Page 16 - HFA_Dateline_2014_Q2_Summer
P. 16
2000s 2000 to 2005
The hemophilia community sees
The divide in the hemo- a resurgence in families coming
philia community between together through camps, local, and
the HIV/AIDS-era fami- national meetings. The term “hemo-
lies, post-heat treated, and philia” begins to be replaced by the
recombinant factor using term “bleeding disorders” to ac- 2006
families slowly begins to knowledge all bleeding conditions. Since clotting factor
heal. The inancial burden Treatment costs continue to rank was discovered in
among the most expensive chronic
of living with hemophilia conditions. This financial impact the 1960s, inhibitors
is felt in lifetime caps and continues to burden families. have been of concern.
out-of-pocket expenses. In About 30% of
2007, the Joint Outcome The divide in the hemophilia Hemophilia A and
Study is released showing community begins to heal after 2-3% of Hemophilia B
that prophylactic treatment the passage of the patients will form an
is favorable to on-demand Ricky Ray Hemophilia inhibitor. Education
treatment in reducing joint Relief Act. and outreach
and life threatening bleed- increases for
ing. Increased attention is inhibitor families.
being paid to women with 2000 to 2005 2006 2007
bleeding disorders, and the
development of inhibitors
in hemophilia. The passage 2007
of the Affordable Care Act Dr. Marilyn Manco-Johnson, et al., publish in the New
in 2010 assures those liv- England Journal of Medicine, a multi-year study showing a
ing with bleeding disorders prophylactic regimen of treatment prevents joint damage
cannot be denied for pre- in pediatric patients.
existing conditions and
that most plans eliminate
lifetime cap issues. Future
treatment includes the
development of new clot-
ting medications and gene
therapy. Quality of life is
dramatically improved for
most living with hemo-
philia and life expectancy
is nearly the same as most
healthy people.
16 Dateline Federation | Summer 2014
The hemophilia community sees
The divide in the hemo- a resurgence in families coming
philia community between together through camps, local, and
the HIV/AIDS-era fami- national meetings. The term “hemo-
lies, post-heat treated, and philia” begins to be replaced by the
recombinant factor using term “bleeding disorders” to ac- 2006
families slowly begins to knowledge all bleeding conditions. Since clotting factor
heal. The inancial burden Treatment costs continue to rank was discovered in
among the most expensive chronic
of living with hemophilia conditions. This financial impact the 1960s, inhibitors
is felt in lifetime caps and continues to burden families. have been of concern.
out-of-pocket expenses. In About 30% of
2007, the Joint Outcome The divide in the hemophilia Hemophilia A and
Study is released showing community begins to heal after 2-3% of Hemophilia B
that prophylactic treatment the passage of the patients will form an
is favorable to on-demand Ricky Ray Hemophilia inhibitor. Education
treatment in reducing joint Relief Act. and outreach
and life threatening bleed- increases for
ing. Increased attention is inhibitor families.
being paid to women with 2000 to 2005 2006 2007
bleeding disorders, and the
development of inhibitors
in hemophilia. The passage 2007
of the Affordable Care Act Dr. Marilyn Manco-Johnson, et al., publish in the New
in 2010 assures those liv- England Journal of Medicine, a multi-year study showing a
ing with bleeding disorders prophylactic regimen of treatment prevents joint damage
cannot be denied for pre- in pediatric patients.
existing conditions and
that most plans eliminate
lifetime cap issues. Future
treatment includes the
development of new clot-
ting medications and gene
therapy. Quality of life is
dramatically improved for
most living with hemo-
philia and life expectancy
is nearly the same as most
healthy people.
16 Dateline Federation | Summer 2014
