Centre's policy for treating rare diseases

Ending the prolonged wait, the Central government has come forth with a national policy on rare diseases. "Beneficiaries financial assistance under the scheme will not be limited to BPL [Below Poverty Line] families, but the benefit will be extended to about 40 per cent of the population who are eligible under the Pradhan Mantri Jan Arogya Yojana," the health ministry said in a statement.

Hyderabad: Along with the Apex court, several High Courts too have made observations filled with compassion, regarding the diagnosis and treatment of rare diseases. The court rulings emphasize the need for government intervention to tackle the diseases.

Drawing curtains to the prolonged wait, the Central government has come forth with a national policy on rare diseases. A disease that afflicts two or more persons in a 5000 population is considered a rare disease. Defined variously in different parts of the world, there are 7000 to 8000 rare diseases in India and around 7 crore persons are afflicted by them, say the experts. More than 80 per cent of these diseases are caused by genetic defects. Less than 5 percent of these diseases have treatment worth mentioning.

Proper medication is not available for the rare diseases that make the patients suffer for years at a stretch. The available medicines are too costly to be afforded by the common people. Corrective measures were planned with a national policy way back in 2017, but the government plans have finally come to fructify after a long wait.

Union Minister for Health, Dr Harsh Vardhan has stated that the National Policy for Rare Diseases 2021 has been approved. While making the announcement, he went on to add that the policy aims to lower the high cost of treatment for rare diseases, with an increased focus on indigenous research and local production of medicines. "Beneficiaries financial assistance under the scheme will not be limited to BPL [Below Poverty Line] families, but the benefit will be extended to about 40 per cent of the population who are eligible under the Pradhan Mantri Jan Arogya Yojana," the health ministry said in a statement.

Except in Karnataka, nowhere else in India is there any scheme that is beneficial to citizens suffering from rare diseases. Under the new policy, the Center is assuring that it would extend upto Rs 20 lakh as assistance under the Rashtriya Arogya Nidhi. However, it is felt that there is still more left to be done.

India enjoys 20 per cent share in the world’s generic medicine market. With 62 per cent share in the vaccine market, India is aptly described as the pharmacy of the world. Then why is there so much delay in developing medicines to treat rare diseases? It is not because India lacks the capacity to develop medicines. Even though the pharma industry is not hesitating to invest efforts and resources in the research, the limitations of such medicines when compared with medicines for common diseases are preventing them from proceeding further. As a result, India is left to solely depend on imports. Encouraging research by domestic organizations is the best way to free ourselves from dependence on foreign countries.

The government sources do not seem to have properly ascertained the facts while deciding the maximum financial assistance of Rs 20 lakh for one-time treatment.

If a child weighing 10 kgs suffers a rare disease, Rs 1 crore would be required annually for his treatment. The required expenditure will grow along with his weight and age. Can a common family bear such huge expenses? The national policy, however, remains silent on the patients requiring lifetime treatment. The government has permitted the collection of donations from corporate organizations and individuals. It should also agree to generously respond towards seekers of help on a case by case basis.

Statistics are stating that the total number of persons suffering rare diseases across the globe has crossed the total population of America. Countries like France, Germany, UK, Canada, Bulgaria and Argentina are already giving effect to strategies to keep rare diseases in check. With the support of its own merit, India should draw lessons from those countries and move forth with a perfect action plan.