Name Game, Game Change?

I’m thinking “game” this weekend because the Patriots are in the Super Bowl, again, and I will need to watch it like the rest of Boston. I only watched my first football game two years ago when, surprise surprise, the Patriots were in the Super Bowl. Every sports fan knows the Patriots, I am told. It’s easy to cheer for your home teams when the names (Red Sox, Patriots, Bruins, Celtics) endure for decades. It’s harder when it’s the drug companies that make your factor concentrate. There’s a lot of game changing going on lately.

The news was announced just three days ago: Biogen, maker of Eloctate and Alprolix, has spun off its hemophilia division, which has now become an entirely separate and new company called Bioverativ.

Biogen’s two revolutionary products, the first ones with a longer half-life, were game changers. Now there are a few more choices for longer half-life products, but these were the first and were rolled out with much fanfare. Then boom! Three years later, Biogen doesn’t want them anymore.

This is just a reminder to us patients that this is a marketplace, and we are consumers. And companies need to make business decisions—hence the “game.” As consumers, it’s up to us to understand how the game is played, and who are the players. The names have been changing, more rapidly than I can keep up with in the specialty pharmacy arena, and those are truly game changers.

In the factor concentrate manufacturing arena, we had two name changes just in the last few months: Biogen to Bioverativ, and Baxalta to Shire. But this has been happening for years in our community, so here’s a review. It’s worth knowing the players—of which YOU, the consumer, are the most important!

Remember Alpha? Those of you who use Alphanate or Alphanine may wonder why these drugs are called that when sold by the Spanish company Grifols. Simple: Grifols bought Alpha Therapeutics hemophilia therapies years ago and simply kept the drugs’ names the same. (It’s hard to change a drug’s name.) In 2011, Grifols also bought Talecris, making it the third-largest global manufacturer of plasma-derived therapies. Oh, and Talecris? It was a spin-off from Bayer, which didn’t want to keep plasma-therapies anymore. Bayer’s plasma-product Koate-DVI went to Talecris, and Bayer kept Kogenate FS. If you look at the Koate-DVI packaging, you’ll still see the Bayer primary color line around the box!

Baxter Healthcare produced factor concentrates like Recombinate, Advate, Hemofil M and FEIBA. It spun off its hemophilia division, which became an independent company called Baxalta. That didn’t last long. Shire, an Irish pharmaceutical company, liked what it saw and scooped it up. All the former Baxter/Baxalta products now belong to Shire.

The biggest name changer is CSL Behring. I knew it in 1987 as Armour Pharmaceutical. Then in 1996, Armour and Behringwerke (a Geman company) formed a joint venture known as Centeon. Things happen fast: in 1999, Centeon became Aventis Behring. Why? Armour’s parent companies (Rhone-Polenc Rorer and Hoechst) merged to become Aventis. Meanwhile, CSL (an Australian plasma therapies manufacturer) acquired ZLB Blood Transfusion Services. In 2004, CSL acquired Aventis Behring, to form ZLB Behring, later called CSL Behring.

(There’s a comprehensive timeline of this interesting company here.)

Genetics Institute: anyone remember that? They developed BeneFIX and ReFacto (no longer on the market). It evolved into Wyeth, and then was bought by pharma giant Pfizer Inc.

Bayer is one that seems to have stayed the same, but it’s had name changes too. Bayer bought Cutter Labs in 1978 and Miles Labs in 1979. In 1995, they all became Bayer. I think Novo Nordisk (Denmark) has stayed the same… so far!
And some companies dropped out altogether, like the American Red Cross.  And new ones entered, like Octapharma (Switzerland) and Kedrion (Italy), tapped to distribute Koate DVI for Grifols. And Aptevo Therapeutics… oh, which was owned by Cangene (Canada) first, then Cangene was bought by Emergent Biosolutions in 2014! And they all originated from Inspirational Biopharmaceuticals, which in 2013 sold all its product rights to them, and dropped out of the game.

More passes than Tom Brady!

Whew! It’s amazing tracking the history of just the name changes: but we also need to know products. We are tracking who makes what on our website Hemophilia Factor Chart by Brand, available as a download. We are updating it all the time… a necessity to keep track of this ever-changing game, and business.

Introducing Pfizer Hemophilia Patient Affairs Liaisons

I always like to highlight new tools and resources for our community. Sometimes it seems overwhelming when you consider all the programs available! In this week’s blog I share a way to take better advantage of resources, available from one group. Please read about the new Patient Affairs Liaison from Pfizer! 

Pfizer understands that living with hemophilia is a unique journey and a growing process. That’s why Pfizer has established a group dedicated to providing meaningful support to local community groups, patients, and caregivers. The Patient Affairs Liaison role was created to help connect you with helpful Pfizer tools and resources. 

What can a Patient Affairs Liaison do for you? 

