Dear PHA Community,
May 5 is World PH Day, when organizations and individuals around the globe join hearts to raise awareness of pulmonary hypertension (PH), a complex, life-threatening, progressive illness that affects adults and children of all ages and nationalities worldwide.
Throughout May, beginning on World PH Day, the Pulmonary Hypertension Association (PHA) and our 86 partner PH organizations around the world will participate in a campaign to advocate for access to PH diagnosis, treatment and care. Organizations will share photos, stories and social media messages united by an image of two linked hearts, the 2018 World PH Day campaign symbol. The two-hearts logo symbolizes unity and the need for greater awareness of the disease. The mirrored hearts indicate that the health of the heart’s right ventricle is as important as the health of the left ventricle. This important detail is often overlooked in medical screenings. The image was the choice of representatives from 29 countries from Australia, Africa, Asia, Europe, Central America, North America and South America from countries as diverse as South Africa, South Korea, the Philippines, Nepal, Israel and China.
This year’s World PH Day campaign follows a precedent-setting first year of global PH organizations’ collaborative effort to extend World PH Day awareness activities beyond one day. The 2017 campaign drew a record 78,740 visitors to the WorldPHDay.org website throughout May. The site is a central virtual location that draws people from all over the world to learn about PH and global resources for people living with the disease, their loved ones, clinicians and researchers. Also during last year’s campaign, PHAssociation.org received, 261,615 visitors, nearly double the amount of traffic compared to the same period in 2016. We saw similar increases in our “About PH” and “PHCC/Find a Doctor” pages. The largest increase was in traffic to our local support group pages, which attracted 2,448 visitors, an increase of 300 percent from the prior year.
At PHA, we know that in many parts of the world people living with PH do not have access to the 14 FDA-approved treatments (one of which is approved for both adults and children) that are available in the United States. This lack of access to treatments is a major concern of PHA and our partners worldwide and is the reason we have come together to raise awareness of PH and the need for better access and care.
PH can exist alone or in association with many other conditions. In the developed world, PH is most commonly associated with left heart disease. In the underdeveloped world, schistosomiasis, caused by parasitic flatworms – also known as snail fever — is the greatest cause of PH. Other PH-associated diseases include connective tissue disorders, blood clots to the lungs, HIV, sickle cell anemia, COPD, as well as and many other conditions. PH has also been associated with methamphetamine use.
Throughout May 2018, PHA, the oldest and largest nonprofit serving the PH community – adults and children with PH, their families, caregivers and health care professionals – will share The Right Heart blog and video posts, social media messages and Facebook live events with global impact and reach. PHA will also launch a digital public service announcement (PSA) featuring Elvis Medrano, a professional boxer diagnosed three years ago with PH who was born in the Dominican Republic and is now living in the Washington, D.C. area. In addition, PHA will also use the opportunity to promote its Pulmonary Hypertension Care Center (PHCC) initiative and upcoming PHinding Your Hope International PH Conference and Scientific Sessions, June 29 to July 1, 2018, in Orlando, Florida, at the Renaissance Orlando at SeaWorld, where Medrano will be one of the featured speakers.
To participate in the 2018 global PH campaign, PHA and PH organizations around the world invite you to go to WorldPHDay.org, where our global partnership has been working together to provide campaign toolkits with logos, easily translatable social media badges, memes, social media messaging and other materials to help organizations and individuals participate on World PH Day outreach.
Thank you in advance for your participation in our May 2018 World PH Day activities and all you do to bring us closer to our vision of a world without PH – empowered by hope. As always, please feel free to share your thoughts and ideas about PHA’s programs with me at BradWongPHA@PHAssociation.org.
Brad A. Wong
President & CEO, Pulmonary Hypertension Association