World PH Day efforts seek to raise awareness of global PH impact
More than 80 groups around world will unite for a cure on May 5
The Pulmonary Hypertension Association (PHA) will join together with more than 80 organizations worldwide on May 5 for World PH Day, seeking to raise awareness of the global impact of pulmonary hypertension (PH).
This year’s theme is “United to Cure PH,” aimed at recognizing the global advances to improve the lives of people affected by PH and to find a cure for the disease. Throughout May, the participating organizations will stand up for greater access to PH diagnosis, treatment, and care.
“We’ve come a long way since the first therapies for PH were introduced over a decade ago. However, we still have not been able to address the underlying issues that cause PH,” Matt Granato, president and CEO of the PHA, said in a press release.
“There is much hope ahead though, since new therapies under development aim to stop the progression, or even reverse the damage caused by the disease,” Granato added.
Setting aside a day to come together for awareness
PH is characterized by high blood pressure in the blood vessels, called the pulmonary arteries, that supply the lungs. It affects more than 75 million people worldwide, regardless of age and ethnic background, according to the PHA. Symptoms include shortness of breath, fatigue, chest pain, and dizziness or fainting.
In the U.S., the condition is most commonly associated with left heart disease; other groups include PH due to blood clots in the lungs, pulmonary arterial hypertension, and PH due to lung disease.
PH is frequently underdiagnosed, or misdiagnosed for more common diseases, such as asthma. The average time to get an accurate PH diagnosis in the U.S. is 2-3 years, and by the time of diagnosis, 75% of patients have progressed disease. Although there is no cure, early diagnosis and appropriate treatment can improve a patient’s quality of life and life expectancy.
Throughout May, the PHA encourages the global pulmonary hypertension community to help raise awareness on social media by sharing posts using the #WorldPHDay2023 hashtag. On the World PH Day webpage, there is more information about PH and a digital toolkit with resources to participate in this year’s campaign.
The toolkit includes educational materials, Facebook and Twitter covers, and multiple social media posts. The PHA encourages people to photograph themselves with PH awareness messages, change their social media profile photos to 2023 World PH Day images, and share participating organizations’ campaign posts. Spanish and French resources also are available.
Working jointly with a common objective, a brighter future for our community is much closer.
In the U.S., the PHA will host virtual legislative visits, in which advocates will meet with legislators to request access to affordable care. That includes supporting the HELP Copays Act (H.R. 5801) to help fight high out-of-pocket insurance costs, and backing the Safe Step Act (S. 652) toward improved management policies.
Patients, caregivers, and healthcare professionals are invited to use the PHA’s email templates available at its Advocacy Action Center to write to legislators asking for access to supplemental oxygen for those in need.
Moreover, the PHA will host four in-person events in May. On May 6, the PHA Connects: PH Community Workshop will be held in San Diego, and the 2023 Detroit O2breathe Walk in Shelby Township, Michigan. Then, on May 20, there will be the 2023 Greater Washington D.C. O2breathe Walk in Alexandria, Virginia, and the DeWitt Take a Breath for PH event in DeWitt, Michigan.
“It’s truly been a global effort from industry, health care providers, organizations like PHA, caregivers, and patients around the world to advance the knowledge and science on PH. Working jointly with a common objective, a brighter future for our community is much closer,” Granato said.
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