Groups Poised to Mark PH Awareness Month
November is Pulmonary Hypertension (PH) Awareness Month, when patients, caregivers, family members, and friends will come together virtually and in person to drive public recognition of the chronic heart and lung disease.
The Pulmonary Hypertension Association (PHA), the world’s oldest and largest organization dedicated to PH, is hosting a number of events related to PH Awareness Month.
The theme for this year is “Spark Awareness,” relating to the organization’s 30th anniversary campaign, “Lighting the Way Forward.”
“The Pulmonary Hypertension Association encourages patients, caregivers and healthcare providers to Spark Awareness for pulmonary hypertension in November,” said Matt Granato, president and CEO of the PHA, in an emailed statement to Pulmonary Hypertension News. “By sharing information about this life-threatening disease, the PH community can help others learn about symptoms, treatment, and resources to secure earlier diagnosis, appropriate care and improved quality of life.”
An interactive virtual PH Awareness Month calendar created by the PHA will guide interested individuals through various activities that can help bring more recognition to PH. It also will feature facts and resources that the PH community and the public can use to learn more about the disease.
Posting personal stories, facts about PH, and fundraisers on social media is encouraged. The PHA Awareness Month Toolkit includes profile photos for Facebook, LinkedIn, and Instagram, and sample social share text.
Downloadable fact sheets also are available to print or email to friends, family, and supporters. Customizable press releases are available for community members to reach out to their local media outlets.
The World Health Organization classifies PH into five groups, based on underlying causes and symptoms. These include pulmonary arterial hypertension (Group 1); PH due to left-sided heart disease (Group 2), the most common type; PH as a result of lung disease or chronic low oxygen (Group 3); chronic thromboembolic pulmonary hypertension (CTEPH; Group 4); and cases that don’t fit in the other four groups (Group 5).
Understanding the rare nature of CTEPH, the PHA is promoting CTEPH Awareness Day on Nov. 10. The organization has provided expert insights, social media graphics, and educational information to mark the day.
A live webinar on Nov. 16 will provide resources on left heart disease, which encompasses Group 2 patients. Registration information is available here.
During PH Awareness Month, the PHA also is focusing on fundraising. Walks and 5K runs will be replaced by the virtual O2breathe celebration at 10 a.m. CDT Nov. 6. It will last 30 minutes. If a person raises $100 prior to that day, the PHA will mail them a T-shirt as a prize.
The PHA is asking the community to educate the U.S. Congress about how PH is affecting the health system and livelihoods of those diagnosed through its Day of Action initiative on Nov. 1.
The PHA website offers written templates and a way to contact local government representatives to lobby them to update the Supplemental Security Income program, which includes expanding resources and income limits. The PHA also advocates support for the Safe Step Act, which would provide exemptions for trying less expensive medication first, passage of the Temporary Reciprocity to Ensure Access to Treatment Act, which would temporarily allow physicians to treat patients in any state during the COVID-19 pandemic, and appropriating more funding to the National Institutes of Health and Centers for Disease Control and Prevention.
Internationally, the Pulmonary Hypertension Association UK is recognizing Nov. 1–7 as PH Awareness Week. The theme for this year is “#HearOurVoices,” and initiatives include opportunities for those affected by PH to share their stories, fundraising campaigns, and tools to help spread awareness on social media and elsewhere. To kick off the week on Nov. 1, the group is holding a “pause for PH” event, in which participants are asked to be still and silent for 60 seconds to honor the PH community.
Pulmonary Hypertension News also is reviving its 30 Days of PH initiative, as it has done the past two years during awareness month. Every day in November, the website and its Instagram page will share a story from a patient, medical provider, family member, caregiver, or others affected by the disease. Those interested in sharing their story can email [email protected].
“It gives people an opportunity to put a personal face on PH and not just a medical face,” said Colleen Steele, a caregiver columnist for Pulmonary Hypertension News and lead for 30 Days of PH. “You’ll hear PH patients say a lot of times, ‘I’m more than just this disease,’ and that’s reflected a lot in the stories shared in 30 Days of PH.”