Kerala

Additional corpus sought for rare disease patients

Finance Department considering proposal for ₹10 crore

The Finance Department is considering a proposal by the Kerala Social Security Mission (KSSM) to create an additional corpus of ₹10 crore for treating persons with rare diseases under its Thalolam scheme.

Life-threatening diseases that afflict 100 people in a population of a lakh are called rare diseases. Treatment is available only for some of them and the cost is very high. Primary immune deficiency disorders, inborn errors of metabolism, and Lysosomal Storage Disorders (LSD) such as Pompe disease and Gaucher disease are some of the diseases listed rare in the State.

Enzyme deficiencies

The proposal was mooted after the Union government temporarily withdrew the National Rare Disease Policy some time ago.

According to sources in the KSSM, the plan is to offer financial help to treat patients who suffer from five or six conditions under LSD, which are inherited metabolic disorders. People with LSD will have enzyme deficiencies.

It affects the functioning of lysosome, the structure in cells that breaks down proteins, carbohydrates, and old cell parts to help the body recycle them. This leads to an abnormal build-up of toxic materials in the cells.

Manoj Manghat, State coordinator, Lysosomal Storage Disorders Support Society, had approached the High Court, urging the government to bear the expense for enzyme replacement treatment for his son who is suffering from the condition. The society had also filed another case highlighting the plight of other children with similar problems. Following this, a State-level technical committee involving expert doctors and bureaucrats was formed to examine the disorders to be addressed in Kerala, assess the cost effectiveness of the treatment and funding requirements etc. It was the committee that suggested appointing the KSSM as the nodal agency for handling the issues of rare disease patients.

28 children identified

Mohammed Asheel, Executive Director, KSSM, said, “So far, 28 children from across the State have been identified, who are in treatable condition. The treatment expense for one child can go up to ₹50 lakh a year. As they require not just a one-time help, but continuous support, we have proposed an additional allocation.” Under the Thalolam scheme, children aged under 18 are given free treatment for chronic diseases.

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Printable version | Apr 7, 2020 4:09:13 AM | https://www.thehindu.com/news/national/kerala/additional-corpus-sought-for-rare-disease-patients/article29569294.ece

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