Taking paediatric cancer care to rural India

 

 

C HILDHOOD cancers are a risingproblemglobally.TheWHO states that over four lakh children develop cancer each year, with India accounting for 50,000 of these cases.While survivalrates are highin high-income countries, India still faces the problems of lack of diagnosis, delayed diagnosis, access to care, and continuation of treatment. An ICMR (Indian Council of Medical Research) paper states that there is a need for specific policy work to bring childhood cancer under control in India. Similarly, an ICMRNCDIR (National Centre for Disease Informatics and Research) study found that a dedicated paediatric oncology department was available in 41.6% of government hospitals. Take, for instance, 10-year-old Saksham (name changed).

 

Residing inTimbivillageofHimachalPradesh, the playful child started experiencing unexplained fatigue, frequent infections, and fever in 2022. His father, Ramesh (name changed), a farmer, consulted local doctors (for which he had to travel 20 km), but none of the medications they gave worked on the child. Sakshamwas thentakenalmost90 kmaway,to‘TheHimalayanHospital’ in Dehradun, where blood tests revealed that he had Acute Lymphoblastic Leukaemia (ALL), a typeofbloodcancer.Fathertosixchildren,withbarelyanyincome,Ramesh hadalreadyspentaboutRs50,000for his travels and different treatments. ThetreatmentforALL,doctorsestimated,wouldbe aboutRs 8 lakhs.

 

“I had lost all hope. My income was just enough to feed my family.Ididn’t know what to do and how to save my child,” says Ramesh.Thedoctortheninformed Ramesh about The Hans Foundation’s Hans Bal Aarogya Karyakram, which supports cancer treatment and bone marr o w transplants. Working with the hospitalandthefamily,theprogrammehas covered the cost of chemotherapy, bonemarrowtransplant,bloodtransfusions and other medical expenses for Saksham, who is now on the road to recovery.

 

The Hans Bal Aarogya Karyakram, run in collaboration with the Uttarakhand government, is bridging the gap of financial access for children who can’t afford treatment forcriticaldiseases likecancer. So far, over 2,500 children have benefited fromthis initiative andhave received life-saving treatments. Helping parents access quality cancer care Established in 2017 in close partnership with the state government, the programme provides free treatmenttochildrenaged0-18yearswho are suffering fromcriticaldiseasesor conditions, complementing the Rashtriya Bal Swasthya Karyakram (RBSK)andsubsequently,Ayushman Bharat schemes by supporting treatment for conditions outside the schemes’ purview, The District Early Intervention Centers (DEICs), established under the RBSK, identify infants and childrenwith developmental delays, disabilities and diseases. Once identified,thesechildrenarereferredtotwo empanelledmedicalcolleges, namely The Himalayan Hospital (Swami Ram HimalayanUniversity) andShri Mahant Indresh Hospital.

 

The Hans Foundationhaspartneredwiththese twocollegesandreimbursesthetreatment expenses for diseases like cancer. While the programme is broadlydesigned,90percentofthepatients whoneedsupportarecancerpatients, as cancer treatments require a lot of time and money. The average cost of treatingcommoncancers inchildren like ALL and Acute Myeloid Leukaemia (AML) can easily range from Rs 5-15 lakhs or even more, depending on the complexity of the diseaseatthetimeofdiagnosis. Most ofthechildrenwhocomeinfortreatment are either infants, or between the age group of 5-8. Common cancers in children are different from those seen in adults. Dr BP Kalra, Professor of Pediatrics, DepartmentofPediatrics,Himalayan Institute of Medical Sciences, Dehradun states that leukaemias (cancer of blood-forming tissues), lymphomas (cancer of the lymphatic system)are themost common,followed by brain and bone cancer and tumoursliketheWilmsTumour(renal cancer). “We seethatmostcommonly, children get cancerin the first or second year of life, or in the 5-10 age group. In the school-going age group, leukaemiasandlymphomasaremost common. The outcome is generally goodinthisagegroup,” says Dr Kalra. The Himalayan Institute caters to children from across Uttarakhand, Uttar Pradesh, and sometimes Punjab, Haryana, Himachal Pradesh and more.

 

The reason, the doctor adds, is because of lack of facilities for treatment, which makes parents and children travel far and wide for basicaccess.Whatisneededforgood outcomes, according to Dr Kalra, is an early, prompt, correct diagnosis which should be followed by effective, evidence-based therapy after whichsupportive care is paramount. Helping 2,500 children get cancer treatment Childhoodcancermanagementin Low and Middle-Income Countries (LMICs), including India, is characterisedbydelayeddiagnosisandtreatment initiation, inadequate/incompletetreatmentandlow survivalrate, accordingtoareportinIndianCancer Society. For starters, parentsmustbe awareofthecommonsymptomsand gotoa doctorwhentheynoticethese including: recurrent fevers, loss of appetite, loss of weight, swelling in parts of the body, persistent pain, suddentiredness,fatigue,headaches, any lumps or mass. After the first step where families notice symptoms and access care, the second step is clinical evaluation anddiagnosis.FacilitiesliketheDEIC should be able to help in this step. Thelastandmostcrucialstepisaccessibility to treatment.

 

As the majority of public hospitals don’t have paediatric oncology care, parents either have to take them far to a governmenthospitalthat has thetreatment, or go to a private hospital nearby. The role of trusts like The Hans Foundationisveryimportantinsuch cases, as they help families afford quality healthcare and save the lives oftheirchildrenthroughtimelytreatment. Dr Kalra says that his biggest requesttoparentsistocontinuetreatment. “Parentsmustremainhopeful and continue treatment. The results are goodandmostchildrendowell,after earlydiagnosis.WearethankfultoThe HansFoundationwhichmakesitpossible for so many children to access treatment,” adds Dr Kalra.