Ireland are entitled to anyway. Minister Riley claims that the Care plan in its entirety is not in his remit. We would appeal to Government and Minister Riley to deliver their promise. To stop deceiving the public and TD’S with false intention of a Care plan and ex-gratia payments. We would appeal to Minister Riley to negotiate, some form of statutory agreement, so to have a sense of security and not find ourselves in the same predicament in another 10 years. Our request is reasonable. We are 32 persons, government know the level of our lobbing power and it would seem they deem it morel to take full and plenty advantage of the fact. We refuse to believe it is not possible to configure a statutory agreement without liability concerns. The British Government did. If this catastrophe happened in these times, there would be no question to the future the thalidomide survivors. In addition, because this tragedy happened in a time when no one could fight hierarchy and troubled mothers were too exhausted and beaten to fight, the survivors of thalidomide were left to suffer in silence. From that time to this, the mere mention of the word thalidomide causes doors to slam tightly. It is a word that has always created fear, embarrassment, and trepidation of liability. We will never know the truth the about thalidomide scandal, from the Nazis to its regulatory process and distribution. However, what we do know is this was a man-invoked injury to thousands of defenceless babies and their mothers. Moreover, nobody will take the responsibility for the damaged caused in Ireland. My name is Carmel Daly McDonnell and I am a thalidomide survivor and spokesperson for the Irish Thalidomide Society. My mother bought thalidomide as an over the counter non-prescription drug after the ban. My health is getting worse and I am terrified. I cannot fight any more. I am too old, too tired. My husband and I cannot spend the rest of our life’s worrying about the future. I am worried all the time.

UK thalidomide victims to get 80m equal to ?98m

Posted by Carmel Daly McDonnell on December 22, 2012 at 2:35 PM Comments comments (0)

http://www.irishtimes.com/newspaper/breaking/2012/1220/breaking26.html The British government today announced a new 10-year grant of about £80 million (€98 million) to the Thalidomide Trust to aid the health needs of survivors. Health minister Norman Lamb told MP's in the Commons the new decade-long grant would continue the support begun by the three-year pilot scheme announced by the last administration. “I should like to report to the House on a new 10-year grant to the Thalidomide Trust to help them find more personalised ways of meeting the health needs of Thalidomide survivors.” The current three-year grant, which comes to an end in March 2013, was introduced by the previous government as a pilot scheme. He added: “This government is committed to improving outcomes for all disabled people and supporting them to live independent lives. This is why we are pleased to be able to continue to support the excellent work begun by the pilot scheme through this 10-year commitment. “Over the next 10 years, the grant will be in the region of £80 million - it will be paid on an annual basis, rising each year in line with inflation.” Thalidomide was a drug used to combat morning sickness but in some cases caused deformities in developing fetuses during the 1950s and 1960s.

Worst drug scandal of all time

Posted by Carmel Daly McDonnell on September 16, 2012 at 1:35 PM Comments comments (0)

