“Please don’t be afraid to speak your mind.”
-Jen Miller, adult with PH and first-time legislative advocate
Pulmonary Hypertension Association (PHA) advocates are taking advantage of the August congressional recess and fall election season to meet with the members of Congress in their home states to discuss pulmonary hypertension (PH). Recently, first-time advocates Mira Kruger, family member of an adult with PH and PHA staff member from Md., and Jen Miller, adult with PH from Pa., visited with their U.S. senators and representative.
Mira, whose grandmother began experiencing symptoms of PH more than fifteen years ago, joined Kerry Babylon, PHA support group leader, to visit senators Ben Cardin (D-MD) and Chris Van Hollen (D-MD). Both advocates shared personal experiences that illustrate the “new normal” that living with PH often requires. They asked their senators to take action to protect charitable assistance and support a PH program at the Centers for Disease Control and Prevention (CDC).
Jen’s goals during her visit were to explain the severity of PH, to educate her members of Congress about the importance of early detection and proper treatment for survival and to share how hard it is to live day to day with such a serious illness.
“Wednesday was my first time meeting with any kind of government official,” said Jen. “I met with Emily Haas, senior policy advisor for Rep. Conor Lamb (D-PA). Her compassion and eagerness to listen was incredibly uplifting. She truly cared, and I could feel it.
“I wanted to make it clear that I feel very lucky to have been diagnosed so young and to have such a great support system. I’m truly inspired by my fellow patients who fight this disease with families to take care of and mortgages to pay.”
Jen encourages others in the PH community to become legislative advocates. “People are more compassionate and willing to listen than you think they are, that you have a voice and important things to say, so please don’t be afraid to speak your mind. At the end of the day we are all human. Just being able to educate one person was one of the best moments of my life and I hope I can continue to fight for all of my PHenomenal friends.”
To learn more and join PHA’s volunteer advocacy network, contact gro.noitaicossAHP@ycacovdA or 301-565-3004 x749.