India notifies first policy on rare diseases

India plans to create a nationwide registry for database on rare diseases, classify identified rare diseases in three teams and supply for one-time authorities monetary help of as much as Rs 20 lakh for sure diseases as per the nation’s first National Policy for Rare Diseases notified on Wednesday.

The policy comes over three years after the health ministry formulated a National Policy for Treatment of Rare Diseases in July 2017 however saved it in abeyance. In the brand new policy, formulated after detailed stakeholder consultations, ‘rare diseases’ haven’t been outlined however categorised into three teams primarily based on professional opinion.

Group 1 has problems amenable to one-time healing therapy, together with osteopetrosis and Fanconi anaemia. Group 2 has diseases requiring long-term or lifelong therapy with comparatively decrease value of therapy and profit has been documented in literature, together with galactosemia, extreme meals protein allergy, and homocystinuria. Group 3 has diseases for which definitive therapy is out there, however challenges are to make optimum affected person choice for profit, and really excessive value and lifelong remedy, overlaying diseases reminiscent of spinal muscular atrophy (SMA), Pompe illness, and Hunter syndrome.

The policy says the federal government would supply monetary help of as much as Rs 20 lakh to poor sufferers and people coated beneath Ayushman Bharat for diseases beneath Group 1.

The state governments can be requested to undertake therapy of diseases coated beneath Group 2, which largely embody problems managed with particular dietary formulae or meals for particular medical functions (FSMP) and problems which are amenable to different types of remedy.

For diseases categorised beneath Group 3, which require life-long costly remedies, the federal government would create a digital platform to deliver collectively Centres for Excellence, sufferers present process therapy and company donors or potential voluntary people who might assist fund therapy.

Experts and caregivers working with rare diseases sufferers mentioned the federal government should do extra.

“The Centre needs to work out mechanism to fund all three categories,” mentioned Ashok Gupta, in-charge of Rare Diseases Centre at Jaipur’s JK Lon Hospital. “The cap of Rs 20 lakh for Group 1 disease will not meet requirements. Treatment of rare diseases is expensive. For Group 3 also the government should work out a 60:40 model where 60% could be funded by charitable organisations and 40% by the government. If you have Rs 35,000 crore for Covid-19 vaccination programme, something can be done for such expensive treatments, which no family can afford.”

Some dad and mom of youngsters affected by rare diseases mentioned they felt that the federal government has given up on them.

“There are no timelines on when this digital platform would be functional,” mentioned Archana Panda, guardian of a kid affected by spinal muscular atrophy and cofounder Cure SMA Foundation of India, a parent-led neighborhood to lift consciousness about this rare illness. “Diseases like spinal muscular atrophy don’t give you time. It is like the government has given up on rare diseases patients who have to undergo lifelong treatment. The policy does not spell out the role of private hospitals. Sir Ganga Ram Hospital, which sees the highest number of rare diseases patients in India, does not even figure in the list of Centres of Excellence,” she mentioned.

The authorities has recognized eight Centres of Excellence, together with AIIMS Delhi, Maulana Azad Medical College, Sanjay Gandhi Post Graduate Institute of Medical Sciences Lucknow, PGIMER Chandigarh, King Edward Medical College Mumbai, Centre for DNA Fingerprinting and Diagnostics Hyderabad, Institute of Post Graduate Medical Education and Research Kolkata, Centre for Human Genetics with Indira Gandhi Hospital Bengaluru.

Dr Gupta mentioned extra centres have to be recognized. “At least two centres in every state needs to be identified as a centre of excellence,” he mentioned. “It will help patients as the time and cost of moving them is also a lot.”

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