Laxity of medical centres holds up treatment for patients with rare diseases

Despite the Health Ministry issuing guidelines and procedures for providing financial assistance to the patients suffering from various rare diseases, only two out of the nine medical centres selected from across the country have submitted applications for receiving funds for such treatment.

The delay puts at further risk several patients who continue to battle rare diseases and are almost completely dependent on government assistance for medicines and medical care. The Ministry has now written to these medical institutes to immediately rectify the situation to ensure that no patient suffers without treatment.

“After a long delay, the National Policy for Rare Diseases was finalised in March 2021 offering monetary aid of ₹20 lakh to only Group 1 patients (Disorders amenable to one-time curative treatment). This was modified in May 2022, with an amendment in the policy, announcing ₹50 lakh monetary aid to all groups of Rare Diseases,’’ said Manjit Singh, president, Lysosomal Storage Disorder Support Society.

It has been several months since the Health Ministry issued guidelines to these medical centres towards the utilisation of the ₹50 lakh per patient grant for rare disease treatment but most of them have not initiated any steps to implement it, he pointed out.

“While the Ministry is concerned and committed to this sensitive issue, the onus is on all these centres to process the applications of eligible patients and recommend the same to the Ministry to source the funds. Some centres are not entertaining the request applications of patients who have been approaching them. Precious time is running out for these patients,’’ he said.

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The Health Ministry has selected nine centres, including All India Institute of Medical Sciences, Delhi, Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow, and Institute of Child Health and Hospital for Children, Chennai, to help patients with rare diseases.

According to the Ministry, 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. It includes genetic diseases, rare cancers, infectious tropical diseases, and degenerative diseases. As much as 80% of rare diseases are genetic in origin and hence disproportionately impact children; 50% of new cases are in children and are responsible for 35% of deaths before the age of 1 year, 10% between the ages of 1 and 5 years and 12% between 5 and 15 years.

The Ministry in its letter to these centres said, “You are requested to furnish the requisition/demands in respect of rare disease patients being treated in the centre, to the Department of Health and Family welfare (Rare Diseases Cell) so that the funds allotted in the year 2022-23 can be used for the treatment of rare disease patients and further demands for funds can be made in 2023-24. It is also requested to share the details of patients (along with the disease category) registered for rare diseases with each centre.’’

It further said that proposals have been received from – PGIMER, Chandigarh and IPGMER, Kolkata so far.