Worst drug scandal of all time By Roger Williams and Jonathan Stone Saturday, September 15, 2012 Roger Williams and Jonathan Stone on recent revelations of Nazi connections with the German chemical company which made the so-called wonderdrug thalidomide THE girl’s head is flung back, her mouth open in a cry of pain. She doesn’t feel anything. She is a bronze sculpture symbolising the suffering of 10,000 or more children around the world born in the 1950s and ’60s who did suffer greatly, and still do, as adults. Because their mothers ingested the notorious drug thalidomide, they were born without legs or arms or with foreshortened limbs like The Sick Child cast in bronze. Some were born deaf and blind; some with curved spines, or with heart and brain damage. The over-the-counter tranquiliser was hailed as a wonder drug when released in the late 1950s. Its maker, Chemie Grünenthal, a small German company relatively new to pharmacology, marketed it aggressively in 46 countries with the guarantee that it could be "given with complete safety to pregnant women and nursing mothers without any adverse effect on mother and child". During the four years it was on the market, doctors prescribed it as a non-toxic antidote to morning sickness and sleeplessness — and it sold by the millions. For nearly half a century, the privately-owned company was silent and secretive about the epic tragedy it created while earning a vast profit. Even before its release, the wife of an employee gave birth to a baby without ears, but Chemie Grünenthal ignored the warning. Within two years, an estimated million people in West Germany were taking the drug on a daily basis. But by early 1959, reports started to surface that the drug was toxic, with scores of adults suffering from peripheral neuritis damaging the nervous system. As profits kept rolling in, however, Chemie Grünenthal suppressed that information, bribing doctors and pressuring critics and medical journals for years. Even after an Australian doctor connected thalidomide with deformed births in 1961, it took four months for the company to withdraw the drug. By then, it is estimated to have affected 100,000 pregnant women, causing at least 90,000 miscarriages and thousands of deformities to babies. Despite the overwhelming evidence that thalidomide caused miscarriages and birth defects, Chemie Grünenthal for years fought to resist paying the necessary compensation required for a lifetime of care — and still does. Victims say the company’s payments have been derisory and far from enough to pay for the expensive care needed by those severely deformed. In 1970 the company agreed to pay about €25m into a fund for the victims and was given permanent legal immunity in Germany in return. When money in the fund ran out, the German government made compensation payments, and in 2009 Grünenthal replenished the fund with a one-off endowment of €55m. (Elsewhere in the world, there are still pending claims and class-action suits.) Beyond monetary restitution, victims and their families had to wait more than five decades for an apology. But on Aug 31 this year, the company’s new CEO, Harald Stock, stepped outside its headquarters in Stolberg to unveil the bronze sculpture of the suffering girl and to apologise to all the victims, heartbroken families, and survivors. His sincerity was manifest. "We ask for forgiveness that for nearly 50 years we didn’t find a way of reaching out to you from human being to human being," Stock said. "We ask that you regard our long silence as a sign of the shock that your fate caused in us." With a go-ahead smile and close-shaven head, the Freiburg-born executive had arrived in Jan 2009, following the retirement of Sebastian Wirtz, the sixth generation to head the family firm. The "we" in his plea for forgiveness referred to the company. But his announcement in Stolberg brought no message from the Wirtz family — or anybody else still living who presided over thalidomide’s silent years. And victims were upset because the company’s contrition is still not matched in the level of compensation. It is increasingly clear that, in the immediate postwar years, a rogues’ gallery of wanted and convicted Nazis, mass murderers who had practised their science in notorious death camps, ended up working at Grünenthal, some of them directly involved in the development of thalidomide. What they had to offer was knowledge and skills developed in experiments that no civilised society would ever condone. It was in this company of men, indifferent to suffering and believers in a wretched philosophy that life is cheap, that thalidomide was developed and produced. Stolberg is Wirtz town, a clutch of attractive buildings that sit snug in a green valley around a medieval castle on the eastern outskirts of Aachen in North Rhine–Westphalia. Its prosperous air is due in large part to the family firm founded by Andreas Augustus Wirtz in the 19th century. Devoutly Catholic, the Wirtz family has for decades been the pillar of Aachen society, and their philanthropy has included a new roof on the city’s imperial cathedral, built by Charlemagne in 786. Today the company has a global reach, with affiliates in 26 countries. It employs 4,200 people worldwide and has revenues approaching $1.3bn, mostly from painkillers. Products from its perfume subsidiary, Mäurer & Wirtz, include 4711 and Tabac, while the Dalli-Werke subsidiary concentrates on household cleaning products. Many who live in the town rely on the company for their livelihood; some have been employed there for many years. Men and women who worked as child slave labourers for the company during the Second World War carried on clocking in well into middle age, reluctant to speak about the company’s past. Dr Mückter, chief of research and production, was enriched by thalidomide sales and helped cover up the drug’s horrific effects. At Nuremberg, mass murderer Otto Ambros was sentenced to eight years in prison. He came to head the company’s advisory committee. At the outbreak of war in 1939, the family-owned company was in the hands of Hermann Wirtz, aided by his twin brother, Alfred, an engineer and fellow Nazi party member. The company benefited from Hitler’s Aryanisation programme by reportedly taking