 Good afternoon everybody my name is Barry Kalfour and I'm the director of research here at the IIA in Dublin. It's a great pleasure to welcome those of you who are here in person at our headquarters and indeed those of you who are currently joining online, finding your seats as Zoom fires up. I have a very enjoyable and short duty today. I'm welcoming you to our event on the role of the EU in promoting better cancer care and outcomes which is the last of our series of three, this current work that we've done at Janssen Sciences Ireland. I just want to express my sincere gratitude to Janssen to our colleagues Mark Hanovan and Fergus and others who we work closely with in pulling these events together. It's been a real pleasure and I know today will be no exception. I have the great pleasure of handing over to you national treasures in Ireland so much but if we did Eileen Dunn would certainly be one requiring almost no introduction sorry Eileen. Eileen retired from RT but many other things as well it's a real pleasure Eileen is going to be in the chair today so I'm going to hand you the mic. Thanks Barry and good afternoon everyone whether you're here with us in person or online to welcome our speakers as well I'll introduce them all to you presently but to say that I'm very pleased to welcome you to today's IIA event the third as Barry says and the final installment in the Ireland and the EU Health Union series previous sessions looked at opportunities to improve Irish health care and the role that the EU could play in improving care for patients with rare diseases here and in the EU but today as Barry says we're going to focus on the role of the EU in promoting better cancer care and outcomes across the union through various initiatives contained within the EU's beating cancer plan because as part of that health union the EU has prioritized cancer care we'll also be looking at how Ireland has fared within that plan just some housekeeping each of our speakers today will speak to us for about seven to ten minutes we'll then go to a Q&A with our audience we'd like you you can get your questions into us online if you wish or you can ask of course in person here and as you're asking a question we'd ask you each to identify yourselves a reminder they both the presentations and the Q&A session will be on the record and also please free to join feel free to join the discussion on X you can post on X I don't think he has quite come up with a verb for to replace tweet yet but you can post on X using the handle at IIEA so our panel today includes Averill Power who's CEO of the Irish Cancer Society Professor Ray McDermott is next consultant medical oncologist Senator Annie Hoey from Drawda Barry Andrews has joined us a member of the European Parliament and Dr Thoris and Gisika who's general manager commercial business Janssen Sciences in Ireland and we're very happy to have you all here with us today Averill is going to speak first she's been chief executive of the Irish Cancer Society since January 2018 she has over 15 years leadership policymaking and campaign experience having served as CEO of the asthma society as an elected member of Shannon Aaron and a policy advisor in several government departments she holds a degree in business including non-profit management from Trinity and was president of Trinity Students Union in 2001 and two she also has a diploma in law from the King's Inns ladies gentlemen please welcome Averill power thanks very much Eileen and I'm delighted to have the opportunity to say on behalf of the Irish Cancer Society to outline how a future where no one dies of cancer is within our reach and what needs to happen both at a national level and a European level to deliver that every three minutes someone in Ireland hears the words you've got cancer I know that many of you have probably heard those words personally or been given that news about someone you love your spouse your parent your close friend or even your child as a result you'll know all too well the impact the cancer has the fear and uncertainty that it brings the physical emotional and financial burden it imposes the enormous grief when it takes the life of a loved one too soon and the impact on those who are fortunate to survive the disease but struggle with lasting effects like infertility incontinence and fatigue there isn't a family in Ireland that hasn't already been affected by cancer and with one in two of us now expected to get the disease within our lifetime that means that half of the people in this room and on joining us online today will get a cancer diagnosis personally at some time in the future if you haven't already when you do you deserve the best possible chance both of surviving the disease and of having a good quality of life after us and I think the the good news is that cancer survival has increased significantly in Ireland in recent decades you know 35 years ago only three out of 10 Irish people survived the cancer diagnosis today six in 10 do and nine out of 10 people now survive breast prostate and ticked it the testicular cancer which is incredible progress in a relatively short space of time and and indeed the pace of scientific and medical progress that we have now is so remarkable that I genuinely believe and I know Ray sees this one both his work here and I'm sure international and really inspiring presentations and international conferences that like the improvements that we're making now are so remarkable the potential is so huge that the Irish Cancer Society believes that a future where no one dies from cancer is within our grasp if we give it if we give cancer the political priority and the investment that it needs both in Ireland and across the globe some cancers will be preventable just as cervical cancer largely is now with the HPV vaccine um others will be much more easily cured with better um more personalized and less toxic treatments than we have now and others there will be manageable chronic illnesses that will people will live with for a long time um after diagnosis would have minimal impact on their quality of life and our goal at the Irish Cancer Society and I'm sure the ambition of of everybody joining us today is to bring that day forward um so that as soon as possible bring forward the day when nobody in Ireland has their life tragically cut short by cancer and when everybody who survives the disease has the access to the support that they need to live life to the full and we're getting there but we're not getting there fast enough while nine out of 10 Irish people now survive breast prostate and testicular cancer only two in ten survive long pancreatic or brain cancer people from lower socioeconomic groups are still far more likely I'm both to get and to die from cancer in Ireland than those for on higher incomes and many survivors still don't have the support that they need to be able to cope with the lasting physical emotional and financial burden that the disease imposes comparative European data also shows that Ireland still has a long way to go to catch up on the best performing countries in the European Union earlier this year the European Cancer Inequality Registry published a cancer country profile for Ireland which is rich in data I see and he has it in front of her here as well which is rich in data both on how we're getting on in Ireland and how we compare across overall survival in specific cancers across a wide range of different cancer outcomes with other European countries and that showed that in 2019 which is the latest comparative data that they had for the report Ireland's cancer mortality rate was the third highest of all of the Western European countries included in that survey and that our mortality rate was also considerably higher than that of leading countries like Finland, Sweden and Spain across all 29 EA countries included we were slightly higher than average in terms of overall cancer mortality but that is not where any of us want to be that's not where you want to be when you hear those words if you hear those words you've got cancer it's not where you want to be if your loved one is given that news average is not where we aspire to be and not where we can where we can be and so even before COVID-19 that's 2019 data Ireland was already lagging behind our peers in terms of cancer survival we're also behind today in a number of other key areas like e-health access to new medicines access to world-class ways of delivering cancer care through comprehensive cancer centers which are common in the rest of Western Europe in particular and support for cancer survivors we also face major challenges as you know in attracting and retaining healthcare professionals in the Irish healthcare system and oncology system and the Irish research environment so we have a lot of work to do unfortunately firstly to deliver cancer outcomes that are on a pair with the best performing countries and where they are right now and to ensure that all Irish cancer patients regardless their backgrounds their socioeconomic status get early access to the benefits of the breakthroughs that are coming through all the time and that we will increasingly see into the future this will only happen with serious commitment from the Irish government to properly prioritizing and properly resourcing the full delivery of our national cancer strategy the Irish cancer idea is deeply disappointed that that has not been the case in recent years the current strategy was published in 2017 and has only received dedicated funding in two of the seven national budgets introduced since then so as a result the national cancer program has not been able to deliver many of the key improvements in cancer prevention detection treatment and survivorship set out in the strategy and despite decades of you know significant improvements that I mentioned prior to that in the period up to 2018-2019 in cancer survival we've stalled progress has been really slow in recent years due to that lack of investment the Irish cancer society hopes in turning to the Europe's beating cancer plan the Irish cancer society hopes that the EU's beating cancer plan will help to accelerate the price of improvement in Ireland both by putting pressure on our national government to make the most of what we already know about cancer and how to deliver world-class cancer outcomes to learn from the better performing countries in Europe and also by improving our knowledge to the four billion euro investment under