Lokesh Saves One Life Today, Aims to Save Thousands Tomorrow

The other day, Minister Nara Lokesh won everyone’s appreciation after helping a child with 6 Crore Rupees from his Personal Funds to procure the 16 Crore Rupees worth  Zolgensma, a life-saving gene therapy for children suffering from Spinal Muscular Atrophy (SMA) Type 1, a rare genetic disorder.

While the social media is in awe for the young minister’s proactive help, he did something more progressive.

Nara Lokesh announced ‘Project Punarvika’ – an initiative that will work on multiple fronts. With this initiative, Lokesh and his team in the Government will engage with the Central Government to strengthen policy support for rare diseases, will work with global industry players to streamline access and reduce costs of such therapies, and collaborating with Indian pharmaceutical companies and doctors to explore domestic manufacturing and scalable solutions

Project Punarvika will also build awareness and a support ecosystem so that no family has to fight this battle alone.

This is an excellent initiative by the young minister because even the Government can not go on helping individual cases pooling 16 Crore Rupees every time for an injection. Things like this need farsightedness to explore a long-term solution.

If Lokesh is able to crack something to bring down the prices of this injection by collaborating with the global pharma players or by ensuring domestic manufacturing, it will be lot of good for 1000s of children suffering with Spinal Muscular Atrophy.

There are numerous who helplessly give up on their children as they could not even dream of affording 16 Crore Rupees.

Lokesh impressed on both the fronts in this matter. He responded immediately for the child and then, he started looking for long-term solution. That is how a considerate politician should do.

Meanwhile, YSR Congress is struck in narrow-minded thinking organizing their social media teams to make allegations that Lokesh did not give his personal funds and only helped the baby from CMRF funds.

Zolgensma’s high cost is because of the massive R&D investments (including Novartis’s $8.7 billion acquisition of the developer), complex and costly manufacturing of viral vector-based gene therapy, and the need to recover expenses from a tiny patient population for this rare disease.

Also, as a “one-and-done” treatment, all development, production, and profit expectations are loaded into a single administration unlike lifelong therapies that spread costs over years.