There has been some great news for blood cancer patients coming from Parliament recently. Firstly, Henry Smith, the MP for Crawley (and someone I met with last year), has set up an All Party Parliamentary Group (APPG) specifically on blood cancer. The group will look into the key issues affecting patients with blood cancers, and is an acknowledgement that MPs understand that haematological cancers are very different to solid tumours – in the impact they have on patients as well as the need for different kinds of information, support and treatments to be available. MPs who will sit on the APPG include Jim Shannon, Colleen Fletcher and Birmingham Yardley MP Jess Phillips Bloodwise will provide the secretariat to the group. I hope to engage with the APPG soon, and will update you as to how I get on.
In addition to this, Jim Shannon and Henry Smith hosted a debate in the House of Commons last week to discuss blood cancers and the Cancer Drugs Fund (CDF). The debate, which took place in Westminster Hall, saw a number of MPs from different political parties discuss issues relating to the diagnosis, management and treatment of different blood cancers. Many of the MPs had had personal experience of blood cancer and spoke about how their families had been affected and the need to improve patient access to vital, life-extending medicines. Improved awareness of the signs and symptoms of blood cancers for GPs was also noted as being crucial to improving diagnosis rates and earlier diagnosis.
Another topic repeatedly raised during the debate was the appraisal methods used by NICE which don’t work for blood cancer medicines, which generally treat very small numbers of patients and don’t fit the usual model by which NICE evaluates the “value” of a drug. The ‘postcode lottery’ which exists in terms of patient access to treatment was also covered, something which I have campaigned extensively on, particularly in the case of Khalid Younis who could only access treatment with ponatinib by moving to Wales as the drug is not approved in England.
The creation of the APPG and the debate are very positive steps towards getting improved recognition of blood cancer. Parliamentarians focussing on the key issues can only be a good thing for patients. Whether or not your local MP is on the list of people who attended the debate or not (below), I would encourage you to write to them to ask them to support the APPG and get involved in campaigning for improvements to the lives of anyone affected by blood cancer.
The MPs who contributed to the debate were:
Jim Shannon, DUP MP for Strangford
Henry Smith, Conservative MP for Crawley
Colleen Fletcher, Labour MP for Coventry North East
Maggie Throup, Conservative MP for Erewash
Martyn Day, SNP MP for Linlithgow and East Falkirk
Nigel Dodds, DUP MP for North Belfast
Nic Dakin, Labour MP Scunthorpe
Dianne Abbott, Labour MP for Hackney North; Shadow Health Secretary.
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.
I was delighted to have been interviewed by Ed Yong for his article in The Atlantic magazine about the MinION DNA sequencer. I’ve been talking to the company, Oxford Nanopore Technologies, for quite some time now and I’m very excited by what these brilliant people might be able to achieve.
I’ve reproduced the extract where I’m featured, below, but if you visit the source link you can read the whole thing. I urge you to, it’s the future!
Kris Griffin was 32 when he went to his doctor with a bad back, and came away with a diagnosis of chronic myeloid leukaemia. Thankfully, two drugs—first imatinib, and now dasatinib—have kept his cancer under control with minimal side effects. Eight years on, Griffin is doing well. He’s an education consultant based in Kidderminster, England; husband to a partner he married just after his diagnosis; and father to a four-year-old boy. “I live a normal life,” he says.
He isn’t cured, though. His disease is caused by the abnormal merger of two chromosomes, creating a chimeric gene called BCR-ABL that makes his blood cells divide uncontrollably. That’s what dasatinib inhibits. To check that the drug still works, Griffin has to visit a hospital several times a year, so his doctors can measure the number of cells that carry the fused gene. The trips eat into his days, and the results can take weeks to arrive. “And there’s no bigger reminder to someone that they’re doing poorly than walking through those doors,” Griffin says.
He has always dreamed of carrying out the tests himself in the comfort of his own home, in the same way that people with diabetes can monitor their own blood sugar levels. A year ago at a London conference, he “saw this chap on stage with this little device,” he recalls. That was Clive Brown.
Brown spoke about using nanopore sequencing on people, to analyze the bits of DNA that are released into our bloodstreams by our dying cells. To cancer researchers, this circulating DNA acts as a liquid biopsy, which can reveal whether tumors are progressing, responding to treatments, or evolving resistance to drugs. Many companies, Illumina included, are getting in on the action, and developing blood-based tools for cancer screening.
