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2010 - THALIDOMIDE UK WEBSITE IS UNDERGOING MAJOR UPDATES

 

What Is Thalidomide?

 

The drug ‘Thalidomide’ was mainly prescribed to pregnant women for morning sickness in the late 50s and early 60s. Instead the drug caused severe deformities in babies with missing limbs.

 

 

Some thalidomiders were also born with internal deformities. It’s estimated that over 3,500 babies died before their first birthday. Thalidomide was invented in 1954 at the Grünenthal Labs in Germany by the inventors Dr. W. Kunz (chemical synthesis) and Dr. H. Keller pharmacological description of sedative properties).

 

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THALIDOMIDE UK WEBSITE

 

This website is dedicated to the history of the drug 'thalidomide' and  we explore the various disabilities that the drug caused to babies worldwide.

 

Since Thalidomide UK founded in 1993, against all odds, Diageo have put additional monies into the trust on three separate occasions. Payments are being made to provide some facilities (adaptation of properties/wheelchairs/cars, etc) to alleviate the problems.

 

The thalidomide disabilities was a man-made by a drug, which could have been so easily avoided if the manufactures and suppliers had carried out the adequate testing on the drug. Those who were responsible for the marketing of the drug did not have a care for human life.

 

Our website covers other issue surrounding the side-effects of all medicines and demonstrates how dangerous drugs can be if misused.

 

Freddie Astbury

(President/Founder)
(Medicines 'Teratogenic'
Regulatory Consultant)

 

 

 

 

One function of Thalidomide UK will be as an Advisory and a Monitoring Group regarding the use of thalidomide and similar drugs.  Our main aim is to reduce the likelihood of anymore babies been damaged by the drug thalidomide and other similar medicines being misused, which cause known birth abnormalities.

 

In 1985 when the world discovered that the drug thalidomide was being used in the treatment of leprosy and that babies were still being born in countries like Brazil, our immediate response was to call for the drug to be banned.

 

Over the years, most thalidomiders (please refer to vote online) have come to accept that if it can help people who suffer from number of illnesses then it must be used but only under the strictest guidelines such as a risk Management Programme.

 

In our ideal world, thalidomide would be banned, but we have to accept that we live in the real world. We believe that the best way forward is to work on Risk Management Programme like the European Pregnancy Prevention Programme and the STEPS Programme in the USA, with the manufactures and suppliers that would reduce the chances of more babies being damaged by the drug.

 

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WHY IS THALIDOMIDE USED

IN THE UK

 

UNDERSTANDING MYELOMA

 

(Please click on symbol below to view video)

 

 

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THALIDOMIDE UK NOW

AVAILABLE ON SKYPE

JOIN NOW

 

 

Thalidomide UK is now available on Skype in most countries. Webcam is also available, so for the first you can see your representative from Thalidomide UK, which aims to make you feel at ease and confidence when speaking to us.

 

INSTRUCTIONS FOR SKYPE MEMBERS

 

Please search for thalidomide.uk

THALIDOMIDE CAMPAIGNS

 

We will continue our campaign against those who we consider responsible for the drug thalidomide being marketed in 1958.

 

Full campaign listings click HERE

 

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Archives Photos

 

Over the years there have been a catalogue of photographs taken of thalidomide children. This section views many photographs of the thalidomide children and their fight against their disabilities.

 

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THALIDOMIDE UK VIEWS 

THE USE OF THE DRUG THALIDOMIDE

 

Thalidomide UK would like to the drug banned for the treatment of leprosy and in countries were the drug cannot be controlled or monitored.

 

We Do Not want the drug banned in countries where the pharmaceutical suppliers have involved European thalidomide survivors groups with the guidelines. Thalidomide UK believes that we should work towards licensing the drug, which would prevent it being easily available over the internet and would stop pharmaceutical companies supplying the drug with the side effect warnings being displayed on a little piece of paper which includes small print.

 

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Government Compensation

 

In 1958 the government granted the drug thalidomide to be licensed by Distillers Bio-chemical LTD, which caused hundreds of deformities in babies in the UK. The government have always refused to pay the survivors any compensation.

EU backs return of banned drug

Europe's drug regulators approved licensed for thalidomide to treat bone marrow cancer, nearly 50 years after the medicine was withdrawn as a treatment for morning sickness around the world because it caused thousands of children to be born with birth defects.

 

The European medicines agency granted authorisation for the medicine to be used to treat multiple myeloma in combination with other drugs, on condition that it was strictly controlled to avoid it being taken by pregnant women.

 

The decision follows extensive consultation including with a number of European associations of thalidomiders, who ultimately endorsed the approval after agreeing to strict safeguards.

It comes at a time when hundreds of the children born with defects caused by use of the drug are launching a campaign to boost compensation by governments and from Grünenthal, the German drug company that developed it in 1957.

