Meeting Jess Phillips MP

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Whenever I attend the All Party Parliamentary Group (APPG) meetings in London for cancer I always pine for one on blood cancer, it’s quite a strange thing to pine for but there you have it. You can imagine my delight at writing the last piece of news about the announcement of an APPG for blood cancer.

I’ve been fortunate to meet two of the founding officers in the past: Jim Shannon, DUP MP for Strangford and Henry Smith, Conservative MP for Crawley. Today I was lucky to meet Jess Phillips, Labour MP for Birmingham, Yardley. She’s a relatively new MP, winning her seat in 2015 but she’s already made a huge splash; Google her, go on, it’s worth it.

I can happily inform that she lives up to the hype. She’s positive, incredibly charismatic, passionate and honest – a perfect storm for an MP. She’s a refreshing change and fights for good; sadly, no cape.

She’s passionate about blood cancer patients, her Dad has lived with chronic myeloid leukaemia (CML) since she was 11, there was clearly a calling to the APPG. I loved how we laughed about life, how we discussed equality and fairness and how important it is and how political divides shouldn’t create barriers; how we can make a difference.

I left her office on cloud nine and I’ve just finished writing an email to her outlining our discussion points and some suggested lines of investigation. I have faith and I think we’re in good hands.

Thanks to Bloodwise for supporting the APPG and for all those involved in pushing the agenda for blood cancer patients.

Kris

Jess Phillips MP and Kris Griffin

Jess Phillips MP and Kris Griffin

MPs take action on blood cancers

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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.
  • George Freeman, Life Sciences Minister

Thanks, Kris

Kris Griffin and Henry Smith MP

Kris Griffin and Henry Smith MP

My story…the latest chapter

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I get my results via email now and I emailed Mark, my consultant, on Monday, quite trepidatiously. He wrote, on Tuesday, with some rather brilliant news.

Undetectable. For the first time in 9.5 years.

No evidence of a BCR-ABL1 gene fusion by RQ-PCR at a sensitivity of 0.00001, consistent with molecularly undetectable CML.

Just to give people some reassurance of how much our numbers can bounce around, take a look at mine since 2012. I’ve no doubt it’ll register next time but for anyone mid-blip, take heart from this.

May 2012 0.03%
Feb 2013 0.007%
Aug 2013 0.04%
Feb 2014 0.03%
July 2014 0.008%
June 2015 0.008%
Dec 2015 0.03%
June 2016 <0.00001%

Thanks to everyone for their support; thanks to dasatinib!

In the meantime, yay.

Kris

 

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It’s a cancer lottery!

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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:

Sign this petition – https://www.change.org/p/david-cameron-mp-stop-unequal-access-to-cancer-treatment
and
Join the Thunderclap –  https://www.thunderclap.it/projects/42710-unfair-access-to-treatment?locale=en

No patient should be part of a #CancerLottery.

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.

Kris Griffin

Self-monitoring of CML Gene Fusion

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That’s a pretty heavy blog title, it’s the shortened version! Just wait until you open up the image below. Don’t worry I haven’t gone all ‘sciencey’ on you; I just want to share the amazing progress that Oxford Nanopore are making with the MinIOn and VolTRAX.

I’ve written about this before, quite a lot as it happens. I’m not obsessed yet but i do find the development of a piece of hardware that measure our DNA at home pretty incredible. This information shows that Oxford Nanopore really believe that this could be a reality and I applaud their vision.

People are starting to sit up and notice, I’ve had quite a few emails from clinicians and pharmacists around the world who are showing interest. The interest comes with slight reservation, this is disruptive technology and a huge step away from the safety net that we are all accustomed to.

Safety, that’s the key word isn’t it! As long as it’s safe; I agree, of course. But in the process I hope we’re going to break and bend a few rules, make the process feel a little uncomfortable. Find a better end result. That’s what disruptive technology is all about.

Think about the current process. We visit the hospital, wait, have blood taken. Come back a few weeks later, months in some cases, wait, see a consultant to be told that all is well (hopefully) and start the process again a few months later. It’s an uneconomical process on many levels. For many, who are several years into remission, it’s the constant reminder that they are sick.

It’s not a process that will work for everyone and it won’t work all of the time, but if we make the device safe to use it becomes a management tool for a chronic condition.

Whilst we’re getting our head around personalised treatment, we also need to manage patient expectations and the psychological impact of diagnosis and a lifetime of treatment. It isn’t a conversation that is happening enough and the NHS doesn’t have the funds to even consider it.

In this new world of taking tablets to treat cancer, the biggest cause of drug failure is compliance, people not taking their drugs. Would this new process, where the patient starts to take responsibility for the management of their disease, in a similar way that diabetics do, help or hinder compliance?

If the current system isn’t working, should we be even more disruptive when looking at compliance? When you ask why someone isn’t taking a tablet, it starts to become a very deep and psychological process; it’s personal. In order to save more lives we have to ask if hardware, software or a human touch is needed to solve the problem. The treatment is personal therefore the solution to any problems have to be personal too.

When I think of MinION or VolTRAX I can think of 20 different ways it could revolutionise treatment and diagnosis for CML: domestically and globally. That’s why I’m passionate about it and it’s why I don’t accept excuses and reasons not to do it.

If we’re fully committed to patient power, and that means accessing the right drugs as well as the right technology, we’re going to have to fight for it. Patient power means something might not fit into the already established status quo, there’s the fight.

It’s a fight worth having because it’s about us…

Kris

 

CML v1Z

A DNA Sequencer in Every Pocket

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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!

Thanks, Kris

Sourcewww.theatlantic.com/science/archive/2016/04/this-technology-will-allow-anyone-to-sequence-dna-anywhere/479625

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.”

Bloodwise Video – Kris Griffin (me)

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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

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