Last Wednesday I left Cork airport, late on what was literally a flying visit to Milan, I actually almost spent more time getting there and back than I did in the country. As the flight left Cork late I even managed to fit in another personal best gate to gate run through an airport, in Schipol luckily arriving just in time to join the already boarding passengers on my connecting flight, but not long enough for a visit to bathroom which I instantly regretted when that flight got delayed on runway. As they say you live and learn!! On the flight from Cork I had been seated second row from the front next to a let’s say larger lady from America she was traveling to Scandinavia to give a speech and couldn’t understand why she had to pay for her wine in First Class. I had a little giggle until she told me she had paid €167 extra for the privilege our national airline has some questions to answer I think! I came to the conclusion she must have been attending a narcolepsy conference because she kept dropping off to sleep and dropping her phone throughout the flight or maybe it was the 13k emails on it that were wearing her down. I had to control myself from grabbing it and going into a delete frenzy.

What did I think of Milan everyone asked, well as I landed at the wrong airport to where I needed to be I got to see lots of lovely road tunnels in the dark, IKEA and Maccy Ds but other than that and another airport and adjoining hotel I haven’t the foggiest what Milan is like. I was very glad to meet Gilly and Kacie in the Bar though once I got checked in they were very good to wait up for me, and after the awkward silence from the taxi lovely to have a good chat. I hadn’t met Kacie before but her reputation preceded her she is for reasons unknown to anyone, one of those enigmas that have had a full complete response to Melanoma treatment even though she had run out of options at one point . She joined a clinical trial a couple of years ago, that turned out to be what we now know as Keytruda or Pembro and had a very rapid full response and has now actually been able to cease treatment it’s always wonderful to meet someone with such an uplifting story, and such a lovely lady to boot.

The next morning after a lovely breakfast which Martina joined us for, it was down to business, about twenty people in total attended and to the others surprise all the patient advocates already knew each other this is the advantage of being a member of a European umbrella group such as Melanoma Patient Network Europe and it gives us a strong platform to lobby from, which is why we were there.

We were taking part in a Melanoma Advisory Board meeting along with specialist nurses who work with melanoma patients to advise a Pharma company on our needs and our views on current cross the board treatment choices. Melanoma treatment has changed significantly in the past 2-3 years with new treatment options coming from clinical trials and some being fast tracked because of amazing results. Yes the results are amazing BUT they have to be kept in context, if you had a diagnosis of advanced melanoma such as I and many others do up to a few years ago you would not be expected to live past a few months, many oncologists who worked in melanoma up to that point were even viewed as being slightly unusual by their own peers ,because why would you want to work in a field where all your patients were guaranteed to die but then Braf inhibitors and immunotherapy came along and suddenly they became the rock stars of the Clinical Oncology world. These new developments were groundbreaking and changed the outcome for thousands of patients worldwide, but stories like Kacie are still too rare and many patients die because of problems accessing drugs, and drug resistance. Pharma is a machine multi billion dollar industry but on the ground there are many good people who work within these companies and do engage with patients there are many changes that could be made no one can dispute that from trial design, trial access, pricing barriers, transparency on data, and resistance to medication but change never happens unless all parties first sit around a table in perhaps a airport hotel in somewhere like Milan.

Unfortunately straight after the meeting I had to head off for my flight home, and much to my disappointment got allocated an aisle seat so I didn’t get to see the Alps as we flew over I should have asked the guy in the suit sleeping against the window to swop with someone who has yet to lose her awe at the beauty of the world we live in from the window of a plane.


Patient Power: Gilliosia from France,Hedva from Israel,Biba from Macedonia,Martina from Germany,Kacie from Belgium and Me from Ireland