Oncology (Medical)
Considered to be the second leading cause of death worldwide, right after cardiovascular disease, cancer continues to “claim” lives in Portugal, with a growing trend. In a scenario marked by pandemic fatigue and the economic consequences of the Ukrainian war, the challenges for Portuguese health professionals are intensifying, as they “are, and well, more demanding” when it comes to reconciling their personal and professional lives, as well as the recognition associated with the so-called “emotional salary.”
Key Points
If, on the one hand, care activity shows a “clear” recovery after the critical moment of the pandemic, the pressure on clinicians is also growing, which “is creating problems in response capacity.” This is guaranteed by Jlio Oliveira, president of the Porto Francisco Gentil Portuguese Institute of Oncology (IPO do Porto), who, on the occasion of World Cancer Day, which took place on the 4th of February, “painted” the scenario of oncology in Portugal.
According to the official, Portugal continues to have “a very large number of oncological diseases in which early diagnosis is not possible,” as is the case with rare cancers, which, in reality, “are not rare at all.” These neoplasms “correspond to more than 20% of all diagnoses and are outside the screening spectrum.” Without measures to combat precariousness, the costs of innovation, and the deterioration of the National Health Service (SNS), Jlio Oliveira warns that “we are moving towards a system that is financially unsustainable,” which will condition “access to innovation and the best care.”
We have noticed a tendency towards more referrals, particularly in large centres, which makes us constantly under pressure to ensure that patients receive the requisite quality of care.
What is the current scenario of oncology in Portugal, taking the COVID-19 pandemic’s impact on diagnoses into account?
There has already been a clear trend towards a normalisation of activity. There was certainly an impact with the pandemic, especially during 2020—it was clearly noticed during those months when primary health care was particularly affected and with much less activity. There were far fewer referrals of new patients to the IPO, but there has already been a resumption of activity.
In 2022, the IPO had its second year with the highest number of patients admitted. Only in 2016 did the IPO have a higher number. There were about 11,500 new patients. From the point of view of surgical activity, there has not been a great oscillation in recent years the IPO have a higher number. There were about 11,500 new patients. From the point of view of surgical activity, there has not been a great oscillation in recent years. The IPO in Porto has twice as many cancer patients as the second-largest centre in the country in terms of the number of cancer surgeries. It is clearly the institution that treats the most cancer patients in the country. Even at the European level, it is a very significant number, and it is one of the largest centres in the diagnosis and treatment of cancer.
In line with the worldwide trend, cancer is the second leading cause of death, after cardiovascular disease, in Portugal.
For example, in the area of medical oncology, 2022 broke all records in terms of consultations—there were almost 60 thousand, putting great pressure on health professionals because human resources are not elastic, on the contrary. Given the absenteeism related to parenthood, fortunately for the country, but with great pressure on health services, there is a greater number of consultations per doctor, and this is creating problems in the capacity to respond, which are being overcome with great effort by health professionals—not only during the most critical period of the pandemic, when there was a need to reinvent the circuit, but also now. We are noticing, mainly in large centres, that there is a trend towards an increase in referrals, which leads us to live with this permanent pressure to guarantee patient care with the necessary quality.
Recently, data were published on the position of Portugal in relation to other European countries in the area of cancer, treatment, access, and screening. In line with the worldwide trend, cancer is the second cause of death after cardiovascular disease. Portugal has a high mortality rate in relation to colorectal cancer, which turns out to be the main cause of death. Therefore, it is one of the areas where population-based screening exists and has been identified as one of the parameters where improvement is needed.
Lung cancer is the one that takes the most years of life away from society, and, despite affecting a slightly older population, counting all the years of life that are taken away, it is the most impactful cancer.
The Minister of Health announced the expansion of cancer screenings, with pilot projects for lung, prostate, and stomach cancer. What role do these mechanisms play, and what is their importance?
It is always important to understand the starting point, to understand where we are, what evolution has taken place, and where there is room for improvement. Clearly, this is one of the areas that has evolved positively. There was a recovery in relation to the pandemic period, and now there are new challenges, which are the new screenings that have been announced, which will imply a very careful analysis. Before moving on to population-based screening, it will be important to develop some pilot projects so that we can understand the impact they have on the populations that are covered before we generalise the population—not only the economic evaluation but also the evaluation of the effectiveness of the screenings.
