According to a recent publication from Moneycontrol, patient advocacy groups in India are calling for the country’s Minister of Health and Family Welfare, Harsh Vardhan, to establish a provisional system to support the welfare of rare disease patients while the National Policy Treatment of Rare Diseases (NPTRD) is finalized.

The NPTRD

The NPTRD is the Indian government’s national policy outlining the country’s strategy for the care of those with rare diseases. It was introduced by the central government in 2017, with a financial aid endowment of nearly $14 million to invest in the care of patients with rare conditions.

In November of 2018, however, attitudes in the government had shifted. The $14 million allotment, and all accompanying policy, was suspended. The health ministry announced that the administration’s focus, going forward, would be the treatment of communicable and non-communicable diseases, rather than rare diseases.

Two patient advocacy groups, the Organization for Rare Disease India (ORDI) and Lysosomal Storage Disorder Support Society (LSDSS), have written Minister Vardhan encouraging the government to establish some kind of safety net for India’s significant rare disease community.

Rare Disease in India

Rare disease is no less common in India than other parts of the world. However, according to current guidelines in India, there is no established definition of what constitutes a “rare” disease. In the United States, rare diseases are considered to affect fewer than 200,000 people (roughly .06% of the population as of 2018). In Japan, rare diseases are considered to affect fewer than 50,000 people (roughly .04% of the population as of 2017). ORDI, one of the groups petitioning the Ministry of Health and Family Welfare, suggests setting India’s definition as affecting fewer than one in 5,000 individuals (just .02% of people).

The advocacy group notes that rare disease policy is dictated not only by a country’s population, but by its resources. India has about 4 times the population of the United States, but a GDP of only about $2.75 trillion compared to the United States’ almost $20.5 trillion. The difficulty lies not just in how to treat rare disease patients, but in determining who rare disease patients are.

Advocacy groups like ORDI and LSDSS are particularly concerned with a number of rare disease patients who had already been receiving treatment under the provision when it was suspended by the government. The patients, they argue, have already been confirmed by the government as having rare conditions. When the program was suspended, however, their treatment was stopped. These former patients are left with few options and little hope, LSDSS wrote in a letter to Vardhan.

“All we are requesting is for an interim treatment support to the children who had applied,” said ORDI’s co-founder Prasanna Shirol.

How do you think countries should determine how to allot resources to rare disease patients? How do you determine, in good faith, what a rare disease is? Share your thoughts with Patient Worthy!