Wrong actions may sometimes be motivated by the right reasons. Last year, in a shocking volte-face, the Union ministry of health and family welfare decided to withdraw the national policy for treatment of rare diseases that had been announced in 2017. It also revealed that the Rs 100-crore corpus for the treatment of rare diseases had not been created, even though the ministry had assured the apex court in a memorandum that it had. Worse, some 180 patients — many of them children — had already applied for aid. A number of them died waiting to be accepted, while the hopes of others were cruelly dashed. Even though its step was unconscionable, the ministry was right when it said that the policy was flawed. It has now said that a new draft policy will be notified after nine months. But before that, significant time must be devoted to understanding and outlining a definition for rare diseases, which was missing in the previous document. In the European Union, for instance, a disease that affects fewer than five in 10,000 people is considered rare. In fact, the biggest hurdle to formulating a policy on such diseases is lack of awareness. It is ignorance that led the ministry to assign the corpus creation to the National Health Mission, which is in charge of primary and secondary healthcare. It was unaware that rare diseases fall under tertiary healthcare, requiring specialists in large hospitals.

The other obstacle is India’s paltry health budget — two per cent of the gross domestic product — which is insufficient for providing even basic healthcare. Moreover, a significant portion of the budget is dedicated to the much-touted Ayushman Bharat scheme that is of no use to people with rare diseases, which are usually genetic and, as such, outside the ambit of insurance. Meagre funds make spending on rare diseases a utilitarian calculation — the scrapped policy allocated funds to treat a few select rare diseases, excluding untreatable ones altogether. Not only does this make healthcare a numbers game, it is also a violation of the right to life guaranteed by the Constitution. The latest policy should thus apportion substantial resources to research aimed at finding new and cheap treatments. A look at policies from other countries will show that besides providing cost-effective treatment, attention is also paid to in-vitro and newborn screening for early detection of rare diseases. Low incidence means rare diseases are seen as “unprofitable” and businesses are reluctant to invest in them. This neglect can only be overcome by strong support from the government, which has a duty to treat all its citizens equally.