Child suffering from serious illness got free injection of Rs 16 crore from America- A child from Nashik in Maharashtra has received a free injection of Rs 16 crore for a rare genetic disease from a company in America. According to news agency PTI, Shivraj Dawre’s parents said that their son is the first patient of Spinal Muscular Atrophy (SMA) from India to have received gene replacement therapy Jolgensma. PTI quoted Shivraj’s parents and told them that they got the injection free. According to doctors, this is the most effective medicine for SMA patients. It was told that after preliminary investigation, Shivraj was referred to Hinduja Hospital in Mumbai. Vishal Dawre told PTI that Dr Brajesh Udani, a neurologist at Hinduja Hospital, suggested that Jolgensma could save his son’s life. Vishal Dawre, who runs a photocopy shop in Nashik, said that it is impossible to arrange such a huge amount.
Vishal Dawre said that Dr Udani suggested that they can apply for the lottery to be brought by the US-based firm to conduct clinical trials. If luck favours, they will get the injection for free. Shivraj was selected by the company in the lucky draw on December 25, 2020, and got the injection on January 19, 2021, at Hinduja Hospital.
What is SMA 1 disease?
Dr. Raman Patil, who treated Shivraj, said- ‘SMA 1 is a genetic disease. One child out of 10,000 is affected by this disease. This slows down the movement of the baby and the muscles stop working. Later the child may also die.” In July, the Center had offered a special exemption from payment of customs duty and GST for a two-year-old girl from Tamil Nadu for importing medicine. The Union Finance Ministry had said in a statement that in exceptional circumstances and in the public interest, 55 ml of the drug Zolgensma has been exempted from import tax.
Earlier, the Hyderabad-based couple raised Rs 16 crore through crowd-funding to buy injections for their three-year-old son in three-and-a-half months. Last year, Novartis said it had received US regulator approval for Zolgensma. The Swiss pharmaceutical company said that Zolgensma is a one-time treatment for SMA. It is a disease that affects about 1 in 10,000. This can result in death or in 90% of cases requiring permanent ventilation by the age of two.
