Addressing Hydroxyurea Nonadherence and Medical Mistrust

Before we start, let me just say it. Nobody in these places really listens to Black patients, and that medicine you keep pushing makes my son feel sick. So tell me why I should keep giving it to him.

Whoa. Uh, Monique, this is Dr. Rissman. I hear the frustration in your voice, and I'm, I just wanna say I'm really sorry.

Sorry for what, exactly? I'm not trying to be difficult, I just... I've heard sorry before. What I need to know is whether you're going to actually talk to me about this medicine, or whether we're going to dance around it like everybody else.

No, I would love to be direct with you and, and really hear about what's been going on and how we can be doing better.

Alright. Then start with this. Jordan's on hydroxyurea.

He says it makes him nauseous, he's tired all the time, and he's thirteen so he's got opinions now. Why should I keep giving him something that makes him feel worse when he's not even in a crisis?

Yeah. Monique, I hear you. I hear that you are trying to get a 13-year-old to try to do something they don't wanna do.

That's part of it, yeah. But I need more than you hearing me. I need to know what this drug actually does for him, and what it doesn't do.

Because nobody's ever sat down and told me straight.

So tell me a little bit about what you know about hydroxyurea.

What I know is what I've been told in pieces. That it's supposed to cut down on the pain crises. That his blood cells change shape or something because of it.

That's about it. Nobody's told me if it's safe to take for years, nobody's told me what it does long-term, and nobody's told me why he needs it when he's doing okay.

Um, these are really important points, and I thank you for sharing them with me. I guess, you know, one of the things I'm wondering is, when you say you're, you gather information in pieces, w- where are you gathering your information?

Wherever I can. The clinic when there's time, which isn't often. Other moms online.

Things I read when I get a minute between shifts. That's what happens when nobody sits you down and explains it properly... you piece it together yourself.

Yeah, it seems like you've been doing a lot of advocacy for a long time.

I've been doing what any mother would do. I don't need a medal for it, I need answers. So can you give me the straight story on this drug or not?

Yeah, I, I absolutely can. Um, so what I'll say directly to you is that he's probably been doing really well for so long because he's been taking the hydroxyurea. And it's one of those medications that's important to take when you're feeling good to try to prevent the crises.

Okay. So you're saying it's working, and that's why he seems fine. But how do I know that?

He could be fine because he's just... fine. What does the evidence actually show, and don't dress it up for me.

Yes, absolutely. So, um, the evidence shows that the more consistently you take this medication, the fewer crises you end up having. It doesn't take them away entirely, it just decreases the amount.

Okay. That's straighter than I usually get. What about the long haul?

He's thirteen. If he takes this for the next twenty, thirty years, what does that do to him? Is it safe that long?

Yeah. You know, from my understanding, it is safe to take, um, and it wouldn't be a recommendation if it weren't safe to take.

Mm. That's the kind of answer that makes me nervous, honestly. "It wouldn't be recommended if it weren't safe" isn't the same as somebody actually studying it for thirty years. So what do we actually know, and what don't we know?

So your, your question about safety, uh, long term, I can't answer directly for you because generally, for a long time, kids who had sickle cell disease didn't live a long time, and so we don't have that data. And so I'm hopeful that when you ask me this question in 10 years or in 20 years, I'll have better answers for you.

Okay. That... that's honest. I appreciate that.

Nobody's told me that before, that we just don't know yet because kids didn't used to make it that long. That's a hard thing to hear, but it's the truth, and I'd rather have that than a pretty answer.

Yeah. I, I... My hope really is to be as truthful as possible with you and, and really get a better understanding about what life looks like for you so we can support Jordan as best as possible.

Alright. Then let me tell you what life actually looks like. I work two jobs.

I'm gone most days before he's up and I get home after dinner. His grandma helps when she can but she's got her own health. So when I hand him that bottle in the morning, I don't actually know what happens to it while I'm at work.

That sounds like you have a lot on your plate and, you know, I'm hearing from you that it's important that he takes his medications and you're also struggling to get him to take it, and you also have a lot going on. Um, is it okay if we sit for a second and try to think through, um, some things that might make it easier for both you and Jordan to take it?

Yeah. Yeah, okay. Let's do that.

Because honestly... I'll tell you something. I think sometimes he doesn't take it. He says he does, but I've found pills, I've seen the bottle heavier than it should be.

He's thirteen and he hates feeling nauseous and I'm not there to make him. So whatever we come up with has got to work for him, not just for me.

Yeah. That makes sense too. So, um, you tell me, when do you want to bring Jordan into the conversation?

Nobody's ever asked me that before. Nobody's ever asked what he wants either, honestly. I think... I think he needs to be at the next visit.

If this is his body and his medicine, he should hear it from you the way I just did. Straight. Can we do that?

Absolutely. So how would it feel if you and I make a plan that feels potentially feasible, and then we, um, propose it to Jordan and see how he feels about it?

That works. I don't want to walk in there and dictate to him, that'll shut him down faster than anything. So let's sketch something out and then let him push back on it.

What are you thinking for the nausea? Because that's his number one complaint, and if we don't solve that, none of the rest matters.

Yeah, I hear that. Nausea sucks. Let's make it so that he doesn't feel as nauseous and, uh, and has a good day.

Um, can you tell me, so it sounds like he takes the medicine in the morning. Is that right?

Yeah, mornings. Before school, with whatever he grabs for breakfast, which honestly some days is nothing. He's rushing, I'm rushing... it's not a calm sit-down situation.

Okay. So, the way that I would end up proposing it to Jordan is twofold. One, um, he can either consider taking it at nighttime so that when his peak effects of the hydroxyurea happen, they happen when he's sleeping, and so he shouldn't actually feel the nausea.

The alternative would be to try to take it every morning and take it with food so that... and see if the food addition changes how much he feels nauseous.

Okay. Nighttime actually makes a lot of sense. He's home in the evening, I'm home most nights by then, I can actually see him take it.

And if it hits him while he's sleeping, he's not dragging through school feeling awful. I like that better than trying to force food into him at six in the morning. Let's put that one to him first.

Okay. I like that idea. Um, okay, so nighttime feels feasible.

Um, and then is there anything else you want me to specifically address with Jordan when I meet him?

Yeah. Ask him what he wants. Don't just tell him the plan, ask him.

He's been talked at his whole life about this disease. And... tell him what you told me. The honest version, including what you don't know.

He can handle it, and he'll trust you more for it. That's what got me listening.

Yeah. I appreciate that. Thank you for saying that.

And I, I promise, I really, I really am curious what it feels like to be in Jordan's body. And so, I'll sit with him, I'll get to know him a little bit, and then we'll talk about, um, how we best can support him.

Thank you. That's... that's more than I came in here expecting, honestly. So let me say back what I think we're doing, make sure I've got it right.

Jordan and I come in together next visit. We try switching the hydroxyurea to nighttime so the nausea hits while he's sleeping. And you talk to him straight, the way you talked to me, and you ask him what he wants.

That's the plan?

That sounds like a good plan.

Alright. Then I'll get the appointment on the books and I'll bring him with me. And I'll tell him tonight that somebody actually wants to hear from him.

Thank you, Doctor. This was... this was different. I appreciate it.