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Limited scope of draft policy on rare diseases disappoints advocacy groups

Hindustan Times, New Delhi | By
Jan 14, 2020 11:45 AM IST

The government, by applying international standards, estimates that about six to eight per cent of country’s population is affected by a rare disease.

Patients and advocacy groups are disappointed by the limited scope of Union health ministry’s draft National Policy for Rare Diseases 2020 that it put out in public domain on Monday, just a day before a Delhi court is scheduled to hear the plea of affected patients.

Representative photo.
Representative photo.

The patient groups active in seeking treatment support for those affected, such as Organisation for Rare Disease India and Lysosomal Storage Disorders Support Society, say that even after being in works for three years the policy has no concrete development that can be beneficial for patients.

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“It doesn’t mention any financial aid (as mentioned in the previous policy of 100 cr corpus fund), it doesn’t mention about way forward for the 200 patients who have already applied under Rashtriya Arogya Nidhi as a part of the earlier policy,” said the groups in a joint statement.

The draft policy proposes to bear one-time cost of upto 15 lakh for rare disease treatment to a select group of patients under the Rashtriya Arogya Nidhi.

There is no universally accepted definition of rare disease; however, the World Health Organisation defines rare disease as an often debilitating life-long disease or disorder with a prevalence of one for less per 1,000 population. Different countries have their own definitions to suit their specific requirements, and according to the Indian Council of Medical Research (ICMR), it is one in 2,500 people or less.

Since India doesn’t know the exact disease burden, it is estimated by the government applying international standards that about six to eight per cent of country’s population (72-96 million) is affected by a rare disease.

Acknowledging that due to heavy treatment cost of rare diseases (at times going up to a few crores annually for life) the government through this draft policy proposes to facilitate voluntary donations by creating a dedicated digital platform.

“...It appears that entire policy is drafted to justify that the government cannot provide treatment due to high cost as it is a resource constraint country. It admits there is lack of awareness among primary care physicians, lack of adequate screening and diagnostic facilities in India... It’s totally an eyewash and of no use to Spinal Muscular Atrophy community where medicines are astronomically priced and we are losing children every month... there is lack of intent to provide life saving drugs to patients,” says Archana panda, cure SMA foundation of India.

Advocacy groups point out lack of emphasis on research and development for drugs and treatment of rare diseases in the policy.

“Policy has adopted a very narrow scope limited to diseases listed in three categories, essentially purging diseases not listed for which no treatments currently exist. The policy ought to have addressed need for R&D for these diseases,” says Malini Aisola, co-convenor of All India Drug Action Network.

“Instead of a sustainable model to finance treatment, the policy speaks of competing interests in allocating public health resources for “maximising the overall health outcomes for the whole all of society” as the primary justification for scrapping of the corpus that existed under the previously notified policy,” she added.

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  • ABOUT THE AUTHOR
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    Rhythma Kaul works as an assistant editor at Hindustan Times. She covers health and related topics, including ministry of health and family welfare, government of India.

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