What does that mean when you see a headline like that? Does it prick your interest a little more or is it an over-used term?
Well if like me you’re an advanced melanoma skin cancer patient living in Ireland, or a family member of a patient then today is a truly remarkable day.
Let me go back a little in time to put it into a personal context how important today actually is to someone like me.
In February 2015 I found myself in the horrendous position of progressing from stage 2 to stage 4 malignant melanoma. I was admitted to hospital in what can only be described as pitiful condition. This had crept up on me in only the short space of six weeks. A chest infection that wouldn’t shift, my hip locking up, rapid weight loss, excruciating abdominal pain finally made a second trip to A & E and emergency admission. The prognosis wasn’t good, no more that could be done surgically because the cancer had spread so extensively. I was offered a life-line of targeted therapy one drug paid for by the HSE the other provided on compassionate grounds by the Pharma company.
Amazingly I started to see an improvement almost immediately but I knew that this was in so far as any-one could say with any certainty a reprieve. The mutation that the drugs were targeting would in all probability evolve and I would become resistant to treatment. At that stage my options would be very limited, the only other drug available was Ipi mono and I didn’t have high hopes for its effectiveness for me.
I became aware that there was another option from contacts I made through on-line patient forums. I met Alice who had recently had resistance to the drugs I was now taking. She had managed through sheer tenacity to secure a place for treatment in Texas, and she left Ireland going into unknown waters. It was a matter of life or death to receive the new treatment of Ipi combined with Nivolumab. I was hospitalised in June severe reaction to my treatment. During that week myself and Alice were in constant contact messaging forwards and back. Could I get to Texas too, it was extremely doubtful I had no health insurance and no way of financing such a trip. A scan though showed I was making good progress so I was at least released home with a little confidence things would be OK for the moment until I could come up with a plan. For Alice because of the ability to gain access she is today happy and healthy, cancer free with over two years now married to her then fiancee and just recently given birth to a sweet baby girl.
I continued to make progress throughout that year and by the following March 16 there was no measurable disease present in my scans. I attended a conference in Brussels that March and again all the precariousness of my situation became apparent, and how important it was for me and other Irish Patients like me to have security of access to treatment especially the new and innovative treatments like Ipi/Nivo. It was around this time the NCPE (National Centre for Pharmcoeconomics) rejected a recommendation for Nivo mono on cost.
Fast forward to that June and I attended ASCO in Chicago it became glaringly apparent that even though Pembro a similar drug to Nivo had been approved by then in Ireland, we still desperately needed access to the combination treatment. I got upset after some of the sessions, to sit there and listen to the groundbreaking results that were being announced for this treatment and knowing that a year later from when I had first heard of it we still had no opportunity inside Ireland to have the treatment was devastating.
I ran into Prof Crown even though there were about 40k people at the conference and he really put it to me that the patients are the ones who needed to be shouting louder and be more organised about campaigning for these new drugs. So when I got home as luck would have it the NCPE were accepting submissions for the approval of Ipi/Nivo for treatment of advanced Melanoma. I wasn’t completely sure what I was letting myself in for but I knew I had to do something because doing nothing wasn’t an option. I spent the next month putting together a submission on behalf of Melanoma Support Ireland, some weren’t sure it was even the right way to go and we lost people along the way. It was personally very difficult at times to keep going, it ate into precious family time and when your stage 4 all time is precious!!
I attended meeting after meeting just to gain extra knowledge, you could say I was obsessive about this approval, but I had little choice this could also mean life or death for me when I progress again. In November 16 the heartbreaking news came that it would not be approved, I was almost depleted of energy to fight on. I went to a workshop in Sweden where I met with my good friends from MPNE (melanoma patient network europe) it was only with their support I decided to stay involved and keep going, I could see how important this was going to be for all Irish patients it was never just going to be about me personally. We also had another submission that was for one of the drugs I was still receiving on compassionate grounds to fight for it hadn’t been approved either and is still in negotiation at present.
