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Pernilla Becker, 33, has for several years struggled to have her medicine included in the high -cost protection.
And this week, the message finally came.
– It feels extremely big, she says.
Pernilla’s medicine forces her to China: “No one does anything”
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Pernilla Becker, 33, lives with the disease SMA, spinal muscular atrophy.
The disease, similar to ALS, makes the muscles gradually disappear and finally it causes breathing to cease.
In 2017, a first medicine was approved for the treatment of SMA. And the drug Evrysdi came a little later.
The medicines can slow down the course of the disease and partly also build strength that has been lost in the muscles.
Age discrimination
But until now, the medicines have not been available to all patients. When the first drug came in 2017, a decision was made that only children affected by SMA would receive treatment with brake medication.
Pernilla Becker, as well as a few other patients over 18 in 2017, were not included.
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Full screen pernilla Becker, 33, lives with the disease spinal muscle atrophy. Photo: Lotte Fernvall
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Full screen72 individuals did not receive the medicine subsidized in Sweden. Photo: Lotte Fernvall
Aftonbladet has previously reported on how Pernilla Becker was forced to travel to China to buy medicine, as the price there was a fraction of what it cost in Sweden.
“It feels unreal that I go to the other side of the earth to buy a medicine that I should in every way be entitled to in Sweden,” she told Aftonbladet.
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Full screen brake medicine Pernilla early bought in China. Photo: Lotte Fernvall
“Feels unreal”
But now Pernilla Becker’s fight has finally produced results. The medicine Evrysdi will be included in the high -cost protection from 1 February.
This means that the drug is subsidized for all patients.
– It feels both unreal and extremely large. We have been struggling for so long for this, for this justice, says Pernilla Becker.
She says that Aftonbladet’s previous report on her and her struggle for justice had a major impact.
“People stopped me in town after that article,” she says.
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Full screen “I lose features I have had before,” says Pernilla Becker. Photo: Lotte Fernvall
“We did the right thing that never stopped arguing”
Before the process is fully completed, the NT Council, which is a group of representatives of Sweden’s regions, must give its recommendation.
The Council gives recommendations to the country’s regions on the use of new drugs.
– Despite the very gratifying decision, there are still question marks. We are now monitoring the NT Council’s assessment. If this would entail any restriction, we are prepared to continue to fight for our rights. But the message is clear. There has never been a medical justification for the age division, and we did the right thing that never stopped arguing with the system, says Pernilla Becker, finishing:
– I hope the trips to China are now history, she says.
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Full Screen Pernilla Becker hopes she doesn’t have to travel to China to buy medicine more times. Photo: Lotte Fernvall
Factsma, spinal muscular atrophy.
Square1 spinal muscle atropids, SMA, is a group of hereditary diseases, where motor nerve cells in the middle brain, extended marrow and spinal cord are broken down.
Square1 degradation leads to muscle weakness and muscle loss.
Square1 SMA occurs in varying degrees of difficulty, but usually the symptoms are similar within the same family. In general, the earlier the symptoms appear, the more difficult they become.
Source: the National Board of Health and Welfare
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