Key Points
Fakir, who earns less than Rs 10,000 per month, says his sons treatment costs Rs 30 lakh per annum...
On March 30, the Centre decided to exempt from basic customs duty all drugs and foods for special medicinal purposes, imported for treatment of rare diseases listed under National Policy for Rare Diseases (NPRD), 2021..
In May 2022, it announced financial aid up to Rs 50 lakh for patients with rare diseases who are being treated in 11 Centres of Excellence (CoEs) across India..
As a father, it pains me to see my only child inch closer to death because I cannot afford the life-saving medicines she needs, he said.. Unlike Fakir, the hospital hasnt informed Yogesh about the Centres aid since KEM is not accepting applications for financial help from patients whose first-year treatment cost is above the capped amount..
He is given steroids to manage his condition but they have caused severe side-effects, Keyush said.. Poor parents often end up spending all their savings on tests, including some that cost upto Rs 1 lakh..
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