This weekend I joined over 90 other like-minded people at the Melanoma Patient Network Conference in Brussels. Amongst us were politicians, representatives from drug companies, members of organisations like EMA & NICE, oncologists and patients.
We came from all over the EU…some came with specific thoughts or questions they were hoping to seek support with, or answers for. Some had information or ideas they wanted to share. Most, like me, went with our own frustrations and wanted to achieve that illusive “light at the end of the tunnel”…we wanted to see change. The Conference was paid for by the 5 main drug companies – they want change.
Melanoma is rare. You have read the previous statistics I have given you…1 in every 3 Cancers Diagnosed today is a Skin Cancer….Melanoma accounts for just 4% of this…..and that sadly 7 people Die from Melanoma in this country every day.
Now look at up to date statistics from a wider European level that I was given this weekend;
In Europe there are 6.6 million people who have had Cancer and have passed the magic 5 years with no recurrence…they are survivors…they might still have more battles ahead…but their fight has lasted more than 5 years.
However, there are 62,000 Europeans diagnosed with Melanoma every year….and 20,000 deaths in Europe from Melanoma every year….many of them don’t get anywhere near 5 years.
I find that ratio wrong.
That is a Diagnosis v Survival Ratio of ¼……really …in 2014????
If that ratio represented the mortality rate of another more common type of cancer there would rightly be uproar.
And so we went to the conference to join our voices together…we formed a group…and together our voices demanding …pleading for help…for drugs…for support…is louder..we hope!
One of the amazing speakers showed us a document he had produced called the Melanoma White Paper…in this document they found that Melanoma patients suffer twice. First they suffer from the disease….then they suffer with an appalling lack of information at every level.
That lack of information starts with getting access to treatment.
As I have previously mentioned there are very few treatments available for Melanoma…and often we rely upon Clinical trials as our only means to obtain access to any sort of medication. We willingly as patients agree to become guinea pigs because we have no other options. Many of these drugs & combinations of drugs have the most horrendous side affects…trust me…you would question the mind of a people that would knowingly put themselves through something so bad….but we do…because it is better than doing nothing.
Most of Saturday was spend discussing the current route onto a clinical trial for a patient, and the route from the political point – of “how to get the drug brought to trial”…the frustrations and barriers faced.
The pride we have in the “uniqueness” of being European…is also a massive hindrance when it comes to getting a drug brought to use correctly in the individual countries and regions.
With the current system a Drug is licenced by the FDA in America….it then gets licenced by the EMA in Europe for trial…then individual countries and in some cases regions have to allow clinical trials…before the drug can even get approved for use…. and some countries do not have enough Melanoma patients at specific stages that meet the stringent base-line criteria, in order to get trial results that are promising enough (!) to enable use of the drug in that country…..then we face an entirely different fight – getting the funding for the drugs!
One Melanoma patient Lori Murdock did a presentation…she likened a clinical trial to a modern version of medieval torture “First you are told your mole is nothing, then you are told it is going to kill you & then you are told that there is a drug that can help you, but you are not going to be given it!”
There was a brilliant presentation about a clinicians perspective of Clinical Trials for Melanoma patients from a Spanish Oncologist called Salvador Algarra & his talk really resonated with me…he totally understands and empathises with the issues patients face. I am lucky at the moment with the team at Oxford…but it is truly sad that so many patients have Oncologists that are not equally passionate about their care as Dr Algarra clearly was for his patients.
There was a presentation from Dr Gauthier Bouche of the AntiCancer Fund that I found extremely interesting because of recent trials that combined “Clinically approved drugs” and things that are considered “alternative” such as Turmeric & Green Tea – which are Melanoma Superfoods & have enormous & proven benefits. In my mind he validated my opinion of the importance of taking ownership of your own health & doing everything possible to be “healthier” when standard medical drugs are not available.
Attendees of the conference were asked to create posters that highlighted areas of interest to them in our Fight for Melanoma. Whether issues with Clinical Trials, fundraising activities of interest or issues of concern such as Sun Bed use – the posters were varied & educational.
My poster was linked to this blog & the things that I believe all Melanoma Patients (and frankly everyone) should introduce into their lives in their own Melanoma Superfight.
The Conference was for me as a relative newbie, extremely informative & educational. I laughed…I cried….but I left feeling really positive.
The plan is that we improve access to information and paths to clinical trials in our own countries & that we share the success and failures we have in order to find a united path to a cure.

We have to have momentum…we left inspired, full of ideas and energy & we should not let that stay behind us in Brussels. So often plans hit brick walls or just get delayed with too much talking and not enough action.

I spent a lot of time with Gillian Nuttall from MelanomaUK – she was my first “contact” after my Melanoma diagnosis in June last year. With a background in law she is a powerful force in the world of Melanoma in the UK, fighting to support patients with battles they need help with and her charity raises a huge amount of money that in turn helps our cause.
The conference gave me an idea – an instant resolution to a big problem and Gillian & I are going to work together to make that idea happen – a project that we can work on that will actually help Melanoma patients in this country. Something I can focus my energy on…..once I have got passed this next road block.
It’s April 1st tomorrow…time for that dreaded repeat Colonoscopy.