But Brown thinks that if MinION and VolTRAX become cheap and accurate enough, people could monitor their circulating DNA themselves. “We need to get the price down by an order of magnitude, but there’s no reason why you couldn’t take a daily snapshot of the contents of your blood,” he tells me. He wants to bridge the worlds of DNA sequencing and the quantified self. “My intention is to give people a tool where they can understand their own biology and make their own inferences about it.”
Griffin lit up when he heard Brown’s vision. Maybe he could eventually monitor his own BCR-ABL levels and just upload the data to his doctors. “The power it could give to patients … Psychologically, it feels so important,” he says. He has been liaising with Oxford Nanopore ever since, and even though they’ve assured him that the technology still needs work, he is undeterred. “I want to be the guinea pig—the first person with CML to monitor my blood at home. I think this will mean everything to so many people.”
Daily monitoring might also reveal signs of an infection before symptoms occur. And it might reveal answers to questions that haven’t been asked yet. “No one has systematically inventoried circulating DNA over a long period, even in just one person,” says Brown. “What’s the baseline? It’s unknown at the minute. But we can get the data.”
The results of this trial represent an incredible leap forward for CML patients who, like me, are on dasatinib (sprycel). For the patients in this trial, nearly 50% who stopped dasatinib maintained a deep molecular response. The other 50% started taking tablets again and all regained a deep molecular response.
This represents a huge benefit for the patient who could, effectively, remain drug-free but it also represent an economic benefit. What was once considered an expensive drug could soon be considered a drug-for-life for only half of the patients who take it. This could be enough to present a new case to NHS England over funding.
Summary Background
First-line imatinib treatment can be successfully discontinued in patients with chronic myeloid leukaemia after deep molecular response has been sustained for at least 2 years. We investigated the safety and efficacy of discontinuing second-line or subsequent dasatinib after at least 1 year of deep molecular response.
Methods
The Dasatinib Discontinuation trial was a prospective multicentre trial done in Japan. Eligible patients taking dasatinib and with confirmed stable deep molecular response were enrolled between April 1, 2011, and March 31, 2012. All patients received dasatinib consolidation therapy for at least 1 year. In those with sustained deep molecular response, dasatinib was discontinued. Patients were followed up every month in year 1 (clinical cutoff), every 3 months in year 2, and every 6 months in year 3 for deep molecular response and immunological profiles. The primary endpoint was the proportion of patients with treatment-free remission at 6 months after discontinuation. Molecular relapse was defined as loss of deep molecular response at any assessment. This study is registered, number UMIN000005130.
Findings
88 patients were enrolled in the consolidation phase, 24 were excluded from the discontinuation phase due to fluctuations in BCR-ABL1 transcript levels. One patient was excluded because of positive expression of major and minor BCR-ABL1 transcripts in chronic myeloid leukaemia cells and the detection of minor BCR-ABL1 transcripts during consolidation. Thus, 63 patients discontinued dasatinib treatment. The 25 patients who were excluded from discontinuation continued to receive dasatinib and none showed disease progression. Median follow-up was 20·0 months (IQR 16·5–24·0). Of the 63 patients who discontinued and were not excluded, 30 patients maintained deep molecular response while 33 patients had molecular relapses, all within the first 7 months after discontinuation. The estimated overall treatment-free remission was 49% (95% CI 36–61) at 6 months. No severe treatment-related toxic effects were seen. Treatment was restarted in the 33 patients with relapse; rapid molecular responses were seen in all 33 patients, of whom 29 (88%) regained deep molecular response within 3 months, as did the remaining four by 6 months.
Interpretation
Dasatinib discontinuation after sustained deep molecular response for more than 1 year is feasible.
Funding
Epidemiological and Clinical Research Information Network (ECRIN).
I spent an exhausting day in Westminster meeting parliamentarians this week. Henry Smith MP, Mark Durkan MP and Nic Dakin MP all gave up their valuable time to sit with me in Portcullis House to discuss Khalid Younis, Chronic Myeloid Leukaemia (CML) and the problem we currently face with the lack of an appraisal system for new drugs.
All three MPs were incredibly kind with their time and very supportive. They all agreed to support a letter from Roger Godsiff MP (Khalid’s member of parliament) to the Prime Minister asking him to intervene in Khalid’s case as well as agreeing to submit written parliamentary questions where appropriate. All three were very concerned with the issues I raised and offered lots of advice and opinion on how we can move forward.
