Around 50 parents of thalassemia-affected children have made serious allegations against the supposedly laidback and insensitive approach of the state government, doctors, gynaecologists and the city civil hospital at a press conference organised by Prathama blood centre in Vasna, in protest.
Parents of thalassemia-affected children, on Sunday, took over the dais at a press conference organised by Prathama blood centre in Vasna, in protest.
Around 50 parents have made serious allegations against the supposedly laidback and insensitive approach of the state government, doctors, gynaecologists and the city civil hospital.
These parents say that the policies of the state health department are doing little to counter this disorder. "The health ministry rejected my plea for funds, stating that it is not in keeping with the policies. They could easily have allotted the money required for my son's bone marrow operation, but they chose not to,” said Nikunj Shah, who has spent Rs15 lakh to save his son, a thalassemia major.
Shah is particularly unhappy with the government policies that neglect a disorder as widely-prevalent as thalassemia. "If they can help patients of heart and kidney problems, why not thalassemia sufferers?" questioned Shah.
Prathama had organised the press conference-cum-parents' meet on Sunday to create awareness about thalassemia. However, some parents couldn't help expressing anger towards the policies of the state government, as well as of doctors and gynaecologists.
"When you get yourself tested for pregnancy, the process includes a test for AIDS infection. So then, why can't a thalassemia test be included as well?" demanded Piyush Shah, whose son is a thalassemia major. Shah feels that doctors deliberately overlook thalassemia, as such patients' transfusions are a regular source of income to them afterwards.
A majority of the parents present said they spend between Rs5,000 to Rs15,000 every month, over transfusions and medicines. They are demanding a clear notification from the government that makes a thalassemia test compulsory during pregnancy.
Complaints from the parents ranged from those of government hospitals not paying attention to the quality of blood given in transfusions, to those stating that hospitals do not allow patients to arrange for blood on their own. Incompetent doctors were also discussed, as parents complained that doctors often make multiple punctures in the veins of their very young children, while giving them transfusions.
Shrichand Bhambani, whose 22-year old son has been suffering from thalassemia since birth, said he is back-broken due to financial strain. "In India, if AIDS and cancer are worrying the government, why are they indifferent to thalassemia?" he demanded.
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