Leukaemia Care: I wasn’t born yesterday

Leukaemia Care has published this outstanding report, it’s well worth a read. As a trustee of Leukaemia Care and a CML patient, I’m incredibly proud of the hard work that has gone into publishing this. Thank you. Kris
What’s the problem?
Research from sources such as Macmillan and Public Health England has shown that cancer survival worsens with increasing age. Older patients (those aged 65 and over) make up just under two-thirds of all leukaemia cases (64%). However, this group accounts for 81% of all leukaemia related deaths. The new report ‘Leukaemia: I wasn’t born yesterday’ looks at the challenges faced by older patients and makes recommendations for improvements.

What this means for patients
As part of our report, we undertook a survey of over 1,300 leukaemia patients, to uncover the inequalities that are impacting on cancer survival and patient experience.

Based on what you told us, we have made the following recommendations:
1. Improved awareness of the signs and symptoms of leukaemia, amongst the public and healthcare professionals, including the link between leukaemia and age.
2. Access to a clinical nurse specialist from diagnosis onwards for all patients.
3. Tailored information and support for patients, based on their individual need, not age. This should include guidance on finding accurate information online.
4. Equal access to clinical trials for patients of all ages, to ensure that robust evidence is available on the most appropriate treatment

What can you do to help?
1. Download a copy of the report (PDF)
2. Share the report on social media to help spread the word
3. If you’re aged 65 and over and have been affected by leukaemia, get in touch with us to share your story by emailing advocacy@leukaemiacare.org.uk or calling 01905 755977
4. Keep up to date with our campaigns by signing up to receive email communications from LC.

(Another) open letter to Dr Fielden: generic imatinib

I don’t take any pleasure in having to follow-up letters that haven’t been replied to, especially letters about something so important. I also dislike having to copy senior people in to force a reply out of someone, it feels childish and wastes time.

But, I’m left with no other option. The letter speaks for itself and I’ve linked PDFs to the two letters that have gone unanswered. I hope that this provokes a dialogue that reassures patients about the generic process. Thanks, Kris

 

Dr Jonathan Fielden
Director of Specialised Commissioning – NHS England
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17^th March 2017

Dear Dr Fielden,

RE: Imatinib – your reference JF 16-1201.1

Sorry to have to write again but it has been a month since I asked for a swift response to my letter dated 16^th February 2017. I should also note that the reason I sent the letter in February is because I didn’t receive a reply to the letter dated 21^st December 2016.

I am concerned by your lack of communication and so are the CML patients that I represent, numbering around 2,000. I have copied the Secretary of State for Health, the Chief Executive of NHS England and my local MP who I hope will encourage you into dialogue with me. I have attached my previous communication and if need be my local MP, Mark Garnier, will vouch for my credibility, he is aware of my advocacy and has been incredibly supportive over the years.

At a time when you are expecting blood cancer patients to make significant changes to their treatment, I am appalled by the lack of communication and care that has been shown. I hope that we can kick-start this relationship and give CML patients some reassurances that their questions and concerns are being taken seriously and explored. Given the amount of money that the switch to generics will save the NHS, it is surely the very least that can be done.

With stretched budgets, patient advocates and charities are under increasing pressure to fill gaps. I am proud to represent my fellow patients and I will not stand by and be done unto and I will not go away. We are a ground-breaking bunch of cancer survivors and I expect to be treated with the same amount of dignity and respect by NHS England that we are shown at all other touchpoints within the NHS.

I’m sure you appreciate how important it is for patients to have faith in the system, I look forward to answers in full for all my questions including this addition to my previous letter.

5. Some patients are reporting that consultants aren’t fully briefed on the switch. What measures have been put in place to ensure information has been disseminated and how is the data from new side-effects being monitored and centrally collated? Some patients are reporting new and different side-effects after switching.

The concerns I had in my previous letter still stand; the process that brought generic imatinib to market is flawed and this is now being realised. I hope that you can provide the reassurances that are needed.

Yours sincerely,

Kris Griffin (Mr)
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CC: Secretary of State for Health, The Right Honourable Jeremy Hunt MP
CC: Chief Executive of NHS England, Simon Stevens
CC: MP for Wyre Forest, Mark Garnier
CC: CML-UK Facebook Group
CC: CML-Worldwide Facebook Group
CC: Access CML Drugs blog

 

Letter to Dr Fielden dated 21st December 2016 – PDF
Letter to Dr Fielden dated 16th February 2017 – PDF

 

Meeting Colleen Fletcher MP

Meeting members of the newly formed All Party Parliamentary Group (APPG) on blood cancer is a little like collecting Pokemon. Stick with me. You see, you have to be patient but when you meet them it’s always a deeply fulfilling experience; I’ve yet to find a Zubat (an ultimately useless Pokemon).

