New Delhi: Several children suffering from rare diseases have succumbed to death, when the government is struggling with scarcity of funds to implement the already-formulated policy on rare diseases. The National Policy for Treatment of Rare Diseases aims to provide financial assistance for the treatment of rare diseases. The ministry of health and family welfare that is getting continuous requests from patient organizations for funds has reached out to the finance ministry seeking financial help.

“We have sent a proposal to Finance Ministry for providing funds for implementation of the policy under Rashtriya Arogya Nidhi (RAN). There is a shortage of funds and we also need funds for saving children from several other diseases such as pneumonia and other childhood diseases," said Manoj Jhalani, additional secretary, union health ministry. RAN provides financial assistance to patients, living below poverty line and who are suffering from major life threatening diseases, to receive medical treatment at any of the super speciality Hospitals/Institutes or other Government hospitals. The financial assistance to such patients is released in the form of ‘one-time grant’.

“Every child has a right to live but rare diseases require huge funds annually. We are trying to resolve the issue as soon as possible. We have also constituted a committee on the same. Currently we are already providing financial aid for some children to poor economic background," said Jhalani.

Patient organizations have been seeking immediate implementation of the National Policy for Treatment of Rare Diseases, stating the affected patients are losing lives due to “delayed response" from the government. The Lysosomal Storage Disorders Support Society (LSDSS) has claimed that several children have lost their lives due to lack of treatment in past one year.

According the non-profit organization, over 160 patients have submitted applications in Rare Diseases Cell of the union health ministry for treatment support, as directed in the policy. “Till date, not a single child has been provided the treatment. Patients are losing lives as the government is not responding. Around 20 children have died in one year, out of which 10 are in Tamil Nadu alone," LSDSS president Manjit Singh alleged.

The policy aims to set up of a Central Technical Committee (CTC), individual State Technical Committees (STCs) and Rare Disease Cell for treatment of patients. Claiming that application process and distribution of funds under the policy are ‘tedious’ and ‘complicated’, the activists said that patients have been facing problems in availing treatment even after these committees have been set up.

“This was ideally supposed to ease processing of patient applications and distribution of funds. Even when some states have identified patients for treatment and formed the STCs, no applications have been processed by CTCs. “Some states have shared patient applications with the Centre and requested for funds," Prasanna Shirol, the co-founder and executive director of Organisation for Rare Disease India (ORDI) said.

A rare disease is a health condition of low prevalence that affects a small number of people compared with other prevalent diseases in the general population. Rare diseases include genetic diseases, rare cancers, infectious tropical diseases and degenerative diseases. 80% of rare diseases are genetic in origin and hence disproportionately impact children. According to the union health ministry, so far about 450 rare diseases have been recorded in India. The National Policy for Treatment of Rare Diseases was approved by the Union Health Ministry in May 2017.

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