In Australia the parents of two little girls diagnosed with DIPG are demanding that a new brain cancer drug be made available to them. In this moving piece from 9 News Australia, they describe how research conducted in Australia is being taken to the trial stage in the US first whilst in Australia they are having to resort to setting up petitions and accessing expensive drugs from Germany to give themselves hope. This is a narrative that we are battling in the UK too.
Al Musella President of the Musella Foundation for Brain Tumour Research & Information and a leading brain tumour campaigner in the US says:
“The video is about families with kids fighting brain tumour who want to get an experimental drug that I believe will be the basis for a cocktail approach that will lead to a major breakthrough as soon as we are allowed to try combinations with it. I get calls and emails from around the world requesting help getting access to it and most patients cannot get it. There are really no approved alternatives. Imagine being a parent of a child with an incurable disease and you know there is a treatment available that may help but you cannot get it for your child. That is my worst nightmare and keeps me up at night.”
Al’s blog continues with criticism of a too risk averse Food and Drug Administration (FDA) meaning that “the system serves only to prop up the huge expense of drugs and create monopolies by making it so expensive and time consuming to get a drug approved that many good drug candidates never make it into humans and only large companies can even try to get a drug approved.”
He then goes on to introduce the Promising Pathway Act which is a proposed law in the US Congress now.
The Promising Pathway Act will hold down the cost of drugs because the cost and time of getting FDA approval is reduced by about 90%. Also, there will be more competition as the barriers to approval are reduced, allowing the trialling of the best new ideas without having to raise huge sums for each new attempt at improvement.
We will follow the progress of this act with interest.
In other news this week the Australian singer, actor and cancer activist Olivia Newton- John “passed away peacefully” in Southern California on Monday. Her lengthy experience with the illness saw her become a fierce advocate for cancer awareness.
She established the Olivia Newton-John Foundation Fund, an independent charity sponsoring global research into plant medicine for cancer.
The charity says it is “committed to realising a world beyond cancer”, through pioneering scientific research into less invasive ways to treat the disease.
She also founded the Olivia Newton-John Cancer Wellness and Research Centre in Melbourne, a public hospital dedicated to innovative treatments and wellness programmes to support patients’ mental health.
The cancer facility is also a hub of research, with more than 200 clinical trials in progress focused on immunotherapies – which helps the body’s immune system to recognise and fight cancer cells – and personalised medicine diagnostics.
Olivia was clearly a remarkable woman, and we salute her memory.
Cancer hugely impacted her life from her first diagnosis in 1992 and the advances in breast cancer care over the following 30 years would have informed her treatment and prolonged and saved the lives of many women with the same diagnosis in the past generation.
We know that this hasn’t been the case for brain tumour patients.
This list of famous people who have died from a brain tumour shows just how young some of them were at the time of their death and is a very clear indicator of the indiscriminate nature of the disease.
Whilst our focus at Brain Tumour Research will always veer towards ‘Cure’ rather than ‘Care’ we acknowledge that other brain tumour charities do fabulous work in the care and support arena and we did note the findings from the recently released Cancer Patient Experience Survey 2021.
Brain cancer has the lowest average rating of care of all the cancer sites published, with a score of 8.37 out of 10 compared to an overall cancer average of 8.92. Out of all the questions asked about patient experience, 80% of them had a lower-than-average score from brain tumour patients.
The diagnostic experience for 50% of brain tumour patients was that they only spoke to a primary care professional once or twice before their cancer diagnosis, compared to 77% for all cancer patients.
Only 61.7% of brain tumour patients agreed that diagnostic test results were explained in a way the patient could completely understand, compared to an average of 78.8%.
On the upside, 83.3% of brain tumour respondents were told they could have a family member, carer or friend with them when told of their diagnosis with the survey average being 71.4%.
Moving back to focus on ‘Cure’ rather than ‘Care’ then once again Al Musella is a very useful source of worldwide knowledge on available clinical trials. The Musella Foundation for Brain Tumour Research & Information is a non-profit public charity dedicated to helping brain tumour patients through emotional and financial support, education, advocacy and raising money for brain tumour research and the clinical trial page of their website is here
Also, US focused, ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world – use both brain tumor and brain cancer as search terms on this site.
The European Organisation for Research and Treatment of Cancer (EORTC) Brain Tumour Group (BTG) initiates and conducts academic clinical trials in patients with brain tumours, as well as designing and completing translational research associated with these trials. Its strategy is to challenge, re-define and develop standards of care in all controversial areas of diagnostic and therapeutic Neuro-Oncology, with a focus on diffuse gliomas of adulthood of WHO grades II to IV and, in recent years, also meningioma.
The Cancer Research UK Clinical Trials Unit (CRCTU) has been designing and delivering cancer trials for over 40 years. Working in both paediatric and adult settings, the Unit collaborates with a large number of investigators both at a national and international level.
The CRCTU has developed a number of national initiatives over the years, and it is Cancer Research UK's dedicated clinical trials unit for children's cancers. The Unit has a strong track record of delivering breast, haematological and paediatric cancer trials but other strategic disease sites do include brain cancers.
Al Musella or Olivia Newton-John, Australia or America the need for awareness raising and campaigning remains the same.
In New Zealand too, as you can see from this link to Brain Tumour Support NZ who have been discussing waiting times for MRI scans on Radio New Zealand. When we commented on this great piece of awareness raising, they said that they “aspire to reach your benchmark in terms of effective advocacy!” – a lovely comment from the other side of the world.
We have the wonderful International Brain Tumour Alliance (IBTA) with its inspirational Founder and Co-Chair Kathy Oliver to thank for forging these connections with Al and with New Zealand Brain Tumour Support NZ Chair, Chris Tse.
We are proud to be associated with the worldwide brain tumour community.
However, for us the focus is, and will remain, the UK-based early-stage research we fund and the UK Government who we will continue to lobby for change.
Your support in doing that is so sincerely appreciated.
With this talk of worldwide collaboration and all of us campaigning and advocating in our different ways across the globe I was reminded of a quote from Ivan Noble in his book ‘Like A Hole In The Head: Living With A Brain Tumour.’ Ivan was a BBC journalist who died from a glioblastoma aged 37.
He said “Cancer will lose, and people will win”
Checking back on Amazon I realised that I purchased ‘Like A Hole In The Head’ on 29th September 2010 - two days before I joined Brain Tumour Research
Related Reading:
- World spotlight on brain tumours as summit underway in Maryland
- A reading list for the brain tumour community