AIIMS-Delhi acquired Rs 23 cr from Centre in 5 years for uncommon illnesses: RTI reply – ET HealthWorld

AIIMS-Delhi acquired Rs 23 cr from Centre in 5 years for uncommon illnesses: RTI reply – ET HealthWorld

New Delhi: The AIIMS-Delhi acquired greater than Rs 23 crore in funding from the Centre for therapy of uncommon illnesses within the final 5 years, in keeping with data acquired by means of RTI Act. General the Centre has launched round Rs 90 crore in funds to a number of Centres of Excellence (CoE) for therapy of uncommon illnesses since 2019, the data acquired beneath the Proper to Data (RTI) Act confirmed.

The Delhi All India Institute of Medical Sciences, or AIIMS, one of many eight CoE for therapy of uncommon illnesses within the nation, mentioned it acquired Rs 1 crore in 2019, nil in 2020, Rs 4.10 crore in 2021, Rs 7.12 crore in 2023, and Rs 10.93 crore in 2023.

The Division of Well being and Household Welfare mentioned as per information maintained within the Uncommon Illness Cell, the federal government launched Rs 1.30 crore in 2019-20, Rs 10 crore in 2020-21, Rs 3.15 crore in 2021-21, Rs 34.99 crore in 2022-23, and Rs 40 crore in 2023-24 (until date).

The RTI question was filed by Noida-based social activist Amit Gupta.

Based on the data, AIIMS-Delhi handled 22 uncommon illness sufferers in 2021 and 12 in 2022 from the central funds.

These 34 sufferers have been handled for uncommon illnesses akin to MPS II, Gaucher, Atypical HUS, DMD, Tyrosinemia type-1, Adrenoleukodystrophy, Larons Syndrome, Griscelli syndrome sort -2, extreme mixed immunodeficiency syndrome, in keeping with the data.

The uncommon problems given therapy cowl by the Centre are Tyrosinemia sort 1, Gaucher, MPS 1, MPS 2, DMD, Atypical HUS, Adrenoleukodystrophy, Larons Syndrome, Omenn Syndrome, Extreme Mixed Immunodeficiency Syndrome (SCID), Griscelli Syndrome type-2, X-Linked Lymphoproliferative Dysfunction, Turner Syndrome, A number of Pituitary Hormone Deficiency, Development Hormone Resistance, Nephropathic cystinosis, Shwachman Diamond syndrome, Prader willi Syndrome, Congenital hyperinsulinismc, Pompe (IOPD), and TK2 Deficiency.

“As per modification within the coverage vide this Ministry (Division of Well being and Household Welfare) dated Might 19, 2022, monetary help as much as Rs 50 lakh is offered to the sufferers affected by any class of uncommon illnesses for therapy in any of the Centres of Excellence for uncommon illnesses beneath Nationwide Coverage for Uncommon Ailments (NPRD),” the response acknowledged.

“Within the monetary 12 months 2022-23, the monetary help as much as Rs 50 lakh is offered to COEs for therapy of 203 sufferers affected by uncommon illnesses,” it added.

In July 2022, Union Minister of State for Well being and Household Welfare Dr Bharati Pravin Pawar knowledgeable Lok Sabha that the federal government launched the Nationwide Coverage for Uncommon Ailments (NPRD) in March 2021 for the therapy of uncommon illness sufferers.

Beneath the coverage, the uncommon illnesses have been recognized and categorised into three teams.

Issues in Group 1 are amenable to one-time healing therapy, whereas these in Group 2 are illnesses requiring long run or lifelong therapy having comparatively decrease value of therapy, Pawar mentioned.

Group 3 has illnesses for which definitive therapy is accessible however pose sure challenges akin to making optimum affected person choice, excessive value, and lifelong remedy, Pawar knowledgeable the Lok Sabha in a written reply.

The minister additionally mentioned eight CoEs have been recognized for prognosis, prevention, and therapy of uncommon illnesses, whereas 5 nidan kendras have been arrange for genetic testing and counselling companies.

With the intention to obtain monetary help for therapy of uncommon illness, a affected person might method the closest CoE, the minister added.

  • Printed On Jul 30, 2023 at 03:45 PM IST

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