AARC leaders recently gathered with representatives from patient advocacy groups and patients for a patient advocacy summit on how to best address issues most important to people with chronic respiratory diseases.
“It’s important for us to be able to hear from patients what we can do to be better advocates for them,” said AARC Executive Director Thomas Kallstrom, MBA, RRT, FAARC. “At the end of the day, unless they have advocates like us, often they’re left to fend for themselves, and we want that not to happen.”
Patients come first
Sponsored in part by GlaxoSmithKline, Boehringer Ingelheim, and Sunovion, the first ever Respiratory Patient Advocacy Summit kicked off with a moving tribute to a leader in the patient advocacy community, Nick Jones, who lost his battle with COPD just a few weeks before the meeting was convened.
According to Bob Sobowiak, RRT, Jones epitomized the concept of living well with lung disease. “You can live a healthy life. You don’t have to be sitting in a little corner around your oxygen concentrator,” he said, noting a photo of Nick with his hands raised over his head in a victory stance that was shown to the group up on the big screen told the tale. “As that picture illustrated, Nick was a true champion.”
Kip Adams, who was there to represent GlaxoSmithKline, stressed the need to keep patients like Nick top of mind at all times. “It’s all about patients and how we can help patients.” His company and others like it don’t just make medications for patients, he continued, they also want to improve the lives of patients and the people who care for them.
Lectures address areas of concern
The Summit, which benefited from participation by the COPD Foundation, U.S. COPD Coalition, and Allergy & Asthma Network, went on to feature several speakers who addressed key areas of concern for patients and professionals alike.
Valerie Chang, JD, a judge in Hawaii who stepped down from the bench in 2006 and founded the Hawaii COPD Coalition in 2007, spoke to the group about her own journey with the disease. Diagnosed with severe emphysema 15 years ago, she found herself too short of breath to do many of the things she once loved.
With proper disease management, today she’s back on track, and she believes other patients can do the same. “I would like to let patients know there is a lot they can do to be more active in terms of helping to manage their health, optimize their lives, so that they can live full and active lives even with lung conditions.”
Part of the solution, she continues, is for people with COPD to think of their challenges as resources. Issues that top her mind include durable medical equipment, improper use of inhalers, access to health care, underfunding for lung care, and advocating for lung health to members of Congress.
Joseph Lewarski, BS, RRT, FAARC, discussed the importance of the patient-RT partnership in his talk, urging therapists to take their advocacy beyond the bedside by volunteering to be a subject matter expert to a patient advocacy group.
He also stressed the need for patients to speak up for themselves and ask questions of their health care providers. “There was an era when nobody would challenge a doctor, nobody would challenge anybody in a lab coat. That era is over,” said Lewarski. “It’s a team effort between the patient and the family and the physician and other clinicians. And quite frankly, doctors and other clinicians can’t do their job well if you’re not honest with them.”
The future lies in telehealth
The roundtable discussion that ended the session gave therapists, nurses, and patients alike the chance to talk about priorities for the future, including support for the Medicare Telehealth Parity Act, which would expand coverage for remote monitoring and education of chronic lung disease patients by qualified professionals, including respiratory therapists.
Sam Giordano, MBA, RRT, FAARC, urged everyone to get involved in the process. “They don’t have to fly to Washington to make a difference. We just need to tighten up our community and convey our message time and time again.”
The AARC will be out in full support of the legislation in April, said AARC Director of Legislative Affairs Kimberly Turner. “On our April 11 Hill Day we’re going to have a lot of people come up and talk to their members and put pressure on them to support this terrific piece of legislation.”
The Association also plans to do more in 2016 to equip respiratory therapists with the tools they need to better manage chronic lung disease in their patients and help them avoid hospital readmissions.
Attendees at the Summit walked away from the session inspired by what they heard and full of hope for future improvements in the care and treatment of COPD.
Said patient advocate Kerin Deitemeyer, “I thought it was awesome, I thought it was great. Any summit, any gathering that pulls together professionals and patients is wonderful because we hear what is going on, what they’re thinking of doing, what their focus is, and they learn from us what’s most important for us.”