29 November 2010
By Jyoti.Shelar
Indian Council of Medical Research says Sion hospital should not charge for treating muscular dystrophy patients as it has not been approved yet
The Indian Council of Medical Research (ICMR), a nodal body of the central government, has termed stem cell therapy for muscular dystrophy provided by the hospital as unethical.
Terming improvement that patients have reported, as nothing but a 'placebo effect, ICMR's assistant director general (stem cell research), Dr Geeta Jotwani, said, "Other than bone marrow and haematological cancers, stem cell therapy for any thing else is unproved.
Clinicians offering this experimental therapy cannot charge a single penny and can only do it as a part of free trials." She added that ICMR had not given the hospital an approval to offer the therapy. However, since ICMR is not a regulatory body, it cannot take any action.
Muscular dystrophy is a genetic disorder in which the patient's muscles lose their elasticity leading to disability. At Sion hospital, patients are asked to pay for the chemical agents and tests required for the therapy.
However, the neurosurgeon who has been spearheading the stem cell therapy at Sion hospital, Dr Alok Sharma, argued, "A physician has the right to try unproven treatment for any disease which does not have an available medicine for cure or reduction.
Sharma has used the World Medical Association’s Helsinki Declaration as an ethical background to continue giving the therapy.
Discussing the fee issue he said, "Patients don’t have to pay the hospital and the doctor charges. They only pay for the chemical agents required for harvesting the stem cells and the tests which cannot be done in the hospital," he added. The patients are charged anywhere between Rs 15,000–25,000.
However, all the parents Mumbai Mirror spoke to said the fee being charged was nominal. "Private hospitals charge over Rs 1.5 lakh per shot of stem cells. Even if the therapy is in a trial stage I don’t mind spending as I hope it will bring some improvement in my child’s condition," said Kalpana Kant, mother of 25–yr–old Ankur, who was given therapy last year.
According to Sharma, the patient’s own stem cells are harvested from the bone marrow, due to which there are no chances of side effects. "Many muscular dystrophy patients have sought mercy killing from the President. All I am doing is giving them a ray of hope," he said.
Jotwani retorted, "Patients have to face more stigma and trauma when the condition relapses."
Case Studies
Chirabazaar Resident Pankaj Sutane whose 9–year–old son Deep is being treated through the therapy is unhappy with the results. "In the three months after being given the shots, I have only seen my son’s condition deteriorate," he said.
"I knew that the therapy was controversial and at a trial stage. However, there is no other treatment available for this disorder, and I couldn’t deny my son this one chance. Neverthless, I may still go back for a second shot and pray that my son’s condition improves."
Ankur Kant, a 25–year–old, was first diagnosed with muscular dystrophy when he was three years old. At the age of 15 his condition was so bad that he needed an oxygen cylinder every day. He was taken to Dr Sharma in August 2009, and since then, his family says he has shown remarkable improvement.
"After the first shot of stem cells, Ankur’s feeding tube could be removed and he was able to eat on his own. He gained some weight and his breathing problems also subsided," said Ankur’s mother Kalpana. She added, "After the therapy, he breathes easy and we need one cylinder in 15 days."
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