Endangered cells 2,500 children

Parents of children whose stem cells are stored in the failed Biobank have gathered outside the Ministry of Health in Ljubljana, demanding action over what they describe as a critical situation threatening the survival of their children's biological material. The protest was organized due to concerns that the director of GaiaCell, the company responsible for storing these samples, Gordana Kalan Živčec, is blocking access to the necessary liquid nitrogen supply required to maintain the cells. According to the parents, this blockage means that the cells will likely expire by Monday unless immediate intervention occurs.

The parents expressed frustration with the lack of response from relevant authorities, including the Public Agency for Medicines and Medical Devices of the Republic of Slovenia (JAZMP). They claim that JAZMP has issued a valid decision requiring GaiaCell to continue maintaining the cells but has not taken any concrete steps to enforce this order. Additionally, the parents stated that they had already transferred funds to both JAZMP and the bankruptcy administrator, as well as to Istrabenz, who were supposed to facilitate the delivery of the gas. However, according to the parents, neither JAZMP nor Istrabenz have acted on their requests.

Goran Kotnik, representing the parents, explained that the cost of refilling the liquid nitrogen tank is crucial for keeping the cells alive. He noted that the last refill took place last Friday and that without further refills, the cells would die within the next day. This urgency led the parents to organize the protest, hoping that the new Minister of Health, Tadej Ostrc, would take decisive action to ensure the continuation of cell preservation efforts.

The parents also criticized the previous administration for allegedly protecting corrupt officials, expressing hope that the new minister would address corruption issues and resolve one of the larger scandals in the Slovenian healthcare system. They emphasized that JAZMP had previously allowed Kalan Živčec to keep the cells in her company while attempting to extract higher fees than the actual costs. According to reports, Kalan Živčec claimed the cost of liquid nitrogen was around €10,000 per week, whereas the real cost is between €5,000 and €6,000 per month.

Legal representatives from the law firm Vrtačnik have called for the enforcement of JAZMP’s decision, which mandates GaiaCell to take all necessary measures to preserve the cells. They urged the Ministry of Health to act in accordance with its responsibilities to ensure compliance with this decision. If the cells are lost, legal actions could be initiated against GaiaCell, potentially involving civil and criminal liability.

Despite the parents' repeated attempts to engage with the Ministry of Health, they received a message stating that they should submit a written request instead of attending in person. This response left them surprised and frustrated, given the numerous letters they had sent to the ministry in recent weeks. They feel abandoned and disheartened, having invested trust in the system to safeguard their children's future.

The protest attracted approximately 20 parents, each expressing feelings of helplessness and disappointment. Many believed that their investment in stem cell storage was justified based on the safety assurances provided. Matjaž Tavčar, one of the parent representatives, mentioned that he felt the investment made sense even considering all the security guarantees offered.

In response to the protests, JAZMP clarified that they are not responsible for facilitating financial agreements regarding tissue and cell storage activities or for executing such activities. Therefore, they will not participate in financial transactions related to additional supplies of liquid nitrogen. Despite this, the law firm Vrtačnik continues to push for direct negotiations between the cell owners and the companies GaiaCell and Istrabenz to secure the necessary gas supply.

Minister Tadej Ostrc acknowledged the issue during his visit to the General Hospital in Slovenj Gradec, expressing understanding of the parents' concerns and emphasizing the need for clear, transparent responses. He suggested that the matter involves a relationship with a private provider and reiterated the importance of competent institutions fulfilling their duties.

GaiaCell, however, has not commented directly on the situation. It is known that GaiaCell took over the samples from about 4,000 individuals in 2024, despite lacking a contract for alternative storage. The company has threatened to stop providing liquid nitrogen unless compensation is received, citing that it is not the legal successor to the Biobank. Approximately 400 samples were destroyed last year.

The parents remain determined to seek resolution through official channels, hoping that the new government will take swift action to prevent the loss of their children's stem cells. Their continued advocacy underscores the gravity of the situation and the urgent need for transparency and accountability in the management of sensitive medical data and resources.