Intense chemotherapy in 2011 cleansed Mayur’s blood of the abnormal cells that were making him sick and putting his life in danger. But a year and a half later, the acute leukemia relapsed.

This time, the doctors at the Dinanath Mangeshkar hospital in Pune recommended an allogenic bone marrow transplant for the 29-year old software engineer. Stem cells from a donor could be infused into his body to produce fresh, healthy blood cells.

Mayur is a single child. His mother’s marrow did not match and his father turned out to be a haplo – a ‘half match’ in common language. At the ripe age of 62, doctors were not sure that the father’s stem cells could be successfully harvested.

It came down to looking for an unrelated donor in the registries. Three more rounds of chemotherapy were administered while the search continued.

The rising demand for donors

India was estimated to have more than one lakh cases of leukemia in 2010, a number projected to rise to 1.17 lakh in 2015, according to the Indian Council for Medical Research. About 35-40% of the patients reportedly require allogenic bone marrow transplants. But only a third of the cases are able to find a match in the family. The remaining two-thirds must look for an unrelated donor. “Only 5-10% of them are actually able to find one,” said Dr Lalit Kumar, head of Institute Rotary Cancer Hospital at the All India Institute of Medical Sciences.

India currently has just three active bone marrow registries: DATRI, a non-profit initiative headquartered in Chennai, Marrow Donor Registry of India, an NGO run by the Tata trust with close association with the Tata Memorial Hospital in Mumbai, and Bharat Stem Cell Registry, a non-profit based out of Delhi. Two more registries in Bangalore and Delhi exist only on paper.

Until DATRI began operations in 2006, none of the major hospitals in the country were doing unrelated allogenic transplants. The registry’s success in matching patients with donors made doctors more confident of going ahead with the procedure. The number of patient requests rose from 465 in 2012 to 797 in 2014, said Raghu Rajagopal, DATRI’s co-founder and CEO.

One of them was Mayur, who found a donor in 26-year old Aby Sam John.

Blood brothers

Aby, who belongs to Kerala and works in Chennai, had lost his father two months before he received a call from Rajagopal informing him that he was a potential match for Mayur. “Since my family had faced a personal crisis, everyone objected to my stem cell donation because they were afraid it might affect my health,” he said. “But I went ahead. I felt if I could help save someone’s life, my father’s soul would be happy.”

Aby’s stem cells were collected at Apollo Hospital, Chennai. “It was just like blood donation,” he said. “One feels slight weakness for a few hours but a glass of juice takes care of it.”

While Aby had donated his stem cells for free, Mayur had to cover the costs of mobilising, harvesting and transporting them – all of which require specialised equipment, storage and staff. Altogether, his family spent Rs 19 lakh on the procedure.

With the transplant, Mayur acquired healthy blood cells, and a new blood group from Aby. 18 months later, when the two met – the general international protocol makes it mandatory that details of the donor and recipient be kept confidential for the period – Mayur hugged Aby and called him “blood brother”.

But not everyone is as lucky as Mayur.

The difficulty of finding a donor

Ankita was diagnosed of cancer for the third time in June. The 25-year-old has Hodgkin’s lymphoma, a cancer that starts in the white blood cells. In 2014, she underwent an autologous transplant: her stem cells were removed, treated and reinfused. But with the relapse, she has now been prescribed an allogenic transplant.

To prepare for the transplant, she would have to take more rounds of chemotherapy and an injection, Brentuximab, for four months. The injection, imported from United States, would cost Rs 20 lakhs a month.

“My brother and parents are all half-matches,” she said. “In absence of a donor, how do we decide whether to have further treatment or not? What if after all that high dose chemo, we are told four months later that there is no donor?”

The chance of finding a genetically matched donor for an Indian, Rajagopal said, ranged from one in 10,000 to one in two million. “With such low probability, it is necessary to have a very large registry of willing donors,” he said.
But India lacks such a registry. While DATRI boasts of the maximum registered donors at a little above 92,000, Marrow Donor Registry of India reportedly has 25,000 donors and Bharat Stem Cell Registry only 3,500 registered donors.

