Journalist Sindre Thoresen Lønnes (Hallingdølen newspaper) used INJECT to investigate an extremely rare and serious disease that patients were not being treated for in Norway.
Spinal muscular atrophy (SMA) is an extremely rare genetic disease that can eventually lead to patients losing their ability to walk. In Norway there are 85 people who have the disease, but they had trouble getting proper treatment. As the Spinraza medication for the disease is really expensive, the Norwegian government refused to pay for it.
Journalist Sindre Thoresen Lønnes (Hallingdølen newspaper) started investigating this story last October using INJECT to support the exploration of different angles for his articles:
“I found too much inspiration for my story, so then I found the login feature really helpful. That way I could bookmark articles and use them later. I’ve been writing about this medicine for two or three months now.”
He followed two SMA patients living in the newspapers’ region Hallingdal, and using INJECT, Sindre learned about other cases around Norway as well. Looking for ‘Spinraza’ with the Individuals search strategy in INJECT, he found people that had recently been written about in connection to SMA medication outside of the newspaper’s coverage area.
The Norwegian government has recently decided to start covering the medication for SMA patients. The original price was about one million Norwegian crowns per injection (about 100 000 euros), but the government negotiated an unknown discount.