After Baby Mithrra, Another TN Toddler Needs Rs 16-Cr Life-Saving SMA Drug, And Sponsors

Baby Bharathi’s parents say they need help to raise at least Rs 22 cr — Rs 16 cr for the one-dose Zolgnesma injection and another Rs 6 crore to pay customs duty, GST, other taxes

Baby Bharathi with her parents

Chennai: Just a month ago, a two-year-old Tamil Nadu girl, KS Mithrra, who was born with a rare genetic disorder, received a big help from all quarters, including the state and central governments, so she could receive a drug that could save her life but needed around Rs 22 crore in all to be imported into the country.

The Narendra Modi government waived the customs duty and integrated GST on the special injection after Tamil Nadu Chief Minister MK Stalin made a request to this effect to Union Finance Minister Nirmala Sitharaman.

Baby Mithraa was administered the one-time shot a couple of weeks ago. 

The two-year-old, however, is not the only child in Tamil Nadu with such a condition. Bharathi, another toddler, has now been diagnosed with Spinal Muscular Atrophy (SMA), the same genetic disease, and her parents are desperately looking for help to raise money for the very costly treatment.

According to doctors, children affected by this disease should ideally undergo gene therapy before they turn two. Bharathi is 21 months old.   

The drug used in the treatment is Zolgnesma, manufactured by Swiss company Novartis.

‘Only Rs 60 Lakh’ Raised So Far

Until two months ago, R Jagadeesan and his wife J Ezhilarasi, residents of Thanjavur in Tamil Nadu, had no idea their daughter JE Bharathi had a life-threatening condition. It was only after they noticed that the one-and-a-half-year-old was not able to stand or walk, unlike other children of her age, that they started to seek medical attention for her.

Speaking to ABP Live, Jagadeesan said most doctors initially dismissed their concern as “gross motor delay”. But as they started to notice how the child’s physical activities were reducing, the couple immediately consulted doctors at the Christian Medical College (CMC) in Vellore. 

The doctors, after conducting multiple tests, confirmed it to be SMA-type 2. ABP Live has seen the child's medical documents. 

“It was only on August 9 that doctors at CMC had confirmed that my daughter is suffering from SMA-type 2. Immediately, we shifted our daughter to Bangalore Baptist Hospital in Bengaluru where similar cases are treated. The doctors had informed us that we need to do gene therapy before my daughter turns two. At present, she is 21-months-old and she will turn two on November 2,” said Jagadeesan. 

He needs to spend at least 22 crore — Rs 16 crore for the Zolgnesma injection and another Rs 6 crore on customs duty, GST and other taxes.

Explaining that both he and his wife are salaried people and could not afford to procure the drug, Jagadeesan said they have decided to seek assistance from the government and NGOs to raise funds. 

“We have sought help from friends and relatives through social media platforms. From our savings, and through crowdfunding, we have managed to raise only Rs 60 lakh as of now. Only if we could collect the remaining amount before one month can we start the treatment as procuring the drug and clearing customs procedures are time consuming,” he added.

When contacted, Dr S Ezhilarasi, director of the Institute of Child Health, which functions under the Directorate of Public Health Service, Tamil Nadu, said the case has not been brought to her knowledge. Asked if the government would intervene in Bharathi's case like it did for Mithrra, she said she could not comment on this right now.   

What Is SMA And What Do Doctors Say About Its Treatment?  

Confirming that Bharathi has been diagnosed with SMA-type 2, Dr Ann Agnes Mathew, paediatric neurologist who is treating the child at Bangalore Baptist Hospital, said the genetic disease makes children weak and it’s “life-threatening”.

“As she grows older, her muscles would become weak and she would not be able to move her hands and legs. She will face difficulties in moving, breathing, swallowing and even crying,” she said in a recorded video. 

Pointing out that medical science until some time ago did not have any cure for the disease, Mathew said the disease can now be treated in children aged below two years, but the injection is “very expensive”. 

Zolgnesma, manufactured by Novartis, is a single-dose injection and is among the most expensive treatments in the world. It costs $2.1 million or Rs 16 crore, excluding GST and import duties. 

The Government of India has recently created a digital platform for individual, corporate and other donors to facilitate voluntary donations for the treatment of patients with rare diseases, including SMA, as it said it is difficult for the government to fully finance such treatments in view of the “high cost, resource constraints and competing health priorities”. 

SMA affects approximately one child in 10,000 live births globally, and in India, the severe and progressive neuromuscular disease affects one in 7,744 live births, according V Simpson Emmanuel, CEO and Managing Director of Roche Pharma India, who said this in an interview to Financial Express Online. 

The Case Of KS Mithrra

In June, 23-month-old KS Mithrra from Komarapalayam in Tamil Nadu was diagnosed with SMA type-1. Her father K Satheesh Kumar could not afford the costly treatment but managed to raise the required amount of Rs 16 crore through an online crowdfunding campaign. 

He, however, still needed another Rs 6 crore to pay the customs duty and other taxes. Learning about his plight highlighted in the media, CM Stalin then wrote to the Centre seeking an exemption, which was granted soon.

Mithrra was administered the life-saving drug a few weeks ago.

While the treatment is prescribed only for children below two years as of now, Novartis is working on expanding it to older patients. 

Earlier this month, the Swiss company said it will study the use of the drug for patients aged between two and 18 years, according to media reports.