The pharmaceutical companies that produce the SMA medicine sold several billion kroner worth of the medicine worldwide in 2021. The oil fund has invested in the companies, which are both making a profit. At the same time, the Norwegian authorities say that the price for the medicine is too high for adult patients to now be able to get the life-saving medicine. They are now negotiating with the drug companies. Meanwhile, a small family in Bodø sits and waits. They are perhaps the only ones in the world where both father (37) and daughter (5) have the brutal disease spinal muscular atrophy, SMA. Christmas peace soon descends in the living room of the Bendiksen family in Fauske. Dad is still waiting to receive the life-saving medicine. Photo: Andreas Trygstad / news – Why doesn’t dad get medicine when I do? – Do you think this piece should be here? Can you help me? Piece by piece, the pieces of the puzzle are put together. Dad, Kenneth Osbakk Bendiksen, can still help his 5-year-old daughter with puzzles. But he doesn’t know how long. – Everything you love is taken away from you, everything you like to do like chess or billiards. Bit by bit because the disease develops, says Osbakk Bendiksen. A stack of empty medicine boxes on the chest of drawers in the hallway has become an important symbol for the small family. At the same time, it is a strong witness to how brutal medicine prioritization in Norway can be. The boxes show how many times the small family of three has been to Rikshospitalet in Oslo, and they show how many times the 5-year-old daughter has received the life-saving medicine, Spinraza, over the years. Photo: Andreas Trygstad / news But they also show how many times dad, Kenneth Osbakk Bendiksen (37), has not received the medicine. He has been watching while his daughter has been given the medicine which means that she will not develop symptoms of muscle wasting in the future. At the same time, the disease develops slowly in Dad. – That he has this medicine in front of him all the time, but doesn’t get it. I think that is extremely painful, says his wife Jeanette Bendiksen. The 5-year-old daughter has asked mum and dad why she gets medicine and not dad. It is not easy to explain to a 5-year-old girl, who would like to exchange her medicine for vitamin bears. The end of negotiations Since 2018, adult SMA patients have been waiting to receive medicine. Then the Decision Forum for new methods decided that young people under the age of 18 could get it, but not adults. The medicine is too expensive and the documentation on the effect for adults was weak. Since then, another pharmaceutical company, Roche, has produced medicine, in addition to Biogen. The state and the pharmaceutical companies have been negotiating for a long time about introducing the medicine, also for adults. They have agreed that the state will only pay for patients where the medicine is effective, but they still do not agree on the price. Inger Cathrine Bryne is director of Helse Vest and head of the Decision-Making Forum for new methods. Photo: Kjetil Alsvik – Initially, these medicines have a very high price and it is important to have a good and constructive negotiation so that the price is right for all parties, says Inger Cathrine Bryne, director of Helse Vest and head of the Decision-making forum for new methods . She clarifies that constructive negotiations are taking place, but that the starting price as it stands is several million kroner. The decision-making forum meets once a month where they decide whether new medicines should be given to patients. After the last meeting a week ago, they write: “The starting point is demanding, because the companies have chosen a very high price level while the documentation is weak”. – We are waiting for us to reach a price level that both parties find acceptable, and this will usually mean that the pharmaceutical companies will also stretch so that we can reach that meeting point, says Bryne. At the same time that Norway has not yet agreed to expensive medicine, the pharmaceutical companies make good profits – and the Norwegian state has shares in the companies. READ: – From an economic perspective, I should have had an abortion Sold for billions in 2021 The pharmaceutical company Biogen sold the SMA medicine Spinraza for 1.9 billion dollars worldwide in 2021, around 18.8 billion NOK at today’s exchange rate. That was down from 2020, where the company earned over $2 billion. This is shown in the annual report for 2021 to Biogen. The reason given for the decline in sales is that competing medicines came on the market. The company writes in the annual report that: “The decrease in sales of Spinraza comes mainly from a decrease in demand as a result of increased competition in the USA and Germany, and a decrease in the price in the USA and the rest of the world market, partly as a result of an increase in sales volume in South America and certain distribution markets” (Our translation, see fact box for English original text). Annual report 2021 Biogen In Biogen’s annual report you can read the following about earnings on Spinraza: In SMA, the global expansion of SPINRAZA contributed to incremental revenue growth year over year outside the US Our work in biosimilars has accelerated over the past few years as we strive to bring greater value to healthcare systems and access to patients while enhancing our own cash flow generation opportunities. (s. 3) The decrease in SPINRAZA revenue was primarily due to a decrease in demand as a result of increased competition in the US and Germany as well as a decrease in pricing in the US and rest of world markets, partially offset by an increase in sales volumes in Latin America and certain distributor markets. The annual report itself can be found here: 279275___BMKLPDF_LAN_27Apr202202334033_002.PDF (biogen.com) The pharmaceutical company Roche has also produced medicine for SMA patients. The drug Evrysdi is now on the market and is offered to young people under the age of 18 in Norway. Roche states that they sold for 602 million CHP (Swiss francs), which at today’s exchange rate is NOK 6.4 billion. – We cannot say that something is too expensive and at the same time invest in the same companies, says Ola Schrøder Røysum, head of the patient organization SMA Norway. He also has SMA and is one of those waiting for the negotiations between the state and the medical companies to be completed – because of price. He reacts to the fact that the Oil Fund has invested in the companies, and that they have a turnover of billions at the same time that the Norwegian state says no to around 60 adult patients receiving the medicine. – I can’t see that it’s okay, says Schrøder Røysum. The Oljefondet invests in the companies Norges Bank Utland, or the Oljefondet, has invested in both Roche and Biogen. In Roche, Oljefondet has a share purchase of 2.06 per cent, and has invested NOK 65.2 billion. The oil fund has also bought so-called interest-bearing securities in Roche for NOK 1.4 billion. In Biogen, the Oil Fund has bought interest-bearing securities and invested NOK 242 million. I think we will agree – We will lower the price in order to reach an agreement, says Erlend Engh-Brekke, communications director at Roche. Erlend Engh-Brekke, communications director at Roche, believes they will agree with the Norwegian authorities on the price of medicine for adult SMA patients. Photo: Even / Bjøringsøy Johnsen He says they do two things: For the adults, the effect is more uncertain. Therefore, we reduce the price, and make an agreement which means that the state will only pay if the medicine is effective. – What I can guarantee is that we will lower the price and give a price that we think we can agree on, says Erlend Engh-Brekke. Biogen tells news that they also hope to reach an agreement so that adult patients can also receive medicine. Roche says they have spent many years developing medicine for Spinal Muscular Atrophy, and that through the agreements they have with various countries they have to earn back the investment. – We are very happy that we have managed to create a medicine for this patient group. It is a small patient group, so it is not a matter of course that we choose to invest in it. When we do that, we also have to recoup that investment. We do that with the agreements we have with the individual country. Those agreements are adapted to the individual country’s ability to collect health data and pricing, so there is differentiated pricing between the countries, says Engh-Brekke. I want to include my childhood too – I only have one childhood with my daughter, and I want to contribute as long as I can. The medicine does exist, so it’s a bit difficult, says Kenneth Osbakk Bendiksen. He is afraid that the disease will develop so that he cannot monitor his daughter as much. – Assistants can do a lot, but they can’t pat her on the back or put puzzle pieces in place.
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The companies sold life-saving medicine for billions – the state believes the companies’ price is too high