the plan in cancer research and service innovation the plan is already showing some promise and for Irish people affected by cancer in Ireland Irish researchers are already working in collaboration with EU counterparts on large EU funded research projects pooling expertise to deliver faster and bigger breakthroughs and then they cut alone Irish conditions have funded have received part funding from the EU to pilot screening programs here for lung and gastric cancers and the requirements under the plan that each member state set up an EU cancer mission hub is also helping efforts to secure greater collaboration and cooperation between key players in Ireland such as government bodies hospitals academic institutions NGOs pharma and other industry partners the Irish cancer study hopes that the priority given to cancer data and e-health in the EU beating cancer plan will also result in national level improvements timely access to data intelligence is essential to better understand what's happening in cancer services today and why it's crucial for smart decision making and proper allocation of limited resources and it's essential for holding government to account on progress on the national cancer strategy cancer patients data access to their own data as has been done in other countries like Estonia and Sweden can also help them better manage their health their own health and despite progress some progress made in Ireland and developing a national cancer information system Ireland is far behind where we need to be and far behind frankly where some countries were 10 15 years ago in terms of access to data and digital health the EU beating cancer plan has prioritized this area and improving access to cancer data to flagship initiatives like the European cancer information system and the European cancer inequalities registry and again hopefully this pressure through the one having that data to be able to place and compare at a European level will put pressure on our own authorities to invest in collecting and analyzing data on national level and we also hope that the emphasis on e-health in the beating cancer plan will result in a greater national focus on unleashing the potential of digital technologies to improve full access to and quality of health care in Ireland digital technologies can have the potential to just deliver incredible innovation in how we access health care they can help people reduce their own cancer risk through wearables and other technologies improve they can improve cancer screening and detection enhance clinical decision making and improve access to care in the community through initiatives such as remote monitoring and they can also help us overcome really acute work price shortages that we're already experiencing now and increasingly see into the future as shortage of health care professionals the Irish government most invest in and prioritize e-health urgently to ensure that we can benefit here in Ireland from the potential of advances happening in this area at the EU level the European beating cancer plan also highlights the essential role of comprehensive cancer centers as drivers of improvements in cancer outcomes and this again will help people pressure on our government to deliver the equipment in the 2017 national cancer strategy to establish at least one such center in Ireland so to conclude and as I said at the start one in two of us will get cancer in our lifetime when we do we deserve the best possible chance both of surviving the disease and having a good quality of life afterwards and while Ireland's cancer outcomes improve considerably in the period up to 2018 2019 progress has slowed unfortunately since then due to a lack of investment in recent years and the Irish cancer society hopes that the EU beating cancer plan can help change that through investment and collaboration at a European level and also by putting pressure on national governments to deliver a future where no one dies from cancer is within our reach but it will take both national commitments and the might of the EU and other international institutions to deliver it thank you. Avalparr thank you our next guest is Professor Ray McDermott he commenced his training in medical oncology at the matter hospital in Dublin he then went on to the Institute Curie in Paris where he completed a PhD in tumor immunology and having completed his clinical training at the Fox Chase Cancer Center in Philadelphia he returned to Ireland in 2004 and took up a post as consultant medical oncologist at the Adelaide Mead and National Children's Hospital in Tallah under the auspices of the national cancer control program and the establishment of the Centers of Excellence Dr McDermott's public hospital commitment was split between Tallah and St Vincent's University Hospital where he pursues his interest in genitourinary and gastrointestinal cancers he's the national cancer control program leader in guideline development for prostate cancer and he sits on the new drug evaluation committee across all diseases he's also formalized many international collaborations on cancer over the years so as well placed to speak to what we're speaking about today Professor Ray McDermott. Thanks Eileen and thanks for asking me to speak today I was interested in Avalparr's you know her introduction about having a future without cancer for me with the boots on the ground that seems a long way away although you know obviously I share her view in wishing that was the case but when I go into the hospital and I do my ward rounds it does seem like it's a far away away at the moment still I've a great interest in making sure that Ireland is up at the top of where we need to be in terms of cancer treatment prevention and diagnosis as Avalparr said I don't want to repeat look the cancer is becoming more common as our population ages it's estimated that the number of patients with cancer diagnosis will double between now and 2045 that's unless Avalparr plan kicks in of course which we all hope it will but in the meantime we have to plan for having an aging population the overall rate of cancer is not increasing it's just that our population is getting older and clearly that's going to have implications for what is already a very stretched healthcare service and thinking about you know people say they try is there any cure for cancer you know cancer is a series of different diseases it's not one disease it's a complex series of diseases and as Avalparr mentioned in some diseases we're doing very well in prostate cancer you know 90% of people who are diagnosed with it are cured breast cancer something similar lung cancer lags behind and colon cancer is somewhere in the middle overall though I think about two-thirds of people who are diagnosed with cancer can expect to be cured which is you know still very good not where we would want to be but still better than it used to be and the one thing that will lead to is an increased number of survivors in the population with sequelae of their cancer whether that be as Avalparr mentioned infertility and incontinence you know different issues related to the treatment that I give them potentially like peripheral neuropathy different things that happen to patients along their cancer journey and certainly we have to make allowances for that whenever we're planning for cancer in the future as well but things some things have improved I don't want to be negative definitely the advent of the NCCP we're on our third cancer strategy you know the NCCP has led to centralization of many surgeries so for example I work in St. Vincent's now there are two centers in Ireland that operate where operations for pancreas cancer take place previously that would have been you know eight to ten there are a number of cancer centers where breast cancer can be operated on similarly rectal cancer so that all that esophageal that's all very positive when it comes to radiation treatment there has been a rollout there was a new center open and go away there a couple of weeks ago that completes the network that was envisaged in Donal Hollywood's plan unfortunately as always with these things it's never big enough to cope with the demand that's there and one thing that's really good in cancer that we always see is things are always changing so you you plan for x amount of treatments in y diseases and as as cancer treatment changes and as we go to our meetings that as Thoris and I were at ESMO last week in Madrid you come back from that and suddenly the paradigm has changed you're now no longer saying oh this is what we're doing now it's we have to do that so it's a very dynamic process and and that is part of the difficulty I suppose in in the planning process when it comes to surgery I've mentioned that a lot of that's been centralized what I do chemotherapy and increasingly now things like immunotherapy and newer drugs like that and that has all been very much standardized by through the NCCP so that if you're getting your care in Dublin in Donegal in Sligo the same standards in terms of administration and and the protocols that use it should be the same so no patients should lose out by having by getting their treatment closed on which is of course what we want so there definitely have been improvements there have been more consult when I came back to Ireland there was probably you know 15 medical oncologists in the country now there are 70 so that's that's a big improvement and some things like that we have to hail and unfortunately it's it's it's always as I said a dynamic process and one of the things that I as a medical oncologist love to see is when I go to these meetings in Madrid they present what's the latest so we know Vicky feeling fought hard to get immunotherapy for her cervical cancer the reality is immunotherapy works in about 10% of patients with cervical cancer there are but there are better treatments out there and there are better treatments coming so the latest types of treatment are you combine a drug that will take the an antibody which will take the drug to where you want it to be rather than just giving chemotherapy into the vein and blitzing everything your hair falls out you know what your skin turns a different color now what happens is you you you attach the chemotherapy or the tart to an antibody which directly goes to where the cancer is and specifically targets that area so so we're getting better and better at targeting where the cancer is and hopefully minimizing some of those other