Haemophilia patients in state helpless as medication runs outs

Maharashtra haemophilia patients face medicine shortages, forcing travel to Gujarat for treatment, risking health and demanding urgent government action.

MUMBAI: A 39-year-old haemophilia patient, who had internal bleeding in his right knee joint, travelled to Surat on February 20 to prevent lifelong disability. “The medicines for my condition are not available in Maharashtra anymore,” he said. “I couldn’t delay taking them or I would risk losing my leg. The last option was to get help from Gujarat.”

Haemophilia patients in state helpless as medication runs outs

It has been 15 days since his travel, and the bleeding has started again. “Given my condition, I need to take medicines at least twice a month to keep everything under control,” he said. “But for the last three months, we have been struggling to get them. I cannot afford travelling to other states every time.”

Haemophilia is a rare genetic disorder in which a person’s blood is unable to clot, which could lead to internal bleeding, including at the joints. “To stop the bleeding, we administer Anti-Haemophilic Factors (AHF), which are an extremely important part of the treatment,” said a doctor from the BMC-run KEM hospital, which is the only nodal centre for haemophilia treatment in the city.

Jigar Kotecha, 33, is a haemophilia patient and secretary of the Haemophilia Society (Mumbai chapter) which represents 5,500 registered patients across Maharashtra and is affiliated to the Haemophilic Federation (India). Kotecha has been running from pillar to post to demand that medications be made available to patients in the state.

“For the last six months we have been meeting officials to find a solution,” he said. “We met the state health minister twice in February but to no avail. If AHF is not made available in the next few days, we will have no choice but to demand euthanasia.”

When bleeding occurs in a haemophiliac, they have to take 30 to 40 units of blood-clotting factors for every kilogramme of their body weight. “Till now, we were getting AHF at a subsidised cost but now if we have to pay, the treatment costs somewhere between ₹12,000 and ₹15,000,” said a patient. “We are surviving on donations for whatever little we can get hold of.”

Two major AHFs used to stop bleeding are the plasma-derived factor VIII, made from human blood, or a recombinant factor produced in the labs with DNA technology. “When we asked the authority for answers, we were told that due to a lack of blood donation, the plasma-derived factors were not available, and owing to currency fluctuations, the expensive recombinant factors could not be imported,” said Kotecha.

A KEM doctor refuted this claim. “The technology has advanced in the last decade and we don’t use just plasma factors anymore,” he said. “More research is underway to adopt international techniques such as anti-factor therapy, which requires a lesser amount of factors but is equally effective. We are trying to manage on our own with new research and international techniques so that we can work with available factors. At times, we buy additional factors from other vendors.”

In a letter to Ranga Naik, mission director of the National Health Mission (NHM), the Haemophilia Society requested that Maharashtra allocate funds separately for Haemophilia, restore the NHM budget, which was cut from ₹91 crore to ₹27 crore last year, redirect funding to KEM Hospital and Sassoon Hospital and allow procurement of a new factor called Extended Half-Life (EHL), which gives relief to a patient for at least seven days unlike other drugs which are effective only for a few hours.

The Maharashtra directorate of health services, meanwhile, is in the process of acquiring the requisite drugs. “We finalised the work order on January 20,” said an official. “According to the rules, the company has asked for 90 days to supply the plasma-derived factor VIII. We hope they deliver on time.”

Even if the AHF stock is supplied on time however, it will be available only to district hospitals, due to a new central government rule of last year that redirected haemophilia funding to government-run district hospitals. The nearest accessible hospital for Mumbaikars will now be a centre in Thane, while the civic-run KEM, rendered ineligible by the new rule, will have to fund and operate its haemophilia facility by itself.