I suppose that I should have written this before I hit the target but it felt a little presumptuous.
I now struggle to find the words to convey the joy and relief I feel in hitting the £10,000 #Kris10 target for Leukaemia Care this morning. Thank you is a good start.
It’s taken nearly 11 months and it’s been really, really difficult. The walk and the recent Big Finish auction pushed us hard towards the line but there have been plenty of moment where I felt that I’d bitten off more than I can chew. It’s hard not to take things personally especially when the cause is something so personal. I’ve developed some thicker skin and a newfound appreciation for professional fundraisers. In fact, I just don’t know how they do it, it’s an incredible skill.
Nearly 11 years ago I was diagnosed with leukaemia but you know that story. The story now is about supporting people who are diagnosed with a blood cancer today, tomorrow, next week… Treatment options are improving and we’re making inroads into earlier diagnosis. There is a huge psychological impact on the patient after diagnosis and the emotional impact leaves lots of damage. Leukaemia Care do an incredible job supporting patients and families with the seismic shift a diagnosis brings and this money will make a difference.
Is there a better Christmas gift? We’ll save lives with this and given that you are reading this you are likely to have been part of this story and I genuinely can’t thank you enough for your support.
There’s always a long way to go; work like this will never end and our relentless commitment to making people’s lives better is worth it.
So, take the baton, run a marathon, jump out of a plane, fly down a zip wire or sit in a bath of beans. Go and write your own story. I’m done for now. It’s nap time. Happy Christmas.
Championed by BBC Introducing in Merseyside, The Ambition have been announced as the headline act for a Cavern Club fundraiser that is set to raise thousands for a national blood cancer charity.
The band won ITV’s This Morning’s best unsigned artist competition in 2016 and have been lauded by celebrities such as Philip Schofield and more recently, their latest single ‘Thirty Thousand Feet’ grabbed the attention of Warner Music who have added them to their Topsify playlists.
Kris was diagnosed with Chronic Myeloid Leukaemia (CML), a form of blood cancer, at the age of 32.
Kris said, “After visiting my GP with symptoms such as night sweats and pain in my hip, a blood test went on to reveal a leukaemia diagnosis which had me asking the question, ‘Am I going to die?’
“When you’re told you have a leukaemia, or a blood cancer, or some other terrible disease, you never forget what being told feels like. There’s a ringing in the ears, everything just drains out of you. You just feel like you’ve been punched, really hard, but you feel no pain.
“Now ten years on, I’m a marketing expert, blood cancer charity trustee and a passionate campaigner working with fellow leukaemia patients across the world seeking access to treatment. I’m also a seasoned public speaker, I recently spoke at a training day for 40 West Midlands GPs to help them understand what a blood cancer diagnosis feels like from a patient perspective.”
The Cavern Club have kindly gifted the venue to Kris to help him reach his £10,000 fundraising goal. The gig is part of a year-long #Kris10 campaign.
Kris said, “As a huge fan of The Beatles, I was delighted when the Cavern agreed to let me use their venue for the night. I’m absolutely chuffed that another Liverpool band have agreed to headline the event – The Ambition are a band to watch out for.”
Kris’ gig is also being supported by vocal coach CeCe Sammy through her programme, The Power of Muzik. Artists from The Power of Muzik will form the rest of the bill which will be announced at a later date.
The Ambition are a Liverpool based pop group, they are inspired by acts such as The Vamps, The 1975, The Weeknd and Coldplay to name a few. Their debut single “THIRTY THOUSAND FEET” dropped on 31st August 2018 and has been well received. They have been invited into BBC Introducing 20th October 2018 to perform their new single live and to chat about their record.
Leukaemia Care is a national blood cancer support charity. They are dedicated to ensuring that anyone affected by blood cancer receives the right information, advice and support.
Just a huge note of thanks to everyone who donated and sent birthday wishes. I raised £343 towards my #Kris10 campaign. That’s a lot of socks and pants.
We’re fast approaching £2,000 and we’ve taken a step closer to that HUGE £10,000 target.
