Could gene therapy improve my life as an adult with sickle cell?

Several weeks ago, when news of the first sickle cell disease patient to be cured by gene therapy went viral online, I completely ignored it because I wasn’t interested. As a sickle cell advocate and educator, I was tagged repeatedly on these articles. Despite my initial reluctance to post about it, the numerous tags eventually prompted me to comment.

The gene therapy cure doesn’t excite me because it is neither affordable nor accessible to most people living with sickle cell disease. Even if affordability and accessibility weren’t issues, I’m skeptical about its potential benefits for me as an adult with sickle cell.

This sparked a question in my mind, so I asked fellow sickle cell warriors and caregivers in various online support groups: If gene therapy were affordable, would you choose to pursue it?

I received different, fascinating responses. After going through all the replies, I discovered that most caregivers of young sickle cell warriors want a cure for their children. On the contrary, many adult African warriors would prefer to spend the money on improving their lives...