Guwahati: On an overcast afternoon in October, 22-year-old Surabhi Arandhara stood holding her two-year-old son, Arshik Jyoti, as he cried uncontrollably. Arshik was diagnosed with lymphoma in September. Arandhara, a soft-voiced widow clad in an orange saree, choked back tears while telling us her story.
Living in a remote village in Assam's Jorhat district seven hours away, Arandhara and her in-laws barely have any money for the child's treatment. With the help of a woman she fondly refers to as 'bou' (sister-in-law in Assamese), Arandhara was able to get in touch with a regional news channel in Guwahati. The news channel arranged for Arandhara and Arshik's 330-km journey by road from their village to Guwahati. Arshik is now undergoing treatment at the Gauhati Medical College and Hospital. "The doctor has not assured anything yet--whether he will recover or not," she said.
The seven northeastern states of Assam, Meghalaya, Tripura, Arunachal Pradesh, Mizoram, Manipur and Nagaland report a higher cancer burden than the Indian average--overall, India recorded 80-110 cancer cases per 100,000 people according to data for 2012-14, but in its northeastern states, this number varied between 150-200 cases per 100,000, according to the Indian Council of Medical Research (ICMR). The health infrastructure in most of these states is not equipped to treat this caseload, which forces poor patients like Arandhara and Arshik to travel long distances for treatment. Road travel in hilly terrain can be treacherous for anyone in frail health, and most poor patients travel to Assam by bus, train and shared cab, said Sam Tsering, nodal officer for Arunachal Pradesh's Cancer Control Programme.
This echoes the situation in much of the country, as we reported in our award-winning cancer series: Cancer-care facilities are limited to a handful of major cities, and the poorest patients have to make long, arduous journeys to tertiary care facilities for proper diagnosis or medical care. In addition to specialised medical care, cancer patients need clean surroundings to avoid secondary infections, to which they are prone because their immune systems are compromised by treatments such as chemotherapy and radiation therapy. These are not always and readily available, as our reporting from Guwahati showed.
Northeast's cancer burden
When adjusted for age, India's top four districts with the highest incidence of cancer are in the Northeast. Among men, Mizoram's capital Aizawl and the East Khasi Hills district in Meghalaya report the highest age-adjusted cancer incidence rates, while among women, Papumpare in Arunachal Pradesh and Aizawl do. In Aizawl, Papumpare, East Khasi Hills and Assam's Kamrup Urban districts, one in four men are expected to develop cancer at some stage in their lives. In Mizoram and Papumpare district, one in four men and one in five women, respectively, are expected to get cancer. The report does not have disaggregated data for transgender persons.
There is no single cause for the higher cancer rates in northeast India, said Bhabesh Kumar Das, an oncologist at the State Cancer Institute in Guwahati. "It is a multifactorial disease," he said. "Consumption of tobacco and the fermented variety of the raw betel nut [tamul] tops the list here. Some people are also genetically predisposed to the disease."
Patients tend to report at a doctor's at later stages when the symptoms are severe and the disease has progressed, said Subrata Chandra, programme manager at the Assam Cancer Care Foundation (ACCF), a partnership between the Government of Assam, National Health Mission (NHM) and Tata Trusts. Research such as this has shown that primary health centres often fail to correctly diagnose diseases such as cancer, and patients are forced to go to tertiary care facilities for correct diagnosis, treatment and care. "When cancer is detected at an advanced stage, treatment may not be possible, which is why the survival rate is poor here [in the northeastern region]," Chandra said.
To get around this problem, the Arunachal Pradesh government decided this March to start screening people for common cancers--of the stomach, liver, breast and cervix. "Stomach and liver are our priorities because the rates are very high here," Tsering said. But because of the ongoing pandemic, the project did not take off. When it does, it could help save many lives by detecting cancers at early stages, he said.
Northeast ill-equipped, Assam facilities stretched
Many patients like Arshik visit Guwahati for treatment because their own states' healthcare systems are not equipped to handle all cases, and specialised cancer care is available only here.
For instance, the government tertiary care centre in Arunachal Pradesh--Tomo Riba Institute of Health and Medical Sciences at Naharlagun--has basic modalities for surgery, radiotherapy and chemotherapy, but no advanced technologies for specialised cancer care. "Ours is a resource-crunched state and we are dependent on the Centre for funds, and most of the cancer treatment machines are costly," Tsering said.
