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Corporate Watch - Glaxo And Myodil Toxic drugs are good for you

#1 User is offline   gaffa09 

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Posted 03 July 2004 - 09:47 PM

http://www.corporate...e10/cw10f6.html

Well worth reading

Magazine Issue 10 - Spring 2000

Toxic drugs are good for you

This January, Glaxo Wellcome announced a merger with SmithKline Beecham. This will ensure its place as the biggest company in the UK, and one of the world�s leading pharmaceutical companies, controlling approximately 7.4% of the market . Glaxo has exercised considerable power over health provision in the UK since the company was formed in 1929. But its behaviour has not always been in the best interests of those consuming its drugs. Robert [redacted] of the Myodil Action Group reports below how � for forty years � Glaxo knowingly sold a toxic drug to tens of thousands of people.

Between 1946 and 1988 Glaxo made and sold a spinal x-ray contrast medium called Myodil. Injected into the spinal canal in order to show up problems on x-rays, the drug was sold in approximately fifty countries including the UK. But Myodil, an oil-based yellow dye, was far from harmless itself � once injected into the spine it has been shown to cause a disease called Adhesive Arachnoiditis .

This causes chronic, intractable pain and is characterised by the inflammation of one of the three membranes surrounding the brain and spinal cord. The inflammation results in thickening of the middle membrane, called the arachnoid, causing it to adhere to structures near it. Finally the spinal cord nerves clump against the inner membrane and impair the flow of the spinal fluid. The chronic pain which sufferers have to endure is caused by inflammation and nerve atrophy. There is no cure and no treatment. Accounts of the number of people who have developed Adhesive Arachnoiditis due to Myodil vary between different sources , but it is likely to be tens of thousands.

Glaxo must have known that Myodil was toxic when it was first released onto the market in 1946, since the company was under an obligation to gather reports of adverse reactions to its drugs. By that time many studies had already been published which showed this.

Glaxo Laboratories Limited was incorporated on 28th May 1929 to deal in pharmaceutical drugs, with only one director, Alec Nathan. Nathan formed the company when it was discovered that the dried baby food �Glaxo� was the cause of rickets in children. The first product Glaxo Laboratories Ltd produced was therefore Ostelin, a vitamin D concentrate to replace vitamins that were destroyed in the food drying process.

Glaxo realised that to manufacture a medicinal product is one thing, to sell the manufactured product profitably was another. It had to have influence in the local health departments and infirmaries. Glaxo advertised its products through medical and nursing publications and by writing directly to a selected group of doctors. Sales of the company's products grew and Glaxo, previously familiar to only a limited number of doctors, became more widely known. By targeting the people who prescribed Glaxo�s products it was able to sell to the Public Health Departments of a number of cities including Sheffield, Manchester and Birmingham. Sales of Nathan's products steadily increased.

Nathan had another method of influencing the Public Health Authorities � this was through the appointment to Glaxo of a government chemist called Harry Jephcott.

This recruitment drive led to other employees from the Public Health Authorities joining Glaxo's staff: a Mr Hunwicke from the Somerset County Public Health Laboratory, a Ms Allchorne and a Ms Findlayson from the government laboratory.

These staff officials naturally had connections and influence in the Public Health Departments. From this time on Glaxo was able to market its products from the inside.

The Second World War gave Nathan an opportunity to capitalise on the new recruits� contacts and with government backing he set up a drug factory in Durham. By the end of the war his factories were producing 90% of the UK's supply of new drugs.

Harry Jephcott became Chairman of Glaxo Laboratories Limited in 1946. He soon recognised that the new National Health Service, established in 1948, could be his single most profitable customer. Instead of having to influence the hundreds of different Public Health Departments scattered around the country he needed contacts within the new emerging bureaucracy to ensure that he became prominent in supplying the service with Glaxo's drugs. He did this by targetting senior civil servants who were to run the Department of Health and Social Security from Whitehall.

Jephcott's appointment had proven to be a profitable one - soon Health Service officials were signing major deals with Glaxo. This strategy was to become an important factor in the significant growth of the company. Many competitors were taken over by Glaxo Laboratories Limited. The company now called itself the Glaxo Group and consisted of various companies that were each individually limited in their liability.

The Thalidomide tragedy in the 1960s resulted in the introduction of the 1968 Medicines Act. Previously there had been only a voluntary code of practice for the pharmaceutical industry to comply with. But the Thalidomide tragedy exposed the code as inadequate, and measures were introduced to bring the industry under legislation. The main purpose of the Licensing Authority was to test the safety, quality and efficacy of existing drugs on the market and to licence them. Under the new proposals a body corporate called the Medicines Commission was to be established with no less than eight members appointed by the Licensing Authority (Government Ministers) and to include representatives of the pharmaceutical and chemical industries. Part of the Act provided the members of the Medicines Commission with powers to establish advisory committees. The Committee on Safety of Medicines (CSM) and the Committee on the Review of Medicines (CRM) were set up when the Act came into effect on 1st September 1971.

The new legislation would mean stricter controls on the pharmaceuticals industry. This was unacceptable to the industry, which fought hard to have the Medicines Act drafted in such a way that it would benefit its own interests. Many companies also made sure that they had representatives present in the different committees. Usually they were heads of the research laboratories and many of the drugs they were testing for safety, quality and efficacy were their own company's drugs.

The contacts within Whitehall established so many years previously enabled Glaxo's drugs to be granted concessions that other companies� drugs were denied. Myodil was one such drug that was not licensed through the proper procedures. All drugs on the market were given a one-year statutory period in which to register with the Medicines Commission: once registered each company�s drugs would be granted a non-transferable Product Licence of Right (PLR). The first PLR granted for Myodil was on the 19th November 1973 - one full year after its registration period had ended.

The files containing the licensing history of Myodil have been �mislaid� by the Medicines Control Agency . After pressure from the Myodil Action Group, which fought for an investigation, the Parliamentary Ombudsman recommended a release of the documents. However, the Permanent Secretary to the Health Department refused to release the major part of the Myodil licensing documents.

On the 19th September 1988 Glaxo notified the Department of Health that Myodil was to be discontinued in the UK for commercial reasons, but they wished to retain the product licence issued in June 1987 as the product was not being discontinued worldwide. Myodil is thus still manufactured and sold overseas - it has found new markets in countries that are vulnerable to the marketing strategy that made Glaxo one of the largest pharmaceutical companies.

Glaxo has always maintained that the links between Myodil and adhesive arachnoiditis have not been proven. But in an out of court settlement in 1995, whilst denying liability Glaxo Laboratories Limited paid out, on average, �16,000 to each of 425 claimants suffering from Myodil Adhesive Arachnoiditis. A further 3,000 claimants had to withdraw because of what many of them felt to be Glaxo's solicitors� bullying tactics. Settling out of court meant that Glaxo effectively closed the door on any further litigation in the UK.

Glaxo was certainly aware from an early stage that Myodil was an irritant. Equipped with that knowledge it could have investigated further given the nature of Myodil's use. It did not. If it had, it would have concluded that Myodil was toxic and should be withdrawn. It was not withdrawn until 1988, and then only for �commercial� reasons.

The Board of Glaxo sits in its plush Head Office in Berkley Square planning the future of the company. The fact that one of their products has caused suffering to so many people around the world, and that many more are still being injected with this highly toxic drug, does not appear to be ranking high on the list of priorities.

Contact: Myodil Action Group Tel: [redacted]

This post has been edited by admin: 15 April 2012 - 12:05 AM
Reason for edit: personal contact details redacted at the request of the author

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#2 User is offline   gaffa09 

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Posted 25 March 2009 - 09:40 AM

bump :angry:
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#3 User is offline   hukildaspida 

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Posted 19 July 2012 - 12:06 AM

http://www.stuff.co....-door-for-Kiwis

Thalidomide settlement opens door for Kiwis

STACEY KIRK
Last updated 14:56 18/07/2012

Health


A groundbreaking settlement has opened the door for New Zealanders to claim a share of a multi-million dollar compensation for birth defects caused by the drug thalidomide.


Australian woman Lynette Rowe
has been awarded significant compensation from a distributor of the drug in a Melbourne court.

Compensation from UK distributor company Diageo will provide her with care for the rest of her life.

The full extent of the settlement has not been revealed but it is in the millions - enough to relieve her ageing parents who have dedicated themselves to her needs for the past 50 years, Melbourne lawyers Slater and Gordon said.

Rowe is the representative plaintiff in a class action lawsuit which has been going for a number of years.

About 10,000 babies worldwide were born with severe deformities. There are 10 Thalidomiders in New Zealand.

Diageo promised British survivors $35 million in compensation in 2009.
Manufactured by German Company Grunenthal, thalidomide was introduced in the late 50s to treat morning sickness and aid sleep.

It was withdrawn from public sales in 1960 when it was revealed it was the cause of serious birth defects in a generation of children.

