Bengaluru: The Karnataka High Court has issued a notice to the Centre in connection with the medical treatment of a 17-month-old baby suffering from rare Spinal Muscular atrophy (Type 1) disease.
The petition in this regard was submitted by the baby's father Naveen. The bench headed by Justice Krishna S. Dixit heard the matter on Monday.
The petitioner's counsel submitted that the baby suffered from an inherited disease. The treatment is not available in India and the vaccine has to be imported from the US, he said.
It was also submitted that the cost for the treatment is Rs 16 crore and till now Rs 8 crore has been collected through crowdfunding. The baby should be treated before 24 months from birth otherwise it can be fatal. The petitioner requested to give directions to the government to provide a deficit amount for the treatment.
The counsel for the Centre explained that there is a separate policy for the treatment of rarest of rare diseases and medical experts have to take a call on it.
The bench after hearing submissions said since it is a question of the life of the baby, the Central government should make its stand clear on the matter as early as possible and adjourned the matter to October 1. The court also issued notice to the Central government in this regard.
Spinal Muscular Atrophy (SMA) is an inherited disease that affects nerves and muscles, causing muscles to become increasingly weak. It mostly affects infants and children.
What the government policy says
A ‘rare disease’ is defined as a health condition that affects a small number of people. While there is no universally accepted definition of rare diseases, countries typically arrive at their own descriptions, taking into consideration disease prevalence, its severity and the existence of alternative therapeutic options.
Under the Indian National Policy for Rare Diseases 2021, notified on March 31, financial support of up to Rs2,000,000 rupees can be provided for one-time therapy/treatment of rare diseases.
This aid is available for around 40% of those eligible under Ayushman Bharat Pradhan Mantri Jan Arogya Yojana. The NPRD does not provide any financial support for those who need more long-term, expensive treatments. For these patients, the government intends to set up a crowdfunding platform.