I was diagnosed with Chronic Myeloid Leukaemia (CML) in 2008, aged 32, after visiting my GP with symptoms such as night sweats and pain in my hip. A blood test went on to reveal a leukaemia diagnosis which had me asking the question, “Am I going to die?”
When you’re told you have a leukaemia, or a blood cancer, or some other terrible disease, you never forget what being told feels like. There’s a ringing in the ears, everything just drains out of you. You just feel like you’ve been punched, really hard, but you feel no pain.
Now ten years on, I’m a marketing expert, blood cancer charity trustee and a passionate campaigner working with fellow leukaemia patients across the world seeking access to treatment. I’m also a seasoned public speaker, I recently spoke at a training day for 40 West Midlands GPs to help them understand what a blood cancer diagnosis feels like from a patient perspective.
The diagnosis made a huge difference to my life. Clearly, I could do without it, but it has made me a better person, I’ve no doubt about that. It’s made me recognise the important things in life.
To celebrate ten years since diagnosis, I’ve set myself a challenge to raise £10,000 for Leukaemia Care, the Worcestershire-based national charity that I’m a trustee of. I am also donating 10 days of my time to help support the charity, from marketing support to holding live webinars for anyone affected by a blood cancer diagnosis.
One of my key events in this year of fundraising will include a gig which is being held at the Cavern Club in Liverpool on 1st November 2018. As a huge Beatles fan, I was delighted when the Cavern Club gifted the space to hold the fundraising event. Other fundraising ideas include a 10-mile walk and donating my birthday to the charity in lieu of presents.
Nicole Scully, fundraising manager for Leukaemia Care said, “Kris is a fantastic example of somebody who is living well with a blood cancer. Kris is using his own strength to support others who sadly may not be living as well as he is. His fundraising pledge is a huge boost to the charity and will enable us to train more GPs about the signs and symptoms of blood cancer, support haematology nurses and continue to fund our support services for patients. We’re really excited to see how Kris’ year pans out.”
Tickets for my charity gig in Liverpool are now available through the Cavern Club website http://bit.ly/CavernClubKris10.
To follow my story and to find out more about the fundraising, search online using the hashtag #Kris10, follow Leukaemia Care on social media or visit the JustGiving page: www.justgiving.com/fundraising/kris10.
I finished writing this blog post at some silly time in the early hours on the day after the conference. It was one of those jobs that simply needed to be done. I knew I wouldn’t be able to sleep if it wasn’t completed.
As it stands, I’m sat in a hotel waiting for a full-English, feeling like death. 4 hours sleep simply doesn’t agree with me and the hotel doesn’t do espresso!
After re-reading the piece it’s obvious I missed an incredibly important sentiment. Rather than sneakily jumping back in and editing seamlessly I want it to stand as it reads and bolt this on like an extra appendage.
The key to success for many of the projects we heard from yesterday depends on working collaboratively and sharing resources and funding. In a world that appears to be shrinking due to the cowardly fury of some sections of the population, it puts everything at risk. If we don’t work across borders, without restriction and we don’t pool finances to be better as one, then we risk everything. Everything.
Take the genome project for example. We know that the key lies in sharing and cooperation. Isolationism risks this. The Concordia research base is used and funded by countries across Europe and is part of the European Space Agency. Where does the future of Britain lie in these types of project? Worryingly, we don’t have answers and, even worse, the underlying sentiment from a Government without opposition appears to be that we’ll be just fine on our own.
Whilst we should be celebrating great minds we find ourselves worrying about the actions of the stupid ones. History tells us they can’t and won’t win but the stakes are high. When the world should be pulling together and giving us our Star Trek moment, it feels fractured and broken.
But, rather than shedding liberal tears, I’ll raise my middle finger to the situation and put a boot through it. It won’t stop me and it won’t stop the people in the room yesterday. Character IS destiny and I’ll raise a glass to the crazy ones. The ones that bring the world together through science. The ones that disrupt. The ones driven by compassion and love. The ones who believe in changing the world for the better. To the main event…
Cheers, Kris.
The #WIREDHealth conference is sold out again this year, so to be in a room with so many brilliant influencers, movers and shakers, I feel incredibly privileged.
