Advocacy Day 2019

Your Voice Matters

Kimberly Jackson, R.N., B.S.N., likes to say she wasn’t drawn to PH; “PH was drawn to me.”

Kimberly, a member of the Pulmonary Hypertension Association Board of Trustees, began her career 27 years ago as a cardiology bedside nurse before moving to a private cardiology practice. About 10 years ago, she started working primarily with pulmonary hypertension (PH) patients and five years ago became nurse cardiovascular coordinator for Gill Heart and Vascular Institute Pulmonary Hypertension Clinic in Lexington, Kentucky.

Unlike many of her patients with coronary artery disease, there was no “fix” for those with PH. “With these patients, you know there’s not a cure. Your goal is to make their quality of life as good as you can. We’re constantly working to help them try to feel better.”

She noticed the PH community’s closeness in 2012 when she attended her first PHA PHPN Symposium. “Everyone was so kind and encouraging ... The common purpose is to take care of these patients and advocate for them. The love they have for their patients drew me. They want to make sure their patients are getting what they need, and it made me want to be a part of that.” She led an effort on the PHPN Education Committee to develop a series of worksheets for clinicians to share with their patients.

2019 PHPN Advocacy Day

Since then, her PHA involvement continues to grow. In 2017, she attended her first PHPN Advocacy Day. She returned in 2019 to share patient stories with legislative staff on Capitol Hill and discuss high health care costs for PH patients. “A lot of people don’t know much about PH. Some of the people we talked to had never heard of it. It’s really important that we educate people on that.”

“[The legislative staff] really listened and were willing to take it a step further,” she says. “But there’s a whole lot of work that still needs to be done.”