Accelerating Together

Last week, Unite2Cure participated actively in the ACCELERATE Paediatric Oncology Conference in Brussels. This event is a unique occasion for high-level experts to reflect upon and discuss concrete proposals to accelerate new oncology drug development for children and adolescents.

The conference is part of a unique multi-stakeholder joint initiative, the ACCELERATE multi-stakeholder Platform. Co-organised by CDDF, ITCC and SIOPE, this platform provides a transparent forum enabling patients and parents’ organisations, academic paediatric oncologists and haematologists, pharmaceutical companies and EU regulatory network representatives to collaborate and jointly address specific obstacles to faster and more effective treatments for children and adolescents with cancer, including the needed changes to the Paediatric Medicines Regulation.

Innovative therapies could target several paediatric malignancies and, thus, save many young lives. However today less than 1 in 10 children in relapse with a terminal cancer has access to these types of medicines, and investment in paediatric oncology drug development is insufficient.

Paediatric drug development is currently regulated in Europe via the EU Paediatric Regulation. 2017 is the year of the 10th year report by the European Commission on this Regulation: 10 years of learning, 10 years of success and failure, 10 years of interaction between stakeholders. A huge experience to build upon in order to accelerate innovation for children and adolescents with cancer.

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The Accelerate Conference provided us with a valuable opportunity to discuss successes and failures in paediatric development, as well as to discuss the strategies to accelerate new oncology drug development. It was also a chance to share experience, harmonize and strengthen the collaboration between all stakeholders at the international level (Parents, Academia, Regulators, Pharmaceutical Industry). This year was the 5th anniversary of the conference, and a wonderful chocolate cake was served to commemorate the event.

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Angela Polanco, one of Unite2Cure’s founding members, described her overall feeling about the conference: “It was an amazing few days spent with colleagues, friends and new friends. There exists so many possibilities for change and the people to make it happen includes you and me. Change can only be made with passion, dedication and consistency and by not being afraid to have a voice, even when the challenge seems so great. We are excited to see the progress made in the upcoming year, for all those children that deserve to live long and happy lives free from cancer.”

Some points that were presented and will remain a priority for Unite2Cure:

 The waivers for adult-only diseases are not relevant in oncology and must be amended: what is most important is the mechanism of action of a given drug,
 There must be prior discussions to select the most suited drugs in order to match the best available therapies with children suffering from rare or refractory malignancies,
 The delays must be reduced in starting paediatric development of potentially life-saving innovative drugs,
 The rewards must be more effective and flexible to increase the interest the development of new and specific paediatric medicines,
 We must get rid of the 18-year dogma and allow adolescents to participate in adults trials.

Delphine Heenen spoke to the audience about “Raising awareness and the EU political agenda” with a very well thought-out and moving presentation which drove home our message. She will be representing Unite2Cure again today at SIOPe’s ICCD in Brussels.

Here is just a small part of Delphine’s speech “When my son Raphaël was diagnosed with cancer in 2013, the comforting words most people felt obliged to say were really often the same: “I am so sorry but nowadays, treatments are making such progress, it’s going to be OK”. And I thought it was true. The irony is that IT IS NOT TRUE FOR CHILDREN. My son relapsed end 2015 and when I started inquiring more specifically into the best treatment options for his relapse, I was quite shocked to realise that the most recent drug he had received in 2013 dated back from 1988 -25 years! And the treatment for his relapse was not quite more innovative with the most recent drug being from 1998.
Children are treated with old drugs. They are left out of the innovation we read about almost every week in the papers for adult cancers.
I apologise for the comparison but the situation is shocking; hence shock is what I want to convey: cancer cures are not like movies. There should not be an “adult-only” section. Children and cure belong together!
And we can do better.”

 

 

Unite2Cure’s immediate goals following the conference are to continue to push for changes to the Paediatric Medicines Regulation in line with the Resolution adopted by the EU Parliament in December 2016. We will also begin working on the 18 age limit dogma – as there are no medical, legal or ethical reasons for adolescents not to be included in adult trials.

Together, we can make a difference!

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Fireworks for International Childhood Cancer Day

February 15th was International Childhood Cancer Day and one way we chose to celebrate was by dispatching our reply to the European Commission’s Consultation on the Paediatric Regulation on the same date as the ICCD call to action. This was the climax of weeks’ of work, cooperating with patient advocacy groups in Spain, Italy, France, Britain, Switzerland and across Europe to push home a set of common messages about the need for better research for children with cancer. You can read a copy of the U2C reply here.

Also on February 15, a feature was broadcast on French TV which showed how cancer affected one Belgian family. Featuring U2C activist, Delphine Heenen, and set up with the assistance of Anne Goeres, this demonstrates why there is a need for ‘more support for childhood cancer research, cure and care.’ You can watch the film at the link here.

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The soundtrack is in French or German, so if you do not speak either of these languages, you will have to ask a friend who does. If you do not have such a friend, then make one.That is what this project is all about.  😉

URGENT: Call on your MEP to support children with cancer

Dear Supporter

We have just received news that, within days, Members of the European Parliament will vote on a resolution vital for the future of children with cancer. We are asking you to contact your MEPs now, urging them to support the Resolution on the Regulation on Paediatric Medicines on December 15.

Our Toolkit here provides a simple ‘two- click’ procedure that will get a message to your elected representatives fast. It also gives plenty of background on what the Resolution is about.

This is a once in a decade opportunity to transform research into childhood cancers and other young people’s illnesses. Please call on your MEP to represent you and all those that have been affected by cancer by voting YES to the Resolution on December 15.

Thank you from all at Unite2Cure

Let’s Do #More4KidsCancer – Support Our Campaign by 15 Dec 2016

Between now and Thursday 15th December 2016, support our online campaign Let’s Do #More4KidsCancer to act in favour of children and young adults with cancer.

more4kidscancerSIOPE, CRUK and Unite2Cure are calling for EU institutions and civil society to speed up the development of safe and effective anticancer therapies for children and adolescents, as the European Parliament is voting on a Resolution about the EU Paediatric (Medicines) Regulation.

In Europe, less than 1 in 10 children with a terminal cancer have access to potentially life-saving innovative medicines. Ten years after its approval, the EU Regulation did foster progress in paediatric drug development but remained insufficient for paediatric oncology. Too few drugs targeting childhood cancers are currently under development, despite cancer remaining the first cause of children’s death by disease in Europe.

Support our cause by clicking here: it takes 5 seconds to join our campaign and it is very easy to do.

For our campaign, we are using the “Thunderclap” tool: it allows people to pledge a Tweet/Facebook message with our important message, and unleash them all at the same time on 15th December, thereby “flooding” the web. Think of it as a “Twitter flash mob”.

If you are active on social media, we would like to ask you to add your support via Twitter or Facebook, by using #More4KidsCancer, or even posting something gold/a golden ribbon to show that you understand the fundamental importance to increase cure and quality of treatment for children with cancer.

With your contribution, our voice will be stronger!

Thank you very much,

SIOPE, CR UK and Unite2Cure