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Patient groups speak out on rare diseases policy

Image ID: 59305013Patient groups are calling on the Union Health Ministry to make sure that those with rare diseases can avail treatment until a national rare diseases policy is in place. 

The Organization for Rare Disease India (ORDI) and the Lysosomal Storage Disorder Support Society (LSDSS) have called on Union Health Minister Dr Harsh Vardhan to implement some manner of temporary arrangement, in order to provide assistance to rare disease patients for treatment.  This is amidst the stalled rollout of the National Policy for Treatment of Rare Diseases (NPTRD), a policy which would allocate Rs 100 crore to fund research into and treatment for rare diseases including by administering financial assistance to patients. 

The NPTRD has been in the works since 2009 and was actually approved last year. However, the Centre withdrew the policy in December amidst allegations the policy was being neglected by officials. A number of issues were raised, including difficulty defining what exactly constitutes a rare disease and so who should benefit from the provisions of the law to provide aid for treatment. This incensed advocacy groups at the time and the controversy has not subsided since, with the issue being heard before the courts.

In February, the Delhi High Court ordered the Centre to begin implementing a rare diseases policy at the earliest. Meanwhile, the Supreme Court wrote to 34 states and union territory governments about the establishment of district-level committees to oversee treatment for rare diseases and guarantee access to diagnostics and care. Meanwhile, advocacy groups including ORDI and LSDSS say patients are dying because of the delays, which mean they are struggling to avail treatment. “Sadly, we are losing about five patients every month to these dreaded disorders in the absence of timely treatment,” said LSDSS president Manjit Singh. 

The letter sent by the LSDSS and ORDI to Dr Vardhan specifies a group of 190 people who had been approved to receive assistance under the provisions of the NPTRD. “All these patients have been medically evaluated by the respective state technical committees and are eligible for funding for their treatment,” LSDSS said. “Unfortunately, their hopes of any support for treatment have diminished, and are left with no tangible option. 

“On behalf of all these patients, we would like to make a fervent appeal to you to make [an] immediate interim arrangement till the policy formulation process is over for these group of patients so that they can continue with their treatment.”

It is estimated that rare diseases – a group of conditions with low prevalences in isolation – cumulatively affect around seventy million Indians. The NPTRD was seen by many as a boon for those with rare diseases – making the palpable disappointment and anger its withdrawal sparked understandable. “Every day delay in finalizing the NPTRD means unwanted agony and trauma for patients and their families – as well as unfortunate deaths occurring during this period,” said ORDI co-founder Prasanna Shirol. 

Vardhan has shown willingness to make the NPTRD a reality, calling on Union Health Ministry officials in June to hasten efforts to draw up a reframed NPTRD and end the impasse. With continued representations from advocates and patients, it is clear that a failure to do so in the near future will not be well-received.

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