As the Ministry of Health and Family Welfare has failed to proceed with funds for the King Edward Memorial (KEM) hospital in Parel, which was chosen as one of the 10 Centres of Excellence (CoE) for rare diseases, the BMC has decided to look after the financial constraints after reviewing the patient files.
The CoE in KEM has the third highest patient load, which is 83 patients – all children. As per officials, the total funds required for the treatment is more than ₹80 crore, and the hospital received only 0.004% of the total requisite funds.
“The Government of India has started a website for a Digital Portal for crowdfunding and voluntary donations for patients of rare diseases where people can donate money (minimum ₹50) even online. Only ₹2,54,095 has been received for 666 patients who have been registered to 10 CoE across India,” said an official.
Centre had announced it will provide financial support of upto ₹50 lakh
The Centre in May 2022 announced that it will provide financial support up to ₹50 lakh to patients suffering from any category of rare diseases who are being treated in CoEs across the country. Now it has allowed the CoEs to seek financial assistance from drug manufacturers and the corporate sector under their Corporate Social Responsibility (CSR) scheme.
As per the data provided at the official portal of rare diseases, currently, 666 patients with rare diseases are admitted to 10 centre of excellence for treatment, of which Mumbai stands in third position as 83 patients are registered with centre in KEM hospital. Among the 83 patients, 20 are in urgent need of treatment which costs around ₹4.81 crore.
Treatment costs varies based on rare diseases patient is suffering
“The treatment cost ranges from ₹6.9 crore to ₹65,576 which varies based on rare diseases the patient is suffering,” said a doctor.
Meanwhile, 30 patients suffering from a rare genetic disease, known as Duchenne muscular dystrophy (DMD) had filed a petition in the Bombay High Court in March this year urging it to direct the central and state governments to provide treatment to them and similarly affected children at subsidised rates or free of cost.