Sickle Cell Therapies the Folia Community’s Taking other than Oxbryta
Since Pfizer's withdrawn Oxbryta, there's a lot of confusion, questions, and uncertainty of what's to come. First and foremost, we recommend speaking to your doctor to figure out what your options are. We also wanted to share what Folia users in the sickle cell community have reported taking in case it's helpful as you have these discussions with your doctors.
Adakveo
How it works: Adakveo reduces the chance of blood vessel blockages by preventing sickled cells from sticking to blood vessel walls. It does so by targeting and blocking the P-selectin protein (which is kind of like a glue along the blood vessel walls) that helps sickled cells stick to the walls.
Given by infusion
Approved for ages 16+
Endari
How it works: Endari targets the oxidative stress that causes red blood cells to weaken and sickle. It does so by using L-glutamine, a natural amino acid, to protect the red blood cells from damage caused by the oxidative stress.
Given orally
Approved for ages 5+
Hydroxyurea
How it works: Hydroxyurea increases fetal hemoglobin, which helps red blood cells stay rounder, more flexible, and less likely to become sickle-shaped.
Given orally
Approved for ages 2+
What other information are you looking for? Let us know, and we'll do whatever we can to help.
If you're taking one of these therapies and have personal experiences you're open to sharing, please comment below so others can get as much information as possible as they navigate switching their treatment.
