American Lung Association launches campaign to raise PAH awareness
Effort aims to support families living with tough-to-diagnose disease
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The American Lung Association has launched a national campaign to raise awareness of pulmonary arterial hypertension (PAH) and support families living with the rare lung disease that often takes a long time to diagnose.
Announced during Pulmonary Hypertension Awareness Month, the campaign shares patient stories and introduces a free online class, access to a helpline staffed by nurses and other experts, and educational resources about diagnosis, treatment, and living with PAH.
“For our new PAH campaign, we spent a significant amount of time listening to the stories of people living with PAH to better understand their path from diagnosis to treatment and what it’s like to live with this chronic lung disease,” Jennifer Schroeder, manager of nationwide health promotions for the American Lung Association, told Pulmonary Hypertension News, adding that “we must raise awareness about PAH so people are diagnosed earlier and can get connected to the right treatment to help them live fuller lives.”
Many PAH patients initially misdiagnosed
PAH is a type of pulmonary hypertension, a group of conditions characterized by abnormally high pressure in the blood vessels between the lungs and the heart. This leads to symptoms such as shortness of breath, weakness, chest pain, and dizziness. PAH is caused by thickening and narrowing of the tiny arteries in the lungs, which restricts blood flow and raises pressure.
According to the American Lung Association, between 500 and 1,000 new cases of PAH are diagnosed in the U.S. each year. While it’s most common in women ages 30 to 60, it can also develop in men and in people of all ages, including children.
A 2024 study found that about 40% of PAH patients were initially misdiagnosed, and saw an average of three physicians before getting a correct diagnosis. The research showed that a lack of awareness of PAH among patients and primary care physicians, as well as its nonspecific symptoms, contribute to this delay.
“It is heartbreaking to hear so many stories about delays in diagnosis and treatment that significantly impacted their lives,” Schroeder said. “Their stories reinforce why our new campaign is so important.”
Harold Wimmer, President and CEO of the American Lung Association, added in a press release that “the incredibly lengthy and frustrating journey that too many people experience before being diagnosed with PAH … underscores the urgent need for more awareness about this disease, not only for people facing respiratory symptoms, but also for healthcare providers to help identify PAH in their patients earlier.”
‘Getting the right diagnosis matters’
While there is no cure for PAH, several treatments are available to help control symptoms and improve quality of life. In addition to medications, treatment regimens include pulmonary rehabilitation and supportive care options. Eating a modified diet, exercise, and avoiding tobacco smoke can also help ease symptoms.
The campaign was informed by social listening — an ongoing process of tracking, gathering, and analyzing online conversations about PAH and listening to the experiences of people with the disease.
“Our campaign was informed by social listening to understand trends and conversations happening online and in the pulmonary arterial hypertension community and from the experiences of people living with PAH,” Wimmer said.
The campaign also features two people living with PAH, including Jen Cueva, who began experiencing dizziness, shortness of breath, and a racing heart more than 20 years ago. A misdiagnosis of asthma and instructions to increase her exercise by a lung specialist only led to alarmingly worsening symptoms. Further testing by a second lung specialist eventually confirmed a PAH diagnosis.
“After living with PAH since 2005, I know how much getting the right diagnosis matters. That’s why the American Lung Association’s campaign means so much to me,” said Jen, who is a manager of partnership relations at Bionews and a Pulmonary Hypertension News columnist. “Earlier diagnosis can connect people with specialized care sooner and treatment combinations that may improve their symptoms and quality of life. This PH Awareness Month, my hope is that more people find answers sooner, giving them more opportunities for treatment and more time to make memories with the people they love.”
The second story follows Jenna O. from being too breathless to climb a flight of stairs, through a diagnosis process described as exhausting, to finding a specialist and returning to world travel.
“Travel is very important to me,” Jenna said. “I told my specialist from the beginning that I wanted to keep traveling while managing my disease.”
With support from Merck, the American Lung Association is developing resources based on what it learned from the PAH community.
Earlier diagnosis can connect people with specialized care sooner and treatment combinations that may improve their symptoms and quality of life.
These include PH Basics, a new free online class on understanding the disease, new and worsening symptoms, treatment options, and the need for a treatment plan. Another resource is the free Lung HelpLine, where people can speak with nurses and other experts about treatment options, support, financial assistance, and additional resources.
Educational resources provide evidence-based information on how PAH is diagnosed, treatment options, and living life with the disease. More information is available at Lung.org/PAH.
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