effects that we didn't want to see that and the patients always had to suffer of course that comes with the cost so though these new developments they are what they cost money and the development costs but also when it comes to making them available for our patients that is one area that is a problem because Ireland unfortunately has is now lagging behind in terms of our approval for new drugs and as someone who treats patients beats patients every day and these days patients know what's out there it's not like when I started off doing medical oncology then I'd be telling patients what is out there they're now coming in they've done their research and they know what's out there and then I'm saying to them look when I'm sorry you live in Ireland we can't do this unfortunately it's not available so obviously that's a great source of frustration for me the way that the drug approvals process is the EMEA so gives an approval for a certain drug and then from then on it comes down to the country to negotiate the price look look I'm not I was on that drug approval committee I'm no longer on it but and I understand that there is a certain amount there's a limit in the amount that we can pay for these drugs and I'm not suggesting that we break the budget but when we hear that there's no additional budget for next year for new drugs that to me is a real heart-sync moment because how are we going to offer our patients these access to these treatments if we can't pay for any new drugs and the and one thing I'm sure you some of you may have seen that we had we had a row in the newspaper we had to go public with it earlier on this year whereby now all the insurers will agree if you have health insurer that they will cover these drugs once they are they're approved by the EMEA so that's great but it's only for a certain part of the population that wasn't the point of what we were doing there that patient that I went to the papers with was about trying to get her when I'm sitting in front of a patient I want them to get access to the best treatment for them so that was about her and thankfully that worked but for all the other patients who don't have health insurance we need equity I don't want no oncologist wants a two-tier system whereby as Mary Harney would say you turn right if you have health insurance and you turn left if you don't and you get different treatment nobody wants that we certainly don't want that we want the same access for all of our patients and I know Thorsten is going to talk about some of the mechanisms potentially how Ireland could afford this but I know that when it comes to access we're down the bottom we're just with Portugal in the western European countries in terms of our access and I know that countries like Denmark that are similar size to us do better and potentially with this new EU mission on cancer is that is that a way that we could potentially look at different models for funding our cancer drugs I would hope so look these things are not cheap and I know I was reading the I looked up the New York Times yesterday there's now a cure for sickle cell disease but the the cost of it is it's with this CRISPR gene technique would cost over a million dollars for the for one treatment so obviously that's a big figure if you think about the cost of a hospitalization with sickle cell crisis it wouldn't be long getting up to a million but so you have to balance those things out again it's not an easy equation not one that I can necessarily contribute to but one that I know is the source of great frustration for our patients potentially one way of getting around some of the cost is by clinical trials and the clinical need of cancer trials Ireland and we try in the cancer strategy the third one that I will mention the the target for cancer patients on trials was six percent we're about two percent if we want to get up to six percent we need more investment in clinical trials you get access to drugs on clinical trials generally those drugs are provided for free and actually we save the exchequer money by putting paper people on to clinical trials so that is certainly one way that we should prioritize I would have thought for the future so look I think my I think I've made my point the other thing that the other last point I will make is that if you look at government strategies like the UK government we all know that what got us out of COVID was Pfizer vaccine and biotech and and Moderna with Pfizer basically the UK government has now those vaccines are coming into cancer treatment and the UK government has made an agreement with both biotech and Moderna to to enroll clinical trials throughout the UK over the next number of years why can't Ireland do something like that why can't we go to these companies and say look we're going to can we copy the UK model can we have a set target for the number of patients we will put on these vaccine trials over the and we have to pay but ultimately we will save because those vaccines are used in the adjuvant setting when someone's had surgery and we're looking to prevent the cancer from going back that's when vaccines will work and that that's the kind of thing that we should be doing in my view thank you well as as Averill said at the beginning one in two of us will possibly face a cancer diagnosis in our lifetime but even if we don't we've all been touched by cancer at some point in our lives as indeed has our next guest Annie Hoey who cared for her father who had cancer in the last over the last couple of years an act of student life was what led her to her seat in the Shannon and where she works today to affect change through diversity inclusion equality and acceptance from drawda she first attained a bachelor of arts drama and theater studies before pursuing a master of arts and then in 2013 undertook a postgraduate course in women's studies throughout her busy student life she progressed through key representative roles within the usi body politic and as chair of the lgbt society she was voted college society person of the year for her contribution to amnesty she began her public life as a counselor in betty's town in county mead before joining the shannad in 2020 and from the outset she has lobbied on issues such as abortion health care marriage equality transphobia biphobia and homophobia she's the first female parliamentarian to come out as bisexual and the second woman to come out in the eructus or the houses of parliament senator annie hoey thanks very much so that's a real like fun tour to the past there i thought yeah i did all those things that's nice and thank you so much for having me here today so i suppose i'm here from kind of two hats the the one which is the politic one and i i i sit on the george rach's commission health and the subcommission mental health and most of the old party group on cancer and but i also come with a very personal perspective in terms of my own father who not long after our election at the shannad we got a cancer diagnosis and it was a very short illness fraught with all sorts of complications so i won't go too much into the personal patient experience but there was you know it was during covid and there was a lot of difficulties at that time the care he got you know was what it was but there was you know there's a lot of people for whom there was a diagnosis during that period who i think are possibly still hurting are still reeling from the consequence of that i'm not sure if we've even fully got to grips with some of that and but it's an area that i'm just whenever i was talking about you know like the e-health and the the electronic records we want to have a bit of a gloomy feeling go back and watch the joint rockets committee on health when we discussed the e-health records and where we were at in ireland and i think a lot of our mouths were our jaws were on the floor actually at some of the responses we were getting there like we haven't got funding for this we're cutting doing that we're not even looking at the other and we were like what what how you know it was it was grim it was a grim session and not that all sessions in lester house and the committees are grim but it was it was difficult listening and both from a political perspective because we know that this is the right thing to do in terms of moving to that e-health that data pace piece but also from a very personal perspective you know i was driving from hospitals you know i had to drive from one hospital to another because there was no records of my dad's care and i had to go and effectively wrestle the records from one hospital to drive them to another hospital and so we could try and follow him around with what his care was because there wasn't a care piece but you know there was a just a bit of a breakdown of communication at the time and that even from you know i could drive my mom couldn't drive my sister couldn't you know even that piece that we had to do during that period during covid where people were being stopped on the roads as to why they were going and you know holding a record of someone being like i gotta gotta get this to draw that it's very important you know bizarre kind of situation so when and so i'm really would be really interested to see how that european piece could possibly influence our movement towards that that e-records that e-health and i know there's there's there's there's potential for problems with it but that data piece i think is going to be so important but also just that the the ease and the piece that that could possibly give patients you know my dad couldn't do the driving because he was in another hospital so i went and did it and that's a huge strain that people don't need at that time driving records from one place to the other so i just i'm really hopeful actually that and this that the kind of there's EU leadership on this that will filter down and sometimes we looked at the EU to filter down to us and sometimes we storm out on our own but i think this is a real opportunity i hope to kind of know just where we need to be with that and i'm particularly interested as well when my own dad's cancer was lung cancer wasn't a vaccine preventable cancer you know and reading up on the documentation around this you know plan around these vaccine preventable cancers in europe and particularly obviously as a woman i'm a young woman all of us know of vikvina laura brennan and i am surprised at how many women my age uh under the age of 35 who i know who have had cervical cancer