Portugal, and mainly the north of the country, is one of the regions in the world where the incidence of gastric cancer is higher, so it makes perfect sense that there is investment in this area. We have professionals from IPO Porto who are at the forefront of planning digestive cancer screening and, now, gastric cancer. but also in other areas, such as lung and prostate cancer. Once again, it will be very important to test them with a solid methodology that allows us to obtain the necessary information so that we can then scale them across the country.
These areas are identified as being important because they have a high mortality rate, especially with regard to lung cancer. Lung cancer is the one that takes the most years of life away from society, and, despite affecting a slightly older population, counting all the years of life that are taken away, it is the most impactful cancer.
Prevention cannot be centred on the Ministry of Health; it has to involve other ministries. It has to involve education and youth, but it has to be transversal to the whole of society—it cannot be a sectoral thing.
International data point to the fact that we can add breast, prostate, and colon cancers, and even then, they do not reach the number of years of life lost in relation to lung cancer. There is a factor that is clearly associated, which is tobacco. Although there has been a trend towards a reduction in smoking in Portugal in recent years, we continue to have a population that smokes a lot, and in addition to screening, it is necessary to focus on prevention—one of the pillars of the National Strategy to Fight Cancer.
Although tobacco consumption is below average, alcohol and obesity are problems that are above the European Union average. Another important aspect to evaluate in terms of prevention is vaccination against HPV, and, in this regard, Portugal is one of the best examples worldwide, with the generalisation of the vaccine not only to the female population but also to the male population. We’re going to start seeing those effects now.
Cervical cancer screening is one of the tests that, at the moment, is in effect nationwide, with some gaps, since breast cancer screening ends up having greater coverage and acceptance by women of eligible age. But it is a reality that, in the coming years, is expected to change significantly due to the effects of vaccines.
We can only take steps in knowledge, not only academic, but also in knowledge that translates into technology that is available to patients, through the promotion of clinical research. The more time passes, the less opportunity we have. But Portugal still has the opportunity to catch the innovation train.
There is a lot of work to be done in relation to prevention, which does not only involve the Ministry of Health. Prevention cannot be centred on the Ministry of Health; it has to involve other ministries. It has to involve education and youth, but it has to be transversal to the whole of society—it cannot be a sectoral thing, only the responsibility of the health area. Increasingly, the involvement of civil society itself is being discussed at the European level—not only of patients and patients’ relatives, but of society as a whole, for the promotion of health.
With regard to cancer patients, what is being sought is a greater involvement of family members, increased health literacy, and, above all, the fact that they are an ally in the fight against the disease and in the creation of better conditions, as already happens in other countries with the involvement of patient organizations, so that the fight against cancer can be more efficient. For example, creating conditions for clinical research to reach more patients This is one of the areas that is absolutely essential.
Along these lines, and despite the good results of the Porto IPO as a research “hub” and the consortium with i3S, do you consider that Portugal is lagging behind in terms of innovation in terms of cancer treatment?
When we are talking about assistance and treatment, it is increasingly considered that clinical research is part of the continuum of care that is offered to cancer patients and that it is not something that appears if there is time for it. It has to be integrated into the heart and the treatment process. We can only take steps in knowledge, not only academic, but also in knowledge that translates into technology that is available to patients, through the promotion of clinical research. The more time passes, the less opportunity we have. But Portugal still has the opportunity to catch the innovation train.
There are European countries with a size similar to Portugal that are much more robust, with more capacity and structure to capture clinical trials from both the pharmaceutical industry and academia. Portugal must take this step forward by creating conditions that allow doctors in centers, specifically hospitals, to focus on treatment and science itself, while other professionals handle all of the bureaucratic and logistical complexity associated with clinical research.professionals who work as a team with clinicians. It cannot be anaemic growth, as we have seen in recent years.
We continue to have a large number of rare diseases that, together, correspond to more than 20% of all diagnoses and are outside this screening spectrum. It means that we will continue to have, unfortunately, a trend of increasing cases with the ageing of the population.
The cost of innovation is absolutely critical. One of the ways we can reduce the cost of innovation is to have more clinical trials that allow patients to have treatment options in the context of research. Innovation, especially in the area of oncology, corresponds to around 14 of the investment that is being made in the biomedical area because the return for the pharmaceutical industry is very high. From the point of view of budgetary weight, innovation in institutions such as the Porto IPO corresponds to nearly half of the budget received from the state. It is an unsustainable weight with a tendency to grow.
