The Sickle Cell Disease Patient Journey - Episode 12

Patient Experience With Treatments for SCD 

June 11, 2021
Ifeyinwa (Ify) Osunkwo, MD, MPH, Atrium Health

,
Wally Smith, MD, Virginia Commonwealth University

,
Jamaal Bailey

,
Sherry Bailey

,
Cassandra Trimnell, Patient Advocate, Sickle Cell 101

A patient with SCD and his caregiver share their experiences with the treatment options he received since the diagnosis.

Ifeyinwa Osunkwo, MD, MPH: Sherry, when Jamaal was young, what treatment was he getting for his sickle cell disease? How long was he on this treatment?

Sherry Bailey: When he used to get sick, I would take him into the hospital, CHKD [Children’s Hospital of The King’s Daughters in Virginia]. They used to give him fluids and medicines through IV [intravenously]. He was on it most of his life, and he did pretty good with it. He said he was on hydroxyurea at 15 years old, but I couldn’t remember him being on that. But he said he was, so I believe they had put him on it. I like to say everything worked out for the best. I was scared, but I knew the doctors knew what they were doing. I put my trust in the doctors with his treatments and everything. They told me they were going to take good care of him, and they did. I’m thankful for that. I’m so happy. He went through a lot during school. He missed school a lot, but once they gave him medication and started his treatment, he came around. He got back on track, and I thank them for that.

Ifeyinwa Osunkwo, MD, MPH: Very good. Jamaal, what treatment are you on right now for your sickle cell?

Jamaal Bailey: I am on hydroxyurea and voxelotor.

Ifeyinwa Osunkwo, MD, MPH: Have you had any adverse side effects from either the hydroxyurea or the voxelotor? How do you manage that?

Jamaal Bailey: I’ve never had any adverse effect with the voxelotor. As for the hydroxyurea, usually the only adverse effect that I have is that it usually drops my white blood cell count and my hemoglobin. So every once in a while, they have to stop it for a few weeks or so and then start it again. That’s the only adverse effect I’ve had.

Ifeyinwa Osunkwo, MD, MPH: When that happens, you talk to a doctor and you guys work out a plan on when to stop and when to start it again?

Jamaal Bailey: Yes.

Ifeyinwa Osunkwo, MD, MPH: How do you feel these medicines have worked for you? Can you think about when you weren’t taking any medicine for sickle cell—just the pain medicine when you were sick—vs now that you’re on something to modify your sickle cell? Do you think it’s been very helpful? Are you about the same or are you better?

Jamaal Bailey: It’s definitely helped a lot. Before I started taking hydroxyurea, I was having a lot of pain crises and they were happening for a while. After I started taking hydroxyurea, it definitely decreased the pain crises and also decreased the amount of time that I was having them. Then I started taking voxelotor last summer—around June or July—and I immediately noticed that I started to have more energy because my hemoglobin had gone up. I was able to do more, and I didn’t feel tired or worn down. They both help, and they keep me out of the hospital. I still have crises sometimes, but those 2 drugs along with the exchange transfusions have been doing a lot for me.

Ifeyinwa Osunkwo, MD, MPH: Very good. Let me ask you something I ask all my young people. Why is it that sometimes young people, when they start to feel better, stop doing the things that help them start to feel better in the first place? Can you tell me why that happens?

Jamaal Bailey: I don’t know. I think it has a lot to do with feeling better. They stop taking the medicine because they think now that it’s better, they’re better. They don’t have to take the medicine. I’ve talked to my brother. He doesn’t like to take his hydroxyurea because he doesn’t like the adverse effects. Some people will stop taking their medications because of adverse effects and things like that.

Ifeyinwa Osunkwo, MD, MPH: One of the questions I asked them is that, if you’re having an adverse effect, did you talk to your doctor about that adverse effect? Because a lot of times, they’re easily fixable, or they may not be as bad as you think. One thing you can notice when you take hydroxyurea is that your fingernails may turn a dark color, right?

Jamaal Bailey: Yes.

Ifeyinwa Osunkwo, MD, MPH: Sometimes people freak out about that. But it’s not a big deal. You may be afraid of it, but if you don’t talk to your doctor, you may not know it’s not that big of a deal. You may think, “Oh my God, something really bad has happened to me.” I’d encourage you to tell your brother, if he’s watching or when you see him, to talk to his doctor about the adverse effects he’s having, because there may be a different treatment he may tolerate better or they may be able to treat the adverse effect.

Let me ask you this, Jamaal. If I were to give you a grade—A is you’re taking medicine every day and you never miss, F is you never take a medication, and then B, C, D, E—where do you think you’re going to fall in that spectrum?

Jamaal Bailey: I’d say A, because I take my medicine every day. There are some days—especially as I get sick—I may miss a dose, but I definitely try every day to take my medicine and take all of it to try to prevent sickle cell complications. I also want to make sure I don’t have any rejection for my kidney transplant.

Ifeyinwa Osunkwo, MD, MPH: Excellent. So you also have the kidney transplant medication to take. That’s added to the list of medications. If you were to talk to another young person, somebody in their 20s or early 30s with sickle cell disease, what’s the No. 1 advice you’d give them about the medication?

Jamaal Bailey: I’d tell them to take the medicine that’s prescribed for them. If I could just share a story: With my kidney, when I developed nephrotic syndrome, I actually stopped taking my medicine. It was because of sickle cell that my kidneys were messed up. But I also stopped taking the blood pressure medicine, which damaged my kidney a lot more. I tell people to take the medicine as you’re supposed to take it because that can help you in the long run.

Ifeyinwa Osunkwo, MD, MPH: So not taking a medicine in the short term may cause a long-term problem, and you learned from your own mistake, right?

Jamaal Bailey: Yes.

Ifeyinwa Osunkwo, MD, MPH: You’re encouraging folks to listen, to take their medications. Don’t listen to the doctor so much. Just listen to Jamal, because Jamaal has been there and done that. He has a T-shirt to show you that it works if you take your medication. If you don’t take a medication, it doesn’t work. Thank you so much, Jamaal.

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Transcript Edited for Clarity

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