Members of the bleeding disorders community came out to share their experiences with bleeding disorders treatment with the FDA.
HFA worked with partners like NORD, PPTA, and NHF to ensure that our community was effectively represented. Patients and advocates of every age, every background, and with several different conditions came out to share with the FDA their hopes, fears, highlights, and trials in treating their conditions.
Below is the testimony of Dan Bond, of Texas. Dan shared his experiences having watched the evolution of hemophilia treatment over the last six decades Though fortunate enough to spontaneously clear Hepatitis C (HCV), Dan still lives with HIV, which he acquired through contaminated treatment products in the 1980s. Dan’s experiences strengthen HFA’s message to the FDA: above all else, we need to ensure that our therapy and treatment options remain safe.
My name is Dan Bond. I’m a 60 year old engineer with severe Hemophilia B. I’ve spent my career making things go faster, so I hope this will be brief.
I’ve had a total of 6 joint replacements: both knees, both elbows, one ankle, and one hip.
Technically, only 5 were due to bleeding. The hip replacement was after a fall down stairs while going to breakfast at an NHF lobbying event here in DC a few years ago. I blame the smell of the bacon.
I’ve also had a total of 5 revisions on my replaced elbows.
Joint replacements are like getting a new kitchen. The revisions are like unclogging a sink. Both are good to do, but one is far more rewarding.
The replacement surgery cuts through muscles and that left me with very little strength in my triceps, making it exceptionally difficult to reach overhead or to turn wrenches.
In addition to the limited muscle strength, there is only a 1/8″ pin connecting the 2 parts of my elbow. My first elbow repair surgery was to replace that pin after I bent it opening a jar. I have to be very careful using what little strength I have.
My first job after high school was as a deckhand on a Caribbean charter sailboat that was spending the off season in Galveston. It seemed like a great life. I dreamed of living on a boat and sailing around the world. Never mind the idea of infusing fresh frozen plasma in the middle of the Atlantic, it seemed like a good idea to a 19 year old.
As my ankles degraded with my joint disease it became clear that I couldn’t safely walk on a pitching deck. I haven’t sailed in over 40 years.
In college, I discovered bicycle racing. I trained in Houston with national championship riders, serving mostly as traffic for them to pass. After my elbow replacements, it became too dangerous to ride and expose the fragile implants to a crash. I haven’t ridden a bike in over 20 years.
As an engineer, I enjoy building things. It’s grown increasingly difficult for me to do that. It’s frustrating to know that I could unstick a bolt and not hurt myself if I could just get a longer wrench to fit. Working under a car is out since I can’t reach overhead.
With my knees, kneeling is out. Pretty much all I have left is telling other people what to do. That’s fun in its own right, but not as satisfying as doing it myself.
60 years is a long time with this disease.
Since there was a history of hemophilia in my family, there was a relative in the delivery room ready to give me a direct transfusion. Fortunately, it wasn’t needed.
I’ve seen treatment progress from that to dried plasma to fractionated plasma, to plasma concentrates, to recombinant clotting factor, to long lasting factors. In 2002, I was a test subject for gene therapy.
With each leap the condition became easier to manage. But of all these advances, the most life changing was going from being hospitalized for treatment to self-infusion.
I began self infusions with fresh frozen plasma in 1975. Factor concentrates, 3000 iu vials, easy reconstitution are all lovely improvements, but they pale next to the change from hospital-based administration to self-infusion.
The freedom allowed by self-infusion made pretty much everything I’ve done possible. It gave me the ability to travel, to get an education, and to do what I enjoy.
Like 10,000 of the 20,000 people with hemophilia who were alive in the 1980s, I contracted HIV as a result of infusing plasma products contaminated with the virus. Thousands of the infected died, but thanks to early and consistent treatment and no small amount of luck, my HIV is undetectable. Hepatitis C kills more people with hemophilia than HIV now, but last year I became one of the lucky few to clear hep C spontaneously.
With my diseases under control, my biggest worry is about the social contract that keeps me alive. In my 60 years, I have cost the citizens of this country well over $20,000,000 in inflation-adjusted dollars. My insurance this year has paid out $191,000, and this was a year with no unusual procedures or surgeries.
And so, when I say I owe a great debt, it’s not just a metaphor.
Hopefully, my experience is worth some fraction of that. I’m also trying to pay it back by volunteering for phase 1 and phase 2 trials, including that gene therapy trial, which has led to some real success. I’m also on product and scientific advisory boards, as well as the board of my local chapter.
We often say that the bleeding disorders community is like a big family, and like any parent, I’m just trying to make things a little better for the next generation. Thank you.