HAE patients in J&K struggle without access to life-saving treatment

Srinagar, Aug 27: In Jammu & Kashmir, some patients have been identified with Hereditary Angioedema (HAE) — a rare and potentially life-threatening genetic disorder. Despite this growing patient population, government healthcare facilities, including civil and district hospitals as well as medical colleges, remain unequipped with the essential therapies required to manage acute HAE attacks. This gap in access highlights the urgent need for timely, coordinated intervention to ensure that patients across the region receive appropriate and life-saving care.
HAE is characterized by recurrent episodes of severe swelling, most commonly affecting the limbs, face, intestinal tract, and airway. Without timely treatment, attacks, especially those involving the airway can be fatal. District hospitals currently do not stock the approved, life-saving medications needed for acute management of HAE, leaving patients highly vulnerable.
The absence of standardized treatment protocols, continues to deepen the challenges faced by HAE patients. Many go undiagnosed or are misdiagnosed, and even those who receive an accurate diagnosis are often unable to access treatment due to supply gaps and policy neglect. For some, getting the right care means travelling hundreds of kilometres or paying out of pocket at private facilities — a situation that is neither fair nor sustainable.
It is crucial that Health Care system gets strengthen and work together to improve care for HAE patients. This means enabling early and accurate diagnosis, and ensuring that essential therapies are readily available at district and civil hospitals.
Given the rising number of HAE cases, there is an urgent need for the healthcare administrators and healthcare providers of Jammu & Kashmir to come together and ensure equitable access to care for patients with rare conditions like HAE.