Page 8 - HFA Annual Report 2015

Year in Review | Outreach/Advocacy

Changing or Protecting Policies that Impact the Lives of
People Living with Bleeding Disorders.

dvocacy is at the heart of all we do at HFA. Our unwavering commu-
Anity-centered commitment has contributed to building trust and true
community engagement. Our practical, hands-on advocacy materials help
community members navigate the healthcare system and our support
efforts empower members to advocate, individually and collectively. Our key
issues include access and affordability to care and treatment, safety of
therapies and integrity of data collection. Some examples of specific Advocacy educational
advocacy outcomes and accomplishments in 2015 include: 19 programs delivered at
local meetings
• Assisted dozens of community members with individual support concerning
payer issues, including, but not limited to, providing written support and tes-
timony in appeals processes, and providing support and advice in obtaining Letters submitted
individual exceptions to prohibitive decisions, denials or policies. 18 to executive agencies
on issues like discriminatory
• Solicited and published personal accounts of advocacy stories of community tiering practices, biosimilars,
families in our quarterly newsletter, Dateline Federation.
and the 340B drug discount
• Created toolkits for community members to use when advocating for issues in pricing program
their state that includes issue briefs, policy updates, sample letters and talking
points in areas such as specialty tiers, biosimilars, etc. Dear Addys (Q&A on
• Supported our 43 member organizations with testimony, written letters, and 16 healthcare & insurance
coalition-building as they sought to pass legislation about the use of specialty issues) posted to HFA’s website
tiers, prior authorization, Medicaid managed care, and other coverage issues.
Meetings of Advocacy
10 Working Group
“ I advocate for the bleeding disorders community
to provide help for our families, education for people State-based
who do not know about bleeding disorders, and a 4 legislative days
better life for my son as we deal with his severe
” 4 advocacy summits
hemophilia type A. State-based coalition