While the central government is considering this move certain patient’s rights organisation such as Cure SMA Foundation of India, Lysosomal Storage Disorder Support Society (LSDSS), Mr Kishori Lal, a cancer patient, and All India Drug Action Network (AIDAN) have come forward to point out flaws in the government’s plan. A joint statement released by them stated the reasons why doing so would not be plausible for the life-saving drugs used for cancer and other rare disease
While speaking to My Medical Mantra, Malini Aisola, co-convenor, All India Drug Action Network Health said, “We feel that the list of about 73 medicines for cancer and rare diseases leaves out several critical medicines. The mechanism being suggested to bring down their prices is faulty and inadequate. This is because the prices of these medicines are being imported so high that trade margin capping would have a negligible impact on making them more affordable.”
Aisola also stated, “We are grappling with the high prices of rare disease drugs that keeps them out of reach of almost all patients, including those from the middle class. The government has premised the amendment exempting drugs for rare diseases from the provisions of the DPCO on the false argument that it will incentivise foreign companies to bring new treatments to India. The truth is that companies refuse the register their products because they do not view the Indian market as lucrative due to the low purchasing power of Indians given the prohibitive price of these treatments.”
The access problem is very real for patients. Mr Kishori Lal who is being treated for ALK-positive non-small cell lung cancer at AIIMS has successively struggled to get access to crizotinib(Crizalk) and then ceritinib (Spexib) which are targeted therapies for his type of cancer.
Aisola added, “In most cases even if these caps were applied the actual price reductions for patients will not be sufficient. The whole exercise is a poor attempt to make up for a bad policy decision in the form of the DPCO amendments – one that should immediately be withdrawn.”
She further said, “We ask that all the relevant arms of the Government work together to ensure that pharmaceutical corporations register and price their drugs reasonably in India and make use of all policy tools towards bringing about affordability of exorbitantly priced cancer and rare disease medicines.
The statement further said, ‘We ask that the National Policy for Treatment of Rare Diseases not be delayed further by the Government over putting up an economic model. The policy is needed now to pave the path for access to the permanent cures through gene-therapies that are in development.’