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TIF on Thalidomide

TIF has increasingly been receiving questions from patients about the use of Thalidomide in the treatment of thalassaemia, based on the information that some clinics have been treating patients with this drug.

TIF wants to clarify and insist that there are no controlled clinical studies to support the use of Thalidomide as a standard of care for the treatment of thalassaemia. The potential that Thalidomide may have as a treatment option for thalassaemia is, currently, only based on case studies. This means that Thalidomide has only been tested in a limited number and specific groups of patients across the world, mainly in India and China, and so results on its efficacy and potential side-effects are limited and not representative.

Facts about Thalidomide:

In the 1950s and the early 1960s, thalidomide was used to treat morning sickness during pregnancy but it was found to cause severe birth defects (malformation/ teratogenesis) and early death in infants and was so removed from the market. Based on these facts, patients taking thalidomide for any reason must take appropriate actions toprevent pregnancy while taking thalidomide.

Now, decades later, thalidomide is being used to treat certain skin conditions and cancer. It’s being investigated as a treatment for many other disorders. Specifically, thalidomide (Thalidomid) is approved by the Food and Drug Administration (FDA) and the European Medicines Agency (EMA) for treating:

  • Skin lesions caused by leprosy (erythema nodosum leprosum)
  • Multiple myeloma (a cancer of the bone marrow)

TIF’s answer

To maintain our responsibility towards our global thalassaemia patients and ensure their safety, TIF only bases its recommendations to patients regarding medication and other forms of treatment on strong scientific evidence which derives from formal clinical trials and rigorous controls that test the safety and potential side effects of a drug and/procedures.

The Federation cannot take a formal stance on the matter of Thalidomide nor make any recommendation to patients as to whether thalassaemia patients should take thalidomide or not, until controlled clinical trials have been conducted to prove its efficacy as a treatment option for thalassaemia and determine potential side-effects, based on large international population samples and rigorous scientific controls.

Until then, TIF’s recommendations for patients and Healthcare Professionals is to act in line with scientifically proven standards of clinical care, as made available in the TIF Guidelines for the Management of Transfusion Dependent Thalassaemia and Guidelines for the Management of Non-Transfusion Dependent Thalassaemias