High Life: U2C in Brussels

FAIR Trials reps: Christina, Chris and Evie Mengou

FAIR Trials reps: Christina, Chris and Evie Mengou

Unite2cure was well-represented this October at the Better Medicines for Children conference, hosted by the European Forum for Good Clinical Practice and the Drug Information Association. Both Delphine Heenen and Chris Copland took part and Chris had the opportunity to present on the FAIR Trials age-inclusive research campaign. A colleague from the FAIR Trials working group, Christina Bucci-Rechtweg, of Novartis, also made headway with EFGCP colleagues in planning a position paper on age-inclusive research, with guidelines for ethics committees. The idea of FAIR Trials was well-received and Chris was invited by one of the delegates to speak at a workshop on paediatric oncology at Astra Zeneca later in the autumn

Terrifying view from conference meeting room

Terrifying view from conference meeting room šŸ˜‰

Tragedy of children dying from cancer because drug companies won’t include them in trials

Unite2cure has been busy campaigning in the UK this week.

Our message has come across loud and clear: across the word we need better access to newer and kinder drugs for kids with cancer.

We must also immediately ditch lower age ranges for adult trials so that more kids can get a change of better treatments.

6,000 children die of cancer each year in Europe. It is the biggest killer by disease in the under 25 age range. We must unite for change.

The UK media has got our message loud and clear. Firstly there was an hour long documentary on teenage cancer from the BBC’s flagship scientific programme Horizon. This was followed by articles in the national UK press – all highlighting the need for better drugs for these children.

Debbie Binner is one of the founding members of Unite2Cure

 

Here are links to the press coverage and the BBC Horizon full programme:

https://www.bbc.co.uk/programmes/b0b8cdgq

http://www.dailymail.co.uk/health/article-5884939/Tragedy-children-dying-cancer-drug-companies-wont-include-trials.html

https://www.telegraph.co.uk/tv/2018/06/26/horizon-teenagers-vs-cancer-users-guide-review-film-strove/

 

Unite2Cure: calling for FAIR Trials

Our video sets out how young people with cancer are often excluded from research trials, without any just cause. This not only limits their individual options but holds back progress in finding better cures and kinder treatments for generations to come.

What are we doing about this and how can you help?

Unite2Cure has helped set up theĀ  ACCELERATE working group on FAIR Trials in order to FosterĀ Age Inclusive Research . Here we are workingĀ  with medical professionals, academic researchers, members of the pharmaceutical industry and those responsible for the ethics of research trials. The group is jointly led by a clinician, Nathalie Gaspar, and a parent, Chris Copland. You can find out more about the group here.

Our key proposalĀ  is forĀ  the age of entry to be reduced to 12 years in adult early phase studies (where medically justified). This may sound a bold target but there is no great obstacle in terms of law, regulation or safety. The issue, rather, is one of awareness and will within the research community. How then can we change this dogma?

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WHAT WE PLAN TO DO

  • Identify trials that are truly age inclusive and publicise these success stories as examples to follow
  • Lobby the pharmaceutical sector, with the help of our supporters within the industry, and put the issues to the wider research community
  • Engage with ethics committees at a local and national level, as well as with international networks like the European Forum for Good Clinical Practice
  • Provide a researchersā€™ toolkit so that the procedures and paperwork for making trials inclusive become easy options
  • State our case live, in the media and online

HOW YOU CAN HELP

  • If you work in Pharma or Research, complete our survey on current standards: ly/FAIR2018survey
  • Whether you work in Pharma, Research, Ethics or as a Patient Advocate, join our circle of supporters so that we can share expertise and experience
  • Push the arguments in your own networks. Patient advocates are often consulted on the planning of research trials and these are ideal opportunities to bring the issues to the table

Do, thereforeĀ  contact me at chriscoplandatyork@gmail.com

We look forward to your active support,

Chris Copland, co-chair of the FAIR Trials working group