Talking globally, there are more than 7000 such diseases in the world, which are considered rare. Some of the prominent names include Hittington’s disease, Cystic fibrosis and Muscular dystrophy.
National policy approved for treatment of rare diseases
The Union Health Ministry has approved the National Policy 2021 for rare diseases. Under this, the government will provide financial assistance up to Rs 20 lakh for the treatment of rare diseases under the Arogya Nidhi Yojana. The aim of this policy is to encourage indigenous research and local production of medicines, as well as to reduce the cost of expensive treatment of rare diseases.
Under the Arogya Nidhi Yojana, assistance up to Rs 20 lakh will be called for the treatment of those rare diseases, which are listed under group one in this policy. Under this scheme, not only BPL families will get benefit, but under the Pradhan Mantri Jan Arogya Yojana, 40 percent of the eligible population will be benefited.
The Rashtriya Arogya Nidhi aims to provide financial assistance to patients living below the poverty line under the Rare Disease Policy. The Ministry of Health and Family Welfare will provide financial assistance under its Umbrella scheme ‘Rashtriya Arogya Nidhi’ (Rashtriya Arogya Nidhi).
What are the rare diseases
Rare diseases means such a health condition or disease, which is found in very few people. As is evident from the word Rare, ‘rare’, such diseases are found only in very small or counted people compared to common diseases. There is no universal definition of rare diseases. Rare diseases have different meanings in different countries. However one thing that is common is that 80% of rare diseases are genetic and hence have the opposite effect on children.
According to national policy, rare diseases include Genetic Diseases, Rare Cancer, Infectious Tropical Diseases and Degenerative Diseases.
It generally has three categories.
- The first– Remedial ie diseases responsible for one-time treatment. That is, the cost for treatment should be lump sum and very expensive. Some of the diseases in this category include osteopetrosis and a deficiency in immunity.
- Second– Diseases that require long-term treatment, but the cost is low.
- The third– Diseases that are costly to treat and require long term treatment.
Rare diseases in the country and the world
About 450 rare diseases have been listed from tertiary hospitals in the country, of which hemophilia, thalassemia, sickle-cell anemia, auto-immune disease, Gaucher’s disease and system fibrosis are the most common diseases. Talking globally, there are more than 7000 such diseases in the world, which are considered rare. Some of the prominent names include Hittington’s disease, Cystic fibrosis and Muscular dystrophy.
Cystic fibrosis affects the patient’s respiratory system and digestive system, while Huttington’s disease affects the brain and nervous systems of humans. At the same time, muscular dystrophy, which affects the muscles badly. Therapies are available for the treatment of less than 5 percent of all the world’s rare diseases.
Causes of rare diseases
Senior doctor Dr. Shyamsunder Singh explains that 80 percent of rare diseases are genetic. The remaining 20 percent are caused by bacteria, viral infections and allergies due to rare diseases. Statistics show that about 50 percent of rare diseases occur only to children. Symptoms of rare diseases are also different. Even 2 patients with the same rare disease may have different symptoms.
Treatment of rare diseases
It is also too late to detect symptoms of rare diseases in the patient. Because of this, there are delays and difficulties in treatment. In this, the disease affects the patient for a lifetime. Many rare diseases are also fatal. There is either no adequate cure for rare diseases or even very complex and expensive ones.
Challenges in the treatment of rare diseases
The field of rare diseases is quite complex and wide. There are many challenges in prevention, treatment and management. Early detection of rare diseases is a major challenge, including primary care physicians, lack of adequate screening and treatment facilities. The cost of treatment of rare diseases is very high. The Supreme Court and the High Courts of many states have also stated the need for a national policy for rare diseases.
Union Health Minister Dr. Harshvardhan (Photo-PTI)
National policy made out of necessity
To address all challenges, the Ministry of Health and Family Welfare has finalized the National Policy for Rare Diseases 2021, after extensive consultation with various stakeholders and experts in the region. The policy was made public on January 13, 2020, on which suggestions, comments and views were sought from the general public, organizations, stakeholders, states and union territories. An expert committee constituted by the ministry had seriously inspected all the comments received on it. Keeping in mind all the points, the national policy was finalized.
What are the emphasis in national policy?
The policy on rare diseases is aimed at reducing the high cost of treatment of rare diseases with greater emphasis on indigenous research with the help of the National Association formed by the Department of Health Research, Ministry of Health and Family Welfare as the convener. More emphasis on research, development and local production of medicines will reduce the cost of treatment for rare diseases.
The policy also envisages creating a national level hospital-based registry of rare diseases, so that sufficient data is available for the definition of rare diseases and for R&D related to rare diseases within the country. Investigation will also be encouraged by diagnostic centers set up by the Department of Biotechnology.
Crowd funding is also provided for treatment expenses
For the treatment of rare diseases, a provision is proposed for financial support up to Rs 20 lakh under the Umbrella Scheme of the National Health Fund, which requires lump sum treatment. (This has also been mentioned above)
Apart from this, a crowd funding system is also envisaged in this national policy. In this, companies and people will be encouraged to provide financial support for the treatment of rare diseases through a strong IT platform.
Funds raised through Crowwd Funding will be used by centers of excellence as a first charge to treat all three categories of rare diseases. Apart from this, the remaining financial resources can also be used for research.
(Sources: The Hindu, The Live Mint, Drishti IAS, DhyeyaIAS, PIB)
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