By Dora Nagy, Senior Manager of Publications, PHA
The Pulmonary Hypertension Professional Network (PHPN) Advocacy Day is a biennial event — held in conjunction with the PHPN Symposium — that gives health care professionals and providers a chance to visit Capitol Hill to meet with policymakers and discuss issues of importance affecting the PH community. Denise Bagford, B.S.N., R.N., CRNI, of Tucson, Arizona, was one of 90 people who participated in the 2017 Advocacy Day.
Denise is a director of specialty nursing at CVS Health. She has been working with CVS and the PH community for the past 17 years, and she is well-versed in issues impacting people with PH. “I enjoy sharing education and awareness about PH. It’s exciting being able to support PH patients like this,” said Denise.
Although Denise has been to all previous Symposia, this was her first time attending Advocacy Day. She had signed up for two previous Advocacy Days, but was unable to attend because of work commitments. So, this year she was very excited to finally be able to attend. For the day, she was partnered with a nurse from the Mayo Clinic in Arizona, M. Cherise. Together, they visited the offices of both of Arizona’s Senators, John McCain and Jeffry Flake.
The meeting at Senator McCain’s office proved to be a highlight. The congressional staffer they met was incredibly receptive to learning about PH and was interested in getting details about the funding for the proposed PH program at the Centers for Disease Control and Prevention (CDC). Like most people, he had never heard of PH before. But, he instantly understood the nature of the disease — rare and underserved — and why it was important to educate others about it.
Denise and Cherise spoke about different aspects of living with PH. Denise focused on access to treatment issues. The congressional staffer was surprised to learn about some of the difficulties that people with PH face in getting their treatments.
Cherise spoke about the importance of early diagnosis. She shared a personal story about a 24-year-old patient of hers who was treated at the University of Arizona. This young lady was diagnosed with PH when she became pregnant with her first child. She already had PH before becoming pregnant, but didn’t know it. Her pregnancy placed undue stress on her heart and lungs, exacerbating the PH — making the symptoms worse — and negatively impacting her health.
She gave birth to a healthy, full-term baby, before she passed away 72 hours after delivery. Her parents are raising the child — a little girl — who is now 5 years old. Not long ago, the child’s grandfather, her deceased mom’s father, was diagnosed with PH. This story helped illustrate the devastating effects of this disease and the need for awareness and early diagnosis.
Denise immensely enjoyed her day on the Hill, partnering with Cherise to speak with congressional staffers about what she has learned during her 17 years of working with the PH community. She is planning to continue advocating for people with PH and is already looking forward to the next Advocacy Day in 2019. “It was perfect, a great experience. I would do it again a million times over.”
People like Denise play a vital role in advocating on behalf of the PH community. Participating in advocacy efforts are important because it helps educate lawmakers about the issues affecting their constituents and communities — issues that they often don’t know about. It is people like you — the PH community — who put a face and a personal story to the words “pulmonary hypertension.”
Anyone can advocate, and PHA is here to help you every step of the way. If you would like to join PHA’s grassroots advocacy network, email gro.noitaicossAHP@ycacovdA or call Katie Kroner at (301) 565-3004 x749. When you join this network, PHA will send you the resources you need to reach out to your elected officials a few times a year about the issues that impact your life or those of your loved ones.
You can also sign up for email action alerts that will prompt you when there is a piece of legislation being considered that could impact people with PH.
For general information about PHA’s advocacy efforts, please visit www.PHAssociation.org/Advocate