– The reasons given by Rikshospitalet for refusing me a transplant prove illegal age discrimination. The process at the front appears to be pure spectacle. They simply sorted me out, says Anders Andersen.
Yesterday, Dagbladet told about the battle the 76-year-old is facing against Rikshospitalet.
He claims the hospital broke national guidelines when, without the necessary investigations, they refused him allogeneic stem cell transplantation i 2022.
SAYS NO: Rikshospitalet refuses Anders Andersen bone marrow transplantation. Photo: Kristin Svorte Show more
The action programthe national guidelines that the country’s blood disease experts must adhere to, state that no upper age limit has been set for the treatment, but that it is rarely given to patients over 75.
Andersen was 74 years old when Rikshospitalet first refused a transplant.
Transplantation is the only treatment that can potentially cure his mortality MDS-disease.
He has now complained about the hospital to the Discrimination Board.
– Hidden age limit
Andersen believes that Rikshospitalet has admitted that an illegal sorting is taking place, that they operate with a hidden age limit when deciding which patients can receive a transplant.
He refers to the rejection he received after a meeting of the National Group for Allogeneic Stem Cell Transplantation on 30 May 2022.
There, the hospital writes that transplantation, in disease cases like his, with dangerous gene changes and great complexity, is “controversial and is performed in principle only in younger patients” who are not weakened by other diseases.
– I have seen studies that show that people with this type of high-risk disease have benefited from transplantation? Isn’t that so?
– Yes, but it is in the order of magnitude…let’s say below 20 per cent, says head of department and professor Geir Erland Tjønnfjord at the hematology department at Rikshospitalet.
– That’s a big percentage, isn’t it?
– Yes, but listen here. If we’re going to transplant, if we’re going to use the money like that, then we have to shorten the lives of eight to extend the lives of two. Are you interested in paying for it? How will the healthcare system survive then? We are not here to harm, but to help, says Tobias Gedde-Dahl, leader of the National Group for Allogeneic Stem Cell Transplantation.
TRANSPLANTATION EXPERT: Tobias Gedde-Dahl heads the National Group for Allogeneic Stem Cell Transplantation. Photo: Nina Hansen Show more
Andersen sees it differently. He points out that the patient’s own wishes must weigh heavily, and that doctors are obliged to inform them of the risks of complications and death before the patient decides whether this is a treatment he wants to risk.
– In my case, the doctors estimate that I will be dead within a few months. Transplantation, which has a significant risk of death, would give me about a 20 percent chance of a significantly longer life. That is the balance in my case, says the 76-year-old.
The refusal not processed
When Tjønnfjord rejected the first transplant referral from Ahus in January 2022, the National Hospital had not carried out any own examinations of Andersen.
The case was also not submitted to the National Group for allogeneic stem cell transplantation.
– Why not?
– Because there was no indication at the time to do anything. It was not an indication for treatment, says Tjønnfjord.
– I have read that you should start treatment as early as possible, not wait until the disease develops. Isn’t that so?
– Yes, replies Tjønnfjord, and puts in a short pause before continuing:
– Then on to the next point of having a treatment… it should have a reasonable probability of success. And we must not harm the patient, says Tjønnfjord.
Never transplanted so old
Gedde-Dahl responds as follows to how Tjønnfjord could refuse a transplant, without the case having been submitted to the National Group for Allogeneic Stem Cell Transplantation.
– We must receive an application from those responsible for the patient, in this case Ahus, before we admit him to the group.
– And an application is not a referral?
– Yes, yes, says Gedde-Dahl.
– Then there was an application, right?
– Yes, but it was not found relevant for the group at the time.
– Have you ever transplanted someone who is over 74 years old?
– No, not over 74, as far as I know, says Gedde-Dahl.
Tjønnfjord points out that they must look at the probability of success and the risk that the treatment could lead to fatal complications.
– There is no age discrimination. We do not operate with any age limit, but it is the case that the risk factors linked to these things increase with increasing age, says Tjønnfjord.
ALLOGENOUS STEM CELL TRANSPLANTATION: Transplantation is the only treatment that can cure the malignant blood disease MDS. view more
Gedde-Dahl also rejects that age alone is a criterion.
– An overall assessment is made, and then it is the case that the risk of complications increases with age. But then there is a difference between us, as you know. Someone can be biologically younger and be 74 and vice versa.
– Why are people older than 74 not transplanted?
– It is not the age itself. We have assessed patients who are older, claims Gedde-Dahl.
Although the action program states that there is no age limit, but that the treatment is rarely given to patients over the age of 75, Dagbladet knows that patients who have reached the age of 74 are virtually never transplanted at Rikshospitalet.
The state administrator in Oslo and Viken believed in both 2022 and 2023 that the Rikshospitalet acted in line with good practice when they refused Andersen’s transplant.
In his decision in 2022, the state administrator comments on Andersen’s claim that he is age discriminated against.
“We note that the guidelines do not specify an upper age limit for the treatment, but that age will be included as part of the overall assessment for all patients. It is known that due to biological changes in all organs with increasing age, we all become more vulnerable to complications and death,” it says.
– Not justifiable
When it comes to Andersen, Gedde-Dahl points out that there is discussion in the professional community about transplantation in disease cases such as his is controversial.
– This means that one can ask questions about whether this is an established treatment for his category of illness. We allow the uncertainties to benefit the patient, but here we are in a situation where we are so sure that by transplantation we are shortening his life and acidifying it to a considerable extent, so we cannot say that it is justifiable.
Andersen believes that when Rikshospitalet refused a transplant in 2022, they took away his best chance of being a long-term survivor – a question Rikshospitalet does not want to answer.
– Back then my prognosis was significantly better than it is now, but they weren’t even interested in investigating whether I was a candidate for the treatment, Andersen says and continues:
– Now I know that the chance that I will tolerate a transplant is significantly less, because my disease has been allowed to develop.
CRITICAL: Anders Andersen believes the Rikshospitalet has broken national guidelines. Photo: Nina Hansen Show more
New research, published in recognized Journal of Clinical Oncologynevertheless shows that over 20 per cent of patients with similar risk factors to Andersen’s are still alive three years after transplantation.
– Faced with the alternative, which is certain death, I might be willing to take that chance, says the 76-year-old.
– Would resign
It’s a chance Gedde-Dahl is by no means now willing to take.
– If I had been forced to transplant him, I would have resigned and found something else to do. I think quite a few others would have too. Who wants to work in a system that kills people and doesn’t prolong them? It really goes without saying.
Gedde-Dahl states this with reference to the fact that Andersen has claimed that he has a legal claim to allogeneic stem cell transplantation.
According to a circular from the Ministry of Health and Care from 2019, a patient can have such a legal claim if the treatment is the only one that can help against an illness.
Andersen’s problem is that this provision only comes into force if the doctors believe the treatment is medically sound.
The 76-year-old believes that Rikshospitalet had no basis for claiming that transplantation was unjustifiable for him in 2022, since they failed to investigate how risky his illness actually was at that time.
If Rikshospitalet had found that transplantation was justifiable at the time, he would have had a legal claim to the treatment.
– In a legal society, it is a declaration of bankruptcy that it should be acceptable to be left to certain death in a situation where there is a possible treatment, says the former social security lawyer.
2023-12-18 21:12:04
#sorted
