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Draft policy on rare diseases looks at Rs 15 lakh aid to the poor

In an attempt to address concerns of patients suffering from any rare disease and reeling under its exorbitant cost of treatment, the health ministry has come up with a new draft National Policy for Rare Diseases, 2020, which highlights “scarce resources” to provide financial support for treatment of rare diseases.

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Last Updated: Jan 14, 2020, 11.07 AM IST
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(This story originally appeared in on Jan 14, 2020)
NEW DELHI: In an attempt to address concerns of patients suffering from any rare disease and reeling under its exorbitant cost of treatment, the health ministry has come up with a new draft National Policy for Rare Diseases, 2020, which highlights “scarce resources” to provide financial support for treatment of rare diseases.

The draft policy proposes to set up a registry under the Indian Council of Medical research (ICMR) to create a database and provide financial assistance of up to Rs 15 lakh to Ayushman Bharat beneficiaries for rare diseases that require a one-time treatment in tertiary hospitals only. It also suggests voluntary crowdfunding as an alternate means of financial support and notifying government hospitals to facilitate treatment. “In resource-constrained settings, it is pertinent to balance competing interests of public health for achieving optimal outcome for the resources allocated,” the draft says.

Alternatively, the draft proposes to set up a digital platform for voluntary crowdfunding. “Keeping in view the resource constraints, and a compelling need to prioritise the available resources to get maximum health gains for the community/population, the government will endeavour to create alternate funding mechanism through setting up a digital platform for voluntary individual and corporate donors to contribute to the treatment cost of patients of rare diseases,” the draft says.

The health ministry has asked all stakeholders to send their comments on the draft by February 10.

The draft policy also categorises rare diseases under three categories based on clinical experiences and treatment availability. The policy also states that in the absence of data to clearly define rare diseases, such diseases in India will construe the three categories as identified in the policy.

Public health groups have criticised the policy. “It appears the entire policy is drafted to justify that government cannot provide treatment due to high cost as it is resource constrained,” says Archana Panda of Cure SMA Foundation of India. Panda said the policy has adopted a very narrow scope limited to only 3 categories, while ignoring those where treatment is yet to be developed and R&D is required.

There are 7,000 - 8,000 rare diseases, but less than 5% have therapies available. About 95% rare diseases have no approved treatment and less than 1 in 10 patients receive disease specific treatment. Where drugs are available, they are expensive.

The draft says that interventions that address health problems of a much larger number of persons by allocating a relatively smaller amount are prioritised over others such as funding treatment of rare diseases where much greater resources will be required for addressing health problems of a far smaller number of persons.

“Hence any policy on rare diseases needs to be informed by the available scarce resources and the need for their utmost judicious utilisation for maximising the overall health outcomes for the whole of society measured in terms of increase in terms of healthy life years,” the draft said.

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