AIIMS-Jodhpur becomes 1st centre of excellence for rare diseases in Rajasthan, Health News, ET HealthWorld

AIIMS-Jodhpur becomes 1st centre of excellence for rare diseases in Rajasthan

Jaipur: The Union health ministry has declared All India Institute of Medical Sciences (AIIMS), Jodhpur, as centre of excellence for rare diseases under National Policy for Rare Diseases (NPRD) 2021. It is first such centre in the state.

The centre of excellence will help patients who require treatment costing lakhs of rupees annually to cure their rare diseases. Under the NPRD, 2021, launched for treatment of rare disease patients, provision has been made for a financial support of up to Rs 50 lakh to patients suffering from any category of rare diseases and for treatment in any centre of excellence mentioned in NPRD-2021, outside the Umbrella Scheme of Rashtriya Arogaya Nidhi. Now, the number of such centres in the country has increased from nine to 10 with AIIMS Jodhpur being declared as one of them.

Lysosomal storage diseases are rare, complex, heterogeneous, and require a sustainable support mechanism for diagnosis and treatment. These genetic diseases are chronic, debilitating and result in fatal disorders, often requiring long-term, specialised treatment and management. Any delay in treatment will put the lives of patients in grave danger. In August 2022, the Union ministry of health had given operational directives to centres of excellence to treat such diseases and utilisemoney. Sadly, not a single patient has been treated at any of these centres, so far, though three months have lapsed. Government health agencies and organisations such as the Lysosomal Storage Disorders Support Society should take a proactive role and ensure treatment of patients, mostly children who are at high risk, with these rare disorders.Times view

AIIMS-Jodhpur will be the premier government tertiary hospital with facilities for diagnosis and treatment of rare diseases. Besides, the state government-run J K Lon Hospital in Jaipur has also sent the application for being declared as centre of excellence for rare diseases but still it is pending.In order to receive financial assistance for treatment of rare disease, the patient of the nearby area may approach the nearest centre of excellence to get him assessed and avail the benefits.

Dr Ashok Gupta, chairman of technical committee on rare diseases, Rajasthan, said, “We have sent the application for declaring J K Lon Hospital as centre of excellence for rare diseases as we have developed almost all the facilities for being declared as such a centre.” J K Lon Hospital is providing treatment to rare disease patients and have a separate centre for it.

J K Lon Hospital has begun providing treatment for rare diseases to six patients on the directions of Rajasthan High Court. Since, the hospital has developed the facilities for treatment for rare diseases, it has written to the Centre for allocation of centre of excellence.

If the J K Lon Hospital gets the centre of excellence, it would develop standard operating protocols to be used at various levels of care for patients with rare diseases to improve early diagnosis, better care coordination and quality of life.

Besides, the responsibilities and activities of the centres of excellence would include, education and training at all levels, screening of antenatal, neonatal (specified disorders), high risk screening, diagnostics- cytogenetic, molecular and metabolic, prevention by prenatal screening and diagnosis, research in the area of low cost diagnostics and therapeutics and treatment of rare diseases. However, it seems that all is not well in existing centre of excellence.

Manjit Singh, president Lysosomal Storage Disorders Support Society (LSDSS), said, “It has been over two months since the Union health ministry issued guidelines to centres of excellence towards the utilisation of the Rs 50 lakh per patient grant for rare disease treatment but most of them have not initiated any steps to implement it.

While the ministry is concerned and committed on this sensitive issue, the onus is on all centres of excellence to process the applications of eligible patients and recommend the same to the ministry to source the funds. Sadly, some of the centres are not entertaining the request applications of patients who have been approaching them and who come from far and near from different parts of the country.”

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Author: DelhiStyle

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