Doctors, patients scan hospitals in Maharashtra for haemophilia drugs
Mumbai city news: Members of Haemophilia Society, an NGO, which works closely with 4,500 patients in the state, said that the drugs were being arranged from different parts of the state like Nashik, Amravati and Navi Mumbai for the past five days.mumbai Updated: Jul 11, 2017 08:50 IST
Doctors, social workers and patient’s relatives are reaching out to hospitals across the state to ensure that haemophilia patients get their medicines, afraid that the stock of anti-haemophilia drugs will last only two days.
A genetic disorder, haemophilia impairs the body’s ability to clot blood, a process essential to stop bleeding.
Members of Haemophilia Society, an NGO, which works closely with 4,500 patients in the state, said that that the drugs were being arranged from different parts of the state like Nashik, Amravati and Navi Mumbai for the past five days.
The members said that they had managed to procure 27 vials, which would most likely be used for patients currently admitted in the emergency wards of KEM Hospital, one of the six nodal centres for haemophilia treatment.“Some vials have come from Amravati on Friday, while a couple of them were arranged from Navi Mumbai. But this will last two days. If we get more patients or the patients currently under treatment need additional infusion, we have to find another way to arrange for the drugs,” said Ajay Palande, secretary of Haemophilia Society- Mumbai Chapter.
Mainly divided in two types, haemophilia A and haemophilia B patients need specific drugs to treat the deficiency of clotting factor VIII and clotting factor IX. Experts said that a normal patient may need the infusion four times a month, depending on the severity of the disease — 1000-1500 units of factors at a time. One unit costs about Rs 9.5- Rs10 , bringing the total cost to about Rs70,000- Rs80,000. The government provides the drugs at subsidised rates, but procurement has been delayed. When patients develop inhibitors or resistance to both the factor injections, they need two extremely expensive and scarce drugs known as Novaseven and FEIBA, stocks of which are not available with the state government due to the lapses in their e-tendering process since October 2016.
“The cost of the medicines alone run in lakhs and we are solely dependent on state government and donations for the supply. We have been trying to avail the medicines so that patients aren’t inconvenienced but with the number increasing day by day, its getting extremely difficult to manage,” said Dr Avinash Supe, dean of KEM Hospital adding that at this moment they were providing the drugs free of cost.
Mumbai has 886 haemophilia patients and Thane has 250-300.
Head of the department of Hematology, Dr Chandrakala S has been trying to reach out to other nodal centres and experts of the state to arrange the medicines for the patients. “We have stocks of Factor VIII and Factor IX but Novaseven and FEIBA are short in supply. The issue is also that patients are coming to us at severe stages, which increases the workload. We are arranging the medicines from Nashik and Kolhapur,” she said.