Co-authored by Gerald Fischer, PHA Europe
Living with Pulmonary Arterial Hypertension (PAH) affects not only patients but also the caregivers who support them, facing daily challenges of advocacy, medical oversight, and emotional resilience. Gerry, father to a PAH patient, shares his perspective as a caregiver who traveled the world to secure treatment for his daughter. He addresses the need for accessible treatments, caregiver resources, and a supportive global health infrastructure for all PAH families, emphasising that no family should face these challenges alone.
A Father’s Relentless Advocacy
When Gerry’s daughter Maleen began showing symptoms of PAH as a young child, it was a confusing and terrifying time for the family. Despite being told by doctors that Maleen would “grow out of it,” Gerry and his wife trusted their intuition. He recounts their lengthy search for answers, during which many professionals dismissed their concerns. Finally, after years of persistent advocacy, Maleen was diagnosed with PAH, but the only treatment option required extensive travel from Austria to New York. “You feel helpless and desperate, but you do whatever it takes for your child,” Gerry recalls.
Over time, Gerry became not just a father but a fierce advocate, dedicating his efforts to both his daughter’s health and broader PAH awareness. Today, he is an active member of PAH Europe, fighting to secure access to treatment for all PAH patients, regardless of geographic or socioeconomic barriers.
Global Disparities in PAH Treatment
While Maleen was fortunate to access specialised care, Gerry emphasises that thousands of PAH patients worldwide are denied such treatment due to financial and geographic limitations. In some regions, the cost of treatment is prohibitively high, leading to an unacceptable reality where treatment hinges on location and income level. “Imagine knowing there’s a life-extending therapy available but being told you can’t access it because you live in the wrong country,” Gerry says. For many parents, this realisation becomes a source of immense frustration and heartbreak.
To bridge this gap, electronRx is committed to developing scalable, accessible health solutions. For instance, remote health monitoring could reduce hospital dependency by allowing patients to record critical metrics at home, cutting costs, and creating better access to care for patients in underserved areas. “Healthcare should be a universal right, not a privilege limited to certain countries.”
Supporting Caregivers and Empowering Families
Beyond patients, caregivers carry a heavy emotional and logistical load. PAH’s daily management often means balancing medications, monitoring symptoms, and arranging hospital visits. Gerry reflects on his experience, explaining that caregivers need both emotional support and practical resources. Many caregivers are forced to navigate a complex healthcare system with little guidance, resulting in isolation, burnout, and missed opportunities for support.
Gerry emphasises that, in addition to family support, patients need a strong network beyond the home. Patient advocacy groups, such as PAH Europe, play a vital role in educating both patients and caregivers on disease management. These groups provide a community, resources, and training sessions where families can connect with healthcare professionals and other patients who understand their struggles. Gerry stresses that advocating for PAH patients requires all stakeholders—families, clinicians, and policymakers—to work together toward a common goal: ensuring the best quality of life for PAH patients.
For electronRx, partnering with these advocacy groups creates a holistic approach to care. By aligning technological advancements with patient needs, electronRx aims to bridge the gap between research and real-life applications, making medical advancements more relevant and accessible. The urge for a healthcare model that prioritises empathy, accessibility, and collaboration.
