|Local Boston hemophilia families |
tour a manufacturing plant
|Carolyn shares her story|
We were greeted by Bob Duane,
|Tom Porter of Pfizer with families|
First, we met with a large group of employees, and heard a presentation by Tom Porter, PhD, Senior Director, Analytical Research & Development, Global Biologics, who gave an overview about how factor was produced. He was so enthused about his work; it was refreshing and delightful! He reviewed the history of hemophilia innovation of products from Pfizer, including creating the first recombinant factor VIII product in 1992, which was then licensed to Baxter. I had actually forgotten that little piece of history.
Then each family was invited to stand up and speak a little about their experience with hemophilia. Bob wondered if the families would be comfortable with that and we all laughed—hemophilia families usually have no problem speaking up!
|Shane is fascinated by the equipment!|
Wendy spoke about having an 18-year-old; Allie spoke about having two with hemophilia ("I win!" she quipped!); I spoke about having a transitioning 25-year-old and our insurance concerns for all in his age group; Carolyn shared about having an 18-month-old; and Diane informed the group that her baby was just diagnosed with an inhibitor. Most special was the speech by Shane, a 12-year-old with hemophilia A, who related that he is learning how to infuse better to save wear and tear on his veins.
|Explaining the process|
"It is really fun to see how factor is made and all the work that goes into it. I will definitely think of that when I infuse now," Shane comented.
|Bob Duane of Pfizer explains |
how factor is made
And what did the employees think about the families?
“Yesterday was the best day I have ever had at Pfizer. I received far more than I gave.” “I was touched and was amazed at the strength that was displayed by [the families]." “I was truly inspired by their stories and had such a good feeling all day. I’m looking forward to the next visit and other visits like this." “Having patients and their families on site really drives home the importance of our job. It never fails to touch me when I hear them speak. We do great work here. Work that keeps people alive. We sometimes forget.”
Other manufacturers offer tours of their facilities, too. I've toured the Bayer plant in Berkeley, and know other families who have seen the Grifols plant in Los Angeles, and the CLS Behring plant in Kankakee, Illinois. Ask your local rep if you can see their plant, and learn how factor is made.
And read the August issue of PEN, coming to your mailbox soon; we review all factor products and manufacturers, and chart out the new products coming in the pipeline.
Thanks to Gail McCarthy, our local Pfizer rep, for this invitation, to the families who took a day off to join us, to the Pfizer staff who made this such a pleasant and educational day and who care enough to meet and learn about our very special community.
Good Book I Just Read
The Doors Unhinged: Jim Morrison's Legacy Goes on Trial
[Kindle] by John Densmore
An unflinching account of the 2002 lawsuit by Densmore, former drummer for the 60s band the Doors, against his former bandmates, keyboardist Ray Manzarek (who just passed away in May) and former high school best friend guitarist Robby Krieger. His suit was primarily to stop the use of the name and logo of the Doors by Manzarek and Krieger, who were touring (without Desnmore) as the "Doors of the 21st Century." He did not seek to stop them from playing or from calling themselves "Of the Doors." He did not seek money from this lawsuit. Manzarek and Krieger countersued for $40 million, claiming that Densmore vetoed a $15 million commercial with Buick... and then Densmore's real beef is revealed. Densmore goes to court to preserve the noncommercialsm of the original Doors, particularly frontman and cultural icon Jim Morrison, by not "selling out" to corporate America; and to honor the Doors agreement that all bandmates had equal weight in determining decisions with equal veto power. Indeed, Densmore was backed throughout the trial by the estate of Jim Morrison, and even Morrison's father, a former rear admiral in the Navy, testified. Densmore further questions the need of Americans, and in particular his bandmates, who are all wealthy, to accumulate millions more at the risk of losing their creative purity. It's an interesting question; Densmore makes many good points, even though at times he unnecessarily takes uncomfortable jabs at Manzarek in particular. Yet Densmore himself stands to earn a lot by being a former Doors member, and writing these books! It's a head-scratcher at times, as you wonder from what angle Densmore is coming sometimes, as there are many; his arguments don't always seem clear or follow logically. It's a quick read, raises good questions and will generate a lot of discussion. From an insider, I have heard that the book is quite accurate.
|Laurie Kelley with |
Robby Krieger of the Doors
For devoted Doors fans, this is a hard book to read, to learn what has become of their legacy. I'm a bit biased as I love the Doors, and appreciate each musician for their talent and dedication, and just met up with Robby Kreiger on Saturday night at the Hard Rock Cafe--he's a nice guy, by everyone's account. He wrote my favorite song ever, "Touch Me," which I admit would have a different meaning and feel entirely if it were used as a commercial for say the iTouch. For anyone in rock and roll, it is a fascinating legal read. Two/five stars.