During the past month, the Pulmonary Hypertension Association (PHA) and members of the pulmonary hypertension (PH) community have communicated with Congress in unique ways. Hundreds of attendees at PHA’s 2018 International PH Conference and Scientific Sessions signed a petition asking Congress to fund a PH program at the Centers for Disease Control and Prevention (CDC). The proposed program would advance early diagnosis and improve the quality of care provided to people living with PH.
More recently, advocates in select congressional districts joined PHA in an “advocacy flash mob” using social media on a specific day to send a unified message to targeted members of Congress. Flash mob participants called on their members of Congress to co-sponsor H.R. 3976, a bill that would protect charitable co-pay and premium assistance for individuals for complex, costly conditions such as PH.
PHA is highlighting members’ messages at meetings on Capitol Hill. This week, PHA delivered the petition to key leaders in the House and Senate. PHA also shared personal stories from the PH community, describing the challenges people with PH have had accessing charitable assistance this year.
When it comes to advocacy, your voice matters. To join PHA’s advocacy network and for support connecting with your members of Congress, email Advocacy@PHAssociation.org. To take action now, visit www.PHAssociation.org/Advocate.
Katie Kroner, PHA senior director, advocacy and treatment access, this week delivered a petition to Rep. Katherine Clark, D-MA, and other members of Congress calling for lawmakers to fund a PH program at the Centers for Disease Control and Prevention.