During my trip to ASCO I made contact with Chief Executive of Cancer Trials Ireland Eibhlin Mulroe through Twitter. We arranged a meeting on the Sunday and Eibhlin asked if I might do something for their Patient Advocate Advisory Group when I returned home, as it was quiet a surprise to find an Irish Patient had made the trip to the conference, she thought others might like to hear what the experience was like from the patients perspective. I had attended their first meeting in Feb this year and was impressed with the idea of a patient advocacy group being directly linked to an organisation that has 95% of Ireland’s Oncologists as members so I was honoured to be asked to address the meeting last Friday in the Gibson Hotel.
Before the Patient Group meeting got underway there was a Post ASCO presentation on whats happening in Immunotherapy. This meeting was chaired by Prof Seamus O Reilly and presentations started with a very interesting presentation by Dr. Joanne Lysaght of Trinity College Dublin who is involved in Irish research programs. Something I will follow-up on from her presentation was the idea of an Immunotherapy Course for patients to help them understand how this new treatment works something that would be welcomed by many I am sure.
There was then presentations by Pharma company medical reps for Bristol Myers Squibb, Pfizer, Celgene, and MSD these covered what their companies were doing in terms of research and trials in the developing field of Immunotherapy. Dr. Jerome Coffey of the National Cancer Control Programme highlighted some of the challenges facing Ireland in this changing landscape of treatment not least the cost which is a major concern for health authorities and government. To highlight this the latest figure for the Irish national debt was shown, a truly sobering figure, but not one Irish Cancer Patients should pay the price for with their health.
After a short break I was next up and I was as I said as nervous as someone on a First Date which is ironically filmed in the Gibson Hotel in the next room. I was given a brief outline of topic to cover but it was up to me what I spoke about for the following 15 minutes or so, and much to my surprise when I put the speech together i actually found it hard to condense my cancer story, why I got involved with Melanoma Support Ireland, MPNE, what I have been doing as an advocate and my trip to ASCO into that time space. I can’t reproduce the entire speech here so I am going to post a summary of the main points:
Kay Curtin Melanoma Support Ireland addresses meeting of PAAG Cancer Trials Ireland
I spoke about what it was like in those early confusing days to take part in a Clinical Trial after initial diagnosis:
” For almost two years I participated in the trial and felt so great-full that I had been randomised for the actual drug and not the closer monitoring arm of the trial never thinking about those that had been!”
and what it was like after ten years to find myself back in a terrifying situation:
“Unfortunately after a few weeks of rapidly decreasing health I was admitted through A&E and when my medical history was taken alarm bells once again started to ring. This time when I was asked to leave the ward to meet the consultant in another room with my husband in tow I already knew what they were going to say, I knew the news was not going to be good this time.”
I explained about Melanoma Support Ireland and what we have achieved in the last year and a half:
“The Group started with a Facebook Awareness page and a Support Group and my-self and other members contributed to the site.
I held a Melanoma Support Ireland coffee morning in my local area to get some funds in place and it was a huge success. That Bun Fund has enabled me to travel and become involved in European and global conferences something I had never imagined it has really been the icing on the cake so to speak. We have now grown in numbers to 178 members on the private support chat forum for patients and carers.”
And how I became involved as a European Melanoma Advocate:
“By the start of this year I was feeling well and decided to travel to Brussels for a conference held by Melanoma Patient Network Europe. They are an umbrella organisation for European Melanoma charities, groups, and individual Bloggers. Their aim is to educate advocates who will then return to their respective countries and put this knowledge to use to help others.”
We had many experiences to discuss on differences of Trials and treatment protocol within our own countries.”
I explained how I came to attend ASCO, what it is about, what it was like:
“ASCO is the highlight in the conference calendar for Oncologist’s, it has attendees from all over the globe. It covers every type of cancer and is where all the new ground breaking revelations are made each year from Clinical Trials. Often frustratingly information is even held back until its first big reveal at ASCO.
Just walking around ASCO is a surreal experience for a patient, when you enter the Pharma stand area which contains huge advert’s for Immunotherapy, Clinical Trials, Drugs that you might actually be currently taking with all the current stats on overall survival rates and progression free survival on display you feel like Alice when she’s falling down the rabbit hole. I wondered what their reaction would be if I said Hi, I’m Kay I’d like to sign up for that trial please if only it were that simple!!”
The role of Big Pharma:
“I’m not sure a patient could ever feel totally comfortable with that side of ASCO but Pharma is a business, I understand that and without it I wouldn’t still be here so I am very great full, and without them we wouldn’t have trials and access to new developments.
Melanoma has seen great advances I’m a great example of that but we still have too many people dying so we need fast systematic learning to save as many of our patients as possible. Good patient Centric Clinical Trials need to be fair on the patient who participates giving them the best chance to live and delivering top notch insights for the researchers.”
I explained what the clinical trial process is like from the patients perspective there were many patients present at the meeting but I was also glad to see that many of the Pharma reps and Oncologists had waited on to see what I had to say on the subject:
“However from a patient perspective joining a Clinical Trial can be based on timing and luck and for some patients unfortunately neither will go their way. It is different to standard treatment pathways but with some types of cancer it can be the most viable option available. No one joins a clinical trial thinking about becoming a Hero or the good that might come of it for others, that’s a possible bonus, your priority is staying alive for yourself and your family.
Clinical Trials can have amazing success and we have seen this recently in the treatment of Melanoma with the results from the checkmate 067 trial showing before unheard of survival rates at 3 years for stage 4 patients in such an aggressive disease, where before survival was measured in months, these clinical trials have brought great hope to many.
But of course a trial can only bring great hope if you can access the trial in the first place, and at ASCO I did do a lot of asking, Why, isn’t this trial available in Ireland?”
The effect lack of choice in trials has on patients:
“It leaves Irish patients at a disadvantage in terms of treatment options and our Oncologist’s frustrated at the system that excludes them from this exciting new research and options for their patients.
It is something that needs to be addressed as not all patients can avail of the option to travel abroad for trial participation as the current system stands. There are funding issues outside of the trial costs to be considered such as travel, accommodation and possibly hospital fees if a patient becomes unwell, that are not met by the Treatment purchase fund as it is not considered an approved treatment”
and why should Irish Patients be treated different:
“For Irish patients to have the same equal opportunities as our European neighbours is a Human right we should not find ourselves with limited or no Clinical Trial options because we choose to live in this country.
Changes can and should be implemented to attract more trial investment in Ireland after all most of the big Pharma companies involved in these new drug developments have a presence in our country already we have some of the best research facilities and clinicians why shouldn’t our patients have access to all they have to offer in clinical trials?
The world of cancer treatment is going through a sea-change at the moment, Irish patients deserve the chance to be a part of this new era.
In Melanoma alone as new sub groups of the disease and further genomic testing methods are discovered new clinical trials and perszionalised (a buzz word from ASCO) medicine will emerge with greater success and less adverse effects, and I as an Irish patient want to be given the opportunity to avail of these developments, and so do others.”
and in conclusion:
“I was delighted to meet members of Cancer Trials Ireland at ASCO lobbying for new trials for Irish Patients, it’s a complex problem but one that must be addressed.
1 in 3 people are expected to become a Cancer patient in Ireland in the future. There is great hope for these patients if we can find solutions to these problems and as my little kitchen calendar reminded me recently when I was awaiting scan results,
Hope never abandons you, you abandon it, so I remain very hopeful for the future!”