in their 20s you know so i think there's a lot of um women a lot of family members who are i think see the real potential in that like to me it's an an incredible thing that there could be a whole generation of people girls and boys for whom that cancer could be eradicated like that's an incredible opportunity so i'm really excited though and i see like that european push but then obviously when you see the differential between where some countries are up at 90 percent of HPV vaccine then other countries are much lower and we uh i think we will also from covid will feel the repercussions of this misinformation and the the vaccine kind of scaring and again i i hear i've had like really interesting like rouse with women my age was i like well i don't think i get my daughter this fictional daughter don't even have children yet i'm like how can you like how can you comprehend that they're like oh well you know i just heard this that and the other like and and that's a funny place and they wouldn't have said that a couple of years ago and i'm you know i'm i don't know where we're at in terms of data gathering and stuff and i think they'll possibly take a couple of years for the impact of covid um i don't know if there's any european studies on that but the impact of that covid misinformation around vaccines is that going to have a knock-on effect on that plan to try and and deal with vaccine preventable cancers you know is there going to be and i'll be very interested to see whether whether there's going to be EU-led data on that or whether individual countries will do that themselves and and then in terms of the the preventable or certainly screenable cancers and this is something that you know everyone i've talked about and what i've talked about the health committee around the screening piece so obviously we have screening for breast cancer, cervical cancer, colorectal cancers, bulk of certain cancers and an area again because it's very personal to me is around lung cancer so i know you know there have been trials over in the uk we'd like to mention uk in a new event i should get in over that quickly and you know and there have been you know trials there in terms of those low socioeconomic areas or at risk people i mean it was written on paper potentially that my dad could have developed that lung cancer you know and that's no no judgment on anything there was just that was just his age lifestyle and all these other various things and i remember he was really upset because he gave up smoking very early on the kind of at the early stages of people giving up smoking and you know and i think that really you know upset both him and i think he's like but i gave it up like i did what i was supposed to do and i'm very much of the opinion it was caught very very late and it was only caught because he was in for something else and i think there's particularly lung cancer and men of that age you know it's up to 20-25% get caught because of something else there in A&E over this that and there's a scan you know and that's how it was found out and we would never have known otherwise and i don't think it needs to be that way and he didn't have to suffer that way and our family didn't have to suffer that way so that screening piece you know we're learning from the uk i know there's trials being brought in here in ireland and i think that's going to be so important that that sharing of that information you know that target screening and when i know there's thoughts around oh screening it costs this much and is it all that valuable and all this that and the other and obviously i would turn around and say well my dad would have been a prime candidate for that screening five years beforehand a couple years beforehand and potentially what would have happened to our family wouldn't have happened and the last thing i might just very briefly talk about and again it's a little bit around that experience is that you know so obviously there's this huge big funding there in the EU and investment into into that research piece number our party spoke first and on further and higher education so i'm really interested in that research we had some really interesting conversations in the joint or the all party group on cancer around these centres of excellence and like how that's going to work and and where that funding going to come from you know and we we've always seen really good collaboration from an academic perspective and the academics go off into all these cross country linking up and doing all of these things and and i would assume that obviously part of that that european piece now with that you know i know the enormous increase in funding at the european level it was 20 million to four you know unfathomable increase in funding towards cancer care that that filters down not only into that that research piece but also how people get their care so in ireland and anyone who's ever had a someone who has suffered from cancer whether they they passed on or not you know access to that hospice care and that piece of care there was a point where someone had a conversation with us about moving my dad to new york for his last couple of weeks and not to get all six countries about it but for the purpose of that conversation i was like that's another country like we're not moving him to another country because that's the nearest place he can get care like we're not going to do that my mum doesn't drive my sister just had a baby my other sister didn't drive and i'd actually just had an accident there was no way we could have even gotten to him in another country for his care and like that's not where we need to be in ireland where a doctor is sitting down with a family member to be like we don't have the facilities in this hospital and the nearest hospital to you is for all intents and purpose in another country that is not where our care needs to be in ireland and it's not even in the EU anyway so it was particularly egregious that that was the conversation so you know there's that research piece but also like we're still so far i think behind in that facilities piece that hospice care that step down care that care at home we all know that the numbers around getting home care and all of those things and i know there's been injections of funding here and there but we're not where we need to be and you know very much people we rely on the cancer society to provide that care for our family members when i think that care should be coming from a state level should be coming from a government level it should be at a cross EU level but not at the cross EU level that we're sending people to other countries it should be you know everyone should be able to get the care that they need in their own country and in their own county near to where they live and when they need it and not be having any sort of conversations we have the social capital and the political capital to fight that and to get them the care that he needed at home not everyone has you know this that another person's number not everyone has someone who can do that and people's care should not be reliant on geography who has the loudest mouth in the family and and you know just being able to negotiate you shouldn't have to negotiate cancer care and i would be hopeful that at some point not only on our on our journey to eradicating cancer that we also eradicate that people get care based on their negotiation skills their political skills their social capital that's not how we should be providing care so we when we talk about a two tier health system not only do we have an insurance you know private insurance in the public we have a health system where people who have the capital to be able to negotiate care compared to people who don't have the capital be able to do that and that's another part of our our health system that i just don't think we're really getting to grips with and i'm hopeful that there's a bit of a european project around bringing everyone up to that base level of care so i'll i'll end on that somewhat not gloomy note but i'm very optimistic for on the journey of eradicating cancer we also eradicate the inequalities in terms of who actually gets the care that they need and it's as i said shouldn't be based on who has a family member who can shout the loudest that's not a good base of care i think okay good afternoon everybody it's great to be here it's my first time back here since i was director general here for a very short time i'm so delighted to be invited back i'd like to be back to see familiar faces as well and and to discuss an issue of of critical importance just on a personal scale we talk about how everyone's touched by it i was very sort of brushed barely by cancer in that i've had various basal cell carcinomas whipped out over the years including a quite lurid scar there you can see which looks semi-heroic but i there's so many people are affected in this way and it's not really you know a very serious issue for me but it's it just illustrates you know how it touches so many people and i think there's a much greater awareness now about the dangers of you know uv radiation people trying to take more much more care care that i didn't take when i was a teenager and in my 20s when awareness wasn't as as good as it is now and the care that's taken by people so since i became an MEP in 2020 i joined the MEPs against cancer group of whom there are about 120 MEPs from across the member states including five irish MEPs and i've been very struck by the degree to which the cancer lobby has been successful in its advocacy in putting cancer at the centre of european policy development particularly in the centre of european health policy so the the the advantage in some way of the pandemic is that it put EU health in at a much more central position than it had been the policy areas it's covered by DG Santé which is very much a backwater if i may say before the pandemic from a point of view of policy development but it is now much much more in the centre of what the european union has has done so the president of the commission or slav underline in our state of the union in 2020 decided that we're going to push forward the idea of a european health union and the beating cancer strategy is an element of the evolution of the european health union but what we learned from the pandemic is that while health is a limited competence of the european union we could see how so much more was able to be done at a european level particularly the