By: Moja Dolenjska
In Slovenia, fundraising is still underway for little Lora from Uršna Sela, who suffers from the extremely rare GAND syndrome. Her parents are striving to raise one million euros for the development of a therapy that would allow the girl to live a fuller life. Meanwhile, in Ribnica, a charity event was held over the weekend to raise funds for Jaka Škof. Jaka is an eight-year-old boy battling Duchenne muscular dystrophy (DMD) and needs 3.2 million euros for gene therapy that could save his life.
Ribnica MP Jože Tanko has been warning the government for some time about the need to ensure treatment for children with rare diseases and to end the reliance on charitable donations. He highlights the problem and insists that such treatment should be covered by the Health Insurance Institute of Slovenia (ZZZS).
In response to a question he submitted in December of last year, the Ministry of Health gave an answer that can be described as mocking and insulting to all citizens. They claimed that children with rare diseases are “very well cared for” in Slovenia. Tanko persisted and, at the beginning of May, submitted a formal question to the government. However, despite the 30-day legal deadline, no response has yet been provided.
In his parliamentary question, Tanko stated that in recent years, Slovenians are increasingly confronted with heartbreaking stories of parents of children with rare diseases who are forced to raise funds publicly to pay for their children’s treatment. In doing so, they are often compelled to disclose highly sensitive medical information, share deeply personal family stories, and expose their private suffering to the public – all just so their child might have a chance at life. He emphasised that this represents a total failure of the state and the healthcare system, which should prioritise caring for the most vulnerable members of society.
“Raising money for treatment through media campaigns and online platforms, where success depends on the appeal of the story and public visibility, is a profoundly unequal and degrading method,” he added, “causing additional psychological and social distress for families already in extremely difficult situations.”
It is becoming increasingly evident that Slovenia’s systemic approach to rare diseases is ineffective. There is a lack of transparency in the procedures for obtaining coverage for treatment abroad, lengthy decision times from ZZZS, and unclear responsibilities among institutions.
Tanko addressed the government with several direct questions, including:
- Does the government believe the current practice, where parents of children with rare diseases must publicly raise funds for treatment, is appropriate and consistent with the principle of human dignity as defined by the Constitution of the Republic of Slovenia?
- How many times in the past five years has a proposal to fund treatment abroad for children with rare diseases been rejected? What percentage of applications were approved?
- What specific measures has the Government of the Republic of Slovenia already taken, or plans to take, to address the issue of systemic support for the treatment of children with rare diseases?
- How does the government intend to protect the privacy of children and their families, who are forced to disclose personal medical information in the process of fundraising?
Despite the statutory obligation to respond within 30 days, the government has still not answered.
Already back in December, Tanko addressed a similar question to Health Minister Valentina Prevolnik Rupel, asking about free treatment for children with rare diseases. The response he received claimed that patients with rare diseases are “very well cared for in Slovenia, as they receive practically all available forms of treatment, all covered by health insurance.” The ZZZS, they added, is “currently still capable of financing the latest innovative medicines and treatments, including those for rare diseases.” They also noted that the development of new treatments falls under research activities, which are within the jurisdiction of the Ministry of Higher Education, Science, and Innovation.