  • Provide helpful information about Pfizer Hemophilia programs and services 
  • Serve as a resource to hemophilia treatment centers to help patients
    obtain access to Pfizer medicines 
  • Serve as a Pfizer hemophilia primary point-of-contact for local advocacy groups 
  • Participate in local and national events and programs 
  • Meet with you to answer questions related to Pfizer Hemophilia resources 

Contact your Patient Affairs Liaison today! A Pfizer Hemophilia Connect representative will be able to put you in touch with your local PAL. Call Pfizer Hemophilia Connect at 1.844.989.HEMO (4366) Monday through Friday from 8:00 AM to 8:00 PM ET.

The content of this post is provided and sponsored by Pfizer.                                                                                           PP-HEM-USA-0633-01

Pfizer Hemophilia Connect: New Resources, Better Accessibility

Part of my work providing educational resources for the last 25 years to the bleeding disorder community is to remind families from time to time of the many great offerings that help us cope with a chronic disorder. I encourage you to read the below to learn more about what Pfizer has to offer the hemophilia community.

New Resources – For over 19 years, Pfizer has been a part of the hemophilia community. Pfizer understands the challenges that come with living with a bleeding disorder, and we are committed to helping improve patient lives and the lives of their caregivers. Now, a group of Pfizer Hemophilia employees is dedicated solely to providing support to the community: the Pfizer Patient Affairs Liaison. Your Pfizer Patient Affairs Liaison is available to help patients and caregivers access the support and information they need from Pfizer. 
Better Accessibility – Pfizer Hemophilia Connect, a one-stop destination designed to provide easy access to all of Pfizer’s hemophilia tools and programs. The Pfizer Hemophilia Connect support team is dedicated to working with patients, their caregivers, and healthcare providers or pharmacies to connect them to helpful Pfizer tools and programs based on their individual needs. 

Pfizer Hemophilia Connect can be reached Monday through Friday from 8:00 AM to 8:00 PM ET.
The content of this post is provided and sponsored by Pfizer.

New for 2016: Pfizer’s Factor Savings Card Program Increases to $12,000

Good news if you struggle with copays and coinsurance!
In 2016, Pfizer made enhancements to the Hemophilia Factor Savings
Card Program to better align with the needs of their hemophilia patients. This
program has increased the maximum benefit for copay and coinsurance assistance
up to $12,000 for eligible patients on Pfizer Factor products.*
Requirements Include:

No financial eligibility requirements
·       Available
to privately insured patients or uninsure
       But please see website for full terms and conditions.
· (resources
and support)
*Terms and conditions apply. This card will
be accepted only at participating pharmacies. This card is not health
insurance. No membership fees.
You will receive a total benefit of $12,000
per calendar year, or the amount of your co-pay over one year less a patient financial
responsibility of $10 per month, whichever is less.
If you have any questions about the use of this
Pfizer Factor Savings Card, please call 1-888-240-9040 or send questions to:
Pfizer Factor Savings Program, 6501 Weston Parkway, Suite 370, Cary, NC 27513.
For more information, please visit
The content of this post is
provided and sponsored by Pfizer.

Pfizer’s New Video Series Can Help You Have More Constructive Conversations

Dawm Rotellini of the NHF introduces Constructive
Conversations Video

Have you ever had a difficult discussion about your or your
loved one’s hemophilia? Have you gotten into a heated dialogue about
restrictions? Do you wish you had some strategies to have more productive
interactions with your physician or hemophilia treatment

Effective communication can play a large role in
successfully managing hemophilia, navigating difficult discussions during times
of transition and building strong relationships between patients, caregivers
and healthcare teams. 
A new educational video series from Pfizer Hemophilia
called Constructive
aims to provide the community with tools and resources to
encourage more caring, constructive, and effective conversations among those
impacted by hemophilia.
Originally introduced by Pfizer at the NHF annual meeting,
the Constructive Conversations video series allows you to review tips on
communicating more effectively in the comfort of your home. The videos portray
real-life scenarios that you may face, and show you how to construct a
conversation differently to help achieve a better outcome. Each video uses two
different approaches: one conversation using a more commanding style also known
as a “directive” approach and the other conversation using a more caring,
enquiring style also known as a “constructive” approach.
Visit today to watch the videos
and sharpen your communication skills! 
And check out Our Hemophilia
on Facebook to learn about Pfizer offerings.
The content of this post is provided and sponsored by

Good Book I Just Read

The New Single
Tamsen Fadal 

My teammate Zoraida bought this for me as a present. An easy read, snappy and filled with good advice, Emmy award-winning TV

producer  Fadal assesses her life pre-and post-divorce and what she has learned. While mostly geared, I think, for someone new to self-assessment, probably for the 20-30 year old crowd (sad to think they would be divorced then!) as some concepts are really obvious (eat well, get enough sleep) it’s still a great reminder on how to be yourself, care for yoruself, develop yourself and not lose your self in a relationship. Women try way too hard to please, sacrifice a lot in the name of relationship, and maybe that needs to change? Two/five stars.

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