It is still used in the treatment of some cancers, including multiple myeloma.

Thalidomide drugs were distributed in Australia and New Zealand around 1960 and 1961 by Distillers, which became part of Diageo in 1997.

Rowe's lawyer Peter Gordon, from Gordon Legal
, said negotiations would now begin on the remaining cases.

"For most of the last month, while this settlement was being discussed, Lyn's concern has been not so much for herself but instead for the plight of other unrecognised thalidomiders in Australia and New Zealand.

"She has insisted that they get an opportunity to put their cases through a fair and equitable process. Diageo has done the right thing and made that promise to Lyn," Gordon said.

Slater & Gordon's Michael Magazanik,
who with Gordon conducted Rowe's claim, said the legal action had also been against Grunenthal, but the pharmaceutical giant refused to contribute to the settlement.

Magazanik said Diageo had agreed to include New Zealand claimants in discussions as well as Australians.

"I have been to New Zealand this year to interview witnesses and speak with thalidomiders. We've always regarded New Zealand as a very important part of this case."


- © Fairfax NZ News


http://www.news.com....9-1226428825644
Excerpt

Melbourne's Lynny Rowe wins multi-million dollar settlement from Diageo over anti-nausea drug thalidomide

Mr Gordon explained that the delay in winning justice for Ms Rowe was due to a number of factors.

He said the thalidomide disaster happened between 1958 and 1961 and some victims settled claims as children or were told when they got older that the legal time limit had run out.

He said many victims were uncompensated because doctors "played God'' and gave opinions on which disabled child was a victim of the thalidomide when they had no expert knowledge on the effects of the drug.

"Lives and families were wrecked as person after person were told that they weren’t thalidomiders. That instead this was some freak of nature, an aberration with no explanation,'' Mr Gordon said.

“There were mothers who said they took thalidomide were not believed and families were left to battle it out without compensation and support for 50 years.''

Mr Gordon said the lawyers and the courts also ganged up on victims and forced them to accept there was little or no negligence.

He said that the victims of the drug were grown up now and all over the world they were demanding answers, accountability and compensation.

"Lynette Rowe, an armless and legless woman from suburban Nunawading in Victoria has struck a blow for thalidomiders all over the world,'' he said.


Calls for thalidomide maker to take responsibility
Simon Lauder reported this story on Wednesday, July 18, 2012

http://www.abc.net.a...12/s3548649.htm
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#4 User is offline   hukildaspida 

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Posted 19 July 2012 - 12:13 AM

Lynette Rowe is an inspiration.

What a brilliant quote;
“It is great that my case will bring about good things for other people too. It shows you don’t need arms and legs to change the world. Like I always say: see the person, not the disability.”

http://www.slatergor...eakthrough12001


Thalidomide Class Action Breakthrough

Home | Media Centre | Media Releases | VIC, ACT, SA, TAS & NT | Thalidomide Class Action Breakthrough


Thalidomide Class Action Breakthrough
Media Release
Download this item
18 July 2012

Australian woman Lynette Rowe who was born without arms and legs because of thalidomide has settled her case for a multi-million dollar sum - and other Australians and New Zealanders may soon follow suit.

Compensation from the UK company Diageo plc will provide Ms Rowe with care for the rest of her life, relieving her ageing parents who have dedicated themselves to her needs for the past 50 years.

Thalidomide drugs were distributed in Australia and New Zealand around 1960 and 1961 by Distillers, which became part of Diageo in 1997.


Ms Rowe’s lawyer Peter Gordon, from Gordon Legal,
says negotiations will now begin on the remaining cases.

“This is a great outcome for a wonderful family. The amount of the settlement will remain private but I can say it is a multi-million dollar amount and will be sufficient to provide a very good level of care for Lyn for the rest of her life.

“For most of the last month, while this settlement was being discussed, Lyn’s concern has been not so much for herself but instead for the plight of other unrecognised thalidomiders in Australia and New Zealand.

“She has insisted that they get an opportunity to put their cases through a fair and equitable process. Diageo has done the right thing and made that promise to Lyn.

“The result in my opinion is fair and consistent with the compassionate and understanding approach I saw Diageo take to these cases in 2010 when they agreed to a further ex gratia package of assistance to the thalidomide survivors who had settled their common law claims back in the 1970s.”

Lyn Rowe said she was proud of the result. “It is great that my case will bring about good things for other people too. It shows you don’t need arms and legs to change the world. Like I always say: see the person, not the disability.”

Ms Rowe thanked Diageo for their positive attitude to her case and the claims of other thalidomiders. “Diageo says they will consider other claims in good faith and I believe them,” she said.

Lyn’s father Ian Rowe
said he and his wife Wendy are very proud of their daughter.

“Lyn was always prepared to go to trial to get the right result and Wendy and I are incredibly proud of her determination and persistence.

“Those pills that Wendy and thousands of other women took 50 years ago have caused so much heartache and suffering but at least something positive is now being done to put some things right.

“We are also grateful to our legal team for their work for Lyn, and to the hundreds of Australians who sent messages of support.”

Slater & Gordon’s Michael Magazanik, who with Peter Gordon conducted Ms Rowe’s claim, said the legal action had also been against Grunenthal, a German pharmaceutical company, which invented thalidomide and then licensed other companies (including Distillers) to sell it around the world.

“Grunenthal started by trying unsuccessfully to get Lyn's claim kicked out of Australia and into the German courts. In other words Grunenthal tried to force a limbless woman and her elderly parents to travel to the other side of the world to try and bring their case in a country where they don’t speak the language. Then Grunenthal tried – and failed – to delay the trial date and strike out Lyn’s claim. Now they have refused to contribute to the settlement.

“The facts about Grunenthal and thalidomide need to come out. For example, the thalidomide in every pill taken by pregnant Australian women in the 1950s and 60s – including by Lyn’s mother - was made by Grunenthal at their own factory in Germany.

“Grunenthal never tested the drug on pregnant animals or followed up its effect in pregnant women, yet assured doctors the drug was exceptionally safe.

“Many of our clients would love to see Grunenthal held to account for their global actions on thalidomide. Grunenthal likes to say it did nothing wrong in relation to thalidomide but we challenge Grunenthal to make public its own thalidomide documents and let the public decide for themselves what they think of Grunenthal’s behavior.”

Mr Magazanik said it was particularly pleasing that Diageo had agreed to include New Zealand claimants in the settlement discussions as well as claimants from all parts of Australia.

“Diageo says it wants to negotiate those claims in good faith and we welcome those sentiments.

“I have been to New Zealand this year to interview witnesses and speak with thalidomiders. We’ve always regarded New Zealand as a very important part of this case.”

Mr Gordon said the process of considering other claims has already begun and two other claims were well advanced.

“We are pleased to have resolved a process with Diageo for good faith negotiations to take place in Melbourne. We have been contacted by over 100 people. We will work through their claims as quickly as possible, although this is a complex issue. ”

During the process to consider other claims Lynette Rowe will remain the representative plaintiff unless otherwise ordered by the Court. She is proud to do so. Her lawyers will seek an adjournment in the trial due to begin on October 8 until at least August 2013 to allow this process to consider other claims to be worked through.
At that time, any unresolved claims may go on against the current defendants including Grunenthal.

The next step in the class action is to close the class. Any thalidomiders in Australia or New Zealand who have not already registered with Gordon Legal or Slater & Gordon should consider doing so urgently.

Mr Gordon says the Lynette Rowe case has been a great opportunity to right some historic wrongs.

“Many of these people have battled horrendous difficulties for 50 years without help or justice. We want to ensure all thalidomiders have an opportunity to get justice.”
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#5 User is offline   hukildaspida 

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Posted 13 August 2012 - 09:32 PM

The full article about Thalidomide in this weeks Listener is well worth reading.

http://www.listener....-from-12-08-12/

In the new Listener, on sale from 12.08.12
| Published on August 10, 2012 | Online Only
Comments: Leave a Comment | Tags: in the listener this week Updated
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Fifty years after the thalidomide scandal, the subject of an Emmy-winning drama talks about his life and the injustice still experienced by others.

Fifty years after the thalidomide scandal, Terry Wiles, the subject of an Emmy-winning drama talks to Guyon Espiner about his life and the injustice still experienced by other New Zealanders in this week’s cover story.

It begins:

Terry Wiles turned 50 this year. Nobody expected him to live this long. But here he is, very much alive, sitting in the sparsely furnished lounge of his modern but modest Papamoa house, where he lives with his wife, Robyn, and Mel the dog.

Wiles doesn’t have a paid job but describes himself as an ambassador. He loves people and he loves technology. He loves his iPad and he loves the internet. Wiles doesn’t have any arms or legs. He has one eye and two flipper-like feet. He also has a big heart, a big brain and, as you soon discover, a rather large mouth.

