Six-year-old Amit Shankar (not his real name) has to visit a blood transfusion clinic every three to eight weeks to maintain his haemoglobin level. This is a common routine for the child, who is among the estimated 11,000 thalassemia patients in Bihar.

Thalassemia is an inherited, genetic blood disorder where the patient's body cannot produce adequate haemoglobin, resulting in the need for continuous blood transfusion. It is one of India's main disorders for ailing child health.

"My son needs blood transfusions every month and the rates vary from hospital to hospital," said Amit's father, a small-time trader. "The government should interfere and fix the rates."

Unfortunately for patients like Amit, not only does Bihar not have any thalassemia treatment centre - government or private - but the blood transfusion centres also are all private establishments; therefore, a patient has to shell out more money than he or she would at a government clinic.

Ahsan, a four-year-old, was diagnosed with thalassemia when he was six months old. "His treatment began with blood transfusions every three months but soon turned into monthly transfusions," his mother told The Telegraph. "My son has a negative blood group so searching for blood for him becomes a horrendous task. While people don't mind donating blood once or twice, donating blood on a regular basis is not possible for most people."

Nayan Mehta, a 45-year-old resident of Rajendra Nagar, needs blood transfusion every six weeks. While the city was busy with revelry during Durga Puja, Mehta had a tough time. "I needed blood during the Puja celebrations. Most of the regular donors avoid donating blood in the festive season, so one of our relatives in New Delhi had to come here and donated blood."

Thalassemia treatment comprises blood transfusion and bone marrow transplant. As many of the patients are from economically backward sections of society, it is difficult for them to fork out the regular transfusion payments.

"One sitting for blood transfusion costs between Rs 1,500 and Rs 3,000," said Patna-based oncologist Jitendra Kumar Singh. "Apart from the cost factor, what is more important is the availability of blood."

He added: "When I was the director of Mahavir Cancer Sansthan, time and again we approached the government for opening a centre for thalassemia patients where blood transfusion and counselling could both be conducted and the patients would not have to pay for hospital stay, medical fees or laboratory charges. But the government never took it up on priority basis. I again urge the government to pay attention towards this matter."

Despite several attempts, the secretary and principal secretary of the health department could not be reached for comment.

In January 2008, the Union health ministry had issued guidelines that "no cost should be charged for issue of blood/blood components to patients of thalassemia and haemophilia, who require repeated blood transfusion - a life saving measure". The Bihar government has failed to follow the guidelines, said Dr Singh.

There are several other obstacles to treatment, said Kumar Shailendra, who runs a thalassemia society at New Gardiner Hospital in Patna.

"The government should come forward with an affordable centre at Patna Medical College and Hospital or Jai Prabha Blood Bank," Shailendra said. "A comprehensive centre where patients can avail of blood transfusion and counselling will not only benefit them but the government will also be able to identify the exact number of thalassemia patients."