Biogen explains why Spinraza is so expensive! (The Statens legemiddelverk criticizes the company behind Spinraza)

UPDATE by Liz Andersson d. 27-10-2017 ▶ What was once called ”miracle drug”, lays down slowly a dark shadow over Spinraza. Scandinavia has nothing more to lose. Physicians from Norway respond to Biogen’s explanation; ” why the drug is so expensive”. More and more things are coming to light, which may be part of public discussion. Read below commentaries

Biogen getting sharp criticism in cuple weeks, because some countries can not afford the drug and the price is too high. Now Biogen speaks why this is so. In a recent report says Biogen, why is the cost so high. Only in the last 3 months make the company profit with the drug. Don’t forget; Biogen has not developed the drug itself. There must be new funds to be able to develop further medicines

The story began with Spinraza in year 2004th. This was as a public-private partnership, including the patient organization Cure SMA who donated 4 million dollar. The organization Cold Spring Harbor Laboratory was responsible for the development together with the pharmaceutical company Ionis Pharmaceuticals.

The researchers had discovered an active substance that could compensate for the genome of SMN1, which is the cause of spinal muscular atrophy. The disease leads to muscle weakness and causes many of the children with the most serious form, not to sit or to keep their heads up.
In 2012 Biogen acquired the rights to the active ingredient, which allows many of the children to be mobilized again. The study was discontinued last summer because it was considered unethical not to give the drug to the children who were in the control group.

On Tuesday, Biogen’s quarterly report was published, showing that the company’s sales have increased by four percent since last year. The growth is driven by the start of Spinraza, which in July, August and September amounted to only 2.1 billion.
The majority of sales come from the USA, but sales in Europe, where Germany and Turkey are leaders, are growing.  In Denmark, Norway is the therapy is not accessible for all forms of SMA, but only for SM type 1.

The fact that the drug is the only one that works on a severe and rare disease shows a high willingness to pay.
At the same time, the professors show that cooperation between non-profit organizations, patient organizations and companies is crucial for the successful development of medicine.

As we already thought and so often said, there is the problem. The Nordic countries will not be able to manage the high price of Spinraza, due to their not too large population density. The health care system is financed through taxes. In Germany, every citizen is in a health insurance company that takes over these costs. These health insurance funds work independently of communes and doctors. It is a separate system and it is not financed through taxes.

Biogen profit beats on surprisingly strong Spinraza sales