There is a pall of gloom in the Worli residence of deceased 19-year-old Rupesh Shinde. It has been a month since Rupesh died in the BMC-run KEM Hospital after internal bleeding. He was suffering from Haemophilia, a genetic disorder in which a patient's blood does not clot.
According to data compiled by Haemophilia Society, Mumbai Chapter, 96 patients suffering from Haemophilia have died in the past four years. In haemophilia persons, genes producing Factor 8 or 9 proteins, which are responsible for blood clotting, are defective. The protein is thus not produced in adequate levels in the body. The patient can bleed to death in the absence of medication. Worldwide, Haemophilia Day is observed on April 17.
On March 2, when the Shinde family was attending a function in Matunga, Rupesh was alone at home. "He went riding on his bicycle and met with an accident. The bicycle handle hit his stomach. He ignored the pain and was rendered unconscious," said Gautami Shinde (42), Rupesh's mother.
The next day, the family took Rupesh to the hospital where doctors said that his condition had turned critical.
Rupesh required administration of Factor 8 injection daily from March 5 until March 10. Each injection dose costs close to Rs 15,000. The state supplies Haemophilia medication to only four centres across Maharashtra – Thane, Satara, Amravati and Nashik.
"Rupesh was profusely bleeding from inside but had to be taken to Thane every day for the injection," said Gautami. On March 14, Rupesh succumbed to his injuries as the KEM doctors could not control formation of blood clots in his stomach.
The Haemophilia Society of India intervened and appealed to the state health department, Maharashtra to make a stock of anti-haemophilic injections in Mumbai and Pune. "Since a month now, KEM hospital in Mumbai and Sassoon hospital in Pune have stocked up the medicine. But there has been an acute shortage of medicines for upto three times since April," said Balshiram Gadwe, president of the Haemophilia Society of India, Mumbai Chapter.
In India, there are close to 16,000 detected patients suffering from the disorder. Of the 3,000 cases in Maharashtra, 1,200 are from Mumbai. "40% of these patients in Mumbai are under 15. Majority of them suffer from a severe form of haemophilia where a patient may start bleeding internally at any point of time. If injections are not administered immediately, a patient may bleed to death," said Gadwe.