Lack of policy on rare diseases a bane for kids

Jaipur: National Policy for Treatment of Rare Disease has come as a hope for children born with the metabolic disorders (rare diseases). Until state government does not take interest in formulating its own policy on rare diseases, children of the state suffering from rare diseases will find it difficult to get its benefits.
In Rajasthan, six such patients had died in the recent past as they did not get proper treatment. At present, there are 19 identified patients suffering from lysosomal storage disorder (a group of rare diseases). But, only six patients are getting highly expensive treatment through charity programme but 13 are still without treatment.

Rajasthan is lagging to other states in taking steps to provide relief to such children. So far, only Delhi has come forward for allocating a budget of Rs100 crore for patients on February 2, 2018. Karnataka is the only place wherein the patients are getting treatment from government. So far, Rs 4 crore has been given for the treatment.

Karnataka is the only state wherein the Centre of Excellence has been set up in Indira Gandhi Institute of Child Health. Tamil Nadu government will soon start its centre of Excellence in Institute of Child Health. While, Rajasthan government has drafted a policy three years ago but no further steps has been taken so far.

Recently, the Delhi High Court stressed on the importance of state governments’ intervention for the same. Health being a state subject, the high court urged the states to show urgency in the matter.

The doctors in the state welcomed the decision of forming corpus of funds by the Centre. “Currently, a corpus of Rs100 crore has been allocated by the ministry of health and family welfare for rare disease patients under the National Policy for Treatment of Rare Disease,” said Dr Ashok Gupta, J K Lon Hospital’s superintendent, who is member of the panel, which formed the national policy.

Now, the states are entitled to a share of this corpus for rare diseases under this policy and thus, should come forward and ask the Central government for funds from the corpus.

According to the sources, the state government will have to share 40% to get 60% from Centre of treatment of children with rare diseases.

“The onus now lies on the Rajasthan and other state governments to request a part of this corpus which can be used for providing relief to rare disease patients without further delay and also to draft their rare disease policy,” said Dr Lalit Bharadia, a rare disease expert.

Besides, parents of children in the state are worried about their children with rare diseases. Vikas Bhatia, father of three children who died of rare diseases, said, “A policy on rare diseases is urgently required for the benefit of children who are not getting the treatment. In the state, it is estimated that 280 children are born with birth defects including rare diseases. It is estimated that out of these children, 5% of them are born with inborn error of metabolism. But, due to lack of awareness and newborn screening and treatment, a lot many children die or their mental development is not adequate.”

Bhatia is now helping parents with children having rare diseases in getting medical facilities.

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Grim picture

Rare diseases are a group of estimated 7,000 diseases

Most rare diseases are genetic

All genetic diseases are rare diseases, not all the rare diseases are genetic diseases

Many of them do not have treatment available

But there are certain rare diseases for which treatment is available but it is quite costly