RAWALPINDI: Strive Trust in collaboration with Rawalpindi Chamber of Commerce and Industry (RCCI) will sponsor first-ever treatment of Spinal Muscular Atrophy (SMA) patient in Pakistan through a life-saving drug called EvrysdI am.
They organized an event on Tuesday to create awareness about the disease and its treatment options. There is lack of information about this fatal disease even among the healthcare professionals.
Speakers informed the audience about the consequences of not providing the drug to the patients at the right time since the most severe type which is known as type 1 is very lethal. Most patients die within 6-9 months if not treated. Thanks to new research in the medical science, the disease is not only treatable but curable as well now.
Strive Trust is the pioneer organization working on Spinal Muscular Atrophy (SMA) in Pakistan and has organized several events to create awareness about SMA.
Due to the tireless efforts of Strive Trust, the dream of treatment became a reality for the SMA community in Pakistan.
On this occasion, Speksperson Of Strive Trust Dr. Nisar gave a presentation about the results and efficacy of game changer SMA drug “evrysdi” (Risdiplam). According to FDA clinical trial results, the efficacy of this medicine is very high and this is a life-saving drug for SMA patients.
Though the medicine is very expensive and costs of the medicine is in millions of rupees, however Roche pharma that developed this drug has offered a massive discount of 70-80 percent for Pakistan. Currently drug’s per year course is available in Rs. 2,000,000 to 2,500,000 in Pakistan.
Treatment of neuro-muscular disorder SMA, not affordable for patients in Pakistan
Dr Jamal Nasir, CEO of City Lab and renowned social worker expressed pleasure on provision of such life-saving drug and also ensured his complete support for diagnostic procedures required for the patients of SMA and other genetic disorders.
President of RCCI, Chaudry Nadeem A. Rauf ensured his complete support and said that RCCI will help Strive Trust in awareness and availability of SMA Drug in Pakistan. RCCI will also approach government sector for provision of this life saving drug to every patient in Pakistan.
Mazhar Ul Haq Loan who is also member of RCCI and a donor of medicine to an infant suffering from SMA stated that he will not only continue to support but will also contact other donors for patients who are still waiting for the drug availability and treatment due to financial difficulties.
Tayyab, the father of 2 months old Mahad, an infant suffering a form type 1 SMA, said when he was told that his son has SMA, he and and his wife were completely broken. But they did not give up and luckily they were able to contact Strive Trust. The child is getting free medicine through Strive and RCCI sponsorship.
CEO Strive Trust, Yasir khan, who himself is suffering from the disease, emphasized the importance of awareness about the disease and its treatments available recently. He also shed light on some recent developments in the treatment of this devastating disease.
SMA, a neuro-muscular disorder leading towards everlasting disability
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