Bengaluru doctors work across borders to obtain life-saving drug for teen with rare disorder
In an extraordinary display of medical commitment, Bengaluru doctors collaborated internationally to save 15-year-old Chinmayi K from a rare and life-threatening immune disorder, CHAPLE syndrome. Their efforts included securing a life-saving drug, Pozelimab, free of cost from a global pharmaceutical company.
Chinmayi, a Marathahalli resident, had suffered from severe diarrhoea, blood in the stool, and protein loss since infancy. Despite numerous treatments, his condition remained undiagnosed until genetic testing in 2021 confirmed CHAPLE syndrome, a disorder affecting fewer than 100 people worldwide.
Dr. Lavanya RP, a paediatric gastroenterologist at Rainbow Hospital, explained the initial misdiagnosis as Crohn's disease, leading to ineffective treatments. The breakthrough came when the medical team, led by Dr. Chandrika S Bhat, sought guidance from Dr. Ahmet Ozen in Turkey, an expert on CHAPLE syndrome.
Pozelimab, the only effective treatment for the disorder, is unavailable in India and costs approximately ₹1 crore for 24 vials. The team successfully persuaded the drug's manufacturer, Regeneron, to provide it free of charge under compassionate grounds after months of negotiations.
The results were transformative. "Within two months of starting Pozelimab, Chinmayi was symptom-free, off all medications, and experiencing no side effects," said Dr. Lavanya.
Chinmayi's father, Krishnamurthy, expressed gratitude for the medical team's efforts, noting the dramatic improvement in his son's quality of life. "He's now free from debilitating symptoms and no longer requires frequent hospital admissions," he said.
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US–Iran first round direct talks conclude in Islamabad: Report
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The first round of direct talks between the United States and Iran, held in Islamabad, has concluded, Al Jazeera reported citing sources close to the development.
According to the report, following the discussions, delegations from both sides agreed to exchange written documents, a move aimed at ensuring clarity and consensus on the understandings reached during the meeting.
Both the Iranian and US delegations arrived in Islamabad on Saturday, April 11, amid high security for the peace talks.
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