The outlook was bleak, Nivo mono rejected and no more referrals for new patients for compassionate access since early September 16, no approval of Ipi/nivo and no approval of the two other drugs the Mek inhibitors, Trametinib and Cobimetinib. Irish patients were at a huge disadvantage to our european neighbours even the UK had fast tracked approval, I happened to be there at a melanoma conference in June 16 on the day it was approved I saw the relief on the patient’s faces the chance to try to survive, was now a reality for them. I was so happy for my British friends but for us as I said the situation looked bleak at this side of the Irish Sea in our hope for approval.
I knew that negotiations were going on behind the scenes, but it was too slow so earlier this year I started a petition for the approvals it had a really good response but any time I sent it to Department of health or HSE it would be the same standard reply to the situation, it felt like being stuck in heavy mud and for some it was actually quicksand because these approvals weren’t coming and people needed the drugs now patients with progressive cancer can’t just decide I’ll wait a few months and see what happens they must have treatment there and then with what’s available even if they know there is something that is available somewhere else that they can’t access that might be better.
I was dreading every scan I had incase it meant progression, and I had to make a new treatment choice, its hard to describe what that situation is like especially in those circumstances, petrified walking into see your consultant in case today is the time everything changes again…….. We had even looked into the option of emigrating again as a family, or prehaps me going on my own to live abroad just so I could get access if I needed it.
The situation with approvals was raised in the Dail on a number of occasions because it wasn’t only melanoma patients waiting now it was hopefully going to get approval as a monotherapy for more indications such as kidney cancer and Hodgkin’s lymphoma, but also a type of lung cancer.
Late this summer I got a hint that maybe progress was being made and that at last all hope wasn’t lost, it had gotten a favourable recommendation at last but now the issue would be Who’s going to pay? the wrangling continued between the department of health and the HSE and it was once again stuck, this time with approval but no access.
I was hopeful though that we were finally a lot closer than at any point over the last two and a half years to being able to walk into a hospital and have the treatment.
Finally today came the official announcement that as of now it is available to be prescribed, it is ground-breaking, it is game changing its a huge moment for Irish patients. I am mindful of those that have not made it to today, some I knew personally through our group, many I never knew.
The decisions being made are always difficult it is an emotive subject, the payers are in their words looking after the purse-strings for everyone and the pot isn’t bottomless. It is certain that the whole system for approval is fraught with difficulty, from my position I have seen into both sides of the argument.
It is hard to watch news reports of corruption and wasteful spending on quangos and water meters, newly refurbished offices for officials, big pension payouts for former TD’s when you know how desperately patients need these treatment options. We hear constantly about accountability, but see little. For me as a patient without my advocacy cap on I don’t care about those excuses I just want access right now, I deserve the chance to survive. When I look at the bigger picture as a patient advocate I see huge problems, in our society at the moment and we are just another one in a long list of things for government to deal with, we are in a mess and it’s not just me or other cancer patients that are suffering because of it, Ireland is not a poor country, we are just very poor when it comes to managing our resources, be it in health or housing ordinary working class people suffer.
I do believe though it is up to all of us as citizens of this country to stand up for our beliefs, fight for what is necessary and engage with the organisations making the decisions that affect us, unless we unite even in something like patient forum, and combine our efforts, lobby for change we will remain stuck forever in heavy mud unable to go forwards to something better for all our futures……….
A special word of thanks to all the patients who took part in surveys and submitted and trusted their stories to me for the approval submission process without their help it would not have been possible I hope our submission did make a difference, to MPNE for always giving me guidance and hope even on the darkest of days, to Ipossi for their support of Irish patient advocates, my consultant Dr Derek Power for his support throughout the last two years and most of all for my family listening to me rage against the system, and for putting up with me not paying full attention because I was so distracted by this cause hopefully now we will have a bit more precious free time together and a greater hope for the future……………