Most expensive drug in the world: Egypt collects two million euros for a sick child

Almost two years old, Rukaja suffers from genetic muscle atrophy. The most expensive drug in the world is needed for the therapy. The money is raised during a major fundraising campaign in Egypt. But time is pressing: in a few weeks the girl will be too old for therapy.

According to media reports, a fundraiser for a sick girl in Egypt raised the equivalent of around two million euros. The almost two-year-old Rukaja suffers from spinal muscular atrophy (muscle wasting), in which special nerve cells in the spinal cord perish. Now a gene therapy agent called Zolgensma is supposed to help her – at a cost of more than two million dollars, it is currently the most expensive drug in the world. The girl’s uncle was overjoyed in an interview with the private television station TEN and said that treatment could begin now.

The therapy is administered once intravenously. However, time is of the essence, as children must be given the drug at a young age. In just a few weeks the girl will be two years old. In the USA, however, its use is only permitted in children under the age of two. In Europe, Zolgensma received provisional EU approval in May 2020 and can be given to infants and children weighing less than 21 kilograms.

Numerous celebrities have taken part in the campaign in Egypt over the past three weeks, and a hashtag has been used to call for donations on social media. Finally, the required 40 million Egyptian pounds came together, the equivalent of about two million euros. A video was posted on social media showing the girl’s neighbors in the coastal city of Alexandria rejoicing at the fundraiser’s success. “It was a difficult dream, but it came true,” the newspaper Al Watan quoted Rukaja’s father as saying.

The Egyptian Ministry of Social Solidarity helped with the campaign. “The ministry ensures that the money raised is used for the intended purpose,” a senior ministry official told private TV broadcaster Saada al Balad. Excess money is to be used to treat similar cases.

(This article was first published on Sunday, June 26, 2022.)