A Christmas Carol

God Bless Us Everyone… with Hemophilia

Doug and I saw a local live performance Friday night of Charles Dickens’ “A Christmas Carol.” It was wonderful! A classic story about a greedy old man who spends his whole life counting his money, living frugally and sharing his wealth with no one. The story is about his visit Christmas Eve by three ghosts: The Ghost of Christmas Past, Christmas Present and Christmas Future. Really four, if you include the ghost of Jacob Marley, his business partner in life, who first comes to warn him of the coming apparitions.

The ghost of Jacob Marley warns his former partner Ebenezar Scrooge that unless he changes his greedy, callous ways, he also will carry with him the chains he forged in life, for all eternity.

It’s a brillant story, and a metaphor for life. What is most important? Who do we most care about, and why? What will be our legacy when we die?

In the story, the Ghost of Christmas Present takes Scrooge to the house of his employee, the long-suffering Bob Cratchit, who has a son with a mysterious illness. The illness is never disclosed, but we see its symptoms: a crutch, crippling, limping, pain. And when shown the future, little “Tiny Tim” does not survive.

Every time I watch this now, I wonder: could Tiny Tim have had hemophilia?

It’s not far-fetched. In 1859, Tiny Tim inhabited London when Queen Victoria’s son Leopold did (born in 1853), and he had hemophilia. But Tim’s condition was never disclosed. He didn’t have a cough (denoting tuberculosis, common at the time), or any other pain.

I’m going to imagine he did have it; and thanks to Scrooge’s transformation to a benefactor, Tim got medical care, nutrition, support and grew up. Of course, they did not have commercial factor. But even Leopold lived to his early 30s without it.

Tiny Tim narrates the story of A Christmas Carol at the North Shore Music Theater in Beverly, Massachusetts

To those with hemophilia then and now, in the words of Tiny Tim, “God bless us, every one!” And happy holidays!

A Christmas Carol has never been out of print, and is one of the most enduring, powerful stories in English literature.

Tour of Bayer Plant

I escaped the chilly Boston weather for a few days to visit some community friends along with representatives of Bayer in Berkeley, California for Bayer’s new Multidisciplinary Board meeting. This is the second meeting we have held this year. A noneventful eight-hour plane ride brought me to beautful San Francisco, surely one of America’s prettiest cities. I caught up with Mike Rosenthal, formerly executive director of the Hemophilia Association (Arizona), who is still active in the community. Later, at dinner, our collegues included Dr. Craig Kessler (Georgetown University), who was just elected chair of NHF’s MASAC, Kyle Callahan, president of Hemophilia Health Services, Sandy Oliver, director of Public Policy and State Government Affairs at Bayer, Paul Bedard, director of Kogenate FS marketing and Terry Tenbrunsel, vice president of Bayer. We also enjoyed the company of Harp Maan, a young business student with hemophilia who had just finished Bayer’s first leadership program. This is a 10-week internship that exposes the participant to all aspects of working for a pharmaceutical company, from marketing to production to patient activities.

On Friday we spent the morning learning more about Bayer’s products and providing feedback about the community’s needs. In the afternoon, we had a fascinating tour of the production facilities. We learned how Kogenate FS is made. This involved gowning up, which requires wearing special garments and layer and layers of protective plastic material so we do not contaminate any aspect of production. We had an escort at all times who explained the process scientifically, and also made sure we did not violate any procedure that would cause contamination. From fermentaton to purification to packaging, it was an impressive look at how recombinant factor concentrate is made. Accompanying me was Mike Rosenthal and Paula Hackenjos, Terry’s executive assistant. An employee of Bayer for 20 years, this was Paula’s first tour of the plant, and she and I joked that we felt like we were wearing our pajamas as we paraded by the scientific machinery, cold rooms, and sterilization equipment.

I was deeply impressed with the manufacturing process and how it is designed to provide safety at every level. The staff were knowledgeable and warm, and so enthusiastic about their work! And you would not believe the steps and procedures it takes just to make one vial of factor!

That night we all reconvened for a lovely dinner, where we all became better acquainted, while overlooking San Francisco’s vast bay, glittering with lights strung from the bridges and twinkling from passing boats. Dr. Glenn Pierce joined us. You may recall Glenn was NHF president two times, is a doctor, a person with hemophilia, and now is vice president of Preclinical Development at Bayer. He is also a personal friend of both my husband Kevin and mine. Thanks to Terry and Bayer for the gracious welcome, dinners and chance to tour the plant. We appreciate the forum for airing our comments and concerns, and to meet with some dear friends in the community.

(Photo: Me, Mike Rosenthal, Paula Hackenjos looking like Blue Smurfs, according to Mike!)

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