Page 8 - HFA Annual Report 2014
P. 8
WE ARE MIGHTY
“ We owe it to the previous generations, to ourselves, and
to our children not to forget the past.” – Anonymous, hemophilia mom
H FA was born to advocate! In the 1980s and 90s, the Factor replacement concentrates are enormously expen-
bleeding disorder community in the US faced a true sive. While the amount of product each person consumes
crisis with a blood supply that was becoming increasingly to help their blood to clot is unique to the individual, the
contaminated with human immunodeficiency virus (HIV) average cost runs about $300,000 per year. Of course this
and hepatitis C (HCV), and with public policy that lagged can increase exponentially if a hospitalization is required
behind in recognizing the dangers of this contamination. or if a person develops an inhibitor so the clotting factor
The unified voice of our community was instrumental in en- doesn’t work as well. Our community needs safe and reli-
suring the safety of our nation’s blood supply for everyone able access to blood clotting factor products, specialized
and today the blood clotting factor products in use are sig- physicians and infusion nursing care, and these essentials
nificantly safer. The need for strong community advocates are only made possible through private insurance or public
did not end with the onset of safer products, assistance programs.
however. Our advocacy work now focuses on In 2014, HFA continued to provide a vital voice for our com-
protecting those policies that positively im- munity to policymakers, in addition to offering advocacy
pact our community, as well as protect- support and resources to our community members.
ing community members from poli-
cies that pose potential harm.
“ We owe it to the previous generations, to ourselves, and
to our children not to forget the past.” – Anonymous, hemophilia mom
H FA was born to advocate! In the 1980s and 90s, the Factor replacement concentrates are enormously expen-
bleeding disorder community in the US faced a true sive. While the amount of product each person consumes
crisis with a blood supply that was becoming increasingly to help their blood to clot is unique to the individual, the
contaminated with human immunodeficiency virus (HIV) average cost runs about $300,000 per year. Of course this
and hepatitis C (HCV), and with public policy that lagged can increase exponentially if a hospitalization is required
behind in recognizing the dangers of this contamination. or if a person develops an inhibitor so the clotting factor
The unified voice of our community was instrumental in en- doesn’t work as well. Our community needs safe and reli-
suring the safety of our nation’s blood supply for everyone able access to blood clotting factor products, specialized
and today the blood clotting factor products in use are sig- physicians and infusion nursing care, and these essentials
nificantly safer. The need for strong community advocates are only made possible through private insurance or public
did not end with the onset of safer products, assistance programs.
however. Our advocacy work now focuses on In 2014, HFA continued to provide a vital voice for our com-
protecting those policies that positively im- munity to policymakers, in addition to offering advocacy
pact our community, as well as protect- support and resources to our community members.
ing community members from poli-
cies that pose potential harm.