It’s great to have days like this. We’ve made friends with more, influential, people who now know about the struggle CML patients face as well as issues facing the wider cancer community. Although to their credit all three men were very aware of the restrictions faced getting the right drugs to the right people in a timely and cost-effective way. I certainly appreciated the balance in conversation; we all know that the funding pot is finite but to have a productive discussion on how to address this in a fair and progressive way, ensures we, as patients, become part of the solution, rather than part of the problem.
I’ll progress this by suggesting some written questions we can submit and go on record by thanking all three gentlemen very much for caring about CML patients.
I’ve spent an inordinate amount of time pontificating whether I should post this. It’s whimsy and self-indulgent, it isn’t going to become a new category; I don’t see a huge demand for blood cancer poetry, but this is part of my story and I am grateful for my monthly tablet delivery.
Hopefully you’ll find this funny or amusing and that you’ll forgive the interruption from more serious matters. Thanks, Kris
An Ode To The Man from Derby
Once a month, on a Friday; a visit from a man from Derby.
He brings me tablets that keep me alive; we have a chat, on my drive.
How’s the weather, traffic, van? Small-talk with this superb man.
We never talk about health or me; he delivers the cancer medicine you see.
He fears the answer, it’s in his eyes. If only he’d ask, big surprise.
I’m feeling good and doing well; Docs are pleased with my blood cells.
And then he’s gone, my knight from BUPA to guarantee someone else’s future.
What he’s not aware of though; he’s part of the team that keeps me on-the-go.
So thank you Derby-man, I love you very much; perhaps one day I’ll tell you as much.
But until then let’s keep our love secret and keep your visits about my treatment.
Joking aside, thank you my friend; my life comes in a box; on which you I depend. KG
In 2003 Geoff Thomas was diagnosed with chronic myeloid leukaemia (CML) and was given less than three months to live. Following treatment from Cure Leukaemia co-founder Professor Charlie Craddock, he has been in remission since January 2005. I was diagnosed in 2008 and received a very different treatment path, also from Professor Craddock. Geoff received a transplant and I take the drugs, we both understand how lucky we are to still be here.
I’m a football fan, so at first it was a thrill to meet Geoff. As the time has passed my admiration for him as a man and as an incredible charity fundraiser has grown. I’m blessed to know him, I love catching up with him, we put the world to rights and I’ve watched with pride as his Le Tour vision has taken shape.
Geoff Thomas and Kris Griffin
To celebrate being 10 years in remission his aim is to raise a huge £1million for Cure Leukaemia after riding ‘Le Tour – One Day Ahead’ and London 2 Paris. The £1million raised will go towards boosting the life-saving work at the Centre for Clinical Haematology at the QE Hospital – where he and I were treated by Professor Craddock. The money will increase the centres ability to deliver pioneering treatments for blood cancer patients at this centre of excellence in Birmingham.
So, last month Geoff cycled all twenty-one stages of the Tour de France, just one day ahead of Le Tour 2015. Along with a closed group of twenty participants, it was a once in a lifetime opportunity to complete one of the toughest physical challenges around.
Le Tour – One Day Ahead set off from Utrecht, Holland, on July 3 and since then each cyclist burned around 95,000 calories and climbed 40,000 metres in pedalling almost 2,100 miles. The team had to contend with 40-plus degree heat, wall-like ascents and frightening mountain-top thunderstorms in riding an average of 110 miles a day.
Geoff was joined by Birmingham-based duo Melissa Brand, aged 35, and Stephen Jones, 53, James Maltin, 39, of Wiltshire, Doug McKinnon, 55, from Brighton, Hayden Groves, 41, of Hertfordshire, Guildford-based Ciaran Doran, 49, Trevor Clarke, 49, from Rugby, Simon Gueller, 50, from Yorkshire, Dom Goggins, 30, of Manchester, and Helen Russell, 39, from Bromsgrove in riding the punishing Tour de France route, cycling each of the 21 stages a day before the professionals.
Helen and James required stitches after crashes during an eventful first week while Simon took on Le Tour just three weeks after suffering a collapsed lung and broken ribs and Doug had ongoing knee problems. The support staff were also kept busy treating dehydration, saddle sores, sickness and blisters to keep the riders on their bikes as they were pushed to the limit.
The team’s superhuman efforts have pushed Geoff’s fundraising total for Cure Leukaemia – the blood cancer charity he is Patron of and owes his life to – past the £650,000 mark. Le Tour – One Day Ahead followed hot on the heels of Geoff’s other major cycling challenge this summer, London 2 Paris. Both are flagship events in his bid to raise £2million for Cure Leukaemia inside two years.
