Jill Gerrie braved construction and traffic backups along her four-hour drive from Michigan to Indianapolis. Gerrie, of Leslie, Michigan, was excited to attend PHA 2024 International PH Conference and Scientific Sessions.
“This was my first real opportunity to go to a PHA conference,” said Gerrie, who was diagnosed in 2020 with pulmonary arterial hypertension after a decade of being misdiagnosed with asthma. Gerrie was thrilled to meet so many others with pulmonary hypertension or who had a connection to PH. “I saw some really great sessions.”
Gerrie was among the 1,100 people who attended the Aug. 15-18 event, which began with scientific presentations, receptions and the exhibit hall opening. Over four days, participants learned about medical advancements, gained tips for living with PH and connected with other patients and health care professionals.
“I saw some great slides by doctors explaining the different pathways,” including new pathways linked to PH, Gerrie said. Although she was really sick when she was diagnosed, she said she’s now doing so well that she doesn’t qualify for clinical trials.
“It’s been remarkable,” she said. “I use an IV pump, and it’s changed my life. I feel better than I’ve felt in over 20 years.”
Jill Gerrie
Inspirational videos
The conference began with a powerful video that celebrated the strength and unity of the PH community. Centered on the conference theme “Stronger Together,” the video featured interviews with Beverly Lipmyer, Candace Learman, Carla Kinsey and others. They shared their initial shock of diagnosis, day-to-day physical and emotional challenges, and resilience. After the video, motivational speaker Mandy Anderson shared her experience with cystic fibrosis and offered encouragement to attendees.
Our equally inspirational closing video featured interviews with PHA founders Judy and Ed Simpson; pulmonologist Greg Elliott, who was instrumental in creating the Research Room; and support group leader Gwendolyn Brown, who has lived with PH for 42 years. The video also showed PHA 2024 highlights, including education sessions, networking events and celebrations such as the Saturday night gala and fashion show.
“That conference video always gets me choked up,” incoming chair of the PHA Board of Trustees Traci Stewart confided before she accepted the gavel from outgoing chair Tony Lahnston at the closing breakfast. Stewart said she looked forward to the closing video at each conference because it’s “a snapshot of all of the wonderful things, encompassed in a minute.”
Global Voices
Among the attendees, 73 were from 22 other countries, including Canada, China, Columbia, Costa Rica, Israel, Japan, Mexico and Norway. Several participated in an international forum and reception, where they shared their experiences and discussed treatment challenges.
Noriko Murakami began attending PHA conferences in 2000 after her daughter was diagnosed and doctors said there was no way to save her life. Since then, Murakami founded PHA Japan around a kitchen table, “like in the US,” and today the country’s national insurance covers 13 PH treatments, as well as transplants and BPA surgery. Murakami continues to be active in the PH community after she and her husband donated parts of their lungs for their daughter’s transplant. Although her daughter has graduated from college, has a career and her own family, other people in Japan struggle to be accurately diagnosed.
“Japanese patients are very, very hesitant to tell their doctors … they want to go to another hospital to get a second opinion,” said Murakami, one of the speakers in the international forum. “Because the patients are too afraid of their doctors’ reaction, we must keep trying.”
Huan Huang, of Guangzhou, China, also participated in the international forum. When Huang was diagnosed in 2006 at age 23, her country had only two PAH treatments. Today, China has most PAH treatments, which are covered through the national health insurance. However, many patients are passive in their treatment plans, so their quality of life hasn’t improved as expected, said Huang, whose first PH conference was PHA 2014 in Indianapolis.
“I’m so interested in the latest developments in PH. That’s why I’m here,” said Huang, who enjoyed learning about new treatments and hearing from other patients. “US patients are very active, and they advocate for their rights in oxygen therapies.”
Advocacy priorities
PHA kicked off our August advocacy challenge at the conference. On the first day, attendees sent 400 messages to Congress in support of the Supplemental Oxygen Access Reform Act. By the end of the conference, the PH community had sent 683. Our goal is to send 800 by the end of this month – it’s not too late to add your voice.
During the conference, many advocates promoted the challenge, which asks Congress to make oxygen and related equipment more affordable and accessible for Medicare beneficiaries.
PHA board member Colleen Connor discussed “What to Know About Oxygen Access and Portable Oxygen Concentrators” in a breakout session, and Jeff Harpp, parent of an 18-year-old with PAH, addressed the benefits of advocacy in the “Caregivers Need Care Too” session.
Scientific sessions
As people with PH and caregivers attended breakout sessions related to living with PH, health care professionals attended sessions with a scientific focus. The Scientific Sessions focused on PH research, as did lightning-round presentations of research topics selected for the Poster Hall. At industry-sponsored sessions, patients and health professionals learned about state-of-the-art technology and other PH advancements.
Journeys lunch
In the Journeys Lunch, health care professionals take the stage with their patients. Each pair discussed the bonds developed over the patient’s care journey. The first pair was Melissa Magness of Cincinnati Children’s Hospital and Lottie Ahrens, accompanied by her mom Eve. Eve Ahrens spoke about the importance of her family’s confidence in Lottie’s care team, especially when Lottie faces life-or-death moments.
The second pair was Nidhy Varghese of Texas Children’s Hospital and Nick. Herrara. Herrara described living a full life as a high school student and not letting PH define him while remembering a sister who died from PH.
The third pair were Debbie Kittel, PH nursing manager at The Ohio State University and Tiffani Brown. Brown related her challenges in the right PH therapy, how PH affected her mental health, and how becoming a PHA support group leader and fundraiser has benefited her.
Fashion show
The PHA 2024 Fashion Show, emceed by Stephen Carter-Hicks and Clair Purtell, featured 12 models, including the emcees.
“You’re in for a real treat tonight as we have a fantastic group … ready to model their own fashions, from casual PH awareness outfits to evening gowns and everything in between,” said Carter-Hicks, a long-time PHA volunteer and PH activist. Patients of all ages and backgrounds showed unique ways of hiding or flaunting their medication pumps, oxygen tubing and other devices.
“What better way to celebrate all the friendships, connections and triumphs of the weekend, than with a one-of-a-kind party,” said Purtell, a member of PHA’s Indianapolis Support Group.
After the fashion show, Carter-Hicks performed a song composed for him to sing to the PHA community. The closing party followed, with a DJ, dancing, games and a dessert bar.
