You must have often read on social media or in the news that such and such a child needs an injection worth Rs 17 crore. He is suffering from a rare disease. His parents are very poor. If he does not get the injection, the child will die.. Or you might have heard that an injection worth Rs 18 crore was ordered from America for such and such a child. Now the child is completely fine.. Have you ever wondered what are these diseases whose treatment is so expensive? Why do injections or medicines come from outside? How do poor parents manage to save Rs 17-18 crore to save the life of their child? Does it also happen that so much money is not collected and the child loses his life?… Today we are giving answers to all these questions of yours in this news.
What is a rare disease?
Such cases are of rare diseases. Usually this is a congenital disease and is mostly found in children only. According to the National Policy for Rare Diseases 2021 made by the Indian Ministry of Health and Family Welfare, there is no complete data regarding rare diseases and patients suffering from them in India, although ICMR is trying to prepare it.
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However, there are guidelines from the World Health Organization regarding rare diseases. WHO considers such a disease as a rare disease which occurs in 1 out of 1 thousand children or this disorder is lifelong, although all countries have different policies and different standards to consider any disease as rare. It all depends on the healthcare facilities and population present in that country.
How many rare diseases are there in the world?
There are 7 to 8 thousand rare diseases in the world, out of which only 5 percent has treatment available. The correct treatment for 95 percent of diseases is not known. This is the reason why only 1 in 10 people is able to get proper treatment for their rare disease. Even if the medicine is available, it is so expensive that it is difficult to obtain.
Why is medicine for rare disease worth crores?
According to NPRD, the number of patients suffering from rare diseases is very less, hence no drug manufacturer takes the trouble to research and make these medicines quickly. This results in what are known as orphan diseases or orphan drugs. No local manufacturer in India makes medicines for rare diseases, whereas globally only a few manufacturing companies are making these medicines. Due to it being such an expensive treatment, even the Government of India is not able to provide it free of cost.
The treatment of rare diseases is so expensive that lakhs of people suffering from minor diseases are treated in this time. This can be understood like this, for example, a child weighing 10 kg suffering from a rare disease, the annual treatment cost ranges from Rs 10 lakh to Rs 1 crore, which increases with age and weight. Whereas many children require only one injection or injection, the cost of which can range from Rs 10 crore to Rs 30 crore.
Why do expensive injections and medicines come from America and Canada?
Orphan Drug Act is applicable in US and Canada. Therefore, the government also gives incentives to drug manufacturing companies here. This is the reason why manufacturers prepare these medicines by increasing their prices and taking incentives from the government. This is the reason why most of the medicines for rare diseases have to be procured from these countries.
These are common rare diseases in India..
, Primary immunodeficiency disorder
, Lysosomal storage disorders (Gaucher’s disease, Pompe disease, Fabry disease, mucopolysaccharidoses, etc.)
, Small Molecule Inborn Errors of Metabolism (Maple Syrup Urine Disease, Organic Academia)
, cystic fibrosis
, osteogenesis imperfecta
, muscular dystrophies
, spinal muscular atrophy
Treatment is done in these 8 hospitals in India
National Registry for Rare Diseases has been opened by ICMR in hospitals, where diagnosis and management of rare diseases is done, along with the data of patients is also maintained.
There are 8 centers of excellence for the treatment of rare diseases in the country. Of which two are in Delhi. These centers are in these hospitals.
, AIIMS New Delhi
, Second Maulana Azad Medical College
, Sanjay Gandhi Post Graduate Institute of Medical Sciences Lucknow
, PGI Medical Education and Research Chandigarh
, Center for DNA Fingerprinting and Diagnostics with Nizam Institute of Medical Sciences Hyderabad
, King Edward Medical Hospital Mumbai
, Institute of Post Graduate Medical Education and Research Kolkata
, Center for Human Genetics with Indira Gandhi Hospital, Bangalore
How much financial assistance does the Government of India provide?
According to NPRD 2021, for rare diseases that require one-time treatment, the Government of India gives a grant of only Rs 20 lakh under the National Health Fund. For this, it is not necessary for the beneficiary to be a BPL holder, rather he should be a part of the 40 percent population who can get treatment under the Pradhan Mantri Jan Arogya Yojana.
However, in a reply given in the Rajya Sabha in December 2022, the Union Health Ministry said that under the NPRD, the Central Government provides financial assistance of up to Rs 50 lakh to a rare disease patient undergoing treatment in any Center of Excellence. This money does not go to the patient’s account but goes to the treating hospital. Apart from this, the Government of India also provides Rs 5 crore to the Center of Excellence for setup for diagnosis and treatment of diseases.
Indian government also does crowd funding
Apart from government help, the Union Ministry of Health and Family Welfare, Government of India has also prepared a portal for online crowd funding. Where hospitals notified under NPRD treating rare disease patients can provide details of the patient’s disease, his bank account and estimated cost on the portal. On this portal, any person, institution, company, firm or other people can donate for the treatment of the patient. The money given in this is also added to the CSR activities of the companies.
During this period, if more funds are received than required, then first the patient will be treated and then the hospital can use this fund for research.
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Tags: genetic diseases, Health News, Lifestyle, Medicines, muscular dystrophy disease, trending news
FIRST PUBLISHED: May 16, 2024, 17:26 IST