In Manipur, the lone tertiary hospital is the Regional Institute of Medical Sciences (RIMS) in Imphal, which is trying to scale up its cancer care facilities. "In our state medical college too, we are working to set up a block dedicated to cancer," said V. Vumlunmang, Manipur's principal secretary of health, adding, "It is in the preparatory stage."
Many people go to cities such as Mumbai, Delhi and Chennai for treatment because the northeastern belt has had limited cancer care facilities until lately, said Amal Chandra Kataki, director of Guwahati's Dr Bhubaneswar Borooah Cancer Institute, one of the oldest cancer care centres in the Northeast. People with resources seek treatment at better facilities in a metropolitan city but someone with limited money would go to Guwahati, said Gayatri Gogoi, director of Dibrugarh-based Pratishruti Cancer and Palliative Care, an NGO working to bridge the gaps in the existing cancer care system in Assam. "Guwahati, too, is overburdened now," she said.
Several cancer patients and their caregivers told IndiaSpend that they had taken loans and sold land to pay for treatment. Malabika Boro, 27, and her five-year-old son Montu Boro are one such family.
Montu complained of severe stomach pain and was taken to a hospital in Mangaldoi town, about an hour from their village in Sonitpur district of Assam. He was referred to the Gauhati Medical College and Hospital, where he was diagnosed with blood cancer in March and had to undergo treatment during the lockdown.
Boro had to hire a car twice to ferry her son to Guwahati, 140 km from her village, and back as all transport services were shut. During the lockdown, Boro spent Rs 32,000 on transport alone. Her father had to borrow money and sell one bigha (about 0.33 acre) of their land for Montu's treatment. "The doctors have said that for him to recover, treatment must continue," Boro said.
Assam has two dedicated government cancer hospitals--the State Cancer Institute attached to the Gauhati Medical College Hospital, and the Dr Bhubaneswar Borooah Cancer Institute, a grants-in-aid institute of the Department of Atomic Energy (a unit of Tata Memorial Centre, Mumbai). Both hospitals are in Guwahati.
In 2019, the State Cancer Institute had diagnosed 35,000 new cancer cases while another 30,000 patients were already recorded as having the disease, said B.C. Goswami, director of the State Cancer Institute. Kataki of B. Borooah said patients come from all the northeastern states and also from parts of north Bengal and Bihar. The institute also attends to patients from the neighbouring countries of Nepal, Bhutan, Myanmar and Bangladesh. In 2019, the hospital diagnosed 14,000 new cases in addition to treating 90,000 existing patients.
Not just hospitals, even support facilities such as accommodation, travel and information, barely suffice. The few available are run by non-profits, such as Shishu Ashray Sthal and St Jude India Childcare Centre. "It is a drop in the ocean and there are so many poor children who cannot find a place to live while undergoing treatment," said Mrinmoyee Baruah, Shishu Ashray Sthal's deputy manager. The facility can accommodate 25 children with two primary caregivers each. But, during the pandemic, they have not been able to accomodate more than five.
"The patients require a mandatory COVID-19 test, but it is not necessary for the parents, and because the parents are not tested, I cannot take a risk. I have to keep the ones who are living here safe. At the moment, we have to compromise on the number," Baruah said, adding that as and when the government protocols are modified, they would house more patients.
Both Kataki and Goswami believe that besides infrastructure, the state needs to increase its cancer support workforce and invest in state-of-the-art equipment. As cancer diagnosis involves costly equipment and specialised oncologists, according to Kataki, public health centres are not equipped to deal with the crisis. "Dedicated cancer centres or cancer wards are required to treat patients," he said.
No place to stay
Arshik had been receiving treatment for an undiagnosed illness at Sanjivani Hospital in Jorhat town, two hours from his village, Nakachari. When the small lump on his neck grew, doctors advised the family to transfer him to Guwahati, where he was diagnosed with cancer.
When they arrived in Guwahati in September, Arandhara and Arshik did not have a place to stay, so they rented a room near the Gauhati Medical College and Hospital for Rs 3,000 a month--a daunting amount for a family making a living from running a small shop in a village.
"Most patients who come to Guwahati for treatment are poor. Living in Guwahati for a month or two turns out to be expensive for these patients," added Tsering, Arunachal's nodal officer.
"Cancer diagnosis cannot get done in a short time. It may take months... even a year," said Das of the State Cancer Institute. "Many patients who travel from rural parts of the Northeast often consider discontinuing treatment because they cannot afford to rent a room in Guwahati," he said.
