Last August, I made my first congressional visits. I was so nervous that I would forget what I wanted to say but once I started talking that changed. I was able to tell my story and talk about how important it is for PH patients to get proper care … The more of a
Tracy Espinosa of Stockton, Calif., knows first-hand the need for better diagnosis and treatment of pulmonary hypertension (PH), especially when it comes to pediatric PH. Tracy lost her husband to PH and her two daughters, Lauren and TJ, now live with the disease. In late 2018, after the devastating loss of a friend’s young
This year, Virginia and West Virginia passed legislation that requires all forms of copay assistance to count toward an individual’s deductible. Arizona passed more limited legislation that is a step in the right direction. Arizona requires copay assistance to be counted when no generic equivalent is available or when a patient has undergone step
Individuals with pulmonary hypertension (PH) and staff from the Pulmonary Hypertension Association (PHA) weighed in during a recent public meeting about living with a rare disease. The meeting was hosted by the U.S. Food and Drug Administration (FDA) and was designed to give people living with rare diseases and their family caregivers an opportunity
PHA’s advocacy action center has two new alerts that make it easy for you to speak out about legislation that impacts the PH community. Take action now with just a few clicks. National action: Wherever you live, email your U.S. representative about the life-threatening risk of step therapy requirements for PH patients. Email now.
The National Heart, Lung, and Blood Institute’s (NHLBI’s) Division of Lung Diseases celebrated its 50th anniversary April 9 with an NIH Symposium on lung research followed by a reception at the Rayburn House Office Building on Capitol Hill, Washington, D.C. The anniversary’s theme is “Celebrating 50 Years of Progress in Pulmonary Science.” Staff from
Health care professionals can register today for the Pulmonary Hypertension Association’s (PHA’s) 2019 PH Professional Network (PHPN) Symposium Sept. 5-7 in Washington, D.C., and take advantage of their proximity to Capitol Hill during Advocacy Day on Sept. 5. Nurses, respiratory therapists and physicians can advocate for their patients and their practice in facilitated, small
The U.S. Food and Drug Administration (FDA) reports that the in-person registration for their April 29 public meeting “Patient Perspectives on the Impact of Rare Diseases” is full. However, interested persons can still register to attend via webcast. In addition, the FDA invites those interested in attending in-person to join the waitlist. The FDA
National Donate Life Month continues to celebrate the capacity we all possess to give life and hope by registering to become an organ donor. Every ten minutes, someone is added to the National Transplant Registry. Depending on the availability of necessary organs, wait times for patients on the list can be anywhere from days
Dear PH Community, The last day of February — whether it is the 28th or the 29th in a leap year — is special since it is recognized internationally as Rare Disease Day. Each year, the Pulmonary Hypertension Association (PHA) is an active participant in this important global awareness campaign. Today PHA proudly partners