Mum was 17 when she gave birth to Wiles in Britain in 1962. Like many other mothers in the late 1950s and early 1960s, she had been taking the drug thalidomide to relieve morning sickness. Thousands of babies in Britain and around the world were born with severe disabilities as a result of the drug, but the damage done to Wiles was at the extreme end.

The thalidomide scandal has been around as long as Wiles has. This year marks the 50th anniversary of the exposure of its horrors. Wiles received a compensation payment in the UK in 1973. Incredibly, some victims are still waiting, including 10-15 New Zealanders who have joined a class action being taken against the UK distributor, Diageo.

Wiles is urging them on. “Get on with it. Do it. [The company has] a moral obligation to these people.”

It seems unbelievable that justice could be delayed for half a century, but not to Wiles.

“Man is a predator. Man is a devourer of other men. Man is quite good at sidestepping his responsibilities when he wants to.”
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#6 User is offline   hukildaspida 

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Posted 13 August 2012 - 09:37 PM

http://www.nzherald....jectid=10825539

Pharmaceutical giant pays $73.8m to settle accusations of bribery
5:20 AM Thursday Aug 9, 2012


Pfizer
has agreed to pay the United States Government US$60 million ($73.8 million) to settle allegations that its employees bribed doctors and other foreign officials in Europe and Asia to win business and boost sales.

The Securities and Exchange Commission said yesterday that overseas subsidiaries of the world's largest research-based pharmaceutical company made illegal payments to healthcare workers in China, Italy, Russia, Croatia and other Eastern European countries. As early as 2001, Pfizer sales representatives tried to conceal the bribes by recording them as legitimate business expenses for travel, entertainment and marketing purposes, it said.

"Pfizer subsidiaries in several countries had bribery so entwined in their sales culture that they offered points and bonus programmes to improperly reward foreign officials who proved to be their best customers," said Kara Brockmeyer, chief of SEC's foreign enforcement division.

Pfizer's China operation created a points plan that let doctors buy gifts based on points earned for prescribing Pfizer medications. And Pfizer would invite high-prescribing doctors to club-like meetings as a reward.

The settlement includes alleged violations by Wyeth, the New Jersey-based drugmaker which Pfizer acquired in 2009. Wyeth gave up more than US$17 million in profits, plus US$1.6 million in interest. Pfizer agreed to disgorge US$16 million in profits and interest of US$10.3 million.

As part of the settlement, Pfizer's HCP subsidiary agreed to pay US$15 million to resolve similar bribery allegations with the Department of Justice. In addition to the settlement fee, the Pfizer unit agreed to a two-year deferred prosecution agreement.

In the past five years, the department has investigated several pharmaceutical and medical device companies that operate overseas.

Last year J&J agreed to pay US$70 million to settle civil and criminal charges of bribery.

Industry experts say giving gifts and payments to doctors is not unusual for drug and medical device companies which operate in dozens of countries.


Shares of Pfizer slipped US41c to US$23.85 yesterday.

- AP
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#7 User is offline   hukildaspida 

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Posted 13 August 2012 - 09:40 PM

http://www.nzherald....jectid=10817029

Drug giant hit with $3b fine after safety fraud
7:30 AM Tuesday Jul 3, 2012

GlaxoSmithKline has admitted marketing drugs for unauthorised uses, holding back safety data and cheating the US Government's Medicaid programme. Photo / Thinkstock

GlaxoSmithKline has been socked with US$3 billion in fines by US authorities over charges it marketed drugs for unauthorised uses, held back safety data and cheated the government's Medicaid program.

The Justice Department said GSK was fined over misbranding its drugs Paxil and Wellbutrin, and for holding back data while making unbacked claims for its diabetes drug Avandia.

GSK pleaded guilty and agreed to the fines in what the department called the largest health care fraud settlement in US history.

GSK, one of the world's largest health care and pharmaceuticals companies, admitted to charges that it had promoted antidepressants Paxil and Wellbutrin for uses not approved for by US regulators, including treatment of children and adolescents.

The British drugmaker also conceded charges that it held back data and made unsupported safety claims over its diabetes drug Avandia.

Altogether it will pay $1 billion in criminal fines and forfeitures over charges relating to the three drugs.

In addition, the company will pay $1.7 billion in civil fines for illegal promotion of those drugs as well as others; paying kickbacks in their marketing; and making unsubstantiated claims about Avandia's safety and efficacy.

And separately, GSK is being fined $300 million to settle charges it underpaid rebates it owed to the US Medicaid program.

GSK chairman Sir Andrew Witty
said in a statement that the problems originated in a "different era" and the company had "fundamentally" changed its procedures for compliance, marketing and selling its products, and has removed employees involved in misconduct.

"On behalf of GSK, I want to express our regret and reiterate that we have learnt from the mistakes that were made."
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#8 User is offline   hukildaspida 

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Posted 03 September 2012 - 11:15 AM

Please click on the link to read the blue highlighted links.

http://www.guardian....from-grunenthal


Thalidomide victims get apology from makers after half a century


Group representing UK victims of drug that caused birth defects says German firm must 'put their money where their mouth is'



Ben Quinn
The Guardian, Saturday 1 September 2012

Memorial to victims of thalidomide
The bronze memorial by artist Bonifatius Stirnberg in Stolberg, Germany to commemorate the victims of thalidomide. Photograph: Jens Schlueter/AP

The first apology for half a century by the German maker of the anti-morning sickness drug thalidomide has been rebuffed by a charity representing people affected by the drug in Britain.

The Grünenthal Group said it regretted the consequences of the drug, which was used to combat morning sickness but led to the births of children without limbs or with shortened limbs during the 1950s and 60s. Thalidomide was pulled from the market in 1961 after it was linked to birth defects and many victims have only recently received compensation.


The company's chief executive, Harald Stock, said Grünenthal 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."

The apology was rejected as insufficient by the Thalidomide Agency UK, which represents people who were affected by the drug in Britain. Freddie Astbury, the charity's head consultant, claimed the company was only now apologising because of court proceedings brought by victims in Australia and said it needed to "put their money where their mouth is" rather than simply express regret.

"If they are serious about admitting they are at fault and regret what happened, they need to start helping those of us who were affected financially," said Astbury, who was born in Chester in 1959 with no arms and no legs after his mother took the drug. "Being disabled is very expensive and thalidomide people need help and care, and adaptations to their cars and homes. We just want people to live a comfortable life and that means Grünenthal have to pay for their mistake financially."

Stock was speaking in the western German city of Stolberg, where the company is based, at the inauguration of a memorial to commemorate the victims of thalidomide.

"Thalidomide is and will always be part of our company's history. We have a responsibility and we face it openly," said Stock, who added that the inauguration of the memorial had "triggered very critical reactions alongside great support".

He told city clerk, Johannes Igel, who campaigned for the memorial: "We have chosen to support your cause, which is also the cause of many affected people. The memorial symbolises an important milestone of a larger development. It is a development towards an ongoing dialogue, ongoing moving towards one another, incipient efforts to understand and – consequently – to act together."

"On behalf of Gruenenthal with its shareholders and all employees, I would like to take the opportunity at this moment of remembrance today to express our sincere regrets about the consequences of thalidomide and our deep sympathy for all those affected, their mothers and their families."

"We see both the physical hardship and the emotional stress that the affected, their families and particularly their mothers, had to suffer because of thalidomide and still have to endure day by day."

Stock went on to say the "thalidomide tragedy" had taken place 50 years ago "in a world completely different from today."

"Grünenthal has acted in accordance with the state of scientific knowledge and all industry standards for testing new drugs that were relevant and acknowledged in the 1950s and 1960s. We regret that the teratogenic [capacity to result in a malformation of an embryo] potential of thalidomide could not be detected by the tests that we and others carried out before it was marketed."

He added that the company wanted to address its message particularly to all the affected and their mothers, adding: "We also apologise for the fact that we have not found the way to you from person to person for almost 50 years. Instead, we have been silent and we are very sorry for that."

"We ask that you regard our long silence as a sign of the silent shock that your fate has caused us. We have learned how important it is that we engage in an open dialogue with those affected and to talk and to listen to them."

Thalidomide UK Agency says there are 458 people currently in the UK who were affected by the drug, but that for every thalidomide baby that lived there were 10 that died.


The British government expressed "sincere regret" in January 2010 for the decision to give the drug the stamp of approval and set up a funding scheme to help survivors cope.

Thalidomide was originally prescribed as a "wonder drug" for morning sickness, headaches, coughs, insomnia and colds. Babies often suffered missing or deformed limbs and extreme shortening of arms and legs, but the drug also caused malformations of the eyes and ears, genitals, heart, kidneys and digestive tract.
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#9 User is offline   hukildaspida 

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Posted 03 September 2012 - 11:22 AM

This from 2010.

Why has it taken so long?

