Unite2Cure petition hits 1,000 signatures .. but we need more

Over 1,000 people have now signed a petition from Unite2Cure, the patient-led movement which is calling for better treatment and better access to treatment for children and young people with cancer.

The petition calls on European regulators to amend the rules governing research into young people’s cancer.  It calls for better incentives for industry to invest in these rarer illnesses; and says that there should be stricter rules to ensure that promising drugs are not dropped from production when they don’t work in the more lucrative adult cancer market.

Support is coming from across Europe; and from as far afield as America and India.

Among high profile supporting organisations are: SIOP Europe, The European Consortium for Paediactric Oncology;  Childhood Cancer International, Pan Care; The Teenage Cancer Trust and the Bone Cancer Research Trust.  There is also support from senior oncologists from leading medical institutions across Europe. Parents, patients, others affected by cancer  and not for profit organisations are also lining up to sign the petition.

Most heartbreaking are the personal stories of families who have faced cancer.  Not only are children dying; but others are left with severe disabilities caused by the toxicity of the treatment used to kill the cancer.  This from a parent of a survivor:

“My 4 year old son was diagnosed with a brain tumour – Medulloblastoma. After 18 months of treatment he is in remission BUT the treatment is brutal. He now has learning difficulties, takes daily medication to treat his damaged Thyroid, has daily growth hormone injections because of a damaged Pituitary gland, has hearing loss, had cataract surgery on both eyes, Still has muscle weakness and fatigue – 2 years into remission. ALL DUE TO THE TREATMENT FOR CANCER. We need new drugs that cure the cancer but do less damage to a childs young body.”

Unite2Cure is calling on all supporters to reach out further into their own networks to continue to strengthen the case for change.  It urges all supporters to ask individual networks to sign our petition and join a wider conversation about how we need to all work together to get better drugs to children and teenagers more quickly.

Everyday in Europe 20 children and young people will die for cancer.  That needs to stop and we need to find the solutions NOW.  To  sign our petition click here.

Regular updates will be sent out on the progress of our petition and the wider work of the Unite2Cure members. If you have a personal story you would like to share please email us at unite2cure@gmail.com

Unite2Cure meets with Glenis Wilmott, MEP

Unite2Cure meeting with

From left to right: Chris Copland, Consumer Representative, National Cancer Research Institute – Pam Kearns, Director of the Cancer Research UK Clinical Trials Unit – Glenis Wilmott, MEP – Karen and Kevin Capel, Christopher’s Smile – Catherine Guinard, Public affairs Manager, CRUK

A team of Unite2Cure representatives met on Friday January 15th with MEP Glenis Wilmott, who has been actively involved in promoting changes to the Paediatric Medicines Regulation (PMR) in order to speed up the development of new drugs for kids with cancer.
Ms. Wilmott was able to provide some insight into the legislative process, but in particular, what MEPs can do to push the process forward. It is clear that what is required is a straightforward and relatively simple proposal on changes to the PMR. Framing something of this kind will be our goal during the Cancer Drug Development Forum (CDDF) congress this week in Brussels. It was also agreed that ideally a balanced set of proposals with toughening up of requirements on mechanism of action combined with some new incentives on the lines of those framed by WG2 would appear attractive.


September: International Childhood Cancer Awareness Month

To coincide with International Childhood Cancer Awareness month in September Unite2Cure is calling for immediate change to current European Legislation. This campaign is being supported by doctors and other industry experts across Europe. For a list of supporters and to join our conversation click here!

Some Facts…

It is impossible to measure the impact that childhood cancer has on it’s victims and their families by using statistics but research funding decisions are often based on numbers. Here are some facts about childhood cancer for you to consider:

• Cancer is the leading cause of death by disease in children in Europe.

• Each year in Europe, over 35,000 kids and teenagers are diagnosed with cancer.

• One out of roughly every 300 children will develop cancer before their 20th birthday.

• Approximately 25 percent of all children with cancer will die from their disease, a secondary cancer, or complications from treatment.

• The causes of most pediatric cancers remain a mystery and cannot be prevented.

• Childhood cancer does not discriminate, sparing no ethnic group, socio-economic class or geographic region.

• About one in 600 young adults is a childhood cancer survivor. Nearly 2/3 of the survivors later experience significant and chronic medical problems or develop secondary cancers as adults that result from the treatment of their original cancer.

• The average age of death for a child with cancer is 8, causing a childhood cancer victim to lose 69 years of expected life years; a significant loss of productivity to society.