Bloodwise Video – Kris Griffin (me)

Long time no see. I hope all is well. Just wanted to drop in with some shameless self promotion and to celebrate my association with Bloodwise (formally Leukaemia and Lymphoma Research).

I recorded this video some time ago now, it’s just been put live. I’m delighted with the results and I’d urge you to have a look at this and the other videos to learn a little more about the lives of blood cancer patients.

Thanks, Kris

Update: MPs debate availability of cancer medicines

Following my previous blog post about Tuesday’s Westminster Hall Debate on the availability of cancer medicines, here’s an update on what happened.

A number of MPs from different political parties participated in the debate, sought by Jim Shannon, an MP committed to improving patient access to cancer drugs. This included two MPs I am scheduled to meet with on my next Westminster day in November, Mark Durkan and Nic Dakin, so it’s great to see they already have a good grasp of the issues we face.

Other MPs contributing to the debate included:

• Philip Hollobone, Conservative MP for Kettering
• Margaret Ritchie, SDLP MP for South Down
• Lady Hermon, Independent MP for North Down
• David Simpson, DUP MP for Upper Bann
• Gavin Robinson, DUP MP for Belfast East
• Sir Oliver Heald QC MP, Conservative MP for North East Hertfordshire
• Nick Thomas-Symonds, Labour MP for Torfaen
• Andrew Smith, Labour MP for Oxford East
• Andrew Gwynne, Labour MP for Denton and Reddish
• Marion Fellows, SNP MP for Motherwell and Wishaw
• Mark Tami, Labour MP for Alyn and Deeside

The debate focussed on the general inequity of access to cancer medicines which patients face, and the recent delisting of drugs from the Cancer Drugs Fund (which included a number of drugs for CML). Jim Shannon highlighted the need to develop a long-term, sustainable solution to the issue of the evaluation and funding of cancer medicines, in order to benefit patients.

Life Sciences Minister, George Freeman MP, responded to the debate on behalf on the Government and cited the commitment NHS England has made to implementing the Cancer Taskforce recommendations, which is encouraging. His view was very much that if NICE has recommended a medicine then NHS England has a duty to fund it, which brings into question drugs which NICE has chosen not to even consider appraising due to small patient numbers – such as ponatinib for CML and ALL. He also mentioned the Government’s Accelerated Access Review (AAR), which was due to report this September, but has now been postponed until 2016. Time will tell if the recommendations of the AAR live up to the Minister’s promises but an accelerated scheme that has consistently been delayed doesn’t fill me with great confidence.

Many readers of this blog sent me messages when we announced this Westminster Hall debate, they had written to their MP telling them about it and asking them to attend. If you did this and the name of your MP isn’t on the attendee list above please write to them again and ask why they didn’t attend; urge them to look into the issues surrounding the delisting of drugs from the Cancer Drugs Fund. I’d be happy to speak to them on your behalf or perhaps we can meet them together. It’s vitally important that as a small community we have a voice and are listened to.

Thanks, Kris

28/10/15 – ADDITION – you can watch a recording of the debate on Parliament Live TV here: http://parliamentlive.tv/event/index/6c473be6-564a-43d2-92e8-65aa6cec067d?in=09:30:00

Leukaemia Man – not exceptional (follow up)

This is turning into a rather extraordinary day and I hope that you don’t mind me publishing a brief update. I hope that you’ve seen my previous post regarding the situation Khalid Younis finds himself; he is unable to access ponatinib – a drug that is essentially his last resort.

The media have picked the story up. I’ve just been interviewed for ITV Central News, that’ll be going out this evening and I’ll be doing a live interview on BBC WM Drivetime around 1715. Please tune in if you are able and spread the word on social media.

The story has also been covered by the Daily Mail and the Daily Mirror, links below:

Mirror – Dying dad denied ‘life-saving cancer drug’ by NHS in postcode scandal is told his case ‘not exceptional’

Mail – Dying father-of-four is denied life-saving cancer drug by the NHS in postcode lottery scandal that’s outraged doctors

We’re breaking ground here and bringing, what is essentially a tiny disease, to public consciousness. We can and will make a difference. Khalid and his family deserve our support. Please help.

Birmingham Mail story – Leukaemia Man – NOT EXCEPTIONAL!

