Orvieto-Brussels, February 2001
I am writing to you, and to many other distinguished scientists, to invite you to take part in a common battle. My name is Luca Coscioni. I have a degree in Economics and an MA in environmental economics. I have taught Economic Policy at the University of Viterbo.
I am directly involved in the battle for the freedom of science and of therapy, with regard in particular to research into embryonic staminal cells. Such research is currently prohibited in Italy, just as hope is prohibited for the millions of people suffering from serious, widespread diseases for which there is currently no effective cure.
If you could meet me, you would not be able to hear my voice. Five years ago I was struck by amiotrophic lateral sclerosis, an incurable neuromuscular disease which makes those who suffer from it paralytic and unable to speak with their own voice. In order to communicate I use a computer with a voice synthesis programme, the system used by the famous English physicist Steven Hawking, who suffers from the same disease.
Amiotrophic lateral sclerosis, which strikes one in 10,000 people, is best avoided, to say the least. Unfortunately, however, we still do not know the causes that bring it about, which means that it is impossible to predict who will be affected and why. For 2001 all we know is that there will be several hundred new cases of amiotrophic lateral sclerosis in Italy, and a total of several thousand Italians, give or take one or two, will be battling against the disease.
There is, however, a possibility that amiotrophic lateral sclerosis could be cured with the use of staminal cells. Scientific research will tell us if and how. In Italy, this possibility unfortunately seems to be denied to the thousands of people who, like me, fight for survival every day. Why? Because of the interference of the Catholic Church, which is, as everyone knows, opposed to therapeutic cloning and to the use of surplus embryos for the purposes of research. Embryos, that is, which are in any case destined to be disposed of, and which could, if they were used, save the lives of millions of people. According to the Dulbecco Report on staminal cells, which contains the recommendations of the 25 experts appointed by the Minister of Health to examine the issue, 10 million Italians could be treated with therapies based on these cells. People suffering from a range of diseases, including Alzheimer’s disease, Parkinson’s disease, amiotrophic lateral sclerosis, spinal muscular atrophy, traumatic lesions to the spinal marrow, muscular dystrophy, tumours and leukaemia, diabetes, heart attacks and strokes. People who continue to suffer as they anxiously await a law on therapeutic cloning.
While the United States and Great Britain approved therapeutic cloning six months ago, in Italy we are still discussing whether it is ethical or not to use frozen embryos close to their deadline for use, if not already unusable. They can be destroyed, it seems, without causing any scandal, but they cannot be put to good use for research. And thus, while experimentation will begin next spring in the United States and Great Britain, in the form of pre-clinical studies, Italy will be enveloped by the fog of demonisation and disinformation. And in this thick fog it will not be difficult for the government and the majority to continue to ban therapeutic cloning, among other things, thus denying hundreds of thousands of Italians a concrete hope of finding a cure, or forcing them to travel to other countries in a shameful form of “health tourism”.
In the face of this disastrous scenario, it is absolutely necessary to be present in Parliament. The Lista Bonino has drawn up a people’s bill (of which I am honoured to be the first signatory) containing laws on the subject of medically assisted procreation and research on human embryos.
Fighting year after year, month after month, day after day, hour after hour against the disease that has struck me has not given my life a meaning. Diseases, and the suffering they bring, never have any meaning. I am giving meaning to my life by myself, by living it, as I am allowed to live it. By loving, hating, and being involved in politics, which is one of my passions.
This is why I have decided to stand in the general election, together with Emma Bonino, in the electoral list that bears her name, to give a concrete form to the fight to defend the freedom of scientific research, the freedom to choose one’s treatment, the freedom to choose how and when to die, in the case of incurable diseases marked by unbearable suffering and pain.
In the civilised, advanced world, debate is born and develops around ideas. In Italy, on the other hand, debate is impossible, and prohibition is the order of the day.
I am appealing to you, Nobel Prize winners and scientists, to ask for your support for a cause which is mine, but which is also and above all yours. I am a concrete example of how the right to life and the freedom of science are one and the same thing. If Italy continues to be the victim of anti-scientific obscurantism, millions of people like me will continue to be condemned by the irresponsibility of politicians, as well as by the gravity of their diseases.
For this reason I would ask you to send me a message of support for this battle and for this appeal against the attack on the freedom of scientific research and practice, in particular against the prohibition of experimentation with embryos and of therapeutic cloning.
I would like to take this opportunity to thank you, all of you, and also to express my thanks to Science, which is Knowledge. To Science, which is also Information Technology, thanks to which the wide sea of knowledge and ignorance, of despair and hope, of love and hate, which dwells inside me, which is me, and which would otherwise have been compelled to silence, enclosed in the narrow space of a bottle, can flow, however slowly, towards you all.Tags: appeal, freedom of scientific research, support