Unfortunately, there are a very large number of oncological diseases for which early diagnosis is not possible. We continue to have a large number of rare diseases that, together, correspond to more than 20% of all diagnoses and are outside this screening spectrum. It means that we will continue to have, unfortunately, a trend of increasing cases with the ageing of the population. With the evolution of technology, innovation, and its costs, we are moving towards a system that is financially unsustainable.
The ecosystem of health and its professionals is increasingly complex, and, with low wages, it is very difficult to retain professionals. I’m not even talking about their retention in the public sector, but their retention in Portugal, especially the new generations.
From the perspective of the Portuguese citizen, who, without the National Health Service (SNS), has the misfortune of suffering from an oncological disease, especially in an advanced context where the cost of the medicine is very significant, not even the health insurances themselves are able to respond fully. Often, what ends up happening is that the state really has to assume this cost, and if there is no robust SNS, all of us as a society will suffer and we will have limited access to innovation and the best care. Fortunately, in Portugal, there is not only hope but also concrete data that, however flawed the system may be, it continues to guarantee accessibility, and the area of cancer is one of the most glaring. We are about 20% below average in terms of costs, but the impact of the drug is higher in percentage terms.
However, the cost of human resources in Portugal is lower compared to other European countries, which is the result of lower wages, which is contributing to the flight of qualified professionals—we are not only talking about doctors, but also nurses, pharmacists, and health technicians specialised in highly differentiated areas, from nuclear medicine to radiotherapy. The ecosystem of health and its professionals is increasingly complex, and, with low wages, it is very difficult to retain professionals. I’m not even talking about their retention in the public sector, but their retention in Portugal, especially the new generations. It has to be corrected soon. Otherwise, we will suffer a lot, and we are training excellent health professionals for other countries with much greater economic power to come and get them.
What initiatives and innovations is the Porto IPO developing?
The Porto IPO has, per year, about 300 patients included in clinical trials. In 2022, we had 450 patients who were included in clinical trials. We had 158 active trials, so we are by far the largest clinical research centre in oncology in the country. We had a recent recertification by the Organization of European Cancer Institutes (OECI), which is the European organisation of cancer centres and is the only entity that is qualified to certify the quality of cancer centers.
In Portugal, there are three centres recognised by the OECI: two are clinical centres, the IPO in Lisbon and Coimbra, and one is a comprehensive center, the IPO in Porto. That is, not only from the care point of view but also from the research, translation, and clinical point of view, it meets the requirements. This recognition is within the scope of a consortium that exists between IPO do Porto and i3S; the two entities together turn out to be the nucleus that most produces science in the field of oncology in Portugal. This recognition is very important, not only for the work that is done by professionals, but also for the strategy that we have consistently developed for [the IPO in Porto] to be a reference and to have as a reference the best practises at the European level.
The Porto IPO has the first phase 1 clinical trials unit in Portugal in oncology. The clinical research unit of the Porto IPO was created in 2006, but in 2019, the phase 1 clinical trials unit was formalized. It is important because [phase 1 trials are] trials in which, for the first time, you are to try a new drug or combination of drugs on humans.
Although there is an expectation of great benefit when patients enter these types of trials, there is also a greater degree of uncertainty regarding the safety and efficacy of drugs.
From a logistical point of view, these are much more demanding processes—they require more consultations, much tighter safety monitoring, and imply that there are dedicated teams so that the patient is as safe as possible. Although there is an expectation of great benefit when patients enter these types of trials, there is also a greater degree of uncertainty regarding the safety and efficacy of drugs. This makes it possible to anticipate by several years the access of several patients to medication technologies that, otherwise, they would not have access to.
We also created the first precision medicine programme in oncology, which is closely linked with the early phase clinical trials unit. More and more clinical trials are guided by the molecular characteristics of the tumor, the so-called biomarkers, and for that it is necessary to create the “identity card” of the tumor. Fortunately, technology has evolved very quickly and with a very significant reduction in costs. At this time, the possibility for patients to carry out next-generation sequencing with cancer-related gene analysis panels is becoming more accessible, which allows us to better understand the biology of cancer and identify potential targets for treatment. This is especially important for patients who have already exhausted their treatment options.
