Published: Less than 30 min ago
Medicines against the serious disease cystic fibrosis must be subsidized. The decision means that patients no longer have to bear the costs.
– Finally, we cry for joy. We have fought for this for 800 days, says Tina Gallone at the National Association for Cystic Fibrosis.
The announcement from the Dental and Pharmaceutical Benefits Agency (TLV) came on Friday afternoon. The drug has proven to be a breakthrough for people with the hereditary disease cystic fibrosis.
“Can make a huge difference”
Those affected have difficulty breathing, and without treatment many die early. The treatment can be given to children from the age of two, and with early treatment, permanent damage to the lungs can be avoided.
– I have met teenagers with cystic fibrosis who could not even walk from the sofa to the bathroom, but who after the treatment can run up the stairs. It can make a huge difference, says Tina Gallone.
It is the third time that the question of whether the state should subsidize the treatment is up for discussion. In the past, TLV has assessed that the treatment has been too expensive in relation to the benefit. Then it has cost just over 2 million a year per patient.
Agreement
That TLV now says yes is due to a special agreement between the authority, the regions and the pharmaceutical company behind it.
– Now we just have to make sure that it gets out to the care and the patients, says Tina Gallone.
A few of the Swedish patients have already had access to treatment. For example, they may have participated in a research study or received treatment at the company’s expense in a so-called “compassionate use” program.
The medicines that are now included in the high-cost protection are Kaftrio, Kalydeco and Symkevi. The drug Orkambi, which was previously subsidized, is also covered.
Facts
Hereditary disease
Cystic fibrosis is caused by mutations, gene changes that can be inherited. The vast majority receive their diagnosis before the age of three.
The mutation causes the mucus-producing glands in the body to not function normally and makes the mucus thicker and tougher than it should be.
Mainly it affects the lungs and the gastrointestinal tract.
Between 15 and 20 children with cystic fibrosis are born in Sweden every year. Around 700 people are currently known to have the disease throughout the country.
Sources: 1177 Vårdguiden and the National Board of Health and Welfare
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