World PH Day on May 5 to Spotlight Disease’s Global Impact
The Pulmonary Hypertension Association (PHA) will join more than 80 organizations around the world on May 5 to recognize World Pulmonary Hypertension (PH) Day.
The event is intended to raise global awareness about PH, a rare, life-threatening disease that affects more than 75 million people worldwide and for which there is no cure.
This year’s theme is “Pulmonary Hypertension Has No Borders,” a nod to the fact that PH can affect people of all ages, sexes, races, social, and ethnic backgrounds.
As part of the event, PHA will pair with the U.K.’s Pulmonary Vascular Research Institute (PVRI) to raise awareness about the lack of treatment access for PH patients around the world, particularly in impoverished or at-war countries.
“As we look ahead to World PH Day in May, it’s important to remember that such efforts are critical not only in Ukraine and surrounding countries affected by war. They also are crucial for PH communities from Afghanistan to Ethiopia, Syria and Yemen, and other parts of the world affected by war, poverty and disaster,” Matt Granato, PHA president and CEO, said in a press release.
Granato will join the MEP Lung Health Group and PHA Europe for a live panel discussion called “A Stronger European Response to Rare Diseases – The Case of Pulmonary Hypertension” on April 26 at 4:00 a.m EST (10 a.m. CET). The panel will be addressing the European Parliament and the presentation will be streamed on Facebook Live.
Efforts to raise PH awareness are underway in the U.S. On May 4 and 5, PHA members will host virtual meetings with members of Congress to advocate for current legislation related to PH.
Top-priority bills include the Safe Step Act (S. 464, H.R. 2163), which would help patients bypass some insurance company requirements to more quickly gain access to the most effective treatments, and the HELP Copays Act (H.R. 5801), which would help fight high out-of-pocket insurance costs.
Patients, caregivers, and healthcare professionals are invited to use PHA’s email template to write to legislators and encourage them to support PHA’s bills, along with a $49 billion budget increase for the National Institutes of Health. The budget increase will enable researchers to continue lifesaving PH research, PHA noted. The email template is available in PHA’s Advocacy Action Center.
Due to the ongoing COVID-19 pandemic, most of this year’s events will be virtual, but PHA will host three in-person events in May: The Puttin’ PHore Poots Fundraiser (Bloomington, Minnesota, May 7), Boston O2breathe Walk (May 21), and the DeWitt Take a Breath for PH and Get Moving for MS event (DeWitt, Michigan, May 21). Registration is open for each of these events.
Also among the worldwide celebrations is Canada’s Paint Canada Purple Campaign. Each year since 2014, the campaign has sought to light up monuments and landmarks across the country in purple to mark World PH Day. A template letter is available here for anyone wanting to request a monument be illuminated in their area.
Participants are encouraged to raise awareness of World PH Day and the Paint Canada Purple events using the hashtags #PaintCanadaPurple, #WorldPHDay and #WorldPHDay2022 on social media.