When I got up this morning, trending on my Twitter feed was the news that the WWE (World Wrestling Entertainment) superstar, Roman Reigns (real name Joe Anoa’i), was in remission from leukaemia. In was in October 2018, in front of a packed arena, holding the Universal Championship belt, that he told the world that he needed to take time away to face the disease.
Just five months later he’s back and we should be celebrating this. But some people aren’t. Some wrestling fans think this is a work. Just to bring you inside the business a little, a work is an act that manipulates an audience in order to elicit a desired response. This is not a work. And my first feeling toward the people who were saying this was to scoop them up, slam them down on the canvas and cover them for the 1-2-3.
But I won’t. You see, there’s a fundamental flaw in all of this, Roman’s remission appears to be too good to be true. Looking great with all of his hair, five months after diagnosis doesn’t fit in with the traditional narrative of a blood cancer patient. Cancer doesn’t work like that, does it?
Actually, yes, some blood cancers do. I’ve had a similar type of blood cancer to Roman called chronic myeloid leukaemia (CML) for 11 years now. I take a small white tablet every morning called a tyrosine kinase inhibitor (TKI) and it puts my leukaemia back in its box on a molecular level. I’ve had bad days where I’ve felt tired or a bit sick but I’ve carried on. I work full time in education and haven’t taken a day off sick through anything related to the leukaemia. It took me about 9 months to reach a haematological level of remission, in that my blood looked OK. It took 6 years to get to a molecular level of remission and now my leukaemia is pretty much undetectable. I’ve never lost my hair and I’ve never had traditional chemotherapy.
You see where I’m going with this? Roman is an elite athlete and it might surprise you that I’m not. We’ve both fought our leukaemia in our own way and in our own timeframe. But there is one thing that I guarantee will annoy any leukaemia patient who is in remission, that’s someone saying, “well, you don’t look sick!” Right now, that’s happening online. Can’t we celebrate Roman looking great and happy or would we prefer him hooked up to a drip, pushed out in a wheelchair? That’s our traditional view and if our traditional view has been upended, it isn’t a lie.
The treatment that has given Roman and me our lives back was hailed in 2001 by Time Magazine as the magic bullet for cancer. Times are changing, we’re the trailblazers and millions of people are now living because of that little white tablet. They aren’t having devastating does of chemotherapy and in most cases, after taking the tablet they are able to go to work or smash someone around in a wrestling ring. It’s still not perfect, some people get side effects from the drugs but as the treatment improves, so will the quality of life.
We’re winning this battle and if we can win this one, we can win other battles against cancer. So take the time out to celebrate this, think of a world where we could treat cancer with a tablet; isn’t that what we’ve been wishing for? I’m living proof. Roman Reigns is living proof and so are millions of patients across the world.
But, let’s not forget, and Roman knows this all too well, leukaemia can relapse. We’re all living on a knife edge from appointment to appointment. My appointments are six months apart and I still get nervous, I’m sure that I always will. It’s a strange way to live…but it’s better than the alternative.
If Roman wants to make an even bigger difference he’ll tell his story. He’ll educate people, in detail, on the journey that he’s been through and he’ll tell them why, after five months of being diagnosed with blood cancer, he looks fantastic. Give people even more hope and help them understand that whilst we are a long way from winning the war, we are fighting back.
Please share this, it’s a great opportunity to educate people on blood cancer which is the third biggest cancer killer behind lung and bowel cancer in the UK.
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.
I love news like this, especially when it’s been four-years in the making.
Iclusig (ponatinib) for the treatment of Chronic Myeloid Leukaemia (CML) in adult patients with chronic phase, accelerated phase, or blast phase CML who are resistant to dasatinib or nilotinib; who are intolerant to dasatinib or nilotinib and for whom subsequent treatment with imatinib is not clinically appropriate; or who have the T315I mutation.
For CML patient in England, this means we now have another safety net that is readily available for consultants to prescribe immediately. This is going to make a big difference to treatment options and the mental well-being of many patients.
Just a quick shout to all of the people who work for and are associated with Incyte (formally ARIAD) who’ve never given up on this and have worked so hard to get it to us. Congratulations and thank you.
