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Vardhan directs officials to expedite formulation of national policy for treatment of rare diseases

Press Trust of India  |  New Delhi 

Union Health Minister Harsh Vardhan Tuesday directed ministry officials to expedite the process of formulating the National Policy for Treatment of Rare Diseases (NPTRD) in consultation with all stakeholders.

The policy was announced by the government in 2017 with a corpus of Rs 100 crore to provide financial aid for treatment of patients suffering from rare ailments.

However, in November last year, the health ministry put the policy and the corpus on hold, saying the focus was currently on communicable and non-communicable diseases.

Since then, there have been several representations to the central government from organisations including LSDSSI seeking reinstatement of the policy and funds to support patients.

Chairing a high-level meeting to review the status of National Programme for prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Strokes (NPCDCS), Vardhan also stressed on accelerating interventions to tackle the rising burden of non-communicable diseases.

There is an urgent need to expedite and accelerate the non-communicable diseases (NCD) interventions as the burden of these aliments is rising in the country, the minister said as he sought people's participation in dealing with the situation.

"This can be done through a mass movement with 'jan bhagidari' where the energy and knowledge of all stakeholders and partners are channelised. I urge all cardiologists of the country to come forward and be part of this mass movement so that we can successfully combat NCDs in the country," Vardhan said.

Taking stock of the programme, he suggested an integrated and multi-sectoral coordination, health promotion and strengthening of health systems to tackle NCDs, an official statement said.

"New challenges demand we make innovative strategies and encourage new ideas and innovations and take advantage of them so that nobody is left untouched. Half the battle is won when everyone is made aware of the ill-effects of unhealthy lifestyle," Vardhan said.

He also directed officials to start aggressive awareness campaigns on adopting a healthy lifestyle to reach out to all people.

The minister further said that approved NCD clinics and day-care centres must be made functional.

"Ensure that there is adequate availability of drugs/consumables in NCD clinics," he said.

The Union Health Minister also reviewed the status of Rashtriya Arogya Nidhi that includes three sub-components -- Rashtriya Arogya Nidhi, Health Minister's Cancer Patient Fund and a scheme for financial assistance for poor patients suffering from specified rare diseases.

In the review meeting, the minister directed officials to expedite the process of formulating a national policy for treatment of rare diseases in consultation with all stakeholders, the statement said.

While reviewing the National Programme for Prevention and Management of Trauma and Burn Injuries (NPPMT&BI) Vardhan emphasised on the importance of creating an enhanced capacity and infusing the knowledge of road safety related actions among public.

He also suggested working closely with state governments and developing an action plan for road safety.

According to the Organisation for Rare Diseases India (ORDI), there are 7,000 known rare diseases in India with a total of 70 million rare diseases patients in India. Currently, only one in 20 Indian patients get diagnosed with a rare disease.

According to the health advocacy groups fighting for the cause of rare diseases in India, the cost of medicines for such diseases range anywhere between Rs 1 lakh to Rs 50 lakh per month.

(This story has not been edited by Business Standard staff and is auto-generated from a syndicated feed.)

First Published: Tue, June 11 2019. 21:10 IST
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