A slightly controversial decision to ride two of the stages with former pr-cyclist Lance Armstrong has also been vindicated. Armstrong played a critical role in Geoff’s leukaemia battle, with the cyclist having beaten testicular cancer. Geoff was inspired by Lance Armstrong’s book It’s Not About the Bike: My Journey Back to Life and inspired Geoff to make the 2005 charity ride along the route of the Tour de France. Whilst not condoning his actions there has to come a point when we put the knives down and give people an opportunity to earn forgiveness. Armstrong raised over $500million dollars for his own charity and if his current actions mean that he is bringing publicity and donations to Le Tour then I don’t have a problem with that. It’s not a matter of principle, this one’s a matter of saving the lives of leukaemia patients and people like, UCI President, Brian Cookson could probably do with reminding themselves of that.
“We’re raised over £650,000 now and have set some really good foundations for next year and reaching that overall £2million target. London 2 Paris is only going to grow for Cure Leukaemia and Le Tour – One Day Ahead has gone worldwide. We’ve had so many people enquire about next year’s event that we might need a double-decker bus to fit the team in! Lance’s involvement has been central to that. It allowed us to put our message onto the world stage. People are more aware of what we’re trying to do and it’s up to me now to build on the foundations and raise a lot more awareness and money over the next five or ten years.”
For the record, Geoff did his very best to persuade me to join him, he was serious too, he always is when it comes down to fundraising. In my current state of fitness and aversion to bikes I had to decline. I explained that I’m more suited to the advocacy side of our work but he wasn’t having any of it. Can I see myself cycling 2,200 miles? No, but you never say never. And if anyone were to persuade me if would be Geoff.
Please sponsor Geoff, not only is his achievement an incredible one but the money is going to such a great cause, it actually makes me emotional thinking about it. You simply don’t realise how lucky you are until you sit in a cancer clinic, looking around, waiting and realising that much of it is built on charitable donations from amazing people. Please donate…
To register your interest for Le Tour – One Day Ahead 2016 visit: www.beforethetour.com
Cure Leukaemia was established in 2003 to allow patients with blood cancer in our region to access the remarkably effective new treatments which were then becoming available. To find out more please visit: www.cureleukaemia.co.uk
The ex-England footballer and his team of ten amateur cyclists brought their brutal 3,360km ride to an end when they crossed the finish line under the shadow of the Eiffel Tower on Saturday afternoon, via the Arc de Triomphe and Champs-Elysees.
It was a conversation with my good friend and fellow Chronic Myeloid Leukaemia (CML) patient Nigel Deekes that made me decide to skip the CML Horizons conference this year and instead explore the wider world of health.
Our conversation centred around whether we were CML advocates or cancer advocates, my attendance at WIRED Health 2015 in London this year suggests an even wider remit. CML is an orphan disease, just 650 of us diagnosed each year, it’s hard to get noticed. It’s even harder to position and relate our condition to the general health marketplace. When we position ourselves as having a rare disease it doesn’t make us commercially attractive to people looking to solve problems. That sounded less harsh in my head.
WIRED is a monthly American magazine that reports on how emerging technologies affect culture, the economy and politics. It is headquartered in San Francisco, California and has been in publication since January 1993. Several spin-offs have been launched including: WIRED UK, WIRED Italia, WIRED Japan and WIRED Germany.
Now in its second year, WIRED Health is designed to introduce, explain and predict trends in the medical and personal healthcare industries. It is a showcase for innovators using technology to re-imagine the health sector.
From senior NHS representatives to disruptive entrepreneurs, investors to international suppliers, the WIRED Health delegate list is a shortlist of some of the most exciting and knowledgeable figures in the international health sector. And me!
This is an exclusive event, the registration fee of over £1,000 exemplifies that, but upon entering it certainly feels like you’ve achieved the next level of a decent video game. I’m not ashamed to admit that I had to work hard to stay with the agenda – the day was long and packed to the rafters with innovation and challenge.
That started from the moment I entered the networking room; the Carbon Black wheelchair was being showcased on the conference floor. The chair has been featured in a recent copy of WIRED. It’s an incredible piece of engineering: stylish, supportive and minimal but above all light. So light I could pick it up, with ease, with one hand. After a productive conversation with the Carbon Black team about its use in education I tweeted a photo of it. From my meagre network, a deluge of retweets and favourites from across the planet. I wasn’t in Kansas anymore. Kids, this was cutting edge stuff.
