(MENAFN- Swissinfo) Families in Turkey have waited years for the government to approve Zolgensma, a $2.1 million (CHF1.9 million) gene therapy sold by Swiss pharma group Novartis, to treat a rare and potentially fatal genetic disease in infants. Many desperate parents have turned to crowdfunding to pay for the drug.
This content was published on April 26, 2024 - 09:00 10 minutes
Jessica covers the good, the bad, and the ugly when it comes to big global companies and their impact in Switzerland and abroad. She's always looking for a Swiss connection with her native San Francisco and will happily discuss why her hometown has produced some of the greatest innovations but can't seem to solve its housing crisis.
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Rüzgar has been fighting for his life since the day he was born. At one month old, he was diagnosed with the most severe form of spinal muscular atrophy (SMA), a rare genetic disease that causes progressive muscle loss. Without treatment, babies who show symptoms before the age of six months typically don't survive beyond their second birthday.
As soon as Rüzgar's parents were told he had the disease, they knew what they had to do – they launched a crowdfunding campaign to raise $2.1 million to pay for a gene therapy they believed would save his life: Zolgensma. Although dozens of other countries, including the United States, had already approved the one-time treatment, the Turkish health authorities were holding out, insisting that there was insufficient evidence of the drug's efficacy to justify its eye-popping price tag and include it on the list of approved medicines.
More More Whatever happened to the world's most expensive drug?
This content was published on Apr 23, 2024 Swiss pharma giant Novartis launched Zolgensma five years ago with a price tag of $2.1 million. What happened to it?
Read more: Whatever happened to the world's most expensive drug?
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