Expert panelists share their personal understandings of how dedicated hemophilia treatment centers and informed pharmacists can impact the management of this disease.
Peter L. Salgo, MD: Something came up in our discussion that is going to come up anyway, which is the HTC or Hemophilia Treatment Center. What the heck is that?
Tim Boonstra, RPh: Well, there are about 140 of them in the United States. I could say they’re just awesome.
Peter L. Salgo, MD: Heck of a definition.
Tim Boonstra, RPh: I know, I know.
Robert F. Sidonio Jr, MD: We’ll take it. We’ll take it.
Tim Boonstra, RPh: Every hemophilia patient should be associated with one. In our center, for instance, we have a group of hematologists. We’ve got a couple physician assistants, 3 nurses, 2 CMAs [certified medical assistants], a physical therapist, and we have an onboard social worker. We’re fortunate that we have an in-clinic pharmacy, and I have a couple of pharmacy technicians and a business manager. We have a person who does research for us. We have data collection people. We have a program manager. We have someone who does all of our appointments and scheduling. It truly is awesome.
Robert F. Sidonio Jr, MD: The whole terminology now is ‘medical homes’, and hemophilia has had medical homes since the mid-70s. We’ve been doing what everybody is trying to do for decades.
Peter L. Salgo, MD: Now, you said there are 140 of them, right? It’s a big country, so 140 is pretty dilute.
Robert F. Sidonio Jr, MD: Yes.
Peter L. Salgo, MD: Are they accessible to people with hemophilia who can’t to get to them? Where are they located? Give me the skinny on them.
Lacey Chapman, RPh: Well, they’re normally in the big metropolitan areas.
Peter L. Salgo, MD: What a shock.
Robert F. Sidonio Jr, MD: Not surprised.
Lacey Chapman, RPh: We have one in Philadelphia. There’s one in Baltimore; there’s one in Morgantown, West Virginia; and there’s one in Pittsburgh. That’s the area that I work within. My pharmacy works a lot with the Colorado HTC because we have Colorado Medicaid at my pharmacy, and that one’s great. Each patient has their own nurse, so when you call you ask for that nurse and you know if you have a question about a prescription, you can talk to directly to her. They have, like I said, dentists, physical therapists, and everything all in one. People who actually go to a HTC have a 40% reduced mortality rate compared to patients who don’t use an HTC.
Peter L. Salgo, MD: Let’s just stop there because that’s an astounding number. I did not know that. Forty percent?
Tim Boonstra, RPh: Well, they’re experts.
Peter L. Salgo, MD: But that’s ginormous.
Robert F. Sidonio Jr, MD: It makes sense, right?
Peter L. Salgo, MD: Yes, that’s ginormous, which brings the other question obviously to the fore. Who can’t get to them?
Lacey Chapman, RPh: Yes. And we do have patients who can’t get to an HTC. We had one patient who was homeless and was living out of his car. But we have patient representatives with my pharmacy, and they’ll cover a certain area. They do in-home visits and check on the patients. And his rep actually physically took him to the HTC for his appointment because he didn’t have access.
Robert F. Sidonio Jr, MD: But think about all these rural areas. We’re all from relatively big metropolitan areas, but states like Montana have very little. It’s hard to attract physicians to go there for hemophilia care where there may not be that many patients. And so, those patients have to go to places like Colorado, multiple states over. And because of the issues with HIV and hepatitis, some patients left that community and never came back. We’re hoping that the next generation will see the benefit of the HTCs and that we’ll have less people taken care of outside the centers.
Peter L. Salgo, MD: It occurs to me that this is a great, great opportunity for telemedicine, at least getting advice and interacting in some way.
Robert F. Sidonio Jr, MD: Sure.
Peter L. Salgo, MD: Is this happening?
Tim Boonstra, RPh: Yes. Our center was asked to participate because of our good track record of treating patients. Our local Blue Cross group was looking for that very thing.
Robert F. Sidonio Jr, MD: There are a couple centers that have trialed this out, such as Roshni Kulkarni and Michigan State. Michigan has these areas up in the upper peninsula, and they’ve been utilizing it. It’s fantastic. People are looking at their joints on the TV screen. It’s all trying to figure out how we can make sure we get reimbursed for our time and at the same time, we obviously want to take care of the patients.
Peter L. Salgo, MD: There are 2 separate silos here.
Robert F. Sidonio Jr, MD: Yes.
Peter L. Salgo, MD: Reimbursement is important, but there’s also patient care.
Robert F. Sidonio Jr, MD: Yes, definitely.
Peter L. Salgo, MD: From the patient care perspective, what I’m hearing is that this is great stuff. Now let’s let the business people work this out.
Robert F. Sidonio Jr, MD: We have patients send pictures. We have a dedicated e-mail where they send pictures that they say, “Oh, Johnny fell and hit his head.” When I’m on the phone, I don’t know what that looks like. Sometimes they just send a picture. We’ve been doing that. We started including those in the charts and we talk to them later about how for that, I probably would have given a higher dose than you did. And so, I think it’s nice that we have that.
Peter L. Salgo, MD: You can put the disclaimer in, usual text messaging rates apply.
Robert F. Sidonio Jr, MD: Yes, yes. It goes to a separate e-mail that has an auto reply, “We’re not responding to this immediately,” yes.
Peter L. Salgo, MD: Got it. Now, we’ve been talking about pharmacologic response in terms of pharmacists. But pharmacists do more than that, right? They cover all sorts of areas of patient care.
Tim Boonstra, RPh: Well, I think what we could do is act as the eyes and ears for the rest of the care team. Because if they’re on prophylactic treatment, patients are going to be calling once a month or we’ll be calling them once a month. We really get to know them and get a sense of what they’re doing. There’s a series of questions that we’ll all ask including, How many doses do you have left? It gives us a guide as to how many we dispensed last month. We can take a look at that quickly and gauge their adherence to their treatment. Have you had any bleeds? Did you have to treat extra for those bleeds? What did that look like? We share that information back to the care team.
Peter L. Salgo, MD: You’re not just renewing the scripts here.
Lacey Chapman, RPh: No. We like to think we do a lot more.
Peter L. Salgo, MD: You probably do. If you were going to pick the one thing that you do that most people would think would not be the pharmacists’ purview, what would that be?
Lacey Chapman, RPh: Like Tim was saying, in hemophilia pharmacy, we’re really important because we check in with the patient every month and that doesn’t always happen. You might see the doctor every 6 months. So, if a patient is really struggling, or having a lot of bleeds, the doctor may not know that. We can make an intervention and say, “Hey, he needs more bleed doses” or “Do you want to increase his dose? Should we increase the frequency?” and make that recommendation. They might be exercising more, and they need more bleed doses. The doctor might not know that, so touching base with that patient every month is a good thing to let the doctor know.