A petition started by desperate parents to import life-saving medicine for their daughter with a rare genetic disorder, spinal muscular atrophy, finds success.
Coimbatore based Satheesh Kumar and his wife V Priyadrshini started the petition on change.org as a plea to the government to waive the 6 Crore import tax (GST and custom duty) on the medication, Zolgensma, required for their daughter's condition.
2-year-old Mithra has a rare genetic disorder called Spinal Muscular Atrophy.
On 14 July, Mithra's parents announced that they had successfully collected 16 Crores–the funds needed for the one-time lifesaving drug through crowdfunding.
However, the family then came upon another roadblock. The Drug, Zolgensma, is not manufactured in India and needs to be imported from Switzerland.
To draw the attention of the authorities and request a waiver of the steep tax, Care & Welfare foundation, on behalf of Satheesh Kumar and his wife V Priyadrshini, started a change.org petition.
The petition, signed by over 90,000 people managed to catch the attention of MP Dr S. Senthil Kumar, Member of Parliament for Dharmapuri constituency in Tamil Nadu who further wrote to the Union Finance Minister Nirmala Sitharaman, requesting for waiver of the tax amount.
Spinal Muscular Atrophy or SMA is a rare genetic degenerative disorder that leads to the deterioration of muscles
WebMD explains that the condition leads to a “breakdown of the nerve cells in the brain and spinal cord,” keeping them from sending the necessary signals for muscle movement.
As the condition progresses, the child can end up having trouble with movement, and in severe cases even swallowing and breathing.
In the most common types of SMA, like the one that Mithra has, the cause is the deletion of one gene, that is one of two SMN1 genes on chromosome 5.
There is no cure for SMA, but there are a few treatment options that can help, including the medicine Zolegensma.
Zolegensma is a one time gene replacement therapy medication that has shown promise in 'curing' SMA. The medication delivers a copy of the SM1 gene which helps activate the nerves that give the signal for muscle growth and movement.
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Published: 15 Jul 2021,05:23 PM IST