Fifty years after it was presented to the world for the first time and caused devastating results, thalidomide returns and is crowned a second time as a miracle drug; In Brazil it is used to cure and treat leprosy and it is possible that in the UK it will soon be used to treat cancer
By Matt Fraser Guardian
Thalidomide, one of the most notorious drugs in the history of the twentieth century, celebrates its fiftieth anniversary this year. The drug, developed by a former Nazi scientist, burst onto the market as a wonder drug - "the drug you can't take too much of" - and was given as a treatment for everything from coughs to the flu, headaches, insomnia, and to the horror - against morning sickness in pregnancy. It was taken off the shelves in the UK in 1961, but by then ten thousand thalidomide babies had been born in the world. In Britain alone, 455 thalidomide babies were born, who today are lawyers, social workers, artists, bankers in their forties - and I am one of them. Three months before I was born, the manufacturers of the drug announced that it was "completely safe to use". I was born without thumbs and my arms are very short.
This year I went to Brazil to film a documentary about the drug for the British Channel 4. Brazil put the drug into use in 1967, and the result: today there is a whole new generation of thalidomide babies, born years after the full and devastating effects of the drug were already known to the medical community. In Brazil, the drug is used to treat leprosy, although other countries where the disease exists, such as India, have never considered using the devastating drug. Furthermore, although there are many warning mechanisms whose role is to prevent pregnant women from using the drug in Brazil, it is likely that in the coming years more thalidomide babies will be born in Brazil. Many have already been born.
My trip to Brazil was exciting, enlightening and sometimes frustrating. I went to get explanations about the use of the drug, which, amazingly, may soon re-emerge across the UK as one of the cancer treatments. The journey made me look at this drug in a different way, which is somewhat responsible for shaping my personality.
When it was first introduced to the world in 1954, it seemed to be designed to solve a very wide range of problems. My mother, an actress who was in the middle of a concert tour when she carried me in her womb, used a drug - a prescription drug - for insomnia. She remembers the silence that prevailed in the delivery room when I came out into the world and was immediately taken out. She thought I was stillborn and waited for the doctor to come and tell her the bitter news. According to her, she felt a great relief when she was told that "all in all" I was born with short arms. I understand that I was lucky - I had a loving mother and I grew up in a society that took care of the welfare of thalidomide babies.
The first thing I encountered in Brazil was the tolerance of its people regarding my disability. They were shocked by the fact that I was a vegetarian much more than by my short arms. I have always resented the fact that the drug companies that produced thalidomide got out of the mess the drug caused with a legal settlement out of court. None of their men were sentenced to prison terms and were not actually forced to admit responsibility for the terrible and wide-ranging crime they committed. These people have never apologized, and the thought that history might repeat itself - in Brazil or the UK - sends chills through me.
Many people in Brazil suffer from some kind of disability, so thalidomide babies - "thalidomiders" - are not as unusual as they are in the UK. This fact gives them a certain freedom, as I discovered when I met Hercules, 19, and Bea, 22, two young Brazilian thalidomiders. Both are free of the embarrassment that accompanies disability, both are full of self-confidence and both are sexually active. I accompanied them to a night club and remembered with pain how my life looked when I was their age - complicated, in denial about my situation, nervous and as if trapped inside my skin. Women, of course, did not treat me at all - I was disabled and I was ashamed of it. I became a drummer in a band and spent my twenties in total denial of my condition. It was only at the age of 30, when I became awake and involved in the political arena, that I began to think about the existence of a complete and sexual relationship with another disabled person.
Brazilians like Hercules and Bea, who are supported by a loving family, also receive compensation money from the state. Anyone who is able to prove that the disability he suffers from was caused by his mother's use of the drug, is entitled to government support in the amount of $400 a month - a huge sum in Brazil, many of whose residents survive on $10 a month. And yet, many thalidomide addicts in Brazil live in abject poverty.
Milena is taking thalidomide
Leprosy is a disease that affects people living in poverty, in dubious sanitary conditions and suffering from a poor immune system. The symptoms of the disease, which include particularly strong headaches and abscesses that appear on the surface of the skin, are truly terrifying. Milena, a young woman I met, uses thalidomide to control the symptoms of the disease. Her partner told me that before she started receiving the medicine, Milena would wake up every night with cries of pain that no other medicine could alleviate.
One of the surprising discoveries I made was the speed with which the medicine works. From the moment the symptoms appear and taking the medicine until the symptoms disappear no more than two hours pass. Milena showed me a pack of thalidomide. It was the first time I saw the medicine or the packaging. Holding the drug in my hand was a very important moment for me, but I also experienced at that moment another dim emotion: there are certain circumstances, a certain level of almost desperate need, in which the person using it cannot be accused of irresponsibility. On all the boxes there is a picture of a woman with a big X on it and a very detailed list of the effects that the drug may cause to the fetus.
While holding the thalidomide pack in my hand, I realized that the drug was becoming something else for me: no longer just the thing that made me disabled, but something that helps people like Milena live without unnecessary suffering. Maybe something good came out of all the bad the drug caused, but still, there was something extremely disturbing about the way I sat there, holding thalidomide in my hand.
Women who use the drug receive psychological counseling and sterilization injections every month, but when 38 new cases of leprosy are diagnosed each year in the country, some of them are expected, by necessity, to fall through the cracks of the bureaucracy. Today it is not possible to find conclusive evidence that babies affected by thalidomide are still born, but the probability of this is high. In a society where there are such high illiteracy rates, in such a large and poverty-stricken country, among all these there will surely be some pregnant women who will use the medicine. Some of the families will surely understand the connection, come up with proofs and demand the disability allowance they deserve. But how many of those families will never find the connection? And how many of them, even if found, will be able to provide evidence of the use of the drug?
In the UK, about two hundred applications have been submitted to date to use thalidomide for medical research purposes. Some of those studies are already underway, testing whether the drug has the power to contribute to the treatment of certain diseases, such as arthritis and cancer. I find it hard to believe that there will ever be proof that thalidomide is indeed a "wonder drug", but there is evidence that it helps various types of cancer. During the production of the film, I met James Herbert, a patient with lymphoma - cancer of the lymph nodes - who told me that after he was told that he had only three months left to live, he was offered to try thalidomide treatment, as part of one of the clinical trials being conducted with the drug. The tumor he was suffering from, which developed very quickly, began to shrink and he did not need strong painkillers so often. And yet - I am unable to digest that the drug that caused me such a severe disability may become the future miracle drug that will be able to save cancer patients and patients with other serious diseases.
My generation knows, maybe too well, because the race after the quick profit can have disastrous results. If thalidomide becomes a drug that cures cancer, it is better for the state to prepare in advance a compensation plan that it will impose on the companies that will produce the drug, so that when the foreknown case happens and a thalidomide baby is released to the world in Britain, he and his family will receive adequate compensation. It is impossible that they will allow those companies to avoid their responsibility again.
The production of the film did not make me change my worldview about being disabled by thalidomide. The disability does not affect my day-to-day life and I am satisfied with my life as an actor, writer and TV presenter. For balance, I am also pleased with the fact that fifty years after its invention, the drug that has caused so much suffering to so many people may soon turn into a positive thing.
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