PHPN: An Allied Health Professional's Experience at PHA's International Conference

I have attended several Pulmonary Hypertension Association (PHA) international conferences over the years. During that time, the PHA has grown and evolved as an organization, becoming a vital resource for the entire pulmonary hypertension (PH) community (patients/families, health care providers, and researchers). This was my ninth PHA international conference. As with previous conferences, I arrived filled with excitement for PHA's 2014 Racing Toward a Cure conference.

The scientific sessions this year focused on new treatments and targets in PH. Dr Norbert Weissmann from Germany discussed nitric oxide inhibition as a potential therapy for chronic obstructive pulmonary disease (COPD) (Group 3 PH) patients. Dr Marc Simon presented current clinical trials involving nitric oxide therapeutics in pulmonary vascular disease. Dr Steven Kawut participated in panel discussion on clinical trial design, emphasizing the importance of upholding ethical standards during the design and conduct of research in patients with PH. Dr Ioana Preston presented information on new drugs in the pipeline for PH. The latest concepts regarding active research efforts will enable all members of the PH community to offer patients hope for a cure.

The PHA conference officially opened during lunch on Friday, with all attendees gathered in the grand ballroom. I appreciated seeing the eager PH patients and their families: this was the first PHA conference for many of them. The excitement in the room was palpable during a video presentation of Dr Patty George leading her Team PHenomenal Hope as they biked across the country raising awareness and funds for PH research. I especially enjoyed seeing my patients who had traveled from Philadelphia. (I must admit: I checked them daily during the conference to ensure they were feeling okay.) The conference is also a wonderful opportunity to catch up with nurse and physician colleagues from PH centers across the country.

I led a session on Saturday titled Care for the Adult PH Caregiver, which was a panel discussion on what caregivers should know about PH as a disease process, and how to manage multiple priorities with a chronic illness. Panelists included a clinical PH nurse, social worker, and PH physician, offering the audience differing perspectives on navigating life with an ongoing condition. We presented to a full room of PH patients and caregivers—all seeking solutions for managing the difficulties of chronic illness. There was laughter as well as tears of relief as caregivers expressed their fears to a supportive audience. It was a very helpful session for many, and the audience appeared relieved to know they are not facing this challenge alone.

I particularly enjoyed hearing Dr Ray Benza present “Etiology, Diagnosis, and Management of Right Ventricular Failure in PH.” He reviewed physiologic concepts of managing acute and chronic right heart failure. Dr Stephen Matthai discussed the challenges of PH associated with connective tissue disease, and Dr Steven Kawut reviewed PH in lung disease.

My favorite session during each PHA conference is the PH fashion show. I love seeing PH patient models (men, women, and children) strut the catwalk with confidence, knowing their infusion pumps or oxygen tubes are skillfully hidden under their clothing. Debbie Castro and Lucas van Wormer served as emcees, describing the outfits and adding some humor. It is such a fun session and the audience always cheers enthusiastically. The patient models had their hair and makeup done this year, and they looked fantastic. It is wonderful to see them beam with the assurance that they can face the world as a regular person—not just a patient with an illness. I highly recommend adding this session to your PHA conference agenda in 2016.

Racing Toward a Cure was a great success. From the scientific sessions to the closing, the PHA conference offered education and support for the entire PH community. I learned about new research, targets, and therapies, and I spent meaningful time with nurse and physician colleagues. I will eagerly anticipate attending the next conference in Dallas in 2016!