procurement and distribution of vaccines which is of enormous benefit to smaller member states like Ireland but also the the role that the european medicines agency had in pushing the approval of the vaccine the development of HERA which is being really really important and i think the digital covid certificate we're in the most extraordinarily quick legislative procedures which allowed the european tourism industry to get going again so we were able to see across and of course the european centre for disease control played such a critical role in monitoring and surveillance of the of the of the pandemic so we saw for the first time what europe could actually do in the health area another development that occurred early in this mandate was the establishment of a special european parliament committee on beating cancer which is known as becca and it it sat for two years and it there were hearings from experts from from clinicians from patient groups and from the pharmaceutical industry and they produced a report which signposted a lot of what is in the beating cancer strategy and it is exceptional for a european parliament special committee to be set up this very rarely happens there are there's one now on the question of the pegasus inquiry to spyware i was on one which is around foreign interference in democratic institutions known as the inga committee but there was a specific special european parliament committee on cancer care which is quite an extraordinary thing and that reported in 2021 and i want to remember one of my colleagues uh verinik trillet lenoir who is a professor uh in uh of cancer care and herself succumbs to cancer during the summer in 2023 so she was an m e p colleague who was co-chair of the m e p's against cancer and was rapporteur on the becca committee report which published in in 2021 um so the beating cancer strategy itself we've heard reference to it and i think just drawing on what avril said i think two of the strut you know there are 10 flagship initiatives in the beating cancer strategy people are familiar with various multiple action points around it but i think the two areas where we really have we can draw value from the beating cancer strategy is one is the data issue and i i amy was making the point about dragging records from one area to another and it i had a flashback to my time as minister for children and in the area of child protection records of child protection are held in the same way paper records in different health areas across the country and unfortunately if a vulnerable family with child protection issues moves from one area to the other it's not always the case that the records follow them so the absence of that uh e health and health data is a critical vulnerability in child protection but also in this area so the creation under the beating cancer plan uh the beating cancer strategy of a european health data space is offers a lot of hope um and i think that it you know the hsc is well am i optimistic not necessarily but we tried to push this issue around uh you know holding records in a correct way across the across the hsc before tusla was set up and i was told it would take five to six years um and it never happened uh i was gone after a couple of years as it happens so the other area i think where we are already drawing value i mean there's not multiple areas that ray mentioned already the areas that we draw in value from but also from the area of the register of inequality and the oecd recently under this initiative uh drew attention to an the fact in ireland that if you're from the least affluent the socioeconomic sector in ireland you're 40 more likely to die of cancer than the most affluent and that just is the most stark bigger it's a lot to do with not accessing screening it's a lot to do with lifestyle and you know tobacco and alcohol and nutrition but nevertheless it's very clear that this is adding value to the debate and the discussion in ireland and this is coming from the beating cancer strategy so uh there are other areas i think where we can benefit from from the strategy but the funding uh four billion sounds like a lot but over a period of the multi-annual financial framework and you compare it to annual budgets and health so for example France spends 200 billion a year so four billion on this over the period of the multi-annual financial framework isn't huge but those calls for proposal under EU for health are already generating activity and generating cross-border applications for funding and as ray mentioned the special cancer mission under horizon is very positive and the final thing i'll say about funding um and again ray kind of touched upon it is uh the european investment bank provided a preferential loan to biotech 100 billion 100 million euro which was part in order to develop the mRNA vaccine for cancer treatment but as it happens uh its use in the in in dealing with covid became very apparent early on so it raises a question because all of us are stakeholders in the iab because iab because our member states all are uh capitalized the bank so there is a degree to which the vaccine is a public good because we invested in it it's not just capitalism it is a social investment by governments through the european investment bank and it raises the question about the degree to which governments can insist that licenses apply and the patents are limited in certain circumstances of emergency and we saw this in the context of the pandemic particularly the trips agreement and the waivers that are uh anticipated under the trips agreement and whether they should be applied so it relates back to the investment that goes into the vaccines that are going to and i think mRNA as i said originally was supposed to be to do with the cancer vaccine so it'll be fascinating to see how that all of that develops so uh there's two more issues i want to mention one of one of the big challenges we have is around access to medicines and the pandemic really surfaced the problem of supply chain challenges and shortages of medicines which are very much at the forefront of the EU pharmaceutical strategy it's very contested space the EU pharmaceutical strategy our colleagues from the pharmaceutical industry are beating down our door to underline how important it is that if we don't provide a very positive environment for investment in the european union it will have a cost in terms of innovation and breakthrough medicines and medicines for rare diseases etc and we will pay a high price for that on the other hand the european union holds the view that unless we regulate to a better extent it becomes a lottery about where you're born in the european union as to whether or not you're able to access certain medicines that's the debate that's going on and um you know we've had uh there's a period of consultation which ends next week i think it is so it's very much contested it's very much live and it's it's going to be a challenge for us to uh get agreement on this some of the member states like germany is very much trying to uh you know it's on the side of the pharmaceutical industry other member states in different points of view particularly eastern european member states so um i won't go into the supply chain issue they're not germany very much to to cancer except you know they apply to all all all these issues but i want to say by way of conclusion that we are coming to the end of this mandate and i said at the beginning that i was really impressed with the advocacy the success of the Irish cancer society and all the networks of cancer societies across europe in putting cancer so centrally in the middle of health policy and then the uplift of the pandemic and interest in the year so it's a very propitious time actually and and a great model of success i think the next challenge will be for the cancer networks to to to meet the other disease areas who will now look for a similar treatment and particularly and i spoke to Aval about this last week is the cardiovascular health area which is a very much a similar incidence and yet nothing like the attention that cancer has received so we're coming to the end of the mandate um what that new parliament will look like what that new commission will look like all of that will be very contested after the european elections and before the formation of the commission the president of the commission will be appointed he or she will send out letters to the various commissioners giving them guidelines so there's a critical opportunity in moment there for advocacy and to try to make sure that we continue the momentum of what has been achieved some of the ideas that around are critical medicines act a new legislative instrument around critical medicines possibly procurement fund for medicines across the european union so various exciting prospects both very much part of the next mandate so back to you Aileen thank you thank you barry andris and our final guest today is dr torston geeseca who's general manager commercial business of yansen sciences in ireland and they're supporting today's event yansen comprises the pharmaceutical companies of johnson and johnson and appointed dr geeseca as general manager commercial business yansen science ireland which is responsible for commercializing six areas medicines where the need is high including oncology he joined yansen in ireland in 2021 from the company's headquarters in new jersey where he worked as director of global commercial strategy for early assets in oncology in several roles he has spearheaded several strategic projects including ensuring a transformational pipeline in prostate cancer he first joined yansen germany in 2006 as medical development manager and assumed roles of increasing responsibility before being appointed business unit director for therapy including neuroscience and metabolic doctor torston geeseca thank you so much and thanks for not using the abbreviations for sometimes wonder people actually you know know what what what's going on within the pharmaceutical company in any way so thank you very much for the for the very nice welcome and good afternoon everybody it's a pleasure to be here this afternoon in this on this panel of very passionate people around the topic of oncology i believe i'm also wearing two hats today the one is you know being an employee of a pharmaceutical company who is very much focused on oncology the other one is being a german working in ireland and having experienced myself that you know this