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HAPPENING HIGHLIGHTS

Mom, Community Member and Advocate
Testifies on Capitol Hill

Hemophilia Federation of America’s Director of Advocacy, Sonji Wilkes, worked
with FamiliesUSA to give a testimony on surprise billing at a hearing with the
House Committee on Energy and Commerce (Subcommittee on Health) this
summer. She was able to share her story again in September during the launch of
People Against Unfair Medical Bills, a new campaign consisting of 14 organizations
representing consumers, patients and workers.
After Wilkes's son was born, he was diagnosed with severe hemophilia following
a circumcision. While the birth was covered in-network, her family was surprised
with a $50,000 out-of-network bill for factor treatment in the NICU, which was
located just steps away from where she gave birth. She and her husband made
calls prior to the birth to ensure they were covered and made every effort to work
in network. That surprise bill resulted in debt and affected their family credit. While
Sonji is an HFA employee, her testimony was made on behalf of FamiliesUSA.

HFA Partners with ATHN for Improved Medical Records

Hemophilia Federation of America has partnered with the American Thrombosis and Hemostasis Network to offer a new
integration in HFA’s Blood Sisterhood mobile app.
The new integration allows mobile app users to share information with their hemophilia treatment center, if they wish to
do so. The app can be used to track symptoms, treatments and types and quantity of menstruation products used each
month. HTCs can use the mobile app tracking information to include in medical records for more customized treatment

and care. The app can be found in the Apple App Store or Google Play Store. S

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