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 Baxalta!

When does a company change its name, especially when it’s got a good thing going on? 

We’ve seen change in our bleeding disorder community when one company buys another—called an acquisition. Some of the factor manufacturers have been acquired through the years, sometimes with a name change: can you think of any? Specialty pharmacies have seen a fast and furious amount of consolidation: your speciality pharmacy may have been one of them. It’s been going on for over 10 years now. So fast and often, you may have missed a few!
But when the biggest factor manufacturer changes its name, that’s worthy of a blog. And it’s not from aquisition—it hasn’t been bought. Baxter Healthcare International, as part of its strategic planning, has now become two separate companies. The company has long been a leader in hospital supplies—like dialysis equipment, IV pumps and solutions, and biologics—like factor. Baxter’s BioSciences division is where its factor products are made.
So Baxter has spun off the BioSciences division, which is now a completely separate company. Headquarters will remain in the Chicago area, but its R&D division will move to Cambridge, Massachusetts, about 30 minutes from my house, in fact! Cambridge is the center of the biotech universe. 
The new company is called Baxalta, a combination of the familiar name Baxter and “alta” which in Latin means “high” or “above.”
As a consumer, you’ll see eventually new packaging and a new name. But I think most of the people you know at Baxalta, like your local rep, will stay the same for now. 
Please check out the new website, and get to know Baxalta!

This post and images are sponsored by Baxalta 

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Great Book I Just Read

Dr. Mutter’s Marvels: A True Tale of Intrigue and Innovation at the Dawn of Modern Medicine [Kindle]

by Cristin O’Keefe Aptowicz

An intriguing, ethical, compassionate physician and brilliant surgeon, who introduced plastic surgery to the US from Paris, Dr. Thomas Dent Mutter seemed destined to make history. Orphaned at an early age, impoverished, he nonetheless rose the ranks in the difficult and often snobbish Philadelphia medical community, becoming beloved by students and patients for his expertise as well as compassionate treatment of patients. At a time when the best surgeon was often the fastest (there was no anesthesia for a long time!), Mutter was highly regarded, especially for treating cases of “monsters,” those people scarred by horrific accidents, or having deformities. He dedicated his life especially to those deformed by disease, birth or accident, and his contributions are now in the macabre but utterly fascinating Mutter Museum in Philadelphia. I’ve been there and was amazed! It’s a legacy for a man who is admirable for his contributions, dedication and ethical manners. I couldn’t put this book down! Five/five stars.

Navigate Hemophilia with Nava!!

Here’s a great program offered by Baxter Healthcare Corporation.
Baxter’s “Nava” offers patients with hemophilia personalized support. Nava is a website available 24/7, with a Call Center/Live Chat available for more personal assistance. Nava offers:
·       Personalized support program that gives you personalized tools and resources to help you successfully manage school, career, family and other life situations. 
o    Connects you with insurance experts to help you navigate the maze of coverage issues. 
o    Connects you with mentors who can offer support and real understanding as someone who’s walked in your shoes. 
o    Schedules one-on-one coaching to help you set and achieve your life goals – career, education, relationships, a healthy lifestyle and more!

·       Open and free to anyone within the bleeding conditions community regardless of treatment

o    People with bleeding conditions
o    Parents of children with bleeding conditions
o    Supporters or other family members
o    Healthcare professionals

For more info:   nava.baxter.com

This announcement is a public service, sponsored by Baxter Healthcare Corporation.



Great Book I Just Read

The Worst Hard Time: The Untold Story of Those Who Survived the Great American Dust Bowl [Kindle]
Timothy Egan

The sobering story of the settling of the American prairies in the late 1890s, with the encouragement of government, and consequent stripping of the land by overfarming. The overfarming destroyed the trees and ground cover that would have protected from dust storms. In time, parts of Kansas, Texas, Oklahoma and Nebraska were called the Dust Bowl as enormous walls of dust, thick enough to braise skin, barrelled down on inhabitants for years. Fine, powdery dust infiltrated every item in its path. Babies slept in filthy cribs, covered with dust. Cattle died as their bellies filled with dirt; children died, some before turning one from “dust pneumonia.” Crops failed, careers destroyed. The book chronicles several personal stories, and also reviews the government attempts to restore the land through Roosevelt’s New Deal. Be prepared to be staggered by the suffering, the history, the beautiful writing style, and learn deeply about a sad time in our country’s history. Four/five stars

Check the Pulse in Illinois!

