One Saturday night while Rabbi Yosef Zvi Rimon was teaching a group of seminary students at his house in Alon Shvut, there was a knock at the door. Tentatively, he opened it and was greeted with dozens of faces looking at him expectantly. He apologized and said that he was busy teaching a class, but they pleaded that theirs was a case of pikuach nefesh – saving a Jewish life. In his role as the rabbinic representative on the pharmaceutical committee, that is a phrase he has heard very often. And something about this group struck him.

On his doorstep was a group of parents whose children have Duchenne muscular dystrophy (DMD). These parents brought their children to lobby Rabbi Rimon to approve an experimental medicine. The disease – the most common hereditary neuromuscular condition – usually manifests around the age of five with ALS-like symptoms. Children with DMD gradually lose the use of their hands, their ability to walk and even to drink. The most optimistic prognosis is that people with this disease may live to age 30.

Scientists have developed a new medicine that might delay the disease’s onset for up to three years. Meaning that a child will perhaps begin showing symptoms at age eight instead of five. The medicine is helpful but is not a cure. In Israel, a single injection for a five-year-old patient costs NIS 15 million. If there are 15 children who would be eligible for that treatment each year, that translates to a cost of NIS 225 million. 

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