After long bouts of fever in 2012, when 32-year-old Shabnam got her blood tested, the local pathologist in her hometown near Kolkata looked at the reports and asked her parents to take her to Mumbai.

Shabnam’s brother, who works as a senior manager in a coffee chain in Mumbai, sought an appointment at a reputed private hospital in the city. “Once they told us it was cancer, we rushed to Tata Memorial,” said Shabnam’s father. “It was earth-shattering.”

Shabnam had acute myeloid leukemia, a condition where abnormal white blood cells grow rapidly, accumulate in the bone marrow and interfere with the production of normal blood cells.

From July till November 2012, she was given chemotherapy though her father now forgets exactly how many cycles were administered. Six months later, the disease relapsed. Doctors said Shabnam needed a bone marrow transplant.

This time, she was sent to the Advanced Centre for Training, Research and Education in Cancer, a satellite institution of the Tata Memorial Hospital, built in the foothills of Kharghar outside Mumbai. ACTREC was created after it was realised that the hospital was losing too many patients to post-transplant infections. A new centre in a relatively cleaner and less crowded environment would help in better infection-control, it was felt, apart from reducing the patient burden on the main hospital.

But soon the new centre itself was inundated with patients.

Shabnam found a donor in her brother whose stem cells matched. But there were no empty beds in ACTREC. She was put on a waiting list. The delay meant rising distress and mounting costs.

“I pleaded with them that my money was all exhausted,” said her father, a retired government officer.

Four months later, Shabnam was wheeled in for the transplant. But she developed complications, and two months later, succumbed to the infections. “The treatment cost us almost Rs 45 lakh,” said her father. “I spent all my pension and savings on her. Yet I could not save my daughter.”

Growing rush

In November last year, a single row of seats lined the perimeter of the room where patients and attendants awaited their turn for a consultation at ACTREC’s Department of Hematology, which deals with cancers of the blood. By April, an additional tier of seats had been added. Today, even that is not enough. Most attendants wait outside the room, sitting on benches provided by the hospital, or stand inside, cramming the space.

ACTREC is not the only hospital witnessing a steady rise in patients seeking treatment for blood cancer.

Crowds running into thousands jostle for space from morning to evening on weekdays at the Institute Rotary Cancer Hospital of the All India Institute of Medical Sciences and the Hematology Department of the Christian Medical College Hospital in Vellore, Tamil Nadu.

A majority of the patients come for bone marrow transplants, an advanced form of treatment where a patient’s diseased bone marrow is replaced by healthy stem cells. It is used to treat malignancies as well as non-malignant blood disorders like thalassemia, aplastic anemia and bone marrow dysplasia. Such is the demand for the transplants that patients seeking them have to wait for months.

In June, the day I met Dr Manoranjan Mahapatra at AIIMS, he had just given his latest date for a transplant to a patient – May 2016.

Cancers of the blood

India has the third highest number of hematological cancer patients in the world after the US and China, according to GLOBOCAN 2012, a report prepared by World Health Organization’s International Agency for Research on Cancer.

Hematological cancers mainly cover Hodgkin’s and non-Hodgkin’s lymphoma (blood cell tumours), various types of leukemias (blood cancers) and multiple myeloma (cancer of plasma cells).

Among the top 20 cancers affecting the Indian population in 2012, leukemia ranked at nine. It affected an estimated 32,000 men and women in the country that year and caused 26,000 deaths. Non-Hodgkin’s lymphoma, meanwhile, ranked 13, with 23,000 fresh cases and 16,000 deaths reported.

These numbers are most likely underestimates. Said Dr Sushant Mittal, Consultant, Medical Oncology at Artemis Hospital in Gurgaon: “Data collected in India is inadequate. During my practice at Artemis, no government official has ever approached us seeking how many incidents, how many deaths or any other data. I am not sure if the hospital sends it to the registry on its own.”

A rise in transplants

While there is no data to conclusively show that the incidence of blood cancers is rising in India, the number of bone marrow transplants being performed in hospitals is steadily increasing each year.

