Terje (76), cancer patient, has to pay for it himself

He is known as a two-team film producer with the director’s wife, Vibeke Løkkeberg, as director of culture and film at Ås and film founder at Aker Brygge.

But for Terje Kristiansen, the last few years have been heavily marked by a serious diagnosis of bone marrow cancer.

The disease has no cure. It has seemed dark several times, but never as dark as last fall, he tells Dagbladet.

After nearly ten years with the diagnosis, Kristiansen had gone through what was available of drugs and treatments in the repertoire of the public health service.

– There was no medicine that worked. The percentage of blood dropped to 5 percent. It was life-threatening, simply put, he says.

Free medicine

However, doctors at the Oslo Myeloma Center at Oslo University Hospital found a drug that was not approved for use in Norway, but they thought it would be worth trying. They were awarded.

Through the so-called compassionate use program (CUP), Kristiansen now receives the drug for free from the provider. This is a scheme in which drugs that have been shown to have an effect in clinical studies, but have not yet been formally approved, are offered free of charge by the industry at the request of the patient’s physician. Kristiansen entered a variant of the program called “named patient”.

Talk about a very good effect. Today he is in such good shape that he can race at Frognerparken and has plans to buy a spinning bike.

– All my blood values ​​have matched as if I had won a money lottery, says Kristiansen.

Expensive treatment

Although he has not been cured, he calls himself “currently fit.” Thank the new medicine for that. The drug, a product called Belantamab mafodotin, does not cost the Norwegian healthcare system a penny. The specialized health service has no other offer for him either.

However, he now has to pay to have the medicine delivered to the Aleris private hospital.

Everything he has in pension and income now goes to pay for treatment. To have something to live on too, he has had to sell valuables.

-I think it is heavy that I have to spend everything I have on treatment income, when it would be a very small expense for the health service, he says.

Even though it costs money, it still means that you are grateful that you can get the medicine from Aleris.

– What would I do without them? That is what we have as an alternative those of us who fall outside, he says.

New regulations

In Norway, a long-standing scheme has been in place in which the industry offers free medicines that have been shown to have an effect in clinical studies upon request from the patient’s doctor. But starting in 2018, the regulations were changed.

One effect of the rule change is that Norwegian public hospitals cannot market drugs that have not been approved in Norway.

It was in connection with the Spinraza debate that the regulations were changed. The drug, which was considered the most expensive drug in the world, raised fears that the healthcare system would take on a large bill for many years.

The reason was that drug companies were not required to provide free drugs to all patients and the government risked paying a high price for drugs when they were approved.

The result is a set of rules that must withstand much criticism, also from much of the professional community who believe it has gone too far. The Cancer Society is among the critics.

– Currently, almost no patient has access to medicines with this scheme in Norway. Seriously ill patients pay the highest price in an apparent game between industry and government, he says. General Secretary Ingrid Stenstadvold Ross of the Norwegian Cancer Society.

Listhaug at the Storting

Other seriously ill people are also affected by this.

Sylvi Listhaug (Frp) has been involved in the situation of ALS patients. Today she is promoting an inquiry upstairs in the Storting.

Here, he asks Health Minister Bent Høie to facilitate a plan in which ALS patients and others with serious diagnoses will have the right to try drugs according to the American “right to try” model.

In the United States, the scheme works so that once a drug has gone through the first testing phase, seriously ill people can try the drug.

– It’s about having hope when you are sentenced to death, as ALS is, Listhaug tells Dagbladet. When he first raised the issue, he was thinking about ALS patients, but then the phone started ringing.

– Consultations from others began to come in, he says. The cancer association was among those who made contact. The same did the interest groups for people with dementia.

– This is an issue that applies to many people who suffer from illnesses in which there is a certain lack of hope, says Listhaug.

I need to clean

It is especially important to do something in the area of ​​cancer, believes the FRP politician.

– When it comes to inequality in society, I think some of the most dangerous things that happen here have to do with cancer, he says and continues:

– If you have a thick wallet, you can buy treatment at home and abroad, medicines and take advantage of the rapid development that you are in cancer treatment. But many ordinary people don’t have this opportunity because they don’t have money. I think it’s a development we can’t live with, he says.

Dagbladet has confronted Health Minister Bent Høie (H) over criticism of changes to the “Compassionate Use Program” and the “Designated Patient Program”. The Health Ministry says it will answer questions at the Storting before speaking.

– I need to clean

Listhaug wants a cleaning.

– The first commandment now must be to clean. One must recover the old scheme if it works. So I think one should look at a “right to try” scheme that can give patients additional rights and hope in a dire situation.

– Is there not the danger of giving false hope to people, and that the last time you are left in a grueling treatment instead of saying goodbye to the family?

– I think it is a choice that people should make for themselves. It is clear that living completely without hope is a terrible situation. So if you can help him try the treatment and you want it yourself, there must be a choice you can make. You don’t need the public sector to override your desire there. When you are seriously ill, you are afraid of dying, not of side effects, Listhaug says.

Supported by the association against cancer

The Norwegian Cancer Society is behind the initiative.

– Our starting point is to give cancer patients and other patients an additional opportunity, either through the “right to try” or the “compassionate use program”, which has been a plan that has worked for many years, says Deputy Secretary General Ole Alexander Opdalshei at the Dagbladet Cancer Society.

He believes that an arrangement Listhaug proposes can help clear up a messy field.

– It is difficult to imagine what it is like to be in a situation like the one these patients find themselves in, before experiencing it for yourself. So you want to try what you can, it’s Opdalshei

– What we unfortunately see today is that it is cancer patients who go to dubious services in alleys of Germany or China. If you get an official chance, there may be more candor about how difficult this is for incurable cancer patients, says Opdalshei, who recalls that it doesn’t always end with a good outcome.

– Sometimes there is no miracle drug across the border that you don’t have access to. Perhaps it is not the new medicine that makes one experience an improvement, but a coincidence. The field of cancer, which is what I know best, is basically very good in Norway. But there are many cases where there are medications that may be helpful that you don’t have access to with us today, he says.

– Bureaucratic soup

Health South-East will also not comment on the practice, when it is debated politically today.

In a post in Aftenposten last year, they explained the rule change by saying that pharmaceutical companies with the old scheme were generally only willing to give free drugs to a limited number of patients.

“This led to differential treatment of patients who could potentially benefit from the treatment. When the drug finally received a marketing authorization, hospitals were forced to pay the maximum price for the drug.” It said in the mail signed by Jan Frich, director of Health South-East and Henrik A. Sandbu, director of Health Central.

Bureaucratic soup

From Terje Kristiansen, however, it is clear:

– This whole thing is a big bureaucratic soup. There are many desperate near-death people who are affected by this. This should be rectified in.

He says the parody of all this is that the purpose of the guidelines is that everyone should be treated equally.

– But it has led to a system in which no one receives treatment. People are about personal creativity, luck, and money. These are precisely the differences one would like to try to avoid, says Kristiansen.