 | September marks Childhood Cancer Awareness Month (CCAM). The global childhood cancer community has to express solidarity with the thousands of children and their families who have or continue to battle cancer, create awareness, raise funds, and step up advocacy initiatives for childhood cancer. |
| CanKids KidsCan kicked off CCAM with the theme of “Close The Care Gap: Serving The Underserved.” As part of its advocacy campaign, “Say No to Financial Hardship,” a webinar on “100% Universal Health Coverage for Children with Cancer in India” was held on the first day of September. |  |
WHO envisages UHC as a global scenario where “all people have access to the full range of quality health services they need, when and where they need them without financial hardship.” It covers the full continuum of essential health services, from health promotion to prevention, treatment, rehabilitation, and palliative care across the life course.
WHO has set a global target of 100 per cent UHC by 2030. India is still short of that target. Poor, distressed families of children with cancer sell off their land, and jewelry, and wipe out their savings to meet catastrophic out-of-pocket health expenditures (OOPE). They shell out exorbitant sums for medicines, diagnostics like MRIs, CT scans, and blood tests, surgery, follow-up consultations, besides cycles of chemotherapy, radiotherapy, and the like.
There are other costs like transport, accommodation, and food. Families also have to contend with a loss of income, educational support, and home modifications. All this includes hidden costs like counselling and therapy, nutrition, palliative care, child care for siblings, and legal and administrative support. Such a huge financial drain leads many families to abandon treatment.
WHO has set a global target of 100 per cent UHC by 2030. India is still short of that target. Poor, distressed families of children with cancer sell off their land, and jewelry, and wipe out their savings to meet catastrophic out-of-pocket health expenditures (OOPE). They shell out exorbitant sums for medicines, diagnostics like MRIs, CT scans, and blood tests, surgery, follow-up consultations, besides cycles of chemotherapy, radiotherapy, and the like.
There are other costs like transport, accommodation, and food. Families also have to contend with a loss of income, educational support, and home modifications. All this includes hidden costs like counselling and therapy, nutrition, palliative care, child care for siblings, and legal and administrative support. Such a huge financial drain leads many families to abandon treatment.
 | CanKids has stood firm by distressed poor families of children with cancer. In 20 years, since Poonam Bagai and Sonal Sharma founded it, CanKids has supported about 94,000-95,000 families, largely from lower and upper-lower income groups. To enable children with cancer to “Survive and Thrive,” the organisation has an umbrella patient-centric YANA (You Are Not Alone) programme. Under YANA, the NGO holds the hands of children with cancer and their families throughout the distressing cancer journey. It extends financial and medical support, and support for education, accommodation, nutrition, blood support, and palliative care. Empowerment of survivors is another key programme. |
Today, CanKids partners with hospitals, medical professionals, and state governments to enable access to the best treatment, care, and support. Its reach extends to 141 CanKids Hospital Support Units (CHSUs) spread across 58 cities and 22 states. Each hospital has a holistic CanKids social support team of social workers, teachers, psychologists, nutritionists, patient navigators, parent support group members, nurses, and cancer survivors.
CanKids also has MOUs as knowledge and technical partners with 8 state governments and 16 state projects to improve Access2 Care.
CanKids also has MOUs as knowledge and technical partners with 8 state governments and 16 state projects to improve Access2 Care.
 | The stellar contribution of CanKids to the lives of children with cancer and their families is widely acknowledged. Long-time supporter of CanKids, Dr Vinod K. Paul, Member-Health Niti Aayog, described CanKids as “guided by the highest ethos, service, selflessness, empathy, and integrity.” In his keynote address at the outset of a recent webinar, Dr Paul recalled his association with CanKids since he was a faculty member of the Department of Pediatrics and Head of the Department at All India Institute of Sciences (AIIMS). Reminiscing on those days, he says he was accustomed to seeing the CanKids team hard at work with families in the hospital’s corridors, waiting halls, and so on. |
It was also not an unusual sight to see them by the roadside, patiently awaiting transport or soothing families and children with cancer. “I salute you Poonamji and the Cankids team for all the work you have done,” said Dr Paul.
Dr Paul described UHG’s twin pillars as access and access to health care without financial hardship. The last decade, he pointed out, had seen the country making enormous strides on both fronts. Life expectancy has risen since Independence because of overall development, access to health services, disease control, and so on.
Out-of-pocket expenditure on health services—curbing which is a key step for moving towards UHC—has consistently declined. In proportion to the total health expenditure, in 2013-14, OOPE was a whopping 63 per cent with the rest supplemented by government spending. That figure improved to 47.1 per cent in 2019-20. The next year it was down to 41-42 percent.
There is a sharp decline in OOPE to 37 per cent in 2021-22. Now the government is set on a further reduction of OOPE to 10 percent.
But is India going to achieve that magical figure and achieve the WHO target of 100 per cent UHC by 2030? Dr Paul is optimistic. In the space of tertiary care, there has been a multiplication in the number of AIIMS. Medical colleges and doctors have increased. While the setting up of infrastructure appears favourable, there continues to be a need for doctors, nurses, oncologists, and paediatricians. More cancer beds are needed.
Ayushman Bharat is the flagship programme of the Indian government to achieve the vision of UHC. Ayushman Bharat has two components—health and wellness centres and Pradhan Mantri Jan Arogya Yojana (PM-JAY).
Ayushman Bharat PM-JAY, the largest health assurance scheme in the world, aims at providing a health cover of Rs. 5 lakhs per family per year for secondary and tertiary care hospitalization to over 12 crores of poor and vulnerable families (approximately 55 cr beneficiaries) that form the bottom per cent of the Indian population.