over two Jewish-owned companies, one of which made the Tabac range it still sells to this day. At war’s end, the business, which until then had focused mostly on soap, perfumes, and cleaning products, found a new direction. In 1946 the Wirtz family set up Chemie Grünenthal, a small-town company that would become a haven for labour-camp scientists and doctors looking for work as it developed drugs desperately needed in the war’s aftermath. The fact that former Nazi Party members were recruited by Grünenthal was not altogether surprising. Major American companies such as Standard Oil and Du Pont maintained commercial links with the Nazi regime during the war and afterward recruited former Nazi scientists, too. Among those invited to Stolberg by Hermann Wirtz was Martin Staemmler, a leading proponent of the Nazi "racial hygiene" programme. Following Germany’s invasion of Poland, he had worked with the SS on its population policy, deciding who should live and who shouldn’t. At Grünenthal, he was head of pathology at the time thalidomide was being sold. Another euthanasia enthusiast was Hans Berger-Prinz, who worked with Hitler’s personal physician, the handsome Karl Brandt, the lead defendant at the so-called doctors’ trial at the Nuremberg war-crimes tribunal. Brandt, Germany’s senior medical official during the war, was executed after he was found guilty of war crimes and crimes against humanity for his involvement in medical experiments and procedures on prisoners and civilians. In 1968, when Grünenthal executives were put on trial and charged with negligent manslaughter and causing grievous bodily harm, deformity, and sickness through the selling of Contergan, the German brand name for thalidomide, Berger-Prinz spoke for the defence. Dr Ernst-Günther Schenck, portrayed in Downfall, the 2004 film about the last days of Hitler, is the only uniformed Nazi known to have found refuge at Grünenthal, though he was not involved in the thalidomide programme. As the inspector of nutrition for the SS, he developed a protein sausage that was tested on 370 prisoners in concentration camps, killing many. He was barred from working as a doctor again in Germany after returning from 10 years as a prisoner of war in the Soviet Union. Grünenthal gave him a job in Aachen. Grünenthal also offered employment to Heinz Baumkötter, an SS hauptsturm-führer, the chief concentration-camp doctor in Mauthausen and Natzweiler-Struthof, and, most notoriously, from 1942 chief medical officer in Sachsenhausen. Sentenced to life imprisonment by the Soviet Union, in 1956 he was, like Schenck, returned to Germany, where he was employed by the Wirtz family at Chemie Grünenthal. Perhaps the best known of Grünenthal’s murderous employees was Otto Ambros. He had been one of the four inventors of the nerve gas sarin. Clearly a brilliant chemist, described as charismatic, even charming, he was Hitler’s adviser on chemical warfare and had direct access to the führer — and committed crimes on a grand scale. As a senior figure in IG Farben, the giant cartel of chemical and pharmaceutical companies involved in numerous war crimes, he set up a forced labour camp at Dyhernfurth to produce nerve gases before creating the monolithic Auschwitz-Monowitz chemical factory to make synthetic rubber and oil. In 1948 Ambros was found guilty at Nuremberg of mass murder and enslavement, and sentenced to eight years in prison. But four years later, he was set free to aid the Cold War research effort, which he did, working for J Peter Grace, Dow Chemical, and the US Army Chemical Corps. Ambros was the chairman of Grünenthal’s advisory committee at the time of the development of thalidomide and was on the board of the company when Contergan was being sold. Having covered up so much of his own past, he could bring his skills to bear in attempts to cover up the trail that led from the production of thalidomide back through its hasty trials to any origins it may have had in the death camps. The central figure at the Grünenthal trial in Aachen was Heinrich Mückter. During the war, his expertise had been anti-typhus work. Outbreaks of the disease in the army made finding a vaccination a high priority. Because typhus culture cannot live outside a body, it was kept alive by injecting it into prisoners. Once injected with the disease, the prisoners could then be used to try out the vaccines to see if they worked, and Mückter’s experiments were reportedly carried out in Auschwitz, Buchenwald, and Grodno as well as at Kraków. Responsible for the deaths of hundreds of prisoners, Mückter was wanted at the end of the war by the Polish authorities, but he was lucky: caught by the Americans, he had the Iron Curtain drawn across his past. And Grünenthal offered him an opportunity to continue his work. As the company’s chief scientist and head of research, Mückter was credited with the development of thalidomide, and given that he earned hefty bonuses on the drug, its initial popularity made him very rich. The "chemical brains" behind thalidomide may have been Mückter’s mentor, Prof Werner Schulemann of Bonn University, according to Martin Johnson, a longtime campaigner at Britain’s Thalidomide Trust. Schulemann had developed the first synthetic antimalarial drug and carried out human experiments in field hospitals and in the camps. But it was Mückter’s work on anti-typhus vaccines trialed in the camps that Johnson believes may provide the link to thalidomide, a line he is pursuing for the book he is writing on the thalidomide story, provisionally titled The Last Nazi War Crime. "I thought I would be ready for publication a long while back," he says, "but new information keeps arriving." But time may be running out in the hunt to find the hard evidence to establish that thalidomide was developed or trialed in the death camps — a hard link that would surely embarrass Grünenthal into giving full compensation to its victims around the world. What is clear, though, is that the recent apology is not enough. Trapped for eternity in her bronze confinement, the statue of the sick child is haunting, her silent scream reminding us of the pain of the thalidomide babies. * ©Newsweek Survivors’ battle continues IRISH thalidomide survivors have begun a legal battle