A Patient’s Perspective on the Patient Advocacy Summit

 Published: September 19, 2019

By: Heather Willden


graphic with Respiratory Patient Advocacy Summit logo and event details

The AARC will convene its annual Respiratory Patient Advocacy Summit in New Orleans on Nov. 8, just prior to the start of AARC Congress 2019 on Nov. 9. Respiratory therapists and other clinicians will be in attendance to strategize with patients and patient organizations on the best way to care for people living with lung conditions.

Finding common ground

photo of valerie chang being interviewed at the 2018 Patient Advocacy Summit
Dr. Valerie Chang interviews with AARC-TV at the 2018 Patient Advocacy Summit.

Valerie Chang, JD, has been on hand for three out of the previous four Summits and she’ll be there again this year to speak to the attendees about her own battle with lung disease.

“I attend each time to network with respiratory therapists and other patient advocates and their organizations, so we can work together on common issues,” said Chang, who serves as executive director of the Hawaii COPD Coalition. “It’s such a crucial opportunity to come together and put faces to names that otherwise we only read online.”

Chang appreciates the sense of fellowship she gains with the RTs who come to the event, noting they are always ready to put patients first and advocate both with and for people with lung disease.

“At each annual event, we have discussions about patients and RTs working together so patients can have better respiratory care and quality of life,” she said. “We listen to the issues RTs are facing and they hear about the issues patients are most concerned about. This helps us all when we advocate to Congress online or in person.”

She says the connections she has been able to make with RTs and other patients during the Summit have proved to be extremely useful in her advocacy and patient education efforts in Hawaii and beyond, and she loves being in the same space with so many people who are working to improve care for everyone with lung conditions.

“It is useful for patients to be able to communicate directly with respiratory therapists and other providers so that they can hear what’s actually being said instead of having the communication filtered and modified by whomever is wanting to adjust the messages,” Chang said.

Just do it

What would she say to other people living with lung disease about why they too should come to the Summit? Valerie Chang offers this list of reasons why they should just do it:

  • Learn new information from interesting speakers: Hear different perspectives from patients, caregivers, other providers, and AARC leadership, both on and off the stage.
  • Network with RTs and patients: Start Congress off right with these great connections that you can maintain throughout the week and beyond!
  • Fellowship: Come and connect with old and new friends, providers and patients from all over in an energetic, optimistic setting.
  • Food: A delicious and healthy meal will be provided at the Summit!

Want to get a closer look at a typical Respiratory Patient Advocacy Summit? Take a few moments to watch last year’s event recap video.

Ready to register for the 2019 Summit? Check out the Summit information page.

Email newsroom@aarc.org with questions or comments, we’d love to hear from you.

Heather Willden

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.

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