Amaravati: Minister Nara Lokesh has announced ‘Project Punarvika’, a new initiative aimed at supporting children suffering from rare diseases, following the emotional case of 11-month-old Punarvika.
Rs 16 crore life-saving injection
Lokesh said he was deeply moved while witnessing the administration of a life-saving injection worth Rs 16 crore to the infant, describing it as one of the most emotional moments of his life.
The case, he noted, evolved beyond a medical emergency into a nationwide humanitarian cause, with people from across the country extending support through prayers and financial contributions.
In a statement, Lokesh said that the high cost of treatment prompted him to study the issue in depth, including the manufacturing, import process and pricing of such drugs. During this process, he interacted with several experts, including Dr Ramesh Konaki, whose expertise in rare diseases he appreciated.
Thousands of kids suffer from rare genetic disorders
Highlighting the broader concern, Lokesh pointed out that thousands of children in India suffer from rare genetic conditions, many of which have treatments that are often unaffordable for most families.
He acknowledged that while Punarvika was fortunate to receive timely help, many others remain without access to such life-saving therapies.
What is Project Punarvika?
Under ‘Project Punarvika,’ the government plans to focus on multiple aspects, including engaging with the Central Government to strengthen policy support for rare diseases.
The project involves collaborating with global pharmaceutical companies to improve access and reduce treatment costs and working with Indian drug manufacturers and medical experts to explore domestic production and scalable solutions.
The initiative will also aim to create awareness and build a support ecosystem to assist families battling rare diseases, ensuring they do not face the struggle alone.
What was the medical case involving Spinal Muscular Atrophy?
It may be recalled that 11-month-old Jampala Mangala Punarvika from Veldurthi village in Kurnool district, diagnosed with Spinal Muscular Atrophy (SMA-1), has been administered a life-saving injection worth Rs 16 crore, an amount far beyond the reach of an ordinary family.
SMA type-1 is a rare and devastating genetic condition that weakens a child’s muscles and slowly takes away the ability to move, breathe and live normally.
Moved by the family’s plea, people from across Andhra Pradesh stepped forward to help. Contributions poured in from all sections of society, reflecting a shared determination to save the little girl’s life. Minister Nara Lokesh extended significant support by donating Rs 6 crore, while the remaining Rs 10 crore was raised through public donations.
Support also came from the Centre. Nandyal MP Dr Byreddy Shabari, a medical professional herself, appealed to the Union Ministry of Health and Family Welfare for assistance. Responding positively, the ministry agreed to provide financial aid of up to Rs 50 lakh under the National Policy for Rare Diseases (NPRD) 2021.
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