Enhancing Hemophilia A Adherence: Expert Insights


Lisa Schrade, PharmD, and Robert Sidonio Jr, MD, MSc, explore hemophilia A adherence and how specialty pharmacists can empower patients to take control of their healthcare through proactive engagement, personalized routines, and switching strategies when necessary.

Jonathan Ogurchak, PharmD, CSP: Let's talk a little bit about adherence again, Dr Schrade, and especially where that specialty pharmacy can play a big part. We talked about frequency of engagement, how it may be a little bit more frequent, but what are some other pearls that you might have seen that work best for patients with hemophilia A?

Lisa Schrade, PharmD: Nowadays it seems like patients are definitely getting diagnosed earlier in life, whereas that was not the case in the past. My big thing is patient autonomy, especially with the younger ones. We want them to take responsibility of their healthcare, be an integral participant in it, not just allowing mom to continue to do their injections and order their medication. Once they become competent enough, certain age levels, again, it varies based off the patient, we want them to be able to learn how to order their own medication and administer their own medication. There are so many uncontrollables when it comes to hemophilia patients that this is 1 aspect of their disease state that they actually can control. They can control their compliance, they can control when they want to call the pharmacy and refill their products, what supplies they want. They can be very specific and detail oriented and we want them to have that kind of control so that, like I said, their compliance starts at an early age and continues on. For our older patients, again we do the compliance calls because we understand as adults there's so many other things that are going on in life, especially if you have children involved. We want to try to help them with their adherence by calling them every 3 weeks, checking in with them. Even for our PRN (as needed) patients that don't fill on a regular basis, we still try and call them like once a month, every 3 months, just to say, "Hey, have you checked your medication stock yet? Is it still in date?" With us, if they've been with us for a while, we actually track it ourselves so we already know if it's in date or not, but again we're planning to see that this is something they have to do regularly and also establishing a routine. Just like, you know, teaching the kids to brush their teeth when they're little, you need to teach them that they have to infuse on a regular basis. They can't just be like, "Well, I think I have time today, I'm going to do it right now." You have to schedule it in, make it like an appointment, schedule the time to make it happen, because if you're just trying to do it on the fly, you're going to have issues every single time about why it's not going to happen. Then 1 day delay turns into 2 days, which turns into a week, and the next thing you know, you're in the emergency room.

Jonathan Ogurchak, PharmD, CSP: Well, I like that adherence type of conversation Building the routines and things like that. Let's kind of center that around another patient case, if you will, just so it looks at the specialty pharmacist perspective. Let's say we have a 9-year-old boy, he was diagnosed with hemophilia A a couple of years ago, maybe 4 or so years ago, started on factor 8 prophylaxis, was adherent, but now he's becoming less and less adherent, and it's probably seen by the specialty pharmacy first. As a provider, maybe you want to know what are some things that we can look to do to switch. What are some of those conversations that you might be having with the specialty pharmacy to either identify those types of patients or be more to make a change?

Robert Sidonio Jr, MD, MSc: We obviously will monitor for bleeds. Our hospital, every night if somebody could call the night before, or overnight, or like I was reviewing this morning, there were 3 phone calls from different hemophilia patients. You get that idea, the nurses all know to follow up the next day and keep track of these patients. But obviously the touch points, there may be more of those with the specialty pharmacy from any number of their members. We have to make sure we're communicating with them and hopefully they feel comfortable to call us and say, “hey, you know, they're not ordering factor like they're supposed to, there's no way that they're adhering to what you're prescribing.” Or we've noticed that they've skipped, skipping a lot of doses when we call them. You have to have these honest conversations with the families and you also have to tell them that we understand they're not a perfect world. They're things that happen. In some kids, it's very easy to administer. In some kids, their veins are just very difficult. Some kids, their mental well, they may have PTSD from a bad couple of events in the emergency room where it took 15 times to stick them. They may remember that for many years. You have to sort of give people that sort of grace and understand, yes, it's going to be difficult and hopefully they will recognize it and call you at a time. That's not always the case. Oftentimes it takes a bleeding event, a trip to the emergency or an admission. Then you have to have this conversation like we have to make a change. We can't have this happening. In, this day and age, we just can't allow children to have significant bleeds. You're hoping that everybody's communicating with each other, understanding that it's all in the benefit of this patient. When we talk about, if they make the decision they want to switch from factor 8 prophylaxis to emicizumab, there's a number of ways you can do it. I think it's really important when you work in these clinical trials, you understand things that maybe you didn't before. But for example, if an inhibitor patient was on the trial, they stopped their bypassing agent a day or 2 before and then they started immediately. There's no overlap. There were no safety signals, there were no concerns, and there was no increase in number of bleeding events. If you look at the non-inhibitor patients, you could simply overlap by a week. Some people overlap by a number of weeks. To be honest, personally, I feel like it's unlikely that they'll need more than 1 week of overlap, meaning that you continue to factor 8 prophylaxis during the loading phase. You could stop it as early as a week, 2 weeks, 3 to 4 weeks. Typically after a week, they've achieved fairly reasonable therapeutic levels, and you have to remember on the trials, they were evaluating doses that were a half to a third lower than the actual prescribed dose, and those patients did extremely well. You have some options. You work with the family on this, particularly if there's something that's about to happen. They have soccer practice this week, or you try to say, "Okay, for the first few weeks, we want to take it easy. Let's get the level up to where it needs to be." It's much more forgiving with a 28-day half-life. You obviously want to establish a ritual, but you don't have to worry about what time of day. If you do it Saturday morning, you could do it Saturday night the next week. It doesn't really matter. It gives people a little bit more freedom.

Transcript is AI-generated and reviewed by a Pharmacy Times editor.

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