Voxelotor Use in the COVID-19 Pandemic

Ifeyinwa Osunkwo, MD, MPH: Abdullah, I want to circle back and talk about hemolysis. You mentioned your patient who was given voxelotor and she had a dramatic improvement in quality of life. Did you notice any change in her unconjugated bilirubin levels, her jaundice, did she talk about her eyes? 

Abdullah Kutlar, MD: It came down very nicely; the unconjugated bilirubin was just about 50%. And her reticulocytes were also lower. Of course, she had a hemoglobin of 10 [g/dL], which was about a 4-g/dL increase. She’s like, “I also feel great, my aches and pains are gone.” 

Ifeyinwa Osunkwo, MD, MPH: How has this changed your practice during the past year? The drug was approved in 2019. And then in March of 2020, the whole country shut down because we had a pandemic going on. One of the selling points for this drug is that you don’t need to monitor the hematologic profile, like you do with hydroxyurea. You can get the medicine and not have them get a CBC [complete blood count] very frequently because it doesn’t cause a drop in your white blood cell count or hemoglobin, unlike what you would expect to see in hydroxyurea. How does this change your practice? What impact does this medicine have in your clinical practice during the pandemic, Wally?

Wally Smith, MD: At this point, the patients are clamoring. You know that nasty thing called the internet? It can work for you or against you. Right now, it’s working for us. I will have patients come to the clinic visit, and they’ll say something like this, and Abdullah, you can back me up. “Why didn’t you put me on that medicine that makes people better? Why didn’t you give me that already? Are you holding back on me? I heard there was a medicine out that made people better.” And they’re talking about their neighbor across the back fence, who told them that just like you said, “I’m doing my housework now, I’m going outside, I’m doing things. And this is wonderful, my hemoglobin is up. I’ve never felt this way before. This is a miracle.” Now, that doesn’t happen to every patient. But when it does, patients like any other human beings, they exaggerate. And they say things like, “Oh, you’ve got to get on this, it helped me.” We’ve got that working for us now. Of all the drugs that are out there, this is the only one where patients are coming in and asking for it by name. They don’t even know how to tell the name of it. They just say, “Put me on that drug, you know that one.”These are big pills, by the way. You’ve got to take 3 of them. People used to complain about hydroxyurea being a capsule, and you have to take these 2, 3, 4 capsules a day. I’m not hearing that. I am hearing that it makes their stomach hurt, like you said, but I’m not hearing, “I can’t take those pills.” No, I’m hearing, “Give me that stuff.” Right now, it’s the most popular drug in my clinic, I’ll be honest with you.

Transcript Edited for Clarity