Why was the use of Thalidomide allowed to continue unabated?


http://www.stuff.co....frenzy-of-calls

Millionaire hunt sparks frenzy of calls

BY MARTIN VAN BEYNEN
Last updated 05:00 03/08/2010


The hunt for New Zealand thalidomide victim Craig Phillips to tell him about a $1 million compensation package has created turmoil for a near namesake and fellow "thalidomider".

A bid by Australian advocates for about 45 surviving Australasian thalidomide victims – called "thalidomiders"– to find Phillips was publicised at the weekend.

As a result, Craig Philip, 48, of Ashburton, was inundated with emails and phone calls from wellwishers and friends.

People who know Philip, including his 300 workmates at the Silver Fern Farms meatworks at Fairton, north of Ashburton, immediately thought of him because he is a thalidomide victim.

But Craig Philip is not the Craig Phillips the advocates are still seeking.

Australian advocate Ken Youdale said from Sydney yesterday that Philip and Phillips were eligible for a payment from a fund set up by British beverage giant Diageo as a goodwill gesture.

"It is just one of those sad, extraordinary coincidences."

Youdale said the message about the compensation had become a little "warped".

"There is no million-dollar man in any of this. It's an ex gratia payment, which is an unbelievable thing for a big company to do. They had no obligation to do so," he said.

The fund, believed to be about NZ$62m, would be paid out at a rate of $3.5m a year in confidential amounts based on the severity of the disability.

Philip, who is married with two children, declined to comment yesterday, but it is understood he received a small payout in 1974, when victims received what was then a full and final payment.

Publicity about the hunt for Phillips has prompted other potential thalidomide victims to consider coming forward.

Natalie Thomson, of Christchurch, who took thalidomide during pregnancy, said her daughter, 47, was born with a skull deformity.

After an operation to correct the deformity, doctors said her daughter might not walk, and although she did, she had co-ordination and eyesight problems.

Her daughter had a stroke three years ago and had become more disabled.

Thomson said no-one had drawn a connection with thalidomide when her daughter was born, and she had not pursued it. Her daughter could use the money now.


- © Fairfax NZ News
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Posted 03 September 2012 - 11:26 AM

What defects and harm is it doing to those who Thalidomide is still sold to today, as a treatment for multiple myeloma, a bone marrow cancer and leprosy?
What protections are been offered to the guinea pigs who are been used in studies to see if it might be useful for other conditions including Aids, arthritis and other cancers?


http://www.stuff.co....ide-apologisies

Manufacturer of thalidomide apologisies

Last updated 10:32 01/09/2012


thalidomide
BIRTH DEFECT: Thalidomide victim Tony Melendez is shown in an undated file photo at age four while attending a therapy programme at the University of California.

The German manufacturer of a notorious drug that caused thousands of babies to be born with shortened arms and legs, or no limbs at all, issued its first ever apology Friday (local time) - 50 years after pulling the drug off the market.

Gruenenthal Group's chief executive
said the company wanted to apologize to mothers who took the drug during the 1950s and 1960s and to their children who suffered congenital birth defects as a result.

"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," Harald Stock said. "We ask that you regard our long silence as a sign of the shock that your fate caused in us."

Stock spoke in the west German city of Stolberg, where the company is based, during the unveiling of a bronze statue symbolising a child born without limbs because of thalidomide. The statue is called "the sick child" - a name German victims group object to since all the victims are now adults. In German, the name also implies cure.

The drug is a powerful sedative and was sold under the brand name Contergan in Germany. It was given to pregnant women mostly to combat morning sickness, but led to a wave of birth defects in Europe, Australia, Canada and Japan. Thalidomide was yanked from the market in 1961 and was also found to cause defects in the eyes, ears, heart, genitals and internal organs of developing babies.

Thalidomide was never approved for use in pregnant women in the United States.

Freddie Astbury, of Liverpool, England, was born without arms or legs after his mother took thalidomide. The 52-year-old said the apology was years long overdue.

"It's a disgrace that it's taken them 50 years to apologize," said Astbury, of the Thalidomide U.K. agency, an advocacy group for survivors. "I'm gobsmacked (astounded)," he said. "For years, (Gruenenthal) have insisted they never did anything wrong and refused to talk to us."

Astbury said the drug maker should apologize not just to the people affected, but to their families. He also said the company should offer compensation. "It's time to put their money where their mouth is," he said. "For me to drive costs about 50,000 pounds ($79,000) for a car with all the adaptations," he said. "A lot of us depend on specialist care and that runs into the millions."

Astbury said he and other U.K. survivors have received some money over the years from a trust set up by thalidomide's British distributor but that Gruenenthal has never agreed to settle.


"We invite them to sit around the table with us to see how far their apology will go," he said. "I don't think they've ever realized the impact they've had on peoples' lives."


Gruenenthal settled a lawsuit in Germany in 1972 - 11 years after stopping sales of the drug - and voiced its regret to the victims. But for decades, the company refused to admit liability, saying it had conducted all necessary clinical trial required at the time.

Stock reiterated that position Friday, insisting that "the suffering that occurred with Contergan 50 years ago happened in a world that is completely different from today" and the pharmaceutical industry had learned a valuable lesson from the incident.

"When it developed Contergan Gruenenthal acted on the basis of the available scientific knowledge at the time and met all the industry standards for the testing of new drugs that were known in the 1950s and 1960s," he said.

A German victims group rejected the company's apology as too little, too late.


"The apology as such doesn't help us deal with our everyday life," said Ilonka Stebritz, a spokeswoman for the Association of Contergan Victims. "What we need are other things."

Stebritz said that the 1970 settlement in Germany led to the creation of a €150 million fund for some 3,000 German victims, but that with a normal life expectancy of 85 years the money wasn't enough. In many other countries, victims are still waiting for compensation from Gruenenthal or its local distributors.

In July, an Australian woman born without arms and legs after her mother took thalidomide reached a multimillion dollar settlement with the drug's British distributor. Gruenenthal refused to settle. The lawsuit was part of a class action and more than 100 other survivors expect to have their claims heard in the next year.

Thalidomide is still sold today, but as a treatment for multiple myeloma, a bone marrow cancer and leprosy. It is also being studied to see if it might be useful for other conditions including Aids, arthritis and other cancers.

- AP
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Posted 03 September 2012 - 11:28 AM

http://www.news.com....1-1226463047140

Thalidomide survivor Lynette Rowe's mum slams drug giant's apology

Brigid O'Connell, Anne Wright
Herald Sun
September 01, 2012 10:00PM


Thalidomide apology 'pathetic'-law firm
Lynette Rowe with parents Ian and Wendy.


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A law firm acting for Australian thalidomide victims says the apology issued by the company is pathetic.
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Lynette Rowe

Lynette Rowe with parents Ian and Wendy. Source: Herald Sun
Lynette Rowe

Wendy Rowe and daughter Lynette, centre, fight back tears alongside lawyers Michael Magazanik, left, and Peter Gordon, both of Gordon Legal. Picture: Tess Follett Source: Herald Sun

THALIDOMIDE survivor Lynette Rowe fought back tears as her mother slammed the first apology from the German manufacturer of the drug.

Wendy Rowe broke down as she described the devastating effects of the morning sickness drug, which caused Lynette to be born without arms and legs and more than 10,000 babies worldwide to be disabled.

"What the Grunenthal executive said is of great concern to me. I have read his speech and so-called apology," the Melbourne mother said. "It's the sort of apology you give when you're not really sorry."

Grunenthal chief Harald Stock said the pharmaceutical company expressed its ''sincere regret'' for the ''physical hardship and the emotional stress'' caused by thalidomide, in its first apology since taking the drug off the market 50 years ago.

However, the apology stopped short of acknowledging that it knew in the 1950s the drug was not safe, saying the tragedy took place in "a world completely different from today".

Mr Stock said: "We ask that you regard our long silence as a sign of the silent shock that your fate has caused us.

"We also apologise for the fact that we have not found the way to you from person to person for almost 50 years.

"Instead, we have been silent and we are very sorry for that."

Mrs Rowe, who took thalidomide for about a month in 1961 to treat anxiety and morning sickness, said the apology was insulting to survivors and their families.

"He wants us to believe Grunenthal had not apologised for 50 years because it's been in silent shock. I suspect he might not know what shock is," she said.

"Shock is having your precious child born without arms and legs. It's accepting that your child is not going to have that life that you wanted for her.

"Our family couldn't have gone into silent shock, we had to get up and face each day and every day and cope with the incredible damage that Grunenthal had done to Lynne and our family."

Class actions against Grunenthal allege it knew that the drug resulted in birth deformities, including in company employees' children, but had suppressed and ignored the information.

Mr Stock made the apology on Friday in a speech to unveil a memorial to thalidomide victims, a bronze statue of a disabled child, at the company's base in Stolberg, western Germany.

A statement issued by Slater and Gordon lawyers, which represents a class action of thalidomide survivors, said the "pathetic" apology was a "calculated corporate strategy to avoid the moral, legal and financial consequences of its reckless, negligent actions of the 1950s and 1960s".

