Patients are at the heart of the Society’s mission, and on Saturday about 200 patients and advocates met with prominent pulmonologists during the annual free ATS Public Advisory Roundtable forums “Meet the Expert” and “Breathing Better with the ATS” at the Loews Philadelphia Hotel. Lunch and oxygen refills were provided.
During “Meet the Expert,” patients discussed the latest in research, clinical trials, and clinical care with experts in sleep apnea, pulmonary fibrosis, Hermansky-Pudlak Syndrome, Alpha-1, pulmonary hypertension, lung cancer, LAM, sarcoidosis, ARDS, scleroderma, and COPD.
“It was encouraging to hear that prostacyclin is now in an oral phase,” said Patty Farrow of Paulsboro, N.J. “It would be wonderful to take a medication that’s just as strong and efficient in oral form as opposed to having a central IV line and all the side effects and problems that come along with that.”
Leslie Gamble, of Lancaster, Penn., and ARDS Foundation President Eileen Rubin, JD, met ARDS experts Giora Netzer, MD, and James Jackson, PsyD. “I came to figure out if what I’m experiencing is normal, and I learned a lot,” Mr. Gamble said.
“Breathing Better” took on the theme “Innovations in Lung Health: What’s New?” by focusing on clinical trials, patient involvement, lung transplantation, and adult immunizations. Speakers were Vivek N. Ahya, MD; Suzanne Schrandt, JD; Gail Weinmann, MD; ATS Secretary-Treasurer Atul Malhotra, MD; and Samuel B. Graitcer, MD.
“Patient-centered doesn’t mean having patients in your clinical trial or clinic,” ATS PAR Chair Teresa R. Barnes said. “What it means is having patients and patient advocates involved in the process from the inception through the end. The world is recognizing that something the ATS has been doing for a long time is what everyone should be doing.”
ATS PAR presents “The Research Funding Crisis: Finding Funding During Tough Times,” from 2 to 4:30 p.m. Tuesday in Grand Ballroom H (Level 5) Philadelphia Marriott Downtown. Speakers are Teresa R. Barnes, ATS PAR chair; James P. Kiley, PhD; John W. Walsh, MD; Wade Lange, BPharm, MS: and Nicholas S. Hill, MD.