The newspaper articles in front of me on the desk have started to turn yellow. The articles that went to press more than a year ago tell about Terje’s life struggle. He was close to death and the Norwegian healthcare system could not offer him more treatment, even though life-prolonging drugs were available. In vain he contacted his doctor at the public hospital and asked if they could administer the injections for free, but was refused because the Decision Forum had not approved the drug. This is how it works for terminally ill cancer patients in this country, when they seek help to prolong their lives. “It’s too expensive”, the response from the Decision Forum tends to be, when they are accused of stopping the introduction of already well-tested medicines in Europe. To get the life-extending medicine, Terje had to attend a private clinic every three weeks and pay NOK 40,000 for each injection. 40,000 is a high sum for ordinary people. Other cancer sufferers have to pay much higher amounts. It quickly adds up to millions. One evening on the news, there was a feature about a 42-year-old woman, mother of three children and affected by breast cancer with spread. Nor was she given a new medicine that has proven effective in other countries. “It’s so expensive,” said the leader of the TV-based Beslutningsforum. The costs outweighed the mother’s life extension. It is a heartless decision by a heartless society. I had hoped that the government, which should do the best for ordinary people, will also do the best for a young mother and her child. She cannot pay for the medicine, which is available at private clinics, she is one of the ordinary people the Labor Party would like to reach out to. Can’t the politicians and Decision Forum use their hearts more than their heads? At home with Vibeke Løkkeberg and Terje Kristiansen at Frogner in Oslo in April last year. Terje had been ill for several years, but the medicines made life good. Photo: Line Møller / VG One extra year for this family means everything, as it meant everything for Terje and us who loved him. The elimination of cancer patients begins with something that is hidden from most people: the public healthcare system in Norway does not focus on introducing the best treatments as quickly as possible. The time spent is on a par with Eastern European countries, while it is much faster in both the EU and the USA. We end up with a class law, where only the richest can afford the best life-extending drugs. If you don’t have the money, you have two options. You can resign and accept that death will come before it might have to, or you can embark on a humiliating public begging, create a Spleis, spread your medical history on Facebook. Hope someone will contribute. It may give you a longer life, but at a price I would not wish anyone to pay in a degraded phase of life. The phase that should be peaceful, with only those closest to you around. A sacred time with no demand for recompense to kind people who expect to be part of the race all the way through, as a thank you for their contribution. The lost and sick must neatly apply on Facebook instead of the Norwegian healthcare system. It’s just that on Facebook it’s also possible to fall outside the system if you only have three followers, don’t have celebrity status or profiled friends who can front the fundraiser – and maybe don’t have the right look or the right age either. Perhaps the less well-known and popular get some money from a kind neighbor, but unfortunately far from enough. Those who lose in the beggar’s carousel are wound up, terminated, degraded and humiliated. They know that they will soon die, without the Norwegian healthcare system or Facebook being able to safeguard their dignity. The last celebrity out is cancer-stricken Shabana Rehman. In her critical phase, she was abandoned by the Norwegian healthcare system and found herself forced to ask for large sums of money from her friends and followers on Facebook. Shabana needs and deserves every penny, but the money she has collected should have come from the Norwegian healthcare system. Then she was free to act like a gladiator with a gun pointed at her head, while she dances the dance of desperation. We follow her on her journey and admire her perseverance. She says that she wants to create an understanding of what it is like to be terminally ill in Norway and still have a desire to live. On Facebook and in her column in Nettavisen, she says that the treatment in Germany has given her more time, and enough quality of life that she has been able to do things she has wanted to: “I am painfully aware that for many sick Norwegians, yes maybe to most people, the opportunity I have had abroad is unimaginable”. I don’t know how it went with the 42-year-old mother I saw on TV, nor do I know how it went with her three young children. It’s been a long time since the TV show, and in October it will be one year since Terje died. The empathy that lies in supporting and helping the lost who wants an extended life on earth can mean everything to the person concerned and to those who love him or her. We were among the privileged few who could pay. Terje’s last medicine extended his life by one precious year to the joy of all of us. It gave us a glorious time, during which he acted as healthy and without symptoms. There were months where we had a rise so intense and close that I remember every one of you. The fact that his life was extended meant, among other things, that he could be there longer for his grandchildren. Leon, who was born after Terje was diagnosed, got to experience 7 years of his life. Matteo is five years old and still believes that grandpa is around him every day. Siena, aged 15, already had a well-established relationship with her grandfather. They all looked to him as a role model and a great protector and problem solver. His optimism and friendliness created a warm and predictable atmosphere of security. He was there for us. For his daughters and his grandchildren. Vibeke and Terje (1974). Photo: Privat Extending the life of a cancer patient is important far beyond what it is for the patient himself. I want Norway to raise the quality of cancer drugs, and that ordinary people should be treated for free when there are new and more effective drugs, not as in our case where we had to pay NOK 40,000 every three weeks. Getting a “yes” from society when you are at your lowest point is a sign of mercy and compassion, perhaps soon extinct virtues in our society. If we don’t soon turn around, and recognize that deep down in the heart there is reason.
ttn-69
