Recently, we published the Brain Tumour Patients’ Charter of Rights, initiated by the International Brain Tumour Alliance (IBTA), now available in German. But what is the Charter actually supposed to achieve? We spoke with Kathy Oliver, Chair of the International Brain Tumour Alliance (IBTA), and Jochen Kröhne, Managing Director of yeswecan!cer and co-initiator of Gemeinsam gegen Glioblastom. They explained for the importance of brain tumor patients speaking with a united voice, how international cooperation can support this and what they plan to achieve for brain tumor patients in the future.
Dear Kathy, dear Jochen, let‘s start with introducing yourselves to our community and telling them more about the International Brain Tumour Alliance (IBTA) and yeswecan!cer.
Kathy Oliver: My name is Kathy Oliver and I’m chair of the International Brain Tumour Alliance (IBTA). I am not a doctor, a researcher, or a nurse – I used to be a freelance journalist. But in 2004, our 24-year-old son was diagnosed with a brain tumour and I gave up work to concentrate on him and his care needs. In that process and while searching online for information on brain tumours, I connected with a gentleman from Australia who had lost his wife to a brain tumour and had been heavily involved in brain tumour patient advocacy. He and I came up with the idea to establish an international umbrella organization for brain tumour patient groups in different countries. We held a meeting for interested parties at the 2005 World Federation of Neuro-Oncology Societies (WFNOS) in Edinburgh, Scotland and it was at that meeting that the IBTA was born. Our main focus at the IBTA today is advocacy and raising awareness, encouraging the establishment of brain tumour patient organisations in countries where they don’t yet exist, and acting as a bridge between all stakeholders across the brain tumour journey.
Jochen Kröhne: And I’m Jochen Kröhne, I’m also not a doctor. I was working in the media industry when I became a prostate cancer patient myself. Together with a friend of mine, Jörg Hoppe, we founded yeswecan!cer in 2018, which is now Germany’s largest digital self-help group. We still see that cancer patients experience fear, shame, guilt, isolation, social stigma, and poverty. It’s still a taboo topic and we aim to change that by promoting self-help amongst those affected by means of communication and exchange of information. Our most important tool is our YES!APP, allowing cancer patients to connect online quickly and easily.
Kathy Oliver: It’s really interesting, Jochen, because I completely agree with your description of the cancer journey. You know, the isolation, the fear, the stigma. Every kind of cancer is difficult and challenging. For example, a brain tumour – because of its location – affects all aspects of your life. It affects your cognition, your physical and mental abilities and it can also affect your personality. Brain tumours are also a rare cancer. So, on a broader basis, we work closely with other stakeholders in the rare cancer arena, such as Rare Cancers Europe and EURACAN, the European Reference Network for Rare Adult Solid Tumors. We aim to address the specific issues that rare cancers, such as brain cancer, implicate; as well as the challenges that are often not implied in more common form of cancers. To mention just one example, we believe that the methodology for clinical trials in rare cancers should specifically take into account innovative approaches considering that, due to the rarity factor, we don’t have thousands and thousands of people available to join our trials. Innovative approaches to trial design may also involve a greater degree of uncertainty – without compromising patient safety, of course. So, I strongly believe it’s crucial for the rare cancer community in particular to work together and align to address these issues of clinical trial design and the other challenges, like isolation and social stigma, which Jochen just mentioned.
Kathy, now that you’ve already mentioned it: The two organisations you work for operate in different countries – yeswecan!cer mainly in German-speaking countries in Germany, Austria and Switzerland, and IBTA in the UK and many other English-speaking countries. How important is international cooperation? How does it help patients in concrete terms?
Jochen Kröhne: Firstly, I’m very impressed that you launched this international alliance because that is our approach as well. We, of course, started yeswecan!cer in Germany, but the idea was always to expand and grow internationally. So, we really support what you are doing, and we agree that it’s important for the cancer community to collaborate internationally. That was one of the main reasons for us to get involved with the Brain Tumour Patients’ Charter of Rights. What I like most about this Charter is that it is written in an active voice from the patient’s perspective: “I have a right to.” That is pivotal for us and we also strongly believe that this is not just a medical issue, it’s a social and political issue. We therefore believe we must also work in the political arena, be the voice for patients, and discuss our political work on a European level.
