The Challenge of Childhood Cancer and Bone Marrow Transplant in India

Dr Sunil Bhat Senior Consultant and Head Pediatric Hematology, Oncology and Bone Marrow Transplant Mazumdar Shaw Cancer Center, Narayana Health City Bangalore, India
 

In developed countries, childhood cancers are one of the leading causes of death in children, second only to accidents. However, in developing countries like India, infections like malaria, tuberculosis; diarrheal diseases, neonatal mortality etc. are the leading causes of death in children. With improved sanitation, immunization, and access to basic medical care, the under-5-year mortality rate in developing countries continues to drop and thus pediatric cancers become increasingly important. It is estimated that 80%-85% of pediatric cancer cases occur in the developing world, India by virtue of its large young population harbors a good proportion of these. Treatment of childhood cancers have been success story in the treatment of cancer with cure rates approximately 70-75%, with rates reaching as high as 90-95% in some cancers. This high cure rate has not been reproduced in developing countries including India, with rates of cure as low as 10-20% in some reports.

Some of the challenges faced in India in treatment of childhood cancer are :
  1. Late diagnosis and referral in advanced stages.
  2. Social taboos associated with cancer diagnosis and myth that cancer is in curable. This leads to families not seeking health care.
  3. Non-affordability of the treatment cost. Most of the costs have be covered “from the pocket” with limited support from insurance and government support.
  4. Limited number of pediatric cancer care units with medical professionals trained to look after childhood cancer patients.
  5. Families may have to travel long distances to reach the cancer centers. Most of the cancer treatments last months and families may not be able to live that long near the cancer center.
  6. Very high treatment abandonment rates due to various reasons.
  7. Treatment protocols adopted are taken from developed countries, which may not be suitable for Indian children.
  8. Lack of appropriate supportive care and blood products to support these children in event of treatment related complications.
  9. Insufficient number of trained pediatric oncologists and nurses to look after these children.
  10. Poor nutritional state of the children affected by cancer which translates in poor tolerance to chemotherapy and ultimately poor outcome.
What can be done to improve the lives of children living with cancer in the India?
  1. Establishment of a more and more pediatric cancer unit where needy children get access to optimum treatment.
  2. Establishment of a robust National Pediatric Cancer Registry. This will ensure adequate data reporting, measure outcomes, help research and guide research allocation.
  3. Training of pediatric cancer care specialists of all cadres including nurses, clinicians, pathologists, radiologists, surgeons and other support staffs.
  4. Development of local treatment protocols for all the major pediatric cancers as adopting protocols from the developed world may not work. But at the same time increasing access to quality and modern treatment.
  5. Engaging non-profit organizations to help the cause, both by mobilizing financial support as well as social engagement.
  6. Resource allocation in the national health budget towards childhood cancer.

Bone marrow transplant (BMT) also called Hematopoietic Stem Cell Transplant is potential curative treatment for number of pediatric conditions- ranging from malignancies to benign diseases to genetic disorders. Diseases in children like leukemia, lymphoma, solid tumours (neuroblastoma, brain tumours etc.), thalassemia, sickle cell disease, aplastic anaemia, bone marrow failure syndromes, immunodeficiency disorders, some storage disorders etc. can be cured with BMT. Although it is an established treatment modality in developed world, the status is still very primitive in India. Although some progress has been made in last few years but a rough estimate is that less than 5% children needing BMT in India finally undergo this treatment.

Some of the hurdles encountered in BMT in India are:
  1. Late referral for BMT. Sometimes children referred for BMT are already too sick or disease is advanced and BMT is not possible or safe.
  2. Pediatric BMT units are small numbers for the country of our size.
  3. The number of trained pediatric BMT specialists, nurses and other skilled manpower is very few.
  4. Cost of BMT treatment is prohibitive and there is limited support from insurance/health care.
  5. Limited access and very high cost of some drugs used in the BMT process.
  6. Many primary care physicians are still not convinced or ignorant about this treatment option.
  7. Number of donors on unrelated donor registries is very small and insufficient for our population size.



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