PUNE: The new revised policy by the Centre, unlike the previous policy, has no mention of the state and Centre-level committees to address the burden of rare diseases. However, the new draft outlines crowdfunding platforms, where corporates can donate funds for patients while the Centre is shying away from its responsibility.
The new draft states: “Keeping in view the resource constraints and competing health priorities, it will be difficult for the government to fully finance treatments of high-cost rare diseases. The gap can, however, be filled by creating a digital platform for bringing together notified hospitals, where such patients are receiving treatment, and prospective individual or corporate donors willing to support treatment of such patients.”
However, in the previous policy of 2017, the policy clearly stated that the creation of state and Centre-level committees and 60:40 ratio of funds by the Central and State governments, respectively.
Sharing the concern, Prasanna Shirol, Co-Founder and Director of Organisation for Rare Diseases India (ORDI), said that in the present draft, there is no mention of these committees.
“The government simply expected the patients to seek crowdfunding while they are totally neglecting their duty of providing these patients with some financial help. Also, the families of the patients also need assistance. And older patients need help within home stay. All of this is expensive while the government has not considered anything in the new draft. What happened to the 60:40 ratio of government funds for rare diseases patients by the Centre and the state. This new draft has no mention of it,” said Shirol.
Sharing similar views, Vikas Bhatia, who works with Metabolic Disorders and Rare Diseases (MERD) Organization of India, said that at least the government can help with reducing the cost of specific medicines.
“Some patients with rare diseases need formula food such as those who are intolerant to lactose. The government can at least make these readily available to patients to help them manage the disease at lower costs and lead a healthier life,” said Vikas Bhatia.
2017 POLICY’S PLUS POINTS
- As per the 2017 policy, a Technical-cum-Administrative Committee at the Central as well as state levels was expected to be formed for the management of corpus funds and developing technical guidelines and criteria for - which rare diseases to fund, to what extent, review of treatment etc.
- In addition, a corpus fund at the Central and State levels was to be created for part-funding treatment of rare diseases on the basis of technical criteria developed by Technical-cum-Administrative Committee.
- A web-based application was to be developed for aiding the online application process to access the corpus funds.
