By: Moja Dolenjska
Many people are angry with the ruling party, Freedom Movement, because its MPs voted against medical treatment abroad for children with rare diseases. They believe we should remember their names.
At Thursday’s session of the Committee for Petitions, Human Rights, and Equal Opportunities, chaired by SDS MP Jože Tanko, the committee discussed the state’s responsibility to ensure and fund treatment for children and adolescents with rare diseases.
Tanko emphasised: “If there is a possibility to treat a child abroad, the state must cover it – life comes first, then formalities.”
He explained that most new drugs are developed in the USA, and since the European Medicines Agency (EMA) has not yet approved them, the treatments must be performed abroad. These procedures cost millions of euros, which parents cannot afford on their own. If such treatment abroad exists, beyond the reach of the EMA, the state health insurance, which collects public funds, is obliged to cover the costs.
Currently, treatment costs are not covered by the health insurance, and parents of children with rare diseases must collect bottle caps, organise charity events, and seek donations and sponsors. They must publicly expose their deepest distress, which is exhausting, humiliating, and a major invasion of privacy, as Tanko pointed out.
The ruling coalition rejected all committee proposals, claiming that everything is supposedly provided for in Slovenia, while money that could go to sick children is happily spent on other things – for example, measuring heat in the Nova Gorica area, to which nearly one million euros were allocated at the last government session. Allegedly, they are also generous with our money for children in Gaza.
At the committee session, the Freedom Movement MPs voted against the proposals by Jože Tanko, while Levica abstained. The committee has 15 members, and 13 voted: 6 in favour, 7 against.
Voted against:
Jožica Derganc (Freedom Movement), Novo mesto
Vera Granfol (Freedom Movement), Murska Sobota
Miha Lamut (Freedom Movement), Celje
Gašper Ovnik (Freedom Movement), Trbovlje
Aleksander Prosen Kralj (Freedom Movement), Postojna
Lucija Tacer Perlin (Freedom Movement), Ljubljana (Vič–Rudnik)
Sara Žibrat (Freedom Movement), Ljutomer
Abstained:
Tatjana Greif (Levica), Maribor
Voted in favour:
Alenka Helbl (SDS), Radlje
Franci Kepa (SDS), Trebnje
Anton Šturbej (SDS), Šmarje pri Jelšah
Jože Tanko (SDS), Ribnica
Meira Hot (SD), Piran
Aleksander Reberšek (NSi), Vransko
Yesterday, we reported a broad fundraising campaign in Dolenjska region to help little Lora from Uršna Sela, and around Ribnica, funds are being collected for a sick boy named Jaka.
One Facebook user wrote:
“This is a boy condemned to an early death by coalition MPs when they rejected the possibility of treatment with gene therapy abroad. He is 9 years old, his name is Tit, he lives in Trbovlje and suffers from Duchenne muscular dystrophy, which is slowly destroying his body, but a treatment exists in the USA, which is not available to him. He is just one of ten boys who urgently need this treatment; otherwise, they become ‘plants,’ and while healthy children leave for university, these children go over the rainbow. Freedom Movement MPs, where is your conscience? It seems you have none.”
She also posted a photo.
The MPs who voted against show no conscience. In particular, we can highlight Jožica Derganc (Freedom Movement) from Novo mesto, who voted against, even though little Lora from Uršna Sela is practically her neighbour. As a nurse and educator at a local kindergarten and a longtime union member of Štrukelj’s union, it is possible she even knows her personally.
From Trbovlje, where little Tit comes from, is also Gašper Ovnik, a Freedom Movement MP who was elected there. To make the tragedy worse, he was previously a physical education teacher at the Ivan Cankar Primary School in Trbovlje. Apparently, he also has no conscience.