Many poor cancer patients have no recourse but to make their way to the ‘open air ward’ outside Tata Memorial Hospital. An important new study suggests that delay in diagnosis and treatment may be responsible for the rate of cancer deaths in rural India matching urban India, and being twice as high in the least versus most educated segments
One morning in 2009, Shashikanth Upadhyay of Bhind district, Madhya Pradesh, got off the train at Mumbai’s Dadar station and walked to Parel, where he joined a small community living on the footpath. Unlike thousands of migrants, this group was not in the city to seek a livelihood but to access the medical facilities of Tata Memorial Centre, India’s pioneering and premier institute for cancer care.
Upadhyay, who says he smoked several beedis a day, hastily caught the train for Mumbai when a persistent mouth ulcer was diagnosed as serious. Having heard of the heavily subsidised or free treatment for disadvantaged cancer patients, he too set up home amidst the floating population of poor cancer patients and their families on the pavements around Tata Memorial. Displaying remarkable resilience and will to survive they spend months in this “open air ward” awaiting surgery and subsequently completion of radiation or cycles of chemotherapy.
Sia Dulari of Banda district, Bundelkhand, in Uttar Pradesh, was not so prompt. She spent eight months going to various hospitals and clinics in and around Lalitpur before her neck tumour was diagnosed as malignant.
Raja Bapu Joshi, also from Madhya Pradesh, said his hesitation to seek treatment for his oral cancer sprang from the fact that he is a poor labourer who cannot afford huge medical expenses.
The brother of Mohammed Israel Mansuri of Satna district, Madhya Pradesh, said their delay was because of lack of awareness. “My brother had strange leg pains and our villagers said go to a hakim. We never thought of malignancy. Cancer, we believed, was maharajaon ki bimari. It was only after we finally consulted an orthopaedic surgeon that we were directed to Tata.”
The lack of awareness and challenges that Upadhyay, Dulari, Joshi, Mansuri and countless others faced in accessing medical facilities is an indicator of the social inequalities in cancer. The grim consequence of this delay is, perhaps, reflected in the differential mortality rates for cancers in rural and urban areas or the differential mortality rates between educated and non-educated that have now been projected in what has been hailed as a landmark survey ‘Cancer Mortality in India: A Nationally Representative Survey’, Lancet 2012.
Over 130 trained physicians independently assigned causes to 122,429 deaths which occurred in 1·1 million homes in 6,671 small areas that were randomly selected to be representative of all of India. Until now, mortality for specific cancers has been estimated mostly with data from India’s 24 urban population-based cancer registries. There are only two registries representing rural areas.
This survey found that cancer is an important cause of adult deaths in India with more than 70% of fatal cancers occurring during the productive ages of 30-69. The study demolishes the myth that cancer is more prevalent in urban areas, clearly showing that the rural population is equally at risk of getting cancer.
The most significant finding of this survey is: “Contrary to the common perception that cancer kills urban and educated people, we noted that rates of cancer deaths were generally similar between rural and urban areas and about twice as high in the least versus the most educated.” One in 22 men or women aged 30 years alive today in rural India is likely to die of cancer before 70 years of age based on the rates of actual deaths and in the absence of other disorders; in urban areas, the risks are one in 20 for men and one in 24 for women.
Dr Rajesh Dixit of the epidemiology department of Tata Memorial Centre, who was one of the authors of the Lancet survey, elaborates on the urban-rural differentials where deaths are concerned. “What we know from data of the cancer registries is that the incidence of cancer is lower in rural areas but now that we have the data on mortality we see that cancer deaths in rural areas are higher. So there is either the possibility – an unlikely one -- that the incidence of cancer is being under-rated in rural areas, or else -- more likely -- that cancers are being diagnosed at a much later stage in rural areas. There is delay in treatment and therefore case fatality rates are much higher in rural areas.
“This means you have higher incidence of breast cancer in urban areas but they can be detected earlier. Women get early and proper treatment and so they don’t die of cancer to the extent that rural women do. This clearly means that we need more facilities for cancer diagnosis and treatment in rural areas and more access to healthcare.”
This, he says, does not mean that one must necessarily build cancer hospitals in rural areas. One needs to put in place the basics of awareness, education and early detection. “The highest mortality rates are for breast cancers, cervical cancers and oral cancers. Fortunately, all these can be detected early so you need to make women aware that if they notice a lump in the breast or get unusual bleeding they must seek immediate medical attention. Awareness is indeed a very achievable target even among the uneducated. Civil society organisations working in public health can join hands with the government to help spread such awareness and urge women to report unusual bleeding or other symptoms to doctors in primary health centres.”