Editor of WIRED magazine, David Rowan with Kris Griffin
The affable and assured editor of WIRED UK, David Rowan, kicked things off by setting the scene, that we would be told stories, that we would cover all the bases and that we would be challenged. It was, in fact, David’s exquisite questioning of the speakers that provided the most balance to the events of the day, as host he pitched it perfectly.
Clive G Brown, CTO of Nanopore Technologies, spoke about how his company’s USB stick-sized DNA sequencer will enable an “internet of living things”. He spoke of how he could see consumers using this medical device and having results go to the cloud for diagnosis. Old DNA sequencing machines cost hundreds of thousands of pounds and are huge, the MinION costs just £650. Clive has a vision for immediate results on a device that can be run anywhere, he used an analogy of building it into a toothbrush so your biology can be sequenced every morning and monitored for changes.
A device like this could be revolutionary in the field of testing epidemics, environmental monitoring and infectious disease control. It’s predictive and preemptive. It could allow general self quantification in the same way diabetes patients track their blood sugar. For any leukaemia patient, like me, who has to have regular blood tests or bone marrow biopsies, several narratives converged for me at this particular moment in time.
Imagine a device that meant we wouldn’t have to visit our consultant regularly but still allowed us to do regular blood tests. It would pick issues up sooner, share results, save the NHS lots of money and do away with bone marrow biopsies. Imagine a device that could track chromosome abnormalities and check immediately for the philadelphia chromosome. The device you see me holding in my hand could be the key to unlocking all of that. This could also be the key to mass screening and therefore the saving of many lives. No pressure there then.
CTO of Oxford Nanopore Technologies, Clive Brown with Kris griffin holding the MinION device.
Clive is clearly a man who wants to keep expectations in check but I can’t help but get excited. I spoke to the team during one of the breaks and we are going to talk. This is one to watch!
I managed to get my breath back whilst listening to Matteo Lai from Empatica talking about his wearable sensor, Embrace. It looks for small changes in the body that could signify a seizure and would call a carer automatically. Wearable technology was one of the key themes of the day and this device offered excellent monitoring and safeguarding for just £200.
We learnt from Brad Perkins at Human Longevity Inc that human genome sequencing can give us a better understanding of our biology and with our increased computational power we can identify the root cause of ageing. This was a tough one to grasp but ultimately with shared ‘big’ data and deep analysis we are able to learn more about the human body and how we can adapt to environments that potentially harm us.
The WIRED Health team deserve great credit for including a patient advocate in their section on augmenting the human. Nigel Ackland lost his arm in 2006 in an industrial injury and struggled with NHS solutions and psychological scars. He is now a pioneer of the bebionic3 prosthetic hand and presented to us, as only a patient can, the true impact it had on his life. He inspired without a PowerPoint, from the heart and with passion about how the revolution technology can have an impact on a person’s life. It’s easy to forget during a conference that at the very core level we are talking about people and not products. This was an incredible demonstration.
Sophie de Oliveira Barata, Director of the Alternative Limb Project.
At this point I took a break from the main room and ventured into the BUPA Startup Stage for an hour. This stage ran alongside the main stage and gave some of the most exciting new companies in the health sector an opportunity to present to an audience.
In a very short period of time I learnt about the following:
Buddy Enterprise: a digital life-planning tool for people with depression and anxiety. The user keeps a text-message diary of how they are feeling, helping to reinforce positive behaviours.
Chiaro: a wearable fitness product for women called Elvie that tracks, guides, corrects and visualises the user’s pelvic floor exercises.
Cupris Health: developed smartphone-connected medical devices. Their otoscope and ophthalmoscope can capture, store and send data securely for diagnosis.
Galvanic: their PIP is a device that allows people to measure and manage stress levels, they used the analogy that the device uncloaks stress and help people manage it better. The biosensor and app rely on electrodermal activity to determine its user’s emotional stress.
GoodSAM App: a tool which alerts those with medical training to nearby emergencies, so potentially life-saving interventions can be given before the arrival of emergency services.
Peak: a mobile brain-training app that’s used by millions worldwide (including me now) to track and improve their cognitive skills with fun and challenging games. By providing better insight to our cognitive ability it can detect decline and help us improve and produce optimum performance through environmental factors.
