College after college has rejected her application on the plea that she will not have the stamina to complete the course. But Gita feels otherwise. ``They told me I would get exhausted, but I know I can manage.''.

Strapped to a drip machine for her routine blood transfusion at the Thalassaemia Paediatric Ward in Sir Ganga Ram Hospital here, Gita philosophically takes the ritual into her stride. And though the entire transfusion process takes a good six to seven hours, her ordeal does not end here.

Gita, like many others suffering from thalassaemia major (the more severe form of the disease), needs to remove the excess iron which accumulates in the body as a result of multiple transfusions. The process of removing it, known as chelation, is by introducing a substance into the body called desferriooxamine (desferal). It is introduced slowly under the skin with the help of an infusion pump over eight to ten hours.

At present, desferal is the only safe available treatment for iron overload. Though an oral capsule is also available in the market, its efficacy and long-term safety are yet unknown. According to Dr V.K. Khanna, head of the Thalassemic unit of Sir Ganga Ram Hospital, India is one of the few countries where the oral drug is commercially available.

Sold under the brand name `Kelfer', the drug has to be administered three to four times a day and cuts the financial costs by one-sixth as compared to the injection. ``But the side-effects of Kelfer are more harmful. Twenty per cent of children who administered the oral pill developed joint pains and one per cent registered a drop in the white blood cell count'', he says.

Gita was initially taking the oral medication but stopped it due to complications. The infusion method, too, is also not without its drawbacks and problems encountered are swelling at and around the injection area, an allergic reaction like sneezing, difficulty in breathing, chest pain, lip or eye swelling and fever. In India, about 100,000 people are afflicted with thalassaemia, while 30 million others are carriers of the defective gene and 8,000 to 10,000 new thalassemics are born every year. If left untreated, a child with the disease usually dies within the first five years because of the effects of severe anaemia on the heart and other vital organs.

Thalassaemia can be cured with bone marrow transplantation but the cost is exorbitant and available to only a few. Even the supportive therapies like blood transfusion and iron chelation therapy can be a major economic drain on the family. Six-year-old Sonaki comes to the hospital every month for transfusion of one unit of blood. In the past three years, she has not needed supplementary iron chelation therapy but doctors now advise that she begin this treatment.

Her father, Pawan Kumar, is a salesman in a private company. ``For desferal treatment, I will have to procure an infusion pump for Sonaki and this costs Rs 12,000 to Rs 13,000. From where can I get so much money?'' he asksThe transfusion unit at the hospital carries out 250 transfusions in a month. The unit has four beds and an easy chair for older children and young adults and functions on three different shifts per day. ``There is a demand for more beds and we hope to extend the unit with three more beds'', says Dr Khanna. ``In Delhi itself, there are over 1,000 cases of thalassaemia major,'' he adds.

Deepak Chopra, chairman of Thalassemics India, claims that most hospitals in the country do not have facilities for carrying out a simple Hepatitis C test for screening safe blood. Hepatitis C is an infection which can be contracted as a result of multiple transfusions.

Government officials, however, maintain that solutions are not always that easy to find. According to Dr V.N. Sardana, Joint Director of the National Aids Control Organisation (NACO), four tests are mandatory in all hospitals under the drug and cosmetic act. These tests are for Hepatitis B, Syphillis, Malaria and HIV.

``Unfortunately, we could not make the test for Hepatitis C mandatory, because testing facilities for this do not exist here. More than resources, what we need is to procure the equipment and train people to handle it'', he said. The tests are likely to be available by April next year, he added.