A Promising Future with Hemophilia B

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. 
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John Taylor Sr.

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


This is a sponsored public awareness notice.

Namaste from New York!


Last Tuesday I dusted off my salwar kameez outfit from Pakistan, hopped on a plane with executive director Martha Hopewell of Save One Life, our child sponsorship nonprofit, and went to New York City for a wonderful fundraiser called “Bollywood Chic,” hosted in the art studio of Hunt Slonem.

The studio takes your breath away: cavernous at 15,000 sf, and filled from ceiling to floor with framed art, statues, and even a museum quality collection of butterflies that was stunning. In the center of the studio: bird cages filled with colorful macaws and doves. Hunt’s specialty is painting birds; you can see his famed parrots on a new Tiffany set of serving ware. The birds are raucous when not being fawned over; they demand attention by screeching. This added an exotic flavor to the evening!

How did we snag the goodwill of an artist of Hunt’s calibre? Through board member Tara Reddi, who is vice president of the Marlborough Gallery in New York, and has a nephew with hemophilia in India.

Guests arrived around 6:30 and stayed till 9, sampling some wonderful Indian-style food, and wine at our bar, and listening to Bollywood soundtrack. Guests could wander freely throughout the studio, which is subdivided into different rooms, each with a theme. The Lincoln room is filled with Hunt’s portraits of Lincoln in many colors. Another room is filled top to bottom with framed paintings of rabbits. Another room is filled with Greek or Italian statues. Another room contained a massive round table and filled with candles, looking like an invitation to a seance! Guests were really intrigued by the decor!

We were pleased to have with us Dr. Ranjan Kulkarni from the Nasik Chapter of the Indian Federation of Hemophilia. She is our program partner there, and has enrolled many children with hemophilia in Save One Life. She just happened to be visiting in New Jersey, which worked out perfectly! The fundraiser gave her a chance to meet two other doctors and sponsors: Dr. Lucy and Dr. Shipra, both attired in lovely Indian dresses!

Save One Life now sponsors over 550 children in nine countries, giving them funding that they would normally never receive. Funding is used for transportation to clinic, to buy medicine, and to pay school fees. The nonprofits that administer the program–our program partners–check in regularly with the children, to ensure they are doing well. So more than just a charity, we are guaranteeing these kids get seen, are known and are helped.

Our deepest thanks to Hunt Slonem for generously allowing us the privilege and pleasure to spend an evening at his studio. Thanks to Tara Reddi for organizing this marvelous event, which required a lot of hard work. Thanks to all the guests who showed up despite the dreary weather, many of whom were friends and patrons of Tara’s and Hunt, and who supported the fundraiser. And thanks to my friends at NHF, whom I was so happy to see present!

Many thanks to two companies who helped underwrite the event: CSL Behring and Inspriration Biopharmaceuticals. All proceeds of the event will go towards our India program, where the bulk of our beneficiaries are located. I’ll be traveling to India in September to check on our program and will be sure to keep everyone posted. Namaste!

For more information or to sponsor a child in need: www.SaveOneLife.net
Also see: www.cslbehring.com, www.inspirationbio.com, www.marlboroughgallery.com

An Inspiration

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!

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