is one of the nicest if not the nicest place in the world due to the fantastic people here you know so experience this form of of inequality that people who work for my company and make the drugs here in the south of ireland and ringers kitty and cork do not have access to a treatment and then when i go home to germany my neighbors they are of course have access to the same treatment that that's a form of inequality you know when you experience that where you wonder does that actually have to be so so as a pharmaceutical company we develop drugs globally we get them approved regionally but then in the end it's the national governments actually who have who are in the driver's seats to decide do we want this drug are we willing to reimburse this drug and where we have you know the the the national organizations to to generate the access for the local patients to these drugs covid i would fully agree seems to have increased the willingness of national governments the learning within covid the collaboration actually can accelerate by far the solution of medical problems is something that makes national governments to share and pool more of their compensation at least increase the willingness on the other hand it's it's astounding to see how the EU has gone into overdrive with the EU farm legislation the EU health data space the EU cancer mission the beating cancer plan so much legislation currently being developed and being discussed and I think it's actually a great shaping process that's going on there and all of these feed into the European health union so we were wondering as to what is the European health union and I would say first and foremost it's a vision it is you know how can we generate equitable access affordability and availability of of drugs for example across Europe so that every European citizen has the same access to the same treatments that sounds very desirable and that is what is being laid out in the EU farm legislation it is however important not to stop there is what we believe because you don't just want to manage the current status quo in order to beat cancer we need innovation in order to beat cancer we need to we need progress and that progress we feel that is more something where the beating cancer strategy actually comes in in order to beat cancer you know with the 10 flagship initiatives say how can we generate how can we generate this progress and this is why we are excited about these kind of European initiatives we're actually progress is on the forefront innovations on the forefront and where it's actually really achievable what Ray mentioned earlier that in an aging population where we see where we will see an increasing incidence of cancer we can still bring down mortality rates and Ireland is actually you know well set up to benefit from initiatives like this so we heard the numbers earlier that Ireland has a pretty high incidence of cancer and slightly below average mortality of cancer however what Ireland can claim is that the improvement in mortality in the recent I want to say decade has been faster than in many other countries and when you look in detail at these mortality rates and see what cancers actually have improved then it is multiple myeloma it's prostate cancer it's non-Hodgkin lymphoma and these are all cancer types where innovative medicines have become available so I think without you know having a clear causality it's probably safe to say that innovative medical treatments contribute to the success that we're seeing in in bringing down the mortality rate in in in Ireland there's also great clinical expertise and knowledge in this country and I'd also like to point out the compassion for patients that senior Irish physicians like Ray for example demonstrate you know when you follow the press and when you see how they fight actually for access for their patients to to innovative treatments so Ireland as a small country can certainly benefit from from European health initiatives and I would like you know I'd also looked at it and said okay what where does it probably where do we see the biggest impact and it's interesting that there's a very high overlap data has been mentioned a number of times so in a small country very often probably you can say in a small country you have less big data and you need big data to drive innovation so pooling the data with data from other countries especially if you have rare diseases pooling the data across all continent like Europe can actually drive innovation in order to be able to pool data the data needs to be interoperable and therefore it's important that if the EU agrees on a standard of data capturing that Ireland follows the standard to make the data interoperable that in in our opinion would be a great way and I think the the health information bill is on the table and is being discussed and is something that actually is a foundation for electronic health records that could you know open up the or feed into the exchange of electronic health records that the EU health data space offers and so you know maybe accelerating that bill and making sure that standards are being are being kept is something where Ireland can really could really benefit another thing I believe has been mentioned before is precision medicine so I think in in in the you know expert circles is undisputed that precision medicine is the future of cancer care precision medicine requires biomarker testing so having a strategy for precision medicine that actually makes sure that once a treatment enters the market the biomarker testing is available that would be very beneficial on the other hand we know that physicians usually don't employ the testing if there's no treatment available because why would you do the testing you know so then on the other hand to say you know how can we combine both and how can we make sure that both is is in a speedy way accessible for patients in Ireland that is what what needs to be contained in a in a precision medicine medicine strategy and then lastly the point of inequity yes this registry what inequity is certainly going to to benchmark within societies but it's also going to access it's also going to benchmark across societies so and the questions we we do already have benchmarks and we know Ireland doesn't necessarily perform well benchmark against other countries and you know me coming from from Germany for example 39 percent of existing cancer drugs are available in Ireland whereas 98 percent of cancer drugs are available in Germany if a new drug is being made available it takes almost 700 days in Ireland so almost two years before that drug is available while patients in Germany are already being treated with this drug so that's where we would say you know if maybe this this registry of inequity is able to create the momentum to say look improvement of this process is necessary budget is necessary it's not going to come for free but this is how i think really Ireland can make enormous strides towards ideally beating cancer thank you thank you very much now i'm just going to see are there any questions in the audience i have a couple of here on the screen for me but if there are any in the audience we'll take them first no so there's one here from Claire Noonan whose operations and accreditation lead in Beaumont or CSI cancer center talking about cancer data which you've all referenced patients in Ireland go between multiple hospitals on their diagnostic and treatment journey how can private and public hospitals be supported to work together for the purposes of sharing that data who'd like to take it Ray i suppose system first i think we have to agree on a system and implement it we were we were nearly there i thought a few years ago and then the momentum seed to fail i mean in radiology and we have an almost national system not quite it's almost there in laboratory medicine we have a number of hospitals that use the same system but we don't have a dedicated in prescribing for oncology we have uh we will soon have a national system and so that you'll be able to view whatever drugs you get no matter from where you're you're getting them so that they are improvements but we need an overriding system whereby you know they talk about you where you have your history on a stick where the patient can bring it around with them and you know plug it in here we go this is what's happened to me but we're very far away from that i'm afraid okay so here's one then about gd pr uh angela clayton lee is coo cancer trials ireland could the panel please speak to the challenges around developing regulatory harmony between EU and non-EU countries anyone want to take that yes i'd be delighted to take that on and so i mean the gd pr i mean i i really i'm way out of my lane here but obviously the gd pr has a has a reach well beyond the European Union um this is the classic brussel's effect where regulations in the European Union um cast their nest well well beyond the member states um so no i really not sure how it can fly into this area i mean so i'm gonna take a pass we've had great difficulty because Ireland takes a very let's say a very tough interpretation of the same regulations for other european countries don't and as a result it makes it extremely difficult for us to open clinical trials and you get different interpretations in different hospitals in the same state as well so that that i i wonder is there any way that that can be improved well i mean i i understood that the the challenge of clinical trials is the scale here in Ireland i mean just to you know don't have the the patient numbers in particular in sort of rare diseases obviously and the clinical trials aren't so the cross-border multi-center clinical trials is much more attractive and we hope that the beating cancer strategy will incentivize that encourage that um as to the strictness of the interpretation of gdp or um i haven't come across this issue but obviously very interested to see what we can do to explore it did you want to add something ever maybe just to say that you know from a from a patient point of view i think the gdp or is a positive development in terms of protecting health data i'm really sensitive health data people are you know and i think that's part of the equation as well on digital health they're enormous improvements and they're like they're enormous innovations that are being enabled by more data collection more data sharing more use of wearables that are digital technologies but they're understandable