The central government’s recent policy change to redirect funds from medical colleges to district hospitals for hemophilia treatment has affected Mumbai’s KEM Hospital as it lacks critical resources to treat patients affected by the genetic disorder.
The state health department has immediately appealed to the Union health ministry for intervention to restore funds and ensure continuous care of hemophilia patients across the state.
Hemophilia is a genetic disorder that prevents the blood from clotting properly, requiring regular injections of clotting factors to prevent severe bleeding episodes. Without these treatments, patients face complications such as internal bleeding, joint deformity, and even death. In Mumbai alone, there are about 950 registered hemophilia patients, and the shortage of treatment has become critical.
Earlier, the Center allocated funds to supply clotting factors to medical colleges like KEM Hospital. However, recent directives from the Union Health Ministry have shifted this funding to only government-run district hospitals, leaving corporation-run medical colleges like KEM ineligible for support. This policy change has put not only KEM Hospital, Mumbai but a primary care center for patients across Maharashtra, in a difficult position, struggling to manage its patients without the necessary resources.
At KEM Hospital, doctors are forced to ration the limited stock of hemophilia treatment. As a result, many patients are suffering from internal bleeding and are increasingly turning to private care, which is often excessive. The situation is particularly critical for patients experiencing cerebral hemorrhage, where immediate and adequate treatment is essential for survival.
One such case involves a 29-year-old IT project manager from Meera Road, who suffered severe bleeding in muscles and joints. Initially directed to Thane Civil Hospital, he was referred to KEM Hospital for specialized care. At KEM, he received two units of factor VIII concentrate intravenously.
For effective treatment, patients typically need 20-50 units of clotting factors per kilogram of body weight, but due to shortages, patients face delays in receiving adequate treatment. This delay increased the risk of complications, especially in severe cases such as cerebral hemorrhage.
Dr Mahendra Kendra, Assistant Director (Blood Cells), Maharashtra Directorate of Health Services, identified the challenges caused by the policy change. “The reallocation of funds from medical colleges to district hospitals has made it difficult to provide continuous care to hemophilia patients,” he said. “KEM Hospital, which serves as the primary treatment center for hemophilia patients across Maharashtra, is no longer eligible for funding. We have reached out to the center and are working to find a solution.”
Meanwhile, JJ Hospital, another major government hospital in Mumbai, is eligible for the new fund. However, it lacks the specialized treatment infrastructure that KEM provides. This has left many patients without the care they need, as JJ Hospital’s facilities are not equipped to handle ongoing, specialized hemophilia treatments.
Reacting to the crisis, the Hemophilia Society of Maharashtra has expressed concern and appealed to the Union Health Ministry for immediate intervention. Hemophilia Society (Mumbai Chapter) Secretary Jigar Kotecha has emphasized the urgency of the situation in a letter to the Ministry. “We are not asking for luxury; we are asking for the survival of hemophilia patients,” Kotecha wrote. “The NHM’s support has had a positive impact on patients in other states, but Maharashtra is facing a crisis due to the gap in implementing the same measures here,” the letter reads.
Currently, patients are relying on clotting factors donated by the Hemophilia Federation, but these supplies will only last for the next seven days, further complicating an already dire situation.
The Haemophilia Society’s letter also raised concerns about the denial of factor supply in tertiary care hospitals such as KEM. Kotecha asserted, “If KEM Hospital denies supply, where will these patients go? Until an alternative center is officially designated, denying KEM supply will leave thousands of patients without treatment.”
The society called for a reconsideration of the policies preventing KEM Hospital from getting the necessary resources and a clear plan to ensure uninterrupted access to treatment.
Dr. Mahendra said, “Our priority is that the dependents of KEM should not be at risk.