Kathy Oliver: When I entered this field 15 years ago, I knew nothing about healthcare policy, and it’s been a steep learning curve. Policy and funding resources are obviously crucial to healthcare. That is why we believe very strongly in engagement with regulators, payers, and governments. That’s where policy starts. In our disease area, brain tumour research remains very much underfunded by governments in many countries. Policy work takes patience and determination, but the collective voice helps you get there eventually, although sometimes bureaucratic hurdles are very challenging. And that’s why I feel what you are doing, Jochen, and what we are doing, is sensible in terms of the collaborative approach because a lot of us have the same message. If we come together, policy makers will listen to our message more closely and bring about change for the benefit of patients. Building bridges within the brain tumour community as well as across other cancer communities and even other diseases is important to us. On a European level, the European Commission has recently released the Europe’s Beating Cancer Plan and we’ve been working a lot on the reaction to that through several multi-stakeholder initiatives in which we’re involved where organisations have come together to collaborate. We’re very excited about the Beating Cancer Plan and look forward to working on outputs from it with colleagues in other cancer entities.
Jochen Kröhne: Bureaucracy is a huge issue in Germany as well. But you have to invest in policy work and reach out to politicians, get them involved. We are proud to be a supporting member of a movement in Germany called Nationale Dekade gegen Krebs. For us, it’s important to be part of this to gather intelligence and get in touch with policy makers about what we can do to help cancer patients and how we can move forward on that. With yeswecan!cer, we also hold a large annual conference for the cancer community, the next one will take place this September. We’ve invited Ursula von der Leyen, who is also involved with the Europe’s Beating Cancer Plan, and our patron Mr. Spahn, the Minister of Health, will attend as well. We’re planning on discussing what exactly we can do for cancer patients and how we can help them, also with regard to quality of life. It’s very important to us to open up the dialogue, raise awareness, and include everyone. Especially when you talk about brain tumours because it affects patients and caregivers alike.
Kathy Oliver: Absolutely! And on another topic – that of the pandemic – I think one positive thing that has come out of COVID-19 is that it’s opened up national and international approaches to disease and useful policy debates about the best way to tackle disease. Quick, efficient and innovative solutions to the challenges brought on by the pandemic have been found, so if we can do that for COVID, if we can develop effective vaccines less than a year after the start of a pandemic that are working and successful, why can’t we greatly accelerate research into cancer, and more rapidly develop new, efficient treatments to significantly improve patients’ outcomes?
Keyword innovation – how can both therapies and the quality of life of those affected be improved in the future? What are your ideas and how do you advocate for them?
Kathy Oliver: I think innovation is key. And innovation doesn’t always need to be expensive. There are lots of examples out there of innovative, low-cost approaches to care that have made a very large impact on patients’ quality of life. For example, in one country, parents with young children undergoing radiation told moving stories to researchers about how they dreaded being separated from their children during treatment. And the children’s body language and distress when they were separated from their parents for radiation sessions spoke volumes about their fear of being alone in a room with big scary machines. So, an incredibly simple solution was found in response to these stories – a ball of yarn. The child holds one end of the ball of yarn during radiation and the other end is held by the parents, outside in the hallway or waiting room. A physical connection is made and fear is reduced by achieving parental closeness to the child, through a simple ball of yarn, an intervention which literally costs only pennies. We should do more of this lateral type of creative thinking.
Jochen Kröhne: I agree, and again, that’s where you need the political support and where you need the power: Germany is such a wealthy country, and it’s important to use money to address such issues for cancer patients on a national and European level.
Kathy Oliver: And it’s also important to work with all stakeholders: policymakers, academia, industry and payers to arrive at innovative solutions and to work successfully together internationally. Every two years, the IBTA runs the World Summit of Brain Tumour Patient Advocates to which we invite all of these stakeholders including industry, as they are key players in drug development and supporting innovation. We believe that our patient community should understand the therapy development process. We all need to understand each other’s perspectives in order to work productively together. Of course, transparency when working with all parties is vital to dispel any misconceptions, for example, when it comes to the relationship between patient organisations and industry.
