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Monday, June 20, 2011

Adopting the Orphan


Today I had an infusion of the “new” fibrinogen concentrate. It’s not new, I say to myself, but it is improved. I remember using fibrinogen concentrate when I was a child.

My hematologist used it sparingly, knowing that it put me at risk. His attitude was that blood products were only to be used to save a life or prevent long-term damage.

It’s been more than forty years since fibrinogen concentrate was taken off the market. During the intervening years, I used cryoprecipitate and fresh frozen plasma to manage significant bleeds. They were considered safer, but there was no guaranty. These blood products were less effective than fibrinogen concentrate because they contained other parts of the blood that I already had in my system. I also started developing allergic reactions including hives and shortness of breath.

The new and improved fibrinogen concentrate has been scrubbed clean of viruses. That’s a good thing. In early 2009 the US Food and Drug Administration (FDA) granted accelerated approval to human fibrinogen concentrate. The press release called it an orphan drug.

It’s true there won’t be many of us using this drug and it may not be profitable to the pharmaceutical company that produces it. It took me a while to decide to adopt it, to let go of the past and the future so that I could open up to the possibilities of the present.

“We cannot change our memories, but we can change their meaning and the power they have over us.”
—David Seamans