Position Statement for Debate 300027

Westminster Hall Debate e-petition 300027 - Fund research for childhood cancers with the worst survival rates - Monday 7th December 2020

Lead - Tonia Antoniazzi MP


Position Statement Abbie’s Army - A Children’s DIPG Brain Cancer Research Charity


      1. About DIPG

  • Key points: Incurable. Terminal prognosis. Average 9-month survival. No hope.

DIPG tumours are the most aggressive of all childhood cancers, the prognosis is always ‘terminal’. 

Due to their location in the brainstem they cannot be surgically removed, they do not respond to chemotherapy and palliative radiation is the only ‘front-line’ validated standard of care. This offers just a temporary respite of symptoms (in approximately 70% of cases) before the tumour progresses and the child dies in a truly short space of time.

 The median survival rate is just 8-12 months. Typically, the last months and weeks for the child have an extremely poor quality of life, with many deficits from chronic debilitation. 

      2. No Advancement in Treatment.

  • Key point: Zero improvement in clinical treatment or outcomes over last 40 years 

Whilst medical advances in the past 40 years have greatly improved the survival rates for children diagnosed with most types of cancer, these advances have done nothing for children with DIPG. 

There is no chance of survival and the average life expectancy is just 9 months.

  • Brain tumours remain the most common cause of cancer-related death in children, and DIPG is the leading cause of death from paediatric brain tumours.
  • A child diagnosed with DIPG today faces the same prognosis as a child diagnosed over 50 years ago.
  • There is still no effective treatment and no chance of survival. Only 10% of children with DIPG survive for 2 years following their diagnosis, and less than 1% survive for 5 years. 

This is unacceptable and represents one devastated UK family every nine days.

      3. No Government Support 

Such is the severity of DIPG there have been numerous mentions in the House regarding ‘brain stem tumours’ ranging from previous debates in 2016 through to the most recent during PMQ’s on July 15th, 2020. 

The Prime Minister was tasked by Kirsten Oswald MP on behalf of her constituent Daniel Caplan to which the PM replied “I will do what I can to ensure that the hon. Lady is able to make representations to the Department of Health about ensuring that childhood brain stem cancers are properly understood and properly tackled by this country.” 

Despite promising words, to date nothing has changed, and urgent action is required.

      4. No National UK DIPG specific trials

  • Key Point: Children, Money & Research should stay and be supported in the UK - Extremely sick, terminally ill children are being forced to travel abroad to pursue trials and experimental treatments. 

There is a complete lack of viable clinical options available within the NHS.

Currently there is no National trial for child patients newly diagnosed with DIPG within the UK. This is forcing many families abroad to Phase I trials for any perceived ‘hope’ with terminally ill children. 

It is hugely expensive for families to take these terminally ill children and their guardians overseas for treatments (which are unproven). 

Each year many hundreds of thousands of pounds leaves the UK economy in pursuit of treatment. Evidently until we have some viable opportunities or therapeutic success this can and will only continue to become more prevalent. 

      5. The UK has excellent collaborative researchers and medical facilities – assign sufficient funding to DIPG research and implementation of new treatments.

  • Key Point: We urge government to convene and appoint specific UK experts directly to make centralised efforts and bring forward a new prioritisation strategy for DIPG care in the UK, based on this collaboration.

Small patient cohorts and the fact that specific experts in this field are spread around the world make any research difficult, all ‘rare’ cancers require scientific and government backed global collaboration.

The UK has highly accomplished scientific DIPG researchers such as Professor Chris Jones (Institute of Cancer Research) and clinical advisory specialists that are ‘well placed’ to participate and coordinate with DIPG/DMG global consortia. These experts should now be afforded sufficient resource to answer key scientific questions of how we might do better and challenge these dire current outcomes and play ‘their part’. 

This is not only in translating the ‘science’ and knowledge that funding from pre-clinical research has accumulated into new available treatments for our children, but also in facilitating and running the most progressive studies and clinical trials in the UK, with focus being on ‘shared knowledge, data outputs and if necessary ‘shared care’ models for patients. 

We feel there is significant ‘unmet need’ to do much more in the shorter term with greater precision and focus addressing the mitigating circumstance and severity of DIPG disease. With such a short clinical course many more children will simply die waiting for any longer-term efforts to pay off. 

     6. Current Sources of Funding

 Most DIPG research (both in UK and globally) comes from parents and parent led groups. 

There is no identifiable amount of direct Governmental funding for basic, translational, or clinical research or ‘commissioned’ research into the disease. 

Please ask whether this should be the burden of parents and families that have already paid the ultimate price – dealing with the loss of a child is unimaginable, to add the financial stress of seeking a treatment abroad whilst facing that imminent loss is unbearable.


 What are we asking Government to do? 

Possibilities have been identified, which if adopted could transform outcome, whilst establishing the UK as a centre of excellence in this field. 

Fund and/or ‘commission’ UK DIPG research and support alignment with other institutions and research core centres to participate in the most progressive DIPG studies known. Giving children in the UK access, and every opportunity available to contribute to the most current data driven therapies in the UK.

The pandemic and resultant Oxford Covid vaccine is a clear demonstration of the importance of ‘science’ and success of the UK’s expertise in medical research and what can be achieved in a short time frame when finance is available, and minds work collaboratively.

The speed and flexibility of research labs and scientists to completely switch their focus for a short time to address a common goal is absolutely something that could yield results for DIPG research.

Lessons to learn from, where new ideas are needed to develop vital alternatives for DIPG children.