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ADVOCACY PROFILE
LOUD & Advocacy is not only
confined to the borders of
CLEAR
the District of Columbia.
Patient advocates hit The Hill to share their story
By Sonji Wilkes, staff writer Share your story with your
legislators through HFA’s NEW
Legislative Action Center at
www.hemophiliafed.org/
advocacy/ at any time. With
your help, the voices of the
bleeding disorders
community voice can be
heard year-round!
Ashley from Louisana understands that prior to the Affordable Care Act
becoming law in 2010, many in the bleeding disorders faced obstacles in
obtaining insurance coverage for their bleeding disorder.
“I want to make sure people like my son continue to have access to quality
healthcare,” she said.
Hemophilia Federation of America invited Ashley,
along with a small group of other community
advocates, to participant in HFA’s fifth annual
Patient Fly-In in June. After an evening of
training, patients and their
families representing
10 different states
participated in 21
meetings with
congressional staff.
16 Dateline Federation | Summer 2018
