The consultation hours of pulmonologist Egbert Smit have changed radically over the past ten years. Previously, Smit, who specializes in lung cancer, always gave bad news. “If you had asked me then whether I thought that someone with metastatic lung cancer could survive five years or more in the future, I would have said: no, that is impossible.” But now there are medicines that allow a certain group to do this. “They offer some patients as much as a 50 percent chance of survival.”
Only: those medicines are expensive. They cost 100 euros per day for five years. This amounts to more than 180,000 euros per treatment. The costs of many new cancer medicines are high. In addition, patients often suffer from unpleasant side effects.
That is why it is important to understand the survival benefit that the medicines offer to cancer patients, says Valery Lemmens, director of the Comprehensive Cancer Center of the Netherlands. An analysis by this IKNL shows that cancer patients have achieved a median survival gain of six weeks since 2012. The median is the middle point in a series of data, which in this case means that just as many people shorter than six weeks survived longer than ten years ago. Before 2012, cancer patients usually lived for about five months after diagnosis, now that is more than six months.
An outcome “to be sad about,” says Lemmens. For specific cancer types, such as lung cancer and melanoma (birthmark cancer), the prospects have “fortunately improved considerably” in recent years, he says, even in the case of metastases. But: “If we look at the entire population of cancer patients, we see that many people do not benefit from developments in cancer medicine.” Especially for patients with certain tumor types, such as esophageal cancer, and for whom the cancer has already spread when the diagnosis is made, the already low chance of survival has hardly increased.
Pauline Evers of the Dutch Federation of Cancer Patient Organizations (NFK) also emphasizes the difference between cancer types. She makes a comment on the IKNL numerical analysis: “It is based on all cancer patients, including patients who received no treatment at all because there are no resources for that type of cancer or because the chance of success is too small.” They don’t survive any longer now than they did ten years ago.
Ethical discussions
With the numerical analysis, the IKNL wants to encourage social debate, says Chantal Pereira, effective care advisor at that organization. “A few extra weeks, how much is that worth? Which patients do we spend how much money on? These are complicated ethical discussions. But we have to feed them.”
In the Netherlands, approximately 10 billion euros have been spent on cancer medicines over the past ten years. In 2021, more than half of the budget for so-called ‘expensive medicines’ – 1.5 of 2.6 billion euros – was spent on cancer treatment. In 2012 that was still a quarter.
The number of cancer patients is expected to increase sharply in the coming years, mainly because Dutch people are getting older. Combined with the development of new, expensive medicines, this will further increase the costs of cancer treatments. Half of Dutch people will be diagnosed at some point, figures from the IKNL showed last week. In 1990 that was still three to four in ten.
Seriously ill patients usually deserve priority over less ill people, says medical ethicist Jilles Smids of Erasmus MC. In the current healthcare system, cancer patients also receive this priority. But if costs rise so much, the question is whether they can continue to do so. “That is at the expense of care for others, mental health care for example, or youth care. We will have to make painful choices and have a difficult social conversation. Especially because it concerns a disease as prevalent as cancer.”
At the same time, says Smids, the value of living a few weeks longer should not be underestimated. “It doesn’t seem like much, but if you only have a short time left, it is. It can help people say goodbye in a good way.”
This is also what Pauline Evers of the Dutch Federation of Cancer Patient Organizations says. “When you see the figures, many people will say: we spend too much money on this disease. Until they get that disease themselves.”
Unnecessary costs
According to Pereira of the IKNL, you can divide the patients into three groups: some of them live considerably longer due to treatment with new medicines, another part does not benefit from it – and may experience side effects – and another part is not treated at all. . “You actually want to know in advance which patient will respond to a drug and how. Now we treat more patients than just those who benefit from it, which causes unnecessary costs and unnecessary side effects. A patient in the final phase of life should not be unnecessarily ill due to the therapy.”
The latter is particularly important for internist oncologist Sabine Netters. She specializes in palliative care, i.e. care for people with no chance of recovery, and treats cancer patients. “The social debate about this should not only be about the costs, but especially about what you do to patients with such cancer therapy. These are serious treatments that can cause a lot of damage, while you often do not know the outcome. We once took our oath: in doubt abstinence, when in doubt, do nothing. This has now been completely reversed: when in doubt, we often intervene, which sometimes does more harm than good. The side effects can deprive people of the opportunity to say goodbye to life in a good way.”
In those cases, palliative care, aimed at psychosocial support and symptom management, is more useful, according to Netters. “We also have to present that story to the patient. Some value the quality of their life more than its length.”
Survival gain
Precisely because you often cannot predict the outcome, it is better to treat it, says pulmonologist Egbert Smit, affiliated with the Leiden University Medical Center. “We don’t yet have a way to select in advance patients who will benefit from treatment, so we treat everyone. On a large scale, the effect on survival gains may be limited, but in the history of lung cancer we are experiencing an unprecedented improvement. If we become more cautious, we run the risk that patients will not receive treatment even though it could benefit them. I have trouble with that.”
What everyone agrees on is that more research is needed into indicators that predict response to treatment. Patients can then be treated in a more targeted manner, without unnecessarily burdening society with invasive therapy and high costs.
The Dutch Association for Medical Oncology (NVMO) and the Dutch Association of Doctors for Pulmonary Diseases and Tuberculosis (NVALT) already tightened the so-called PASKWIL criteria for prescribing cancer drugs. If medications do not meet these criteria, Dutch oncologists generally do not prescribe them and they are not reimbursed. About This tightening caused a commotion; Patient association NFK called it a “disguised way to control costs”.
The chairman of the NVMO, internist-oncologist Machteld Wymenga, disputes this: “Costs are never decisive in the PASKWIL criteria. It’s about a good balance between effectiveness and side effects.”
In addition to research into targeted treatment, Wymenga also advocates that research by pharmaceutical companies be set up differently. “If a pharmaceutical company tests a product for an annual treatment and it proves effective, it is also used as an annual treatment for patients. But you can also start with six months or three months. And you can also look at dosages: more is not always better.”
Effectiveness
Lemmens of the IKNL also says this: “Shortening a treatment or lowering the dosage does not always have a negative effect on the result, but it is cheaper and more pleasant for the patient.”
There is therefore a responsibility for the pharmaceutical industry, say Wymenga and Lemmens, and for oncologists themselves in follow-up research after a drug has been brought onto the market.
Also read: Oncologist Gabe Sonke wants to get rid of the ease with which expensive cancer drugs are prescribed
Another way to curb costs, says Pereira of the IKNL, is pay for performance. “When a drug comes onto the market, we negotiate the price. After that nothing changes. While the effectiveness of a drug in the real world often turns out to be less than in trials by pharmaceutical companies, because for safety reasons, for example, they usually work with fitter patients. If such a drug indeed turns out to work less well in certain patient groups, you could settle this later. Then at least as a society you pay for what you actually get in return.”
The question should not be whether cancer patients are worth all that money, says Evers of the NFK – “because they are” – but whether the resources are worth so much money. “Pharmaceutical prices must be lowered. Shareholders don’t like to hear that, we noticed in conversations with the industry. But you could also see it as a socially responsible investment and settle for slightly lower returns.”