With the carrier rate of thalassaemia being 5% in Punjab as compared to the national average of 3.5%, the state government has failed to extend support in terms of policy making or financial aid to the patients despite repeated requests from NGOs working for the cause.
Contrary to the states like Rajasthan and Jammu and Kashmir that are providing 100% free blood transfusion to thalassaemia patients, Punjab is charging 6.5% sales tax on iron chelators (a medicine used to clear excessive deposits of iron), which is a must for the survival of thalassaemics.
Dr Praveen Sobti, a paediatrician and a thalassaemia expert who has devoted her life to the patients suffering from the disease and was recently appointed the state coordinator for "Project India", an initiative of International Thalassaemia Federation (ITF), has pointed out that the incidence of thalassaemia in Punjabi 'khatri' population goes up to 7.5%, an alarming figure.
Rakesh Kapoor, president of Zindagi Live Foundation, a Ludhiana-based NGO working for the cause of arranging free blood for thalassaemics, is the second state coordinator appointed by ITF. More than 80 countries across the globe are affiliated to ITF.
Dr Sobti, while referring to 6.5% sales tax on iron chelators, said, "Citing the examples of slum-dwellers who are unable to afford even a bottle of blood for their thalassaemic child, I had written to the commissioner, excise and taxation, to waive sales tax on iron chelators. But I did not get any reply."
She further stated that looking at the "highest" percentage of thalassaemics in Punjab, the state government should make provisions for free/adequate blood transfusion for every thalassaemic, a policy for mandatory screening of pregnant women at anti-natal clinics and free bone marrow transplant.
Further pointing towards the need to consolidate the linkage between private and government hospitals, the state coordinator for ITF stated that specialised faculty from Post Graduate Institute of Medical Education and Research (PGIMER), Christian Medical College and Hospital (CMCH) and Dayanand Medical College and Hospital (DMCH) would train paediatricians regarding screening of thalassaemic children at various hospitals across the state. The hospitals in small and big towns having trained doctors would be termed "satellite centres" from where screened patients would be sent to referral centres (medical institutions) for treatment. The ITF also plans to designate some hospitals as centres of excellence.
What is thalassaemia
The disease was commonly referred to as Mediterranean anaemia in the recent past and it first came to India with the invasion of Alexander. It is the commonest of congenital diseases wherein the patient has fragile haemoglobin that breaks easily and the patient is required to undergo blood transfusion once or twice every 15 days depending upon the severity of the disease.
If blood transfusion is not carried out, the individual dies in two years.
Bone marrow transplant is the only permanent cure for thalassaemia, the cost of which varies between `8-15 lakh depending whether it is a government hospital or a private one. However, it is unaffordable for majority of the families.
'State contributing to Central scheme'
Punjab director, health, Dr Karanjit Singh said children going to government and government-aided schools were being given the facility of free blood transfusion and iron chelators under Rashtriya Bal Swasthya Karyakram (RBSK) of the Centre. When asked about the facilities being provided by the state government to thalassaemics, he said the government was contributing its share in the above-said scheme. "We have also written to the Centre to make provisions for the bone-marrow transplant for children covered under the RBSK. But as of now, the scheme can't be extended to children going to private schools or those who are not enroled to any school," added Dr Singh.