But, why is a blood cancer patient at a conference widely regarded as a showcase for healthcare innovation, not necessarily medical breakthrough? Patient power means that we have to consider the bigger picture and when I attended two years ago and made contact with Oxford Nanopore it made me realise how isolated we can be.
One day, the MinION from Oxford Nanopore will allow blood cancer patients the opportunity to home test and send results to their consultant. A breakthrough for anyone who’s had a bone marrow biopsy. And take it from me, I’ve had 14 and this would be a welcome relief!
Today is all about looking at the health sector and seeing how we can apply technology and breakthrough advances to blood cancer. I’m incredibly grateful to Leukaemia Care, who I serve as a trustee, for funding my attendance and having the foresight to look at the bigger picture and for truly caring.
400 eager delegates packed the auditorium at 30 Euston Square in London to listen to speakers from across the planet. After the formalities from the incredible team at WIRED who put the conference together we moved straight to our first speaker: Peter Piot from the London School of Hygiene & Tropical Medicine. Peter spoke at length about the threat of epidemics, the reality of HIV and the danger of reliance on antiretrovirals. The messages were particularly hard-hitting, as they should be, and focused on better communications (especially on social) and ensuring funding is secured in this worrying isolationist time. In other words, if we don’t rebrand AIDS then we’re in danger of it getting out of control again.
Straight to Helmy Eltoukhy, the CEO of Guardant Health, to talk about cancer and genomes. The Guardant360 blood test ensures that cancer patients can be matched to specific therapies and in 2017 it is the fastest growing test for advanced cancer patients. It will also play a part in early detection. Their LUNAR test which is under $1,000, will test for five of the main cancer types (sadly not blood cancer at this point).
“Imagine fighting an infection without knowing the associated virus.” – Helmy Eltoukhy, the CEO of Guardant Health
The Chief Medical Officer for England, Professor Dame Sally Davies followed up on the topic of genomes and cancer and presented an incredible introduction to genomics. The UK is leading the world in genomics and it is proving to be the key to unlocking the deadly secrets of cancer. She spoke about the 100,000 genome project that 85 hospitals across the country are involved in, 1,500 NHS staff and 2,500 researchers and trainees from across the world. They are looking for faulty genes and the reasons they become faulty.
So, analysing a whole genome sequence will allow us to have that comprehensive view and give us the power to make decisions and diagnosis with a higher success rate. We were shown a case study where a partial sequence didn’t help, only the comprehensive approach provided the answers needed. The 100,000 genome sequence is patient focused and Dame Sally really believes that the one-size-fits-all approach DOESN’T work. Her approach is steeped in science-fact. What an inspiring talk, Dame Sally is to be applauded and supported for all she is doing.
(l-r) Kris Griffin and Waseem Qasim
Hot on her heels, Waseem Qasim from the Institute of Child Health. This conference was non-stop, amazing stuff! Waseem presented his work on engineered cell therapies, something that blood cancer patients may be aware of; it could be a considered a future treatment instead of a bone marrow transplant!
He’s involved in some incredible work on immunotherapy and the use of T-cells has been called a breakthrough in science (and leukaemia treatments) by publications and the industry alike. There’s lots of work to be done but this is an area we should be very aware of as we search for that elusive cure. In 2015 a high risk ALL patient aged 11 months was treated using a special therapy licence. UCART (UCART22 is an allogeneic engineered T-cellproduct candidate designed for the treatment of acute lymphoblastic leukaemia) cells were introduced to eliminate the leukaemia cells, these UCART cells were then deleted. 18 months on and the disease is undetectable. A formal phase-one trial is underway for children and adults with ALL. It’s an incredible breakthrough and the term molecular-scissors is one I feel could be a gateway to a brighter future.
Jurgi Camblong, the CEO from Sophia Genetics spoke about data-driven medicines and gave us an overview of collective intelligence through interconnectedness. This interconnectedness involves people and organisations working together all over the world. It was good to see privacy issues addressed but they continue to be the biggest obstacles. It seems, that we have no choice but to find a productive, safe solution. If we don’t, then we risk our future. Sophia has hit the 100,000 genome sequence target and they continue to build. We need more data because data means treatment becomes more successful. We’re back to patient power and personalised treatment once again. It’s a constant theme.