Rare oncological diseases, taken as a whole, are not rare at all. They correspond to more than 20% of oncological diseases.
The Porto IPO has this programme set up along these lines for adults and children, in the sense of seeking to identify potential treatments in an experimental context that may be useful for the patient, whether in Portugal or abroad, and, therefore, we have an already established network with other centres.
We were also the first centre nationwide to have CAR T-cell technology, which is an absolutely revolutionary type of treatment for patients with certain types of malignant blood diseases, namely lymphomas. It was in 2019 that we started the first treatment, and since then, more than 50 patients have had access to this technology.
In the case of rare oncological diseases, such as sarcomas, there is not much literature. Is this related to financing factors? What steps is the Porto IPO taking in this direction?
Rare oncological diseases, taken as a whole, are not rare at all. They correspond to more than 20% of oncological diseases. Porto IPO is involved in several basic, translational, and clinical research projects that also involve rare diseases. For example, in 2019, we started participating in a pan-European project, promoted by the European Organization for Research and Treatment of Cancer (EORTC), and we were pioneers in Portugal. However, other Portuguese centres also joined this project, called SPECTA, which consists of characterising the tumor.
It consists of three subprojects: one more related to tumors, which are expected to be sensitive to immunotherapy; another focused on adolescents and young adults; and another centred on rare tumors, where we include many patients with sarcomas and other rare pathologies. This was, in a way, the anchor of our precision medicine program. We learned a lot from this participation, and we were the centre that included the most patients in this project at the European level, where we have around 300 patients. It is an academic project, financed with money from the European Community and with co-financing from the pharmaceutical industry.
There needs to be a policy that facilitates the hiring of qualified health professionals, is agile in hiring, and allows hospitals to manage to have support teams for clinicians so that we can be more efficient in capturing clinical trials and including the sick.
These are just a few examples of the IPO’s commitment to not only advance knowledge, but also to research that allows not only for a better understanding of the disease, but also for more treatment options.Of course, there is always the feeling that we need more, but in order to have more clinical research, we need to have better conditions in the centres so that doctors can be freed to focus on science and care.
For this, there needs to be a policy that facilitates the hiring of qualified health professionals, is agile in hiring, and allows hospitals to have teams to support clinicians so that we can be more efficient in capturing clinical trials. and to include patients so that research becomes part of current care practice.It is essential in areas where we know little or have fewer cases that those cases that we do have can be fully scrutinised for the outcome of treatments and their consequences, so that we can evolve more quickly.
Are we very far from a reality in which cancer is not seen as a “bogeyman” and is curable?
In some areas, cancer can be cured, and fortunately, we have an increasing share of people who have suffered from an oncological disease who are considered survivors and who have a higher expectation of survival than was the reality a few years ago.
In order to have a greater impact after the diagnosis of the oncological disease, we have to diagnose it at earlier stages; hence, screening, increased awareness, and increased literacy are absolutely essential. Fortunately, many patients with more advanced disease, whether locally or metastatically, now have treatment options that allow advanced oncological disease to be transformed into a chronic disease.
We cannot yet speak in general terms about a cancer cure because when we talk about cancer, we are talking about many diseases with very different biological characteristics, and treatment will vary enormously depending on these biological characteristics, as will the prognosis.
We cannot treat everything everywhere, so, especially in rarer diseases or more complex technologies, there has to be some centralization so that we can offer patients the experience of such care. But then there must be capillarity.
Survivors are increasingly a concern, not only in the paediatric population, where we have greater expectations that they will survive and be cured. We have more and more survivors of oncological disease, and it is necessary to adapt health care with articulation between oncological centres and primary health care for the follow-up of these patients. Centers like the IPO must concentrate on what is more complex, on the most differentiated treatment.
We cannot treat everything everywhere, so, especially in rarer diseases or more complex technologies, there has to be some centralization so that we can offer patients the experience of such care. But then there must be capillarity. There is an absolute need to work in a much more rational and focused way in the organisation of referral networks for cancer patients, as well as better plan and organise care, in order to guarantee that the patient, regardless of where he lives, has access to the best standards of diagnosis and treatment of oncological disease.