Up to 6000 sufferers, including more than 100 Australians, are believed to be still alive.

Lynette is leading a class action against Grunenthal after settling a multi-million-dollar settlement with Australian distributor Diageo in July.
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Posted 03 September 2012 - 11:30 AM

http://www.heraldsun...o-1226462875661


Drug firm Gruenenthal Group apologises for thalidomide


FRANK JORDANS Associated Press
From: AP
September 01, 2012 4:57AM



Thalidomide

Children from all over the world developed deformities after their mothers took thalidomide while pregnant. The German company responsible has finally apologised, 50 years after the drug was taken off the market.
News Limited

THE German manufacturer of a notorious drug that caused thousands of babies to be born with shortened arms and legs, or no limbs at all,
issued its first ever apology - 50 years after pulling the drug off the market.


Gruenenthal Group's chief executive said the company wanted to apologise to mothers who took the drug during the 1950s and 1960s and to their children who suffered congenital birth defects as a result.

"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," said Harald Stock.

"We ask that you regard our long silence as a sign of the shock that your fate caused in us."

Mr Stock spoke in the west German city of Stolberg, where the company is based, during the unveiling of a bronze statue symbolising a child born without limbs because of thalidomide.

The drug, which was sold under the brand name Contergan in Germany, was given to pregnant women to combat morning sickness but led to a wave of birth defects in Europe, Australia, Canada and Japan. Thalidomide was never approved for sale in the United States.

Gruenenthal settled a lawsuit in Germany in 1972 - 11 years after stopping sales of the drug - and voiced its regret to the victims. But for decades the company refused to admit liability, saying it had conducted all necessary clinical trials required at the time.

Mr Stock reiterated that position, insisting that "the suffering that occurred with Contergan 50 years ago happened in a world that is completely different from today" and the pharmaceutical industry had learned a valuable lesson from the incident.

"When it developed Contergan, Gruenenthal acted on the basis of the available scientific knowledge at the time and met all the industry standards for the testing of new drugs that were known in the 1950s and 1960s," he said.

A German victims group rejected the company's apology as too little, too late.

"The apology as such doesn't help us deal with our everyday life," said Ilonka Stebritz, a spokeswoman for the Association of Contergan Victims.

"What we need are other things."

Ms Stebritz said that the 1972 settlement in Germany led to the creation of a 150 million euro ($181 million) fund for some 3000 German victims, but that with a normal life expectancy of 85 years the money wasn't enough. In many other countries victims are still waiting for compensation from Gruenenthal or its local distributors.

Thalidomide is still sold today, but as a treatment for multiple myeloma and leprosy.
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Posted 03 September 2012 - 11:42 AM

http://www.3news.co....68/Default.aspx

Thalidomide victims unmoved by apology


Sat, 01 Sep 2012 6:00p.m.
Barry De Geest is one of 15 known Thalidomide survivors in New Zealand


By David Farrier

The German maker of a notorious drug that caused thousands of babies around the world to be born with shortened arms and legs or no limbs at all has issued its first ever apology.

But that apology has come 50 years after Thalidomide was pulled off the market. The company said its long silence was due to its own shock over the scandal.

Barry De Geest is one of 15 known Thalidomide survivors in New Zealand. His mother was prescribed Thalidomide while she was pregnant, and he was born with severe birth defects.


The 51-year-old awoke in Auckland this morning to an apology from the drug company responsible for his condition.

“I yawned,” he says. “I just yawned.”

The chief executive of Gruenenthal apologised to the mothers and their children affected by the drug and asked for forgiveness. He went on to say: "We also apologise for the fact that we have not found the way to you from person to person for almost 50 years. Instead, we have been silent and we are very sorry for that.


"Regard our long silence as a sign of the silent shock that your fate has caused us."

In the late 1950s, the drug was sold in 46 countries, including New Zealand. In 1961, the drug was taken off the market, although it's used today to treat bone marrow cancer and leprosy.


“I've done okay for myself but I've had to live for 50 years with no arms and short legs,” says Mr De Geest. “That's a result of Thalidomide that Grendathole made and they knew what was going on. So the least they can do is to actually share some of that profit, because they make billions of dollars each year.”

Along with the apology came a statue in West Germany, paid for by Gruenenthal, which Mr De Geest says is a waste of money.

Some have managed to win compensation. Just more than a month ago, Thalidomide victim Lynette Rowe won a landmark claim in Australia, receiving a multimillion dollar payout from the drug's distributor.

“It’s the type of apology you give when you’re not really sorry,” says Wendy Rowe, Lynette Rowe’s mother. “It’s also insulting. He wants us to believe Gruenenthal had not apologise for 50 years because it’s been in silent shock. I suspect he might not know what shock is.”

The reaction from Thalidomide survivors in Germany has generally been negative, criticising the 50 year wait for the apology and a lack of monetary compensation to back it up.

3 News

Read more: http://www.3news.co....x#ixzz25MJOQudj
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Posted 16 October 2012 - 10:24 PM

http://www.nzherald....jectid=10826509

Whanau Ora: Disabled uncle has new hope after 14 years on benefit
By Yvonne Tahana
5:30 AM Monday Aug 13, 2012

The Government's flagship welfare policy for Maori, Whanau Ora - worth $40 million this year - is designed to lift families out of poverty and dysfunction, but it has been criticised as a waste of money and an opportunity for some to rort the system. In a four-part investigation, Yvonne Tahana speaks to those at Whanau Ora's frontline.

Taupae Connelly, with his niece Blossom Connelly, hopes the scheme will improve the lives of his whanau. Photo / Steven McNicholl

Taupae Connelly, a thalidomide victim born with fused fingers, shortened limbs and part of his right arm missing, says he fought a silent battle with Work and Income for 14 years.

The experience didn't give him much confidence that Whanau Ora would work for him.

Now 56, the uncle from Kaiwaka in Northland, who had worked in office administration, hit a patch where he found himself redundant at 35.

Employers didn't want to take a chance. Normal tasks would be too difficult, he was told. "You give up after a while because you know you're going to get the same story."

Mr Connelly acknowledges he didn't make the most of opportunities when he was younger and that has contributed to his position. But he has also taken risks, owning a possum-hunting business before it became uneconomic.

For 14 years he sat on the sickness benefit. He wasn't sick, but he couldn't seem to convince authorities that he had a disability and needed extra help.

Eventually, on a visit to a Whangarei Winz office in 2005, the penny seemed to drop for one staff member, he said.

"She says to me, 'What are you here for?' She punched my number up and then her face changed. I'd been waiting for this look. I'd imagined it and dreamed about it for many years.

"She goes, 'You're on a sickness benefit but there's nothing wrong with you; you're disabled'."

Mr Connelly said his experience of Government agencies was that they didn't want to help him move out of his cycle. He also suspected lots of welfare cash got sucked up by bureaucracy, leaving the poor as "penniless" as ever.

Tiaho Trust's chief executive Johnny Wilkinson worked on him, convincing him over time that Whanau Ora's approach was different.

Mr Connelly has nearly finished a plan which has two main thrusts. The Connellys have a high cancer rate so he wants his relations to look at ways of reducing risk. Also, he hopes to bring his family together to discuss a plan for their financial wellbeing.

"I'm quietly hopeful," he said. "I want Whanau Ora to lay the foundation. It's about the future of our whanau. This is totally different from what the Government system usually is.

"It's about saying, 'What are your needs? Identify them, and how do you see them being addressed'."
By Yvonne Tahana Email Yvonne
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Posted 16 November 2012 - 06:04 PM

http://www.listener....es-50-years-on/

Thalidomide victim Terry Wiles 50 years on

By Guyon Espiner | Published on August 18, 2012 | Issue 3771

Fifty years after the thalidomide scandal, the subject of an Emmy-winning drama talks about his life and the injustice still experienced by others.
Thalidomide victim Terry Wiles - 50 years on


Terry Wiles - victim of thalidomide, photo by David White

Terry Wiles turned 50 this year. Nobody expected him to live this long. But here he is, very much alive, sitting in the sparsely furnished lounge of his modern but modest Papamoa house, where he lives with his wife, Robyn, and Mel the dog. Wiles doesn’t have a paid job but describes himself as an ambassador. He loves people and he loves technology. He loves his iPad and he loves the internet. Wiles doesn’t have any arms or legs. He has one eye and two flipper-like feet. He also has a big heart, a big brain and, as you soon discover, a rather large mouth. Mum was 17 when she gave birth to Wiles in Britain in 1962. Like many other mothers in the late 1950s and early 1960s, she had been taking the drug thalidomide to relieve morning sickness. Thousands of babies in Britain and around the world were born with severe disabilities as a result of the drug, but the damage done to Wiles was at the extreme end.

