Women with Pulmonary Arterial Hypertension Face Significant Disease Burden | ACC 2025

Women with pulmonary arterial hypertension (PAH) experience a high burden of disease that impacts their lives regardless of where they reside, according to a small study presented as a poster at the American College of Cardiology Annual Scientific Session and Expo.

Pulmonary arterial hypertension is a rare, progressive, and life-threatening disease in which blood vessels in the lungs narrow, causing strain on the heart. About 40,000 people in the United States are living with pulmonary arterial hypertension. The five-year mortality rate is about 43%.

PAH is more common in women. Among all cases in 2021, 62% were among women, according to one study published last year. For women of childbearing and childrearing age, there is a significant risk, including maternal mortality as high as 56%.

Ioana R. Preston, M.D.

Researchers — led by Ioana R. Preston, M.D., associate professor of medicine at Tufts University School of Medicine — wanted to understand the challenges that women with pulmonary arterial hypertension across different regions face. They recruited 26 women to participate in qualitative interviews: 12 in the United States, 4 in Germany, 4 in Italy, 3 in Canada and 3 in the United Kingdom. The participants answered open-ended questions on perceived burden and management of PAH, focusing on family planning, pregnancy, and child care.

The responses were assessed and stratified by region: the United States compared with Europe/Canada. The women in the study were between 21 and 50 years of age, with a mean age of 43 in the United States and 37 in Europe/Canada. In the United States, 41% of women were raising children. In Europe/Canada, 51% were raising children.

Patients reported that the burdens of their disease were high in both regions. Mental health issues, especially were high across both regions. Patients said they experienced depression, self-isolation, and complications with pregnancy.

Most patients reported limitations in activities of daily living. Additionally, patients across both regions reported challenges in interaction with the healthcare system and a high overall financial burden. Some patients reported a lack of empathy from treating physicians, a long wait time for appointments, and some were not satisfied with their specialist.

Researchers said one limitation of the study was its qualitative nature, which can lead to sampling bias and limits the generalizability of findings to broader populations. Additionally, participants may not accurately remember past events and experiences.

The study presented at ACC was sponsored by Merck, which markets Winrevair (sotatercept-csrk). Winrevair is currently approved in the United States and 40 countries to treat pulmonary arterial hypertension and to reduce the risk of clinical worsening events. The FDA approved Winrevair in March 2024.