Building relationships and advancing respiratory care were the key goals of the second annual Respiratory Patient Advocacy Summit that took place just prior to AARC Congress 2016 in San Antonio this past October.
Respiratory therapists from the AARC gathered with patients and caregivers to talk about key issues of concern and learn directly from patients and their families what they need to better manage their chronic lung conditions.
AARC Executive Director Thomas Kallstrom, MBA, RRT, FAARC, set the tone for the session in his opening remarks. “This is a great way for us to talk to you, the patients and the clinicians, to find out how we can fully advocate for you better.”
Top five issues
The meeting began with a moving talk by Tonya Winders, president and CEO of the Allergy & Asthma Network. A cancer survivor and mother of five – four of whom suffer from breathing difficulties – Winders cited a recent survey taken among patients and families that found the top five issues of concern are out of pocket costs related to care and treatment, limited time spent with physicians, knowledge about the illness and how to treat it, and feeling overwhelmed by the disease.
As a mother with kids who sometimes struggle to breath, she has had firsthand experience with them all. “I know the guidelines and I know what care should be, and yet still I’ve felt that feeling of, how could this be happening to us? And how am I going to manage,” she told the audience.
Following Winder’s talk, father and daughter RRTs Mark and Kimberly Mangus took the podium to share their journey through not one but two double lung transplants Kimberly underwent for her cystic fibrosis.
Mark emphasized there was never any question as to the lengths the family would go to to support Kimberly. “As parents, you have a child, you are going to do whatever you have to,” he said. “And that’s basically what we settled on doing.”
A true fighter, Kimberly urged other people with chronic lung conditions to be fighters too. “The only other option is death, and that is not acceptable to me,” she said.
Harmonicas for Health
Country and western star Billy Dawson was on hand at the Summit as well to talk about a program for COPD patients that’s especially near and dear to his heart. Harmonicas for Health puts harmonicas in the hands of patients to help them exercise their lungs and provide a sense of camaraderie with other patients experiencing the same kind of problems.
“The H for H program – Harmonicas for Health – helps lift their spirits,” said the performer, who went on to perform a few tunes with some H for H patients in attendance.
Audience members weighed in during the event too, telling their stories and sharing their opinions. “Respiratory therapists really kind of saved my life,” said patient Laura Burns, from Austin, TX.
“I think we learn more from our patients than from anyone else,” noted Krystal Craddock, RRT-NPS, a COPD case manager at the UC Davis Medical Center in Sacramento, CA.
The Summit ended with a roundtable discussion where patients and clinicians tackled the role of advocacy in improving care for people with chronic lung disease. “Management and monitoring and education – those are the big three,” said Brooke Yeager, MSc, RRT, government relations and clinical outreach coordinator for the Center for Telehealth at the Medical University of South Carolina in Charleston.
“When you go into a battle you want to make sure you’ve got all of your army together and each part of the army knows what the other one does,” said COPD patient Bill Clark.
“And that’s why these meetings are important, because everybody has to play a part in managing the disease.”
AARC Associate Executive Director Brands Management Tim Myers, MBA, RRT-NPS, FAARC, agreed. “I think the ability to bring advocates, organizations, patients, and clinicians together that all have the same thing in their heart and the same motivation is the key to making things better.”
The Summit was sponsored by Platinum Sponsors Sunovion, Boehringer Ingelheim, and Novartis Pharmaceutical; Silver Sponsors Gilead, Mylan, and Vertex; and Contributing Sponsors Chiesi and the COPD Foundation.