NICE Issues Positive Final Recommendation for Iclusig (ponatinib) for Chronic Myeloid Leukaemia (CML) in England
CML patients across the UK who are resistant or intolerant to second generation tyrosine kinase inhibitor (TKI) therapies will now have equal access to Iclusig
LONDON, UK [28April 2017] – Incyte Corporation (Nasdaq:INCY) announces that the National Institute for Health and Care Excellence (NICE) Technology Appraisal Committee (TAC) has published a positive Final Appraisal Determination (FAD) recommending Iclusigâ (ponatinib) for the treatment of Chronic Myeloid Leukaemia (CML) in adult patients with chronic phase, accelerated phase, or blast phase CML who are resistant to dasatinib or nilotinib; who are intolerant to dasatinib or nilotinib and for whom subsequent treatment with imatinib is not clinically appropriate; or who have the T315I mutation.[i]
The positive FAD from NICE brings CML patients in England in line with those in Wales and Scotland who have had full-access to Iclusig, according to its license,[ii],[iii] since 2015; providing patients with CML across the UK who have failed other treatments equal access to an additional and important option.
“Today’s decision is important for patients with CML who have failed other treatments, as well as for physicians in England, who will now have access to the clinical benefits of Iclusig,” commented Mark Tanner, General Manager of Incyte Bioscience UK. “Together with the CML community, we have worked very hard over the last four years to encourage NICE to reconsider their original evaluation and are delighted that NICE has acknowledged the unmet need and the value that Iclusig brings.”
CML is a rare blood cancer with around 700 new cases each year in the UK.[iv]CML affects economically active people, with around 50 percent of UK cases in people aged under 65 years.iv Many patients with a new diagnosis of CML have a prolonged clinical benefit from targeted therapy with tyrosine kinase inhibitors (TKIs). However, there has been a high unmet need and poor prognosis for patients whose advanced disease is resistant and intolerant to other therapies.[v] Once available treatment options are exhausted, the prognosis can be poor.v Despite advances in treatment, there remains a need for additional effective therapies for the management of CML.[vi] Iclusig fulfils an important need in the treatment pathway for CML patients and provides clinicians and patients with a full suite of treatment options for CML.
Professor Jane Apperley, Department of Haematology, Imperial College School of Medicine, Hammersmith Hospital, London said, “This is an exciting and long-awaited outcome, which allows physicians to manage patients in a logical and clinical-evidence based manner with the goals of improving long-term survival and providing a good quality of life.”
Iclusig was approved by the European Commission[vii] in 2013 as an orphan drug for the treatment of adults with chronic phase, accelerated phase, or blast phase CML who are resistant to dasatinib or nilotinib; who are intolerant to dasatinib or nilotinib and for whom subsequent treatment with imatinib is not clinically appropriate. In Ph+ALL (Philadelphia chromosome‒positive Acute Lymphoblastic Leukaemia) patients, Iclusig is licensed for adult patients with Ph+ ALL who are resistant to dasatinib; who are intolerant to dasatinib and for whom subsequent treatment with imatinib is not clinically appropriate. Iclusig is also licensed for people with CML and PH+ALL who have T315I mutation.[viii]
About CML and Ph+ ALL
CML is a cancer of the white blood cells that is diagnosed in approximately 7,000 patients each year in Europe.[ix]CML is characterized by an excessive and unregulated production of white blood cells by the bone marrow due to a genetic abnormality that produces the BCR-ABL protein. After a chronic phase of production of too many white blood cells, CML typically evolves to the more aggressive phases referred to as accelerated phase and blast crisis. Ph+ ALL is a subtype of acute lymphoblastic leukaemia that carries the Ph+ chromosome that produces BCR-ABL. It has a more aggressive course than CML and is often treated with a combination of chemotherapy and tyrosine kinase inhibitors. The BCR-ABL protein is expressed in both of these diseases.
About Iclusig® (ponatinib) tablets
Iclusig targets not only native BCR-ABL but also its isoforms that carry mutations that confer resistance to treatment, including the T315I mutation, which has been associated with resistance to other approved TKIs.
In the EU, Iclusig is approved for the treatment of adult patients with chronic phase, accelerated phase or blast phase chronic myeloid leukemia (CML) who are resistant to dasatinib or nilotinib; who are intolerant to dasatinib or nilotinib and for whom subsequent treatment with imatinib is not clinically appropriate; or who have the T315I mutation, or the treatment of adult patients with Philadelphia-chromosome positive acute lymphoblastic leukemia (Ph+ ALL) who are resistant to dasatinib; who are intolerant to dasatinib and for whom subsequent treatment with imatinib is not clinically appropriate; or who have the T315I mutation.