The cashless service encompasses around 1,929 procedures covering all treatment costs such as drugs, supplies, diagnostic services, physician's fees, room charges, surgeon charges, OT and ICU charges etc. Cancer coverage through PM-JAY reduces OOPE for cancer patients. Though the government scheme is meant to serve only hospitalisations, it makes daycare for cancer an exception.
“The coverage does include cancer but I appreciate that we are not perfect for every type of cancer and what is required for covering expenses related to cancer therapy,” acknowledged Dr Paul.
Dr Paul had out-of-the-box suggestions for cancer management. He pointed out that cancer doesn’t need to be treated solely by oncologists. A surgery department in a medical college should be equipped to deal with a significant proportion of common cancers, including those of children.
An immediate game changer would be to, in his words, “demystify at least part of cancer therapy” to reduce the burden on superspecialists. He visualised a scenario where after the initial diagnosis, chemotherapy could be provided closer to home in district hospitals or nursing homes covered through PM-JAY. Radiation could be planned by radiation oncologists but implemented by a different team.
A strengthened primary health centre should be able to tackle minor complications that may arise after cancer therapy. Telemedicine too should be explored to improve detection, the reach and the continuum of health care for cancer.
Regarding financial protection for cancer treatment, Dr Paul pointed out that indirect costs can be very high. He said that in distant states like Mizoram and Meghalaya where infrastructure for cancer treatment lags, patients have to be sent by treating teams to other states.
“How do we offset the OPPE of the family on transportation? How do we offset the transportation even from one district to the other?” he questioned.
He referred also to Niti Aayog’s finding of the “missing middle” segment of the population. They are defined as people who are not covered by a government insurance scheme because they are not poor enough to be beneficiaries, at the same time they are not wealthy enough to purchase private insurance schemes.
A family of four with a monthly income of Rs 20,000 cannot afford to pay a premium ranging from Rs 25,000 to Rs 50,000. It is this large segment of the population who also needs financial protection, particularly for catastrophic situations like cancer.
Ultimately, Dr Paul stressed the need to make primary health care a priority. He called on all key stakeholders to help in this endeavour.
Dr Paul described UHG’s twin pillars as access and access to health care without financial hardship. The last decade, he pointed out, had seen the country making enormous strides on both fronts. Life expectancy has risen since Independence because of overall development, access to health services, disease control, and so on.
Out-of-pocket expenditure on health services—curbing which is a key step for moving towards UHC—has consistently declined. In proportion to the total health expenditure, in 2013-14, OOPE was a whopping 63 per cent with the rest supplemented by government spending. That figure improved to 47.1 per cent in 2019-20. The next year it was down to 41-42 percent.
There is a sharp decline in OOPE to 37 per cent in 2021-22. Now the government is set on a further reduction of OOPE to 10 percent.
But is India going to achieve that magical figure and achieve the WHO target of 100 per cent UHC by 2030? Dr Paul is optimistic. In the space of tertiary care, there has been a multiplication in the number of AIIMS. Medical colleges and doctors have increased. While the setting up of infrastructure appears favourable, there continues to be a need for doctors, nurses, oncologists, and paediatricians. More cancer beds are needed.
Ayushman Bharat is the flagship programme of the Indian government to achieve the vision of UHC. Ayushman Bharat has two components—health and wellness centres and Pradhan Mantri Jan Arogya Yojana (PM-JAY).
Ayushman Bharat PM-JAY, the largest health assurance scheme in the world, aims at providing a health cover of Rs. 5 lakhs per family per year for secondary and tertiary care hospitalization to over 12 crores of poor and vulnerable families (approximately 55 cr beneficiaries) that form the bottom per cent of the Indian population.
The cashless service encompasses around 1,929 procedures covering all treatment costs such as drugs, supplies, diagnostic services, physician's fees, room charges, surgeon charges, OT and ICU charges etc. Cancer coverage through PM-JAY reduces OOPE for cancer patients. Though the government scheme is meant to serve only hospitalisations, it makes daycare for cancer an exception.
“The coverage does include cancer but I appreciate that we are not perfect for every type of cancer and what is required for covering expenses related to cancer therapy,” acknowledged Dr Paul.
Dr Paul had out-of-the-box suggestions for cancer management. He pointed out that cancer doesn’t need to be treated solely by oncologists. A surgery department in a medical college should be equipped to deal with a significant proportion of common cancers, including those of children.
An immediate game changer would be to, in his words, “demystify at least part of cancer therapy” to reduce the burden on superspecialists. He visualised a scenario where after the initial diagnosis, chemotherapy could be provided closer to home in district hospitals or nursing homes covered through PM-JAY. Radiation could be planned by radiation oncologists but implemented by a different team.
A strengthened primary health centre should be able to tackle minor complications that may arise after cancer therapy. Telemedicine too should be explored to improve detection, the reach and the continuum of health care for cancer.
Regarding financial protection for cancer treatment, Dr Paul pointed out that indirect costs can be very high. He said that in distant states like Mizoram and Meghalaya where infrastructure for cancer treatment lags, patients have to be sent by treating teams to other states.
“How do we offset the OPPE of the family on transportation? How do we offset the transportation even from one district to the other?” he questioned.
He referred also to Niti Aayog’s finding of the “missing middle” segment of the population. They are defined as people who are not covered by a government insurance scheme because they are not poor enough to be beneficiaries, at the same time they are not wealthy enough to purchase private insurance schemes.
A family of four with a monthly income of Rs 20,000 cannot afford to pay a premium ranging from Rs 25,000 to Rs 50,000. It is this large segment of the population who also needs financial protection, particularly for catastrophic situations like cancer.
Ultimately, Dr Paul stressed the need to make primary health care a priority. He called on all key stakeholders to help in this endeavour.
