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DIALOGUE WITH STAKEHOLDERS - Dialogue with stakeholders

Patient Prospective - Jayne Bressington

Publication date: 19.08.2015

Getting to the gist of rare-cancer issues 

Jayne Bressington is Patient Director for the PAWS-GIST national alliance and a trustee of GIST Support UK.

The PAWS section of the name is an acronym for paediatric adolescent wild-type syndromic, while GIST stands for gastrointestinal stromal tumour.

The latter is a type of sarcoma found in the digestive system, most often in the wall of the stomach. While generally rare it’s even less common in the under-25s and the group’s stated aim is to find the cure for these rare GIST cancers in young people, which react differently to drugs already developed and used successfully for adult sporadic GISTs.

‘Wild-type’ refers to a group of diverse sub-types, very different genetically from the more common form of GIST. These sub-types affect a much broader age range, from young children upwards.

So how did the alliance get started?

Jayne, mother to a young sufferer, explains that the alliance was formed in the unlikely surroundings of an Oxford pub back in 2010, and is a partnership between patients, carers and healthcare professionals. Its goals were, and remain, to raise awareness, improve treatment and stimulate research in order to understand the causes of the cancer and, eventually, find a cure.

Having been surprised at the lack of knowledge of GIST in the UK, Jayne set to work and eventually tracked down a group of oncologists with knowledge of GIST. A leading specialist among them was Dr V Ramesh Bulusu.

Ramesh is chairman of the Cambridge GIST Study Group and a consultant oncologist based at the Cambridge University hospital foundation trust. He now heads up the clinical side of the alliance.

Of course, the alliance had to quickly identify the challenges for those with, not only GIST, but rare cancers in general. And not only in the UK but Europe-wide.

Says Jayne: ‘Among the problems with rare cancers is that nobody knows what causes them, most doctors haven’t heard of them and it’s very difficult to find doctors who are experts in them. This can lead to wrong or late diagnosis, which often leads to avoidable progression.

‘Coupled with this you find that there’s little research or money for it, partly because the numbers are small – which also impacts on the amount of patients available for any clinical trials – while there is a lack of innovative treatments and those that exist are, of course, expensive.

‘Again because of the small number of patients, it’s difficult to find clinical data or even other patients as they are so dispersed.’

Plenty to improve upon then and, since that first four-hour meeting in Oxford, the now much-broader team has managed to establish a national GIST tumour bank, while a national GIST database is currently under construction.

Not only that but, on 27 March, a specialist clinic (only the second in the world – the other is in the US) will open in Addenbrooke’s Hospital in Cambridge. The clinic will operate over two days, three times per year, allowing up to 12 patients at-a-time to meet each other and GIST specialists from a variety of disciplines.

So far, so good. But there is still much to be done. So what does Jayne see as the necessary actions that need to be taken on a European level to speed things along?

‘When it comes to rare cancers in general, among other things we need to educate front-line doctors so that they can recognise rare cancers earlier, grow cross-border cooperation and an infrastructure that supports translational research, plus allow tumour banks to benefit from easy transfer to aid that research.

‘On the subject of cross-border collaboration, smaller national patient groups should join with others on an international scale and the best existing treatment should be made available to all rare-cancer patients regardless of country.

‘And given that we’re talking about relatively small numbers, we also need clinical trials on an international scale to maximise the amount of patients involved.’

But that’s just the beginning because, as Jayne points out, there is also a need for common-sense approaches to patient-data registries, cross-border reimbursement; drug-approval systems and more.

So while the diseases may be rare, the messages Jayne and her fellow alliance members have are not. In fact, it’s fair to say that they echo those of patient advocates everywhere.

www.pawsgistclinic.org.uk 

 

Jayne Bressington was talking to Brussels-based freelance journalist Tony Mallett

Author: Tony Mallett
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