Rare Diseases Treatment: Delhi AIIMS received Rs 23 crore from Govt in 5 years, reveals RTI

Overall the Centre has released around Rs 90 crore in funds to several Centres of Excellence (CoE) for treatment of rare diseases since 2019, the information received under the Right to Information (RTI) Act showed. 

The Delhi All India Institute of Medical Sciences, or AIIMS, one of the eight CoE for treatment of rare diseases in the country, said it received 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 Department of Health and Family Welfare said as per records maintained in the Rare Disease Cell, the government released 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 (till date).

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

According to the information, AIIMS-Delhi treated 22 rare disease patients in 2021 and 12 in 2022 from the central funds.

These 34 patients were treated for rare diseases such as MPS II, Gaucher, Atypical HUS, DMD, Tyrosinemia type-1, Adrenoleukodystrophy, Larons Syndrome, Griscelli syndrome type -2, severe combined immunodeficiency syndrome, according to the information.

The rare disorders given treatment cover by the Centre are Tyrosinemia type 1, Gaucher, MPS 1, MPS 2, DMD, Atypical HUS, Adrenoleukodystrophy, Larons Syndrome, Omenn Syndrome, Severe Combined Immunodeficiency Syndrome (SCID), Griscelli Syndrome type-2, X-Linked Lymphoproliferative Disorder, Turner Syndrome, Multiple Pituitary Hormone Deficiency, Growth Hormone Resistance, Nephropathic cystinosis, Shwachman Diamond syndrome, Prader willi Syndrome, Congenital hyperinsulinismc, Pompe (IOPD), and TK2 Deficiency.

"As per amendment in the policy vide this Ministry (Department of Health and Family Welfare) dated May 19, 2022, financial assistance up to Rs 50 lakh is provided to the patients suffering from any category of rare diseases for treatment in any of the Centres of Excellence for rare diseases under National Policy for Rare Diseases (NPRD)," the response stated.

"In the financial year 2022-23, the financial assistance up to Rs 50 lakh is provided to COEs for treatment of 203 patients suffering from rare diseases," it added.

In July 2022, Union Minister of State for Health and Family Welfare Dr Bharati Pravin Pawar informed Lok Sabha that the government launched the National Policy for Rare Diseases (NPRD) in March 2021 for the treatment of rare disease patients.

Under the policy, the rare diseases have been identified and categorised into three groups.

Disorders in Group 1 are amenable to one-time curative treatment, while those in Group 2 are diseases requiring long-term or lifelong treatment having relatively lower cost of treatment, Pawar said.

Group 3 has diseases for which definitive treatment is available but pose certain challenges such as making optimal patient selection, high cost, and lifelong therapy, Pawar informed the Lok Sabha in a written reply.

The minister also said eight CoEs have been identified for diagnosis, prevention, and treatment of rare diseases, while five nidan kendras have been set up for genetic testing and counselling services.

In order to receive financial assistance for treatment of rare disease, a patient may approach the nearest CoE, the minister added.