Pulmonary hypertension advocates met May 4 and 5 with strategic legislative offices to mark World PH Day.
Advocates spoke with congressional staff about Pulmonary Hypertension Association legislative priorities. The advocates urged Congress to pass the Safe Step Act this year, support the HELP Copays Act, and approve $49 billion for the National Institutes of Health for FY 2023.
Many of PHA’s advocate groups received positive responses in their meetings and said congressional staff seemed appreciative to learn about PH directly from patients and caregivers.
Monica Penaranda, a Pulmonary Hypertension Association (PHA) board member, organized group of advocates to meet with legislative staff from the office Rep. Mark DeSaulnier (D-Calif.). DeSaulnier chairs the House Education and Labor committee, which is considering the Safe Step Act.
“I couldn’t be happier with how our meetings went,” says Monica, who also is a member of PHA’s Advocacy Committee and a support group leader.
“Speaking out to make a difference in my life and the lives of others is very empowering,” she says.
“If we speak out together, we can help our community. We have the power to make a difference.”
Nicole Hogan-Williams of Nevada said she was grateful to have participated in the virtual advocacy event.
“I just wanted to give a great big warm hug and a great big thank you to everybody who participated,” she says. “I look forward to future engagements where I can be of service to [people with] this disease and other patients who really do need the support.”
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