Last week, a decision was made in Israel that most people probably did not notice. It did not make front-page headlines. It was not debated on television. Yet for a small and devastated community of families in Israel and around the world, it was the news we had been waiting years to hear.
IWILFIN, a maintenance therapy for high-risk neuroblastoma, has been approved for inclusion in Israel’s national health basket.
If you do not know what neuroblastoma is, you are fortunate. It is one of the most aggressive cancers affecting young children, most often diagnosed before the age of five. It is difficult to treat, prone to relapse, and responsible for roughly 15 percent of all pediatric cancer deaths. For families who endure the long and brutal road of frontline treatment, the period after remission can be just as terrifying.
IWILFIN is used as a maintenance therapy intended to help reduce the risk of relapse and protect the progress children have fought so hard to achieve. Because neuroblastoma relapse is still tragically common, giving children every possible chance to stay in remission is not optional; it is essential.
I know this because I am one of those families. Our son Shir did not get the chance to reach this stage of treatment, which is exactly why I fight so hard for the children who do.
Shir, whose name means “song” in Hebrew, was diagnosed with neuroblastoma before he turned two. He fought with everything he had. When he was two years and three months old, we lost him.
In the years since, I founded Shir for Life with a clear mission: To help ensure that children with neuroblastoma have access to the best possible treatments – and that no family has to confront this disease without the tools that exist to fight it.
What began as a personal response to loss has grown into an organization registered in both Israel and the United States, working with partners and families in over 50 countries, supporting global research collaboration and education initiatives, and helping launch the annual International Neuroblastoma Awareness Day.
Advocating for IWILFIN’s inclusion in Israel’s health basket became one of our central goals. The therapy has been approved by major regulators and represents an important additional option for children in remission.
For years, Israeli families watched as access to the medication expanded elsewhere while remaining largely out of reach here. That reality has now changed, and it matters enormously.
But this moment, as meaningful as it is, is not the end of the story.
Neuroblastoma remains one of the most underfunded pediatric cancers relative to its impact. Research still lags. Treatment options for relapsed patients remain dangerously limited. And Israel, despite this progress, still lacks a fast and transparent pathway for approving pediatric oncology drugs, thus families often wait years for access to therapies that already exist.
The decision to add IWILFIN to the health basket demonstrates that Israel takes the lives of its youngest cancer patients seriously. Now we need to go further.
We need sustained investment in neuroblastoma research, both locally and through international collaboration. We need a streamlined approval pathway for pediatric drugs. And we need to ensure that children whose disease relapses, who fall outside standard protocols, are not left without options.
Shir began his life with joy. He had friends, a smile that lit up every room, and a presence people felt immediately. He simply did not get the chance to grow up. That loss is something I carry every with me day – as do too many parents in Israel and around the world.
The approval of IWILFIN proves that progress is possible. It is a reminder that advocacy matters, that voices matter, and that change can happen when people refuse to accept delay as inevitable.
Now we must make sure this is only the beginning.
The writer is the founder of Shir for Life, a nonprofit in Israel and the United States fighting to change the fate of children with neuroblastoma worldwide.