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The Government Doesn’t Consider Genetic Disorders Important: I.C. Verma

Dr I.C. Verma speaks to Outlook on what lawmakers need to address to tackle genetic diseases.

The Government Doesn’t Consider Genetic Disorders Important: I.C. Verma
Photograph by Jitender Gupta
The Government Doesn’t Consider Genetic Disorders Important: I.C. Verma
outlookindia.com
2019-06-14T16:49:38+05:30

Dr I.C. Verma has spent decades studying the challenges in diagnosing and treating genetic diseases. A former director at the Institute of Medical Genetics and Genomics at Sir Ganga Ram Hospital, Delhi, he spoke to Siddhartha Mishra on what lawmakers need to address to tackle genetic diseases. Excerpts…

The status of diagnosis and treatment of genetic diseases?

As you say, there has been tremendous advancement in the diagnosis and treatment with this technology called “next generation sequencing”. You can study many genes at the same time at low cost. Earlier, what used to cost Rs 1 lakh now costs only Rs 20,000. This has enabled proper diagnosis of genetic disorders. For treatment, we need precise diagnosis. Correspondingly, with changes in technology, there have also been changes in the technologies like innovative therapies of recent years. 

More than seven per cent of Indians are affected. Are these diseases really rare?

I think about 6-8% of people suffer from rare diseases in India, as elsewhere in the world.  Many more are carriers of these genes, but they do not suffer from disease.  Individually, these diseases are rare, but combined a lot of people have them. 70 Million affected people is not a small number.  It is quite high. You can’t compare the number with that of diabetes, or heart disease or hypertension. But many in the Health Ministry see it this way: the money that can be used to treat one patient with a rare disease can save 1000 diarrhea patients, or 100 people with diabetes mellitus.  This mindset has to change. You cannot compare oranges to apples, and the people with are diseases have an equal right to the “public money” as others.

And...

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