State Increases Rare Disease Coverage: SMA Treatment Extended to Young Adults

State Increases Rare Disease Coverage: SMA Treatment Extended to Young Adults.webp

Thiruvananthapuram, February 28 The Kerala Health Department has extended free supply of Risdiplam to patients with Spinal Muscular Atrophy up to 25 years of age.

State Health Minister Veena George said on Saturday that the benefit, which was previously limited to patients up to 12 years of age, has been expanded to cover those up to 25 years under the state's initiative for rare disease care.

The decision has been taken as part of the comprehensive rare disease treatment program ‘CARE’, launched by the state government in 2024, according to a statement.

All patients diagnosed with SMA type 2 through genetic testing will be eligible under the expanded coverage, it said.

The minister said the move was taken after considering the long-standing demands raised by patients and their associations.

An amount of Rs 30 crore was allocated in the last state budget for this purpose.

With the expansion, it is expected that around 80 per cent of SMA patients identified in Kerala will receive the medicine free of cost, she said.

Treatments for rare diseases are highly expensive and require long-term support.

The CARE program was formulated to address these challenges, and it has been providing free treatment and continued assistance to several children, the minister said.

The latest decision is expected to improve the quality of life and enhance the self-reliance of young patients by bringing them within the treatment ambit, she added.

The distribution of the medicine will be based on genetic testing and the recommendations of an expert committee.

Reiterating the state's commitment that life-saving treatment should not be linked to financial capacity, the minister said that Kerala had become the first state in India in 2022 to ensure free treatment and supply of medicines for SMA patients.

Spinal Muscular Atrophy is a genetic neurodegenerative disorder characterised by the loss of motor neurons in the spinal cord, leading to progressive muscle weakness and atrophy, and, in severe, untreated cases, death in infants.
 
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care program drug therapy genetic testing healthcare policy india kerala health department medication assistance neuromuscular disorders patient support rare disease care risdiplam sma spinal muscular atrophy thiruvananthapuram veena george
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