After months of chemotherapy, when 6-year-old Aman’s leukemia relapsed in September 2012, doctors at the All India Institute for Medical Sciences in Delhi told his father that he would require a bone marrow transplant. His older sister’s stem cells could be used to replace his diseased bone marrow which was producing abnormal and immature blood cells. The costs for the procedure: Rs 4 lakh to 4.5 lakh.

Aman’s father, Ramesh Kumar, makes Rs 4,000 a month working at a factory that manufactures schoolbags while his wife stitches buttons on readymade shirts. Before the family could arrange for the funds, Aman’s health deteriorated. Five months later, the child passed away.

“We could never afford the treatment but we kept trying to somehow save our child,” said Kumar. The medicines came free against the family’s Below Poverty Line ration card but there were always other expenses to meet. “We bought a small cooler for Aman because chemotherapy would make him feel hot and restless. Whenever I had some money, I would hire an auto to take him to hospital so that he would be comfortable,” Kumar said, his eyes welling up. “But maybe, it was not enough.”

The cost of transplants

A bone marrow transplant is an expensive procedure worldwide. In India, the cost is relatively less at centres run by the government and philanthropic trusts. Although Aman’s family could not afford it, the Institute Rotary Cancer Hospital at AIIMS offers among the least expensive cancer care in the country. Autologous bone marrow transplants, done using the patient’s stem cells after chemotherapy or radiation, are cheaper than allogenic transplants which involve a donor.

The cost is kept low at AIIMS through a variety of measures: several antibiotics are provided from the hospital resources, consulting doctors charge no fee, and room charges are merely Rs 37 per day. “We charge the rent as per rates for a general room even though the BMT ward [ward for bone marrow transplant patients] has state-of-the-art infrastructure,” said Dr Prabhat Malik, Assistant Professor at AIIMS.

The main expense is for harvesting the stem cells. “The procedure needs special kits, bags and storage facilities at -80° Celsius,” said Dr Sameer Bakhshi, Associate Professor. “Sometimes, the harvesting takes more than one attempt to mobilise the stem cells.”

This is what has happened with 17-year-old Mohammad*, a resident of Chandni Chowk in Delhi. Diagnosed in 2013 with Hodgkin’s lymphoma, a cancer that starts in white blood cells, he was given four cycles of chemotherapy at AIIMS. When the cancer relapsed in just a week, another cycle of second-line chemo was administered.

The family was told that he needed an autologous bone marrow transplant which would cost Rs 3 lakh. The stem cell harvesting failed in the first attempt. Mohammad is now being given another cycle of chemotherapy and a very costly injection to mobilise the stem cells.

Mohammad’s father works in an embroidery unit earning Rs 7,000 a month. His elder brother, who was pursuing graduation from Delhi University’s Motilal Nehru College, has since dropped out and is doing odd jobs, making around Rs 3,000 a month.

“I have four children to feed,” said his mother Shagufta*. “Where do we bring so much money from?”

Finding funds

Aditi was diagnosed with aplastic anemia in February this year. Her body had stopped producing enough new blood cells. The 9-year-old’s sister donated stem cells for her bone marrow transplant which was done at the Christian Medical College Hospital in Vellore in June. “All we could think about was where will we get the money for the transplant,” said Aditi’s uncle Anup Kumar.

Aditi’s father is a small shopkeeper in Ramgarh in Jharkhand and barely makes Rs 1 lakh a year. The family created Facebook posts to raise money for an allogenic transplant. That didn’t help. Eventually, their relatives pitched in. “We all pooled in our savings and collected Rs 7 lakh,” said Kumar.

The family further received Rs 3 lakh from the Prime Minister’s National Relief Fund and another Rs 1.5 lakh from Jharkhand government’s State Relief Fund. They have now applied for the remaining costs to be covered by the Tata Memorial Trust.

