27 regional hubs, 300 hospitals, yet patients journey to 1 Mumbai Cancer Centre

At any point in time hundreds of patients are seen waiting for a chance to consult cancer specialists at Tata Memorial Hospital File picCarrying thin plastic bags full of medical reports about 30 cancer patients queue up outside Pankaj Chaturvedis office on the second floor of the Homi Bhabha Wing of the 76yearold Tata Memorial Hospital in the central suburb of Parel Some are too weak to stand So they sit down sometimes on the floor As a receptionist tries to maintain order in the overcrowded lobby the volume of patients and attendantsndashmostly relativesndashswellsChaturvedi is a specialist in headandneck cancer the most common kind in India accounting for a quarter of all registrations at Tata Memorial which is run by the central governments Department of Atomic Energy The wing from which he works was built to accommodate private patients those who pay the actual costs of medical care but he examines everyone 60 of patients fall in what is called the general category which allows them to get free or highly subsidised treatment depending on whether they live below the poverty line or just above itWith Indias cancercare facilities limited to a handful of major cities the poorest patients make long desperate journeys to Tata Memorial either for a proper diagnosis or medical care as the first and second part of this series explained Today in the concluding part we explore how Tata Memorial Hospital is coping with a flood of cancer patients and study the Indian governments cancercare plans for the countrys poorest patientsIt takes up to eight hours to see a doctor in the general outpatient department OPD and here at Chaturvedis office the wait is less but still up to three to four hours according to patientsWe do not operate and treat less complex cases we send them back Chaturvedi told IndiaSpend in between examinations I may have sent 30 of our patients back to their native place There are facilities back there that can treat these cases but that treatment is provided after an endorsement from Tata Memorial he saidIndia has one oncologist for 1500 patients in the US it is one per 100 and in the UK one per 400 and they are concentrated in about eight metropolitan cities according to 2015 study by the consulting firm Ernst and Young Mortality rates are higher than the West because of late diagnosis and treatment and the prevalence of cancer is likely to rise 70 over the next 18 years as Indians age become more obese smoke drink more liquor breathe polluted air and drink polluted waterWhile the government has changed priorities of the 50yearold national cancer programme from tertiary treatment to early diagnoses some experts question the implementation and financing of the changeover Noncommunicable diseases such as cancer now account for 60 of all deaths in India but received less than 3 of the national health budget in 201718 as we explain later The result is that cancer awareness and prevention is lowChaturvedi attributes the particularly high burden of headandneck cancer to the Indian affinity for cigarettes beedis and chewing tobacco India had 810000 tobacco users and 286 of adults above the age of 15 used tobacco in any form according to Global Adults Tobacco Survey GATS 201617 Life for head and neck cancer patients is severely affected because the cancer affects their ability to speak and eatEvery day the headandneck cancer department sees 300 patients in the OPD and conducts seven surgeries in almost an assembly line setup each of which typically lasts three to four hours Most patients do not respond well to radiation and chemotherapy and surgery is usually required Very few institutes offer surgery which should be the first line of treatment for oral cervical breast cancer the top cancers in India and which occur in the poorest and instead offer only radiotherapy said Chaturvedi So patients end up coming hereWaiting time for surgery can stretch to one month in an overstretched hospitalTata Memorial is the workplace of choice for some of Indias best oncologists it has the countrys best equipment and is wellfunded It is also overstretched according to its administrators treating about 65000 new patients and 450000 followup patients every year much over capacityMost of the hospitals other 11 departments appear as pressured as the headandneck cancer department and the 11 OPDs are always full Patients assigned for surgery have to wait up to one month for their turn during which their disease progresses and adds their cost of livingThese pressures are manifest in the form of patients who live on the pavement outside the hospital Each of 51 streetdwelling patients IndiaSpend surveyed had spent an average of three months either waiting for diagnosis or getting medical care Most had made long journeys often crosscountry with 41 from Bihar and 17 from Uttar Pradesh eight of 10 were daily wage labourers 44 were jobless when cancer struck and 92 had a grade VII education or lessWhat most had in common was that they had ended up on footpaths outside Tata Memorial after seeking treatment in other government or private hospitals although some came here when physicians or doctors