Between 1986 and 2007, an average of 45 transplants were carried out each year at CMC Vellore, according to Dr Mammen Chandy, who headed its Department of Hematology for two decades. The number rose to 100 transplants and is now touching about 200 transplants each year.

Dr Chandy attributes the rise in transplants partly to an increasing rate of detection. “More people are being diagnosed now of hematological cancers,” he said. Another reason for the rise is that senior oncologists see transplant as a “curative modality”. Simply put, more physicians now refer patients for a transplant.

One of India’s pioneering oncologists, Dr VP Gangadharan, former Director of Regional Cancer Centre, Thiruvananthapuram, Kerala, says that access for antibiotics and other drugs for leukemias has improved. The percentage of patient infections and complications has gone down which has made doctors “more confident of back support”.

The rise in transplants also reflects the increase in the number of centres offering transplants. “Earlier, there were very few such centres,” said Dr Lalit Kumar, who heads the Institute Rotary Cancer Hospital at AIIMS, and is popularly referred to as the “Father of Medical Oncology” in India. “But many more centres have started their BMT [bone marrow transplant] programmes, so there are more trained doctors now who can do BMTs.”

The waiting lists

Despite the increase in centres and doctors, the waiting lists at all major transplant centres in the country is growing.

The waiting period at ACTREC is particularly long, says Dr Navin Khattry, who heads its bone marrow transplant unit, because more people want to get treatment at the centre itself. “That’s because we have our own funding models where patients who need a transplant but cannot afford it can also get treatment. NGOs and the hospital help arrange funds.”

What if a patient becomes critical in the waiting period?

“If a patient becomes critical, BMT is of no use,” said Dr Khattry. “The risk may be higher in some patients but they have to wait as per the list. If we have a slot vacant due to any reason, a critical patient can be taken up earlier for a transplant. But one has to be fair in this procedure. Because if some patient is being taken up first, the others in the waiting list might become critical due to loss of time.”

Doctors make an informed decision on which patient is to be taken up first for a transplant based on various criteria like age and previous treatment history. A patient who has responded well to chemotherapy “will benefit more from the BMT than one whose disease is active,” said Dr Mallik. “Chances of infections and transplant-related complications such as GVHD – Graft Versus Host Disease – are higher in an active-disease patient.”

Difficult wait

For scores of cancer patients, the waiting list means increased rounds of chemotherapy, with all its ravaging side effects.

Aravind Sundar, a lymphoma patient who underwent a bone marrow transplant at ACTREC almost two years ago and is now studying in UK, said he had to wait for 3-4 months for his turn on the list. “At that time, I remember not liking that I had to have more sessions of chemo just because they [the hospital] didn’t have slots [for the transplant],” he said. “But in retrospect, I am sure they were making the best of what they had.”

Families of cancer patients find the waiting period stressful as they fear losing their loved ones.

Naseema claims her mother’s condition “deteriorated” during the waiting period at AIIMS. “Thankfully, she was taken up for BMT within two months and is doing better now,” said the 24-year-old. “But the situation is bad. The patient rush is a lot and even for basic things, such as a PET scan [a key scan that helps diagnose the extent of disease in the body], AIIMS had waiting lists of 4-6 months. But what could we do? We had to wait.”

A diligent student, 13-year-old lymphoma patient Gaurav wanted to recover and get back to school in his hometown in Madhya Pradesh. But the delay in his transplant not only disrupted his studies but also the way his family lived. “We had to leave our younger son with relatives,” said his father. “Back home, our business suffered a lot as I had to be constantly in Mumbai.”

The waiting lists appear brutal but they might still not reflect the actual requirement for bone marrow transplants. Dr Mathews believes India is meeting “less than one percent” of the country’s demand for transplants.

“Every big city in the United States has 2-3 BMT centres,” he said, which means about 150-200 centres across the country. In comparison, India, with five times its population, has just a scattering of BMT centres. “There is no way Indian centres can meet the actual demand.”

This is the first part in a series on blood cancer care in India.