I Wish to Be Recognized as a Thalidomide Survivor

The following information could be useful

In Spring 2015, following the success of the Right the Wrong campaign initiated by TVAC’s task force, the Government of Canada established the Thalidomide Survivors Contribution Program. In Canada, one can only be officially recognized by the government as a thalidomide victim through this program.

TVAC frequently receives inquiries from individuals who believe they are thalidomide victims. We understand one’s desire and need to know the cause of their malformations and we empathize with every person that has to deal with disabilities in their everyday life.

However, please note that TVAC is not involved in any way in the administration of the Contribution Program. Aside from the information given on this page, our organization cannot assist individuals seeking recognition as thalidomide victims, neither medically nor legally.

To this day, the eligibility requirements for the Contribution Program, as set by the Government of Canada, are the following:

  • To be a Canadian thalidomide survivor who was compensated as per the 1991 Extraordinary Assistance Plan (EAP)

OR

  • To meet 1 of the 3 eligibility requirements set out in the 1991 EAP, which are:
    • verifiable information of the receipt of a settlement from the drug company
    • documentary proof (for example, medical or pharmacy records) of the maternal use of thalidomide (brand names Kevadon or Talimol) in Canada during the first trimester of pregnancy
    • listing on an existing government registry of thalidomide victims

Here are some information that could help you in the process

  • In Canada, thalidomide was available under the brand names Kevadon and Talimol.
  • The American manufacturer Richardson-Merrell started to distribute samples of thalidomide in Canada at the end of June,1959, under the name Kevadon.*
  • Doctors in Canada started prescribing thalidomide on April 1st, 1961.*
  • The Canadian Food and Drug Directorate (now Health Canada) advised that the drug was removed from the market on March 2, 1962.*
  • The most important element in proving that thalidomide is the cause of your malformations is documentation. A original prescription or a doctor’s note in your mother’s medical record indicating that she was prescribed thalidomide are the main accepted proofs.
  • Your mother’s doctor when she was pregnant may have documents that indicate the drugs she was prescribed or the samples that were given to her.
  • The hospital under which her obstetrician operated might have a copy if your mother’s medical record in its archives.
  • Ask your doctor’s help to request old medical records, he or she may be able to make enquiries for you. If not, the Canadian Medical Association or your provincial College of Physicians might be able to put you in touch with physicians who have retired or who took over someone else’s practice.
  • It is also possible that the pharmacy that performed the prescription has kept records.

You must also consider in your research that thalidomide is not the only cause of birth defects. Other drugs, substances (including alcohol), medical conditions and genetics problems may cause similar malformation. For example:

  • Robert-SC phocomelia;
  • TAR Syndrome;
  • LADD Syndrome;
  • Fanconi’s Panmyelopathy;
  • Amniotic band lesion;
  • Möbius Syndrome;
  • Etc.

Why is it so important to be accurate?

Every person has a right to know what caused their disability to the best extent scientifically possible. The very first thing that jumps out is that if their disabilities are genetic and/or generational, these persons with disabilities have the right to this knowledge for family planning. As a matter of fact, thalidomide cannot cause second generation birth defects, while other causes of birth defects might do.

Also, if there is a larger than average population of persons born with disabilities not as a result of thalidomide, perhaps some other agent is responsible. In order to identify such an agent in a timely manner, we must not attach ourselves to false diagnosis.

Moreover, problems and issues experienced by those wrongly diagnosed as thalidomide victims may not pertain to actual thalidomide victims. Hence, those misdiagnosed but accepted as thalidomiders persons, could corrupt ongoing studies of true thalidomiders.

With thalidomide licensed again, we must be sure that when an accident occurs, that it truly is a case of thalidomide causing the disability. If we ‘cry wolf’, no one will ever listen when the real ‘wolf’ shows up.

That being said, we would like to express our sincere empathy regarding everyone living with birth defects, regardless of the cause.

* The information followed by an asterisk is drawn from :  The War Amputations of Canada – Thalidomide Task Force (1989). Report of the Thalidomide Task Force (Synopsis).