urged them toAll district hospitals offer cancer care so why the flood in ParelIn an ideal scenario tertiary care centres such as Tata Memorial Hospital should not see this flood of patients since all district hospitals in India offer some sort of chemotherapy and surgery and 14379 government medical colleges nationwide have radiation facilities India has a national cancercontrol programme with 27 regional cancer centres and 300 other multispecialty hospitals treating cancer The National Cancer Institute at Jhajjar Haryana with a budget of Rs 2035 crore in 2017 has the largest budget of any cancercare centre in IndiaThe reason they flock to Tata Memorial is apparently reputation and desperation our conversations with patients revealed It is also a reflection of the current horizontal healthcare delivery systemndashwith its primary health centres and others above itndashAnil DCruz director of Tata Memorial told IndiaSpendWhat we really need is a diagonal healthcare delivery system to look at diseases individually along with normal health delivery said DCruz For instance cancer often has similar symptoms as other diseasesndashsuch as cardiovascular afflictions or diabetesndashand diagnoses should be made earlier at secondary health care centresOnly cases that require specialised treatment should ideally come to tertiary care centres such as Tata Memorial as Chaturvedi the headandneck cancer specialist said explaining why his department returned a third of cases to regional cancer centresYet despite a national cancer programme that is now half a century old Tata Memorial is a hospital of both last and first resortFrom tertiary treatment to primary diagnosis cancer care is trying to changeThe national cancercontrol programme may be 50 years old but 68 of Indian cancer patients die before five years of diagnosis In contrast 60 of cancer patients survive beyond five years of diagnosis in North America and EuropeThe disparity in survival is more pronounced in rural areas which is why even though the incidence of cancer in rural areas is half that of urban areas mortality rates are similar in both urban and rural areas suggesting that patients in rural areas are at higher risk of dyingIndia does not have enough oncologists and those available are concentrated in about eight cities as we said When the national cancer programme was launched in 1975 it focussed on equipping tertiary cancer institutes with infrastructure Since 1984 the focus changed to prevention of cancer and early detection moving later to developing district cancercare centresA national cancer registry was established in 1984 by the Indian Council of Medical Research to record cancer incidence and patterns using data from 21 populationbased registriesndashwhich cull data on all new cases of cancer occurring in a welldefined populationndashand six hospitalbased registries which record cancer cases in particular hospitalsCancer is part of the national programme for the prevention and control of cancer diabetes cardiovascular diseases and stroke NPCDCS launched in 2010 and being implemented under National Health Mission NHM with districtlevel interventions in 36 states and union territoriesFor a long time cancer care was a topdown effort focussing on treatment and tertiary care ignoring screening early detection or prevention in primary care That focus appears to be changing as the government tries to do more than it has beforeCancer has been made a health priority but the money must followThe national cancer programme now includes health promotion activities opportunistic screening and as the effort to control noncommunicable diseases NCDs includes oral cervical and breast cancersBy June 2017 419 District NCD Clinics and 2116 CHC NCD Clinics were set up With operating guidelines drafted and published cancer screenings may soon begin across Indias districtsNot everyone is convinced of the approachIndia has a NRHM national rural health mission hangover said Subhojit Dey part of the Global Burden of Disease project and cochairman of the Cancer Interest Group at Delhis Public Health Foundation of India PHFI an advocacy Maternal and child health and communicable diseases have been Indias priority until now The fact that cancer was added to the NPCDCS in 2009 a year after guidelines were issued indicates the priority given to cancer said DeyAlthough noncommunicable diseases were responsible for 60 of deaths in India in 2014 they received no more than 265 Rs 1255 crore of the 201718 health budget Rs 47352 crore 44 of the budget has gone to the NRHMSome experts argue that clubbing cancer with other noncommunicable diseases may not be a good idea because cancer treatment is far more complex and expensive and screening for cancer can require more training than screening for diabetes or hypertensionThere are more than two dozen types of cancers which need specialists at the primary treatment stage said Preet Dhillon associate professor and epidemiologist at the PHFIs Centre for Chronic Conditions and Injuries There is also a different stigma attached to cancer which requires a different degree of sensitisationHowever Dhillon said screening for cancers as part of the national programme is a good beginning