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GLARING GAPS IN RARE DISEASE POLICY

Ramesh Shankar
Wednesday, April 28, 2021, 08:00 Hrs  [IST]

After years of consultations with different stakeholders and experts in the area, the Union Health Ministry has at last released the much-awaited ‘National Policy for Rare Diseases 2021’.  For a long time, stakeholders and experts have been demanding for a comprehensive policy for prevention and management of rare diseases as the government intervention on the issue is crucial for the survival of millions of rare disease patients, mainly because the prices of rare disease drugs are prohibitively expensive in the country, making them beyond the reach of most of the people affected with these diseases. In fact, after several years of persuasive and relentless efforts of some of the NGOs, the ministry had framed a policy on rare diseases and released it in 2017 at the behest of the Delhi High Court.  Till then, the country remained without any policy to address the challenges faced by the rare diseases community, though there are millions of people affected with rare diseases in the country. But barely after one year in 2018, the ministry put the policy on abeyance stating that the policy would be reviewed in the light of new information and updates available and received for further improvement and effective implementation. The ministry's somersault on the policy dashed the hopes of millions of hapless patients suffering from rare diseases. At last on January 13, 2020, the ministry issued the draft National Policy for Rare Diseases which in fact lacked clarity on several fronts and most of the rare diseases were not even covered in the one-time solution of up to Rs. 15 lakh proposed in the policy. Since then, millions of stakeholders including millions of rare disease patients have been waiting for the final policy.
In the final policy issued recently, the government has earmarked a financial support of up to Rs. 20 lakh to those rare diseases which are listed under Group 1 that require a one-time treatment. For the diseases listed under Group 2 which can be managed with special diets or hormonal supplements or other relatively low cost interventions, the policy puts the entire burden on state governments to consider supporting patients of such rare diseases. To the surprise of one and all, the policy has absolutely no consideration for Group 3 patients most of whom require lifelong treatment support and the cost of treatment of these diseases is exorbitantly high. For the Group 3 patients, the policy envisages a crowd-funding mechanism in which corporates and individuals will be encouraged to extend financial support through a robust IT platform. Funds so collected will be utilized by Centres of Excellence for treatment of all three categories of rare diseases as first charge and then the balance financial resources could also be used for research. Not surprisingly, the policy has come in for severe criticism from several NGOs working in the field. Terming the policy ‘a mockery of the right to health each person in India enjoys’ these organizations say that the policy ignores the true needs of the rare disease community in the country. Glaringly, the policy lacks clarity and there are visible gaps in the final policy which otherwise could have been a ray of hope for thousands of rare disease patients in the country. In the absence of a sustainable funding support for Group 3 patients, the precious lives of thousands of these patients, mostly children, are now at risk and at the mercy of crowd-funding.

 

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