The 42-year-old father of two, Kristoffer Gustavsson from the municipality of Marks suffers from a hereditary variant of the disease ALS, the so-called SOD1 variant.
There is a new medication that has been shown to be effective in slowing down this particular variant of ALS, but Kristoffer cannot get it prescribed. It was P4 Seven-way first to report on.
– Imagine that there may be medicine that can save life, but no one wants to do anything to give me that medicine, says Kristoffer Gustavsson to TV4 Nyheterna.
– It’s like being in the darkest nightmare, he continues.
When TV4 Nyheterna talks to Kristoffer, he has his wife, Kristina, next to him. But she can’t handle talking about her husband’s illness without breaking down.
– It’s tougher to stand by and see how the other is fighting for something, says Kristoffer.
Waiting for support
The new medicine, Toferse, which is described as ground-breaking, has been approved in the USA and the European Medicines Agency, EMA, has given the go-ahead for the medicine to be recommended for patients with SOD1 gene mutations within the EU. But the NT Council, the regions’ cooperation model for medicines, has urged the regions to hold off on prescribing the medicine pending documentation.
The NT Council has for a year been waiting for documentation from the pharmaceutical company to be able to assess the effect and cost. Something that can linger over time.
– If I wait too long, the disease will only spread and I will only get worse and worse every day. In the end I become a vegetable, says Kristoffer.
Getting the medication prescribed would mean everything to him, he says
– I could get the hope of life back and be able to focus on my wife and my children instead of focusing on contacting various authorities.
– It feels like they are letting me decay in my body.
The NT Council responds
The NT Council responds in a written comment to TV4 Nyheterna that they are aware that there is a great need for the medicine in Sweden.
“We are keen to deal with this urgently because there is a great need for medicines for patients with this disease,” writes the NT Council’s chairman, Åsa Derolf.
“In order to move forward, we need a health economic basis from the pharmaceutical company. We asked for that in June last year and we have recently received word from the company that it will arrive shortly,” she writes further.
TV4 Nyheterna asks if the council has made any further efforts or attempts since last June to speed up the process. But the NT Council replies that the responsibility lies with the pharmaceutical company.
“This is an established process that the company is very familiar with, i.e. it is their responsibility to submit supporting documents when they have been informed that there will be national collaboration,” answers Åsa Derolf.