I’ve always been an admirer of John Taylor, and I’ve known him since both our boys with hemophilia were born in the 1980s. His story is so inspiring! I am pleased to share some of his trials and triumphs, as well as his outlook on hemophilia B and the factor IX product he is helping to bring to market.
by John Taylor Sr.
Nearly 25 years ago when our son, John Taylor Jr., was born, my wife Joyce and I were informed that he had hemophilia B. This diagnosis changed our lives. When your child has hemophilia, it’s all encompassing. As a family, you struggle through it every day. But what started as an unknown, daunting journey has developed into an expedition of hope.
In 1990, we were told that there were few treatment options for John. Determined to find the right treatment and support for ourselves and other families coping with hemophilia B, we reached out to the scientific community. This quest led me to incredible passages in life—founding the Coalition for Hemophilia B in 1990, becoming an activist for FDA approval of additional factor treatments, and starting a company dedicated to advancing access to hemophilia B treatment.
That company was called Inspiration Biopharmaceuticals, which our family co-founded with Scott Martin, another father of a son with hemophilia. Our mission was to bring product choice and access to the hemophilia B community. Because we understood the impact of this condition on our own families—as well as many other families we met also coping with hemophilia—we were determined to start a company that would address the concerns we were all living with. Thanks in part to our work, a lot has changed for families living with hemophilia B.
When Emergent BioSolutions, a company whose goal is to improve the lives of people with rare conditions, acquired the recombinant Factor IX we were developing, families felt empowered knowing that there was now a company that was working directly for us.
One demand that is finally being addressed by pharmaceutical companies is treatment choice. Soon, people with hemophilia B will have even more product choices for bleed control and prevention than ever before.
One product I am particularly excited about is IB1001, from Emergent BioSolutions. IB1001 is a recombinant factor IX product that began development at Inspiration Biopharmaceuticals. I am so proud to see Emergent continue the work we began at Inspiration, and to know that they are seeking to gain approval for IB1001. Emergent’s focus on developing treatments for rare conditions and blood disorders and their experience
in addressing the needs of small patient populations makes them a welcomed addition to the companies serving the hemophilia B community.
Emergent’s mission is simple—to protect and enhance life. Although they are new to the hemophilia community, their commitment to IB1001 and to improving the lives of patients with hemophilia B makes me eager to see them bring to market a product I believe in so strongly.
When I reflect on this journey, I can honestly say that every stop along the way—and every person I’ve met from our community—have added incredible value to my life. My son and this amazing community have given me the drive and determination to keep going. When a company like Emergent comes along and commits to understanding and responding to the needs of the hemophilia B community, I can confidently say that my journey has been worthwhile. With dedication and the commitment that come from having lived with the condition, and a thorough knowledge of our community, we are proud to have been part of the development of a new recombinant factor IX product. Standing with you, from a family like yours. This is a journey we are taking with all of you.
John’s work on behalf of the hemophilia B community continues to make a positive impact. If you’d like to learn more about IB1001, the product he helped develop, and Emergent BioSolutions’ efforts to finish the work John began, please visit www.ebsi.com/hemophiliab. To learn more about the Coalition for Hemophilia B, visit http://coalitionforhemophiliab.org
Our hemophilia industry is changing as fast as you can imagine. Two weeks ago we shared that Pfizer was buying Wyeth. Now we read on the news wires that Inspiration Biopharmaceuticals, Inc. is starting phase 1 clinical trials of “IB1001,” a new recombinant factor IX product. A phase 1 clinical trial means that the product is being studied for safety, tolerability and efficacy. If this is successful, then patients will be enrolled and given the product.
The most interesting thing about Inspiration is that it is a pharmaceutical company co-founded by John Taylor, father of a child with hemophilia B. Now that’s something I think that has never happened in hemophilia before. John states, “This is the first therapy for hemophilia B patients in the past two decades. We continue to develop a factor product portfolio in both IV and non-invasive dosage forms for hemophilia and other coagulation disorders.”
Why would anyone want to develop a factor IX product in a market where recombinant BeneFIX (by Wyeth) has a 90% or more market share? Good question. Could it be lower price? What will differentiate this product from BeneFIX? Why would people switch?
I don’t know but it will be interesting to find out. Inspiration Biopharmaceuticals was founded in 2004 with the mission to revolutionize treatments for hemophilia. An exciting mission in a time of great change. Stay tuned!