Outside the Storting, representatives from 11 patient organizations gather on Thursday to send a clear signal that no one is running out of patience.

They are represented by 11 of a total of 26 organizations that have stood behind one joint appealin the hope of capturing the attention of the health authorities.

Common to all the organizations is that they despair that their patients do not have access to vital treatment and medicine.

– People mortgaged their houses and collect money to finance treatment through the private sector in Norway, or abroad. Others die while they wait, says Ingrid Stenstadvold Ross of the Norwegian Cancer Society, who is the initiator behind the appeal.

– Enough is enough

The background for the appeal is the fact that Norway spends even more time with more of our neighboring countries to use new treatments and medicines.

A recent evaluation of the decision-making forum for new methods revealed that Norway spends significantly longer even more of our neighboring countries on introducing new treatments.

I follow a survey based on figures from 2016-2019, it takes 376 days from the time a new medical method is approved by the EU Medicines Agency until the method is available in Norway.

In comparison, it takes 94 days in Denmark and 196 days in Sweden.

– We do not understand why Norway spends more time adopting new treatment methods in the public health service, than other countries with which we can compare ourselves. We are talking about approved medicines, but most often the price is what it says, says Stenstadvold Ross.

Mistar breaths while waiting

Through a series of reports, TV 2 has told about 32-year-old Helen Abelsen and 39-year-old Christian Lawley. They are two of about 400 patients in Norway who have the serious and hereditary disease cystic fibrosis. They are desperately waiting for the Norwegian health service to use the life-prolonging drug Kaftrio.

This meaning has been used in over twenty countries, including Denmark. In Norway, negotiations on a price are ongoing for the fifth month. The drug has been approved by the EU Medicines Agency for over 600 days, and over a year ago, patients have received help with Danish aids.

– This case clearly shows that the system for New Methods does not work for rare diseases, says Ellen Damhaug Scheel, daily leader of the Norwegian Association for Cystic Fibrosis. They are among the organizations that no one has supported the appeal.

Request change

As before Easter, Frp put forward a representative proposal to provide faster access to medicines for Norwegian patients.

Among other things, they are asking the government to ensure that the health authorities and willingness to pay are extra to be at the same level as comparative countries in Europe.

I add that they are reorganizing the whole system for new methods.

– It is wrong for four directors to make these decisions. I have to get patients, doctors and family members into the decision-making forum. In addition, I have to look at the total cost. It costs a lot when people get sick and the disability benefit as well, says Listhaug.

The FRP leader has engaged in the case of cystic fibrosis patient, and thinks the situation is not tenable. She says it is a shame that Norway is the worst when it comes to using new medicines.

– I think it is terrible that a rich country like Norway is so behind. This leads to a class divide where those who have money can buy help, while others struggle against a system that does not work, says Listhaug.

FRP itself was involved in legislating the System for new methods in 2019, and has voted in favor of the priority report which lays down the criteria for which medicines are to be introduced. Now she wants to change the whole system.

– We now see that it does not work. Then I can not continue the system as it is today. Laws exist to change when they do not work.

– Apples and pears

Minister of Health and Care Services Ingvild Kjerkol (Labor Party) says they will read both the representative proposal to Frp and the requirements for patient organizations carefully.

– I have recently evaluated the system for new methods, and I have initiated measures based on the evaluation. It is important for us to get the case processing time down, and the trust up.

She emphasizes that they have already commissioned the regional health authorities to take measures in these areas.

– Why does Norway spend so much more time than our neighboring countries adopting new methods?

– We are not so bad on the statistics, but often you compare apples and pears. In Denmark, it is the regional that takes in new drugs, while in Norway, all patients get access at the same time. The goal is for me to have access to new therapies quickly and well, but at the same time be able to take care of all patients who benefit from old therapies and existing medicines.

– Is the Norwegian healthcare system worthy of patients dying while they wait to use new medicines that they know will save their lives?

– Serious diseases with available treatment method, I want to be available for Norwegian patients as soon as possible. Then we must get prices from the industry that make it possible to use them quickly. I have customers like everyone else, says Kjerkol.

Fear faster rejection

The patient organizations believe that measures to reduce case processing time alone are not good enough.

– There is great expertise in reducing case processing time for individual actors in New Methods, and in ensuring patients faster access to new treatment methods. Fast case processing can mean a faster “no”. It does not help patients, says Stenstadvold Ross.