A call for concrete action

©SIOPE & Joke Emmerechts photography

Unite2Cure is delighted to be a partner in a multi-stakeholder call for concrete action to improve the availability of effective innovative cancer medicines for children and adolescents with cancer.  The call was launched at the event ‘Development of Paediatric Cancer Medicines – Speeding up Innovation, Saving Lives’. Although cancer remains the first cause of death by disease beyond one year of age; very few new medicines reach children and adolescents with cancer in Europe, even after the implementation of the 2007 EU Paediatric Medicine Regulation.

The proposals were presented at a yearly event by The European Society for Paediactric Oncology (SIOPE) www.siope.eu/activities  to mark International Childhood Cancer Day (15th February 2016).  The aim of the proposals is to suggest solutions to the current lack of drug development for children and teenagers with cancer.

©SIOPE & Joke Emmerechts photography

Chris Copland, one of Unite2Cure’s founding members, and Consumer Representative, National Cancer Research Institute (UK)

 

We are proud that Christopher Copland (UK), one of the founding members of Unite2Cure, spoke at the event of the urgent need to accelerate drug development for these young people.  He called for more attractive rewards for the pharmaceutical industry to develop innovative drugs for children’s malignancies; following the example of the “Creating Hope Act” system in the USA.

Also there was Unite2Cure partner Anne Goeres (Lu) from the Foundation Kriibskrank Kanner.  She stressed the need to join forces with the rare diseases’ community in advocating better treatments.

©SIOPE & Joke Emmerechts photography

Anne Goeres, one of Unite2Cure’s founding members, Fondatioun Kriibskrank Kanner (Lu)

 

 

Member of the European Parliament Glenis Willmott (S&D, UK), a strenuous supporter of the causes of the childhood cancer community over the past years, hosted and introduced the event. Martin Schrappe (DE), President of SIOPE, presented the ‘SIOPE-ITCC-CDDF Multistakeholder Platform’, created in 2013 by representatives of parent/patient advocates, academia, industry and regulators. The Platform works on proposals to increase innovative drug development that are regularly presented to decision-makers during a series of Paediatric Oncology Conferences, the last of which led to three stakeholders’ joint proposals to improve the effectiveness of the Regulation’s implementation.

Unite2Cure is a parent-led movement which aims to mobilise the parent/child/NGO voice to push urgently for better treatments and better access to treatments for young people with cancer.  The  current status quo means that:

– 6,000 children and teenagers die of cancer in Europe each year

– less than 1 in 10 of children with relapsed terminal cancer has access to  innovative new treatments.

– whilst progress has been made; many high risk cancers have not seen any therapeutic improvements in the past two decades

– childhood/teen cancers are largely neglected by industry

– current legislation allows waivers; even when science suggests a potential use

– EMA figures show that basically no drugs are developed for the high risk cancers.

If you care – join our discussion; sign our petition, or talk to us nicole@scobie.com   or deborahjanebinner@gmail.com

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