against the State. Survivors of the drug that caused foetal damage and lifelong disabilities said they need extra medical care having reached their 50th birthdays — a milestone they never expected to achieve. The Irish Thalidomide Association (ITA) said it has significant legal concerns relating to the original 1975 compensation arrangement reached with their parents when they were children. The drug was taken by some women and there are 32 surviving Irish children who were born with birth deformities as a result. The group accused Taoiseach Enda Kenny, Tánaiste Eamon Gilmore, and Health Minister James Reilly of "weaseling out" of pre-election promises to meet their demands. In 1975, thalidomide children in Ireland received modest lump sums of between €5,000 and €20,000 and monthly payments of between €32 and €90. The ITA has received legal advice on the fairness, appropriateness, and adequacy of the payments as the offer was never approved by the High Court. ITA chairwoman Maggie Woods, who celebrated her 50th birthday in July, began litigation by lodging her application with the Injuries Board. Ms Woods said the original 1975 settlement was made on the basis survivors would not survive into adulthood, never mind reaching 50. "I am still here fighting for justice," she said. ITA committee member Dr Austin O’Carroll said all discussions with the Government and ITA had ceased. He said ITA had 25 members and all of them would lodge individual applications with the Injuries Board. The ITA last met with Mr Reilly a year ago when he offered a medical review of the needs of the 32 Irish survivors, but not on a statutory basis. Dr O’Carroll said the original settlement never took account of their health deteriorating and was derisory. Irish thalidomide victims also rejected the apology from the German company which invented the drug earlier this year. Grünenthal chief executive Harald Stock said the company had failed to reach out "from person to person" to the victims and their mothers over the past 50 years. "Instead, we have been silent and we are very sorry for that," he said. ITA described the apology as meaningless. "Grünenthal have issued an apology while saying they did no wrong, this is meaningless. The Irish Government have compounded this by refusing both an apology and an acknowledgment of wrongdoing when they failed to have proper regulation of drugs and failed to remove the drug from the shelves for almost a year after all other countries had removed it." The Irish Thalidomide Survivors’ Society also rejected the apology. "An apology will not give us back our childhood, or wrap full-length arms around our children or grandchildren to console them when they are crying. It will not act as a painkiller when we are awake at nights suffering horrendous pain that no painkiller can cure. It cannot give us dignity when our spouses and personal assistants need to help us change our clothes use the toilet or have a bath. "For some it will not allow us to have a normal basic social, lads’, or girls’ night out without a mammoth planning exercise. It will not provide the finances to adapt our homes, our cars or even have our clothes made to suit... It can not get or provide us with wheelchairs or any other helping tools to stop more deterioration in are bodies." An Australian woman whose daughter won a multimillion-dollar settlement in July against Diageo plc, the legal successor to thalidomide’s Australian distributor, said the apology was an insult. "It’s the sort of apology you give when you’re not really sorry," Wendy Rowe said. Lynette Rowe, now 50, was born without arms or legs after her mother took thalidomide for a month while pregnant. Her lawyers said Grünenthal did not contribute to the settlement. LEIGH’S DETERMINATION TO OVERCOME OBSTACLES SHOWS THAT ANYTHING IS POSSIBLE Born without arms or legs due to thalidomide, life could have turned out very differently for Leigh Gath. From growing up in a working class family in Northern Ireland, to life in Texas and back again, her book, Don’t Tell Me I Can’t, shows how true grit can make anything possible. Through support of family and friends, as well as sheer determination, Leigh overcame prejudices, lived through the Troubles, escaped life with an alcoholic husband while raising two children, only to find love again with Eugene Gath, a lecturer at the University of Limerick. Just over a week ago, Leigh, a member of the Leaders Alliance campaign group for people with disabilities, was instrumental in forcing a climbdown by the Government on proposed cuts to allowances and personal assistants. But, as she puts it, "we won the battle fair and square but the war is not over, and if we don’t keep up the pressure, they will target us again for more cuts. We have already lost 15% of these allowances and we simply cannot take any more cuts. There is no wiggle room left." Because she was born in the North, Leigh comes under the British government’s programme for thalidomide survivors. Unlike her husband, Eugene – who also lives with a thalidomide condition — she gets a special health grant, part of a pilot project which she hopes will soon be made permanent. "It makes a great difference," she says. "It doesn’t make me rich or anything, of course, but it does help a lot. What you get depends on the level of your disability. It means that if you need to buy equipment, make modifications to your home, or pay for something extra, the money is there for it." Also in the UK, there is a database of doctors with an extensive knowledge of thalidomide conditions whereas here there are still many GPs unaware of them. She acknowledges, though, that the Irish health service is superior in some ways to that in Britain. "I get extreme neck and shoulder pains, but the HSE provides me with a massage three or four times a year and that keeps me off those drugs. If I lived in the UK I would not be entitled to that and I would probably end up on massive doses of pain killers. "We all have used and abused our bodies just to be able to live. My neck is as it is because when the children were babies I had to pick them up by the front of their clothes with my teeth. I was a single parent at the time, so I didn’t have much choice about it." — Dan Buckley