DATRI has facilitated over 100 donations in five years – half the donations took place in 2014. Marrow Donor Registry of India, meanwhile, has found 10 full matches till now, of which two were successfully donated.
Bharat Stem Cell Registry has facilitated two transplants so far – the first in September 2013 for a 22-year old leukemia patient being treated at Rajiv Gandhi Cancer Hospital in New Delhi. The second was facilitated for a German patient using an Indian donor’s stem cells.

Dr Navin Khattry, who heads the bone marrow transplant unit at ACTREC, an extension of Tata Memorial Hospital, believes India needs “a much larger pool of donors” to help patients.

Cord transplants

An alternative source for healthy stem cells is be the umbilical cord of a baby. Doctors have begun to encourage families to donate their babies’ umbilical cords, which are a rich source of blood-producing stem cells that can be used for bone marrow transplants.

Dr Sameer Bakhshi, pediatric oncologist at AIIMS which arguably performs the highest number of cord blood transplants in India, said healthy cords are relatively easier to procure than unrelated donor matches.

The upside of cord blood transplant is that chance of complications like the Graft Versus Host Disease is much less as compared to donor transplants, particular haplo-matches. Moreover, cord blood banks take care of all logistics, practically freeing the hospital of all cumbersome formalities.

The downside, Dr Bakhshi explained, is that if a cord blood transplant fails, one cannot get a cord again. Second, cords take longer to engraft in the recipient’s body – 30 days as compared to 15 to 20 days in bone marrow transplants – so the period of risk is longer. Third, if the weight of the patient is beyond 50 kgs, doctors are not very comfortable with cord transplants as the ratio of cells per kilogram becomes poor.

Cord blood transplants are expensive, though, as the hospital stay is longer. AIIMS brings down the costs through subsidised hospital stay and cord imports from the United States. “Abroad, each cord costs around $30,000,” said Dr Bakhshi, “but AIIMS gets it at one-third the cost.”

Last year, AIIMS performed 7 cord blood transplants. “We could have performed more if we had beds available. There is already a four months waiting period for bone marrow transplants in pediatrics,” he added.

Cancer among children 

Children are particular vulnerable to leukemia.

Cradling 10-month-old Raahat in her arms, Sitara simultaneously tries to calm down 4-year-old Rehaan who is repeatedly asking for a train he saw at the local toyshop. Rehaan was diagnosed with acute myeloid leukemia in 2012. The couple had a second child in the hope that his stem cells could be used to cure his older brother in the future.

Rehaan was taken for a transplant in August after doctors succeeded in sourcing a cord from the US. But the cost of the transplant was far higher than what Rehaan’s father, an electrician who makes Rs 8,000 per month, could afford.

After spending their savings and taking loans from relatives and friends, the family turned to other sources. Rehaan received Rs 3 lakhs from the PM’s Relief Fund but the largest donation of Rs 4-5 lakhs came from CanKids, a non-profit that supports children with cancer.

Rehaan’s cord transplant was successful. “We could never have imagined getting this treatment done if CanKids did not help us,” said Sitara.

The way forward

It is not enough to encourage umbilical cord transplants. India will have to register more people as donors.

“Awareness is the key to building such a registry,” said Rajgopal. “Not many people know that they could be the only hope for a patient’s survival. Also, a lot of them do not know that a Peripheral Blood Stem Cell donation is a simple, harmless and a short procedure. In a society like ours, it is a challenge to educate and earn trust because there are so many irrelevant taboos and cultural factors to overcome.”

Questions that arise about the medical procedure could be handled better if healthcare institutions partner with DATRI and other registries to conduct joint awareness programs to enroll people for the cause, he added.

Pointing towards global surveys, Dr Vimarsh Raina of Bharat Stem Cell Registry said that Indians are genetically different, and hence, the third toughest race to find donors after South Africa and China. “If you will not find donors in India, will you find them in Alaska? We have so much population. Delhi alone can make the largest registry in the world,” he said.

The only question – a common one in cancer care – is that who will fund it?

This is the third part in a series on blood cancer care in India. The rest of the stories are here.