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The Union government has now allocated Rs. 50 lakh per patient who is suffering from rare diseases. The financial assistance will be given to each patient through the 8 Centres of Excellence (CoE) identified by the government where the treatment is being administered either as out-patient or in-patient.
These are AIIMS, Delhi; Maulana Azad College, New Delhi; Post Graduate Institute of Medical Education and Research, Chandigarh; Nizam Institute, Hyderabad; King Edward Medical College, Mumbai; Centre for Human Genetics in Bengaluru; Sanjay Gandhi Post Graduate Institute, Lucknow and Institute of Post Graduate Medical Education and Research, Kolkata.
This assistance according to the government will not be given directly. However, staggered disbursement of funds could be allowed but with the limit only up to Rs. 50 lakh. For instance, in a case where the total cost of treatment is Rs. 45 lakh which is spread over 4 to 5 years, the fund will be released till it reaches this amount. Also in a situation where the cost of treatment is Rs. 20 lakh and patient has recovered, then the balance amount can be given if there is a recurrence of the disease in the subsequent year.
There will be no additional amount offered even if the treatment exceeds Rs. 50 lakh. Further in view of the resource constraints and compelling disease priorities, the option of crowd funding is announced where the COEs would provide the treatment cost and the remains of the funds can be used for research. The CoEs have the option to seek funds from the corporate houses under their corporate social responsibility and even from pharma manufacturers.
The cost of consumables and kits is also high, the government noted that provisions could be made to provide the funds as and when needed. Every CoE will have a rare disease committee and a member secretary and could opt for an outside expert too. The committee will need to take a decision within four weeks of receiving the application for funding.
The NRDP has mandated creation of a data bases through the national registry of rare diseases in to facilitate easy flow of patients to the concerned nodal officer from all departments.
The first group of diseases and disorders open to one-time treatment are Lysosomal storage disorder (LSD) Adrenoleukodystrophy, immune deficiency disorders like severe combined immunodeficiency, chronic granulomatous disease, Wiskot-Aldrich syndrome, osteoporosis and Fanconi anemia. Then there are also diseases related to liver and renal transplantation. The second group of diseases are PKU, maple syrup urine disease, urea cycle enzyme defects. The third group of diseases includes Gaucher diseases, Hunter syndrome, Fabry disease, to name a few.
Lauding the financial assistance of Rs. 50 lakh per patient for rare diseases irrespective of the economic background, Prasanna Shirol, co-founder and executive director, ORDI and Rare Disease Patient Advocate, noted that it was truly an inclusive policy for all and a welcome step symbolic for India as it celebrates its 75th Independence Day.
It is like a freedom for us in India to the majority of the patients diagnosed and suffering from rare diseases. This is going to benefit the majority patients who require treatment, onetime procedures like transplantation, stem cell therapy, bone marrow transplantation etc, he added.
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