After a short break, we moved to section called ‘the data will see you now’ and to Jessica Mega representing Google’s medical arm, Verily. She spoke about collecting info, organising it and activating people to promote healthier lives. It was interesting to look at the advent of new, connected devices. Whilst we’re beginning to get comfortable with wearable devices, how about a spoon that detects a tremor or a phone that detects changes in voice and language patterns? We need to move from a system of individual productivity and IT silos to a system of collective intelligence and distributed computing. In other words, sharing is good. It’s that theme again. She talked about designing with the user in mind and ensuring that the patients get the tools and solutions that they need rather than the ones that they are given.
Straight on from Jessica, Jasmin Fisher from Microsoft Research Cambridge spoke about decoding cancer. She started by talking about cancer being a personalised disease. Some of her work includes modelling leukaemia cells so we are able to look at different states and make better predictions in order to reduce the effectiveness of the diseases. This means new biological insights, the ability to identify new therapies and help against resistance, which will all lead to better personalised treatments. This was an exciting blend of science and data.
WIRED have the ability to change gear very quickly and Marko Ahtisaari from Sync Project waxed lyrical about self-medicating with music! He took us through the scientific stimulation that listening to music gives us; the brain fires in different ways when we listen to different types of music. In several studies, music has had pain reducing effects. It’s hard not to be sceptical but in an era when music is so readily available and I know that I have playlists I put on to focus, inspire and cheer me up – then why not have a playlist that helps with pain. The work that Marko is doing starts to turn this into a science; the research he is doing into relaxation before sleep is particularly interesting and the Unwind.ai website is fascinating; please check it out on your mobile device.
Khaliya, a mental health strategist tried to push the envelope. Khaliya told a very personal story about her connection to the mental health agenda and the issues that come with it. Unfortunately, her scripted approach didn’t make it easy to connect with her. The concept of mental injury is an excellent one but when she spoke about the usage of psychedelic drugs on brain injuries, my scepticism kicked in. I was tempted to switch off but I’m glad that I didn’t. On reflection, this provocative section really challenged my thinking and Khaliya’s standing applause from some members of the audience really stopped me in my tracks.
Kris Famm from Galvani Bioelectronics ended the morning session with a focus on bioelectronic medicines. This felt like future-gazing at its very best. I don’t profess to understand this area at all but it’s clear that it could offer good outcomes for many diseases. The electric stimulation of a nerve (vagus) by an implant has had incredible effects in trials for rheumatoid arthritis. There was similar evidence for type two diabetes patients after nerve stimulation. It presents an incredible opportunity for a large number of future treatments and it’s a system that provides high efficacy, low side effects and broad access.
After lunch, we went straight into a section on the end of ageing which was curated by Dr Jack Kreindler.
The section started with Matt Eagles who has had Parkinson’s since the age of eight, 41 years. He’s a patient advocate and speaker and I applaud the conference organisers for including him on the agenda. He weaved an incredible life story around his use of implant technology (deep brain stimulation) and traditional treatment. Matt’s desire to stay young for as long as he can and his fight against a degenerative neurological disorder is one of courage and the love of life itself. Plenty of life-affirming moments from an inspiring individual.
Through to Daisy Robinton from Harvard University who provided an in-depth presentation about CRISPR, the Science magazine discovery of the year in 2015. She provided insights how we are using this to move forward with actual gene editing of humans. There is already a trial happening in China at the moment.
In the future will a visit to the doctor result in a referral to the gene surgeon? At childhood, will all children be screened and edited against diseases? Can this be abused to ensure a child has 20/20 vision or the attributes of a great sprinter? Ethically, it’s a challenging time but the opportunity to eradicate a number of diseases is too good to lose sight of.
