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When a 35-year-old Mira Road resident suffered internal bleeding in his knee last October, he was immediately rushed to KEM hospital. As a haemophilia patient, his body cannot clot a bleed, making it important to administer medication immediately.
The hospital, the only nodal centre in Mumbai for haemophilia patients, had run out of the medicine, factor IX, due to delay in procurement by the government and a huge patient load. The digital agency executive had to return home and wait for two days before a support group under Haemophilia Federation of India donated him the required medicines.
“Most centres in the state do not have these medicines. Due to this, a lot of load transfers to KEM, which ultimately also faces acute shortage,” said Rupal Pancha (45), a haemophilia patient who has filed a petition in the Bombay High Court regarding this.
Haemophilia is a rare genetic disorder that prevents clotting, leading to excessive blood loss. In Mumbai, while the government had planned to start two treatment centres in Wadia and KEM hospital, only the one in KEM bears the load of 809 registered patients. On Wednesday, 45 haemophilia patients were treated at KEM, several from outside Mumbai.
Across Maharashtra, there are over 4,000 haemophilia patients. But centres to treat them are available only in Pune, Nashik, Amravati, Ratnagiri and Aurangabad, while two more in Nagpur and Ahmednagar are stuck in delays. “These are only day care centres. For complicated cases, patients come to KEM,” a haemotologist from KEM hospital said.
Haemophilia patients sometimes require surgical intervention for internal bleeding and swelling. Day care centres are not equipped to handle such cases. “Our only issue is irregular supply of medicines. Haemophilia patients must be treated within two hours, but here the delay is much more that that,” the haemotologist said.
One unit of factor VIII or IX cost Rs 10. A patient purchasing it privately may need about 2,500 units every day to treat internal brain bleeding for seven days. The cost, thus, runs into lakhs.Even tertiary hospitals such as Nair and JJ in Mumbai do not have a proper ward for haemophilia patients.
According to Vijay Satbir Singh, additional chief secretary (health), there was a delay in calling for tenders for the medicine last October. “We required certain specifications and only a few companies were eligible. The process takes time. But now, medicines will be procured,” he said.
However, Bhandup resident Ajay Palande claimed that despite several requests, state government officials cite fund shortage for the delay in medicine supply.
“I have faced life-threatening situations so many times for want of medicines. The government needs to keep some stock as back-up for haemophilic patients,” Palande said, adding more centres were also needed to distribute patient load.