Despite the recent advancements in biomedical technology and treatment therapies, cancer remains one of the leading causes of death world-wide. Patient organisations such as Digestive Cancers Europe want to change that by giving the patients themselves a louder voice in the fight against cancer. BioStock reached out to the Executive Director of the Digestive Cancers Europe, Stefan Gijssels, to ask him about the organisation’s mission and how early-stage products like IndiTreat from 2cureX can contribute to fulfilling that mission.

Digestive Cancers Europe (DiCE) is a non-profit patient organisation focused on representing digestive cancer patients around Europe. By bringing their stories into the public sphere, the organisation hopes to increase awareness about digestive cancers (stomach, colorectal, pancreatic, and rare cancers), and therefore start a conversation on how to make improvements in early detection and create more reliable diagnostic tools.

The risk of overtreatment in cancer patients

While great advances have been made in early detection of some cancers, one of the challenges still facing health care professionals and cancer patients is the risk of “overtreatment.” Patients with early stage cancers are often met with aggressive treatments that generally target more advanced cancers.

Too often patients get misdiagnosed and, as a consequence, receive treatments that do not work, or they have to wait months before getting proper treatment. This comes at a burden not only to the patients’ wellbeing, but also to the financial reservoirs of every entity involved (patients, families, hospitals, governments etc.).

»It is absolutely critical to be able to identify which treatment will work on which patient, and to do that early enough, even before standard treatments are started. […] It is a shame to subject patients to chemotherapy when a simple test could have determined before whether other treatments would work better.« – Stefan Gijssels, Executive Director of DiCE

IndiTreat: tailoring treatments to the individual

The biotech company 2cureX has created a product aimed at avoiding such situations and improving the outlook for cancer patients. IndiTreat is a clinical test designed to match the best available cancer treatment with each individual patient. The test relies on taking a small tumour biopsy from a patient and creating micro tumours that are then paired with every form of treatment available on the market and in clinical trials. By assessing which specific treatment that most effectively reduces the size of the microtumour, the test could provide crucial help to oncologists and clinicians in their treatment strategy decisions.

IndiTreat is currently undergoing validations in multi-national colorectal cancer clinical trials and is expected to pre-launch in hospitals and clinics in Europe by the second half of this year. If approved, IndiTreat has the potential to help thousands of patients who typically receive sub-optimal treatment.

BioStock contacted Stefan Gijssels for an in-depth conversation about the patient organisation’s role in helping digestive cancer patients, and how collaborations with companies like 2cureX can benefit the patients.

Stefan, thank you for joining us for this exclusive interview. Could you begin by telling us more about DiCE and what its main goals are as a patient organisation?

Stefan Gijssels, Executive Director of DiCE

– We are the European umbrella organisation of patients with digestive cancers. Every year, more than 800,000 patients in Europe get a digestive cancer diagnosis, and 500,000 people die from it. It’s a huge challenge. We represent 40 organisations in 30 countries. Our core objective is to make sure that citizens do not become patients in the first place, and when they are confronted with cancer, that they are diagnosed as soon as possible so that the best possible treatment can start. Overall survival and quality of life are the essential goals.

How far would you say DiCE has come in achieving those goals, and are you optimistic about the future for digestive cancer patients?

– We have the ambitious aspiration to save the lives of 250,000 patients additionally every year by 2028. That’s a lot of lives saved. But then this can easily be achieved if all countries had for instance colorectal cancer screening programmes. Good screening can by itself already save hundreds of thousands of lives and save billions of euro. The second action is the application of best practices. So even without any further innovation, more than an extra 120,000 lives could be saved annually if best practices were applied everywhere. That’s why we have to keep putting pressure on the political and medical system to do what is needed: to help patients and to spend tax-payers’ money more wisely.

»The biggest need for patients is to get access to the best possible technology, and that starts with the right diagnosis. Especially in digestive cancers – the time between first symptoms and actual diagnosis can be very long.«

Why, in your opinion, is it so important to give voice to patients so that they can tell their stories to the rest of us?

– We’re all patients at one stage in our lives. Nobody likes other people to make decisions about our life without giving us any choice. We have to be part of the process, sharing our insights, our ideas, telling about the real issues that patients are confronted with. I find it still amazing that products are developed without any patient insight, or that health policies are designed without patient insight. Do you know of any food company or computer company that would design products without asking the opinions of the end-user? In healthcare, that is still all too common.