Just when you are getting comfortable in your seat, WIRED pokes you in the ribs, we end the session with Elizabeth Parrish. She’s the CEO of BioViva Science and has undergone two rounds of gene therapy to reverse the symptoms of ageing. With photos of old people on the screens behind her, she spoke about the inevitability of ageing and clearly sees the consequence as the end of civilisation as we know it. She spoke about ageing as if it were a disease and treating the effects of it with gene therapy. This talk raised plenty of issues with me, mainly one of the ethics in experimenting on yourself but conversely isn’t this the ultimate in disruptive behaviour? The charismatic Parrish polarises the healthcare community and offers a useful insight of what could be.
It was refreshing to see Beth Healey from the European Space Agency to talk about life at the extreme. Concordia Research Station, which opened in 2005, is a French-Italian research facility that was built 3,233m above sea level at a location called Dome C on the Antarctic Plateau, Antarctica. Beth spent over 12 months at Concordia and spoke of days without the sun, sensory deprivation and living with, and on top of, a small crew. Beth was part of, and led on, a number of experiments and research during her stay including MRI, cognition, movement analysis and searching for extremophile bacteria. The preparation for manned deep space exploration is key but the knock-on effect for life on earth is equally important. It was a fascinating insight into this research platform and the work that goes on behind the scenes.
After another short break, David Halpern from the Behavioural Insights Team talks about disputing heath. I really enjoyed his analysis of the variety of outcomes that comes from behaviour in health. Using the basics of long waiting times, missed appointments and the over-prescription of antibiotics he provided some alternatives to current solutions based on behaviour. For example, if you tell the patient that a missed appointment costs the NHS £160, this has proved to reduce the amount of missed appointments – get the messaging right! By making high-calorie drinks a little harder to reach in a hospital canteen meant they reduced the amount sold whilst keeping sales stable because healthy drinks were purchased instead. He advocated that healthcare should go EAST when it comes to behaviour: Easy, Attractive, Social, Timely. An outstanding presentation, I immediately went to Amazon and purchased David’s book!
Eren Bali, from Carbon Health, followed up by looking at creating the world’s largest healthcare network, essentially redesigning the current model. It would be a technology platform that would connect hundreds of thousands of doctors. This is a system where you hold all of your own medical records, electronically.
I’m sold! In San Francisco, there are 100,000 patients already on the platform with 20 practices dealing with primary care, urgent care and specialist care. His virtual bot approach isn’t that different to the scripted NHS service we currently get on dialling 111. Using big data means that users of the platform can take advantage of a more personalised approach and much better outcomes. A brilliant approach!
The (Pricilla) Chan (Mark) Zuckerberg Initiative has £3bn to spend to eradicate all diseases, Jeremy Freeman joins us to tell us how. One of the issues with science and collating data is knowing what to do with the raw data; clearly getting results from raw data is key to making progress. How do we make ALL of the science more efficient, more effective and more collaborative? Their aim is to support basic science and technology that will make it possible to cure, prevent or manage all diseases by the end of the century. By combing technology and science, experts from both fields collaborating, means that this can become a possibility as the data will not become an obstacle. It’s hard not to fall in love with such a bold, brilliant idea and I’ll be following their work with great interest.
To continue unlocking the brain, Aldo Faisal from Imperial College London takes up the baton by capturing the perception-action loop. That is, over 80% of the movement of parts of the body that flow in and out of the brain. He created the human ethome database and can tell us, using science, what the two most important movements of the hand are; not the presumed answers of pincer grip and power grasp. This science means that we can provide better functioning robotic limbs. We were also shown fascinating videos about human augmentation using this new understanding of the brain. It was refreshing to see him advocate an approach that meant the science has to be married up by behaviour in order for things to work.
A hop, skip and jump across to exponential medicine with Daniel Kraft from Exponential Medicine. Ten years ago the first iPhone launched and look how far we’ve come. This fast-moving talk moved at the pace of recent technology advancements. The initial conclusion was based upon joining the dots.
Daniel ran us through how everything is connected, especially with the advent of 5G but how do we make sense of all this data? Sock’ables, sweat’ables, breath’ables, voice tracking that detects mental health, sensors in a baby’s nappy, urinalysis are all becoming part of our healthcare system. Will Facebook, Twitter, Amazon, Echo and things like the Apple Health Kit be the thing that binds it all? It’s clear that we need integration. More is going to happen in the next 10 years than in the last 100 and we need to boldly create together.
