The drug gave her a new life. Ragnhild Elisabeth Hoel, 49, and all chronic migraine patients now have to take a break from medication that has been shown to be very effective for them. The reason: the drug is expensive, according to the health authorities.
Ragnhild Elisabeth Hoel, 49, of Varhaug, Jæren, wouldn’t return to the life she lived until she got her new migraine medication.
It doesn’t work, says the organist at Nerbo, I can’t stand it.
Migraine patients across the country are despondent, Norwegian neurologists are concerned and many political parties are reacting to health authorities who are cracking down on use of the drug if it has changed the lives of many chronic migraine patients.
Currently, health authorities have decided that patients should stop treatment for three months after 18 months of treatment.
Treatment is expensive and we must make sure the drug has enough benefit, NMAS chief medical officer Ingrid Ase tells VG.
As I was born again
In 2019, a new medication for migraines called CGRP inhibitors came out. In the past, migraine patients in the country were given epilepsy and blood pressure medications and antidepressants to reduce seizures. Many people have tried different medicines but to no avail. Today, at least 605,000 Norwegians suffer from migraines.
So, there was a hallelujah mood among patients and professionals when a new migraine drug came on the market and became available with a blue prescription in 2019.
For migraine patient Hoel from Jæren, it was like a button closure.
The headache disappeared from day to day. After 49 years of migraines, Hall says, it was as if I woke up.
She works as an organist, cultural school teacher, and choral conductor.
I always forced myself to work, but I didn’t do much else.
When you come home from work, you often lie down in a dark room to sleep.
“Fortunately, I have a flexible job so I can take a break during the day and instead of working a bit in the evening again,” she says.
She thinks migraines are one reason her family was never formed.
– I probably organized my life too much around illness.
She lived her whole life with weekly migraine attacks.
My neurologist thinks I’ve had it since I was born. I was diagnosed before I was three years old. There probably aren’t many three-year-olds who are diagnosed early. My father is a doctor and consulted with a colleague. Since he and my grandfather had migraines, he recognized the symptoms.
She says she vomited several times a week and it was very light.
– There was no medicine at the time, but they gave me a little pink pill with valium in the hope that I would sleep from an epileptic fit. I think I mostly vomited the pill again.
The seizures usually happen later in the day, on the way home from school. Then he was just lying in a dark room.
I grew a lot growing up, says Ragnhild.
This pattern continues through.
She describes episodes in four phases and over several days. At first she was feeling restless and irritable, the words sloppy and yawning a lot. Then there may be visual disturbances and headache, before the pain turns into a kind of feeling of exhaustion.
– Create stratification
The president of the Norwegian Neurological Society, Jana Middelvart Hof, described medicine as a small revolution when it came in 2019.
Now she reacts strongly to the fact that patients have to take a forced break.
Norwegian neurologists are very concerned about tightening regulations and believe this will bypass patients, often people who have struggled for years before getting something to help them, says Middelvart Hoff.
She fears many will suffer a real relapse and be held back by migraines.
I have little faith in a strict set of rules that transcend everyone. Estimation should be allowed. In addition, I am concerned that this may also lead to a further stratification of the Norwegian healthcare system. Patients who can, say they will pay for the drug themselves, to avoid staying without it. But what about those who can’t?
If you have to pay for the drug yourself, it will cost 5-6000 kroner for a spray dose per month. What health authorities pay for each dose is exempt from the public.
At least 605,000 Norwegians over the age of 18 have active migraines, according to the National Headache Competency Service and figures from HUNT4 scanning.
They make up 11 percent of the population. Women are affected much more than men, 15.3 percent versus 5.7 percent of Norwegian men. About 100,000 of these suffer from chronic migraines.
Today, only patients with chronic migraines receive these drugs with a blue prescription. This means that you must have had at least eight days of migraines and headaches for more than 15 days for longer than three months to get the medication, and you must also have tried several other types of medication first.
Since the drug appeared by prescription in 2019, about 10,000 patients out of 100,000 with chronic migraines have been given benefits for at least one CGRP inhibitor. This corresponds to approximately total reimbursement expenses. 733 million crowns before discount, according to Norwegian Medicines Agency.
One in ten chronic migraine sufferers get CGRP inhibitors, not so much. Especially when we know how few treatment options are available. There are more people who should be getting these medications, says senior physician Anne Heig Amodt in the Department of Neurology at Oslo University Hospital (OUS) to VG.
All over the world, it is a migraine The second most important reason To disability, the main cause of disability among young women. Migraines cost the state 1.1 billion in sickness benefits, job-release benefits, and disability benefits, each year, according to a report from Oslo EconomyC.S.
Migraine is on the World Health Organization’s top ten list of diseases with the highest disability. However, it’s very difficult to get good enough recognition of how wide the disease burden is for migraine sufferers, Aamodt says.
Aamodt believes that the social and economic costs with such a high degree of sick leave and low work efficiency should be considered in relation to the price of medicines.
The Secretary-General of the Headache Society of Norway, Leyla Praterod Matessen, believes that the severity of migraines is not sufficiently known.
– They now want to cut the offer of the drug indicates that the health authorities are not taking the disease seriously, says Bratterode and tells of desperate members.
Incomprehensible to politicians
Politicians are also angry at the tightening of drug use. Rødt, MDG, SV and Frp have all sent questions to the Minister of Health and Welfare Services Ingvild Kjerkol.
To VG, Chief Medical Officer Ingrid As at the Norwegian Medicines Agency explains that the purpose of the treatment break is to check whether patients still suffer from severe chronic migraines that they have the appropriate medication.
The Norwegian Medicines Agency and the Minister state that migraine is an illness that can change over time, and it is common practice to recommend a period of therapeutic rest for all preventive migraine medications.
Kjerkol asserts that “if special and weighty individual medical evaluations require it, there is scope for a treatment break to be terminated early” by a treating neurologist.
But politicians in the European Parliament are not happy with the minister’s answer. Therefore, today the SV and MDG put forward a motion in the European Parliament calling for the decision to tighten CGRP inhibitors on migraine drugs to be rescinded.
We want the individual medical professional treating the patient to decide when it is appropriate to attempt a treatment break, says Cathy Lai, Buskerud’s parliamentary representative on the VG Family and Culture Committee.
She believes it is unreasonable and reprehensible to force people who have finally received a drug that works to take breaks in treatment.
– It can lead to great suffering and throw them back into disability.
Bård Hoksrud (Frp), deputy chair of Parliament’s Health and Welfare Committee, promises that Frp will support the request.
We fear that people with severe migraines will have to isolate themselves in dark rooms in an inferno of pain, he tells VG.
spitting bag in the bag
Ragnhild Elizabeth Howell was 40 years old when she first went to a neurologist and was given medication for her migraines.
– I was so used to the fits and headaches that I thought it was just something I had to live with—something I had to grapple with.
Hall kept away from travel and stressful situations that she feared could trigger migraine attacks.
– If I have traveled, there are many bags of vomit in my suitcase. She says the illness probably limited me too much socially.
In the past year, her migraines worsened and the attacks recurred, and she was diagnosed with chronic migraine. In January, she took her first injection of a CGRP inhibitor.
– I woke up the next day and didn’t understand a thing. My head was completely clear, I felt completely relaxed and immediately started cleaning.
Describes a new everyday life. Without grumbling, discomfort and headache, but with a lot of energy. When you come home from work, you paint houses and go for a walk. There is an end to the pulled curtains and a bed that is always left untidy.
Now I don’t understand how you endured all these years.
– I will not go back to my old life.
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