ASSAM: When doctors told Salim Ahmed and Jatin Bayan that their ailing sons required the costly bone marrow transplant (BMT) costing around Rs 14 lakh, their world nearly collapsed. Months later, they have regained their world: their minor sons have recovered after treatment in Bengaluru, thanks to a unique Assam government healthcare scheme.
Thalassemia in Taqi – Ahmed’s only child – was detected five years ago. His condition deteriorated quickly. The child was taken to a Chennai hospital where doctors told the parents the disease was genetic and that it required BMT.
Hope arrives
The family’s dejection back home gave way to hope when they learnt about Assam government’s ‘Sneha Sparsha’ scheme. Following a screening process, Taqi was shortlisted for treatment. He was sent to Bengaluru at the Narayana Hrudalaya with which the Assam government had tied up. He recovered after 40 days. “Taqi was only five years old when we took him to Chennai.
We had got all sorts of tests done ever since he was detected with the disease when he was a yea and a half old,” recalls Ahmed, a resident of Dhubri from lower Assam. After he learnt about Sneha Sparsha, he took his son to the Gauhati Medical College and Hospital (GMCH). Taqi was shortlisted for BMT following screening, which is conducted on the 10th day of every month.
“I have no words to thank Health Minister Himanta Biswa Sarma for this scheme; the way it is benefiting the poor,” Ahmed says. “I could not have afforded the treatment, but for the government help”. His wife Lieuza Alom says they had left everything to God before leaving for Bengaluru. “We were not sure if we’d ever get our child back alive,” says the mother.
Rare disorder
Bayan says the detection of the disease in his 12-year-old son Dhruwark was accidental. He says the disease was detected while his family had accompanied the family of his sister-inlaw to Delhi. The son of his sister-in-law was a patient of adrenoleukodystrophy, a rare genetic brain disorder. Since it is genetic, Bayan got his son tested which revealed the disease in his boy.
“We were told only BMT could help. We visited AIIMS and learnt about the huge cost involved in the treatment,” says Bayan, who belongs to northern Assam’ Udalguri. “When we returned home, our relatives told us about Sneha Sparsha. We contacted GMCH Superintendent Dr Abhijit Sarma who told us that the government would take care of the treatment,” said Bayan.
The boy recovered after undergoing BMT in January this year. “I am grateful to the Health Minister and the Assam government,” he says. The state government initiative is meant for children below 12 years of age who come from poor families. The scheme, implemented by the National Health Mission (NHM), Assam, was flagged off in 2013 with a fund of Rs 5 crore. So far, 539 families have availed of its benefits.
How it works
The Sneha Sparsha Committee takes care of the cases. Following the screening of patients and their family backgrounds, it submits a list of beneficiaries to the NHM for f u n d s approval. “Usually, such p a - tients visit a medical college. The database is kept by district authorities and evaluated at the respective medical college.
Once, the evaluation is done, the reports are shared with the nodal office which is at the GMCH,” says Dr Sarma, who is the member-secretary of the Sneha Sparsha Committee. The treatment of some of the admissible diseases under the scheme is done in the state, but those who need critical care are referred to health institutions outside the state.
The Sneha Sparsha Committee recommends, depending on the merit of the case, either referral for super specialty treatment outside the state or for considering the reimbursement of the medical expenses incurred while undergoing treatment in the state. For both groups, financial assistance is offered under Sneha Sparsha. “Most cases pertain to leukaemia and thalassemia.
Each case entails an expenditure of around Rs 13 lakh. Sometimes, when a patient requires special medication, the cost may shoot up to Rs 19 lakh. So, the state government is spending a huge amount,” says Dr Sarma. He also says that BMT, liver and kidney transplants are the major cases, but there are other diseases covered under the scheme. The government reimburses in other cases where the cost is below Rs 1 lakh. The families are required to submit bills for evaluation by the Committee. Those above Rs 1 lakh are decided by the NHM.