Mumbai, February 2, 2021: Five-month-old Teera Kamat, who is suffering from a rare disease called Spinal Muscular Atrophy (SMA) Type 1, has been discharged from the hospital after 18 days.
The doctors have informed that Teera will have to be on a portable ventilator at home and will be given food through a pipe.
Teera’s mother Priyanka Kamat has been given proper training on how to take care of the child and what measures and precautions to be mindful of.
Five-month-old Teera was diagnosed with SMA type 1 which makes it difficult for her to breathe. SMA is a leading genetic cause of death among infants across the world. It attacks the nerves and muscles of the child and affects one in every 10,000 infants. A child suffering from the disease can have difficulty in basic activities like breathing, lifting their head, swallowing milk, and sitting up.
The cost for the injections required for Teera’s treatment is Rs 16 crore. Her parents – Priyanka and Mihir Kamat – took to crowdfunding to cover the cost of the Zolgensma therapy for their child.
The couple has been collecting funds for the last few months, however, now they are facing another big problem. Importing the drugs required for the therapy from the United States (US) to India is putting an additional burden of Rs 2 to 5 crore.
“Even after raising the money through crowdfunding or securing loans, we still have the looming spectre of 23pc import duties and 12pc GST, which adds 35pc to the total amount which is already so huge. Add to that the ridiculous amount of paperwork and formalities that have to be filed to import a drug to India. It takes over a month to complete these processes, while the child withers away and dies waiting on the drug to reach them. Can duties and taxes be waived on these life-saving drugs so that some burden may be eased?” the couple asked Prime Minister Narendra Modi in a letter on social media.
The couple has requested tax exemption for importing the drugs that are needed to save their daughter’s life. They have also urged the PM to make the approval process for lifesaving treatments easier.
“If pharma companies find it cumbersome to set up shop in India, they will never come here. Can we allow ease of doing business in the pharma sector for life-saving drugs?” the letter read.
In the next 2-3 days, Teera’s parents will hand over all the required documents for tax exemption to the Maharashtra government’s Health Department.
The imported medicines are expected to reach Teera immediately, for which her parents have started communicating with a pharma company through doctors.
Teera had been in a critical condition for the last 15 days and had problems in her lungs. Hence, the doctors decided to put her on a ventilator.
She is currently undergoing treatment at the SRCC Children’s Hospital near Haji Ali in Mumbai and was placed in the intensive care unit. Teera’s parents have been staying at the hospital for the last 15 days.
Teera’s story went viral and several news sites reported it, prompting netizens to help the family. Priyanka and Mihir live in Andheri and gave birth to daughter Teera on August 14, 2020. She was diagnosed with Spinal Muscular Atrophy (SMA) type 1 on October 24, 2020.