Chris Booth, oncologist: “The war narrative around cancer means that some patients receive treatments they would not otherwise have wanted” | Health

In 2023, Chris Booth – the Director of the Division of Cancer Treatment and Epidemiology at Queen’s Cancer Research Institute (QCRI) – and other oncologists around the world launched the Common Sense Oncology initiative. They wanted to spark a public debate about a worrying development in oncology. Although many cancer treatments have saved patients’ lives or extended their lives by improving their quality of life, there are a growing number of treatments that offer little benefit at a very high cost and a lot of toxicity, keeping patients in hospital for long periods at the end of their life, when every hour is even more precious.

In his studies, Booth, 49, warns that many of the current treatments do not meet the usual thresholds for assessing the usefulness of drugs, such as one year of quality of life for $50,000 or even $100,000. He also points out that drugs are evaluated based on criteria such as the length of time they take to stop tumor growth (progression-free survival), which in many cases has nothing to do with whether the patient survived more months or years. Between 2003 and 2023, 48% of the drugs approved by the FDA to treat cancer – which serves as a reference for other regulators around the world – were approved based on progression-free survival, not overall survival.

In a recent article presented at the annual meeting of the American Society of Clinical Oncology, the Common Sense Oncology initiative recalled that clinical trials of cancer drugs – which used to be supported more by government money and the initiative of researchers – have been 85% funded by the pharmaceutical industry over the past 30 years. In a video call, Booth explained that “oncologists have known this reality for a long time and a large majority believe that solutions must be sought,” but they needed a space to talk openly about these problems and improve the situation of their patients and their families.

Ask. 85 percent of the studies are funded by industry. However, many oncologists and government representatives responsible for science funding believe that there is no other option because only the pharmaceutical companies have the necessary funds.

Answer. I agree and disagree. It is important to recognize that many of our excellent treatments and some of the best clinical trials have been done in collaboration with the pharmaceutical industry. I do not want to give the impression that we are anti-industry. The problem is that the pendulum has swung so far in one direction that the entire cancer research ecosystem is now largely funded by the pharmaceutical industry, which means that trials that are designed, conducted and funded must be consistent with the core mandate of pharmaceutical companies, which is to generate profits for shareholders. Sometimes the mandate to make things better for patients and the mandate of industry align, but not always.

We need to create a place and alternative sources of funding. We need a renewal of investment in clinical cancer research by government-funded institutions. I also think that the health system has a role to play in funding clinical trials that address questions that are important to patients but perhaps less interesting to industry. For example, there is currently a lot of interest in de-escalating treatments, reducing the intensity of treatments and reducing side effects for patients. We have examples of this. The results remain the same and the health system saves money. These trials will not be of interest to the pharmaceutical industry, but they will be of great interest to patients, families and the health system.

Q It is understandable why the industry would seek drug approval based on progression-free survival rather than overall survival, but why should regulators accept this?

A. Regulators have a very difficult job as they try to balance a number of competing priorities. There is a constant tension between getting treatments approved quickly so they reach patients as quickly as possible and ensuring that they are good treatments.

Perhaps we could get an initial regulatory approval based on some kind of surrogate endpoint (measurements to see if the drug works, even if it has not yet been shown to prolong life), so that patients have access to the drug while we wait for long-term data to confirm the overall survival benefit and clarify whether the drug gets full regulatory approval.

I also think that in our field in general, including regulators, we were perhaps over-optimistic 15 years ago when they started using progression-free survival in phase 3 trials (the big trials just before a drug is finally approved). It was never invented for phase 3 trials. It was invented to guide early drug discovery in phase 1 and phase 2 trials, to give a signal of activity and to let researchers and the pharmaceutical industry know whether this was worth trying in a phase 3 setting. The thought was that these references would be used to predict that the patient would live longer and better and that we would get answers faster.

Ten years later, we learned that maybe that wasn’t as meaningful as we thought. We saw that progression-free survival is a good surrogate for overall survival in a few cases, but in the vast majority of cases, it doesn’t predict whether someone is going to live longer or better. And that’s really important, because these treatments aren’t benign. The other reason we started using progression-free survival is because we thought we’d get answers faster. And again, ten years later, we learned that it saves some time, but estimates suggest it’s probably less time saved than we thought, probably less than a year before we get the final answer.

Considering that at least half of clinical trials are designed to slow the growth of the tumor seen on a CT scan, i.e. to achieve progression-free survival, rather than to help people live longer, we should think about whether we are comfortable with a cancer research ecosystem and this model of patient care. The answers are complicated, but I think it’s worth at least having the conversation, being humble, and acknowledging that some of our treatments may not be as helpful as we thought.

Q They have also published data suggesting that more expensive therapies are less beneficial than cheaper ones. This inverse correlation is curious.

A. It is a completely broken model. Last month we published an article in Lancet Oncology It described health care spending on cancer drugs across the province of Ontario. Ontario is Canada’s largest province with a population of 15 million people and a national health care system. We found that spending on cancer drugs is increasing at an alarming rate. It’s increasing by 15% annually, while other health care spending is increasing by 5% annually. And about half of our total cancer spending is on cancer drugs.

The second economic point, which you have already raised, is the fact that in cancer there is no relationship between the effectiveness of a drug and its price. If anything, the drugs with the least benefit are the most expensive.

The third economic insight is that the entire global pharmaceutical sector is turning to cancer. We looked at the 10 largest pharmaceutical companies in the world over the last decade and found that their share of revenue from the sale of cancer drugs has increased relative to that of all other diseases.

In principle, this could be good news for oncologists and cancer patients, but firstly, there are other public health problems that require investment, innovation and new treatments. And secondly, more money is not always good. The whole system is addicted to the money made from selling cancer drugs. There is enormous financial pressure that, whether we realize it or not, shapes much of the cancer system. This is something we should at least acknowledge and discuss.

Q You also mention that there comes a point in the course of the disease when the investment in treatments would make more sense if it was devoted to palliative care. But I suppose many people would see this as giving up or abandoning a loved one.

A. What you mention is the war narrative that emerged from Richard Nixon’s war on cancer in the 1970s. It creates problems with the public perception of oncology, which is always a struggle and a battle. This perception, which pushes to continue the fight, leads to decisions, particularly at the end of life, that can lead to some patients receiving treatments they would not otherwise have wanted.

Neither I nor the Common Sense Oncology Initiative believe that we have an answer for every single patient as to what treatment is right for them. However, we do believe that there is room for consideration of the benefits of some of these treatments, particularly when they are relatively small treatments and they have a lot of side effects, particularly at the end of life. I think we can do a better job of giving patients the information they need to make these decisions, which are obviously very difficult.

Q In addition, these treatments are extremely expensive and sometimes have little or no effect on prolonging life.

A. In the United States, a cancer diagnosis is one of the leading causes of bankruptcy. The situation is much worse in low- and middle-income countries, where the cost of cancer treatment is entirely paid for by the patient and their family. It is tragic enough to be diagnosed with cancer and find the disease incurable without also putting your family in debt for generations only to receive a very toxic treatment with little benefit.

In systems with public health care, some of the financial toxicity is absorbed, but there is also the paradox of the last six months of life. In systems like the Spanish or Canadian, after previous treatments have been completed, a treatment may be available that costs the health system $100,000 or $200,000 and may or may not help the patient live a few weeks longer. It has side effects and requires the patient to spend one day a week in the chemotherapy unit. The paradox is that we have a system that provides this part of care fairly easily, but it is almost impossible for the system to provide enough psychosocial, mental health or nursing support to that patient, who may be feeling lonely, vulnerable or frightened, to enable them to live with dignity and comfort at home at the end of their life.

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