The thalidomide scandal has been around as long as Wiles has. This year marks the 50th anniversary of the exposure of its horrors. Wiles received a compensation payment in the UK in 1973. Incredibly, some victims are still waiting, including 10-15 New Zealanders who have joined a class action being taken against the UK distributor, Diageo. Wiles is urging them on. “Get on with it. Do it. [The company has] a moral obligation to these people.” It seems unbelievable that justice could be delayed for half a century, but not to Wiles. “Man is a predator. Man is a devourer of other men. Man is quite good at sidestepping his responsibilities when he wants to,” he says, mixing heavy philosophy with dark humour. Wiles has been an ambassador for thalidomide victims virtually all his life. When still a child, he was the subject of a famous book by Marjorie Wallace, called On Giant’s Shoulders. A television drama of the same name won an Emmy Award in 1980. There have been numerous films, stories and documentaries over the years and a parade of visiting journalists.

HUMOUR AS A WEAPON

Wiles has found himself advocating not only for the disabled but for other marginalised groups. “When you are a minority – and I am – you have a social conscience, you have an awareness. You have to. You are naturally political,” he says. “I think I am quite angry,” he says, laughing, displaying no anger. “I have to empathise with prisoners’ rights and gay rights and women’s rights – it’s always been that way.” Humour is the biggest weapon in his arsenal. “Confrontation doesn’t work for me anyway. I’ve got no arms or legs, so I’d get smacked in the face.” He picks the target most likely to prove his point and fires his barbs under a cloak of laughter. It isn’t long before he lines up his visitor.

“It’s your fault. You media people. You still haven’t learnt. Stop saying inspirational. It pisses us off. It pisses me off,” he says. “It’s patronising. I don’t want to be inspirational. I know you mean it in a genuine way but I don’t want to be f—en inspirational. I just want to live my life and have an opinion,” he says, enjoying the wind-up. “It’s really hard when you say I am inspirational. You are putting a lot of stress on me, because then I have to be good. I don’t want to be good. I just want to have fun and have a laugh and get pissed and fall out of my wheelchair.” He warms to his theme, adopting the faux-serious voice of a gravitas-enhanced television frontman reporting from the field. “‘He is incredibly living his life despite being confined to a wheelchair,’” he mimics. “I am not confined! I am not tied in! I am not bound!” And for God’s sake don’t mention disabled athletes. “I know we can do anything. It is not what people need to know. What people need to know is how we can do the little things. That’s important. Like how do you handle drinking a cup of coffee? That’s important to me. How do you talk to someone? That’s important to me. Not whether I can win a gold medal.”

SHOCKS IN THE OUTSIDE WORLD

Thalidomide victim Terry Wiles as a child

Terry Wiles as a child on one of the “Supercars”

He never knew his biological parents. Wiles blames his dad for abandoning him, rather than his teenage mum. “I think my father was an arsehole, evidently. He didn’t want me.” He lived in a care facility in Sussex during his early childhood and it was a shock to see the outside world. “It was like another planet – it was like you going to Mars – when I first had a really conscious idea,” he says. “That was like, f— me! Wow! These people are all walking around.” Hazel and Len Wiles adopted Wiles. He remembers telling them he would do the washing up one day soon because his arms would grow. No, he was told, they won’t grow. “Boom. It was like being told you are never going to fly. So that was pretty mind-blowing. I thought, ‘Well, I better think about what the f— I am going to do now, hadn’t I?’”

Wiles laughs his bitter-sweet laugh. He’s full of theatrics. He whispers and mimics and teases. The British accent has endured, although he has picked up the Kiwi vernacular in the 20-plus years he’s lived here. “Later, bro,” he says to a departing friend. “Sweet.” Thalidomide children weren’t supposed to live as long as Wiles has. “Everybody thought that we would just die young, so we keep disappointing them.” There’s a serious consequence of that, too. The payouts to the British children weren’t based on this sort of lifespan and many of them weren’t well managed. “A lot of parents who had us were quite poor. There weren’t many rich parents, so they suddenly had all this money,” he says. “If your parents blow it, you are kind of screwed, really.” When the thalidomide children grew into adults, that created its own issues, including some for the parents. “Because of the shame, a lot of parents didn’t have carers. So our parents were our caregivers, and that’s a situation that got out of control, because the parents couldn’t let go. So you are like a permanent child. “What you found was all these kids turning 18 and you had all these civil wars going on in houses, because the kids are saying, ‘Oi, I want to go and have sex’, and Mum is saying, ‘But you’re only 12.’ I am not 12!” So, how much money was paid out? “How do you price my arms and legs?” he asks, rendering the question redundant and then obscene. “I didn’t ask to be here.”

ALIENATING THE ABLE-BODIED


Wiles met Robyn in 1986 at a conference for disabled children. She is an able-bodied woman who left her husband to be with Wiles. There was huge opposition to the marriage from family and friends. “A lot of my friends disappeared when we got together,” Wiles says. Ultimately, he lost his adopted parents, too: they returned to Britain a few years after the wedding was held in New Zealand. Wiles says the union of a severely disabled man and an able-bodied woman alienated people. Well, it alienated able-bodied people, anyway. “I have stretched beyond who I am. I am not just a one-dimensional person. I am not just a person in a wheelchair. I’m in a relationship. I am in your territory now and that scares you a lot.” Robyn joins us now and then in the lounge to listen to us talk – she wafts in and out of the conversation. Mel the dog is unmoved by it all and has prime position on the couch. Robyn has made tea. Then the photographer arrives and she makes coffee. Oh, and that’s the other thing. Wiles is gay. Robyn is cool with it. Wiles’s parents? Not so much. “That was really, really hard for me, but I think that is the same for a lot of disabled people. We are not supposed to have sex. It’s not normal,” he says, exaggerating for effect. “People just don’t want to know. It scares people. It frightens people.”

Being in a minority – several of them in fact – gives Wiles a good sense of how people perceive things. He says there is a hierarchy of how disabled people are seen. Paraplegics are at the top, he says with a hint of wickedness. Then the blind and the deaf. Thalidomiders – he hates the word – are at the bottom. “If you are para, you are just a person sitting down, right? If you are blind, you still look normal.” Wiles certainly doesn’t look normal. No use pretending about that. You shake his foot when you meet him. It’s a confronting sight and he knows that. “We are mirrors and people think, ‘That could happen to me.’” He hopes people will see beyond that to who he actually is. “When I do talks, I often say at the start, ‘You can’t see me at the moment. All you see is the wheelchair – that is all you see at the moment, but as I talk you see me.” And he’s right. You do.

THE LANGUAGE OF A DIPLOMAT

Wiles has spent a lifetime trying to get people to see him and other disabled people. “I am an ambassador for who I am. I have to be. I am a diplomat.” Yes, although the language is sometimes more drunken sailor than special envoy. “I was sitting in a pub once in Putaruru. Just having a drink. And this guy walks up and just sits down and starts talking to us, which I thought was pretty cool. And he says, ‘So, how do you have sex?’ And I said, ‘Probably better than you, dude!’” If you walked up to most people and asked that, you get punched out, he says. “But people think nothing of it. Where is your self-awareness, dude? Where is your head at?” His condition is mostly unrecognised in New Zealand because so few were born with it here. “Some people are completely gobsmacked and say, ‘Were you in an accident?’ I say, ‘Yeah, I was in Vietnam.’” He shrieks with laughter. Robyn laughs, too, from across the room. “I was Special Ops. It was a tough mission. Got hit by a water buffalo. They say: ‘Really?’ I say: ‘No, not really, I am full of shit.’ That’s always fun.” He slides down from his wheelchair and grabs his tea, which must be nearly cold given the length of time we’ve been talking. He clasps the cup in his teeth, tilts his head back and gulps it down. Wiles’s guest takes a drink, too, and laughs with him. But it sounds forced, like he is trying a little too hard to be comfortable. The tea has almost lost its warmth.

DAY-TO-DAY LIFE

So, what’s life like? Day to day. No arms. No legs. One eye. “It can be pretty isolating. I can’t get a job. I am trained as a counsellor, but I can’t get a job because people don’t see past the toileting part and that is really frustrating and annoying because I would love to work with kids and I like people,” Wiles says matter of factly. “I have often been quite lonely. I don’t expect people to drop their lives and come running around after me, but I think we should slow down just a bit and just chill.” Technology has changed his life. His inventive father made little cars for Wiles based on a forklift, which allowed him to whiz around and adjust his height. Nowadays, the internet has opened up the world to him. “Yeah, it has, but you can’t hug a computer.” He is willing the inventors and scientists to keep going, holding out hope for a time when stem cell research allows him to grow limbs.