patient they're understandable concerns from a privacy point of view and from patient's point of view about well who has access to that white what weight they use it for um so i think data protection is is really important it's a huge part of digital innovation making sure that you've adequate data protection um there's cancer society i guess we've we've had to do a lot of work with gdp or came in to make sure that all of our own services were gdp or compliant or um our nursing services our research our fundraising all of that we did a huge work a lot of meant to work on it internally and what i will say that i definitely think that there could have been more help um in terms of understanding how to apply that i think you had a lot of organizations that we've won the biggest charities and we were helping other charities do it but a lot of organizations figuring it out for ourselves how to do that um and certainly it was feedback that we got from the research community that ray mentioned that look individual hospitals were having to figure that out locally um and that both the we did i think it will be certainly be a strong feeling when in the research community um and the healthcare community in general that are and did take a very conservative approach to the interpretation of it certainly much more conservative much stricter approach than other member states um and that as a result people are and that you know they're significant fines which is great when you don't want facebook stealing your data or you don't want you know you want to make sure that's your neighbors you know in a hospital can't log on and see why you were in there that you were getting chemotherapy or things that like that's great but then it also does have a chilling effect in terms of hospitals were afraid then to approve trials until they figured out how they could do it in a gdp or compliant way and they're often figuring that out individually um and that took a long time and it did it definitely meant that trial activity was really stymied for a long time and that like some hospitals got there faster than others so i think the lesson is really just i think from the european perspective i think is to have more guidelines for when these regulations are coming in maybe you know to work by the european level and irish level to make sure that you know they're being the directives that regulations are being transported like i transport in ireland in a way that you know meets the spirit but doesn't have you know unintended consequences particularly in health care where we need to have innovation and also that there's guidance for organizations whether that's NGOs, pharmacopheles, hospitals, research institutions on how to comply but that that is kind of spelled out for you what you should do rather than people having to figure it out for themselves. Now i know a lot of disappointment in health care circles about this year's budget and the lack of extra funding for health whether it be for research for new drugs for whatever so here's a specific one from john glinn for avril and for senator hoey are there any alternative plans since the lack of investment from the irish government for budget 24 towards the cancer strategy and can the eu help put more pressure on investment for ireland? So i would say that look i mean there's cancer one of our key roles is advocacy and putting pressure on government to deliver and as i said we're really disappointed that this national cancer strategy hasn't been funded there were incredible strides made under our first two cancer strategies in coming from the star cemention being behind in EU terms to really making leaps and catching up and getting to the average but our current one was published in 2017 and the ambition was to get the best in class it talks about getting to world class performance not just average but world class outcomes in prevention detection treatment and it hasn't been funded and we just think that's crazy because you can see in cancer like the investment leads to improvements and outcomes it leads to savings if cancer is detected earlier it's so much easier to treat like your cancer say for example testicular cancer diagnosed at stage one 90% survival stage four you're under 20% it's the same for other cancers and that means you know worse outcomes both for the individual but also far more expensive treatments and it puts people in the space where the only thing that might work for them is a really expensive new treatment that will work towards the end whereas picking and investing in area detection and prevention area detection would have meant that they maybe never would have had the cancer it would have been picked up much earlier so for cancer society point of view it's enormously frustrating and pride of our role is we are primarily publicly funded we rise the vast majority of our funding from the state and we're going to get from public running a 5% from the state and we use that funding to be the largest voluntary funder of cancer research Ireland so funding research funding sometimes basic infrastructure that will be funded by the state elsewhere but we fund for example cancer trials Ireland millions cancer trials Ireland and service innovations in hospitals so we try to help as Janet said like you try to not make lack of government priority and investment and you can't do anything we try to inspire the public and see what we can do ourselves and ahead of you know there would be an election coming up in sometime before March 2025 we'll be working hard to make cancer priority for all parties because as I said look we're all going to be affected unfortunately and it's an absolute no brainer that the state invests now like that prediction that I mentioned that we've number of kind of rate of our number of people getting cancer in Ireland will double over the next 25 years that's a prediction it doesn't have to become a reality and if we actually invest in the right stages of the cancer journey now the earlier ones we can save on that and I know John Glenn is from the Gavin Glenn Foundation is doing amazing work I wish children and families affected by childhood cancer and again I just feel that some of the work that John does and the work that we do and others across the NGO sector shouldn't have to be done by ourselves it should be a government priority it should be resourced and we should all know that whenever we do face cancer our loved one our loved one does that they're getting what we would get in Germany or what we would get elsewhere. Kay Duggan-Walls from DG Research and Innovation wanted to highlight the EU cancer mission which is going hand in hand with the Beating Cancer Plan and this obviously is funding research to the tune of 365 million in the last couple of years. Annie your response to the previous question? I mean April kind of said it all I'm not in a government party so I can't be held accountable for some of this I think and based on some of the conversations we would have had at the Health Committee when we had people in from National Cancer Strategy and stuff it is surprising I don't know if there was like free warning it wasn't like it is surprising that the funding isn't where it needs to be because it was very clear even from a Health Commission perspective member when they came in they were outlining the real potential of this strategy the real potential for where we could go with cancer care in Ireland if we kept going and had the the funding and you know when you say that you know five percent comes from the government for the Irish Cancer Society and that your funding research to me that is not where we need to be in terms of like that it is not right that we have to fundraise members of the community who have largely been affected by cancer shouldn't be the ones that are fundraising to do the research on cancer you know that that this to me is a no-brainer in terms of long-term investment long-term care and I am absolutely convinced that investing in cancer care has other areas but investing in those early stages of detection and those trials you know the long-term savings and it's it even feels a little bit you know feels really icky to talk about cancer care in terms of savings and money and financial because these are my dad my aunt my grandmother the one and two it seems optimistic to me I seem to have terrible genes in my family we've been really terribly affected by it and when we talk about saving sometimes I find it very difficult to do that you know I'm talking about this hypothetical people and I see my family members kind of their faces going in front of me because these are actual people we're talking about and their lives of meaning regardless of what stage in their life they get that diagnosis their lives have meaning and they should be able to get 98% of the drugs and they should be able to not have to go to another country and they shouldn't be up to the Irish Cancer Society to be funding research that there should be government led you know so I don't know where the alternative funding for that come from because I don't I might be at odds with pharmaceutical companies but I don't think there should it should be coming from government level it shouldn't be up to academics scrumming it out with horizon funding trying to find things like this should be something that is meaningfully funded and at a both a government level and obviously at a European level and it really bothers me you know obviously we do all of our things that we do but it bothers me that we have to rely on people have been affected by cancer to fundraise for their own research so that someone else doesn't have to suffer that isn't where the way I think we should be doing cancer care anyone else want to come in on that Barry just very briefly just to the cancer medicines have become very expensive and just some of the figures that total expenditure from 2008 on cancer medicines to 2018 increased from 14 billion to 32 billion over a course of 10 years per head of population in the European Union has increased from 28 euro per person to 61 euro in the same period and that cancer medicines as a percentage of the total of cancer costs increased from 17 percent to 31 percent so it's a so the EU pharmaceutical strategy is trying to some extent to try and address this to try and use the scale of the European Union to create a single market for medicines essentially and that can only have we saw with the pandemic can only benefit