High risk neuroblastoma continues to be a childhood cancer which is challenging to treat and has poor outcomes. While smaller increments in survival have been made over the years, a big step-up in survival was when Anti-GD2 therapy (now known as Dinutuximab) was introduced and this was published by Yu et al in this landmark study. I had written a blog on this in 2010 and also reflected on the Indian situation. Since then Dinutuximab has become the standard of care for high risk neuroblastoma in high-income countries.
Low and middle income countries like India have not had access to the medicine, either through clinical trials, or through compassionate use. This has now changed and the first child received Dinutuximab in Mumbai last year and this was covered in the media - Mumbai child receives special injection to treat rare cancer. Subsequent to this, I have been informed that another child has received this treatment in Bangalore and there are a few others waiting to receive it.
While this is exciting and welcome, it is important to point out that AVAILABILITY does not equate to ACCESSIBILITY. And the main reason for that in this context is AFFORDABILITY. This drug is not manufactured in India but imported from Europe. Based on the information available to me, a child who weighs around 13 kg will need 3 vials per cycle and a total of 15 vials for 5 cycles. With each vial 11,000 Euros, the total cost is approximately INR 1.4 cr + 25% custom duties. With the right kind of paper-work and eligibility for discount, the custom fees may be waived off and the price of the drug could come down to INR 56 lakh. But this still remains out of reach of almost all children with high risk neuroblastoma in India.
In conclusion, it is a welcome positive step that Dinutuximab in now available in India. With time and increased use, we hope and expect the price to be driven down so that it becomes accessible to more children who need it.