Govt crowdfunding portal for rare diseases gets 31 patients registration in a week

New Delhi [India], August 18 : The government of India has started a unique initiative i.e a crowdfunding programme for the treatment of rare diseases with the help of a portal. Under this programme, corporates and individuals can donate online for the treatment of patients suffering from rare diseases.
The treatment of rare diseases is expensive and can continue for a long period.
"We don't see rare diseases common in the general public. It becomes difficult to diagnose and cost of treatment is also very high. The government has done the right thing to launch a new rare disease policy and it is a good step," said Sameer Sethi, president, Indian Rett Syndrome Foundation (IRSF)
According to a senior Health Ministry official, there are eight centres that have been authorised to receive donations and treatment in India.
These centres are All India Institute of Medical Sciences and Maulana Azad Medical College in New Delhi; Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow, PGI Chandigarh, Centre for DNA Fingerprinting and Diagnostics at the Nizam Institute of Medical Sciences, Secunderabad; King Edward Memorial Hospital, Mumbai; Centre for Human Genetics with Indira Gandhi Hospital, Bengaluru; and the Institute of Postgraduate Medical Education and Research, Kolkata.
"As per the portal, the presently registered numbers are 31. They are in different hospitals like AIIMS that has 2, Maulana Azad has 2, Sanjay Gandhi PGI and Lucknow has 12, PGI Chandigarh 4 etc. This is the portal where a donor can register himself/herself and then they can give donations hospital-wise and patient-wise."
This is not formally launched but is expected to be launched soon. "60 people have registered themselves for the donations on the portal so far. Once people will be aware about this portal, then more donations will come."
On transparency in the system, a senior health official said, "The donations will come patient wise. It will be very transparent and meant for the patients. There is an expert committee in the hospitals which will decide upon the need of the donation and what will be for the better treatment for the child. If the donation is Rs 10 lakh, then committee will decide on whom to start the treatment with first. The committee will make a mechanism."
The policy classifies rare diseases into three categories.
"The first one is of diseases that need a one-time, usually expensive treatment. Treatment for these is covered under Rashtriya Arogya Nidhi (RAN) that is dedicated fund available with the Ministry of Health for funding treatment up to Rs 15 lakh. Rare diseases like Lysosomal Storages (LSDs) or for immune deficiency disorders are classified as rare funded for Ran up to Rs 20 lakh for BPL and those who are registered under Pradhan Mantri Jan Arogya Yojna," said Samir.
Channappa, father of a patient suffering from a rare disease said, "My child is 10.5 years old. Around six years ago, we took her to different doctors but no one was able to diagnose the problem. But after this, we consulted a doctor in Indira Gandhi Hospital in Bengaluru. Later, it was diagnosed as Gaucher disease. The child should be given an injection which costs around Rs five lakh. She has to be given two injections per month and it has to be given life long."
He further said, "Central government has set up rare disease crowdfunding portal. It will help the patients who are suffering from rare diseases. Prime Minister Narendra Modi is doing great work in this regard. He is way too good."
He also urged the government to come up with an insurance facility, since they have to take injections for a lifetime.
Daughter of Channappa, who is 10.5 years old and is a patient of a rare disease, told ANI, "I don't know what exactly it is, but if I don't take injections in every 15 days, I feel my leg pain, stomach pain, tiredness. Whenever I visit the hospital, doctor talks to me about my health and asks whether I have pain and all."
"I am not scared of an injection, but whenever they give me an injection, I feel ticklish," she laughed.
"In future I have a dream of becoming a doctor," Nisarga added.
According to an estimate, 7,000 diseases are rare diseases of which 400 diseases are diagnosed in India. Seven crore people are estimated to be affected by these.