Incyte has an exclusive license from ARIAD Pharmaceuticals, Inc, a wholly owned subsidiary of Takeda Pharmaceutical Company Limited, to develop and commercialize Iclusig in the European Union and 28 other countries, including Switzerland, Norway, Turkey, Israel and Russia.
About Incyte
Incyte Corporation is a U.S.-based biopharmaceutical company focused on the discovery, development and commercialization of proprietary therapeutics. For additional information on Incyte, please visit the Company’s website at www.incyte.com.
[v] Cortes JE, KimD-W, Pinilla-Ibarz J, et al. A Phase 2 Trial of Ponatinib in Philadelphia Chromosome–Positive Leukemias. N Engl J Med 2013;369: 1783-1796. Available at: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1306494.
[ix] Rohrbacher M, Hasford J. Epidemiology of chronic myeloid leukaemia (CML). Best Pract Res Clin Haematol. 2009 Sep;22(3):295-302. Based on current estimate of population of Europe (738,199,000 in 2010).
Leukaemia Care has published this outstanding report, it’s well worth a read. As a trustee of Leukaemia Care and a CML patient, I’m incredibly proud of the hard work that has gone into publishing this. Thank you. Kris What’s the problem?
Research from sources such as Macmillan and Public Health England has shown that cancer survival worsens with increasing age. Older patients (those aged 65 and over) make up just under two-thirds of all leukaemia cases (64%). However, this group accounts for 81% of all leukaemia related deaths. The new report ‘Leukaemia: I wasn’t born yesterday’ looks at the challenges faced by older patients and makes recommendations for improvements.
What this means for patients
As part of our report, we undertook a survey of over 1,300 leukaemia patients, to uncover the inequalities that are impacting on cancer survival and patient experience.
Based on what you told us, we have made the following recommendations:
1. Improved awareness of the signs and symptoms of leukaemia, amongst the public and healthcare professionals, including the link between leukaemia and age.
2. Access to a clinical nurse specialist from diagnosis onwards for all patients.
3. Tailored information and support for patients, based on their individual need, not age. This should include guidance on finding accurate information online.
4. Equal access to clinical trials for patients of all ages, to ensure that robust evidence is available on the most appropriate treatment
What can you do to help?
1. Download a copy of the report (PDF)
2. Share the report on social media to help spread the word
3. If you’re aged 65 and over and have been affected by leukaemia, get in touch with us to share your story by emailing advocacy@leukaemiacare.org.uk or calling 01905 755977
4. Keep up to date with our campaigns by signing up to receive email communications from LC.
You may remember that I spoke at the inaugural All-Party Parliamentary Group (APPG) on Blood Cancer earlier in the year. I’m delighted to say that the first inquiry undertaken by the APPG, will look at all aspects of blood cancer, including awareness, diagnosis, patient experience, commissioning of services and clinical research.
The inquiry has a wide remit and will be summarising findings and recommendations in a report to be published later this year.
This report will provide an important overview of the blood cancer landscape and will raise a range of issues which the APPG will explore in more detail in the months and years ahead.
As part of this inquiry, the APPG will be holding oral evidence sessions and inviting written evidence from stakeholders including patients and carers. Submissions can be made via an online form, by email or through the post by 27th April.
Henry Smith MP, Chair of the All-Party Parliamentary Group on Blood Cancer said: “Blood cancer is the third biggest cancer killer in the UK, and the fifth most common cancer overall, yet awareness among the general public and policy audiences is still low. We need to make sure that NHS provision meets the needs of all cancer patients, especially in areas such as blood cancer where the patient journey differs from the majority of solid tumour cancers.
“We have a deliberately wide remit for this inquiry, the first of the APPG on Blood Cancer – this inquiry and subsequent report will provide a valuable overview of the blood cancer landscape, and I’m sure it will raise several issues that the APPG will want to explore in more detail in future inquiries.”
PLEASE engage with this process, I hope that the APPG will provide an incredibly powerful force in ensuring blood cancer patients are not forgotten about or left behind. It is imperative that patients support the process and the people behind it.
I don’t take any pleasure in having to follow-up letters that haven’t been replied to, especially letters about something so important. I also dislike having to copy senior people in to force a reply out of someone, it feels childish and wastes time.
But, I’m left with no other option. The letter speaks for itself and I’ve linked PDFs to the two letters that have gone unanswered. I hope that this provokes a dialogue that reassures patients about the generic process. Thanks, Kris
Dr Jonathan Fielden
Director of Specialised Commissioning – NHS England
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17th March 2017
Dear Dr Fielden,
RE: Imatinib – your reference JF 16-1201.1
Sorry to have to write again but it has been a month since I asked for a swift response to my letter dated 16th February 2017. I should also note that the reason I sent the letter in February is because I didn’t receive a reply to the letter dated 21st December 2016.
