NEW DELHI: The Centre does not cover Amyotrophic Lateral Sclerosis (ALS) and Myasthenia Gravis, two distinct neurological disorders, as rare diseases under the National Policy for Rare Diseases (NPRD), 2021.
In a written reply in the Rajya Sabha, Minister of State for Health and Family Welfare, Prataprao Jadhav, said that the ministry identifies Spinal Muscular Atrophy (SMA) as a rare disease under the NPRD, 2021, policy
“However, Amyotrophic Lateral Sclerosis/Motor Neuron Disease and Myasthenia Gravis are not covered under this policy,” he added.
Spinal Muscular Atrophy (SMA) in India has an estimated prevalence of 1 in 7,000 to 10,000 live births. High costs of therapy remain the primary challenge.
Under the NPRD, 2021, financial assistance of up to Rs 50 lakhs is provided as per the extant guidelines for treatment of patients suffering from Rare Diseases identified under the policy.
The fund is released based on the recommendation of the Rare Disease Committee at the designated Centres of Excellence (CoEs).
More than 1700 patients have benefited under this policy during the last two years, the Minister said.
He further said that the government already provides complete exemption from Basic Customs Duty (BCD) and Integrated Goods and Services Tax (IGST) on drugs, medicines and Food for Special Medical Purposes (FSMP) for treatment of Rare Diseases identified under the policy, for personal use or use through the designated CoEs, subject to extant rules.
ALS is one of the motor neuron diseases. It is a progressive, neurodegenerative disease that affects the brain and the spinal cord, resulting in the loss of muscle control. It causes difficulty in walking, swallowing, and moving.
It gradually makes breathing difficult. There is no cure for the disease. There are several treatment options available that can alleviate symptoms and help ALS patients prolong their lifespan.
Myasthenia Gravis is a severe autoimmune neuromuscular condition that causes skeletal muscle weakening. It develops when the connection between nerve cells and muscles is disrupted, and this dysfunction prevents essential muscle contractions from functioning, leading to muscle weakening.
There is no known cause or treatment for this rare disease, but experts said that early diagnosis and immediate medical intervention can help patients live longer, more active lives.