This is possibly the most important post I’ve carried to date. It compounds all of our fears about our CML drugs and exposes NHS England bureaucracy as a cruel, unsympathetic, misguided fool. This is the story of a father-of-four, who lives in England, and has received the devastating news that he does not qualify for Ponatinib, a treatment freely available in Scotland and Wales. This drug is his last chance and he’s been told that his case is “not exceptional.” Thank you to the Birmingham Mail and to reporter Alison Stacey for covering this and for contacting me and asking for my comment.

This is not an isolated incident and I am in touch with another gentleman who is in a similar position who has been told that he’s not exceptional either, I’ll be writing about him next week.

This, in a city where we have one of the finest blood cancer charities in Europe, Cure Leukaemia, desperately raising money to save lives. Khalid attends the same hospital as me, the QE in Birmingham; I can only imagine their despair at not being able to give him the drugs that he needs.

And the response from NHS England: “NHS England and NICE will shortly be consulting on a proposed new system for commissioning cancer drugs…” SHORTLY!! Written by people who don’t realise the consequence of their actions – cancelled reviews, cancelled meetings and a new process that only exists as a blank sheet of paper. All this whilst people die. If Khalid lived in Scotland or Wales he’d be taking Potaninib right now; afforded another lifeline.

We’re putting a patient pack together right now to help you campaign but in the meantime share the blog post, share the original article and show your support for Khalid. NHS England have to hand the keys to the medicine cabinet over, this is not about extending lives, it’s about saving them – to refuse to do is a death sentence.

Kris Griffin

Click the headline to take you to the original article.

Kings Heath dad denied ‘wonder’ cancer drug and told his case is ‘not exceptional’

Father-of-four Khalid Younis, 43, does not qualify for Ponatinib because of postcode lottery

A dying Birmingham dad has been denied a potentially life-saving cancer drug by the NHS in a postcode lottery scandal – and told his case is ‘not exceptional’.

Father-of-four Khalid Younis, from Kings Heath, has received the devastating news that he does not qualify for Ponatinib, a treatment freely available in Scotland and Wales.

The new ‘wonder’ drug is the only treatment left for the 43-year-old who is battling Chronic Myleoid Leukaemia (CML), as his body has become resistant to all other medicines.

Former carpet fitter Khalid, a patient at Birmingham’s Queen Elizabeth Hospital, said: “They say I’m not exceptional, but talk to my Mum, talk to my kids, they’ll tell you I’m exceptional.

“It seems crazy. I have even considered moving to Wales so that I can get the treatment, but I worry about putting my family through it.

“We are in a very sad, vulnerable and stressful situation.”

Khalid’s case comes just days after NHS England announced it is cutting 16 drugs from its Cancer Drugs Fund after overspending by £70 million.

For Khalid the postcode cancer lottery seems desperately unfair as living in England means his survival odds have been drastically reduced.

As he is unable to have a stem cell transplant due to a lung condition, the drug would have been his last shot at beating the leukaemia.

“In a way it’s more painful to know that there’s something out there that could treat me, but I just can’t get Ponatinib,’’ said Khalid.

“This is England, the most beautiful country in the world. They can spend millions on Wembley Stadium, but when it comes to a Dad’s cancer treatment there is not enough money.

“I am truly blessed that I have my amazing family and friends around me. I worry that there must be people out there going through the same thing as me, but on their own.”

Patient advocate Kris Griffin explained this in not an uncommon story for CML patients, as NHS England restricts the amount of drugs patients can access.

“We are not talking about extending his life for a few months so he can prepare to say goodbye,” said Kris.

“We talk about finding a cure for cancer and one comes along we say it is too expensive. It’s insane.

“How is a man not ‘exceptionable’, when he has no other option? This could save his life, and to refuse him is inexcusable.”

A spokesman for NHS England said: “We have every sympathy with anyone in this position.

“NHS England and NICE will shortly be consulting on a proposed new system for commissioning cancer drugs. The new system will be designed to provide the NHS with a more systematic approach to getting the best price for cancer drugs, meaning more treatments can be made available, and give a greater focus on evaluation, leading to the best drugs progressing swiftly to routine commissioning.”
21:00, 16 SEPTEMBER 2015
BY ALISON STACEY

Khalid Younis (Birmingham Mail)

Cancer Drugs Fund Cuts CML Drugs (and what we can do about it)

Details from the recent announcement:

The Cancer Drugs Fund in England will no longer pay for 16 medicines, used in 23 separate cancer treatments.
All the drugs on the Cancer Drugs Fund list have been rejected by the NHS as a whole because they do not provide enough benefit for the amount they cost.
At the beginning of 2015, there were 84 funded therapies, but after a series of culls there are now just 41.
The fund was set up by Prime Minister David Cameron to provide access to such medication. However, NHS England announced that the fund was due to go £100m over budget in 2014-15.
The drugs will be formally removed on 4 November and the announcement will not affect patients currently receiving treatment through the fund.
Patients affected: Blood cancer – 1,759 patients.
The Rarer Cancers Foundation said the news was a “hammer blow” and estimated that 5,500 patients across a spectrum of cancers would miss out.