I am concerned by your lack of communication and so are the CML patients that I represent, numbering around 2,000. I have copied the Secretary of State for Health, the Chief Executive of NHS England and my local MP who I hope will encourage you into dialogue with me. I have attached my previous communication and if need be my local MP, Mark Garnier, will vouch for my credibility, he is aware of my advocacy and has been incredibly supportive over the years.
At a time when you are expecting blood cancer patients to make significant changes to their treatment, I am appalled by the lack of communication and care that has been shown. I hope that we can kick-start this relationship and give CML patients some reassurances that their questions and concerns are being taken seriously and explored. Given the amount of money that the switch to generics will save the NHS, it is surely the very least that can be done.
With stretched budgets, patient advocates and charities are under increasing pressure to fill gaps. I am proud to represent my fellow patients and I will not stand by and be done unto and I will not go away. We are a ground-breaking bunch of cancer survivors and I expect to be treated with the same amount of dignity and respect by NHS England that we are shown at all other touchpoints within the NHS.
I’m sure you appreciate how important it is for patients to have faith in the system, I look forward to answers in full for all my questions including this addition to my previous letter.
Some patients are reporting that consultants aren’t fully briefed on the switch. What measures have been put in place to ensure information has been disseminated and how is the data from new side-effects being monitored and centrally collated? Some patients are reporting new and different side-effects after switching.
The concerns I had in my previous letter still stand; the process that brought generic imatinib to market is flawed and this is now being realised. I hope that you can provide the reassurances that are needed.
Yours sincerely,
Kris Griffin (Mr)
078xxxxxxxx
CC: Secretary of State for Health, The Right Honourable Jeremy Hunt MP
CC: Chief Executive of NHS England, Simon Stevens
CC: MP for Wyre Forest, Mark Garnier
CC: CML-UK Facebook Group
CC: CML-Worldwide Facebook Group
CC: Access CML Drugs blog
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:
I’m not sure it would be entirely fair to document the entire proceedings; the secretariat, Bloodwise, will be documenting the detail in due course. I can say that we heard from the Parliamentary Under Secretary of State for Community Health & Care, David Mowat MP and the meeting was chaired expertly by Henry Smith MP.
The ultimate aim of the APPG will be to conduct enquiries into blood cancer-related issues. I believe that the first enquiry will cover how well (or not so well) the national cancer strategy is working for blood cancer patients (given their specific needs). This would be a great place to start and I applaud the approach.
Kris talking at the APPG on Blood Cancer
Kris with the Leukaemia Care Team (Zach and Monica)
Kris and Ben
There were a number of people representing various blood cancer organisations and charities and I hope that we can all pull together, with our parliamentarian counterparts and make a real difference to the lives of blood cancer patients. I’ll keep you posted.
I’ve posted my speech below, it’s not every word but I’m sure that you’ll catch the gist.
All of my best wishes, Kris (Griffin)
SPEECH – Wednesday 18th January 2017, House of Commons
Thank you for inviting me along today. I feel very honoured to be in such distinguished company and to be able to provide the room a patient voice.
It’s been 10 years (next month) since my CML diagnosis.
As you can imagine I’ve got many stories to tell about my blood cancer…not all of them bad…
Whilst talking this speech over with a good friend, we discussed a number of things that have happened to me that I could share with you. Not necessarily all bad.
Three CML anecdotes: bat ears, sperm banking, grapefruit.
No, probably best to leave the funny stories well alone, get on with the more serious stuff.
So, I want to tell you about the lad who was helping me out cutting a hedge down in my garden. We had a conversation. I told him that I had leukaemia.
And as he ran down my drive he shouted back, “CAN I CATCH IT?”
The problem is, people just don’t get us. The trouble is that it’s not just about taking meds anymore.
My feeling is that with CML being a treatable disease (or controllable), our needs are very different to many other cancers. I don’t believe that the health sector really understands us. Not because they are uncaring, but because we have moved so fast and so far forward.
When our treatment goes well, our wellbeing needs to be looked after and managed. There is a psychological impact of having a cancer diagnosis. Some people manage this better than others. But, this is an invisible problem for us. As we start to treat other blood cancers in a similar way, these are issues that need addressing more and more. It’s why I constantly bang on about personalised treatment. A personalised approach does provide the best outcomes and the best quality of life. I’m sure we can all agree that this is the aim.
