The wait for financial support for treatment is getting longer for patients with rare diseases. The applications of about 190 patients — a majority of them children suffering from Lysosomal Storage Disorders — seeking treatment support has been pending with the Union Ministry of Health and Family Welfare for several months. And a National Policy for Treatment of Rare Diseases is yet to be finalised.
Patient advocacy groups including the Lysosomal Storage Disorders Support Society (LSDSS) and the Organisation for Rare Diseases in India (ORDI) have been repeatedly representing the case of patients with rare diseases with the Union Health Ministry. There are about 50 Lysosomal Storage Disorders.
Non-commital response
Early this year, the patient groups appealed to the Centre to grant interim support for patients till the national policy was finalised but had received a “non-committal” response from the Union Ministry, the groups said.
Manjit Singh, president of LSDSS, said there were more than 2,000 identified children with rare diseases across the country. Of this, 500 patients required lifetime treatment. “A total of 198 patients from across the country had applied with the Union Ministry of Health seeking treatment support,” said Mr. Singh. “They were recommended by doctors and respective State technical committees. “Their applications are still pending,” he said. Many of these patients require Enzyme Replacement Therapy.
In its reply to ORDI’s appeal for timely formulation of the policy, in July, the Union Health Ministry had said that it had formulated a National Policy for Treatment of Rare Diseases in 2017. But the government had decided to review the policy in the light of new information and updates. An expert committee constituted under the chairmanship of Director General of Health Services to formulate the revised policy was having deliberations with all stakeholders to finalise the draft at the earliest, the ministry said.
Letter to MPs
Prasanna Shirol, co-founder of ORDI, said they had written to 500 Members of Parliament seeking their support. “We have recently written to Parliamentary Standing Committee members on the issue,” he said.
The expert committee is likely to finalise its draft report soon, the Ministry had stated in its reply to an RTI application, Mr. Shirol said.