In the North, we have a clear perception that it might be easier to improve what exists and create a more robust network. In the rest of the country, it may be more difficult, but it has to be a national plan. There are no technological limitations to this, on the contrary. With the increasing computerization of hospitals and primary health care, there is no reason for there not to be greater sharing for the benefit of the patient.
How do you face the fact that more and more young people are being diagnosed with cancer? What is behind this phenomenon?
Some tumours are experiencing an increase in incidence, yes. According to data that was published in the National Oncological Registry (RON), breast and pancreas cancer have had an increase in incidence, but there has been a reduction in colorectal and lung cancer.
For thousands of years, the human species evolved in a context in which, in order to survive, it was necessary to walk much more, to run more, and to have much more physical activity. There was no Internet, there were no automobiles, there was no sedentary work, no food abundance, and, in the last few decades, there has been a radical transformation. A drastic reduction in physical activity and food hygiene is certainly having an impact on the increased risk of cancer. We have obesity, which is associated with some types of cancer, but also exposure to toxic agents, such as air pollution.
The fact is that this more macro vision of the way of life in these three, four, and five decades is having consequences not only on the incidence of oncological disease but also on cardiovascular disease.
Health professionals can only care if they are well. In recent years, with the pressure of the pandemic and the pressure created by the greater demand for care, there have been repercussions on the physical and mental health of health professionals. It is becoming increasingly important to have this broad perspective, to consider both those who require care and those who provide care.
Do you think that oncologists “take” their patients’ stories home? How is it possible to deal with the emotional “weight” of the profession?
This is a condition inherent to the type of activity carried out by professionals who deal with serious illnesses, which is highly impactful and, inevitably, disturbing for the professionals themselves, who are also human beings. During their training,they receive tools to be able to provide health care that is not just about prescribing but also about being able to provide the necessary support to patients and their families.
Unfortunately, the care pressure that physicians are currently subject to due to the existing overload makes this condition almost incompatible with the need to make time available because, no matter how technical it may be, there are certain things that cannot be done without time. It is desirable that professionals have more time to be able to respond not only to the demands and needs of patients but also to their own needs.
Health professionals can only care if they are well. In recent years, with the pressure of the pandemic and the pressure created by the greater demand for care, there have been repercussions on the physical and mental health of health professionals. It is increasingly necessary to have this overall view, to look at those who need care but also at those who care, so that they can regenerate and face the dramas of everyday life with the greatest possible competence but also with humanity.
The big problem is that we have a short memory as a society, and when the acute problem passes, we quickly forget how important certain professions were—not only health professionals but those who kept the country running.
In your view, what remains to be done to value these professionals and their careers? How would it be possible to overcome the lack of professionals in this area?
It’s a very complex equation. Trying to be very brief, there are issues related to salary, which are important, but there is also the “emotional salary” and the recognition of dedication, effort, and opportunities in terms of career progression, professional achievement, and reconciling professional and personal life. This is becoming increasingly necessary, and younger generations of health professionals are becoming more demanding in terms of conciliation.
After a pandemic like the one we are experiencing, this feeling has become even more acute. Once again, health professionals are, first and foremost, people, and they are absolutely essential for society to survive as a society, as we have seen. The big problem is that we have a short memory as a society, and, when the acute problem passes, we quickly forget how important certain professions were—not only health professionals but also those who kept the country running when the overwhelming majority of the population was closed indoors.
There needs to be a certain change in the culture and appreciation of those professions that are, unfortunately, most of them very poorly paid. Society as a whole has to rethink how it values those who are really essential for its functioning.
What are the main priorities in this area of health?
It referred to the National Strategy for the Fight against Cancer, which identifies the pillars of what intervention in the area of oncology should be: prevention, early detection, diagnosis, treatment, and follow-up of survivors. These are areas that are absolutely essential. Now, it is necessary to put it into practice, and there must be political traction in the structures of the state. but, above all, traction with society.
This only makes sense if there is real citizen involvement and a greater commitment to health literacy, so that each individual tries not to get sick and has a lifestyle that is preventive of the disease, which promotes their well-being. As a result, the Ministry of Health is becoming less and less of a “Ministry of Disease” and more of a “Ministry of Health.” There, we will win as a society in terms of cost reduction because we are talking about our taxes and, above all, about health outcomes with more impact on prevention and faster recovery for citizens who are unlucky enough to suffer from an illness.
