The Rare Disease India Foundation has requested funds
Rare Disease India Foundation – Every year, the parents of nine-year-old Sairaj Barse, who has Mucopolysaccharidosis type I (MPS I), a rare genetic illness that affects both physical and mental development and can lead to organ damage, require a total of Rs 51 lakh for his treatment. On February 25, his father Krishna, a Maharashtra State Road Transport Corporation (MSRTC) bus conductor, went to Mumbai’s largest civic-run KEM hospital, which houses the centre for rare diseases, in the hopes of registering his son on the government of India’s crowdfunding portal for rare disease patients, which was launched in August 2021.
Krishna returned home empty-handed because registering on the platform necessitates further investigations, which cost between 60,000 and 70,000 dollars. There are now 237 people with rare diseases who are unable to obtain funds through the portal set up to cover their treatment costs.
The portal (nhp.gov.in) has only received a total gift of Rs. 11.58 lakh in the seven months it has been up and running.
The Rare Disease India Foundation (RDIF) sent a letter to the Union Health Minister last Thursday, requesting quick attention to the difficulty in receiving treatment. RDIF has proposed a national programme on rare diseases with a budget of at least Rs 150 crore as one of the few ideas.
“There is a significant gap in giving life-saving treatment to people with uncommon genetic diseases.” “Several patients, especially children, have died in the interim period due to a lack of government assistance for treatment,” said Saurabh Singh, director of the RDIF.
“The lack of prompt financing help for qualified patients with treatable diseases could lead to the death of many more.”
Rare Disease India Foundation asks for funds
The funds received via the site, according to Manjit Singh, president of the Lysosomal Storage Disorders Support Society (LSDSS), are insufficient to treat even one patient. “On average, a patient with a rare condition needs drugs worth 7-8 lakhs. “So far, the portal hasn’t shown to be beneficial or useful,” he remarked.
According to patient advocacy groups, there are currently 34 identified rare disease patients in Maharashtra, and identical struggles to those faced by the Barse family can be found in every household.
Krishna claimed that Sairaj is a bright child in order to gain the attention of the authorities. “If he takes the necessary medicines, which I cannot pay, he can live a normal life.” His condition has deteriorated, and I am unable to intervene. We were able to give him treatment for four months each in 2018 and 2019 since he was diagnosed,” Krishna added.
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