• A two-year-old boy, born thalassemia major, was refused free transfusion at a government-run blood bank in Deoghar on November 24. His father was asked to replace the units and when the latter cited national guidelines, the family was shown the door
• At RIMS in Ranchi, outstation thalassemia patients are made to wait for days for blood instead of being asked to pay or replace units. Many who can't afford a longer stay prefer to seal the deal for Rs 300 per unit or go to private blood banks, where the charge ranges from Rs 1,000 to Rs 1,200
• Last month, yet another thalassemia major was refused B+ blood at Nagarmal Modi Seva Sadan in the capital. The private hospital, which cited no stocks to spurn the 11-year-old boy, had no problem giving the same blood to a pregnant woman whose relatives offered replacements

Ranchi, Dec. 14: These are just few drops in the sea of inhuman neglect in which people suffering from thalassemia drown in Jharkhand, where no steps are taken to enforce national guidelines that clearly state that "no cost should be charged for issue of blood/components to patients... who require repeated transfusions as a life-saving measure".

Blood banks across the state tweak and twist the central guidelines to suit their interests, putting patients and their kin through relentless ordeal, which the government turns a blind eye to.

Dr Manoj Gupta, nodal officer of the blood bank in Deoghar, conceded that they sought replacement units. "It is our rule. It is not that we are not giving blood for free, but for every alternate transfusion, units must be replaced to allow the blood bank to sustain itself," he said.

An official at Nagarmal Modi Seva Sadan echoed Gupta. "It is very difficult to provide free blood to thalassemia patients when people in general are not donating blood freely. Unless we have stocks, how can we offer units on demand," he said.

Dr B.L. Sherwal, the director of state-run RIMS, said he was strict about ensuring free transfusion for thalassemia patients. Apprised about the waiting period many were subjected to, he said there was crisis at times. "But, I will probe the matter. There is a standing instruction not to keep patients waiting."

Deputy commissioner of Deoghar Arva Rajkamal said the district suffered from blood crisis because of frequent road accidents. "Every week, there are at least 10 mishap cases involving severe blood loss. So, it is often difficult to entertain thalassemia patients, especially when donation is scarce."

Thalassemia is an inherited blood disorder in which the body makes an abnormal form of haemoglobin. The disorder results in excessive destruction of red blood cells, which leads to anaemia and patients need regular transfusions.

Thalassemia major occurs when a child inherits two mutated genes, one from each parent. Children born thus usually develop the symptoms of severe anaemia within the first year of life. They lack the ability to produce normal, adult hemoglobin and experience chronic fatigue.

Thalassemia minors have at most mild anaemia and don't need transfusions. Thalassemia intermedia is a term used for patients in whom the clinical severity of the disease is somewhere between the mild symptoms and acute manifestations of thalassemia major.

The Union ministry of health had issued guidelines in January 2008 that no cost should be charged for issue of blood components to patients of thalassemia and haemophilia.

The governing body of the National Blood Transfusion Council in June 2009 affirmed the policy and had issued instructions to all NACO-supported blood banks that "no service charge should be levied for issue of blood/blood components to patients of thalassemia, haemophilia and sickle cell disease".

But, violations continue unabated.

Atul Gera of Life Savers, a voluntary outfit of regular blood donors, said the state had around 500 thalassemia major cases among children aged up to 15 years alone. "Every day, harried parents come to us for replacement units to facilitate transfusion. You can imagine the extend of corruption."

Gera said it was time for doctors, hospitals and the health department to guide people on component use of blood. "For instance, if a patient needs platelets, relatives do not need to arrange for whole blood. Segregation of components is the key to buffering the crisis that blood disorder patients like thalassemics and haemophiliacs face," he summed up.