Book lovers in Maharashtra’s Navi Mumbai city often make a beeline to Assam Bhavan, a second-hand book store. Built as a guest house for government officials from Assam state, the building is also home to hundreds of cancer patients who have traveled from northeast India, along with their families.
When necessary, Assam Bhavan even liaisons between NGOs and patients in need.
India’s northeast has the highest cancer rates in the country, affecting 275 in every 100,000 people. According to the Indian Council of Medical Research, the four districts with the highest cancer rates lie in the states of Mizoram, Arunachal Pradesh, Meghalaya and Assam. The high rates of cancer have been linked to the heavy use of tobacco in these regions.
In the first of this two-part series, we reported on how most of these patients were forced to travel thousands of kilometers across the country in search of treatment. Despite rising cancer rates, care facilities in the northeast remain limited and are often inefficient.
In April this year, 30-year-old Rinku De arrived in Mumbai with his mother Deepti, who was diagnosed with neck cancer, or metastatic squamous carcinoma. A medical representative from Assam, Rinku did what most people around him had done – head to Mumbai’s Tata Memorial Hospital for immediate treatment.
Due to a lack of awareness and access to doctors, most patients in the northeast do not receive an early diagnosis, like Deepti did. This drastically diminishes their chances of survival. In 2012, an estimated 700,000 cancer deaths were reported in the country.
“Most cases reach us only at stage three or four. This causes a tremendous difference in survival,” said Dr Rajesh Dikshit, a professor of Epidemiology at the Centre for Cancer Epidemiology. “Our incidence rates are much lower when compared to countries such as the US, but our mortality rates are not that low.
“That tells you that we are not able to properly treat the patients because they are not being diagnosed on time,” he added.
Oncologists say the chances of survival for people with breast, cervical, head and neck cancers are high when diagnosed early and treated on time. Depending on the kind of cancer, treatment can last five months or longer.
After her arrival in Mumbai, Deepti started undergoing tests at Tata hospital and eventually started her treatment. A month and a half later, however, the family ran out of money. Rinku sent his father home. By then, a bed became available at Assam Bhavan and the family moved in.
“We help patients navigate the language barrier. Some pay Rs 150 (US$2) for a bed, but there are several who can’t afford to and we make arrangements for them with help from other NGOs,” Assam Bhavan’s Joint Resident Commissioner Devashish Sharma said.
A decade ago, he decided to not turn away patients from Assam who were looking for a place to stay. Today Assam Bhavan is a life saver for many like Rinku.
Conversations with patients at Assam Bhavan bring some interesting insights: All know a relative or neighbor with cancer and most choose to travel about 3,000 kilometers for treatment – to Mumbai or the Christian Medical College in Tamil Nadu state.
“We have heard stories of wrong treatment being given to patients in Assam. If we are using all our assets for treatment, we want our family member to get better,” said 26-year-old Pallavi Bora, whose mother has cancer. “At Tata, we are not made to feel small because we don’t have money,” she said. Bora and her mother are also staying at Assam Bhavan.
Rinku and Pallavi’s concerns may as well be valid. An “urgent consideration” of human resource generation is required in the field of oncology in the northeast. “There is a shortage of trained doctors, nurses and technical staff,” Dr Kataki said. Tata hospital produces 70% of India’s oncologists, but the number of seats available for them are a few dozen at best.
“People from the northeast prefer to go outside because even though there are facilities, compared to metros we are still lagging behind in terms of staff and infrastructure. Oncology is a very vast subject. There are different kinds of cancer and we don’t have specialists for all. In Arunachal Pradesh, we have plans to set up a state-of-the-art cancer care center, but there is a lack of funding,” said Nodal Officer for Arunachal Pradesh’s Cancer Control Program Dr Sam Tsering.
Dr Tsering said chemotherapy at their center was free to Arunachal Pradesh natives. The benefit though is available only for Arunachal Pradesh Scheduled Tribes (APST) patients. “Since last year we have treated 455 cancer patients under this scheme,” Dr Tsering said. Assam too has a government scheme called Atal Amrit Abhiyan which provides cashless treatment up to Rs 200,000 (US$2,800) for patients living below the poverty line.
At Tata, too, efforts are underway to scale up cancer-care. The institute is helming the National Cancer Grid – a loose network of cancer hospitals that will allow doctors to share knowledge and facilitate research. The NCG has also tied up with Navya, a startup that uses a website to help patients get second opinions from doctors on treatment plans without having to travel all the way to Tata.
Deepti has now finished her initial treatment but will have to keep returning every few months for follow-up tests and consultations. In the six months that Rinku has been his mother’s primary caregiver, he has lost his job.
But all are set to return to Assam and the family does not regret their decision to travel to an unknown place where few speak their language. “We wanted a cure,” he said.
This is the second in our two-part series on medical migration from northeast India to Mumbai for cancer cures. You can read the first part here.
India needs more cancer hospitals and oncologists to grapple with the influx of cancer patients. We also need communities where cancer patients can reach out to other patients to learn from their experiences and get answers to their questions.