Background
In the instant case FSMA India Charitable Trust v. Union of India A petition was submitted in support of creating cheap medications and treatments for kids with the uncommon condition of Spinal Muscular Atrophy. The FSMA India Charitable Trust, an organisation founded by relatives of SMA patients, claimed that SMA is a rare, progressive, neuromuscular hereditary condition that needs ongoing pharmacological intervention. Many people need treatment, and the cost is high. In India, three SMA medicines are offered by Biogen, Novartis, and Roche. The price of a bottle of the Roche drug Evrysdi-Ridisplam in India is Rs. 6,23,000, and a patient weighing over 20 kg needs 36 bottles a year. The identical drug, however, costs less than 1/10th of what it does in India in China and Pakistan. The goal of the petition is to reduce the cost of providing children with uncommon disorders like SMA with medicine and medical care.
Observation of court
A single-judge bench of Delhi High Court Justice Prathiba M. Singh ordered that the National Rare Disease Committee invite manufacturers and distributors of SMA medications to investigate the possibilities of obtaining the drug at a fair price. The Committee was also ordered by the Court to submit a status report on its negotiations with businesses that produce and commercialise medications for rare illnesses before the next hearing date.
The Court has been dealing with writ petitions submitted by patients suffering from uncommon disorders such as DMD, Gaucher, and Hunter’s syndrome. The National Rare Disease Policy, 2021, was put into place by the Court with the help of a Committee. It calls for the purchase of treatments and medications, the development of a logistical plan for their administration, suggestions for steps to be taken to make treatments and medications more indigenous, and ensuring lakhs of patients’ accessibility. The Policy will also be periodically reviewed by the Committee, and if modifications are required, they will be suggested to the Ministry of Health and Family Welfare.
The Committee has been ordered by the Court to consult with businesses like Sarepta and Sanofi to come up with a more affordable cost for treatments for children with rare diTo find medication for SMA sufferers, the Committee is thinking of talking to these businesses. The Committee was instructed by the Court to analyse the note provided by the respondent’s legal counsel and contact firms that produce and distribute SMA medications to see whether there is a way to find them at a fair price. The Court is of the opinion that successful considerations and supportive answers from businesses would have a major positive influence on the lives of children with rare illnesses. By the time of the upcoming hearing, which is slated for March 8, 2023, the Committee is required to submit a progress report on its discussions with businesses.
CASE NAME – FSMA India Charitable Trust v. Union of India, W.P. (C) 11610 of 2017