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The AARC brought respiratory therapists together with patients, families, and patient advocacy organizations at the fourth Annual Respiratory Patient Advocacy Summit held in conjunction with AARC Congress 2018 in Las Vegas last December.
“The Patient Advocacy Summit is an opportunity for patients, caregivers, respiratory therapists, and students to collaborate together to improve quality of life for individuals that experience pulmonary disorders,” said Summit Coordinator Amber Galer, BS, RRT.
With speakers from the patient/family community, along with a panel discussion featuring representatives from the ARDS Foundation, Physician-Patient Alliance for Health and Safety, Alliance for Patient Access, and Cystic Fibrosis Foundation, the Summit covered all the bases.
“The speakers and expert roundtable provided education and also shared personal and family experiences,” said Galer. “They explained how they overcame the hurdles with their diseases and the difficulties in healing.”
Well known COPD patient advocate Grace Anne Dorney Koppel, president of the Dorney Koppel Foundation, was in attendance and spoke for many attendees when she said, “It’s really a privilege to be back here, to say what a great venue this is where patients can come and hear speakers, ask questions, and be with each other.”
Valerie Chang, vice chairwoman of the U.S. COPD Coalition, echoed those sentiments, “The Summit is so exciting because it allows people to see that patients and others are still active and they want to work together, and they want to provide the richness of the voices that are involved in respiratory.”
First-hand experiences
After opening remarks, Len Geiger, who suffers from Alpha-1, got the 2018 Summit started with an impassioned talk on his experiences with the inherited lung condition. After undergoing a double lung transplant, he began working with the parents of the 14-year-old girl who became his donor after committing suicide to raise awareness of suicide prevention, organ donation, and Alpha-1.
Geiger urged attendees to consider Alpha-1 testing for themselves and their loved ones. “Everybody in this room, unless you’ve been tested for Alpha-1, you’re at risk of having it,” he said. “If you have COPD and your doctor has not tested you for Alpha-1, there are guidelines that say you should be tested.”
Steve Van Wormer, who has a young son with pulmonary hypertension, choked up while sharing the long and winding journey his family had to take to get a correct diagnosis, then offered a ray of hope when he talked about the new combination therapy four-year-old Lucas is now receiving at UCLA.
“Literally within a day, two days, it was instantaneous, having a different child,” said Van Wormer, who is working with PHAWARE.GLOBAL to raise awareness about pulmonary hypertension and the treatments available for it.
2018 Patient Advocacy Award
The 2018 National Respiratory Patient Advocacy Award was presented during the session too and went to Tonya Loftin for the advocacy she has provided to patients with complex respiratory needs in the outpatient setting. (Read More About Loftin )
Sharman Lamka, president and founder of The FACES Foundation, which co-sponsors the award along with the AARC, said the award reflects the three things everyone needs to unite pulmonary health. “That’s your pulmonary therapist working with your medical team and working with the patient and the family members,” she said. “This is all about teamwork.”
Loftin said she was thrilled to receive the recognition.
“It was a big deal. I cried when they told me and was very excited,” said Loftin, the director of population health outcomes for Eventa, LLC.
Advocacy groups show commitment
The Summit ended with the panel discussion, and comments from the four advocacy organization representatives who joined AARC Chief Business Officer Timothy Myers, MBA, RRT, RRT-NPS, FAARC, up on stage to illustrate the level of commitment they all have to further the needs of patients and families.
Said Susan Hepworth, from the Alliance for Patient Access, “We try to bring together physicians who help inform good policy making, ensuring that whatever policies are made, whether that’s at the health plan level, the regulatory level, that patients are able to access whatever it is that their physician believes is the best course of treatment for them.”
David Elin, director of policy and advocacy at the Cystic Fibrosis Foundation, stressed the need for patients to speak up to their legislators.
“It’s really important that patients share their stories with their lawmakers so that they have a better perspective when they’re crafting public policy that’s meant to protect or help people in their districts,” he said.
Patient access was top of mind for Michael Wong, founder of the Physician-Patient Alliance for Health & Safety. “We’ve found that’s an issue that faces physicians trying to get new medications to their patients, as well as patients trying to get the right medications,” he said.
ARDS Foundation President Eileen Reuben advocated for more events like the Summit to ensure more patients and families receive the information they need to manage their conditions.
“There’s not enough events like this that are geared toward giving this information to patients and empowering them and making them better advocates for themselves,” she said.
RTs find great information too
Galer believes the Summit not only provided education for patients and caregivers but also helped to bring the RTs in attendance up to speed on the family-centered care and unified teamwork needed in their daily routines with patients as well.
RT students who came to the session walked away with a greater appreciation for what patients and caregivers go through and were motivated to get involved now, even before they become full-fledged RTs.
“Attendees were urged to network and stay connected for support from respiratory therapists and caregivers within social media platforms, and share their own stories,” said Galer.
The 2018 AARC Respiratory Patient Advocacy Summit was made possible by the generous support of the respiratory care community. Our Platinum Sponsor was Boehringer Ingelheim. Sunovion served as our Gold Sponsor and Gilead, GSK, and Genentech served as our Silver Sponsors. Contributing Sponsors were Vertex, Actelion, and the PIMA Medical Institute.
The 2019 Summit will take place in conjunction with AARC Congress 2019 in New Orleans this Nov. 9-12. Make plans now to come in a day early for the meeting and attend – and ask your patients and their caregivers to consider coming to the session as well.
Email newsroom@aarc.org with questions or comments, we’d love to hear from you.
Heather Willden is the Director of Governance and Strategic Initiatives for the AARC where she works with state affiliates as the HOD liaison. She also manages DEI efforts and strategic initiatives. Connect with her about these topics by email, AARConnect or LinkedIn. When she's not working, you can find her podcasting with her husband, exploring new hiking trails, photographing, and spending time with her family.
