The HTC: Another Perspective

Because I know a lot of people in the hemophilia community, I’m familiar with several hemophilia treatment centers (HTCs) in addition to our own. It’s interesting to see how the various HTCs have different structures in place and different ways of doing things—for instance, the way they handle the annual comprehensive visit.

I view the model our HTC uses as primarily a “clinical” experience—we are there strictly to see Leland’s medical team to have them evaluate/discuss his physical well-being. There is little or no interaction with anyone other than clinicians. I don’t even know whether any of the other people in the waiting area have hemophilia. On the other hand, some centers have what they call a “clinic day,” where there is the added goal of community-building. Families who have things in common (usually the age of the affected child) are scheduled to come in on the same day. Time is built in for informal networking and families sometimes even have lunch together. This gives them an opportunity to connect with others who share similar issues and concerns. I especially like this model because younger families can really benefit from connecting with more experienced ones. I think this type of event can be particularly helpful in areas where there isn’t an active chapter nearby or there are obstacles to attending chapter programs.

One center I know of has a well-designed waiting area with video games, toys, and educational materials to occupy the kids and their siblings so the parents have a chance to talk. Sometimes they even have pizza for the kids. When I suggested that our HTC consider something like this, I was told it would be hard to arrange because the space they use is not dedicated to the hemophilia program—one day it might be a hemo clinic, the next day it’s an allergy clinic. I understand, and it doesn’t matter as much now that my son is almost 14, but it would have been helpful when my kids were younger and needed to be entertained so I could have had a meaningful (and hopefully uninterrupted) conversation with the doctors.

Our HTC is housed in a major hospital. We are very happy there, but my one complaint is that the staff is spread too thin. I just have to remember that my son is not the only patient there and they’re doing the best they can with the resources they have. Sometimes it seems that they’re trying to help too many people and are not as tuned in to individual needs. It can be a bit disconcerting to have a nurse ask, “Remind me how we’re treating your son...” The “personal touch” is sometimes lost in this large setting. In fact, I remember how surprised I was the first time I heard that some HTC nurses actually do infusions. Maybe most HTC nurses do, but not at our center. Another surprise was to learn that some HTC nurses are on call 24/7. My son’s team is available during business hours only; otherwise we work with the hematologist on call, who may or may not know my son’s history

That said, we are very happy at our HTC and have built a strong relationship based on trust and respect. We probably have more regular, ongoing contact with the HTC because Leland’s inhibitor makes his hemophilia a little more high maintenance. As such, I feel I’ve developed a friendship and a personal connection with the people there, especially with one of Leland’s nurses and his social worker. In earlier years, I sometimes felt a bit disconnected from Leland’s hematologist, but I voiced my concerns to the team and that relationship has improved. Most important, I feel that because we’re at a large hospital that’s recognized as one of the best in the nation, we have access to some of the best care available. This goes beyond bleeding issues; when Leland started experiencing severe pain, we had the best pediatric pain doctor in the country consulting. When he needed major knee surgery, I knew we couldn’t find a better orthopedic surgeon.

Different families have different needs. Our HTC might not have the “personal touches” that are important to some families, but for us, it’s all about managing Leland’s inhibitor in the best way possible. And when it comes to that, I’ll take top-notch clinicians over an entertaining waiting area any day (even if they do have pizza!)