Context
Pulmonary arterial hypertension (PAH) is a rare and progressive form of pulmonary hypertension (PH) that causes narrowing of the blood vessels in the lungs. If left untreated, PAH leads to heart failure, with high rates of hospitalisation and death.
People with PAH live with an invisible disability that affects every aspect of their lives, including their mental health, education, work, relationships and their ability to walk or complete household tasks. However, because PAH does not typically have a visible physical impact, individuals living with the condition are often misunderstood by healthcare professionals and other people around them.
In the past few decades, scientific advances have opened up opportunities for new treatments that improve survival and halt the progression of PAH. These treatments can support people with PAH to live longer and with a better quality of life.
However, people with PAH typically wait years before receiving a diagnosis, seeing multiple healthcare professionals and being misdiagnosed with common conditions. They also face financial and geographical barriers to receiving effective care and treatment from an expert centre. In some countries, the health system does not reimburse treatment for PAH, creating unacceptable inequalities in outcomes across the world. Currently, one in five people with PAH die within three years of diagnosis.
Communicating the needs of people with PAH and where systems are falling short is essential to addressing these issues and ensuring individuals living with the condition have access to high-quality care.
