Haemophilia patient dies, father stresses on treatment woes

The deceased Lalakumar Prajapati ‘s father claimed shortage of medication in Panvel forced the family to rush to Mumbai every time he had even a minor bleed.

Written by Tabassum Barnagarwala | Mumbai | Published: May 30, 2017 2:47:48 am

A 29-year-old haemophilia patient from Panvel, who had been admitted to KEM hospital since May 23, passed away on Saturday due to septicemia. Even as his treatment was underway, his parents and doctors had a tough time looking for free supply of NovoSeven, a drug needed to clot bleeding from his throat. Haemophilia is a rare blood disorder that prevents blood clotting in the body. Heamophilia type A and type B patients often need coagulating drugs called Factor VIII or IX during episodes of bleeding.The deceased Lalakumar Prajapati ‘s father claimed shortage of medication in Panvel forced the family to rush to Mumbai every time he had even a minor bleed.

“KEM doctors sent us away claiming there were no beds. When his condition became critical, on May 23, doctors operated his throat for infection, but it was already late. His condition worsened from May 25, when the bleeding started,” Prajapati, a bhelpuri hawker, said. Lalakumar also required change in dressing because of the bleeding, which the family claims was delayed and led to spread of the infection.

Doctors at KEM claimed the patient died due to septicemia, but was treated for haemophilia. “We have shortage of Factor, but we procured 20 vials of NovoSeven from Amravati to treat Prajapati,” said a doctor from the haemophilia department. Maharashtra has 4,100 registered haemophilia patients. Mumbai has about 1,000, of which KEM has 809 registered patients. While Prajapati did not die due to haemophilia, his family claims the worry of procuring Factor made his treatment full of stress. Two other critical patients, Durgesh Landge (16) and nine-month-old Arhan Naikodi, currently lie in KEM hospital, where their parents and doctors are struggling to procure NovoSeven. Another patient, Netram Dewahe (22), has been admitted to KEM for a month, awaiting NovoSeven to undergo a knee surgery. Before this, he was admitted in a Nagpur hospital for two months, waiting for the same medication.

“Doctors say until we can procure enough coagulating Factor, they can’t go ahead with the operation. It is too expensive,” Netram said. One unit of Factor costs Rs 30. Haemophilia patients need at least 1,000 units in one session, mounting the treatment cost to lakhs. In case of NovoSeven, one mg costs Rs 45,000, and a patient requires several.

“The government needs to have a policy to stock medicine for emergency haemophilia cases. The shortage has been acute since the past five months,” said Rupal Panchal, treasurer of Haemophilia Federation of India. The Directorate of Health Services (DHS) started providing medicines for free to government hospitals two years ago. This year, delay in tender process has kept all hospitals scrambling for Factor VIII IX. “It is also available for free under Rajiv Gandhi Jeevandayee Arogya Yogana upto Rs 1.5 lakh per patient,” said Dr Satish Pawar, director at DHS.

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