By Dr Girish Ingle

Cancer affects children throughout the world. It is estimated that every year about 1,60,000 children are diagnosed with cancer globally. Around 80% of these are from developing countries. Unfortunately, these children do not get effective treatment due to difficulty in accessing specialised cancer care services. Therefore the disease is often detected at later stages and, in some cases, not at all. As a result, there is high mortality among children with cancer despite the fact that 85% of childhood cancers are treatable and curable if detected in early stages.

Today, medical and health systems have advanced in many aspects, so it is possible a defeated, sickly child turn into a smiling healthy one with just a few months of treatment. Sadly, in India, only 15-20% children with cancer are able to receive the treatment. The lack of treatment is mainly due to lack of diagnosis and access to treatment.

A fatal triad of inaccessibility: cancer, financial burden of treatment and poverty

The treatment for cancer is very expensive. According to the National Sample Survey Organisation, around  6-8%  of  India’s population  does not  seek  care  due  to financial  reasons.  Apart from the burden of direct cost of treatment, there is huge indirect cost involved. For example, cancer care hospitals are located far away from the patient’s home and some families end up travelling more than 1000 kilometres to the city.

Migration to a new city makes it difficult for families to find living space and overcome language barriers. This temporary migration causes a loss of livelihood of the parents which makes them more vulnerable to comply with treatment. To maintain a family back at home with nobody to take care of the siblings of the children undergoing treatment, and also to sustain a life with psychological and financial stress in a entirely new city is a big challenge for families to continue the treatment, which lasts for at least 6 months. Under these circumstances, families leave the treatment in halfway and return to their hometown with the untreated child. This not only proves fatal for the child die but also push the family in impoverishment and below poverty line.

Around 24%  of all hospitalised cases  get  impoverished  each  year  (Peters  et  al,  2002).  World Development  Report  (2004),  stated that medical  care  remains  the  third  biggest cause  of impoverishment  in India and  each  year  an  additional  3.7%  of  the population  is  impoverished  due  to  medical  causes  (van  Doorslaer,  2006).  Dev and Ravi  (2008), in their study shows  that  the  total poverty  ratio  in  India increases  from  28  to  36  percent  (for  year  2004-05)  if  private  expenditures  on education and health are included.

The question is, why does this situation occur? Why don’t these children get treatment? Why is their constitutional ‘Right to Life’ being denied? The answer lies in the inability of the healthcare services in India to meet the demands of the population. Health is a state subject and the state must ensure access of treatment to every individual however, the state is unable and not equipped to provide the healthcare to these cancer children. The reason being is a paucity of the equipped healthcare facilities and specialized Paediatric Oncologists in country.

The Government of India has started a National Cancer Control Programme (NCCP) and established 27 regional cancer care centres throughout country. But this number is very little compare to the needs and density of the population in India and exists only in big cities. Mumbai has 7 medical colleges. The diagnosis and treatment of cancer is centralized in certain hospitals. There is only one such hospital in Mumbai which is totally dedicated to treat the cancers including childhood cancers. This particular hospital is catering to the patients not only from Mumbai or Maharashtra state but to the patients from all over the country. As a result the patient load is too high and thus the patients have to wait a long time till their turn comes. This becomes an impediment in their healthcare. Other hospitals, which are run by profit-making and non-for-profit agencies are not affordable to the patients. Very often, parents are not aware of such facilities. Lack of social security schemes and their poor implementation also contributes to the non-diagnosis and non-treatment of childhood cancers. The Rajeev Gandhi Jeevandayi Yojana is a 100% state-run scheme that provides free super specialty surgical treatment for cancer and other ailments to people who fall below the poverty line or are economically backward, but most patients do not use this scheme, because they are illiterate and ignorant of it.

NCCP: A futile commitment

The National Cancer Control Programme (NCCP), which envisaged early detection and prevention of cancers, has been unsuccessful due to its poor implementation and poor referral at peripheral healthcare centres. Lack of organised screening programmes for childhood cancers in the country and focus of cancer centres only on opportunistic screening services is responsible for the late detection, late diagnosis and treatment and increased mortality and morbidity in cancer patients. NCCP in its single form will not be able to make changes in current situation. There is an urgent need of creating holistic approach through multisectoral engagement.

The Union for International Cancer Control (UICC) also advocates for a commitment to be the ‘voice of cancer’ in making a cancer as a public health agenda by involving different health disciplines (research, clinical services, health promotion, cancer survivors, pharmaceutical industry, etc) and sectors outside of health (e.g., World Bank, World Economic Forum, private sector, development agencies, World Trade Organization) to deal with this public health scourge.

Even though cancer is not included in the United Nations health agenda of ‘Millennium Development Goal’ (MDG), approximately 70% of the world’s cancers patients will be in the developing countries by the year 2020 (WHO). There are also very close linkages between poverty, cancer and achievement of MDG. If the disease is not controlled at early stage then it will have huge implications on achievement of MDGs.

Therefore, it is imperative for the state and other stakeholders to form an agenda to tackle the issue of childhood cancer on the global agenda. A strong preventive healthcare system, early detection and strong referrals, and excellence centres for multidisciplinary treatment, rehabilitation and research in childhood cancers, are what we need. This will ensure universal access to all children diagnosed with cancer.

Dr Girish Ingle is the Head of the Health Department at Mumbai Smiles