 

The news marks a boost for Pharmion, the US pharmaceutical company that has researched new uses for the drug in recent years, and which has already won approval in the US, Australia and other international markets.

 

The decision was particularly sensitive in Europe, since the drug was developed and most extensively marketed there.

It will be a blow to several smaller manufacturers of the drug in Europe, which could be legally prescribed on a case-by-case basis by doctors. Only Pharmion will be allowed to sell it in the EU following the regulatory approval.

The governments of a number of EU countries with large numbers of victims, including Italy, have always refused to offer compensation, while Germany offers only modest monthly allowances.

Article : Jan 25, 2008 Financial Times

 

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(UK VERSION SOUND inc)

(PLEASE CLICK ON DAILYMOTION ICON)

 

 

 

 

WARNING - SOME PEOPLE MAY

FIND THIS DVD UPSETTING

 

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Medical Info

 

This page should ONLY be viewed by the Medical Profession, who require more information on the various disabilities of thalidomide.

There are some Medical photographs in this area, which have  never been seen before until now.  Warning - Please be aware that you may find some of our photographs upsetting.

 

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Thalidomide Worldwide .Com

 

Currently being updated.

 

View all the thalidomide website worldwide that have agreed to link together offering more information regarding this unique disability.

 

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The 70s Settlement

 

 

 

The Sunday Times (UK) lead the original campaign on behalf of the victims in the 60s.

A British thalidomider born without arms and legs receives approximately £22,000 a year from their trust fund.

The settlement made by Distillers to the victims were the lowest medical claim ever awarded in the UK.

It’s important to remember that the drug thalidomide was man-made and so were the thalidomide disabilities. 80% profits for Diageo's comes from the take-over of Distillers.

 

 

 

 

British Government

 

 

The government granted distillers a UK product License for the drug thalidomide. The government have never paid any compensation for licensing the drug, however they have donated some monies first in 1974 £5million, which was to offset the tax then £7million in June 1996 - no clear reason was ever given for this donation.

 

£20m and an apology for Britain's 'thalidomiders'

 

Thursday, 14, Jan 2010 12:00

 

 

Health minister Mike O'Brien has expressed the government's "sincere regret and deep sympathy" for victims of the drug thalidomide.

It comes four decades after expectant mothers suffering from morning sickness took the drug between 1958 and 1961. Thousands of their offspring suffered from physical disabilities as a result.

Of them, 466 members of the Thalidomide Trust remain. The government has announced a £20 million three-year pilot scheme which will meet survivors' needs "in a more personalised way".

Mr O'Brien told MPs: "The government wishes to express its sincere regret and deep sympathy for the injury and suffering endured by all those affected when expectant mothers took the drug thalidomide between 1958 and 1961.

"We acknowledge both the physical hardship and the emotional difficulties that have faced both the children affected and their families as a result of this drug, and the challenges that many continue to endure, often on a daily basis."

The new funding for 'thalidomiders' will prioritise looking after their health needs for the long-term.

After the drug's negative side-effects were first realised the government launched a major review of the machinery for marketing, testing and regulating drugs, which resulted in the Medicines Act 1968.

 

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Thalidomide victims gain £3.4m to fight disability

Published Date: 26 February 2010
By Angus Howarth - The Guardian


VICTIMS of the thalidomide scandal will be given extra help through a £3.4 million fund announced by the Scottish Government yesterday. The money will be spent over three years to alter homes and buy specialist equipment. Pregnant women were prescribed the drug between 1958 and 1961 as a treatment for morning sickness or insomnia. It was withdrawn from sale after babies were born with limb deformities and other disabilities. There are 55 known thalidomide survivors in Scotland who can benefit from the money pledged by ministers. The health secretary, Nicola Sturgeon, said yesterday: "Half a century later, the survivors of thalidomide are still battling against the disabilities the prescribing of the drug caused."

Liz Buckle, 49, a thalidomide victim who lives on the island of Lismore, near Oban, said: "As a Scottish thalidomider, I very much welcome the positive response from our government. They have acted with integrity."I look forward to working together with the Scottish Government to the benefit of thalidomiders and others."

The UK health minister, Mike O'Brien, announced a £20m fund last month, when he apologised for the scandal surrounding the drug's history.

 

£1.9m for thalidomide survivors in Wales

 

26/2/2010

 

First Minister Carwyn Jones will today announce £1.9million for the Thalidomide Trust to improve the care and support for thalidomide survivors in Wales.

The funding which will be available from April will be distributed amongst survivors to help meet their health needs and minimise any further deterioration of their condition.

This funding will be in addition to £20million announced by the Department of Health last month for the Thalidomide Trust for a pilot scheme to support thalidomiders, as they refer to themselves.

