With 70 million in India suffering from rare diseases, policy expansion needed

The national policy for rare diseases which the government has released for public comments makes a beginning in an area where no coherent policy existed until now. The policy seeks to lay down a framework for treatment of rare diseases and to improve the scientific and medical understanding and expertise to deal with them. The main highlight of the policy is the provision for a one-time payment of Rs 15 lakh as cost of treatment for those who suffer from certain rare diseases. This will be done under the Ayushman Bharat’s Arogya Nidhi scheme. While the scheme gives financial assistance only to those below the poverty line, others will also benefit under the rare diseases policy. Some major medical institutes in the country will be notified as centres of excellence for the treatment of patients with rare diseases.

One-time assistance is not enough for treatment of most rare diseases as many of them require long and sometimes life-long treatment. The policy suggests crowd-funding or corporate donations to meet additional costs, but this is an uncertain source of financing and may not be available to many. The policy admits that the government is not in a position to meet the cost of treatment which is often expensive. This again draws attention to the low allocation for health in the country. Most of those who suffer from rare diseases are not entitled to insurance because many of them are genetic. Another drawback of the policy is that its scope is limited to only a few rare diseases which can be cured by treatment or by organ transplants. It does not cover a large number of diseases which demand costly treatment. For them also, the policy suggests other ways of funding. It sounds odd when government policy advises people to fend for themselves in a matter which falls within its responsibility. Public health challenges from common diseases which affect millions of people are more important, but the government’s record in meeting them is also poor.

The policy says that R&D should be promoted to tackle rare diseases, but proposes no programme for it. While private companies will not be interested in such research, government agencies are usually found wanting in any research. Such research also needs a better scientific and technological base than is available in India. This needs to be built up. It is estimated that about 70 million people suffer from rare diseases in the country and many of them are life-threatening. It is important to extend help to them and to find a cure for the diseases. The new policy is a step forward in that direction but needs much improvement and effective implementation.