Pfizer

Local Hemophilia Families Meet the Manufacturers

Local Boston hemophilia families tour a manufacturing plant

I was thrilled last week to invite a group of local hemophilia families to the Pfizer Andover manufacturing plant, where BeneFIX,a  recombinant, third-generation blood-clotting medicine, is made. Andover is only 40 minutes from my house; imagine that this amazing medicine is practically made in my neighborhood! It was a wonderful opportunity for the scientists and researchers there to meet real families, and for the families to see just how blood-clotting products are made.

We were greeted by Bob Duane, Senior Director, Site Quality and Compliance. Families were briefed about their tour, which would be a closed off tour–we didn’t need to get into special outfits to protect the manufacturing process from us and any germs we may have been carrying. But we would get to see how factor is made!
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!
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

After a lovely lunch, during which the families were able to sit casually with the researchers and scientists, the group split into two and began their tours. We saw the vats containing the medium in which the Chinese hamster ovary cells produce human factor; learned how it is separated from the medium and then harvested. In the end, product is shipped to Spain to be finished, lyophilized and packaged, ready to be sold. The sheer level of intricacies involved in each step was a bit overwhelming. We walked by many laboratories where staff worked diligently. Everything is breathtakingly clean; most tasks are automated to reduce the risk of human error. We walked on many floors, levels and peered in through large glass windows to see the giant vats where product is made. The families were stunned, at the number of employees required to make product, at the level of safety controls and at the amount of money required to make product.

“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.

“The tour of the Pfizer facility opened my eyes to the extremely long process involved in making factor,” said mother Kathy Secinaro. “It became clear that the staff there are dedicated to research and product safety. In addition to that, they truly showed they care about our community and want to know more about living with hemophilia. I never expected such a genuinely warm welcome.  Others should be strongly encouraged to do a similar tour. I hope to do it again.”

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
by John Densmore

Laurie Kelley with Robby Krieger of the Doors


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.
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.

Scholarship in Honor of a Great Lady: Soozie Courter

Last week I blogged about a great scholarship from Baxter. This week I want to share another from Pfizer.
Pfizer Hemophilia is excited to announce the launch of the new application period for the Soozie Courter Hemophilia Scholarship program.   I knew Soozie from long ago, when she actually lived in the next town over from me. A wonderful woman, devoted to her work in the hemophilia community, who left us much too early.
Pfizer Hemophilia awarded more than $50,000 in scholarships for the 2012-2013 academic year to students in the hemophilia community, illustrating Pfizer’s long standing pledge to help patients with bleeding disorders attend college and further their education. Congratulate all of last year’s winners!

These scholarships are intended for U.S. applicants with hemophilia A or hemophilia B who present the best combination of a creative and persuasive essay, excellent recommendations and superior academic standing.  Sign up now to be eligible for the Soozie Courter Scholarship. All applications must be received by no later than May 24, 2013. Scholarship winners will be announced in July 2013. For more information or to download an application, please visit: www.HemophiliaVillage.com.

Great Book I Just Read
Explorers of the Nile: The Triumph and Tragedy of a Great Victorian Adventure by Tim Jeal (Kindle) 2011
I’m a huge fan of reading about African exploration, and discovered this comprehensive gem recently. This book covers all the key players in mid-1800-early 1900 who put their lives on the line to explore Africa’s interior. From David Livingstone’s failed Zambezi exploration to Richard Burton and John Hanning Speke’s joint quest to find the source of the Nile, and their subsequent falling out, to Samuel Baker and attempts to colonize Africa, to the brash Henry Morton Stanley–arguably the most accomplished of them all–this 500-page, exhaustively researched book details the horrors, the triumphs, the Royal Geographic Society politics, the men behind the funding. Different than most other books I’ve read, this one greatly details the coordinents and pathways each explorer chose in their search for the Nile’s origins. It was a bit overwhelming at times! I was deeply impressed by the amount of research Jeal did, and how he faithfully records his sources. Less impressive is the axe he grinds against Richard Burton, who was glamorized in the movie “Mountains of the Moons,” making Speke the inferior and petty man. Jeal found just the opposite and lauds Speke, idolizes him really. I just found the comparisons as to why Burton should not be lauded a bit over the top and personal, and detracting from this otherwise exemplary book on adventure, exploration and colonization of Africa. Four/five stars!

Product and Program Updates

Even while we wait for new products to come in the hemophilia pipeline, there are improvements being made all the time with our current products. Here are two changes you might need to know about.

From Bayer: Bayer’s Factor Solutions patient support now includes a Helpline to give hemophilia A patients and caregivers a personalized point of contact for getting information on insurance, patient assistance and government assistance programs. This is for Kogenate FS users, and offers: coverage, coding, reimbursement and claim issues, verifying patient insurance benefits, understanding healthcare reform insurance changes, assessing new insurance and alternate funding sources, understanding Explanation of Benefits (EOB) statements, and determining eligibility for assistance programs.

Factor Solutions case specialists, including Spanish-speaking specialists, are specially trained and understand the unique needs of the hemophilia A community. Contact them at 1-800-288-8374 for more information.

From Pfizer: There is now a 3000 IU dose of BeneFIX available for hemophilia B patients. Pfizer Hemophilia is the first to offer this new dosage strength for hemophilia B patients. Higher doses may reduce the number of vials needed per infusion, save space at a patient’s home or on the go and, may have less waste for disposal. Learn more at www.benefix.com.

I’ll try to provide other product changes and improvements as they come in!

Great Book I Just Read
Kidnapped by Robert Louis Stevenson (Kindle version)

This is one of my favorite books from childhood. What a joy to read this historical fiction classic again, and on my Kindle! It’s 1752, Scotland, and following his father’s death, young David Balfour heads out with a letter of introduction to meet his uncle Ebenezer at the House of Shaw, which he imagines to be a great estate. Hoping for wealth and a new beginning, he instead meets a miserly old man and crumbling mansion. David soon learns that there are many secrets at Shaws, and when he tries to find out the true owner of the estate, his uncle tricks him into town, and then lures him onto a ship, where he is kidnapped to be an indentured servant in America. Rounding the north of Scotland one night, the ship crashes into another: the crew picks up a mysterious man in French dress with a thick money belt, real-life historical figure Alan Breck Stewart, a Jacobite. David overhears the captain plotting to kill Alan, and tells Alan. Together David and Alan fight off the crew of the ship, which then crashes and sinks. David survives, and wanders for days alone in the Highlands, before finding help and eventually is reunited with Alan. When they are both framed for the real-life death of Colin Roy Campbell, they flee into the Highlands and endure great suffering and starvation as they try to reach Edinburgh, for Alan wants to help David get his inheritance back, and David wants to help Alan return safely to France. The book is crackling with adventure, with great dialogue and unforgettable characters. The story will tell you about the politics and history of Scotland in the 1700s. Interesting to read, due to the Scottish dialect and strange words–making the Kindle or iPad invaluable as you can easily click on each word’s meaning. The 1960 Disney movie is faithful to the book, staring Peter Finch as Alan Breck, and wonderfully done. Five/five stars.

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