Baby with rare disease needs Rs. 16 crore drug. Shashi Tharoor, Samantha Ruth Prabhu, Manju Warrier join fundraiser

10-month-old Diya Nandagopal was diagnosed with spinal muscular atrophy in October.

Ten-month-old Diya Nandagopal’s best hope for cure from spinal muscular atrophy, a rare and potentially fatal genetic disease, is a drug that costs a whopping Rs. 16 crore. The baby from Bengaluru was diagnosed with the disease last month and her parents are raising funds to get her the drug.

Doctors have said Diya needs Zolgensma, a Rs. 16 crore medicine sold by American-Swiss pharma giant Novartis, which treats spinal muscular atrophy. The drug is administered as an injection.

“She needs to receive this treatment before she turns 2. This is way out of our reach,” her parents wrote in separate Facebook posts, seeking to raise funds.

Congress MP Shashi Tharoor, Telugu actor Samantha Ruth Prabhu, Malayalam actors Manju Warrier, Parvathy Thiruvothu, Rima Kallingal, Tovino Thomas are among prominent voices on social media who have shared the parents’ appeal for help.

“This powerful appeal melted my heart: The lovely baby @everyone4diya deserves a chance at a normal life. If only @Novartis or @NovartisFDN could cut prices for such unfortunate families!” Tharoor tweeted on Wednesday.

This powerful appeal melted my heart: https://t.co/0jMSLZLkZW
The lovely baby @everyone4diya deserves a chance at a normal life. If only @Novartis or @NovartisFDN could cut prices for such unfortunate families!

Related Stories

• Novartis agrees to buy Avidity in $12-billion biotech deal
• India revokes patent of Novartis' cardiac drug Vymada: Report
• First malaria drug for babies approved; set for rollout in Africa within weeks

— Shashi Tharoor (@ShashiTharoor) November 18, 2021

Though Diya’s parents have registered her for Novartis’s compassionate access program that gives the drug free of cost of a limited number of patients, the chances could be slim as beneficiaries are selected globally through a lottery system. Novartis allocated 100 doses free-of-charge in 2020. In 2021, the drugmaker is planning to make 100 doses free of cost.

Spinal muscular atrophy is an genetic disorder due to a faulty gene that weakens a child’s muscles and affects their ability to swallow or breathe, killing most afflicted by it within a couple of years.

The treatment is a one-time infusion gene therapy that takes about an hour.

Diya’s family raised over 2.48 crore in the first four days of the fundraising campaign through an online platform. Over 4,000 people have contributed to the treatment fund through the platform so far.

Click here to help Diya Nandagopal: https://www.impactguru.com/fundraiser/help-diya-nandagopal