Jochen Kröhne: Yes, that is a barrier in Germany. Of course, organizations like ours have to be independent and trustworthy, as well as put the safety of patients front and center when it comes to verifiable information and data protection. So, we need to have a debate about this, even a critical one. But we cannot exclude the industry altogether. In fact, the Deutsches Innovationsbündnis Krebs & Gehirn e.V., which founded Gemeinsam gegen Glioblastom alongside yeswecan!cer, has started a dialogue with the industry and advocates to bring all stakeholders together, aiming for more transparency. Ultimately, you need to raise awareness and that will help in getting funding for innovation that will benefit cancer patients, especially brain tumour patients. And it’s important that we fight not only for medical treatments, but for the realisation that as a cancer patient, you are human being with the ambition to lead a healthy and rich life, being part of a community and of your social environment, making sure you are included.
Let’s take a deep dive here: What do you specifically want to achieve for brain tumor patients? How can self-help improve their quality of life and their coping with the disease?
Kathy Oliver: For the patient, ideally we want to achieve better outcomes – longer survival, of course, but also a good quality of life. Quality of life is crucial and means different things to different people; it also changes throughout the journey. When you’re first diagnosed, you may have particular quality of life issues, but those are going to be different from when you’re nearing the end of your journey. You’ll have different priorities and things you want to achieve and do and ways in which you want to live your life. With the Brain Tumour Patients’ Charter of Rights, we felt we wanted to focus on the entire brain tumour journey because we do have some challenges that perhaps other cancers don’t implicate. We wanted to include rights for the whole journey from the time patients are diagnosed right through to the end of life and to make sure that we covered those important topics, like access to a second opinion and palliative care.
Jochen Kröhne: I agree. And what’s important to me as well is that every patient has his or her own choice. Some people keep their journey more to themselves, which is fine, it’s a personal decision. But for other people like myself, it’s important to talk to others about this. When I was a patient, I didn’t really know how to connect with other cancer patients. And this is where the idea for yeswecan!cer came from. We want to enable patients to tell their real stories, to feel like they have a voice and can share it. We have people who support us, we call them #Mutmacher, who encourage others to share their experience. We see a growing community of patients talking openly on Facebook, Instagram, YouTube and Blogs. Especially with Gemeinsam gegen Glioblastom, we have a very fast-growing community, and we have glioblastoma patients that are not afraid to tell their stories, give a face to this disease. It’s greatly appreciated by others affected that are looking for real-life stories and a sense of community. That’s the motto we live by – du bist nicht alleine, you are not alone.
Kathy Oliver: The tagline of our IBTA magazine is also similar – “you are not alone on this journey”! So, we are very much on the same page here, Jochen. We have similar approaches to your work at yeswecan!cer in what we do with our magazine because it has human stories – patient stories and caregiver stories. Caregivers are very important because cancer is a family illness. Speaking from my personal experience as a former caregiver to our son who had a brain tumour, the overwhelming emotions that we felt as a family when our son was first diagnosed were of severe isolation and fear. We thought we were the only people on earth who had this problem because nobody told us that there were other people and patient organizations that could support us. It took a long time for us as a family to build a support network, which enabled us to talk to others dealing with a brain tumour. Once you start talking to others going through the same thing, you know that you are not alone. It’s a very individual thing, a personal decision if you want to share your cancer experience. But for us, having a voice and listening to other people experiencing the same challenges and emotions was extremely valuable. That’s why I’m very much in favour of support groups, whether they are offline or online – they worked well for us.
Jochen Kröhne: This is perhaps another good thing that has come out of the pandemic. We have focused on digital networking with yeswecan!cer and Gemeinsam gegen Glioblastom in the past, but digitization has now gained even more momentum. No matter where someone is located, it is possible to connect and exchange information. We must continue to make the best possible use of this for the benefit of patients.
Kathy Oliver: That is true. When we first started the IBTA in 2005, the digital revolution was gathering pace, and use of social media was increasing. Now, electronic communications and the ease in using them have revolutionized how patient advocacy and support groups work. You can communicate instantly with anybody in the world these days, and it’s fantastic.
Dear Kathy, dear Jochen, thank you so much for your time and for this fruitful discussion!