Maharashtra’s haemophilia community is facing a severe crisis as life-saving medications, crucial for managing bleeding episodes, remain out of stock in government hospitals. The shortage of essential clotting factors, including Factor VIII, Factor IX, Factor VII, and Activated Prothrombin Complex Concentrate (APCC) for inhibitor patients, has left thousands of individuals vulnerable to permanent disability, extreme pain, and even death.
The Hemophilia Society Mumbai Chapter, representing over 5,500 haemophilia patients in the state, has been relentlessly advocating for the timely supply of these medications. Despite repeated meetings with officials from the National Health Mission (NHM) on October 17, November 21, and December 5, no resolution has been reached. On December 13, 21 patients at KEM Hospital, one of Mumbai’s leading hemophilia care centres, were turned away due to the unavailability of these life-saving drugs. The crisis has been exacerbated by logistical challenges. The daycare center at Thane Civil Hospital, another vital treatment facility, operates only until 4 pm, making it inaccessible for patients who travel long distances. Patients arriving after working hours are unable to receive treatment. Moreover, the Thane facility, facing a severe shortage of clotting factors after NHM’s procurement tender failed due to lack of bidders, has started rationing its stock.
Further complicating matters, the absence of advanced, long-acting clotting factors, which require only weekly infusions, has led to increased patient distress. These factors are more effective and cost-efficient in the long run, yet they remain unavailable in government facilities, forcing patients to endure frequent treatments that disrupt their lives. Jigar Kotecha, honorary secretary of the Hemophilia Society Mumbai Chapter, voiced frustration with the government’s lack of action, stating, “This neglect is creating more disabled people instead of empowering us. Without treatment, we cannot work, study, or support our families. The government is failing to protect our basic rights.” Advocacy groups have called for immediate measures, including ensuring an uninterrupted supply of clotting factors to all government hospitals, streamlining the NHM’s procurement process, and extending the operational hours of treatment centres like Thane hospital to better serve patients in remote areas. The situation has reached a critical point at KEM Hospital, a globally recognized training hub for haemophilia care, which is struggling to provide even basic treatment.
Experts warn that if the crisis continues, it will lead to an increase in permanent disabilities, economic hardship, and preventable deaths. “Patients are crying in pain. Surgeries, accidents, brain bleeds, and abdominal bleeds pose life-threatening risks. The government must act immediately,” Kotecha stressed. The hemophilia community is now urging Maharashtra’s Chief Minister to intervene directly, with demands for state funding for treatment, which is currently non-existent, and immediate procurement of the necessary medications to prevent further loss of life and quality of life.