This year the content on the main stage was of such high quality I didn’t get to visit the start-up stage. But the winner this year, Give Vision, was given the opportunity at the end of the day to present on the main stage. Stan Karpenko did a superb job in telling us about his revolutionary electronic goggles that allow visually impaired to see again. It was a special moment to watch a video of a young boy given the device that enabled him to see properly again. Because, ultimately, that’s what we’re all in this for. To make a difference. To make things better.
The WIRED team hit the highs of two years ago when I last attended, and then smashed through them. The conference was provocative, inspirational and fundamentally important in equal measure. I tell colleagues that this conference puts you one step ahead of everyone else in the healthcare sector, it feels like the beating heart of innovation. From the perspective of a patient with a chronic illness it gives you hope. Hope in that there are LOTS of people who care and hope beyond the system. Because this is what disruption is all about and we’re a better society for it.
Thanks to Leukaemia Care who funded my attendance at this conference. Please visit their website and find out a little more about them.
(l-r) Kris Griffin, Greg Williams (Editor of WIRED), João Medeiros (curator of WIRED Heath)
It is vitally important to state that as far as we are aware, all versions of generic imatinib are the bioequivalent of the original drug (meaning they have the exact same active ingredients). If you are taking a generic, under the supervision and recommendation of your consultant, please carry on. Do not stop taking your drugs based on this information. We are CML patients and any clinical advice MUST come from a medical professional.
My good friend Nigel Deekes, who founded the CML-UK Facebook group, was switched to generic imatinib in early January. It appears he was one of the first to switch and being the diligent chap that I know that he is, he read the packaging.
The packaging on at least two of the generic drugs (as we understand it, this does not concern imatinib generics manufactured by Teva and Sandoz) suggest that the drug, for adults, is for blast crisis only and not chronic or accelerated phases. Blast crisis is an advanced form of CML. These generic drugs are not for blast crisis only and if you see this on your box or instructions it DOES NOT mean your disease has progressed. Also, it does not mean that your generic imatinib isn’t working. The generic drugs are the same and are safe but the indication on the leaflet in the box does not cover all phases.
Both Nigel and I agree that this is most unacceptable. Not only does this issue have the ability to mislead and worry patients, it is also indicative of the entire generic switch process. Be mindful that this issue was found by a patient and not through, what should be, a rigorous checking process, administered by NHS England. When we consider the lack of consultation and information provided to patients, this is not surprising.
All things being considered Nigel and I believe that generic imatinib patients who have incorrect information on their box should contact their hospital and ask to be put back on branded imatinib. We believe we are within our rights to do this as the indication on the leaflet is not for our stage of the disease. We could be accused of being pedantic but we want to be clear that patients should be prescribed the correctly licenced drug for our illness. Some patients have already swapped back to branded imatinib without any problems as their hospitals have acknowledged this issue.
The issues will take several months to resolve and at that point, we would recommend patients take up the offer of generic imatinib once again.
Our reasons for refusal are straightforward. We do not want life-saving drugs being used with information on them that has the potential to mislead the patient about their diagnosis. Generic imatinib is not the only drug available for treatment of CML, therefore there is not a risk in reverting back to branded.
If you are a generic imatinib patient please contact your consultant and ask to be put back on branded if your box indication is incorrect.
If you are a branded imatinib patient who is yet to switch, please discuss this issue with your consultant at your next appointment. Please do not be alarmed if your clinician still prescribes generic imatinib, they are able to prescribe ‘off label’ and they will discuss this with you. This information is design to ensure that you are included in this decision-making process.
PLEASE do not switch drugs or stop taking medication unless your consultant approves it.
All indication suggests that generic imatinib is good and safe to take under the direction of your consultant. It is the labelling/indication that is wrong.
