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Brain tumours kill more children and adults under the age of 40 than any other cancer

The APPG, advocacy and working with Pharma - our week in campaigning

by Hugh Adams

As you know we are very proud of our position providing the Secretariat to the All-Party Parliamentary Group on Brain Tumours (APPGBT). It forms a crucial part of our Westminster focussed work and as a charity we have always been clear that to achieve the parity of research funding needed for brain tumours, we will influence the Government and larger cancer charities to invest more nationally. The  APPGBT was established in 2005 and you can read more about its genesis, evolution and current standing here – but what you won’t be able to see is the date of the next meeting. I’m going to tell you though; it will be held virtually on Tuesday 10th November from 09:00 – 10:30. Agendas and template invites for your MPs will be forthcoming in future updates but if you are already in contact with you MP you might like to send a quick note asking them to save the date ( please let me know if you have done this though!) – thank you.

One MP we certainly hope will be attending is Hilary Benn who received the following answer to his question “How much has been allocated from the public purse to research on glioma brain tumours in each of the last five years?”

The answer from Minister of State for Health Edward Argar MP was :

The Department’s National Institute for Health Research reports expenditure on glioma brain tumour research in each of the last financial years is shown in the following table:

2015/16 2016/17 2017/18 2018/19 2019/20
£1.29 million £1.40 million £1.69 million £1.94 million £2.12 million

Gar – I’m reserving comment in this instance but we have another question based on your reply – keep reading these updates to see how this conversation continues, and thanks again to Hilary Benn for his support.

As the voice of the UK brain tumour community it is our duty to ensure all potential opportunities to improve options and outcomes for brain tumour patients are explored and so, I believe, we should explore campaigning spaces outside of the overtly political and, to that end, this week I thought I would look at how we look to engage with the pharmaceutical industry.

There was a knee jerk reaction to any mention of Pharma I regularly encountered when I first joined Brain Tumour Research( a decade ago next week) that the big companies had no interest in a rare disease like brain tumours as they wouldn’t make millions from drugs  designed for cancers of lower incidence. I felt then, and feel now, that this is  a remarkably unhelpful attitude and have always looked to forge links with Pharma where possible. Medical progress I think has been on my side with this. The  advent of personalised medicine heralds an age where all cancers are essentially rare because they are as individual as the host – they are unique to the patient. The work of genomics England is important in this and I was pleased to attend the Genomic Medicine Cancer Strategy Group monthly meeting this week – not sure I understand all of it but I do my best, and to be there to contribute a little is better than not to be there and not contribute at all. Also this week I signed up to be part of a cancer coalition steering group looking to have closer links with industry, I spoke with a representative of one of the largest pharmaceutical companies in the world about barriers to brain tumour clinical trials in the UK and explored setting up meetings with political stakeholders and those with the expertise to move the dial in terms of paediatric therapeutics. These aren’t distractions but are my humble attempts to offer hands across the ocean in terms of our, brain tumour, community. What I am doing can be summed up in one word, advocacy

You have put your trust in us, and I have met so many of you in the past decade that I feel empowered, honoured and proud to advocate on your behalf

In a rather gloomy week I do have a sense of optimism but it is so important that we are your sounding board – please continue to feedback, praise, criticise and propose alternatives . If we are your advocates you must tell us what you think, what you want, what brings you down in tears of frustration and what would make your day.

Talking of advocacy, I thought you might be interested to hear about our long term supporter, campaigner and patient advocate Philip Scard.

Reading our weekly research news update back in June Philip was surprised to read that his very tumour type was having research conducted into it in the US by the company he was working for in the UK! Of course, he made enquiries and you can read more about Philip and Thermo Fisher Scientific’s Oncomine Dx Precision Test in this blog – please note we are still based in Milton Keynes but Philip felt a London location would make more sense in a US blog – I think he’s right.

So, I mentioned the importance of your input if we are to advocate for you - but who else holds us responsible? Well our Scientific and Medical Advisory Board (SMAB) provides independent, objective reviews of our research programme and strategy and Brain Tumour Research trustees are vital members of our team, helping to guide us closer to a cure with their unique expertise. Personally my responsibility is also to a group of people I have known  like Martino, Carl, David, Helen, Alexander and Gemma, too many people, and  is also to my mentor – as well as being my line manager ! - our Chief Executive Sue Farrington Smith MBE. Well we’ve been working together for a decade so I think we are doing okay – but you are the judge of that in all that you do to support us – thank you.

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