Danish patients out of organ queue
In Denmark, patients with cystic fibrosis (CF) are out of the lung transplant queue: They have been so healthy from the controversial pill that they no longer need a transplant. – It is a scandal that Norwegian patients do not get the pill, says Ellen Damhaug Scheel in the CF association.
– In Copenhagen, we have transplanted 113 patients with CF since 1992, corresponding to 3-4 per year. Since 2019, we have not had any CF patients on the waiting list for lung transplantation, says medical director Michael Perch at the Danish national lung transplantation program at Rigshospitalet in Copenhagen to VG.
In Denmark, patients with the hereditary disease but cystic fibrosis (CF) have been given free access to the American Katrio, which provides a great improvement in the picture of the disease.
In Norway, CF patients do not have access to the pills on a blue prescription because the body Decision Forum has not reached an agreement in the negotiations with the American pill manufacturer.
But: The decision forum included Monday’s treatment of Kaftrio as a matter at the meeting which is to be held on Monday morning, so that something can happen in the case already on Monday.
Perch says they see that the pills provide a better health situation, as VG has mentioned several times.
– Fantastic
Head of the cystic fibrosis clinic at Rigshospitalet in Copenhagen, chief physician Tania Pressler, said the following to VG before Christmas:
– The result has been fantastic, where many have had increased lung capacity by 20–30 percent. They get more energy and report a much better life, she said.
– No longer needs a transplant
Perch says he predicts knowing of a patient who was set up for a transplant who has become so healthy that he no longer needs a transplant.
– I know of at least one patient who was examined and ready for transplantation, who is exposed indefinitely due to improved lung function after using medicated Kaftrio.
He adds that it may be others who have been exposed to start a transplant process after starting up Kaftrio, without having heard of it.
– This is fantastic news from Denmark. I wish I could be the same about Norway, but here unfortunately the opposite is the case. Lack of progress is a scandal, says general manager Ellen Damhaug Scheel of the Norwegian Association for Cystic Fibrosis.
– 600 days
On Tuesday, she sent a letter to the Ministry of Health, in which she must handle such that Kafrio can also be approved in Norway.
“We risk our patients dying in anticipation of a pill that could save their lives,” says Scheel.
She has now been 600 days since the European Medicines Agency EMA approved Kaftrio and 30 countries have approved them.
– Do you know that any of the Norwegian patients have passed away while waiting?
– No, we do not have that, but when the lung capacity is down to 20 percent and the lungs are filled with more and more mucus, then you know that you will face certain death if they do not get access to Kaftrio.
– So I’m so damn good
Scheel says the cf patients are actually completely innocent.
– They have inherited a deadly disease. It is not their fault that they drew that lot in life. So I am so cursed that Norwegian patients suffer when there is actually a medicine that can save them.
The price is most important because the pills have not yet been approved in Norway.
What price Denmark and other countries have agreed to is secret and unknown.
In Norway, the pills are sold in pharmacies for 227,000 kroner a month.
VG wrote in June last year about Ellen Winther who can not afford to buy the pills and about a family in Oslo who use the family’s savings to help her young daughter to a better life – by buying the pills.
Must see handling
Scheel says that debate is unworthy.
– When Denmark and other countries can afford it, so can Norway. And when you see the socio-economic consequences in Denmark, where CF patients no longer need a transplant, then we must see the handling.
Denmark gave the cf patients access to Kaftrio in 2020.
Adds gentle pressure
State Secretary Karl Kristian Bekeng in the Ministry of Health and Care Services says they can not put political pressure, but he still gives the signal that he wants a solution soon:
– Kaftrio is a pioneering drug treatment for patients with cystic fibrosis, and we want the negotiations to come to a solution soon. It is the hospitals that through New methods and decide which treatments are to be offered in the specialist health service.
He adds that it is the Storting that has decided that this must be the case “to ensure equal access to high-quality health services”.
– As soon as possible
Baard-Christian Schem, one of four subject directors who gives advice to his managing directors in the regional health authorities, which in turn constitutes the Decision Forum, this in an email to VG.
“We have a great understanding that this is difficult. Decision Forum has all the way meant and worked for, as we have stated before, that Kaftrio is a drug we want to use in Norway ».
He emphasizes that “there is a constructive and active dialogue with the pharmaceutical company and that they can therefore not comment on the matter further.
“The goal is still to be able to offer Kaftrio to all relevant patients in the country as soon as possible.”