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– This is dramatic for everyone involved, emphasizes Fredrik Hellem Schjesvold, oncologist and director of the Oslo Myeloma Center. He believes that with full use of all drugs approved in Europe, the life expectancy of patients diagnosed with multiple myeloma (bone marrow cancer) could be extended by an average of three to four years.
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– For many sick Norwegians, this is a matter of life and death. If you have a waiting period for a new medicine Nedit enables many seriously ill patients to live longer, and for the vast majority it improves the quality of life during illness. “When we don’t have the opportunity to offer patients the best treatments we know of, as a physician your hands are tied,” says Fredrik Schjesvold.
He is the country’s foremost expert on multiple myeloma (bone marrow cancer), one of the most common forms of blood cancer. Schjesvold is the director of the Oslo Myeloma Center, a research and treatment center for patients with multiple myeloma.
– As a doctor, it is difficult not to provide the best possible care, which may well result in a better daily life and longer life for a seriously ill patient. For those involved, it is dramatic.
Fredrik Schjesvold, oncologist and director of the Oslo Myeloma Center
Oncologist Fredrik Hellem Schjesvold says that with current treatments, the prognosis for multiple myeloma (bone marrow cancer) in Norway is about seven to eight years. He believes that with full access to all drugs approved in Europe, average life expectancy could be extended by three to four years. This, he stresses, is dramatic for those involved.
Schjesvold stressed that only medicines can cure cancer. At the same time, he stressed that the public health system provides good treatment for multiple myeloma patients.
– The challenge, he says, is that treatments could have been better. Since Norway has nothing left to offer, patients eventually have to go home and wait to die, although a few good years of treatment could be offered if there was political will. Even for those of us who work on this, it’s hard to bear, Schjersvold says.
– Sad Development
Olav Ljøsne lost his wife Nina to multiple myeloma three years ago. She had been living with the diagnosis for several years. Ljøsne has been president of the Blood Cancer Association since 2018.
– We found that patients and relatives had almost given up the fight to get helpful medicines. He said there was something fundamentally wrong with Norway’s new medicine approval process.
– It is a sad development and many patients and relatives finally give up. You can’t stand the struggle to get medicine that could help, says Olav Ljøsne.
– This is a sad development. When the public sector is unable to provide drugs to help, most patients and relatives will do everything they can to save lives.
Olav Ljøsne, President of the Blood Cancer Association
Ljøsne said there has been a revolution in blood cancer medicines over the past 20 years.
– Despite this, many people remain on the outside and look inward, because they know that new drugs may be able to extend life. This means years with children, grandchildren, spouses, family and friends – who are missed out due to the lengthy process and the Norwegian authorities’ focus on keeping the price of new drugs down.
Can be purchased privately
In June, the WAIT report was published, an annual survey to find out how many of the latest treatments and medicines are available to Norwegian patients after they are approved for use in Europe. The report also looked at how long it takes Norwegian patients to get access to important medicines after they have been approved by the European Medicines Agency (EMA).
The report shows that Norway takes longer to approve drugs, while other European countries have faster new drugs on the market, so newer, more modern treatments can be provided more quickly. In Norway, the waiting time was 494 days, an increase of 51 days from 2018 to 2021.
Doctors, patient associations and the pharmaceutical industry are questioning how long seriously ill patients will have to wait for drugs approved for use in Europe to be used by the Norwegian public sector. certainly not They are available to patients in Norway. They can be purchased privately.
– Few people can afford it, Ljøsne emphasizes.
He is supported by oncologist Fredrik Schjesvold and Leif Rune Skymoen, head of the pharmaceutical industry association LMI.
They worry about a growing class gap between those who can afford private health care and ordinary Norwegians, who have to wait long periods for new drugs that could offer better treatments and prognoses.
There are more options
In Norway, the government has set four pharmaceutical policy goals. One of these is the goal of keeping drug prices as low as possible. This goal must be seen in conjunction with the other three goals, namely equal and rapid access to effective medicines, high-quality drug treatments, and the need to promote research and innovation.
– We must speak out when Norwegian patients have to wait what we consider to be too long for new medicines and better treatments for the vast majority of the population. Leif Rune Skymoen, president of the Association of the Pharmaceutical Industry (LMI), says this is because the Norwegian authorities are keeping the prices of modern medicines down.
– Norwegian doctors want to provide the best possible care for their patients. New and innovative medicines and treatments cost money, and the political direction of keeping prices as low as possible becomes an obstacle to using the latest medicines.
That’s what Leif Rune Skymoen, head of pharmaceutical industry trade association LMI, said.
He believes that there are several measures that can ensure that Norwegian patients have access to the latest drugs on the market. Skymoen highlights two possible solutions to reduce waiting times:
Norway is willing to invest in new medicines and adopt alternative models for paying for medicines.
Skymoen asked the Minister of Health and Care to take responsibility and change the political guidance on the lowest possible prices to ensure that the prices of new medicines approved for use in Europe are cost-effective.
— Today’s practice is that drug prices are kept down. He said this means that it takes a long time for new drugs to be introduced.
Before summer arrived, the manager said VG Decision Forum (Editorial content) Intensive work is underway to reduce processing times for new drug approvals. The Decision Forum is the body that decides which new drugs and treatments are approved for use in the Norwegian healthcare system.
– Financial cost-effectiveness must be documented
Today, medicines account for 6% to 7% of the budgets of Norway’s four health regions. This means that when Helse South-East, Helse West, Helse Midt and Helse Nord have to prioritize their budgets, a relatively small proportion is reserved for medicines.
According to LMI’s Skymoen, new drugs will only be used if they can be shown to meet the high bar for economic benefit.
– The remaining 93% of the health budget has no such cost-effectiveness requirements. He said that combined with the authorities’ minimum price policy, this means that medicines that are cost-effective from an overall perspective are still not being introduced.
– It is the patients who really pay the price for long waiting times.
Leif Rune Skymoen, the pharmaceutical industry trade association.
– Leif Rune Skymoen of LMI said: “We have noticed that waiting times for new medicines in Norway are increasing and the new payment model has not yet kicked in. He called for a commitment to extend waiting times for medicines, just as Norwegian hospitals have committed to treatment queues.
Pay for performance
Besides investing more money in the newest and most innovative drugs, another way to reduce wait times is to think differently about how to pay for them.
– Unfortunately, the same medicine will not work the same for all patients with the same disease or diagnosis. Therefore, the pharmaceutical companies that develop the drugs are willing to agree that the Norwegian healthcare system only pays for the effect of the medicine on individual patients, so-called “pay for performance”. In practice, this means that the authorities get what they pay for, while providing available help and modern treatment, the head of LMI explained.
– If Norway adopts alternative payment methods, sick Norwegians will have more opportunities to try the latest and most modern medicines that can both save lives and prolong and improve their quality of life.
Leif Rune Skymoen, the pharmaceutical industry trade association.
Skymoen called on Norwegian authorities to do more to reduce waiting times for new drugs, while he understands that Norway’s healthcare system has to set some priorities. But he sees the adoption of new drugs and treatments as an investment in Norway.
– If Norway wants to provide the latest and most innovative medicines, it will be able to reduce the burden on Norwegian hospitals and influence whether clinical research is increased in Norway. This will again have a positive impact on Norwegian industry and the economy, and of course it is important for patients who really need these medicines, he explained.
– From our perspective, we want to make the pharmaceutical industry a large and important contributor to Norway, precisely because it creates jobs and export revenues.
Leif Rune Skymoen is a member of LMI, the Norwegian pharmaceutical industry association.
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