L to R: Zoraida, Michelle, Laurie, Kelly, Elizabeth
Chicago, Illinois was the location of
our first Pulse on the Road in 2015. The
Bleeding Disorders Alliance Illinois
was our gracious host for this
day-long event, attended by 70 families.
Laurie with Audrey Taylor, 2002
It was a joyous day to be alive and together
after two tragedies had just struck: Illinois suffered about 14 tornadoes the
day before, which leveled the town of Fairdale, causing two deaths. The
community also lost the beloved Audrey Taylor, a sassy and compassionate nurse
at Rush University Hospital, one of the main hemophilia treatment centers.
Audrey was a great colleague who I always loved seeing and her death at age 51
is just devastating for all.
Our guest speakers included: the
fabulous Michelle Rice, vice president, Public Policy and Stakeholder
Relations, National Hemophilia Foundation; Kelly
Gonzalez
, a Nevada woman with von Willebrand disease, teacher, and now
advocate; Elizabeth Stoltz, senior manager, Market Access, Baxter Healthcare; and Laurie Kelley, yours truly!
Mona and Bob of BDAI, with Laurie Kelley
Executive director Bob Robinson welcome
everyone and introduced POTR, and me. I presented “Where We Were, Where We Are
and How We Got Here” to explain why the Affordable Care Act (ACA) come into
being, and how hemophilia fits in. With a few stats, I showed that skyrocketing
medical costs, particularly in specialty drugs (which factor is), was straining
state budgets; it was only a matter of time before private insurers caught on.
Looking to cut costs, insurers turned to increasing prior authorizations,
formularies, decreasing choice of factor provider, and more. As payers scramble
to cut costs and states try to cut their bloated budgets, the bleeding
disorders community is facing more and more restriction to access to medical
care and factor.
Michelle Rice, VP at NHF
Laurie and Zoraida with the DePaz Family
Enter Michelle, who explained in much greater depth how
this was happening, and gave great examples of where this was happening in our
country. After lunch, Kelly gave a lively and impassioned chronology how she became an advocate, to get access to medical care and the right factor brand for her
daughter Jacey, who accompanied her to this meeting. It was an incredible story that took 30
minutes, and left the audience in tears! But Kelly triumphed, and became a role
model for other parents fighting for access to care for their families.
Genny Moore earned $20 with our Q&A!
We tried
something new! Role playing! With Michelle acting as an insurance rep, we had
two volunteers come to the stage and act as patients, calling their insurer to
find out about 1) whether factor was covered, and 2) if their HTC was covered
under the plan. Theresa and Chrystal did a great job asking questions and not
accepting Michelle’s runaround answers. The audience got to weigh in an offer
what they thought the ladies did well and what they might have done
differently.
Finally, Community Forum, where our panel of experts field questions from the audience
on any subject, from their personal healthcare situation to state issues to
national affairs in insurance. We had some great questions and responses.
Amigas!
Thanks Zoraida Rosado, who planned our
trip so well, set up displays, tables and handouts, and dissembled everything;
to Michelle and Kelly for sharing their expertise and their weekend; and to Bob
and his BDAI team, to the Spanish translators, and to Baxter Healthcare, for providing the funding for all
the Pulse on the Roads, now in our 7th year!
Please
check www.kelleycom.com by December to see where we will be in 2015!
Good
Book I Just Read
Metallica:
Justice for All
[Kindle]
Joel
McIver
Metallica
is one of the best selling bands in history, and is often said to have defined “thrash”
metal. This is a look at their origins, spectacular rise, wayward path, and an in-depth look
at every song and every album. Probably a book for fans only, and not the best
book on rock I’ve ever read. The book gets terribly bogged down in detail, as
though it’s a ledger, schedule or chronology. Is it essential to know every city the band visited on every single tour? (It’s exhausting to
read! How did they travel so much and so often?) Much of the information is
gleaned from interviews appearing in magazines, and then pulled together to
weave some kind of story. There are layers of information missing, such as the
drug and alcohol binges throughout the band’s career, which McIver seems to
gloss over. Incredible detail on every song, how it compares to others in each album, with
McIver voicing his opinion on each song. Some of this is interesting, but you
lose the focus of the book and get sidetracked. I’m a huge fan of Metallica,
but found this book a bit tough to get through. Choppy writing, too much detail
here, not enough there. Three/five stars.

