PHA Pathlight Spring 2014 - (Page 1)

A newsletter of the Pulmonary Hypertension Association nce nfere Co w revie 14 P 20 ges on Pa 0 37-4 0 Spring 2014 0 Volume 23 No. 2 Pathlight Care Centers Persistent Voices INSIDE! Highl ights PHenomenal Lives 4 Coping with PH 6 Health Matters 11 Ask a PH Specialist 11 Helpful Hints 15 Research Corner 17 Advancing the Cause 18 Providing excellence in pulmonary hypertension care PHA-Accredited PH Care Centers Aim to Raise the Quality of Care for All PH Patients "The PH Care Centers initiative is central to making progress in the research, educational, and care-providing spheres of pulmonary hypertension." - Michael McGoon, MD Chair, PHCC Oversight Committee PHA is pleased to announce a new chapter in the diagnosis Special Events 28 and management of pulmonary Chapter Happenings 31 hypertension: the PHA-Accredited Pulmonary Hypertension Care Centers Persistent Voices 34 (PHCC) initiative. Since 2011, the PHA Scientific Leadership Council (SLC) Community Classroom 37 and a subcommittee, led by Dr. Murali Conference Preview 37 Chakinala and including more than 40 physicians, non-physician clinicians, PHenomenal Youth 41 patients and caregivers, have sought to Family PHocus 43 develop a program to identify medical centers with special expertise in treating PH. The primary goal of this program is to raise the overall quality of care and outcomes in patients with this lifethreatening disease. Support Groups 26 Pulmonary arterial hypertension (PAH) is a disease that was once considered rapidly fatal. Now, however, PAH can be treated with 12 medications. All of these medications have been developed in the last two decades, and numerous medical leaders within PHA have been involved in the advancement of therapeutic options. Despite the availability and success of PAH-targeted therapeutic options during this time, our medical leadership perceived ongoing opportunities for improvement with the diagnosis and management of this disease. At PHA, we frequently receive inquiries from cardiologists and pulmonologists who are interested in treating PH but are unsure how to organize a robust PH program correctly and efficiently. We now have a resource to provide them. In the near future, medical centers PHCC Initiative continued on page 12

Table of Contents for the Digital Edition of PHA Pathlight Spring 2014

PHenomenal Lives
Coping with PH
Health Matters
Ask a PH Specialist
Helpful Hints
Research Corner
Advancing the Cause
Support Groups
Special Events
Chapter Happenings
Persistent Voices
Community Classroom
Conference Preview
PHenomenal Youth
Family PHocus

PHA Pathlight Spring 2014