Shortage of haemophilia drugs force patients to travel out of Mumbai
Mumbai city news: The search for the lifesaving drug has become a routine thing for more than 4,500 haemophilia patients across the state for the past seven monthsmumbai Updated: May 27, 2017 00:54 IST
Sagar Dhonde visited every hospital in Mumbai, pleaded with the public health department and eventually travelled all the way to Nashik for the medicine that would save his six-year-old haemophiliac son from bleeding to death.
The search for the lifesaving drug has become a routine thing for more than 4,500 haemophilia patients across the state for the past seven months. The lapses in the government’s e-tendering system has failed to ensure easy availability of anti-haemophilia drugs.
“For five days, we kept managing with our meagre stock and eventually pleaded with officials in the health department, who informed us about the availability of the drug at a hospital in Nashik. We travelled all the way and back for the treatment,” said Dhonde.
A genetic disorder, haemophilia affects the body’s ability to clot blood, which is necessary to stop bleeding. It has two types — haemophilia A and haemophilia B. Patients of each need specific drugs to treat deficiency of clotting factor VIII and clotting Factor IX. Experts said that a normal patient may need a factor infusion (to prevent bleeding) four times in a month, depending on the severity of the disease and the patient’s weight.
There are over 4,500 haemophilia patients across the state, 886 of whom are from Mumbai and 250-300 from Thane. Since October 2016, the patients have been travelling from one government hospital to another, in search of the drug. A patient needs infusion about four times in a month, with 1000-1500 units of factors at a time. One unit costs about Rs 9.5- Rs10 , bringing the total cost to about Rs 70,000- Rs80,000.
NGO’s help patients at KEM Hospital, the nodal centre for haemophilia, to coordinate with state officials and pharmacies and avail the medicines.
State officials promised quick procurement of drugs.
“We try and provide factor IX, which is rare and scarce at subsidised rates. But the problem is that there are no budgetary allocations for the medicines, and we have been facing the issue since October,” said Ajay Palande, secretary of Haemophilia Society of India- Mumbai chapter.
He added that nodal centers like KEM and Sasoon hospitals treat patients free of cost or at subsidised rates with the NGO’s help.
Rupal Panchal, a haemophilia patient who had filed a Public Interest Litigation in the Bombay high court last year said that the government had floated 13 tenders till date and none had ensured the availability of medicines since October 2016.
“The issue came up when the state adopted the e-tendering system for procurement of medicines. There is no policy framework and no specialised wards in government hospitals besides the two facilities at KEM Hospital in Mumbai and Sasoon Hospital in Pune,” said Panchal.
She added that it was high time that the DHS took up the matter. “Unavailability of medicines spells disability for us. These lapses will lead to our death,” said Panchal.