This is not for the first time that an Indian child has been in urgent need of a lifesaving drug that costs Rs16 crore per dose and has to be imported from the US. Often against the price tag of the drug, the impossible task of raising the impossible amount takes over. The issue of hefty taxes that the drug has always been subject to, remains buried in the background.

The Union Government recently waived the GST and import duty to import Zolgensma, labelled as the most expensive drug in the world, for baby Mithraa.

Mithraa was diagnosed with Spinal Muscular Atrophy on June 4 and since the drug has to be administered to a child under two-years of age, her parents had until July 5 to raise the money, get the waiver and administer the dose.

Baby Mithraa

After the parents somehow managed the Herculean task of raising Rs 16 crore, the GST of 5 per cent stood in the way, for which they needed a waiver. Even though the customs duty for life-saving drug has been waived, but ample amount of paperwork goes behind the waiver.

On Wednesday, finally, after amplified requests on social media, including requests from Tamil Nadu Chief Minister MK Stalin and Coimbatore MLA Vanathi Srinivasan, Union Finance Minister Nirmala Sitharaman waived the import duty and GST under exceptional circumstances and in the public interest.

Why the waiver needs to be permanent?

Local BJP MLAs and party workers and several others have viewed the development as job done, but that's not nearly enough. Many of those with NGOs associated with crowdfunding say that the waiver on customs duty, GST not just needs to be made permanent but further the drug needs to be heavily subsidized.

Starting with the price itself that hardly anyone can afford, of the handful of cases reported in the country each year. Urging on the need for subsidy against the number of cases reported, Chief Minister MK Stalin wrote in the letter addressed to Finance Minister Sitharaman, "Drugs for this gene-therapy are being imported by the hospitals for treatment in Tamil Nadu and annually 90-100 such cases are being reported. As these drugs are imported, the customs duty and integrated GST levied on them, increase the cost of gene therapy."

MK Stalin

MLA Srinavasan, wrote to PM Modi and requested the same. She also mentioned how the parents of Mithraa, Sathish and Priyadharshini had resorted to crowdfunding to save their daughter's life and hence if the government could chip in by waiving the import duty and GST on the lifesaving medicine. The total GST, taxes and import duty amount to 35 percent of the cost of the medicine.

Dr SK Singla, neonatologist, Chandigarh Hospital, says there have been quite a few cases and there has definitely been a surge of similar cases on crowdfunding platforms. "The finance ministry gives a waiver on case-by-case basis, which is not nearly enough. The drug needs to be subsidised and there needs to be blanket exemption from duties. Because then that's one burden less for the parents on a timer and fighting for their child's life."

The Rs 16 crore drug

At a reported price of $2.125 million per dose, Zolgensma is by far the most expensive drug in the world. Zolgensma (onasemnogene abeparvovec) is currently a part of drugmaker Novartis' portfolio. Originally biotechnology company Avexis (which develops treatments for rare neurological genetic disorders) had developed the drug. It is the first gene replacement therapy for the treatment of spinal muscular atrophy in pediatric patients.

The logo of Swiss pharmaceutical company Novartis is seen on its headquarters building in Basel, Switzerland. REUTERS/Arnd Wiegmann/File Photo

The drugmaker Novartis Gene Therapy has revealed that in studies, Zolgensma has helped babies reach milestones such as breathe without the help of a ventilator, sit up, crawl and even walk after a single infusion treatment.

Earlier this year, it was also approved by the NHS (National Health Service) England to treat pediatric patients, less than 2 years of age who suffer from the rare genetic disease of Spinal Muscular Atrophy (SMA).

What is the drug required for?

A rare genetic disease, Spinal Muscular Atrophy (SMA) is caused by a genetic defect in the survival motor neuron (SMN) gene. It causes motor neurons loss and thereby deteriorates the neuromuscular functioning of the body. It results in muscle weakness, paralysis, progressive loss of movement and is often fatal.

DNA, RNA, Genetic code, Base pairs, genome, cells

Why it needs to be made cheaper?

Although the drug is required by a rare few, with the disease SMA being one of the rarest with an estimated one in 10,000 babies born with it, it needs to be given at the earliest to a child, there is an urgent need to waive off duties and highly subsidize the drug.

Before Baby Mithraa

This year itself, before baby Mithraa, two-year-old Ayansh Gupta was in urgent need of Zolgensma to treat his condition of SMA. With a nationwide campaign, amplified requests on social media and several NGOs taking up his cause, 65000 people came together to raise Rs 16 crore. In Ayansh's case too, the government exempted taxes, but after paperwork and submissions.