The companies varied in their development journey but all of them had identified a key area of the health market and were looking to improve and save lives. The BUPA Startup Stage really felt like we were getting a glimpse into the future.
The core content was on the main stage, I had to return. I’m sad that I may have missed some more valuable health technology presentations.
One man’s unique vision and dream of ending unnecessary iatrogenic infection worldwide via dirty needles has led to the World Health Organisation (WHO) launching their third ever global policy. 1.3 million people die each year through medical syringe misuse, that’s twice the number of people killed by malaria. Marc Koska invented a new syringe that can’t be reused and therefore can’t infect someone else. It’s the same cost, uses the same machinery to manufacture and is used in the same way, yet he found resistance. It was perceived that this disruptive technology meant the medical supply industry would have to sell more syringes, which they were reluctant to do as they were sold as a loss leaders. It was only through WHO policy change and funding that the breakthrough happened. Manufacturers are now on board, ministries are on board and they are doing a healthcare worker and public awareness programme under the Lifesaver banner.
Every $1 spent on new syringe saves $14 treating disease in each country they are used due to transference being less of an issue. Manufacturers don’t have to make more syringes after all, there is less disease and people are heather. Marc suggested that we should, “make progress profitable, things will go faster.” It’s a logical step but feels uncomfortable. It always does when we bring the word profit into the sphere of health. We don’t live in an ideological world and to this end we need to start being realistic about pharma, about treatment and about talking economics in the health sector. I agree with Marc, economic viability opens doors.
Rory Sutherland, Vice Chairman of Ogilvy & Mather UK.
Rory Sutherland is an incredible speaker and no amount of words from me can do him justice. He’s a serial TED speaker as well as one of the brightest minds on the planet in behavioural economics. His logical, disruptive analysis of many different areas provides us with a breath of fresh air on problems we have long given up on. Rather than present a solution to issues in healthcare, he spoke about a new way of thinking to solve problems. He spoke about getting lucky, testing stupid things and the appearance of choice; that we don’t notice when we get a poor choice, we simply make a poor decision. Red or white wine anyone? It was incredibly refreshing to have a session that focuses on why, rather than how.
Professor Tony Young is now the national clinical director for innovation for NHS England and the co-founder of the Anglia Ruskin MedTech Campus. Previously as a health professional and innovative maverick he wouldn’t be told it couldn’t be done. This attitude allowed him to fight through a stagnant system and improve patient care through innovation and bold funding. His incredible vision will brighten our health services and benefit the system. He’s realises that we are able to innovate at scale and get better at prevention, which will create a better, faster, smarter NHS.
A slide from Tony Young, NHS England on creating a system for delivery.
Sonia Trigueros delivered a science-heavy session on a nanoscale approach to cancer. It was perhaps unfair to expect her to drop this information on our heads in just 20 mins, she gave it a valiant try. It’s clear that this is an incredibly important area of research and the work at nano level and with nano-hybrids can unlock huge advancement in cancer therapy. It was worrying to hear that the biggest thing holding her work back is finance, she spends 80% of her time looking for funding!
Neuroscientists from the world’s most respected universities shared their discoveries about the brain. Sarah-Jayne Blakemore from University College London debunked myths about Brain Gym, left and right brain people and how we are seduced by neuroscience. Her field of interest was education and adolescence in particular, looking at how an environment can shape the development of the brain. Can we adapt education to fit the best way a child develops?
Eleanor A Maguire from University College London followed up with memory and the function of the hippocampus. She looked at how damage disrupts memory and why some people are better at remembering than others. She explained the change of brain structure through intense environmental factors and used London taxi drivers as an example; when examined their brains show a level of plasticity after taking on ‘the knowledge’. It normalised when they retire.
John F Cryan from University College Cork rounded this area off with a session on the relationship between the gut and the brain. We speak of a gut feeling but discovering the medical relationship was fascinating; brain health can be linked to healthy microbiota in the gut. On a more practical level, treatment for Clostridium difficile infection has a 90% success rate when a faecal transplant is administered…that’s a poo transplant.
Optimising Performance was always going to submit to an element of masculine chest beating, especially when two Formula One brands followed each other. Thankfully Adam Gazzaley from the University of California and his study of the processes of the neural mechanisms of memory and how they affect childhood development, dementia and ageing served as an excellent opt in to the content that followed. His study explored how cognitive abilities can be enhanced via engagement with custom-designed video games. The results were astonishing and once again showed an incredible level of plasticity to the brain and showed through optimisation there was great potential for brain function at any age.
