ITALY: LUCA COSCIONI

 

LUCA COSCIONI

“If you were here in front of me, you couldn't hear my voice. Nine years ago I was struck by amyotrophic lateral sclerosis. It is a neuromuscular disease that is now incurable, which makes those affected paralyzed and unable to speak with their own voice. Today, thanks to science, I can communicate again. I spend an average of 30 seconds to write a word, which will then be read by the speech synthesizer of the computer thanks to which I can speak, express myself. In a word, live. Words have become a scarce resource for me. I have to distill them one by one, as a precious thing.  Still, there are a thousand that I would like to scream. To give thousands of people like me hope. So that the search that could save us doesn't stop. There was a time for the miracles of faith. There is a time for the miracles of science. One day my doctor will, I hope, tell me: "Try to get up, because maybe you walk". The thing is, I don't have a lot of time, we don't have a lot of time. And, between a tear and a smile, our hard lives do not need the anathemas of religious fundamentalists, but the silence of freedom. Our lives need freedom for scientific research. But they can't wait. They cannot wait for an apology from one of the next popes ”.

Luca Coscioni, born on July 16, 1967 in Orvieto, taught environmental economics at the University of Viterbo and was training to participate in the New York marathon when he was struck by amyotrophic lateral sclerosis. Luca writes in his diary: “I got sick and it is as if I were dead. The Desert entered me, my heart turned to sand and I thought my journey was over ”.

The first experiments with embryonic stem cells conducted on mice by Professor Jeffrey Rothstein at the John Hopkins Institute in Baltimore open a new frontier of scientific research that could lead to the treatment of amyotrophic lateral sclerosis as well. In 2000, the European Parliament passed a motion against therapeutic cloning, after Great Britain had decided to authorize it along with research on supernumerary embryos.

Luca Coscioni decides to run for elections online for the renewal of the National Committee of Italian Radicals, the deliberative body of the political movement known for its battles for secularism and civil rights, promoting a campaign against prohibition on scientific research. He is elected, and the radicals make the battle for freedom in stem cell research the central theme of their campaign for the 2001 general election.

Luca Coscioni is the leading candidate and is supported by an appeal signed by 50 Nobel laureates from around the world. José Saramago, one of the nobels, writes: "perhaps the support of a simple writer like me will clash a little, or even too much, in the list of scientific personalities who, with their names and their prestige, seal the statements made by Luca Coscioni . In any case, you can have my name. Provided that the light of reason and human respect can illuminate the gloomy spirits of those who still believe, and forever, to be masters of our destiny. We had been waiting for a long time for day to come, we were exhausted by waiting, but suddenly the courage of a man rendered mute by a terrible disease has given us new strength ".

Luca participates in national television debates by intervening with his voice synthesizer, is received by the President of the Republic Azelio Ciampi and by the Minister of Health Umberto Veronesi, participates in protest sit-ins and goes so far as to self-reduce his own drugs in a nonviolent action to denounce the lack of sufficient information on the part of public television on the question of the freedom of scientific research.

He is not elected, but a few months later he is again supported by hundreds of scientists, doctors, patients and political and cultural personalities as a candidate for the National Bioethics Committee.

On 20 September 2002, the day in which the liberation of Rome from the temporal power of the Vatican is commemorated in Italy, the Luca Coscioni Association for the freedom of scientific research was founded with "the aim of promoting the freedom of treatment and scientific research , self-managed personal assistance and affirming the human, civil and political rights of sick and disabled people ”.

The Luca Coscioni Association, after being engaged in the referendum campaign aimed at canceling the law on medically assisted procreation, approved in February 2004 by the Italian Parliament, which prohibits any form of research on embryonic stem cells, has continued the political initiative to overcome its bans through bills and legal initiatives that have led over time to judicial rulings that have mitigated the prohibitionist scope.

At the international level, the Association has waged a campaign against the proposal, supported by some countries at the UN, of an international convention for the total ban on therapeutic cloning, attracting the support of dozens of Nobel Laureates. Following these transnational initiatives, the Luca Coscioni Association promoted the World Congress for the freedom of scientific research as a permanent forum for discussion between institutions, scientists and researchers from all over the world.

Unfortunately, day by day his physical condition worsened until he died in 2006. Since that moment Luca's battles have been carried out by his wife Marie Antoinette and by the people who have been close to him over the years.