After a month of living in a rented room, Arandhara found out about Deepshikha Foundation's Sishu Ashray Sthal, a Guwahati-based non-profit that works with cancer patients and raises awareness about the disease. Sishu Ashray Sthal is a family-centred residence where children with cancer can live with their primary caregivers for free while undergoing treatment. "We do not know where else we would have gone. At least now, we have a place to live and food to eat," said Arandhara.
Similarly, seven-year-old Kiran Singh from Kakching district of Manipur traveled 12 hours to Guwahati's Dr Bhubaneswar Borooah Cancer Institute for treatment. It was a year ago that he had started facing difficulty walking. "He dragged his feet with each step," said his father Lalchemla Singh, who has never had a job--not unusual in the Northeast where many young men help with the family enterprise. At the Kakching community health centre, Singh was advised to take Kiran to Guwahati's specialist hospitals.
When they arrived at the B Borooah Institute, Singh, who could barely speak Hindi, English or Assamese, was at a loss. A nurse from Manipur helped them figure out the registration and accommodation process. Kiran was eventually diagnosed with a small-cell tumour.
Singh and Kiran stayed at a guest house near the hospital for a few days, where they paid Rs 300-400 per day. Once they ran out of the money that Singh's father had loaned him, they shifted to Shishu Ashray Sthal too.
Most government facilities include the respective states' bhawans, according to Tsering, where the charges are nominal. But not everyone finds a room at these places, which are often fully occupied, he said.
St Jude India Childcare Centre in Guwahati also provides free accommodation, food, counseling, learning and recreational facilities to all childhood cancer patients and their parents. Sherry Marbaniang, who manages the Guwahati centre, said she has had patients from other northeastern states who have told her that had it not been for St Jude's, they would have probably gone back home. "We help patients navigate the language barrier. There are several who cannot afford to pay and we make arrangements for them," she said, adding that many patients can fight the disease if given a real chance.
However, all of these facilities put together cannot provide accommodation to all cancer patients and many are left to fend for themselves, whether they can afford it or not.
What about the government schemes?
Government schemes provide for cashless treatment and a nominal amount of money to pay for a patient's accommodation, but most people are not aware of all the schemes. The Pradhan Mantri Jan Arogya Yojana (PM-JAY) under the Centre's Ayushman Bharat scheme provides in-patient cover for poor families for upto Rs 5 lakh, and the Assam Government's Atal Amrit Abhiyan provides cashless treatment for up to Rs 2 lakh per person.
In Assam, in addition to these two schemes, the Assam Arogya Nidhi (AAN) scheme aims to reach patients not covered under AAA or PM-JAY, and offers financial support of Rs 1.5 lakh that is sent directly to their bank accounts for general and specialised treatment of life-threatening diseases, and of injuries caused by disasters. There is also the Health Minister Cancer Patient Fund (HMCPM), which provides financial assistance of Rs 2 lakh to people living below the poverty line. "For women and children suffering from cancer, we get money from the Tata Memorial Centre and from the Ministry of Health and Family Welfare," said Kataki.
The National Health Mission offers free screening and diagnosis to detect cancer at an early stage, said Lakshmanan S., mission director for National Health Mission in Assam. "A major part of the treatment can also be covered under AAA and PM-JAY."
Yet, these sums often do not suffice for prolonged accommodation, food and repeated travel. And no government facilities house cancer patients and their attendants for free, said Baruah of the Shishu Ashray Sthal.
People living below the poverty line need not spend any money for treatment, said Goswami of the State Cancer Institute. The PM-JAY and AAA are "working successfully", he said, adding, however, "But patients have to look after themselves when it comes to food and accommodation." In their hospital, of 65,000 patients who were treated in 2019, 7,000 patients availed of cashless treatment under both schemes, he told us.
Of the 104,000 patients treated at B Borooah in 2019, about 6,600 benefited from AAA while about 2,100 availed of benefits under PM-JAY, Kataki told IndiaSpend.
About five families told IndiaSpend that they were aware of AAA and PM-JAY but said the documentation process was too difficult. Even though help desks are available, they said, the process is too complicated for someone who cannot read and write with ease. AAA and PM-JAY, however, are at least well known -- state government schemes are not, said Kumar Gaurav, a public health professional in Guwahati, because they are not marketed well by their governments. "Many patients are not aware how to go about it," he said.
What is needed, said Kataki, is for the government, NGOs and the corporate sector to join hands with cancer institutes to provide more facilities such as accommodation to patients and their attendees.
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