smaller member states so I'm not protesting the deficits the historical deficits in the HSE but I do feel some level of optimism that the European pharmaceutical strategy can help some of the pharmaceuticals industry is not happy with some of the elements of the of what has been proposed more transparency around the costs of R&D in pharmaceutical industry in the pharmaceutical industry is required under the legislation so we hope that as I mentioned earlier this will filter into the Europe the Irish system in due course awesome yeah and I think as I said I think we're having excellent discussions around this how to move forward just just when in terms of cost of drugs if the focus is just on oncology these are the the appropriate numbers in terms of drugs overall the the share of drug costs and of health care costs has not increased why is that because before we made this huge strides in oncology actually lipid lowering drugs were you know the last big thing which extended overall survival and increased the health of people all those drugs have come off patent and have released a huge amount of money that is now actually being spent into oncology drugs so overall you know the the cost for drug in in all indications across now I think we're we're looking at this over three decades now has remained amazingly stable yeah so so oncology at the moment is in a in a period where there's huge progress and where there's huge innovation and it was said in the beginning of the of the discussion it feels like we're close to getting more cures to more cancers so that's probably by an investment at this time in this therapeutic area is justified did you want to final word there yeah just briefly on the you know on the cost of medicines it is it's amazing the innovation that's coming through it is crazy that Ireland like that part because the only country with a slower system than ours and that Irish patients aren't getting access to those medicines but I think it I think the EU I agree with Barry that like there's absolutely a role for the EU because we also like there's very it's very difficult to get that and we work as part of the European Fair Pricing Network European Cancer League with cancer societies from across the across the EU and it's really difficult to get transparent data on prices and what governments are actually paying but it is generally understood that the German government as a result of the size of the market is paying less than certainly the starting prices and then there's the negotiation from the starting price before and then what it agrees with government as it goes through an insanely slow process here to actually get something approved but there has to be something in the EU coming together as a market and to try and come up with a fair system and look that needs to take account of the you know the income levels of different countries the you know that could see some countries paying you know if there's not some kind of waiting it seems the lower income countries potentially some of them paying more than they are now like there's all kinds of challenges with that but not doing it I just think it's very difficult for small countries like Ireland to figure that out on our own so I think we hope that between EU level you know the pharma companies needing a solution our own national systems that we can find a way to bring that together and come up with a system that you know funds research and development incentivize companies to develop to drive that innovation but also results in fair pricing across the EU and fair access I do think the EU is central to that. Okay and then picking up on that Jim McGrath the IPHA wants to ask Ray McDermott and maybe Thorsten also what do you believe are the patient and health implications of not funding the most recent innovations? Well we certainly won't get to wherever I want this to be. So yeah the good thing about that is Thorsten said I think the way things work is EU drugs are developed okay we should focus on prevention of course and early detection without detection but the reality is many cancers like pancreas cancer which I see very commonly is people be diagnosed very late we don't have any good treatments for us apart from ones that we've been using for many years there's a lot of interest in developing new agents for that and that will hopefully come I think it'll come very soon and then how do we how do we procure more patients with pancreatic cancer then well by using these drugs earlier in the disease process that's going to inevitably cost more money and without that we are going to languish we're doing reasonably well in pancreas cancer at the moment it's still poor as Abel said it only 20% roughly of patients will survive that disease so we want to get that figure up and the way to do that is by investing in these new treatments and bringing them earlier in the disease process if we don't do that well then we're going to go down in terms of our outcomes. Yeah I think to Jim's question I think inevitably there was agreement in in the press that having no budget for an optic medicines will further increase waiting times for Irish patients. And there was an earlier question about our mortality rate and is it because we detect cancers later or is it due to other factors say like too much smoking and too much drinking and I think COVID definitely had an impact in terms of detect detecting cancers later and I think you know I think traditionally in Ireland there was probably a reluctance to go and see the doctor you know back in when I think of back when I started to do oncology I don't think that's the case anymore I think that is nowadays those typically men are dragged along by their wives or partners and and you know their forests come in so actually I don't think that's as big as a problem as it used to be in Ireland and I definitely think we can always do better but I think we have managed to get over that one. Some of it is that you know we started so for example you're looking at the best performing countries which is the Nordic countries in particular they started screening earlier in us so while we now have the three screening programs they started those earlier than us so they're seeing results faster and I think that just generally makes that point about early adoption and then the other another key one is look at the inequalities piece that's mentioned like there are huge differences between cancers and also I'm between communities and you mentioned you know you've won in four cancers being picked up in ED departments typically amongst lower areas some of them is pancreate some of them is cancers that were almost impossible to detect until people were in pain but a lot of it actually is cancers where people may have had indications they had symptoms but they didn't have the money to go to see the GP or they couldn't get access they couldn't you know they're waiting on a waiting list for cancer diagnostic test where that somebody with private health insurance can jump that list or if you can pay for privately you can jump that list so we would always say the biggest issue in Ireland is detection it's cancer detection because if we could you know there's definitely issues around access to innovative medicines and all of that but the biggest difference you can make in survival would be that if you picked up every like cancer where we can if you could pick up cancer earlier when it's easier to treat and things like lung screening hopefully which are coming down the line that I mentioned where you can take it won't be for the whole population but it will be for people from particularly lower socioeconomic groups who have a long-term history of heavy smoking and you bring those people in and scan them and hopefully pick up signs because we know unfortunately in that community that for example like they you know have poorer health outcomes poorer health access they will ignore things like a long-term cough because they feel it's just typical of being a smoker and so I think the more they can put screening and things like that in place that will make a big difference. Final comments? I think if I you know when we're talking about when I'm reflecting on my grandmother, my granny about 10 years ago you know by the time she had died when she had gotten her first appointment letter she had already you know she was diagnosed in November who just happened to be you know some sort of BHI something of the other that her son you know some sort of anyway somehow we got her into the hospital and by the time she had gotten the letter to say that she should come in for her first screening for her illness she had already been dead a month and that was over 10 years ago I don't know when I'm waiting this we're you know at a different point to what they're at so that again that just that real inequality piece between and I really you know the people who have the insurance people don't have the insurance the people and then the people who have the ability or a fighting family member or themselves have the ability to fight to get into a system versus those who don't and I think that inequality speeds and that obviously ties into what drugs people have access to but I'm really struck the further along I've been involved in this political life and this activist life who has access to that social capital and who has access to that community-based support which where someone goes actually that cop is not normal as opposed to you know and and lots of people even have got my dad into a single cop you know no idea you know and so that that that social piece of inequalities is something that I really think we need to get grips with while we're dealing with access to medicines and access to drugs and access to all these other things and cancer care can't be who can be negotiate central hospital first and and then family members get letters when they're dead for their first appointment that is a terrible state you know that's not where we need to be so we need to be able to lift people up into that advocacy piece for themselves as well while we're building the system we need okay a somber note to end on but we're right back so I'd like to thank you five for being here today and for your contributions Barry Andrews dr Torsten Giesige senator Annie Hoey professor Ray McDermott and Avalpar thank you all and thanks to you here in the room and to you watching us online thank you all for participating today and until the next time slaw