Founding Director of Neuroscience Imaging Center, UCSF, Adam Gazzaley.
Dr Andy Walshe, the high performance director at Red Bull and Geoff McGrath, vice president for McLaren Applied Technologies captivated the audience with the secrets behind elite performance. Walshe spoke about the Red Bull Stratos project, when Felix Baumgartner jumped out of a space capsule from an altitude of approximately 71,580 feet. He was part of the team that coached and trained Baumgartner and looked at extreme training and preparing elite athletes. Whilst this session was light on data, the concept that we should treat doctors and scientists like elite athletes and monitor performance and provide optimum environments in which to function, holds much water. Likewise, McGrath spoke about racing cars; constantly monitoring and evaluating performance from race-to-race. Their innovative developments and breakthroughs in performance can be applied to the healthcare sector and it was fascinating to learn about real-time data processing and predictive analytics being applied to remote biotelemetry of patients in clinical trials, mainly through wearable technology.
Finally, we were presented with the winner of the judged BUPA Startup Stage presentations; Ana Maiques from Neuroelectrics presented her diagnostic and treatment telemedicine platform that helps patients recover from health issues. This incredible real-time device is essentially a cap that fits on the head and can be used for home treatment. It could revolutionise the way we look at stroke and neuropathic pain.
THE quote from Rory Sutherland at WIRED Health 2015.
It was interesting to note that through the day there were several common themes: that disruption can yield excellent results, that there is a big question about who owns the data our bodies produce, that gamification of particular areas is big business and can produce results and that we are finally beginning to understand and learn how our environment can optimise our treatment and performance. These wide ranging breakthroughs and challenges have the potential to shape our destiny, I felt privileged to share a room with the people breaking doors down
And that was it. An incredible day. I have to thank Ariad Pharmaceuticals for sponsoring my attendance. Their foresight to invest in an independent advocate will indirectly affect many CML patients and other networks. I can start to bring a wider approach to my work now; I’ve made some outstanding contacts and I’ve already started to develop some ideas that could have a huge impact on our patient group. I’m incredibly glad I took Rory Sutherland’s advice before I’d even heard it, “test counterintuitive things, because no one else will.”
On World CML Day 9/22, leukaemia patients worldwide unite to address the courage and hope required to live with chronic myeloid leukaemia, and call for access to best available treatment and care for all patients
Group by group, advocate by advocate, and survivor by survivor: on World CML Day on 22 September, the global patient community is raising awareness about the needs of people living with chronic myeloid leukaemia (CML). Simultaneous events, publications and meetings on all continents put a spotlight on the real needs of patients and their relatives, and demonstrate the power and unity of a unique worldwide community that knows no borders. Their brand-new book “Faces of Courage and Hope” further provides an insight into the journeys of 16 CML patients in 15 countries.
Members of the CML Advocates Network, which is today comprised of 90 patient advocacy groups in 68 countries, are honouring World CML Day on September 22nd 2014 through actionable events taking place in their communities. All events worldwide aim to underscore the importance of the needs of people living with CML. The needs of patients in different regions vary largely – from basic challenges of access to treatment and care, over uncertainty on the quality of treatments, to living with cancer as a chronic disease. Although CML is today often referred to as a model disease how blocking essential mechanisms of a tumour can bring cancer to a halt, not all that glitters is gold. Even though there has been a medical revolution in treating CML over the past decade, not every patient has access to best available treatment and care, and many patients struggle to live with cancer as a chronic, life-long disease.
There are obvious disparities in terms of access to treatment and diagnostics. We cannot turn our eyes from the fact that socio-economic barriers are present in many countries, where patients are lost in debates around high drug prices and drug quality of copy drugs, combined with the lack of access to quality diagnostics. Just in May 2014, CML patients worldwide called for quality and consistency when new drugs are introduced to treat their cancer. Since none of the new drugs provide for a cure of CML yet, even in countries where access to expensive cancer treatments is ensured, patients are facing challenges with the impact of a life-long treatment on their quality of life. The community’s goal is clear: All CML patients shall have access to optimal and affordable treatment and care, giving them a quality of life as close as possible to normality. There is still a long way to go.
