Bridging our communities across the globe

Brain Tumour Support NZ presents at global brain tumour conference in Austria

by Chris Tse

Every two years the International Brain Tumour Alliance (IBTA) invites selected brain tumour patient organisations from around the world to their global Summit. Following a two year hiatus, the 2023 IBTA Summit convened in Vienna, Austria, with 104 delegates from 33 countries attending, including Brain Tumour Support NZ chair and IBTA senior advisor, Chris Tse. In this article, Chris presents his thoughts on the conference.

There is something powerful and dynamic when a group of people with like minds and a shared purpose get together in the same room. It is like a choir singing in complete harmony – the synergies generated can transcend the physical realm and produce something truly meaningful.

This is perhaps the best description of an IBTA Summit. It doesn’t matter where you come from or what language you speak, when you walk into the room you instantly feel like you belong. As one new delegate attending the Summit for the first time said to me: “I feel like I have found my people.”

Another feature of the IBTA Summits is the chance to rub shoulders and exchange ideas with some of the top brain tumour clinicians, researchers and industry leaders from across the world. This year’s international faculty included several luminaries from the field of neuro-oncology, including Dr Tracy Batchelor, Dr Susan Chang, Dr Matthias Preusser and Dr Manmeet Ahluwalia, among others.

At the regular scientific conferences it can be difficult for patient advocates to meet clinicians of this stature, let alone spend time with them. Since its inception, the IBTA has sought to build collaboration across the medical, scientific and patient divides, on the principle that the patient perspective needs to be considered in all aspects of brain tumour research, treatment and supportive care. As IBTA director and co-founder, Kathy Oliver, said in one of her presentations: “Nothing about us, without us.”

In keeping with this idea, the theme of this year’s Summit was: “Bridging our communities across the globe, building progress, building hope.” Over the course of three days, a series of plenary lectures, masterclasses and workshops were held.

I was delighted to be invited to present on the topic: “Back to School With a Brain Tumour” as part of the opening day plenary session. My talk described the process of producing Brain Tumour Support NZ’s first paediatric brain tumour resource - our education guide “Supporting Students With Brain Tumours”. It was a fantastic opportunity to showcase our team’s work to an international audience. I received some wonderful feedback on our publication which was very gratifying, especially coming from our peers.

Later that afternoon I facilitated a Masterclass: “Brain tumour clinical trials – are we doing it right?” headed by Dr Manmeet Ahluwalia, a leading neuro-oncologist from the US. This was an interactive session which discussed important questions such as why participation rates in brain tumour clinical trials are so low; why so many clinical trials fail; and how can access to trials be improved internationally. It is an important issue for Brain Tumour Support NZ as we continue our advocacy efforts to have more brain tumour clinical trials set up in New Zealand.

On the final day of the Summit I was part of an expert panel to discuss “Brain Tumour Research – Barriers and Solutions”. I was asked to provide a caregiver perspective on brain tumour research, which is a subject close to my heart.  

Before I became a patient advocate I was a regular caregiver, just like the many others who are thrust into the role when their loved one is diagnosed with a brain tumour. From my perspective, research has always been a ‘tangible manifestation of hope’ - hope for a better outcome than that offered by the current standard of care treatments.

As a caregiver researcher some of the barriers or frustrations I have come across when it comes to brain tumour research include:

• The lack of funding from governments allocated to brain tumour research

• Wasted research funding - precious grant money allocated to poor research projects

• Lack of collaboration - researchers working in silos, often leading to unnecessary or duplicated research

• Poor standards of scientific reporting, especially in the mainstream media, sometimes leading to misinformation

• Inefficient drug development process - the extraordinary amount of time and money required to develop new treatments

• The high failure rate of late stage clinical trials in glioblastoma

However while there is still no cure for most brain tumours, there is much cause for hope. In recent years there have been great strides made in understanding the underlying biology of many brain tumour types, their tumorigenesis and the biologic and metabolic processes which fuel their growth.

Some of the recent developments which make me optimistic about the future of brain tumour research are:

• Promising advances in drug delivery, for example, the use of focused ultrasound to open the blood brain barrier

• The use of AI (artificial intelligence) and big data to harvest more information from clinical research, compassionate access programs and real world data to speed up the drug development process

• Advances in diagnostics, such as liquid biopsy, which will result in faster, more accurate diagnoses, better monitoring of treatments and improved quality of life for patients and caregivers

• New, innovative therapies, such as immunotherapy, gene therapy, oncolytic viruses, targeted agents and tumour treating fields, many of which have shown efficacy in other cancer types.

The challenge for the wider brain tumour community is to build progress in these and other areas while breaking down the barriers which are slowing down or blocking progress. In New Zealand, we have particular challenges posed by chronic underfunding of health research by successive governments and the lack of a research culture in our health system. Only when our best and brightest minds can be freed up to conduct brain tumour research will we see meaningful improvements for patients.

Chris Tse
July 2023

Photo credit: Photos taken by Martin Hörmandinger (www.mh-photography.at) at the IBTA’s (www.theibta.org) fifth biennial World Summit of Brain Tumour Patient Advocates in Vienna, Austria, June 2023

Chris Tse’s trip to Austria was made possible by a grant from the International Brain Tumour Alliance.