Agreement signed to expand rare genetic disease SMA treatment options in Bangladesh

The National Institute of Neuro Sciences and Hospital (NINS), Switzerland-based research institute Roche Bangladesh and Bangladeshi drug manufacturer Radiant Pharmaceuticals have signed a tripartite agreement to increase treatment opportunities for the rare disease Spinal muscular atrophy (SMA) in Bangladesh.

NINS Director Professor Dr Quazi Deen Mohammed, Roche Bangladesh Country Manager Mark Heeb and Radiant Pharmaceuticals Chairman Md Nasser Shahriar Zahedi signed the agreement on behalf of their respective sides in Dhaka on Tuesday (14 November).

So far, 160 patients have been reported to be affected by SMA in Bangladesh. This rare genetic disease affects the central nervous system, peripheral nervous system, and voluntary muscle movement (skeletal muscle). Most of the nerve cells that control muscles are located in the spinal cord, which accounts for the word spinal in the name of the disease. Until now, there was a little opportunity to treat this disease in the country.

Earlier, on 25 October 2022, Raihan, a 22-month-old toddler from Manikganj, received Tk22 crore worth gene therapy for the disease at the National Institute of Neurosciences and Hospital free of cost. He was administered the therapy injection, the first in the country to treat the disease.

According to the agreement, the three institutions will help doctors improve their skills and treatment by sharing information.

Speaking on the occasion, Dr Kazi Deen Mohammad said, "Today is a historic day for Bangladesh in neuroscience. It is a great pleasure for us that this treatment will now be available in Bangladesh. However, this treatment is very expensive."

Thanking Roche Bangladesh and Radiant Pharma, Dr Kazi Deen Mohammad also said, "Nasser Shahriar took the initiative to talk to me about this. My request is to consider the cost of medicines for patients in Bangladesh."

Nasser Shahriar Zahedi said, "Roche is not only a pharmaceutical company but also an international research institute with a global reputation. The drugs for SMA are expensive. But to make it accessible, the government's cooperation is needed."

Swiss Ambassador to Bangladesh Reto Renggli was present as the special guest on the occasion. Adriano Treve, area head of Turkey, Russia, Iran, Central Eastern Europe, Central Asia & Indian Subcontinent areas for Roche Institute, was also present.