Key initiatives on World CML Day 2014
Again in 2014, plenty of events are being carried out by patient organizations throughout the world in order to raise awareness of the needs of people living with CML worldwide. The initiatives are listed on the CML Advocates Network website at http://www.cmladvocates.net/worldcmlday2014/worldcmlday2014/initiatives On World CML Day 2014, the CML Advocates Network publishes an English-language book Faces of Courage and Hope that illustrates the faces and cancer journeys of 16 CML patients from 15 countries. Men and women of different ages, ethnicities and backgrounds, each share their unique experience in coping with life-altering circumstances and how they refocused their lives. The book has been shipped to CML patient organizations in 56 countries, and will be available on Amazon.co.uk for worldwide shipping from 22 September 2014. For more information see: http://www.cmladvocates.net/book-faces-of-courage-and-hope
On 9/22, the CML Advocates Network also publishes a patient-friendly summary of the European LeukemiaNET’s CML Treatment Recommendations in English, Italian, French, German, Hebrew, Dutch, Russian, Polish, Spanish, Portuguese and Arabic. The summary will allow patients to understand the consensus recommendations provided by a global group of CML experts, coordinated by the European LeukemiaNET.
In addition, the CML Advocates Network provided buttons with the community’s World CML Day logo – a total of 35,000 ‘World CML Day’ buttons were distributed to organisations in 34 countries on all continents to raise awareness about CML.
22 September – the global date for awareness about CML
The date chosen for World CML Day (9/22) adds symbolic significance to the campaigns of the patient community: World CML Day is honoured on September 22nd because 9/22 represents the genetic change of Chromosomes 9 and 22 that is the cause of Chronic Myeloid Leukemia (CML), a rare cancer that is characterised by an unregulated growth of white blood cells. Just about 15 years ago, CML was a lethal disease for the majority of patients. Nowadays, CML is no longer a death sentence. If patients are treated effectively with recommended treatments, they can have a life expectancy similar to that of the general population.
Since 2008, patient organisations around the world have initiated events and projects on World CML Day to raise awareness of the needs of patients living with CML and to sensitize not only the public, but also politicians and medical professionals regarding CML. “All united, all unique!” is the theme that brings the groups together. It is a reminder of how each person and each group experiencing a rare cancer will have their own journey. As Jan Geissler, CML patient and co-founder of the CML Advocates Network shares, “Since the first meeting of a handful of CML groups back in 2003, it is impressive to see the growth in intensity of activity in the CML patient community. Today 90 groups are members of the worldwide network. We are not only meeting once in a year at our CML Horizons conference – we are supporting each other across borders, and are jointly collaborating with all stakeholders, throughout the year. Working together is the key to improving support and care for CML patients in all regions.”
Thanks to all the groups around the world participating in World CML Day, together we are, “All united, all unique!”
About the CML Advocates Network
The CML Advocates Network is a patient-run network and platform for patient organisations supporting patients and relatives affected by Chronic Myeloid Leukemia (CML). Launched in 2007 by four founding patient organizations, it has now grown to a network of 90 leukaemia patient groups in 68 countries, offering support to patient leaders by sharing of best practice, information and advice for CML patient leaders. Individual patient support as well as country-specific policy work is being covered by its member organisations on the country level. The CML Advocates Network is hosted by the patient-driven, non-profit Leukaemia Patient Advocates Foundation in Bern, Switzerland.
Early next year it’ll be 7 years since I was diagnosed with Chronic Myeloid Leukaemia. I was 32.
Today is World CML Day. The story goes that, for no reason, two of my chromosomes had broken, swapped over and created a new, naughty, one called the Philadelphia Chromosome. This sent rubbish message to my body and could have easily killed me . My white blood count was 192 on diagnosis. It should have been 7.
The (nearly) 7 intervening years have been life changing. I grew up a lot. Got married. Had a son. Fund-raised. Lobbied government. Met great people. Got better. And became a better person.
For me and a small amount of people it’s CML day every day. There are only 650 of us newly diagnosed in the UK every year. But the breakthroughs being made in the CML world have implications on cancer treatment everywhere.
I’m treated daily with two small white tablet called dasatinib. They’ve put me back together. Two small white tablets are treating my cancer. All being well I should have normal life expectancy. My hopes and dreams, outside of Luca playing for Norwich one day, are that all cancers can be treated and cured with two small white tablets. Imagine that. That’s why I keep working, volunteering and supporting, we’ve achieved so much but there is still a long way to go.
Thanks to everyone who has helped me on my journey. I’ll finish with three photo, possibly the three biggest moments in my life – all three happened after diagnosis. Have a great day everyone. K.
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