“Technology is fantastic. I love it. I can’t wait for implants. That would be awesome. Growing arms and legs. I’d be the first one in line. Hell, yeah. Absolutely,” he enthuses. “People say, ‘Don’t you want to be the way you are?’ F—no. I want to run and thump you. It’d be great. It’d be cool.” He’s joking, of course. Wiles doesn’t really want to thump anyone, not even the dreaded journalist. He does get frustrated, though, when the media talks about thalidomiders, as though that unites them as people and separates them from the able-bodied. “Okay, I am disabled. So what? That’s okay. But you are not my enemy; you are not the opposition. Sometimes you behave like the opposition and you need a slap to the side of the head, but mostly people are not your enemy. You are someone I don’t know, maybe. That’s cool, so maybe I should get to know you. “You are able-bodied. I am disabled. So, we’re different. I know that. Every day I know that. You don’t have to tell me that. But why can’t I be your friend?”

A dark matter


Thalidomide is still used today despite its terrible history

Thalidomide - Heinrich Mückter (right) in 1970 - one of the scientists with his name on thalidomide's patent

Heinrich Mückter (right) in 1970

Thalidomide has a dark history. It was developed by German manufacturer Grünenthal and launched in 1957, initially as a painkiller and tranquilliser, then as a remedy for morning sickness. Several experts who have researched the drug’s history, including Martin Johnson, the director of the UK’s Thalidomide Trust, say there is at least circumstantial evidence to say the drug was developed in prison camps by the Nazis. Professor Ray Stokes of Glasgow University has also pointed out that a Nazi Party member, Heinrich Mückter, is one of the scientists with his name on the drug’s patent. Grünenthal was in the news again recently after the discovery of documents that appear to show the company had known and covered up warnings that its product could harm unborn babies. While the drug was still being marketed between 1959 and 1961, German doctors were warning it was causing birth defects.

An excerpt from one file, published in the Sydney Morning Herald, says eight of Grünenthal’s employees had deformed children between 1959 and 1961. The drug was taken off the market in 1961 and compensation was paid to British victims in the early 1970s. But in other countries progress has been slow. In 2010, 45 New Zealanders and Australians reached a settlement with thalidomide’s UK distributor, Diageo, in a pro bono case brought by Australian law firm Slater & Gordon and Gordon Legal. But others still have to prove their case. Last month, an Australian thalidomide victim, Lynette Rowe, got a multimillion-dollar settlement with Diageo and this has opened the door for other victims. About a dozen New Zealanders have joined a class action of 120 or so Australians still seeking compensation. Lawyer Michael Magazanik is handling the case and has travelled to New Zealand to interview witnesses and survivors. Grünenthal is refusing to be part of the settlement.

Thalidomide is now making something of a comeback. Now called Thalomid, it contains what are known as immuno-modulating agents that act on cells in the immune system. It is being used in New Zealand to treat bone marrow cancer for patients over 65 and those who cannot receive high doses of chemotherapy. It is also used to help treat skin symptoms associated with leprosy. A New Zealand Consumer Medicine Information leaflet says even a single dose of this very powerful drug can cause severe defects when taken during pregnancy.

Fiercely independent

He may have no arms and short legs but there’s not much that Barry de Geest hasn’t done.
Thalidomide victim Barry de Geest says mainstreaming was a big help

NZ thalidomide victim Barry de Geest, photo by David White

Barry de Geest is perhaps the best known of New Zealand’s thalidomide victims. But victim is probably not the right way to describe him. De Geest grew up in Oamaru and, despite having no arms and short legs, went to a regular school. He credits mainstreaming with exposing him to opportunities he might not otherwise have had. In high school he was a gifted rower and his Oamaru Rowing Club team won a New Zealand title. He left home at 18 to study at the University of Otago and he’s been fiercely independent ever since. There’s not much he hasn’t done. He’s been a single dad, a rifle marksman and a business owner. He drives a custom-built van with a steering wheel that turns as he leans – a gizmo he helped design. He is the co-owner of Renaissance Group, which helps disabled people in Auckland get more out of their lives. Renaissance is now a significant business, with more than 90 staff. He is also co-owner of One2One, a home-care group, and he’s just launched a range of wheelchairs under a new business label, Unarmed Enterprises. He’s a regular public speaker, media commentator and advocate for the rights of disabled people.

Now 51, de Geest got a compensation payment of just $30,000 when he was 17. That was topped up in a 2010 settlement with thalidomide distributor Diageo. He points out that thalidomide victims of his age often missed out because they were born before ACC came into existence in 1974. It is “sickening”, he says, that thalidomide manufacturer Grünenthal is resisting contributing to settlements. The pharmaceutical giant has made billions in profits and has a moral duty to act, he says. “They thought, ‘If we hold out long enough, they will all die.’”
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#16 User is offline   hukildaspida 

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Posted 20 December 2013 - 04:33 PM

Settlement for thalidomide victims
Last updated 15:47 02/12/2013

http://www.stuff.co....idomide-victims

A class action by New Zealand and Australian victims of the morning sickness drug thalidomide against its manufacturer has been settled for A$89 million (NZ$99m).

The settlement of the class action taken against German pharmaceutical company Grunenthal, and thalidomide's Australian distributor, Distillers, bought by British company Diageo in 1997, was announced in the Victorian Supreme Court today.

''It's been a long time coming,'' lawyer Peter Gordon told Justice David Beach.

Will you or someone you know benefit from the settlement? Click here to contact us

Gordon said the settlement had been reached after months of negotiations following a confidential multimillion-dollar settlement reached between thalidomide victim Lynette Rowe, who was born without arms and legs, and Diageo in July last year.

Rowe was in court on Monday with her parents to see other thalidomide victims finally get justice.

Gordon told the court it had been agreed that more than 100 people from Australia and New Zealand in the class action would be paid A$89 million, plus A$6.5 million in costs, subject to court approval.

The matter was adjourned to February 7 when it was expected to be formally approved.

Barry de Geest,
one of New Zealand's most high-profile victims, said the settlement was great news for those that had never received compensation.

He had not been involved in the suit as it was only for those who had never been compensated.

He believed about five New Zealand victims would receive money.

Although it was a positive outcome for some of the victims, it was a bittersweet deal as it meant the separate class action against Grunenthal would be dropped.

"The fact that Grunenthal are never going to be made accountable for it, that they did this to us, that's the heartache."

He expected this to be the final chapter in the thalidomide nightmare, with victims now aged in their 50s.

In July last year Fairfax Media revealed the German drug maker ignored and covered up repeated warnings that thalidomide could damage unborn babies. Files from the Grunenthal archives exposed a 50-year global cover-up.

An estimated 10,000 babies worldwide were born with severe physical deformities because their mothers had taken thalidomide.

It was claimed the manufacturer developed, patented and brought the drug to the Australian market between 1950 and 1955 and declared the drugs "safe, non-toxic, without significant side-effects, suitable for children and babies, an effective treatment for nausea, sleeplessness and anxiety, and on which it was impossible to overdose".


The plaintiffs claimed the defendants conducted inadequate research into the safety of the drugs and failed in their duty of care to adequately warn consumers of the associated risks.

Rowe was born in 1962 after her mother, Wendy Rowe, consumed the thalidomide drugs, marketed under the brand name Distaval, for about five weeks during the first trimester of her pregnancy. It was provided to her as a sample by her doctor.

Rowe's abnormalities include no arms or legs, narrowing of the ear canals, scoliosis, eye, mouth and dental abnormalities. She also suffered brain injury due to a febrile illness before she turned one and claims she has suffered pain, shock, depression and anxiety due to the drugs.

The lead plaintiff in the separate class action settled on Monday was Janelle Wendy Robbins.

Robbins' mother took thalidomide in about mid to late 1961 during the first trimester of her pregnancy with Janelle after it had also been provided to her as a sample by her doctor.

Grunenthal received between three and 10 per cent of of the sale prices of every thalidomide drug sold by Distillers in New Zealand and Australia.


Distillers agreed not to manufacture their own thalidomide in return for a discount on bulk purchases of the Grunenthal thalidomide.

In the statement of claim lodged by Robbins' lawyers, Grunenthal knew or ought to have known by or before April 1, 1959, that in Germany since 1958 [after the introduction of thalidomide drugs in Germany in 1957] there had been a significant increase in the number of babies born with congenital malformations.


- Sydney Morning Herald
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#17 User is offline   hukildaspida 

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Posted 20 December 2013 - 04:37 PM

This may be helpful for some whom may have been effected by Thalidomide.

Court orders Grünenthal Pharma SA to pay damages to thalidomide victims

http://www.lexology....de-3806e415b202

* Bird & Bird
*

Teresa Mercadal Menchaca
* Spain
*
* December 18 2013
* Bird & Bird logo

Background
Causal connection
Grünenthal Pharma SA's responsiblity for thalidomide in Spain
Victims entitled to be compensated


On November 19 2013 the Madrid First Instance Court No 90 issued a judgment condemning Grünenthal Pharma SA, the Spanish subsidiary of German group Grünenthal, to pay damages to some of the Spanish alleged victims of thalidomide.

