Cost Of Rare Diseases

The Ministry of Health and Family Welfare has introduced a draft National Policy for Rare Diseases 2020 on the direction of the Delhi High Court in response to a plea filed seeking free treatment of rare diseases

- Gautam Mishra

While recognising inadequacies in the rare diseases treatment system in In dia, the Delhi High Court had mentioned certain facts last year while hearing a writ appeal filed by FSMA India Charitable Trust. By coincidence, the observation of the Court came a day after the Union Ministry of Health and Family Welfare came out with the draft of the National Policy for Rare Diseases 2020, which is now awaiting finalisation.

The ministry has published the draft for the treatment of 450 rare diseases and has made a provision for a registry of rare dieases and has made provision for a registry of rare diseases to be maintained by the Indian Council of Medical Research. The draft policy envisages bringing down the incidence of rare diseases through an incorporated preventive methodology.

Patient care groups had brought to the attention of the court than more than 50 pateints generally young people had so far lost their lives awaiting the benefits of the National Policy for Rare Diseases 2020 and bereft of financing support from the public authority. Apart from these 50 patients, there are 280 others who had enrolled themselves with the Rare Illness Cell of the Ministry of Health and Family Welfare, seeking help for treatment.

Technically, a “rare disease” is characterised as a medical issue of low pervasiveness that influences a few individuals when contrasted with the predominant diseases. While there is no generally acknowledged definition of rare diseases, nations generally devise their own portrayals, based on disease predominance, its seriousness and the presence of remedial choices.