Children’s Center for Pulmonary Hypertension in Ukraine.
Access to care, one of several World PH Day themes, resonated with the PH community globally. People with PH from different parts of the world recounted their experiences on social media for the May 5 event and throughout the past month, shedding light on how disparities in care affected their lives.The Pulmonary Hypertension Association shared several of their stories in May on social media in connection with the PHA Europe-led event. Read on to learn more:Access gaps in Australia“Access to care is absolutely essential for all PH patients,” says Erin Baker of Sydney, who has idiopathic pulmonary arterial hypertension. “Pulmonary hypertension is so intricate and requires specialized treatments that many people in Australia, and worldwide, don’t have equal, ready and adequate access to.” Baker’s story underscores the disparities in health care access, particularly in vast countries like Australia, where geographical barriers can lead to gaps in care.Challenges in ChileTeresa Muller, director of the Chilean Pulmonary Hypertension Association, highlighted the lack of specialists and referral systems in Chile. Delayed diagnoses often mean the disease progresses significantly by the time patients receive appropriate care.“Advocating for the specialization of doctors could lead to more accurate diagnoses and faster, more effective care for our citizens,” says Muller, who has PH. “Until this change occurs, many will continue to struggle to seek necessary care, understand their diagnosis, or receive the treatment they need from our health systems, both public and private.” Muller also stressed the importance of having a patient registry for comprehensive care and follow-up.Advocacy in NigeriaAyotunde Omitogun from Lagos, Nigeria, shared her self-advocacy journey and challenges in managing her PH. Without adequate guidance from health care providers, Omitogun had to rely on her own research and advocacy to receive the necessary treatment.Determined to improve the situation, she co-founded “Yo Sabi PH,” an organization dedicated to raising PH awareness by educating doctors, patients and the public about the disease. “Managing treatment barriers and cultural stigmas is a constant challenge,” Omitogun notes. Her work underscores the disparities in PH understanding and treatment across different regions and the importance of self-advocacy and education.New beginnings in UkraineThe Lviv, Ukraine, PH community celebrated a significant milestone with the opening of the first PH center in western Ukraine. The Children’s Center for Pulmonary Hypertension, a collaborative effort by the Pulmonary Hypertension Ukrainian Rare Disease Association and other local organizations, aims to provide comprehensive care for children with PH.Equipped with advanced diagnostic technology, the center ensures early diagnosis and access to treatment, a critical step in managing this disease. The center also focuses on education to ensure families are well-informed about PH and its management.About World PH DayWorld PH Day, founded in 2012 by PHA Europe, is a global day of spreading PH awareness.This year’s campaign centered on several subthemes: “United for Early Diagnosis,” “United for Hope,” “United for Access to Care,” “United for the Patients,” and “United for a Cure.” Together, these themes highlighted the importance of unity in addressing the diverse challenges faced by those living with this rare, life-threatening disease.World PH Day 2024 underscored the global commitment to improving the lives of those affected by pulmonary hypertension and how the PH community stands united. The stories of these patients from Australia, Ukraine, Chile and Nigeria highlight the progress made and the work still needed to ensure that every person with PH can lead a healthy, fulfilling life.
