India has made significant advances in becoming the generic pharmaceutical hub of the world. One would expect that with such a flourishing market, availability of essential cancer medicines should not be a problem. With people flocking to India from countries like China, UAE and New Zealand for ‘pharmaceutical tourism’ in the hope of purchasing cheaper chemotherapy medicines, one might also expect these medicines to be affordable for common Indian people, including the poor. Our recent findings published in BMJ Global Health on the availability and affordability of essential cancer medicines in India showed otherwise. To contextualise the research findings and inspired by true events, here is Arun Kumar’s story, a daily wage labourer from the state of Bihar:

Arun earns Rs. 300 ($4) a day as a ceramic tiler; an inconsistent job enough to feed his family of five at least one meal a day and buy Rani, his 8-year-old daughter, one more strip of pain killers. After months of painful symptoms, Rani was diagnosed with standard-risk acute lymphoblastic leukaemia at Delhi’s public hospital. For three weeks, Arun and Rani stayed in India’s version of the ‘Ronald McDonald house’; an overcrowded ‘Dharamshala’ where families pay Rs. 250 ($3.50) a week. They bathed thrice a week and struggled to buy and cook food as well as purchase ongoing symptom managing medications.

When treatment day finally arrived, they were informed that the chemotherapy medicines were unavailable. The medicines were either out of stock, there was no ready tender in place or the hospital simply succumbed to an inefficient procurement system. To start the induction phase in the first five weeks of the cycle, the hospital only had some of the required medications and to ensure Rani’s cycles were not disrupted, Arun was asked to purchase the remaining stock himself (or wait for unknown periods of time). This consisted of four vials of Vincristine (1mg) worth Rs. 192 ($3) and one vial of L-Asparaginase (10000 IU) worth Rs. 1500 ($22), if bought as the lowest-priced generics.

Arun carrying his daughter, inquired for the medicines at multiple pharmacies. Finally, one pharmacist handed over the cancer medicines but did not offer any discount that day, which meant purchasing the medicines at maximum retail price. With inadequate money in his pocket, Arun left and began to process his options thus far: he could return home with the sick child and find work for at least 6 days to compensate for purchasing the medicines – but how would he feed his family? Arun then thought of selling some household assets. He also realised that as Rani’s treatment progresses, he might have to sell his land, take a loan with unscrupulous interest or even worse… abandon treatment.

Such is the peril for India’s poor. The journey to timely treatment includes finding medicines and contemplating payment options, all whilst experiencing anguish, exhaustion and desperation. Caregivers carry a sick child with them everywhere. They become jobless, homeless and eventually hopeless when the odds are stacked against them. Our research highlights low availability of essential chemotherapy medicines which are moreover unaffordable for people like Arun. If his daughter was high-risk, the costs would be even greater and of course he could be in a position of requiring more (or less) than 6 days’ wages, depending on availability. However, even 1 days’ wage is considered unaffordable and low availability of any cancer medicine adds to the risk of catastrophic expenditure.

Our calculations were just for the chemotherapy medicines. Imagine the other expenditures Arun had to pay, such as supportive medicines, meals, accommodation, transportation, admission fees and diagnostic tests. This experience is even worse for those breadwinners earning less than Arun in India. While our study focused on childhood cancers, it is worth mentioning that the same medicines surveyed on the WHO recommended essential medicines list are also applicable for adult cancers. Hence, Rani could be a 40-year-old Reena suffering from lung cancer. These findings are indeed plausible for one of India’s leading killers.

Streamlining medicine procurement and distribution systems is crucial, requiring political leadership, efficient supply chain management, scientific demand forecasting and robust quality assurance. As we completed our study, the National Pharmaceutical Pricing Authority of India announced measures on reducing prices for some cancer medicines. While this is important, it is also recommended to increase availability through the Jan Aushadhi scheme – a government initiative to provide medicines at cheaper prices. Or better yet, increase subsidies for cancer medicines in health insurance schemes such as Ayushman Bharat. Low availability and unaffordable medicines were the main findings of our research – but let’s remember it’s also the cumulative suffering, which links and exacerbates the direct and indirect costs.