"Essentially cured," Fort Collins man with Hemophilia A successfully tests lifechanging medication
Hundreds of years after hemophilia was first discovered, a new medication that was successfully tested on a Fort Collins man could be an answer for those living with Hemophilia A. Andrew Schulz, a 36-year-old in northern Colorado, was one of 112 participants in a trial for Roctavian, a medication that recently secured FDA approval.
Schulz was born with hemophilia, a disorder that prevented his blood from clotting. Since his youth he has been giving himself injections to help combat the symptoms of the disorder.
"I've estimated 3,000 shots I've given myself," Schulz told CBS News Colorado's Dillon Thomas.
Schulz, like many others living with hemophilia, was raised taking many precautions when it came to protecting his physical health. Doctors limited his ability to participate in physical activities and sports that could cause bruising or bleeding.
"If I would get bumped I would just keep bruising," Schulz said. "I had ankle problems, I couldn't run a mile and things like that."
For decades Schulz had to carry medications with him, injections that would help him avoid bleeding and bruising. He said it was a burden to have to carry the medications on flights, and to have to take the shots before going to events like concerts.
However, he recently heard about a trial taking place in St. Louis. A medical company was testing a medicine called "Roctavian," a single infusion gene therapy that was believed to help stop most of the symptoms of Hemophilia A.
Schulz signed up for the trial and was given the one time infusion.
"It essentially cured me of hemophilia," Schulz said. "I went from this cadence of a shot three times a week, traveling with needles, to no shots."
It has been years since Schulz participated in the trial. Like most others in the research, he has been able to move on with life without needing his regular medications.
"My whole lifestyle has shifted because of that," Schulz said. "For 30-something years of my life I realized I had a negative outlook on my health."
Thanks to trial participants like Schulz, the FDA has now approved the medication and the first and only gene therapy to combat Hemophilia A.
Because he was a participant in the trial, the medication and treatment was free. Schulz said he was hopeful that others would have insurance that could help them receive the same level of care without breaking their banks.
Schulz said his life has dramatically changed since receiving the infusion.
"I started hiking, building up my muscle and reclaiming this body," Schulz said.
Schulz is now able to be more active with his wife and three children, and is moving on with a healthier life free of concerns from his hemophilia.
"That was just amazing. I just was breaking through ceilings I thought were always going to be there," Schulz said.
Hemophilia can be passed down from generation to generation. While Schulz's daughter has his genes, she was not diagnosed with hemophilia. However, her future children would have 50% odds of being born with the disorder.
Schulz said he was optimistic that, by the time that generation arrives, there could be an answer that would prevent them from living the lifestyle he has for decades.
"The gift of the cure just feels amazing," Schulz said. "I think this is the change in hemophilia we have all been waiting for."
