Opinion: How much would you pay for the miracle of gene therapy?

Every day I wake up thinking about how to get gene therapy to the children who will benefit from this breakthrough treatment. Right after that I start thinking about how we will pay for it.

I am not a doctor or a researcher or an employee of a biotech company. I’m just a mom who, through a set of unfortunate circumstances, had a front-row seat to one of the biggest medical breakthroughs in a generation: FDA approval of the first gene therapy to treat an inherited disease. This milestone was rightfully the cause for celebration by the scientists and doctors and patients who have worked for decades to develop treatments for hundreds of disorders caused by a mutation in a single gene.

But the victory lap didn’t. Now it’s time to face the next challenge for gene therapy, which might be bigger than learning how to repair genes: figuring out what it should cost and convincing politicians and insurers to pay for it.