Centre's rare disease policy, Rs 15-lakh aid a mockery, say patients

The Union Health Ministry's draft policy on rare diseases that promises one-time financial assistance of Rs 15 lakh for some of the patients, has attracted sharp criticism from patient groups and doctors, who describe it as a mockery that offers no hope for the hapless sufferers.

The new policy is a major climb down from the previous version of the policy (2017) that proposed setting up a Rs 100 crore corpus with 60% funding from the Centre and the rest from the state governments. The Centre even asked patients seeking treatments to approach the ministry following which 200-odd patients had registered themselves hoping for support.

“For one year, there was no development and then the old policy was suspended. In the new policy, there is no clarity and no financial commitments. It is a mockery (on the patients),” Prasanna Shirol, founder of the Organisation for Rare Disease India told DH.

In the fresh draft, the ministry has not put a definition of a 'rare disease'. But the Indian Council of Medical Research in 2017 defined them as diseases that affected one person for every 250,000 Indians. There are an estimated 70 million such patients in India.

The patients have now been categorised into three groups – (1) disorders amenable to one-time curative treatments (2) diseases requiring long term or life long treatments but the treatment cost is low and (3) diseases for which definitive treatment is available but the cost is very high and the treatment has to be life long.

The Rs 15 lakh mentioned in the policy is only for the first category. For the other two groups, the government suggested crowd-funding and proposed to set up a digital platform to help facilitate the flow of such donations.

On the contrary, the families hoped for a helping hand from the government mainly for the third category of patients since 2017.

“For a child weighing 10 kg, treatment cost can range between Rs 10 lakh and Rs 1 crore per year, and the cost rises with age. But the money has been promised only for those diseases that require one-time treatment whereas most of the rare diseases require continuous care. How can you design a policy based on donations,” Shirol said.

“Sadly, the government has no intentions to make this policy workable. Most of the diseases will not be covered in the one-time solution of up to Rs 15 lakhs. No Lysosomal Storage Disorders patients will be eligible. It is an eyewash,” said Manjit Singh, president, Lysosomal Storage Disorders Support Society.