Between 1958 and 1961, the drug, thalidomide, was used by expectant mothers to control symptoms of morning sickness. Tragically, this led to many babies being born with often severe physical disabilities. There are 31 thalidomiders in Wales.

The First Minister, who will meet thalidomide survivors in Gorseinon, Swansea today,
said: "I believe that addressing the ongoing needs of thalidomiders rests with the UK Government as it authorised the use of thalidomide.

"While survivors in Wales will have access to a share of the funding announced by the Department of Health, I wanted to provide additional funding to ensure that people affected by thalidomide in Wales receive the care and support they need.

"I am pleased that the UK Government has expressed its sincere regret and deep sympathy for the injury and suffering endured by all those affected when expectant mothers took the drug between 1958 and 1961.

"The funding I am announcing today will help thalidomiders manage the continuing and increasing health needs as they get older.

"We will be working with the Thalidomide Trust on how this funding will be distributed to maximise the benefits for individuals."

 

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The Numbers: The Thalidomide Trust

Third Sector, 2 March 2010

The figures behind the charity which provides relief and assistance to people suffering from congenital disability because of Thalidomide.
£12.4m - The charity's income for the financial year ending 5 April 2009, broadly in line with its income in the previous year
£7.4m - The sum received from drinks firm Diageo in the financial year. It contributes annually to the trust, which was set up after a settlement with Distillers (Biochemicals), the firm that distributed Thalidomide in the UK, now owned by Diageo
466 - The number of beneficiaries the charity helps
£9.96m - Total grants made by the trust in the year, compared with £13.1m the year before
-18.1% - Total return on the charity's investments in the financial year. The value of assets fell from £120.1m to £97.1m
£282k - The cost of investment management during the year
£100k - No employee was paid more than this
10% - Maximum percentage of pensionable income contributed to employees' pension schemes.
 

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Accutane or Roaccutane

(generic name isotretinoin)

 

Hundreds of drugs still pose the risk of birth abnormalities. It is a retinoid, meaning it derives from vitamin A and is found in small quantities naturally in the body.

 

Accutane, or Roaccutane (generic name isotretinoin) Amnesteem are members of a family of drugs called retinoids which are known to cause a number of very serious birth defects, and has been implicated as a possible cause of cleft lip and cleft palate. Isotretinoin is derived from vitamin A.

 

Oral isotretinoin is marketed under various trade names, most commonly Accutane (Roche), Amnesteem (Mylan), Claravis (Barr), Decutan (Actavis), Isotane (Pacific Pharmaceuticals), Sotret (Ranbaxy), Oratane (Genepharm Australasia) or Roaccutane (Roche), Izotek (BlauFarma); while topical isotretinoin is most commonly marketed under the trade names Isotrex or Isotrexin (Stiefel).

 

What is even more terrifying is that the drugs are aimed at teenagers for the treatment of ACNE.

 

Accutane and Roaccutane This drug is NOT manufactured by Celgene the suppliers of Thalidomide or Revlimid, but the pharmaceutical giants Roche.

 

Celgene, however is the owner of the business process patents on components which will be essential elements of the new isotretinoin RiskMAP. Celgene is not involved in the strengthened isotretinoin RiskMAP aside from the patent negotiations.
 

In US the U.S. Food and Drug Administration 'FDA or USFDA' (an agency of the United States Department of Health and Human Services and is responsible for regulating and supervising the safety of foods, dietary supplements, drugs, vaccines, biological medical products, blood products, medical devices, radiation-emitting devices, veterinary products, and cosmetics) has insisted that the drug has a stronger Risk Management Programme than used in the past.

 

The new Risk Management Programme is called

 

iPLEDGE.

 

The iPLEDGE program is a mandatory distribution program in the United States for isotretinoin (commonly sold under the trade names Accutane, Amnesteem, Claravis or Sotret), intended to prevent the use of the drug during pregnancy due to the high risk of birth defects.

 

iPLEDGE VIDEO

(Please click on symbol below to view video)

 

 

 

iPLEDGE

(Risk Management Programme)

 

Revised October 28, 2005: The implementation dates of the iPLEDGE program have been revised. The date by which wholesalers and pharmacies must be registered /activated in IPLEDGE has been changed from November 1, 2005 to December 30, 2005. By March 1, 2006, only prescribers registered and activated in iPLEDGE can prescribe isotretinoin and only patients registered and qualified in iPLEDGE can be dispensed isotretinoin. Patients can begin registering and qualifying on December 30, 2005.

FDA has developed stronger requirements to prevent foetal exposure to the drug Accutane (isotretinoin) along with its generic equivalents, such as Amnesteem, Sotret and Claravis. Isotretinoin is used to treat severe, recalcitrant, nodular acne, but it can cause serious birth defects if taken by pregnant women.

 

 

 

 
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