Because if we get it right, the economic impact is huge. Potentially you could have people who previously were unable to work, now able to work. 40% of them may not be receiving any treatment at all. 20% (and growing) may be taking generic drugs which are much cheaper.
We are trailblazers and I treat my disease like a superpower. It opens doors and allows me to help people, to ensure that they are represented, to provide a voice. I work everyday and am kept on my toes by an active 5-year-old.
Even though blood cancer is the fifth most common cancer, there are 250,000 people (and growing) living with it in the UK…it’s hard to define…too many types and generally nothing to cut out.
And whilst the treatment for CML…and some other forms of blood cancer are getting more straightforward and successful…we can be in danger of forgetting that there is a real person behind each diagnosis. We forget that people can react differently to news, information, approaches and misinformation.
When I told the members of the CML-UK Facebook group I was speaking today, many of the 2,000 members replied asking me to mention a variety of subjects. I’ll do my best to represent some of those views now:
GENERICS.
No consultation with patients. No formal information. But, imatinib patients are expected to simply switch tablets and accept what they are told…this after being told that patient power is a good thing. What about the months, sometimes years of getting to a good place only to be told to start again. No official reassurances. I’m still waiting to hear if you can go back to a drug that previously worked for you. MUST DO BETTER.
SUPPORT
The psychological scars run deep, as deep as any cancer patient. But, we are the ones with invisible problems, different needs. CML, in particular, is a disease, that doesn’t necessarily have to destroy your life. If the tablets go down well, carry on. I’ve not missed a day of work through CML since diagnosis. So, empower us. We can be your support network. Take a look at the Bloodwise Ambassador scheme and the CML-UK Facebook group for evidence of burgeoning, useful communities.
GENERAL AWARENESS
There are people in the medical profession who still don’t know enough about blood cancers. I know that Leukaemia Care is trying to address this. Just some basic awareness. I was diagnosed by accident, many blood cancers are. If my GP hadn’t been curious…I wouldn’t be here now. Which leads me to… PERCEPTIONS
Many employers don’t get it. Many patients WANT to work and yet outdated, overly bureaucratic business practices stops them. How can you have cancer, you haven’t lost your hair? And many patients who are unable to work because of devastating side effects, cannot access the benefit system because CML is a “treatable” disease.
INSURANCE
There are some travel insurance policies that we can get. But not life cover. Why? Exclusions? They use the wrong data!
Many traditional cancer patients can get cover after being clear for a number of years. But us? No. Ongoing treatment. And no one wants to listen.
LIVING ON THE EDGE
No matter how many times you’ve gone through it, no matter how robust you are, no matter how long you’ve been undetectable. When you go and pick your bloods up, it still feels like you are rolling the dice. And that, every three months, every six months. In many cases, for a lifetime. It takes some getting your head around.
On one hand, we should congratulate ourselves, we’re getting our head around the science and as for CML, it feels like a winnable battle. But there are many types of blood cancers and we have to keep pushing hard on all fronts.
Blood cancer patients are the front line. In my lifetime I want to see most cancers treated in the same way that my cancer is treated (or better). Many of you have played a part in the journey so far and are certainly responsible for getting the right drugs and treatment to the right people at the right time.
Let’s make sure that these patients are empowered. Let’s not leave them to fight other battles on their own. Let’s fight for their employment rights, look after their well-being, consult them on changes, find insurance and keep breaking walls down.
I’m incredibly grateful that we now have an APPG on Blood Cancer, it has already brought together some fantastic people, here in this room. But, please, let’s keep patient needs central to the agenda.
It is serendipitous that, when my journey started, 10 years ago, after a long walk, Sir Ian Botham told me that I was going to be OK.
He was right. I feel more confident today than I was yesterday, passing the message along and telling my fellow blood cancer patients that it’ll be OK.
A quick heads-up for all CML patients in the Midlands. Leukaemia Care are holding their first CML support group at the Novotel Birmingham Hotel on Broad Street.
The event is later this month, on Saturday 28th January, and will run from 1030 until 1300. It’s free to attend and Dr Manos Nikolousis, Consultant Haematologist, will be on hand to answer your questions on CML.
Please let Leukaemia Care know if you are attending so they are able to cater for all.
After a short break, we moved to section called ‘the data will see you now’ and to Jessica Mega representing Google’s medical arm, 
Kris Famm from 
Through to 
The 
Access CML Drugs 