15-month-old Karnataka boy fighting SMA requires Zolgensma, which costs ₹17.5 crore; CM Siddaramaiah seeks PM Modi's assistance.
Published Nov 02, 2023 | 8:49 AM ⚊ Updated Nov 02, 2023 | 11:26 AM
15-month-old Karnataka toddler Maurya needs this drug.
With a heartfelt appeal, Karnataka Chief Minister Siddaramaiah, has reached out for help to Prime Minister Narendra Modi, shedding light on the dire circumstances of a 15-month-old boy from Karnataka who is grappling with a rare and debilitating disease.
The boy, Maurya, who is battling Spinal Muscular Atrophy (SMA), needs a critically important drug named Zolgensma.
This injection, believed by doctors to be a potential cure, is, however, not easily attainable due to its staggering cost. With the price tag set at a daunting ₹17.5 crore, the drug’s accessibility remains a significant challenge for the afflicted child’s family.
Highlighting the financial strain, Siddaramaiah on Wednesday, 1 November, took to X (formerly Twitter) and put up a post in Kannada along with a request letter.
The post loosely translated to: “Prime Minister Narendra Modi, a 15-month-old boy named Maurya from Karnataka is suffering from a rare disease called ‘spinal muscular atrophy’. Zolgensma, an injection that can cure this child’s disease, has to be imported from abroad and costs ₹17.5 crore. I am requesting that the Union government should consider this as a special case on humanitarian grounds and help save the life of the little village of Karunad by exempting it from import duty.”
He urgent collective action and support.
ಪ್ರಧಾನಿ @narendramodi ಅವರೇ,
ಕರ್ನಾಟಕದ 15 ತಿಂಗಳ ಮೌರ್ಯ ಎಂಬ ಪುಟ್ಟ ಕಂದ ‘ಸ್ಪೈನಲ್ ಮಸ್ಕ್ಯುಲರ್ ಅಟ್ರೋಪಿ’ ಎಂಬ ಅಪರೂಪದ ಕಾಯಿಲೆಯಿಂದ ಬಳಲುತ್ತಿದ್ದಾನೆ. ಈ ಮಗುವಿನ ಖಾಯಿಲೆಯನ್ನು ಗುಣಪಡಿಸಬಹುದಾದ ಝೋಲ್ಗೆನ್ಸ್ಮ ಎಂಬ ಚುಚ್ಚುಮದ್ದನ್ನು ವಿದೇಶದಿಂದ ಆಮದು ಮಾಡಿಕೊಳ್ಳಬೇಕಾಗಿದ್ದು, ಅದರ ಬೆಲೆ ರೂ. 17.5 ಕೋಟಿ ಇದೆ. ಕೇಂದ್ರ ಸರ್ಕಾರವು… pic.twitter.com/1mW5o1Dw99— CM of Karnataka (@CMofKarnataka) November 1, 2023
The sheer cost of Zolgensma is daunting enough, but the situation is further complicated by the substantial import duties imposed on it. This additional financial weight makes procuring this essential, potentially life-saving drug almost an insurmountable task for the child’s family.
As per US National Institute of Neurological Disorders and Stroke, SMA refers to a group of hereditary diseases affecting the motor nerve cells in the brain and spinal cord, leading to muscle weakening and wasting.
Motor neurons, when they get affected, impact the movement in the arms, legs, face, chest, throat, and tongue, as well as skeletal muscle activity, such as speaking, walking, swallowing, and breathing.
The severity and progression rate can vary, but in its most severe form, it can result in paralysis or even death in infancy or early childhood. Early diagnosis and intervention are crucial for managing the symptoms and improving the quality of life.
The most common form of SMA is caused by a mutated or missing gene known as the survival motor neuron gene 1 (SMN1), which is typically responsible for the production of a protein essential to motor neurons.
According to genetic counsellor Deepa Bhat from JSS Medical College in Mysuru, the high cost of SMA drugs, especially medications like Zolgensma, is influenced by several interconnected factors.
The research and development process for a drug like Zolgensma is lengthy, complex, and fraught with challenges, often spanning decades with high associated costs.
“Producing gene therapies demands intricate and exacting manufacturing procedures, further driving up expenses. Additionally, because SMA is a rare condition, the patient population is limited, prompting companies to set higher prices to recoup their significant investments. The pricing often reflects the long-term value and benefits these treatments offer, with few drugs like Zolgensma providing potentially lifelong improvements from a single dose,” she explained.
Prasanna Shirol, Co-Founder and Director of the Organisation for Rare Diseases India, told South First that the National Policy for Rare Diseases (NPRD) Act of 2021 has a one-time support of ₹50L allotted for rare diseases under Group 3.
“However, as Siddaramaiah pointed out, this amount does not suffice for many rare diseases, including SMA,” Shirol said.
“Every Life is important and should not be lost due to lack of funds in a civilised society, especially when treatment options are available. Right time to act, save children from deadly SMA,” he added.
He also noted that SMA is not as rare as one might think. Current estimates suggest that 1 in 6,400 to 1 in 10,500 children suffer from SMA.
“This implies that between 10,000 to 14,000 children could be grappling with this debilitating condition in India alone,” he said.
With advancements in medical science, cures and treatments for several rare diseases are now within reach. However, their exorbitant costs make them inaccessible for a majority, posing ethical and economic dilemmas.
In his communication to the prime minister, Siddaramaiah articulated two primary requests.
First, he urged the Modi to instruct the Ministry of Finance to provide an exemption on the import duties associated with Zolgensma. Such a move would significantly reduce the drug’s overall cost, making it more accessible.
Second, Siddaramaiah proposed that the prime minister consider sanctioning funds from the PM CARES Fund, which would assist in securing the much-needed injection for the child.
The plea underlines the challenges many face when it comes to accessing treatments for rare diseases, and highlights the need for systemic support from the government to ensure that every citizen has a fighting chance against such conditions.
