February 4th will be the 26th anniversary when my wife, Maggie, and I first met six of the seven people whose lives were transformed because they received the organs or corneas of my seven-year old son, Nicholas Green. Nicholas, an American boy, was shot in a bungled robbery on the Salerno to Reggio Calabria autostrada four months earlier while we were on a family vacation. The seventh recipient was doing well but was still recovering in hospital.
Meeting them in Messina, in an event arranged by the Bonino-Pulejo Foundation, was one of the most fulfilling events of my life. (Video: https://www.youtube.com/watch?v=IzCKZBfPcGE).
Until then they were just names. Seeing them brought it home to me in the most vivid way how much devastation our simple decision had saved.
Twenty-six years later five of the recipients are still living productive lives, although one is back on dialysis and another had to have a second corneal transplant.
That meeting, however, would be impossible in Italy now. In 1999 a law was passed forbidding healthcare personnel to divulge any information about either organ donors or recipients. It had the best of motives – to ensure privacy — but has had the insensitive, some would say cruel, result that the two families can never have more than the most basic information about each other. They cannot even exchange anonymous letters.
But now a bill has been introduced in Parliament to allow the two sides to write to each other, if both want to, or even meet, under conditions set by their doctors. Dr. Pierpaolo Sileri, Deputy Minister of Health comments, “The liberalization of contacts between recipients and donor families is a deed of humanity and civilization, a right and proper act”.
This is an astounding change. When I started a campaign in 2016 to liberalize contacts, I could not get a single doctor or health care official to join me — only a friend from Rome, Andrea Scarabelli. We were so alone we became known as Don Quixote and Sancho Panza.
But when we opened our campaign enough open-minded people in the media were able to visualize how comforting it is for donor families to learn what a difference their donation has made. Some of the largest newspapers published major articles, some of the largest television shows ran interviews, radio interviews reached drivers stuck in traffic. From being a subject that was as dead as the dodo, people all over Italy began to ask the health authorities: “If two families with as close a bond as this want to contact each other, why should some bureaucrat have the power so say no?” Marco Galbiati, of Lecco, whose 15-year old son, Ricky, died in 2017, collected 50,000 signatures to repeal the law.
But we did not have to rely on emotion. In the United States, where contacts are not only allowed but have been strongly recommended for nearly thirty years, tens of thousands of families have written to each other and some of them have met. Clinically-documented reports show the great majority of these contacts have been therapeutic for both sides.
After studying the evidence, each of the main health authorities — the National Bioethics Committee, the National Institute of Health and the National Transplant Center — spoke in favor of allowing contacts. The bill in Parliament embodies their recommendations.