(STAT News) – Trading her chances of having children naturally for a chance at freedom from a debilitating genetic disease was a difficult choice. But at least Tornyenu was presented with the option of preserving the possibility of having biological children. As part of the trial of the CRISPR treatment, called Casgevy, the companies developing the drug paid for participants to get counseling with reproductive specialists and procedures like egg and tissue freezing and sperm banking. At one study site, every single participant took advantage of these services, researchers said.

It’s an option that most Americans who could benefit from this transformative therapy — expected to be approved by the Food and Drug Administration any day now — are unlikely to have once it hits the market. That, patients and specialists told STAT, will be a huge obstacle for people eager to try Casgevy or a second sickle cell cure awaiting the FDA’s nod this month. (Read More)