On World Pulmonary Hypertension Day, healthcare professionals and patient associations warn that people with pulmonary arterial hypertension (PAH) urgently need faster diagnosis, a clear care pathway and access to innovative therapies.
They highlight the major challenges faced by patients with PAH - a rare, progressive and severe disease that damages the lung vessels and can lead to heart failure if not identified and treated in time. According to the latest National Health Insurance Office report, 775 patients are currently diagnosed in Romania.
Without a coherent care framework, many patients reach specialists late, during which time the disease progresses and the risk of death increases. Untreated idiopathic PAH has an average survival of just 2.8 years from diagnosis. Symptoms such as shortness of breath, fatigue, dizziness or chest pain are often mistaken for other conditions, delaying diagnosis by months or even years.
On this occasion, the medical community and patient groups call for strengthening the national care network, updating the patient pathway and expanding access to innovative treatments that can prolong life and reduce the burden of the disease.
At the initiative of PAH patient associations, a dedicated route for the 6-minute walk test - an essential tool for assessing functional capacity and monitoring disease progression - is being launched at the 'Marius Nasta' Institute in Bucharest.
"Any delay in correct diagnosis means more severe symptoms, anxiety and limitations in daily life. We want every person suspected of pulmonary hypertension to have rapid access to diagnosis, treatment and monitoring. The launch of the 6-minute walk test route shows that change is possible when we work together," said Radu Ganescu, president of the Coalition of Patients' Organizations with Chronic Diseases.
"Marking the 6-minute walk test is more than symbolic - it makes the patient's real journey visible. We hope this encourages faster diagnosis, proper monitoring and, above all, access to innovative treatment," added Bogdan Burduja, president of the Association of Pulmonary Hypertensive Patients.
Also for World Pulmonary Hypertension Day, the communications tower of the Special Telecommunications Service in Bucharest will be illuminated.
Pulmonary arterial hypertension is a rare form of pulmonary hypertension marked by increased pressure in the pulmonary arteries, which strains the right side of the heart. The disease requires specialized diagnosis and long-term multidisciplinary care.
