Page 10 - HFA Annual Report 2014
P. 10
ADVOCATING THROUGH
N avigating an ever-changing health insurance environ- In an effort to respond efficiently to numerous advocacy
questions raised by our community, HFA created an on-line
ment is a daunting task for most people these days but
it comes with extra challenges for our community. Because “Dear Addy” column. In all, HFA responded to 21 widely-
bleeding disorders trigger persistent and recurring health applicable issues reaching more than 20,000 community
consequences, we rely heavily on health insurance plans to members. “Dear Addy” also incorporates links to valuable
help us pay for our products and care. The HFA advocacy resources on our website, helping our community become
team pays special attention to understanding and evaluat- better educated on these topics and, in turn, becoming
ing all forms of insurance coverage, both public and private. stronger advocates.
We have, for example, supported continuing Medicaid ex- Speaking of our on-line efforts, this past year HFA hosted
pansion while keeping a watchful eye on the potential out- four national advocacy webinars and provided 19 state-
comes of moving Medicaid patients in our community to based presentations.
managed care.
In June 2014, HFA advocacy took to The Hill! We hosted
We were pleased when HFA was invited to the Food and 14 community advocates from 10 states to participate in
Drug Administration (FDA) Patient-Focused Drug Devel- a “Hill Visit” to Congress in Washington, DC in support
opment meeting in Washington, DC in September 2014 to of federal bill HR1600 - The Patients’ Access to Treatment
present the patient perspective on drug development. Our Act. Simultaneously, we hosted our first “virtual Hill Visit”
Executive Director Kimberly Haugstad presented testimony in which 239 community members participated by visit-
on the critical need for the bleeding disorders community to ing our website and generating letters to their members of
have access to the widest possible variety of treatment solu- Congress in support of HR1600. In conjunction with the Hill
tions. She also stressed the vital importance of enforcing a Visits, both actual and virtual, we also hosted a reception in
rigorous testing process to ensure product safety and effi- one of the US Senate’s historic committee rooms, awarding
cacy prior to having treatments reach patients. four “Champion Awards” to congressional leaders who have
N avigating an ever-changing health insurance environ- In an effort to respond efficiently to numerous advocacy
questions raised by our community, HFA created an on-line
ment is a daunting task for most people these days but
it comes with extra challenges for our community. Because “Dear Addy” column. In all, HFA responded to 21 widely-
bleeding disorders trigger persistent and recurring health applicable issues reaching more than 20,000 community
consequences, we rely heavily on health insurance plans to members. “Dear Addy” also incorporates links to valuable
help us pay for our products and care. The HFA advocacy resources on our website, helping our community become
team pays special attention to understanding and evaluat- better educated on these topics and, in turn, becoming
ing all forms of insurance coverage, both public and private. stronger advocates.
We have, for example, supported continuing Medicaid ex- Speaking of our on-line efforts, this past year HFA hosted
pansion while keeping a watchful eye on the potential out- four national advocacy webinars and provided 19 state-
comes of moving Medicaid patients in our community to based presentations.
managed care.
In June 2014, HFA advocacy took to The Hill! We hosted
We were pleased when HFA was invited to the Food and 14 community advocates from 10 states to participate in
Drug Administration (FDA) Patient-Focused Drug Devel- a “Hill Visit” to Congress in Washington, DC in support
opment meeting in Washington, DC in September 2014 to of federal bill HR1600 - The Patients’ Access to Treatment
present the patient perspective on drug development. Our Act. Simultaneously, we hosted our first “virtual Hill Visit”
Executive Director Kimberly Haugstad presented testimony in which 239 community members participated by visit-
on the critical need for the bleeding disorders community to ing our website and generating letters to their members of
have access to the widest possible variety of treatment solu- Congress in support of HR1600. In conjunction with the Hill
tions. She also stressed the vital importance of enforcing a Visits, both actual and virtual, we also hosted a reception in
rigorous testing process to ensure product safety and effi- one of the US Senate’s historic committee rooms, awarding
cacy prior to having treatments reach patients. four “Champion Awards” to congressional leaders who have