Source: Cancer drugs fund cuts 23 treatments from BBC News.
The official announcement from NHS England can be found here.

Before I start it is imperative to start that the announcement will not affect patients currently receiving treatment through the fund.

I’ve read a lot of things over the last few days. I’ve heard many opinions and chewed a lot of fat. Any way you look at this recent decision, it’s hard to take any positives from it; that’s clearly why emotions are running so high. But, let’s remember what Yoda taught us:

“Fear is the path to the dark side. Fear leads to anger. Anger leads to hate. Hate leads to suffering.“

This is not a situation for finger-pointing or blaming people, countries or administrations we perceive to be at fault or guilty for a variety of suspected sins. One of the silliest suggestions I’ve read is that if that if we weren’t talking so many refugees in to the UK we would be able to afford the CML drugs. Not the case. Health economics doesn’t work like this. I’m not a fan of the Trident programme but I’m not daft enough to think that by scrapping it and saving billions we’d immediately be rewarded with the drugs we need. No, it’s more likely we’d get another station for High Speed 2. Joke. And for the record, I’m in favour of the UK playing our part and taking refugees.

We stand alone on this, fight our corner strategically and productively and make sure our voices are heard. Do I believe that campaigning hard will result in a reversal of this decision? No. But if we allow our voices to fall silent, when the day comes to start appraising drugs again, I want CML drugs to be at the front of people’s minds. I want people to understand that this is a poor decision about drugs that SAVE LIVES. I want the people responsible for the decisions to know that we are NOT faceless. I want them to know our names.

So what should we do? I believe there are two fundamental priorities to focus on:

1. To pressure the health administration groups in England to review decisions, open the appraisal process and ensure that we are part of the process moving forward – with respect to the reconfigured way of deciding which drugs to approve and which to reject.

2. To encourage pharmaceutical companies who manufacture our drugs to reduce their prices through Patient Access Schemes (PAS).

By playing this straight down the middle we position ourselves as the result of both health administration AND pharmaceutical company decisions. The decisions are unfair and unjust but that argument won’t win us any battles. A coordinated, strategic approach will. This means responding to requests for help with media enquiries, visiting Parliament to talk to MPs and writing letters to appropriate parties. It also means making yourself a more informed patient, understanding the process and contributing towards any changes. This is the only way we, as patients, will be part of any changes.

We’re doing this for our generation and the generation of patients that follow us. We’re doing this for the person diagnosed tomorrow who currently has fewer drugs available to them than when I was diagnosed 8 years ago. If that isn’t motivation enough to bring about change then I don’t know what is.

Thanks, Kris

CML Horizons 2015 – Barcelona

This year the Chronic Myeloid Leukaemia (CML) Horizons conferences was held in Barcelona. The organisers have made this excellent collection of web streams and documents available for those of you that made have missed things. It’s a wonderful conference and I would highly recommend dipping in and watching some of the presentations; the PDF report is also an excellent read.

Watch the presentations here:

1 May 2015: www.cmladvocates.net/cmlhorizons/cml-horizons-2015/video-streams-day-1-fri

2 May 2015: www.cmladvocates.net/cmlhorizons/cml-horizons-2015/video-streams-day-2

3 May 2015: www.cmladvocates.net/cmlhorizons/cml-horizons-2015/video-streams-day-3

Alternatively, see all sessions as webstream-links and PDFs: www.cmladvocates.net/cmlhorizons/cml-horizons-2015

I’d also like to share the brand new CML Horizons 2015 conference report, which provides a summary of all sessions. www.cmladvocates.net/download/cml-horizons-conferences/cml-horizons-2015/578-cml-horizons-2015-conference-report/file

Finally, the photo gallery of CML Horizons 2015 can be found here: www.cmladvocates.net/cmlhorizons/cml-horizons-2015/photo-gallery

Huge thanks to the steering committee of the CML Advocates network for sharing this and congratulations on another superb year. Kris

WIRED Health 2015

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 from The Alternative Limb Project took this to another level with her personalised and unique prosthetics. The blurring of art, technology and health was a joy to witness.

