Genomic sequencing involves mapping the genetic makeup of a GBM patient’s own tumor by taking a sample of it after surgery and analyzing it. This mapping process points to certain mutations in the genetic composition of the tumor cells. Those mutations can in turn offer clues as to how to combat the tumor which are specific to your own situation. The science is in its infancy, but it is developing very quickly.

Although the rate at which effective new treatments for many cancers are being developed is accelerating, glioblastoma risks being left behind. There remains a worrying disconnect between scientific advances and those facing the reality of this terrible disease.

Our Brain Bank will campaign and advocate to close that gap. We want all GBM patients to be central to an honest conversation with their physicians around genomic sequencing and the potential benefits it will bring for patients and their families now and in the future.

OBB believes that patients have a right to accurate information about treatments currently available beyond the standard treatment protocol of surgery, radiotherapy and chemotherapy. This information should be shared with transparency and honesty so that patients and their families can ask the right questions, understand their options, and make the right decisions for themselves. Making such information available costs nothing but opens up the possibility of more effective treatment.

OBB believes that the current way information is shared on GBM and treatment options is incomplete and inconsistent. The effect of this is that patients and their families waste precious time trying to piece together the GBM puzzle. This cannot be right.

OBB in the UK will later this year produce a White Paper that will set out this problem in more detail and provide deliverable solutions for decision makers to improve information on GBM and make it available with more honesty and transparency. We will do so in a spirit of co-operation but also urgency on behalf of those for whom time is everything.

In the US, we are carrying out an initial survey to find out how many people have access to genomic testing. We suspect that this critical step towards more personalized medical treatment is subject to huge inequalities, based on where you live and the quality of your health insurance. If so, that is a situation that is fundamentally unfair and potentially robs people living with GBM of precious time with their loved ones – a situation that OBB is committed to changing.