Update: As of noon Monday 30 September, the campaign had raised €3.4 million
STA, 30 September 2019 - A major charity campaign underway in Slovenia for the past week saw individuals, charities, institutions, clubs, and associations collect some EUR 2.3 million for the treatment of a 19-month-old boy with spinal muscular atrophy.
The parents of the 19-month Kris started the campaign last Monday after learning that their son could receive a potentially life-saving dose of treatment, which, however, is not available in the EU yet.
The drug could be administered only in the US but at the price of EUR 2.3 million.
The boy would need a single dosage of the Zolgensma gene therapy but would need to receive it before he turns two to be effective, meaning in the next four months, the parents said in their message to the public.
The public reacted immediately and collected EUR 1.5 million in a matter of days, as the story of Kris went viral in Slovenia.
Several top athletes and musicians joined the campaign, including basketball star Luka Dončič, the national volleyball team and even Italian motorcyclist Valentino Rossi. Several fund-raising events and concerts have also been organised.
The campaign, in which medical experts too spoke in favour of the Zolgensma treatment, however, raised the question of why the treatment could not be covered by the health insurance.
The ZZZS health fund responded that the boy was already receiving Spinraza, a Food and Drug Administration-approved treatment, while the Zolgensma treatment has not been approved by the European Medicines Agency (EMA) yet.
The price of annual treatment with Spinraza in the first year tops EUR 400,000 and the medicine is currently available in Europe only to children from the wealthiest countries, the ZZZS said.
EMA is expected to greenlight the Zolgensma treatment at the beginning of next year.
Meanwhile, the opposition Democrats (SDS) have requested that an emergency session of the parliamentary Health Committee be called to discuss issues relating the treatment of rare diseases. The party wants to see a rare disease register set up and talk about treatment funding.
