Hemophilia: Living Through an Evolution of Treatment

2019-02-28 15:10:00
Tags: Hemophilia,Peer Exchange,specialty pharmacy


Having been started on treatment for hemophilia in the 1970s, Eric Mamos shares insight on the changes in pharmacologic therapy he has seen throughout the years.

Transcript

Doris V. Quon, MD: We talked a little bit about your hemophilia and how you were diagnosed. The treatment options at that time you were diagnosed back in the 1970s were limited. What treatment options were you started on initially?
 
Eric Mamos: My mom has told me that with my brother, who was born in 1971, every bleed required a trip to the hospital. I believe she told me that when I was born, they started doing the home infusion program. I don’t know if she had to take me to the hospital in the first year. She may have, but I don’t remember ever having to go to the hospital to get treatment. I remember always having treatment at home. It was always factor VIII. It was always at home. My dad did it, then my mom took over, and then I learned how to do it. I think I was featured in a magazine about learning how to do infusions back in that day.
 
Doris V. Quon, MD: You remember getting your infusions at home.
 
Eric Mamos: Oh, absolutely. I don’t remember any other place. I would sit on top of the washer and dryer, and my dad would infuse me in the foot. I guess there was more room on my foot because eventually I grew, and it felt like he was going into the bone. My dad said, “Enough. I’m not doing this anymore,” so my mom was forced to take over.
 
Doris V. Quon, MD: Interesting. Do you remember what age you were when you learned?
 
Eric Mamos: Maybe 11 or 12 years old. I remember my doctor at the time at the children’s hospital because it was another feature in a magazine. It said, “Look, hemophiliacs doing shots at home,” and they had me sitting there with my big afro at the time learning how to do a shot.
 
Doris V. Quon, MD: It’s very common for patients with hemophilia to learn how to self-infuse. Many patients actually learn at hemophilia camp. They learn as young as 8 years old. The average age is about 10 to 12, when they learn to self-infuse. That’s pretty common. Was the treatment effective for you?
 
Eric Mamos: The treatment was as effective as I wanted it to be. I did infusions when I needed to do infusions. The problem was I needed to do infusions a lot because I played basketball and I played tennis. I played quite a few sports, so I was always having a bleed somewhere, but I was always stubborn, too. I thought, “Oh, maybe it will go away.” It never went away. I was not known for doing early infusions and that made me pay the price.
 
Doris V. Quon, MD: Back when Eric was growing up, it was the norm to do what we call on-demand treatment, meaning when you had a bleed, you treated yourself. Now, studies have shown that there are benefits to doing regular infusions to prevent bleeds from happening. Nowadays, prophylaxis or regular infusions of factor VIII are common.
 
Eric Mamos: Right.
 
Doris V. Quon, MD: As I said, it is the standard of care for patients with severe hemophilia. We’ve discussed it before, and I know you’ve considered going on prophylaxis, but you never actually went on full prophylaxis.
 
Eric Mamos: I’m lazy.
 
Doris V. Quon, MD: What do you think about that? Many of the patients in your age group have resisted doing that.
 
Eric Mamos: When we talked about it, I remember going back and looking through my logs. I’m going to do this mathematically, right? This was long after I stopped being active. I wasn’t having many bleeds, and when I averaged it out, I was only using a shot a week. I really wasn’t bleeding that much. I just didn’t think that doing prophylaxis at that stage of my life was really going to be any better because I wasn’t bleeding. I wasn’t doing anything. It’s hard to bleed when you sit behind a desk all day.
 
Doris V. Quon, MD: Well, you have children.
 
Eric Mamos: I don’t let them jump on me.
 
Doris V. Quon, MD: You encourage them to play basketball.
 
Eric Mamos: I do.
 
Doris V. Quon, MD: And you coach them.
 
Eric Mamos: I do.
 
Doris V. Quon, MD: That would be reason at the time to start prophylaxis. We’re just trying to improve your outcomes by offering you better medications, and I think my role as a physician is to let you know what is available for you and to make recommendations on what to do. But many patients like yourself grew up taking factor as they needed it and did not see the benefits of using regular infusions to prevent their bleeds. But I think that times are changing, and people evolve and change.