A new birth defect scandal, surrounding German manufactured Primodos, is brewing. Superficially this appears to be a 40 year old cover up of problems potentially caused by Primodos that was a pregnancy testing drug produced by Schering AG, a German company now owned by Bayer.
Until more information comes to light it is more appropriate to look at the current situation of the UK Thalidomide charities.
The German drug company Chemie Grünenthal gmbh developed and sold Thalidomide, also known as Contergan and Distaval, as an anti-emetic suitable for morning sickness and a “wonder drug” for insomnia amongst other uses. The UK sales and distribution was via Distillers Ltd now part of Diageo. Diageo have stood by the Thalidomide Trust and donate over £10m per annum with a similar level of funds donated from the UK Health Department. In fact the trust income over the last 5 years has been a staggering £125m.
Since the first problem cases in 1959 up to 20,000 children and families have been affected by numerous miscarriages or were born with some kind of disability due to damage caused by thalidomide. The Thalidomide Society (231708) was formed in 1962 by the parents of children affected by the drug thalidomide. The original aim of the Society was to provide mutual support and a social network as well as to seek compensation. The Thalidomide Trust (266220) was established in 1973 for the care, welfare, treatment and education of relief of the disabilities of or to meet the needs of children suffering from congenital disability due to thalidomide. It provides relief and assistance to its beneficiaries through financial assistance and support services in support of 467 victims. There is still £137.8m reserves left even after exorbitant legal & finance costs stretching in to the millions of pounds.
In 2004 HM Government passed a Statutory Instrument which allows distributions from the Trust to be paid free of income tax and all distributions to beneficiaries were paid under these terms and no income tax liability arose.
Survivors in the UK have had a life-long battle for compensation from the German government to allow UK survivors to access a special health fund set up to help Germany’s own 2,700 thalidomide victims.
After 50 years and much pressure The European Parliament voted in November 2016 in favor of a non-binding motion supporting victims who have not been compensated more than 50 years after their mothers took the drug to combat morning sickness, with devastating results. The parliament motion urged ‘…the German Federal Government to use the opportunity presented by the forthcoming amendment to the Thalidomide Foundation Act to allow thalidomide survivors, who have been accredited as such by court-appointed trust schemes or are beneficiaries of national government schemes, to access the Special Health Fund of the German Thalidomide Foundation for People with Disabilities;
It specifically covers some 2,700 German thalidomide sufferers, 500 in Britain and Italy, 200 in Spain and 100 in Sweden. More importantly it formally seeks to redress inequities and responsibilities previously ignored or badly acknowledged.
- Charity is not consistent, always equitable or the best way to resolve an issue.
- National interests and different cultures can complicate the public interest in charitable support and understanding.
- The natural inclination is to trust; doctors, charities, professionals and governments (but not politicians).
- Medical discoveries and new treatments may supplant or improve outcomes sometimes by new charitably funded research and such endeavours should be encouraged not be discouraged.
- Accepting responsibility and accountability takes far too long. There is often a culture of cover up and obfuscation even when dealing with serious individual harm.
- Despite Thalidomide and Promodos other medications with side effects are available. Remain vigilant!