The Israeli reservist fighting for his son’s life

Gadi Roz's 6-year-old son Meitar is battling a degenerative condition known as Duchenne Muscular Dystrophy, for which there is no cure

For Gadi Roz, a major in the IDF, the front line and the home front have collided, with life-and-death consequences. Since Oct. 7, Roz, a reservist, has spent months fighting in Gaza, while back home, his 6-year-old son Meitar is battling a degenerative condition known as Duchenne Muscular Dystrophy, for which there is no cure. When he is not with his unit, Roz has been pressing the Israeli government — so far, to no avail — to approve a promising gene-therapy treatment for DMD, one approved last year by the U.S. Food and Drug Administration.

Roz, 35, describes “fighting two wars” — one for the future of Israel and one for the life of his son.

Meitar, the younger of Roz’s two children with his wife, Eliya, was diagnosed with the life-limiting condition when he was 3. 

“Our world collapsed,” Roz, who had never previously heard of the illness, told Jewish Insider

Since his son’s diagnosis, the decorated soldier, who in his civilian life works in high-tech while also studying for a degree in electronic and electrical engineering, has been campaigning to convince Israel’s Ministry of Health and the health-care providers to authorize a pioneering gene-therapy treatment approved by the U.S. Food and Drug Administration last year. 

“It was very hard on us, but I realized I had one of two decisions to make,” said Roz. 

The first, he said, was to “say, OK, my son is going to die, let’s make the best of those years, quit my job, stop learning and just gather positive experiences.”

But this, he said, “is not me.” 

“I’m not the one that gives up, I’m the one that pursues my dreams, says there is always a hope and there is always a solution and you just need to find it.” 

In the wake of the diagnosis,  Roz has “turned over every stone” to try to find a treatment that would slow the progression of the disease in order to save his son’s life. 

Prior to being called up for military reserve service on Oct. 7, he campaigned fiercely to get the government to approve a groundbreaking treatment that has displayed promising results. 

Roz has spent most of the time since the Hamas attack fighting in Gaza, which has made him even more determined to win approval for the new drug. Over recent weeks, he has appeared in the Israeli media — often in uniform — calling on the government and Israel’s medical insurers to green-light a potentially life-saving new treatment for his son — and others like him.

“It’s the next best thing to a cure that these children have,” he told JI, adding that there are around 300 people with DMD in Israel and some 15 would be eligible for the treatment.

Typically diagnosed in early childhood, DMD is a progressive condition that causes muscle to gradually weaken and waste away. There is no cure and the deterioration is rapid, meaning most patients are wheelchair-reliant by early adolescence.

Affecting mainly boys, DMD is caused by a mutation on the dystrophin gene that protects the muscles. The devastating syndrome eventually affects all the muscles, including the heart and lungs, and, according to the Israeli government, “in most cases leads to death in the second or third decade of the patient’s life.” 

The drug, from biotech company Sarepta Therapeutics, is called Elevidys and is administered in a single dose intravenously. It aims to deliver a working copy of a faulty gene that leads to the disease.

Children who participated in initial trials in the U.S. showed sustained motor function over several years when compared with those who did not receive the therapy, researchers said.

More research is needed on Elevidys, according to the FDA, but initial results have been promising. The problem for Roz and other families, however, is the eye-watering price tag. At $3.2 million per dose, Elevidys is one of the most expensive drugs in the world.

Without approval for the medication from the Ministry of Health, Meitar and other children like him face a bleak future. 

Prof. Cyrille Cohen is head of the laboratory of immunotherapy at Bar-Ilan University. He outlined the system of approving new medical treatments in Israel. 

“In many developed countries, pharmaceutical treatments undergo a rigorous approval process, initiated by pharmaceutical companies and overseen by health ministries,” Cohen said. “This process comprises three clinical phases: Phase 1 assesses safety in a small group of healthy volunteers; Phase 2 evaluates initial effectiveness and safety in a larger patient group; and Phase 3 involves a diverse patient population across multiple centers to assess broad effectiveness, safety, and potential side effects.” 

“While FDA or EMA [European Medicines Agency] approval can expedite the process in Israel, the Ministry of Health independently evaluates each treatment, highlighting the country’s regulatory autonomy. Approval in one jurisdiction does not guarantee automatic approval in another, emphasizing the importance of thorough assessments by each regulatory body.”

The Roz family is currently hoping that the gene therapy can be added to the “sal trufot” – or medicine basket – which will ultimately decide whether or not it will be funded by the state. 

“After a treatment is approved for use in Israel, the question remains who will finance it,” Cohen said. The Sal trufot, which is updated every year by a committee of experts, includes all the medicine/treatments that will be financed by the state of Israel.

“The considerations are multiple and include for example what the efficacy of the treatment is and who and how many will benefit from it,” he said. “Unfortunately as resources are limited not every treatment can be approved.”

Roz continues to petition the committee responsible for approving new medications to approve Elevidys in Israel so that Meitar’s treatment would be covered at no cost.

“You can’t put a price on someone’s head, because if I die in the war nobody else will fight for my son,” said Roz, explaining that his wife is herself registered disabled after suffering head injuries during her time in the IDF.

He performs his military duties “with a full heart because I know that I’m fighting for a just cause,” he said. 

“It’s for my family and my people and my country,” he said. “If I die I will be complete with this decision because I understand the meaning of what I do in the military. I have a responsibility for my soldiers, and my soldiers have a responsibility for the civilians of Israel. But as far as I’m concerned, the state owes me this — and moreover, it owes it to my son.”

He describes Meitar as a “loveable child” who is “very funny and always smiling.” He loves to play with his dog and his 9-year-old sister Liri, who also struggles with the situation but who Roz describes as the “glue” in their family.

Meitar is “fully functional,” according to his father, “but he has a ticking clock above his head” as the treatment is thought to be most effective in younger patients.

He endures a grueling schedule of physiotherapy and other treatment each week to ensure he stays fit and mobile. 

“He’s like a professional athlete but the difference is that one does it for fortune and fame, and the other does it to save his life,” said Roz. 

But despite his engagement with the media — and his continued service in the military — Roz has received no response from the government. The Ministry did not respond to a request for comment from Jewish Insider.

“Every day I worry what will happen if something happens to me,” he said. “Because if I die even my life insurance won’t be enough to pay for it [the treatment].” 

Thinking about what will happen if the government does not approve the treatment is bearing down on Roz. 

“I could take the crowdfunding route and maybe I will have to eventually, but I’m scared to take this step because it’s a lot of money to recruit. Even if I sell my house, my parents’ house and my wife’s parents’ house, I still won’t get enough money.”

And Roz is also extremely mindful of others in his position. 

“My son is not alone,” he said, referring to the 300 children who have the illness and the 15 eligible for the new medication. 

Roz sees his military service, and his push to win approval for Elevidys, as part of the same fight. “My daughter asked me, ‘Daddy, why are you going to the army? You’re just one person, can’t the army give up on one person?’ 

“I said to her in our family that doesn’t happen. If I don’t do it for everyone, no one else will do it, which is why I go to miluim,” using the Hebrew word for reserve duty.

Similarly, it would be “selfish” to just worry about his son, he said. 

“It’s not us, it’s not our family. We believe in helping everyone, not just ourselves.”

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