For more information on generic imatinib and generic drugs please visit these useful resources from Leukaemia Care:
When I visited the hospital in October 2016 I decided to document my visit for the benefit of other Chronic Myeloid Leukaemia (CML) patients. The video does contain footage of blood being drawn.
I received my results early and my leukaemia continues to be undetectable. I hope that this video helps newly diagnosed patients or patients who have concerns about regular blood tests. Please contact me if you have any comments or questions.
Do you think that access to effective blood cancer treatment should be available to patients throughout the whole of the UK?
The #CancerLottery campaign from Leukaemia Care is calling for the Government to do more to ensure fair and equal access to potentially lifesaving treatment for blood cancer patients.
On July 1st, the way cancer drugs are funded for NHS patients in England will change, meaning existing and newly diagnosed blood cancer patients could miss out on the most effective treatments.
The proposed changes to the appraisal process could mean:
Access to many blood cancer drugs could be reduced.
Inequalities in access to rarer cancer treatment throughout the UK.
Leukaemia Care need your help and I’m happy to lend my voice to this campaign:
In this campaign video I talk open and honestly about what the changes to the Cancer Drugs fund mean for blood cancer patients (and other rarer cancers) and why we need to put pressure on the Government to do more to ensure it’s a fair system for all.
Long time no see. I hope all is well. Just wanted to drop in with some shameless self promotion and to celebrate my association with Bloodwise (formally Leukaemia and Lymphoma Research).
I recorded this video some time ago now, it’s just been put live. I’m delighted with the results and I’d urge you to have a look at this and the other videos to learn a little more about the lives of blood cancer patients.
Some very pertinent housekeeping. Earlier in the year David Ryner from CML Support asked me, Bloodwise, Leukaemia Care and CML-UK (Facebook) to co-sign a letter he penned to Simon Stevens (Chief Executive of NHS England) and Prime Minister, David Cameron. The letters and responses are all posted below.
The letter from Professor Sean Duffy confirms that the new model for the evaluation of drugs, including cancer drugs, following the Accelerated Access Review’ s report will be launched on April 1st 2016. Not good enough. I want to make this clear. We currently don’t have a method of evaluating new drugs and the old method was flawed (see the issues ponatinib had with small population numbers). This gap in service and the delisting of life-saving drugs is going to kill people.
I’m making this extra clear because a politician I’ve spoken to recently questioned me, quite ferociously, on the launch date of the new model. I know that this politician subscribes to my blog updates and I hope that they now have all of the facts they need to do something about the issue and register their protest.
A huge thanks to David Ryner from CML Support for coordinating this activity.
Kris Griffin
LETTER TO SIMON STEVENS
Dear Mr Stevens,
We are writing to you regarding the recent announcements relating to the Cancer Drugs Fund (CDF) and the specific decisions that have been taken on treatments for chronic myeloid leukaemia (CML).
As patient groups representing the concerns of patients with CML, we are particularly alarmed by both the inclusion of CML treatments in the next review of the CDF for delisting at the end of this month, and by the suggestion that there may not be any further meetings of the CDF panel to consider new treatments or indications for the remainder of the 2015/16 financial year.
In particular, I would like to draw your attention to the situation currently facing two medicines which treat patients with more advanced CML, who therefore face severely limited treatment options. Bosutinib is scheduled for review at the next meeting of the CDF panel at the end of this month. Ponatinib, a drug which has never been appraised by NICE due to its small patient population, is only available through the CDF for patients with the T315i mutation, rather than in its full licensed indication. Ponatinib was due to be assessed by the CDF panel for its full licence in June, before the cancellation of the last scheduled meeting.
This situation for those patients needing access to ponatinib is particularly acute; with NHS England’s Commissioning Intentions for 2015/16 committing to producing algorithms for all chemotherapy within the year, ponatinib now faces the prospect of being effectively excluded from the CML algorithm entirely, with the exception of the T35i mutation.
When the threat to bosutinib is factored in and with the exception of the minuscule number exhibiting the T315i mutation, patients in England now face a lack of access to two of the five drugs that are currently available to them. The clinical effectiveness of these drugs in being able to secure optimal responses at speed and scale relative to the current entry level CML inhibitor, imatinib, now over a decade old, is well established.