Baxter Sponsors 2015 Education Advantage Scholarships

So good health is probably the best thing in the world; when you are overall healthy, even having hemophilia, you can handle life so much better. 
The second best thing? An education! Below is an announcement about a way to help you get your education, from Baxter Healthcare Corporation.
_____________________________________________________________________
For the sixth consecutive year, Baxter Healthcare
Corporation is sponsoring the Education
Advantage
scholarship program to help eligible members of the hemophilia
community offset the costs of higher education, advance their careers, and
pursue their dreams.
The scholarship program is open to people with
hemophilia A or B (factor VIII or IX deficiency), including those with
inhibitors (factor VIII or IX deficiency), regardless of which brand of factor
treatment they use.
The program provides financial aid for a wide
variety of educational options, including four-year bachelor’s degrees,
associate’s degrees, technical/vocational certifications, as well as the GED
Test. Scholarships will be awarded up to:
·       College/University
– $7,000 renewable for up the three additional years
·       Community
College/Technical School: $1,000 – renewable up to one additional year
·       GED: $150
(one time only)

To date, 211 scholarships that include 113 renewals have been awarded, totaling
more than
$1.1 million. The Education Advantage
program is supported financially by Baxter and administered by Scholarship
America, the nation’s leading independent scholarship program
administrator.  Scholarship America
reviews all scholarship applications, determines eligibility, and selects the
scholarship recipients. Baxter has no input into the selection of recipients
Education
Advantage
scholarship program applications are available as at https://www.scholarsapply.org/baxteredge,
or by calling Scholarship America at 877-544-3018, or by emailing baxter@scholarshipamerica.org.

Applicants can apply online, download the application and mail it in, or
request a paper application. 
Completed applications for scholarship renewals are due to Scholarship
America by February 15, 2015, while the deadline for new applications is April
15, 2015.


To get started now, or for more information on the Education Advantage scholarship program,
including eligibility requirements, visit www.scholarshipamerica.org/baxteredge,
call Scholarship America at
877-544-3018, or send an email to baxter@scholarshipamerica.org.
Visit www.nava.baxter.com
to read about previous recipients of Education
Advantage
scholarships and receive tips about preparing for college.
Nava.baxter.com also highlights other resources offered by Baxter to help
patients advance their lives, focusing on career development, health
management, and community involvement.

Baxter is a registered trademark of Baxter International Inc.  USBS/MG1/14-0980   January
2015 

This blog was sponsored by Baxter Healthcare Corporation.

Excellent Book I Just Read

Alone on the Ice: The Greatest Survival Story in the History of Exploration [Kindle]
by David Roberts

Incredible true story of Australian Douglas Mawson, who led the Australian Antarctic Expedition from 1911-1913, during the so-called Heroic Age of Antarctic Expedition. Leading one group of three that set out to measure and scientifically observe new territory in the Antarctic, Mawson lost one comrade to a glacier; the other slowly and painfully died while he and Mawson tried to return to base camp. Left alone, with limited food and no dogs, in a land where the wind routinely blows at 65 mph, and the temperature is 40° below, Mawson, starving, somehow survives 31 days and single-handedly finds his way back to his waiting teammates. It is an amazing, incredible story of survival, full of suffering beyond measure, but I’d say one of the greatest story of survival in the history of exploration. Roberts takes unneccesary swipes at Lennard Bickel’s excellent book, Mawson’s Will, which helped the world outside of Australia first get to know this remarkable man and his unforgettable story. Four/five stars.

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