Grünenthal Pharma SA is the successor of Medinsa, which marketed thalidomide in Spain. Thus, where this update refers to the selling of thalidomide in Spain by Grünenthal Pharma SA, it is referring to Medinsa.

Background


The judgment originated in a claim issued on February 17 2012 by the Association of Thalidomide Victims in Spain (AVITE). Laboratories Grünenthal started selling thalidomide in 1957 as a tranquiliser. The medicine could be used without a doctor's prescription and was also used by pregnant women to tackle pregnancy-related discomfort and nausea. Although the medicine was described as harmless, in 1959 it was discovered that many deformities and other health problems presented in newborns were due to the use of thalidomide by their mothers during a specific period of the pregnancy. Many of the affected persons died and others live or lived with difficulties.

According to the judgment, it was proven that Grünenthal Pharma SA, after becoming aware of the side effects of thalidomide, decided not to inform Spanish doctors of the reason for the interruption of thalidomide sales and to provide only partial information to its external agents – even though the parent company expressly said to its subsidiaries that the external agents should have detailed information regarding the problem in order to answer questions from doctors accurately. The withdrawal of thalidomide in Spain was ordered after it had been withdrawn in other countries (eg, Germany.)

A criminal procedure was initiated against Grünenthal in Germany, resulting in a judgment on December 18 1970.(1) Grünenthal was found not to be criminally liable, but had previously agreed to pay damages to the victims. In 1971 Grünenthal and the German government created the Contergan Foundation, and Grünenthal continues to pay pensions to victims through this foundation. A small number of Spanish victims are recipients of pensions from the foundation.

In 2010 some of the Spanish victims received compensation, described as supportive assistance, from the Spanish government. This was regulated through Royal Decree 1006/2010.(2) The compensation depended on the degree of disability and was a one-off payment of between €30,000 and €100,000. To receive the compensation, the link between the disability and thalidomide had to be certified by the Instituto de Salud Carlos III.

The Madrid court's judgment of November 19 2013 identified victims of thalidomide to which Grünenthal Pharma SA should pay damages as only the persons who had received compensation from the Spanish government under Royal Decree 1006/2010 and who do not received a pension from the Contergan Foundation. In particular, the judgment ordered Grünenthal Pharma SA to pay them compensation of €20,000 per degree of disability plus interest from the filing of the claim (incremented in two points from November 19 2013).

This update examines the reasoning of the judgment.

Causal connection

No need for specific evidence due to notoriety and study of thalidomide effects during pregnancy
AVITE filed no expert reports proving the link between its members' disabilities and thalidomide. However, the court considered that "[t]he notoriety of the fact and the thorough study that has been done on the phenomenon over the last 50 years exempt the plaintiff to prove the harmful effects of thalidomide and the harmful consequences of their intake by pregnant women".

Mere compliance of administrative and labour rules does not negate liability
Following the doctrine of the Supreme Court, the judgment noted that mere compliance with the relevant administrative and labour rules does not exempt the laboratories from civil responsibility with regard to the harm caused by the medicines that they offer.

Today, strict pharmacovigilance rules are imposed on laboratories. The legislation was not so strict for laboratories 50 years ago but, as stated by the first-instance court, the laboratories were responsible for damage caused by their medicines, even though they had complied with administrative and labour legislation.

The court highlighted that Grünenthal Pharma SA had filed no evidence to prove that the manufacturer had complied with scientific requirements and current knowledge.

Value of Grünenthal's public assumption of responsibility

The judgment considered that Grünenthal's public assumption of responsibility for the manufacture, distribution and consumption of thalidomide prevented Grünenthal Pharma SA from alleging that Grünenthal had a duty of diligence regarding the medicine.

Grünenthal Pharma SA's responsiblity for thalidomide in Spain

AVITE filed the claim against Grünenthal as a group. Grünenthal Pharma SA was the only company of the group which answered to the claim, and it answered only in its name. The judgment explained that there was no proof regarding either the judicial personality of the group or the identification of each company included on it. Therefore, Grünenthal Pharma SA was the only company considered to be a defendant in the judgment.

Grünenthal Pharma SA argued that its predecessor, Medinsa, was only a retailer of thalidomide in Spain and was not the sole retailer of the medicine in Spain. The judgment held that it was proven that Medinsa was a subsidiary of Grünenthal in Spain, so it should assume responsibility to the customers of products that it commercialised in Spain. Furthermore, it was proven that Medinsa decided not to inform Spanish doctors of the reason for the interruption of thalidomide sales and to provide only partial information to its external agents. Moreover, the information leaflet expressly stated that the medicine was harmless, which led to customer expectations. In this regard, the judgment held that Medinsa, now Grünenthal Pharma SA, was responsible for the information that was provided to customers of the marketed product.

Victims entitled to be compensated


The judgment identified victims of thalidomide to which Grünenthal Pharma SA should pay damages as only those persons who had received compensation from the Spanish government under Royal Decree 1006/2010 and those who receive pensions from the Contergan Foundation. This implies that only a small number of people who do not already receive a pension from Grünenthal Pharma SA will benefit from compensation, according to the first-instance judgment. AVITE had claimed compensations for 186 persons.(3)

The judgment criticised the fact that AVITE had filed no evidence regarding the persons who received government compensation, but decided to admit the filing of each administrative resolution granting their compensation at the time of the judgment's execution.

AVITE also asked the court to order Grünenthal Pharma SA to compensate all of AVITE's associates recognised as victims of thalidomide through an administrative resolution or a judgment. The court considered that there was an error in AVITE's request regarding its associates who had not received compensation from the government. In particular, the judgment rejected the compensation regarding such people because AVITE had not individualised the damage that each person had suffered, and this was factually possible. The judgment referred to the lack of evidence filed by AVITE in this regard, such as a medical report or administrative rulings recognising the level of disability.

The decision is not yet final, as the parties may appeal within 20 days of receiving notification of the judgment.

For further information on this topic please contact Teresa Mercadal Menchaca at Bird & Bird by telephone (+34 91 790 6000), fax (+34 91 790 6011) or email ([email protected]). The Bird & Bird website can be accessed at www.twobirds.com.
Endnotes

(1) A Spanish translation is available at http://www.avite.org..._contergan.pdf.

(2) See http://www.boe.es/di...E-A-2010-12626.

(3) "First sentence in Spain for thalidomide malformations", El Pais, November 20 2013.
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#18 User is offline   hukildaspida 

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Posted 27 May 2014 - 05:07 PM


Thalidomide: The Fifty Year Fight, BBC Two, review: 'engrossing and moving'


The documentary was touching but failed to recognise that the most remarkable “fights” are the struggles of the Thalidomiders’ daily lives, says Tom Rowley

http://www.telegraph...and-moving.html

By Tom Rowley

10:00PM BST 15 May 2014

Comments Comments

Since the late Fifties and early Sixties, those who suffered severe birth defects because their pregnant mothers took the Thalidomide drug for morning sickness have been followed by film crews and newspaper journalists. The documentary Thalidomide: the Fifty Year Fight (BBC Two) caught up with some of the 468 British survivors five decades on.

Some were only slightly affected, others were born with no arms and no legs. Archive footage showed a young boy inching painfully out of a toy car with no limbs for support, and a teenager struggling to balance on his makeshift prosthetic legs, giving a fresh shock to their suffering. However, the eloquence with which the Thalidomiders (as those affected now call themselves) described their struggles was uplifting, and it was touching to see the clever adaptations – such as specially designed cars – that have made their lives a little more comfortable over the years.

READ: Thalidomide is still casting dark shadows 50 years on

It was curious, then, that the insightful interviews did not dominate. Rather than exploring how their lives have changed over the decades, and their hopes for the future, the Thalidomiders were often sidelined in favour of journalists who retold the story of their battle for compensation.

Instead of documenting a “fifty year fight”, as the title insisted, the bulk of the film replayed the decades-old wrangling between Distillers, who distributed the drug in Britain, and David Mason, one of the parents. It did so engrossingly and movingly, but it left too little time to explore the lives of those affected over the last 25 years.

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In fact, the freshest part of the “fight” was only discussed at the very end. The survivors’ ongoing attempts to extract compensation from the German manufacturers, Grunenthal (which has apologised but denies it could have known about the drug’s side-effects) could have made a riveting programme in itself but was instead neglected until the final three minutes, as a postscript to a new edition of a history that could have been written decades ago. For a documentary that celebrated the role of campaigning journalism in holding Distillers to account, this was an odd decision.

TIMELINE: It has taken half a century for the victims to receive an apology from Thalidomide's inventors

This was an elegant summary of “one of the dirtiest pieces of litigation”, but it failed to recognise that the most remarkable “fights” are the triumphs and struggles of the Thalidomiders’ daily lives, not the manoeuvrings of a courtroom.

READ: 'IS THIS THE FORGOTTEN THALIDOMIDE?'
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