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What followed was a period of action in the hemophilia com- total of 18 new products released to the market from nine
munity throughout the 1990s. National grassroots associations different manufacturers. Three manufacturers—CSL Behring,
like the Hemophilia-HIV Peer Association, Committee of Ten Novo Nordisk, and Shire—were responsible for more than half
Thousand (COTT), and Hemophilia Federation of America of the products that received FDA approval during this time.
(HFA) formed to address the heretofore-unheard needs of
the community. Meanwhile, National Hemophilia Founda- The influx of products on the market came with the introduc-
tion (NHF) took responsibility for their role in the failure of tion of new manufacturers to the market as well as a number
the public health system to protect the hemophilia commu- of mergers, spinoffs, and acquisitions. Just when the commu-
nity, and joined these grassroots efforts. The gay community nity was remembering which products Baxter produced, the
became a strong ally, supporting those with hemophilia and name changed to Baxalta which was then quickly followed by
HIV/AIDS. After the 1995 release of the Institute of Medicine’s a merger with Shire. Biogen produced a spin-off now known
report, “HIV and the Blood Supply,” a legislative effort gained as Bioverativ, and Emergent BioSolutions completed a spin-off
traction, culminating in the passage of the Ricky Ray called Aptevo Therapeutics.
Hemophilia Relief Fund Act of 1998.
New companies began to enter the market and names like
As this community-based activism was taking place, the phar- Alnylam, Genentech, Spark Therapeutics, uniQure, among
maceutical industry had 11 new products approved by the FDA others, began to appear at conferences and in various com-
between 1990 and 1999. A total of 25 products were approved munity news outlets. Almost 30 new and emerging therapies
and available at the close of the 20th century, a vast difference are currently being studied by a number of companies who are
from when the first clotting factor was released in the ‘60s. With looking at treating hemophilia and other bleeding disorders in
medical and scientific advancements, the introduction of HTCs, a number of new ways.
grassroots advocacy organizations, and federal legislation, the
hemophilia community could be proud of all it had achieved. While we can’t know for sure what the future has in store for
the community, it’s fair to say that the next few decades will
In the last 17 years, the number of products on the market near- be active, medically and scientifically. The number of products
ly doubled, with 48 products currently on the market treating available on the market can’t realistically keep growing at this
hemophilia, von Willebrand Disease, rare bleeding disorders, current steep rate forever, but, at the moment at least, there are
and inhibitors. Since 2010 alone, the community has seen a no signs of it slowing down anytime soon. n n

BE INFORMED: It’s good to know the origins of the company that provides your factor. Some companies have
merged, been acquired, spun-off since 1990, or changed their names along the way.

Emergent BioSolutions > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Aptevo
Hyland > > > > > > > > > > > Baxter > > > > > > > > > > > > > Baxalta > > > > > > > > > > > > > > > > > > > > Shire
Cutter > > > > > > > > > > > > > > > > > > > > Miles Laboratories > > > > > > > > > > > > > > > > > > > > > > > Bayer
Biogen > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Bioverativ
Armour Pharmaceutical > > > > Centeon > > > > > >Aventis Behring > > > > > > ZLB Behring > > > > >CSL Behring
Alpha > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Grifols
Bayer (Plasma Div: Product-Koate) > > > > > > > > > > > > > > > > Talecris > > > > > > > > > > > > > > > > > Kedrion
Genetics Institute > > > > > > > > > > > > > > > > > > > > > > Wyeth > > > > > > > > > > > > > > > > > > > > > Pfizer

8 Dateline Federation | Special Issue Fall 2017