ITSS STATEMENT

Posted by Carmel Daly McDonnell on September 9, 2012 at 6:30 AM Comments comments (0)

In 1974 on our parents believed the Irish government would deliver the promise made to them to care for our needs for the rest of our lives, that is; “the government has been confirmed to see that the children are provided with all the services and aids necessitated by their handicaps in order for them to lead as normal a life as possible “. within two years of the making of this agreement. Our parents found themselves right back to when they started, fighting tooth and nail to get the smallest of appliances. our parents dropped any talk of pursuing count processing basis-ed on this promise, as they were exhausted trying to deal with helping us through our problems and needs as well as fighting with companies and government. There is no way round the statutory issue.


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EU talks in campaign for drug settlement

Published on the

08 January

2014

00:01

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A THALIDOMIDE victim from Yorkshire is to hold talks with the EU Health Commissioner as he steps up his fight for justice against the German pharmaceutical company which developed the anti-morning sickness drug.

 

Guy Tweedy and four colleagues – who are representing the UK’s 469 remaining Thalidomiders – have secured a meeting on Friday with Antonio Borges, in the hope of brokering a compensation talks with Grunenthal and the German government.

 

The meeting comes after a concerted lobbying campaign of UK MEPs by leading Thalidomide victims, who aim to secure a financial settlement from Grunenthal for UK, Swedish, Canadian and Australian victims of the “wonder drug”.

 

Mr Tweedy, 51, a businessman from Harrogate, said: “Over the last few months we have had a series of meetings with UK MEPs and, thanks to their support of our campaign, we now have a face to face meeting with Mr Borges.

 

“We hope we will be able to persuade him to use his influence to mediate a solution that will lead to us sitting down with representatives of both Grunenthal and the German government, and, ultimately, receiving compensation for the lasting damage their drug has done.”

 

Mr Tweedy, who was born with shortened arms and fingers fused together, added: “In 1971, the German government passed a law protecting Grunenthal from anyone taking legal action against it in relation to Thalidomide.

 

“However, the company needs to own up to its responsibilities and help those who have been living with the side effects of 
Thalidomide for more than 50 years.”

 

Thalidomide was administered to pregnant women to combat the effects of morning sickness, however, in May 1962 the drug was withdrawn after it was linked to crippling side effects in new-born babies.

 

At least 2,000 babies in the UK were born with deformities brought about directly by Thalidomide, and more than half
of them died within their first 
year.


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