These PHC doctors can, in turn, refer patients to regional cancer centres. Dr Dixit points out that many medical colleges have facilities for breast cancer surgeries and also cobalt machines for radiation therapy. Creating infrastructure therefore need not mean building super-specialty hospitals.
A paper, ‘Social Inequalities in Cancer’ by A P Kurkure and B B Yeole of the Indian Cancer Society (published in the UICC handbook Cancer Awareness: Prevention and Control: Strategies for South Asia) states that social inequities can be breached with health education and awareness programmes that empower people to take decisions and approach existing healthcare systems for treatment and encourage them to complete treatment and follow-ups. Such programmes require minimal resources and can educate large populations in a short period of time.
After creating awareness, the next stage in rural districts can be the running of screening programmes, says Dr Dixit. Screening for cervical cancers is particularly effective as this cancer has a long natural history, taking over 10 years to develop from mild to moderate dysplasia and then to carcinoma in situ before developing into cervical cancer. Screening for precursors/early stages of cancer can be done by the simple Visual Inspection Technique using acetic acid to observe lesions. Women with suspicious lesions can be sent for further follow-up or treatment if necessary, thereby ensuring there is no loss because of lack of follow-ups. This approach, which is cost-effective and does not require complicated laboratory structures, was adopted by the Tata Memorial Centre Rural Cancer Project at Barshi.
A significant change in downstaging of cervical cancer was achieved: 51% of patients were diagnosed at stage I and 2 in the period 1990-1992 as compared to 38% of patients in the period 1988-89. This shift in downstaging and completion of treatment resulted in a significantly higher five-year survival in 1990-1992 as against the earlier period of 1988-89.
Screening for breast cancers through clinical breast examination (CBE) can be conducted among women in the 35-60 years age-group by trained healthcare workers.
Screening for oral cancers can be done by clinical examination of both men and women by trained healthcare workers and counselling /tobacco cessation advice can then be proffered. The link between oral cancers and low income levels and habits like chewing tobacco or paan has been clearly demonstrated with the Lancet survey. It says: “The very high levels of cancer deaths among illiterate women might represent deaths in a cohort of women older than 50 years who also had the highest prevalence of beedi smoking and tobacco chewing and perhaps other undetermined exposures associated with extreme illiteracy and poverty. Tobacco use is likely to be a strong explanation for the large differences in rates of cancer deaths by education (smoking is a key determinant of social differences in mortality in developed countries). Indeed in men, the differences in oral cancers are consistent with higher prevalence of tobacco chewing in those who are illiterate and the differences in lung cancers are consistent with higher cigarette smoking in educated men. The number of oral cancers was more than twice the number of lung cancers in individuals aged 30-69 years, indicating that the range of fatal cancers caused by tobacco in India differs substantially from that in high-income countries.”
In 2003 the Tata Memorial Centre commissioned the Model Rural Cancer Control Programme in the backward regions of Ratnagiri and Sindhudurg of Maharashtra where there is a high prevalence of common cancers and poor access to healthcare services. Awareness drives and screening programmes were conducted in the districts with Walawalkar Hospital located at Dervan, Chiplun, being selected as the base hospital. Medical officers, primary healthcare workers (men and women) and medical social workers were trained for four to six weeks to carry out screening techniques, coordinate community surveys, plan cancer awareness camps, organise community follow-ups and provide counselling for tobacco cessation.
Awareness programmes stressed on the importance of oral, breast and cervical cancer prevention and the need for support by partners. Fears, embarrassment and myths about cancers and screening were some of the issues that had to be tackled in the community.
Among the important lessons learnt during the programme were that incomplete treatment was due to socio-economic factors like distance required to be travelled for treatment, lack of accommodation facilities, loss of daily wages and so. This, says the report on the project, “gives an insight into the aspect of developing comprehensive cancer care facilities including palliative care facilities under one roof.”
Now that key data is available on higher mortality rates among poorly educated people, there is a compelling need to boost public education campaigns and awareness drives. But, as Kurkure and Yeole point out, “programmes of prevention and early detection will yield desirable results only if they are integrated with programmes directed towards elimination of poverty, illiteracy and restoring social equality.”
(Freny Manecksha is a Mumbai-based journalist)
Infochange News & Features, April 2012