We have compiled a list of frequently asked questions about thalidomide below.
We also have a timeline of events relating to the History of thalidomide.
The first thalidomide-affected baby was born in Germany on 25 December 1956 to a Chemie Grunenthal employee.
It is difficult to find accurate figures on the number of babies born with thalidomide damage as many were not carried full term. Some were still born or died very soon after birth. It is widely believed that as many as 100,000 babies were affected by the drug in total. It is generally estimated that over 10,000 babies were born worldwide and today fewer than 3,000 survive.
Thalidomide created a range of disabilities in babies including shortening and absence of limbs, malformation of hands and digits, damage to ears and eyes, sensory impairment, facial disfigurement/palsy and damage to the brain, internal organs and skeletal structure.
Throughout the years, babies have been born with disabilities which are similar to the disabilities caused by thalidomide. For example genetic conditions such as Holt-Oram Syndrome and TARS syndrome affect the upper limbs; Poland’s Syndrome affects the hands; and Talipes Equinovarus affects the foot and ankle. This is one of the reasons that the link between thalidomide and the birth defects it caused was not made straight away.
Recent evidence shows that a number of reports saying that thalidomide was damaging babies in the womb were ignored by Chemie Grunenthal. However the first time the link between thalidomide and birth defects was made public was in a letter published in The Lancet from an Australian doctor, William McBride, in 1961. The drug was formally withdrawn by Chemie Grunenthal on 26 November 1961 and a few days later.on 2 December 1961, Distillers, the UK distributors, followed suit.
The drug was licensed in the UK from April 1958 until December 1961. It was distributed in the UK by the Distillers Company (Biochemicals) Ltd (‘Distillers) under the brand name Distaval.
There are currently 466 people in the UK who were affected by thalidomide and are beneficiaries of The Thalidomide Trust.
Many babies born with thalidomide damage have grown up to have fulfilling lives with partners, able-bodied children and jobs they enjoy. However years of having to compensate for their disabilities and use of their bodies in ways that they weren’t designed for have taken their toll.
Research shows that thalidomide-affected people experience significantly poorer physical health than people of similar ages in the general population, Two-thirds reported their physical health was the same or worse than the lowest 2% of the general population.
The key health problems that have been highlighted through research are:
- pain – often severe and/or continuous (which is experienced by more than 90% of The Thalidomide Trust’s beneficiaries)
- reduced flexibility and mobility – in particular a reduced ability to reach, stretch, and bend which makes it difficult to undertake everyday tasks
tingling and numbness – which for many people results in a loss of strength/grip
- poor mental and emotional health – including depression and anxiety.
Many thalidomide-affected individuals rely on adapted vehicles, electronic wheelchairs, prosthetic limbs or specialised hearing aids/implants which are very expensive. Others have lost or seriously damaged their teeth by using them – instead of hands – to undertake a multitude of day to day tasks and now need expensive dental implants. It is also frequently necessary for them to adapt their homes to accommodate their disabilities.
Their thalidomide-related disabilities have also impacted on their ability to work as they get older – with over 40% unable to work because of their disability or health problems and around a quarter having to change their job or the type of work they do for the same reason.
No. Many thalidomide survivors have had children and, because their own disabilities do not have a genetic cause, they have not been passed on to future generations.
Initially no compensation was paid. However, in February 1968, following a legal battle led by their families, compensation (at 40% of the level of assessed damages) was paid to 62 thalidomide-affected children born in the UK by Distillers as a result of an initial (infant) settlement.
However this compensation was widely recognised as being completely inadequate and a high profile campaign was launched in 1972, led by the Sunday Times.
As a result, in 1973 a final settlement was agreed by Distillers. This includes a lump-sum payment for a further 367 children affected by Thalidomide in the UK (on the same basis as the initial 62) together with the establishment of the Thalidomide Trust to provide ‘support and assistance’ – including annual grants – to all Thalidomide survivors.
Since 2010, all beneficiaries of the Thalidomide Trust have also received a Health Grant from the Health Departments in all four nations of the UK to help meet the increased health needs caused by their Thalidomide damage.
As well as administering annual grants to all their beneficiaries, The Thalidomide Trust provides information, advocacy and advice on health and broader wellbeing issues to support beneficiaries in maximising their health, independence and quality of life. An important role of the Trust is to support beneficiaries who lack the capacity to make decisions, to ensure that their needs are being appropriately met. The Trust also funds a small number of research projects in order to fill evidence gaps and develop increased understanding of the needs of its beneficiaries.
The Thalidomide Trust’s Trustees and staff work closely with the National Advisory Council (NAC). This is a group of 12 beneficiaries elected by the beneficiary community, to ensure that the Trust is responding effectively to the needs of beneficiaries.
If you believe that you were damaged by your mother taking thalidomide during her pregnancy, you can contact The Thalidomide Trust to find out if you are eligible for their support. Please note that in the UK, thalidomide only affected people who would now be aged between 52 and 57.
Certain patterns of disability are widely recognised as having been caused by thalidomide. There are disabilities that look similar but have other causes. So even if you are aged between 52 and 57, your disabilities may not have been caused by thalidomide.
If you fall within this age range, your mother was in the UK when she was pregnant, and you think you have thalidomide damage, you can apply to become a beneficiary of the UK Thalidomide Trust. The first step is to complete this simple form and either post it to the The Thalidomide Trust, 1 Eaton Court Road, Eaton Socon, St Neots, Cambridgeshire, PE19 8ER or email it to email@example.com . Your application will be assessed by a team of experts.
Yes. Although each person receives an annual grant from The Thalidomide Trust (funded by the initial Distiller’s payment and additional funding from Diageo, the company formed in 1997 by a merger between Grand Metropolitan and Guinness – who took over Distillers in 1990) and a Government-funded Health Grant, thalidomide survivors still have significant unmet health needs – and these are increasing as they age.
As a result, a group of UK thalidomide survivors, led by members of The Thalidomide Trust’s National Advisory Council (NAC) are currently campaigning to get the German government to acknowledge the role it played in the thalidomide scandal and to address the funding gap that still exists. You can read more about their campaign here. http://www.fiftyyearfight.org/
If you are interested in finding out more about the history of Thalidomide in the UK, you can contact the Thalidomide Society by email (firstname.lastname@example.org) or by telephone (020 8464 9048) or you can visit their website: www.thalidomidesociety.org
Personal stories from UK thalidomide survivors can be found on the Thalidomide Society’s website through their oral history project. Please visit: https://soundcloud.com/wellcomelibrary/sets/thalidomide-an-oral-history