Italian docs bring Thalassaemia cure

November 23, 2010


It’s a ray of hope for Thalassaemia patients, particularly so for those who cannot afford expensive treatment. The city will soon have a “Bone Marrow Transplantation” unit (BMT) set up by a pioneer team of doctors from Instituto Mediterraneo di ematologia (IME), Italy. The department is headed by Prof Guido Lucarelli, a renowned transplant physician for Thalassaemia.

‘Cure Thalassemia India’, will be a not-for-profit organisation providing support to health professionals working for the cause of children affected by Thalassaemia, said Eugenio La Mesa one of the organizers for BMT centre and a social business entrepreneur.

Currently BMT is the only curative option for this fatal inherent blood disorder. Usually a patient requires life-long blood transfusion every three to four weeks, in addition to medicines, failing which 90 percent of the children affected by the disease die in early childhood.

The team from Italy is in Hyderabad and has visited hospitals in the city to finalize the hospital for the BMT unit. Once the finalisation has been done, a specialist team from IME will train the local doctors and nurses in this treatment. The treatment includes transplantation for 100 per cent and 50 per cent HLA (human leukocyte antigen) matched donors, said Dr Pietro Rodani, transplants specialist from Rome.

There are 1400 Thalassaemia patients registered with the AP Thalassaemia Society. If they have a chance of undergoing BMT, chances of their recovery will be high, says Chandarakant Agarwal, who is responsible for discussing the possibility of establishing the BMT centre here and whose daughter is also a thalassemic patient.

“A unit supported by them in Pakistan has completed 35 bone marrow tranplantations for Thalassaemia.
It has been two years since the tranplantation and the children treated under their protocol are completely cured of the disease and are now healthy. All procedures were performed by Pakistan’s team of doctors trained under them,” Chandrakant said.Parents of children suffering from Thalassaemia were present.

Transplant cures girl of thalassemia

May 15, 2010

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Helena, a two-year-old thalassemia major patient, has become the first person to receive a successful mother-to-daughter bone marrow transplant in the Capital.

The transplantation was performed at the Rajiv Gandhi Cancer Hospital and Research Centre (RGCHRC) on February 10 and the doctors have ruled out complications anymore as more than two months have passed since the procedure.

“She (Helena) showed the usual problems initially but she has no complication now and has been cured of Thalassemia,” said Dr Dinesh Bhurani, a senior consultant (haematology) at the RGCHRC, who did the transplant.

Bone marrow transplant is a rare procedure owing to the difficulty in finding a tissue match. And a parent-to-child transplant is particularly rare as the probability of a tissue match in such cases is a mere three per cent.

Only transplants between siblings show a better probability of tissue match with a one in four, or 25 per cent, chance.

“For a bone marrow transplant to be performed, the human leukocyte antigens, or HLA, in the donor cells must closely match those in the recipient cells. HLA are cell surface proteins. The immune system recognises cells as ‘self ‘ or ‘foreign’ based on these proteins,” said Dr J. S. Arora, the general secretary of National Thalassemia Welfare Society and Federation of Indian Thalassemics.

Dr Gauri Kapoor, a senior consultant (paediatric haemato-oncology), RGCHRC, echoed Arora. “In bone marrow transplantation, the donor’s immune system replaces that of the recipient.

If the tissues don’t match, this new immune system may recognise the recipient’s body as foreign and attack organs and tissues,” she said.

In Helena’s case, although the HLA in her cells didn’t match that of her siblings Raunak and Sanjana, they matched those of her mother Meena Kaur.

Helena, whose father Indra Kumar is employed with a multinational company in Russia, developed health problems when she was one.

She underwent treatment at the Mata Chanan Devi hospital in West Delhi and later at the Deen Dayal Upadhyaya hospital.

Doctors at Deen Dayal hospital told the child’s parents that she would need blood transfusions for life. “She needed blood transfusions every month but then her condition started deteriorating,” Kaur said. Helena had to discontinue schooling as her health deteriorated.

When there was no sign of improvement in Helena’s condition, her parents consulted doctors at the RGCHRC, and they suggested a bone marrow transplant as the last resort and only cure for the condition.

MDRI to Set National Bone Marrow Registry

May 15, 2009

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Marrow Donor Registry, India (MDRI) announced plans to set up a national bone marrow registry to provide unrelated marrow transplant facilities in India to patients with leukaemia, thalassemia and other blood disorders. This first-of-its-kind initiative spearheaded by Dr Sunil Parekh and Dr Ashok Kripalani will make the tissue typing reports of donors of Indian origin available to patients globally without them having to travel abroad for the treatment. This initiative serves as a ray of hope to Indian patients who, up till now, paid over Rs 1-1.5 crore for a single unrelated marrow transplant treatment.

MDRI hosted a conference in Mumbai involving prominent doctors from major international registries such as the UK, the US, Europe and Australia along with representatives from all major transplant centres in India. Together, the participants planned to prepare a roadmap for moving forward in making these registries viable. Said Dr Sunil Parekh, “India needs its own marrow donor registry, which will have donors of Indian origin. In the first phase, we are planning to establish registries with 1,00,000 altruistic donors who pledge to donate their bone marrow stem cells. In the next five years, MDRI will need an investment of Rs 75 crore to increase its database to a million donors of Indian origin worldwide.”