indicating priority to cancer There are still many questions about cancer policy but without doubt we have come farther than ever before she saidThe Indian government is also planning an additional 20 state cancer institutes and 50 tertiary care cancer centres The National Cancer Institute at Jhajjar Haryana will be open by August 2018 and will be Indias bestfunded public cancercentre with a budget of Rs 2035 crore said G K Rath head of radiotherapy at All India Institute of Medical Sciences and the doctor appointed to head the institute It will conduct translational researchndashpractical application of research findingsndashon cancers that affect Indians said RathMost cancer deaths occur because a majority of Indian patients are at an advanced stage of the disease when they seek care With better screening and awareness and robust cancer treatment at government institutes these deaths can be prevented said RathA national cancer grid holds promise allows oncologists to collaborateCancer care in India does not follow standard protocols so a national cancer grid NCG established in 2012 holds promise The Grid is supposed to link cancer centresndashprivate and publicndashnationwide so they follow uniform standards of care based on evidencebased management guidelines and do collaborative researchCurrently 110 centres 40 of them private are part of the NCG treating 600000 patients between themndash60 of Indias cancer burden Apart from setting guidelines these institutes also expertise and do collaborative research togetherOver the last six months at a predetermined time 120 to 150 cancer experts from across India log on to the NCGs platform on what they call a virtual tumour boardmdasha video conference where they discuss complex casesThis should also make cancer treatment more affordable A large amount of money that a patient pays is coming to a tertiary care centre and patients spend money in staying for a few days and travelling back and forth said C S Pramesh head of thoracic surgery at Tata Memorial Hospital and coordinator of NCG This can be prevented by providing the same level of care at the patients doorstepsBut this is yet in the future For now cancer care is driving patients deeper into povertyHigh cost catastrophic expenditure drives cancer patients to povertyIn the first part of this series we told you the story of army aspirant Arvind Kumarndashan eye eaten away by cancerndashwho had seen six doctors in five cities and travelled 2200 km before landing up on the footpath outside Tata MemorialKumars story illustrates the failures of the current healthcare system especially the governmentrun systemIt is known that 7 of Indian households are pushed into poverty due to catastrophic health expenditure an economic term for a familys health expenses when they exceed by 40 the familys ability to payDespite the fact that 25 of Indians are covered either by state or private insurance having health insurance does not reduce either outofpocket expenditurendashmoney paid by households from savings for healthcarendashor impoverishment due to a health crisis according to a 2016 analysis by Brookings India a think tankOutofpocket expenditure accounts for more than 67 of healthcare costs in India and includes outpatient expenses not covered by healthinsurance programmesCurrently most cancer patients in India as we said die within five years of diagnosis with poorer patients as research shows less likely to survive the disease than richer ones After treatment there is no social security for patients to fall back onThose who survive may not be able to work after treatment and their families continue to spend more money on their medicines In the second part of this series we calculated a Rs 55000 loss in income for the patient and his or her attendant usually a relativeAlthough it is more expensive and spurs catastrophic expenditure the private sector accounts for 78 of all outpatient visits and 60 of inpatient stays for cancerThe reason why patients seek care at private institutes despite the high cost is the quality said the PHFIs Dey Quality of care in private institutions is much better than government ones It is a tough call to makendashto look for affordability or for qualityThis rush to the private sector is made worse because the governments programmes to finance healthcare languishndasheither because few patients know about them or procedures to use them are complexUnderutilised Government healthcarefinance schemesThe government provides a variety of financial assistance to patients living the below poverty line BPL for lifethreatening diseasesRashtriya Arogya Nidhi RAN or National Health Fund allows BPL patients to seek treatment at any of superspecialty hospitals upto Rs 200000Health Ministers Cancer Patient Fund HMCPF uses a corpus Rs 100 crore as fixed deposit the interest is used to provide financial assistance to BPL patientsState Illness Assistance Fund SIAF where 50 of the funds are provided equally by the state and the Centre selected BPL patients can get up to Rs 150000Health Ministers Discretionary Grant HMDG which allows patients earning less than Rs 125000 annually to get assistance of a similar amountSwagata Yadavar is an analyst with IndiaSpend