Doctors' body flags lack of rare disease centres in MP medical colleges

Bhopal: Despite the government opening new medical colleges every year, patients with rare diseases in Madhya Pradesh are still not receiving proper treatment at state-run medical colleges due to the absence of dedicated Centres of Excellence (CoE).

Speaking to Medical Dialogues, Dr Akash Soni, National Executive of FAIMA, Madhya Pradesh, said the core issue is not just the lack of infrastructure, but also the absence of specialised departments and recruitment of trained medical professionals, especially for the treatment of rare diseases.

He stressed the need to establish rare disease treatment centres in government medical colleges, adding that at least a concrete initiative should be taken in this direction. He pointed out that the Central government provides up to Rs 50 lakh per patient due to the high cost of treatment. With medical colleges in Bhopal, Jabalpur and Rewa expanding services, he said these institutions should prioritise setting up such centres.

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The National Policy for Rare Diseases, 2021 (NPRD 2021) is a health policy launched by the Government of India to improve the diagnosis, treatment, and management of rare diseases in the country. The government provides up to Rs 50 lakh per patient for certain rare diseases that require expensive treatment. Selected top government hospitals are designated as Centres of Excellence for diagnosis and treatment. At present, only AIIMS Bhopal has one such centre. 

Explaining the reason behind such shortcomings, Dr Soni said, "Basically, there is no dedicated clinic for rare diseases like genetic disorders. Many medical colleges don’t even have full-fledged super-speciality branches."

He further pointed out that the government has focused more on opening new medical colleges rather than strengthening speciality and super-speciality departments in existing institutions.

"They are opening one new medical college after another, but no one is talking about building proper speciality departments or hiring experts for them," Dr Soni added.

He highlighted that one of the biggest concerns is the lack of recruitment in super-speciality departments. 

"The government may start a department, but without new recruitment, it doesn’t serve its purpose. If the government want to build Centres of Excellence, they need to hire new talented doctors, which is not being followed in many departments," he said.

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