The APPG on blood cancer was formed last year. 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. Bloodwise will provide the secretariat to the group.

I’ve been fortunate to meet three of the founding officers in the past: Jim Shannon, DUP MP for Strangford, Henry Smith, Conservative MP for Crawley and Jess Phillips, Labour MP for Birmingham, Yardley. Today I met the final member of the founding group, Colleen Fletcher, the Labour MP for Coventry North East.

The founders that I’ve already met have all been touched, in some way, by blood cancer. They are all driven, passionate and keen to make a difference to the lives of blood cancer patients. Colleen Fletcher is no different and her experiences are incredibly raw. Her husband faced a gruelling battle with Acute Myeloid Leukaemia in 2014 which resulted in a stem cell transplant; he is now free of leukaemia.

I was struck by her steely determination, her blunt honesty and her deep knowledge of blood cancer issues. We discussed many things including gardening therapy which she swears helped her husband get through his ordeal, the importance of early diagnosis, importance too of after-care, the inequality of cancer drugs including the issues with getting ponatinib to patients and the advent of patient power.

I’ve been mightily impressed by all four members of the group, Colleen is exceptional. She’s personable and has a voice that oozes confidence and strength; she’s a huge asset to patients and I trust her, absolutely, to represent us fairly and with passion. The group is a perfect storm and the members compliment each other perfectly. It’s good to be taken seriously and I believe that this APPG is a huge advance for blood cancer patients. I applaud all of those involved and offer my support in whatever action they take.

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

Kris

Kris Griffin with Colleen Fletcher MP

MPs take action on blood cancers

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

It’s a cancer lottery!

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

A DNA Sequencer in Every Pocket

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

Source: www.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)

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

Please sign and share this important petition

I’m not a huge fan of petitions, they are far too easy to ignore but this one is just 1,707 short of the target of 10,000 signatures. It’s simply too close to the target for us not to go after it.

I’ve been writing about my friend Khalid Younis on this blog for some time now. Like me, Khalid is a leukaemia patient as well as a father of four. He 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.”

As well as this petition going off to NHS England if we achieved the 10,000 signatures, it would also mean that any correspondence we have with ministers and government departments we could reference it – it’s quite a powerful statement and makes the case to get access to these drugs a little strong.

Please sign. https://www.change.org/p/nhs-nice-cancer-dad-denied-tratment#petition-letter. Please share.

Thank you. Kris

Trial: Discontinuation of dasatinib

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.

Thanks, Kris

Taken from The Lancet haematology

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).

Khalid Younis – A Letter From Number 10

In October I wrote this letter to David Cameron, our Prime Minister.

Dear Prime Minister,

The photo below is of me with my new friend, his name is Khalid Younis. We both have a rare form of leukaemia called Chronic Myeloid Leukaemia (CML). Treatment for CML was revolutionised in 2001 when Time magazine hailed a drug called imatinib a magic bullet against cancer. Now, 14 years later, my friend cannot access a new, potentially life-saving drug called ponatinib because it hasn’t been appraised by NICE.

Khalid Younis and Kris Griffin

I don’t understand why the cancer drug fund process was closed alongside the appraisal process, we find ourselves falling through an administrative gap. Khalid’s situation has attracted nearly 8,000 signatures on a petition and the story has been featured in the Daily Mail, Daily Mirror and the local Birmingham newspapers. We’ve contacted Khalid’s MP, Roger Godsiff and my MP, Mark Garnier. Mark knows my work and has always been really supportive.

Whilst I realise you have many responsibilities and must receive many letters like this; if you have time to meet or discuss this issue and help us I would be extremely grateful.

Ponatinib offers the last real hope Khalid has, not being able to access it in England is devastating.

Yours sincerely,

Kris Griffin (Mr)

Last week I received this reply:

Of course I’m disappointed, I’m not sure if I ever thought he’d agree to a meeting and fix the problem. My issue with this letter is that the Department of Health is part of the problem. They’ve allowed this issue to manifest and within the space of two days (last week) I’ve managed to extract three different dates when they expect the appraisal process to be ready. Not ready for use…oh no..ready for it to be reviewed. In the meantime, we don’t have an appraisal process and by that point we won’t have a cancer drugs fund. I don’t want to write a ‘told you so’ letter to our PM.

So, I’ll be writing to Mr Cameron again, perhaps I’ll also include the 8,000 signatures on this petition and ask him what he thinks the Department of Health will do; because from where I’m sitting they are making the situation worse.

Kris Griffin – Access CML Drugs