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EXECUTIVE CORNER
Dear Community Members, After our most recent HTC visit, he asked about the longer-
lasting factor: “why am I not doing that?” We talked about both
When my son Nicholas was born 14 years ago, gene therapy the factor products that are available and some of the consid-
was the subject of conversation in the community, and longer- erations that would go into making the decision to switch. His
lasting factor was barely mentioned. Over the years, the em- answer? He’d think about it.
phasis seemed to flip and, for a variety of reasons, gene therapy
took a bit of a back seat while new, longer-lasting factor prod- I admit, it can be overwhelming to think about these topics and
ucts were introduced to the market. Recently gene therapy, engage in conversations with my son. I feel fortunate to have
along with other novel therapies such as RNAi and bi-specific not only a wonderful HTC, but also HFA as a great source of
antibody, have reestablished themselves as the subject most on information and support.
community members’ minds.
As overwhelming as it may be with so much change in our com-
In the fourteen years that I’ve been fortunate to have Nicholas munity, it is an exciting time. Just look at the comprehensive
in my life, 18 new products have been released onto the mar- list of products on the market (p. 9) and the growing list of new
ket. As a mom trying my best to navigate my child’s healthcare and emerging therapies being produced and studied (p. 17)!
needs, I’ve felt that the amazing growth within the industry has What a time to be involved in this special community! To our
added to the everyday challenges that hemo-moms and -dads knowledge, this issue offers the first time such a detailed list
face. And as the product options have changed, so too have my of products and therapies has been published and I’m thrilled
thoughts on those options. When Nicholas was a baby starting to be able to share it with you all. Our team at HFA worked
prophylaxis, my husband and I just wanted to find a product diligently with manufacturers to ensure that the information in
that worked well for him while we prayed for no inhibitor de- this issue is as timely and accurate as possible.
velopment.
Also in this issue are a number of informational resources and
Once we were several years into three-days-a-week prophylax- educational tools to help us all better understand some of the
is, a long-lasting product came to market and I thought without more complex issues we encounter in the community. From a
hesitation that I’d want Nicholas to try it as soon as possible. deep dive into how clinical trials work (p. 22), to the infograph-
Even if it cut down just one infusion per month, I thought it ic of how a drug is brought to market by the FDA (p. 30), this
would be a big step forward for us: just one less needle stick issue is packed with great information. I couldn’t put the issue
would be worth it. Complicating the conversation a bit is the down until I read it from cover to cover, and hope you enjoy it
fact that Nicholas is older and his medical care is no longer as much as I did!
completely my decision. While he’s not quite ready to make all
of his own medical decisions, he is old enough to have a say. Warm regards,
Tracy Cleghorn
Board Chair
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4 Dateline Federation | Special Issue Fall 2017