As you listen to patients, what do you feel is their biggest need in terms of care?

– The biggest need for patients is to get access to the best possible technology, and that starts with the right diagnosis. Especially in digestive cancers – the time between first symptoms and actual diagnosis can be very long. And then the choice between the type of cancer and the choice of the best possible treatment may also prove to be difficult.

Besides giving patients a voice, in what other ways does DiCE help digestive cancer patients?

– We want to help patients in their day-to-day issues and problems. We get practical questions such as, “how to deal with my bank? what about nutrition? how do I transition my way back to work? how can I get affordable insurance now that I have cancer?” etc. Patients are confronted with very practical or social problems even after they have been declared cancer-free. We also plan to have a better digital connection among all patients, so that the peer-to-peer exchange can improve, allowing us at the same time to monitor aggregated data from all patients.

»Patients should get the best possible treatment, and any test that will offer the best possible match between the type of disease and the best medication should be standard practice.«

We mention overtreatment as a concern for cancer patients in general. Do patients you represent worry about overtreatment? Do you feel that DiCE can and should play a big role in increasing awareness about overtreatment and possible solutions for it?

– The big issue is to have the best possible treatment in the first place. That is a big problem. Patients should always have the choice. They need to be informed about treatment options. They need to know about alternatives. That is why we also plead to get patients treated in the best reference centres, and not in small or non-specialised hospitals. Only the biggest hospitals have the best technology and treatment.

Why does DiCE focus specifically on digestive cancers, and is DiCE involved in any ongoing digestive cancer research, maybe through active funding or through charity or fundraising initiatives?

– Yes, in some countries, DiCE members support research projects. At European level, we are also working on some research projects to represent the patient voice. But there is a significant under-funding of research into all digestive cancers, when compared to other types of cancer. We are also increasingly involved in representing the  voice of patients in pharmaceutical drug development programmes. The earlier the pharma companies know what patients want, the more effective the drugs will be.

There are several companies racing to find new treatments for cancer, but do you feel that more companies should focus on producing better prognostic tools and early detection technology?

– Both are of course needed. For all types of cancer, the number of available drugs has increased significantly over the past decades, and most of these highly efficacious treatments are targeted at very limited patient populations. So, it is absolutely critical to be able to identify which treatment will work on which patient, and to do that early enough, even before standard treatments are started. The problem is that many of these drugs are only used in second or third line, with standard chemotherapy fails. It is a shame to subject patients to chemotherapy when a simple test could have determined before whether other treatments would work better.

Are you familiar with the IndiTreat test and if so, what do you think that this kind of technology that supports oncologists in their treatment decision-making will mean for cancer patients?

– We welcome this kind of new development. Patients should get the best possible treatment, and any test that will offer the best possible match between the type of disease and the best medication should be standard practice. I don’t see any rational reason not to use it.

»I think the biggest challenge [for biotech companies] will be to get traction, to make sure that the technology they have developed really is understood and wanted by all the oncologists and hospitals and reimbursement authorities in the countries.«

Overall, digestive cancer rates have dropped over the last few decades, but recent studies have shown an increase in colorectal cancer among young people (under the age of 50) in both the US and in Europe. How concerned are patient organisations like DiCE about this, and do you have any suggestions on how to tackle this problem?

– The big issue is prevention. In the US no less than 40% of the population is obese, not overweight, but obese. And there is a clear link between obesity and colorectal cancer. We assume that this is the reason why increasingly younger people are being affected by the disease. We are not yet at that stage in Europe. But lifestyle choices are absolutely essential to reduce the risk of getting colorectal cancer: smoking, food habits, physical inactivity, alcohol consumption … all play an important role.

Finally, in your opinion, what are some of the biggest challenges facing biotech companies that want to help reduce the number of cancer-related deaths?

– I think the biggest challenge will be to get traction, to make sure that the technology they have developed really is understood and wanted by all the oncologists and hospitals and reimbursement authorities in the countries. I think it’s fascinating on the one hand, because everybody will welcome new technology. On the other hand, if everybody wants it at the same time, I’m sure it will result in capacity and logistical problems. But that is luckily not my problem. We can only hope these types of problems arise, because it will show that the product is successful.

Read more about DiCE and its work here.

The content of BioStock’s news and analyses is independent but the work of BioStock is to a certain degree financed by life science companies. The above article concerns a company from which BioStock has received financing.