Said Dr Ashok Kripalani, “The facility of unrelated marrow donor transplantation is highly advanced in developed nations. In such countries, HLA typing and matching with voluntary unrelated donors are well established. Currently, there are over 12 millions voluntary unrelated marrow donors already registered worldwide. Their HLA typing results are available in computerised database. Patients from such countries can usually find a matching donor and can have marrow transplant done. The western registries have extreme paucity of matching volunteer donors for Indian patients, since we Indians are genetically different from the western population.”

India gets its first “Marrow Donor Registry” formed

April 20, 2009

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Announcement of the “Creation of First Marrow Donor Registry in India”; Prominent doctors from major international registries like UK, Europe, USA and Australia along with representatives from all the major transplant centres in India discussed important roadmap for moving forward, in making these registries viable

Dr. Ashok Kirpalni & Dr. Sunil Parekh of Marrow Donor Registry India organised a seminar along with prominent doctors from major international registries like UK, Europe, USA and Australia along with representatives from all the major transplant centres in India at the Bombay Hospital. “Creation of First Marrow Donor Registry in India” was announced and important roadmaps for moving forward in making these registries viable were discussed during the seminar. (List of Speakers is attached below)

“Every year nearly 40,000 patients in India die because unrelated Marrow transplant facilities are not available in India”, said Dr. Kirpalani. “In the absence of viable Marrow Donor registries in India, a person of Indian origin faces two major problems. Firstly – The western registries have extreme paucity of matching volunteer donors for Indian patients, since Indians are genetically different from the western population; they need donors of Indian origins and Secondly – the rare Indian who does find a matching donor from these databases will have to go abroad for a bone Marrow transplant and incur heavy costs which ranges between 1–1.5 crores”, he explained.

“With the intention of eliminating these serious problems that our Indian patients encounter, we are setting up a Bone Marrow Registry having a national outreach in India. Our sole objective is to help patients with leukaemia (Blood Cancer), thalassemia and other blood disorders who are in need of a Marrow Transplant”, said Dr. Kirpalani addressing the media during conference.

The facility of unrelated Marrow Donor Transplantation is highly advanced in developed nations. In such countries, HLA typing and matching with Voluntary Unrelated Donors is well established. Currently, there are over 12 millions voluntary Unrelated Marrow Donors already registered worldwide. Their tissue typing (HLA typing) results are available in computerized databases. Patients from such countries can usually find a matching Donor and can have Marrow transplant done. But unfortunately in India the total number of unrelated voluntary donors is negligible. Hence there was a need in India to have a Marrow Donor Registries of its own, which naturally will have donors of Indian origin. Their tissue typing reports will be available to patients globally, thus helping patients from within India as well as Indians worldwide.

“We need to have 1 million voluntary altruistic donors. The major cost is of setting up a HLA tissue typing of the donors. Also substantial investment is required in computers, database information processing facilities to search throughout the local as well as worldwide registries as rapidly as possible. This task, working at the edge of medical technology, also requires staff of a high calibre”, said Dr. Sunil Parekh.

“The overall cost of such a venture will be a few thousand crores. Hence in the first phase, we are planning to establish registries with 1,00,000 altruistic donors who pledge to donate their bone marrow stem cells, which will need Rs. 75 crores within the next 5 years”, he added.

The implementations of the various processes have been accelerated by preparing a website and database program which is being done by M/s Syntel, audio/video presentations and M/s Mudra communications. Both the projects are also being sponsored by them respectively.

“We need the understanding and co-operation of large industrial houses and businesses as well as social organisation in order to achieve our goal without which this huge humanitarian endeavor will not be possible. Hence we take this opportunity to request one and all to come forward and lend a generous helping hand in saving the lives of those, where Bone Marrow Transplant is the only hope of cure”, said Dr. Kirpalani addressing all at the end of the seminar.

Public cord blood banking to help patients

April 9, 2009

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AHMEDABAD : After success of the first umbilical cord blood stem cell transplant on one-and-a-half-year-old Rishi Bhanushali, who
completed a year after the operation, experts have reiterated the need for having public cord blood banking so that more children suffering from thalassemia major and blood cancer can be helped.

“If cord blood of one lakh children is stored in a public bank and Human Leukocyte Antigen (HLA) typing done, almost every child suffering from thalassemia and blood cancer will be able to find a match for a bone marrow transplant,” said Dr Sandeep Shah, director of bone marrow transplant at Vedanta Hospital. Currently, umbilical cord blood cells are banked by private banks wherein parents pay annual charges for storage of stem cells.

“If there are more public banks where HLA typing has been done, patients will be able to find a match easily and get better results as umbilical cord blood stem cells show better tendency to grow into normal cells,” said Dr Shah.

These cord blood cells will be beneficial to patients who do not have siblings. “Rishi is the first child of his parents and did not have siblings to donate bone marrow. He was lucky to have found a six by six match from umbilical cord-blood samples donated in the public bank by Reliance Life Sciences,” said Dr Shah.

The initial 60 days are important as there could be Graft-Versus-Host Disease (GVHD) complications. “Rishi, however, has shown good results which is a promising development for thousands of thalassemic patients in Gujarat,” he adds.

Rishi’s grandfather Bhimji Bhanushali said that while Rishi is doing extremely well, they are waiting for another year to put him in a play school.

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