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.”

Kris

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A Day In Westminster

I met with parliamentarians yesterday to ask for their support in helping chronic myeloid leukaemia patients access vital, life extending medicines and life insurance. Overall it was a very productive day.

The meetings, held with Mark Tami MP and Lord Avebury, provided an opportunity for me to highlight the fact that patients in England currently are missing out on innovative new drugs whilst patients in Wales have full access. I also explained the difficulties CML patients have getting life insurance cover.

New drugs such as ponatinib (Iclusig®) have the potential to offer patients another treatment option when others have failed and when the only option for many is a stem cell transplant. The system for appraising drugs in England, NICE, says that there are too few patients for them to even consider making ponatinib available on the NHS, they won’t even look at the figures. It doesn’t seem fair that across the border in Wales all patients can be prescribed the drug when here it’s not going to be looked at.

Both parliamentarians were also supportive of my bid to get insurance companies to offer CML patients life insurance, as many of us are being turned down. We’re not asking the insurers to pay out on CML related deaths, but many patients can’t get mortgages without life insurance, so it’s vital that we can be accepted with exclusions for our condition.

There’s plenty of follow up work to be done: letter writing and tabling of parliamentary questions before purdah, the pre-election period in the United Kingdom. I’ll also be meeting up with my local MP Mark Garnier, who has been incredibly supportive over the years, next week to ask for his support on both matters.

Once the dust settles on the general election in May, I’ll be going back down to Westminster to gather more support from MPs and peers. The landscape will be a little calmer by then (I hope) and we’ll put even more pressure on the insurance industry and NICE to give CML patients the access to drugs and services that we deserve. Yesterday was a great start.

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University of York – not helpful

I’ve been highly critical of NICE (National Institute for Health and Care Excellence) in the past but I’ll give credit where it’s due. In this BBC report University of York researchers suggest the Cancer Drugs Fund (CDF) is particularly poor value, diverting money from other patient services. They argue the drugs advice body, NICE, has set its price threshold too high.

Researchers at York say the funding level should be closer to £13,000 to provide the most benefit across the NHS instead of a £20,000 to £30,000 limit that NICE currently work with. Thankfully Sir Andrew Dillon, chief executive of NICE, said: “Unless you think that drug companies will be prepared to lower their prices in an unprecedented way, using a threshold of £13,000 per QALY would mean the NHS closing the door on most new treatments.” I applaud his position on this occasion.

What the researchers at the University of York have failed to take into account is the cost to develop a drug can run to hundreds of millions of pounds and someone has to pay for this. I’m not a defender of pharma and I still believe pharma should do more to make drugs more affordable but this type of scaremongering is unhelpful. We need to work with pharma and not impose dangerous limits on treatment. Readers of this blog will know that the new CML treatments which cost much more than £13,000 per year are, essentially, curing people with Chronic Myeloid Leukaemia. Who knows where these advances will take us, impose limits and we halt progress.

I need to read the report in its entirety but from this overview it appears the conclusions from York aren’t helpful, aren’t clever and don’t take into account the future of cancer treatment. Their recommendations would mean people would die. Perhaps if someone from York is reading this they would get in touch, perhaps we could meet up and perhaps they could tell me just how much my life is worth. I’d also like to ask them what price they put on a cure for cancer and if their report took this into account?

Kris Griffin
Access CML Drugs

BBC Health: NICE ‘sets price too high for NHS medicines’

Ponatinib: Efficacy in patients failing multiple TKIs

I’ve attached a pdf poster that outlines a national study on ponatinib and reports on the efficacy in patients failing multiple TKIs.

The conclusions were:

• Ponatinib has confirmed efficacy in a group of heavily pre-treated patients with CML.
• The probability of achieving cytogenetic response (CCyR) on ponatinib is greater in younger patients, those with prior CCyR and those without early haematological toxicity, confirmed on multivariate analyses (data not shown).
• Event free survival is higher in patients who received fewer TKI prior to treatment with ponatinib.

It makes for interesting study. For reasons of transparency this has been shared with me by an organisation who are working with ARIAD (who manufacture ponatinib).

Thanks, Kris

Download the PDF poster here.