Amyotrophic Lateral Sclerosis

• 21 Aug 2023

For Prelims: Amyotrophic Lateral Sclerosis, Neurodegenerative Disease, National Policy for Rare Diseases (NPRD), World Health Organization.

For Mains: Amyotrophic Lateral Sclerosis and Challenges with it.

Source: TH

Why in News?

Amyotrophic Lateral Sclerosis (ALS), a debilitating Neurodegenerative Disease, presents a range of challenges for both patients and caregivers in India.

• Despite its rare occurrence, ALS profoundly impacts the lives of those affected due to its progressive nature and lack of effective treatment.

What is Amyotrophic Lateral Sclerosis (ALS)?

• About:
  • ALS is a rare and fatal type of motor neuron disease. It is characterized by progressive degeneration of nerve cells in the spinal cord and brain.
    • It's often called Lou Gehrig's disease, after a famous baseball player who died from the disease.
  • ALS is one of the most devastating of the disorders that affects the function of nerves and muscles.
  • As motor neurons degenerate and die, they stop sending messages to the muscles, which causes the muscles to weaken, start to twitch (fasciculations), and waste away (atrophy).
  • Eventually, the brain loses its ability to initiate and control Voluntary Movements.
    • The movements that are under our control are called voluntary actions, such as walking, running, sitting etc.
    • On the other hand, the movements that are not under our control are called involuntary movements.
• Causes:
  • Causes are not yet, in a few cases, genetics is involved.
  • ALS research is looking into possible environmental causes of ALS.
• Symptoms:
  • With ALS, there may be weakness in a limb that develops over a matter of days or, more commonly, a few weeks. Then, several weeks to months later, weakness develops in another limb. Sometimes the initial problem can be one of slurred speech or trouble swallowing.
• Treatment:
  • There is no cure and proven treatment for ALS.

What are the Initiatives to Tackle ALS?

• The Government's National Policy for Rare Diseases (NPRD), 2021, introduced a significant provision offering financial aid of up to Rs. 50 lakh to patients afflicted by Rare Diseases and receiving treatment at designated Centers of Excellence.
  • The World Health Organisation (WHO) characterizes rare diseases as debilitating conditions with a prevalence of 1 or less per 1000 population.
• This policy initiative aims to support individuals, including those with conditions like ALS, by providing substantial financial assistance for their treatment.