Parents of thalassemic children cry foul over haplo stem cell transplant
The health ministry, in response to an RTI query by a Patna-based businessman, said it did not approve or grant recognition to the haplo stem cell transplant for thalassemia affected children. Yet, a Jaipur hospital continues to do it, with a doctor claiming that bone marrow transplant does not require permission as it does not come under the organ transplantation Act.Updated: Apr 04, 2018 20:15 IST
Parents of many thalassemic patients, who died after undergoing haploidentical (partially-matched) stem cell or bone marrow transplant at the Soni Manipal Hospital in Jaipur, feel cheated.
By the hospital doctor’s admission, 14 of the 26 thalassemia patients have died in less than a year-and-a-half of undergoing the partially matched bone marrow transplant (BMT) since the health facility began doing the procedure in 2014-15.
“Eight out of 26 died in first 100 days due to transplant related mortality, which translates into 70% success. Unfortunately, three more died later, reducing the success rate to around 60%. Two more died 5-6 months post BMT and one death was reported after 16 months,” said Dr Satyendra Katewa, head, department of paediatric hemato-oncology and BMT, Soni Manipal Hospital.
Having lost their loved ones, what is pinching the parents most is having spent a huge amount of money on a procedure, which the health ministry has not approved.
The health ministry, in response to a recent RTI query by a Patna-based businessman, who lost his nephew 15 months after the procedure, said it did not approve or grant recognition to the heplo stem cell transplant for thalassemia-affected children. HT has a copy of the health ministry’s response.
“Bone marrow transplant does not require any permission as it does not come under the organ transplantation Act,” said Dr Katewa, in his defence. He is among a few doctors in India doing the procedure.
Many parents, most from outside Rajasthan, have alleged that Dr Katewa misled them into the procedure, citing conservative costs and high success rate up to 95%, leaving them physically and financially drained.
Struggling with life after their child’s death, some parents have complained about the doctor to the Prime Minister, the Union health minister, the chief minister of Rajasthan, the National Human Rights Commission (NHRC) and the Medical Council of India (MCI).
The MCI has directed most of these complaints to its respective state association, where the complainant belongs to. However, the NHRC has taken cognizance and sought reports from the health brass of Rajasthan as well as the commissioner of police, Jaipur.
Amit Kumar Agarwal, a Patna-based businessman, is one such victim who has taken up cudgels to fight for the beleaguered parents, and filed a case in the Patna civil court.
“I was left with no option but to file a case after the Patna police, despite my three attempts to the Kotwali police, did not entertain my request to register a formal complaint of cheating against the doctor,” said Agarwal.
“I spent over Rs 3 crore on the treatment of my 16-year-old nephew, Krishna Agrawal, who died last December, 15 months after the procedure at the Soni Manipal Hospital, Jaipur.
Agarwal alleged his nephew died due to complications arising out of the haploidentical stem cell transplant. He also alleged that the doctor misled him, saying the procedure had 90%-95% success and would cost only Rs 25-30 lakh.
Dr Katewa, however, denied all allegations.
“Transplant related mortalities are those that happen within 100 days. In case of Krishna, he survived 16 months. We successfully managed GVHD (graft versus host disease) five or seven months after the transplant. His death has nothing to do with the procedure,” said Dr Katewa.
“I never lie to any patient. The success rate varies between 50% and 70%, depending whether a patient is high or low risk. Our success percentage is at par with the ratio of 100% matched stem cell donor in case of thalassemia patients from India,” he added.
However, like Agarwal, many parents also feel cheated. Among them are Delhi’s Subhash Chander Sharma, who lost her daughter Yamini, 18, seven days after BMT; Haryana’s Navneet Kukreja whose daughter Diya, 14, died 15 days after BMT; and Sonepat’s Vivek Verma, whose four-year-old daughter Mithi died 20 days after BMT.
Karnal’s Jitendra Sachdeva thinks he is lucky. He left the procedure midway to return home.
“Seeing at least 14-15 deaths of thalassemic children after BMT at the hospital during the over four-month stay (June-October, 2016) at the hospital, I insisted on a voluntary discharge of my son Madhur, 18, leaving the procedure midway. My son lives on, requiring blood transfusion every 20-24 days,” said Sachdeva.
Sushil Aneja of Faridabad also abandoned the procedure on his son Guransh, 9. “I withdrew my son after seeing 7-8 thalassemia children die in front of my eyes in the six months (May-November, 2017) of treatment at the hospital,” said Aneja, an executive in a private firm.
Most parents alleged that the doctor was experimenting on their children, keeping them in the dark about the relatively high mortality rate involved in the procedure.
However, Dr Katewa defended himself.
“Haploidentical bone marrow transplant is being done in the US, UK, Germany, Thailand, Italy, Russia and even in India. If someone is not doing the procedure, it does not make it wrong,” he added.