The policy had been formulated in 2017, but has been updated keeping in view the suggestions and feedback from various stakeholders
Rare diseases listed out by Union Health Ministry! Updating its 2017 policy on rare diseases, the Union Ministry of Health and Family Welfare on Monday published the National Policy for Rare Diseases 2020. The policy has been updated keeping in view the suggestions and feedback from various stakeholders and in consultation with the state governments. The policy enlists as many as 450 rare diseases prevalent in India. However, the policy does not elaborate on the treatments for these conditions. Since India does not have adequate data to recognise rare diseases in terms of prevalence, as done across the globe, the ministry has divided the diseases into three categories – diseases that can be treated with a one-time curative treatment, diseases which need long-term treatment and are inexpensive, and diseases needing life-long treatment and are expensive. According to the ministry, as many as 95% rare diseases do not have approved treatments and only 10% people receive disease-specific treatments.
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According to the report, Haemophilia, Thalassemia, Sickle cell anaemia and Primary ImmunoDeficiency in children, auto-immune diseases, Lysosomal storage disorders such as Pompe disease and Gaucher’s disease have been listed among the rare diseases. Globally, as many as 7,000 to 8,000 diseases have been recognised to be rare. However, tertiary care hospitals have only recorded 450 of these diseases. Apart from this, the policy also intends to have the Indian Council of Medical Research to maintain a registry on rare diseases in India.
While formulating the policy, the ministry also had to deal with the question on the kind of assistance the government can provide to patients suffering from such diseases. It has been decided that the Centre will provide financial assistance of up to Rs 15 lakh to patients suffering from rare diseases that require one-time treatment. These patients must be covered under the Pradhan Mantri Jan Arogya Yojana and they must seek treatments at government tertiary hospitals. The policy further added that the state can consider providing assistance to patients suffering from rare diseases that require long-term low-cost treatments. Apart from that, the government will also form a portal as an alternative funding mechanism for individuals and corporates to donate for the treatments of patients.
An IE report quoted Lysosomal Storage Disorder Support Society President Manjit Singh as saying that this measure is highly inadequate.
Rare disease treatments are expensive due to small target group and high cost of research and development of medicines. Due to this, not many pharmaceutical companies manufacture drugs to treat rare diseases. India has no domestic manufacturers. The policy has estimated that for a child weighing 10 kg, the treatment cost falls between Rs 10 lakh and Rs 1 crore every year, and this cost increases as a person ages.