Earlier this year a draft national policy was approved which could have seen the allocation of a potential 100 crore to the research and treatment of rare diseases. Abruptly, the Centre has withdrawn the policy. Rare diseases cumulatively affect around 350 million people. The bill was initially passed on May 25 this year. However, such an elongated drafting period led to accusations that the government are dragging their feet on the matter. 

The issue is not helped by the myriad of conditions that may fall under the criteria for the disease, many of which have no specific treatments and so are difficult to legislate. Finally, a gazette notification issued on December 19, 2018 by the Union Ministry of Health and Family Welfare stated, “The central government has decided to review the policy in light of information and updates received for further improvement. It has been kept in abeyance till a revised policy is issued.” 

Committees are dragging their feet on the issue

Websites such as DownToEarth have suggested that the government are dragging their feet on the issue. A ten member committee was declared to have been formed by December 16, though when DownToEarth contacted Ajay Kumar, he claimed that by the end of December the committee had no meeting of the committee had taken place as of yet. 

Among one of the primary duties is this committee is to define what falls under the criteria of a rare disease within India. “This is no less than criminal. People are dying due to lack of medicines and you say you are looking for definitions. You can define and improvise that definition in time, but till then you can at least start giving them medicines,” said Prasanna Shirol.

The difficulty of legislating policies for thousands of diseases

Though the classification of rare disease has no formal definition, it is loosely considered that those diseases that affect fewer than five to seven people per 10,000 population are deemed “rare diseases”. The diseases are often highly expensive to treat due to targeted medications being limited. About 95 percent of rare diseases have no approved treatment and less than one in ten patients receive disease specific treatment. Due to the rarity of the conditions, drugs are often an uncommon and expensive commodity. This considerably drives up the prices of the drugs and often leaves sufferers unable to afford treatment.

“We did not have any problem. We can only infer that the government had no intention, whatsoever at all, to implement its own policy and therefore this step was taken,” says Ashok Agarwal. More attention is, however, being paid to rare diseases. The Indian Council for Medical Research has put out a proposal for a national registry of rare conditions. This may translate into more research and funding allocated to tackle the diseases.