The Government’s Accelerated Access Review (AAR) demonstrates a welcome recognition that current evaluation processes require revision to ensure they are fit for purpose in assessing the new generation of innovative products, including targeted therapies for CML. We recognise, too, that the CDF needs to adapt its processes to remain in step with the wider Government agenda.
It is therefore bewildering, contradictory and illogical for NHS England’s real time activity to be moving in the opposite direction of travel in reversing, rather than accelerating, access to targeted therapies for CML. This is made even more remarkable given the fact that, relative to other CDF list treatments, the performance of this class of drugs has been considered outstanding when judged against standard measures of survival. As a result, the overwhelming majority of patients are now able to secure decades of benefit from these home-based oral therapies, with their lives returning to near normal (and patients enjoying near-normal life expectancy) following treatment.
Such marked improvements in CML patient outcomes have been achieved by the steady increase in targeted therapies. We believe that to withdraw the opportunity from patients who would benefit from targeted CML therapies such as ponatinib and bosutinib is both discriminatory and perverse and we would strongly urge you to reconsider this decision by NHS England.
We are writing to you following the intervention you recently made to NHS England regarding its consideration of the funding of medicines for a number of rarer diseases, to make you aware of the situation patients with chronic myeloid leukaemia (CML), a rare form of blood cancer, currently face.
As patient groups representing patients with CML, we were concerned with recent announcements relating to the Cancer Drugs Fund (CDF) and the specific decisions that have been taken regarding treatments for CML. We have great concerns about the fact that the CDF panel will not now consider any new treatments or indications for the remainder of the 2015/16 financial year, meaning new and innovative treatments for CML will remain unavailable to patients, and that CML treatments currently available on the Fund are at risk of being delisted.
CML is treated with targeted therapies which have ensured marked improvements in patient outcomes but mean patient sub populations are small. Patients need to have a wide range of treatment options available to them because of the problem of resistance to medicines, as well as contraindications and co-morbidities which mean some patients are unable to tolerate certain drugs currently within the treatment pathway.
Patients with more advanced CML face severely limited treatment options, with two of the five CML drugs either at-risk or unavailable to all patients who would benefit. Bosutinib, a second-line treatment for CML, is at risk of being delisted from the CDF following its inclusion in the review of current treatments conducted by the CDF panel on the 29th and 30th July. Ponatinib, a drug which has never been appraised by NICE due to its small patient population, is currently only available through the CDF for patients with the T315i mutation, rather than in its full licensed indication. Ponatinib was due to be assessed by the CDF panel for its full licence in June, before the cancellation of the last scheduled meeting, and now has no opportunity to be appraised for clinical and cost effectiveness, meaning the wider CML patient population are unable to access the drug other than through Individual Funding Requests (IFRs).
The clinical effectiveness of both drugs in being able to secure optimal responses at speed and scale relative to the current entry level CML inhibitor, imatinib, now over a decade old, is well established. The following comment from a patient on ponatinib, which was used in the CML Support Group submission to the SMC in Scotland – who approved the drug for its full licence – confirms its clinical effectiveness; “Ponatinib for me represents a quantum leap forward in the treatment of my CML and the impact of this condition on my family and work life. For me, even though I am likely to have to take this for life, ponatinib represents the optimum treatment that I could have expected and hoped for beyond the major trauma and loss of employment that the only other “ total “ cure , a bone marrow transplant, represents.”
We were reassured to read your comments in a letter to the Specialised Healthcare Alliance dated 28th April 2015, in which you stated “I am absolutely committed to ensuring that patients with rare diseases have access to the latest and most effective treatments that represent value to the NHS and deliver benefits to patients.” Any assistance you could offer in ensuring CML patients have access to the full range of effective treatments would be greatly appreciated. In addition, we would be grateful of any clarity you are able to secure on our behalf from NHS England regarding the new system of appraisal – particularly in terms of when the CDF will consider new medicine appraisals, and how medicines for rarer cancers and those with small patient populations will fit into the new system of evaluation – which will replace the current CDF when it ends in March 2016.
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