Transplants are a “self-paid procedure” in India, said Dr Vikram Mathews, the head of the Department of Hematology at CMC Vellore. Many centres dedicatedly help patients arrange funds through various sources but the onus lies on the patients’ families.

Aditi’s family, however, is grateful that the centre went ahead with the procedure even while they were still raising the funds.

“Till now, Rs 16 lakh has been spent on her treatment, of which Rs 14 lakh was for the BMT,” said Kumar. “Our family had savings so we could eventually manage through this crisis. But what about those from the economically weaker sections?”

NGOs and Trusts

Funding is one of the major reasons why patients throng to Tata Memorial Hospital in Mumbai. The hospital, in close association with various NGOs, civil society bodies, and the Tata Memorial Trust has created a model that helps patients from low-income families access quality healthcare.

Cancer survivor Poonam Bagai runs one such NGO called CanKids. It helped 4,500 children with medical treatment across India in 2014-’15. The drug budget alone last year amounted to Rs 2.65 crore, of which Rs 1 crore was spent at AIIMS. “We do not give the patients cash,” she said. “We give them drugs, diagnostics, prosthetics, palliative and terminal care drugs.”

The bone marrow transplant programme of CanKids has supported 86 children out of the 118 that applied for help. The rest either got funding from elsewhere or the children died before the treatment could begin. While 70% of such cases are funded partially by families, Bagai said, in 30% cases, funds are arranged completely by the NGO.

“We work closely with hospitals to see how much more medicines they can give us from their own resources,” she added. “The cost for autologous BMT in AIIMS, for example, is the lowest at Rs 2 lakh, but when funding comes from us, AIIMS also supports us. There have been cases when autologous BMTs have been done at as less as Rs 50,000-60,000.”

For families identified as living below the poverty line, some funding comes from the government scheme Rashtriya Arogya Nidhi, which provides financial assistance for those battling life-threatening diseases. Those who are not below poverty line seek help from the Prime Minister’s National Relief Fund. In addition, each state has its own Relief Fund.

Some Indian states have specific schemes. The Karnataka government, for instance, offers Rs 1.5 lakh to Rs 2 lakh as assistance for treatment. “The high costs cannot be borne by many of our patients,” said Prof K C Lakshmaiah, who heads the Department of Medical Oncology at Bengaluru’s Kidwai Memorial Cancer Hospital. “We give letters to help them arrange the finances and donations. Only after the patient has been able to mobilise funds is a transplant carried out.”

Similarly, the Gujarat government offers transplants at half the costs to “only Gujarat domicile BPL patients” at the Gujarat Cancer Research Institute. The scheme is not applicable to “outsiders” even though the hospital gets a large chunk of its 25,000 new cases each year from Rajasthan, Madhya Pradesh, Uttar Pradesh and Bihar, according to Dr Asha Anand, the head of the hospital’s Department of Medical Oncology.

Medical Officer Dr Kirnari Patel said the institute gives estimated cost certificates to “outside patients” who can then apply in their home states for funds. “Those children in Gujarat who are being covered under the School Health Scheme get treatment absolutely free. Only emergency procedures up to Rs 50,000 may be charged from them.”

Non-profit groups often guide families on how to meet their Members of Parliaments to seek help. Other sources tapped by the families include donations from private companies, foundations and individuals. For instance, investors of the HDFC Debt Fund have put in more than Rs 12 crore in the Indian Cancer Society’s cancer cure fund which supports families that earn less than Rs 1 lakh a year.

Sometimes, the families succeed in making appeals for funds but the money takes long to come. Mohammad received Rs 1 lakh from the Health Ministry which was quickly exhausted on his bone marrow biopsy and medicines. The family took loans from relatives and friends. “The little land we had in our village in Uttar Pradesh was also sold off now for Rs 60,000,” said his mother Shagufta.

Their last hope is the Prime Minister’s National Relief Fund. “We have applied for it but it hasn’t come as yet. I hope it comes soon,” she said.

*Names have been changed on request.

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