Letter to Simon Stevens – Chief Exec of NHS England

A group of charities and advocates (including me) have come together to put a letter in front of Simon Stevens, the chief executive of NHS England to ask him to consider the situation for two CML drugs: bosutinib and posatinib.

The letter sets out the case for the retention of bosutinib on the list of Cancer Drugs Fund (CDF) drugs for CML patients in England, and also argues for ponatinib to be made available, via the CDF, for any patient in England that falls within its licensed use providing their clinician thinks it appropriate and the patient agrees to treatment. This would allow CML patients resident in England to enjoy the same level of access CML patients in Wales and Scotland currently enjoy.

There was a Written Parliamentary Question answered by a Department of Health Minister on Monday that confirmed rumours that have been circulating for some weeks that there will be no new applications for drugs to enter the national CDF in the future. This would effectively make ponatinib unavailable in England to all clinically qualifying patients who do not have the T315i mutation.

NHS England will of course say a clinician can make an exceptional needs application for ponatinib treatment for an individual patient but the success rate to date of this type of application has been negligible.

Finally, it’s important to stress that all patients in England currently being treated by bosutinib or ponatinib via a successful application to the CDF will continue to be able to be treated with either drug until they or their clinician decides otherwise.

I’ve posted the content of the letter below and have also included a download to the PDF. It has also been sent to the Secretary of State for Health. Many thanks to David Ryner at CML Support for spearheading this action.

I’ll keep you posted with any progress. Thanks, Kris

Dear Mr Stevens,

We are writing to you regarding the recent announcements relating to the Cancer Drugs Fund (CDF) and the specific decisions that have been taken on treatments for chronic myeloid leukaemia (CML).

As patient groups representing the concerns of patients with CML, we are particularly alarmed by both the inclusion of CML treatments in the next review of the CDF for delisting at the end of this month, and by the suggestion that there may not be any further meetings of the GDF panel to consider new treatments or indications for the remainder of the 2015/16 financial year.

In particular, I would like to draw your attention to the situation currently facing two medicines which treat patients with more advanced CML, who therefore face severely limited treatment options. Bosutinib is scheduled for review at the next meeting of the CDF panel at the end of this month. Ponatinib, a drug which has never been appraised by NICE due to its small patient population, is only available through the GDF for patients with the T315i mutation, rather than in its full licensed indi. cation. Ponatinib was due to be assessed by the CDF panel for its full licence in June, before the cancellation of the last scheduled meeting.

This situation for those patients needing access to ponatinib is particularly acute; with NHS England’s Commissioning Intentions for 2015/16 committing to producing algorithms for all chemotherapy within the year, ponatinib now faces the prospect of being effectively excluded from the CML algorithm entirely, with the exception of the T35i mutation.

When the threat to bosutinib is factored in and with the exception of the minuscule number exhibiting the T315i mutation, patients in England now face a lack of access to two of the five drugs that are currently available to them. The clinical effectiveness of these drugs in being able to secure optimal responses at speed and scale relative to the current entry level CML inhibitor, imatinib, now over a decade old, is well established.

The Government’s Accelerated Access Review (AAR) demonstrates a welcome recognition that current evaluation processes require revision to ensure they are fit for purpose in assessing the new generation of innovative products, including targeted therapies for CML. We recognise, too, that the CDF needs to adapt its processes to remain in step with the wider Government agenda.

It is therefore bewildering, contradictory and illogical for NHS England’s real time activity to be moving in the opposite direction of travel in reversing, rather than accelerating, access to targeted therapies for CML. This is made even more remarkable given the fact that, relative to other CDF list treatments, the performance of this class of drugs has been considered outstanding when judged against standard measures of survival. As a result, the overwhelming majority of patients are now able to secure decades of benefit from these home-based oral therapies, with their lives returning to near normal (and patients enjoying near-normal life expectancy) following treatment.

Such marked improvements in CML patient outcomes have been achieved by the steady increase in targeted therapies. We believe that to withdraw the opportunity from patients who would benefit from targeted CML therapies such as ponatinib and bosutinib is both discriminatory and perverse and we would strongly urge you to reconsider this decision by NHS England.

cc. Rt Hon Jeremy Hunt MP

Yours sincerely,

David Ryner, Chair, Chronic Myeloid Leukaemia Support Group
Chris West, Head of Media and Public Affairs, Leukaemia & Lymphoma Research
Tony Gavin, Director of Campaigns & Advocacy, Leukaemia Care
Nigel Deekes, CML UK
Kris Griffin, UK CML blogger

Simon Stevens Letter PDF

Jeremy Hunt Letter PDF

CML HORIZONS 2014 DAY 1

It was a long journey and an early morning. Sure, some people have travelled further and probably got up earlier but, sat writing this, I feel the pain. It was good to finally arrive in Serbia for CML Horizons 2014, no thanks to Air France who tried to derail me at every step. 

I was sad to have missed the opening video from Dr. Brian Drucker and the tribute to John Goldman, that pesky journey has much to answer for. I look forward to seeing the video and tribute on the CML Advocates website. So, things kicked off with a trip around the world with advocacy sessions: Latin America, Africa & Middle East, Asia-Pacific, North America and  Europe. This whistle-stop tour featured a key delegate from each region who presented an overview and the main challenges they faced. I was particularly struck, from Greg Stephens’ presentation, by the huge increase in CML deaths in North America. Whilst Greg is working on trying to understand what is causing this disastrous trend, I’d take a bet on it coming down to finance. The same old story. Very disappointing. It’s even more disappointing coming on the back of the excellent Leukaemia & Lymphoma Research, Impact Day, in London where we heard about the fantastic progress being made in the world of blood cancer.

Jan Geissler did his best to redress the balance with a more healthy European outlook but as we move West to East across Europe the challenges become greater. More disparity. All of the regions are working hard to bring a fair distribution of drugs that ultimately save lives. 

To the first medical session of the conference; Dr Neil Shah updated the delegates with the latest available treatments. Whilst we touched upon various forms of treatment including stem cell transplants and interferon-alpha the focus was on TKIs. The long term IRIS trial (7-8 year follow up), which is sadly coming to an end, shows a 93% survival rate considering only CML deaths for patients on Imatinib. Dr Shah felt that Imatinib has outperformed all expectations. We were presented with data that shows nilotinib and dasatinib as superior treatments to imatinib. For example in trails the complete cytogenetic response rate by 12 months on dasatinib is 83%, for imatinib 72%. For major molecular remission rate by 48 months, 76% on nilotinib and 58% on imatinib. This isn’t to say that imatinib isn’t the wonder drug it was first heralded as, without it this stunning progress could never have been made; and for those patients it suits, it works incredibly well. 

Next up, a fascinating update on therapy recommendations from Prof Giuseppe Saglio from the University of Turin, who really drilled the data down for us and showed a very logical progression of drugs and optimum responses. It is very clear that new drugs have given our clinicians excellent ammunition in the treatment of CML.

Finally, Dr Qian Jiang from the Peking University People’s Hospital who spoke about the role of transplant in CML. Whilst it is still a very important part of treating CML, the number of operations has steeply declined since the advent of TKIs. It is however, fascinating to see continuous development and improvement in this key area.

After a short question and answer session the day broke and we all raced back to our rooms to prepare for dinner. It was wonderful to catch up with old friends and see many new faces. Most conversations started, “has it really been a year?”. 

The CML community is lucky to have such a vibrant, resilient and informed group of people. With hard work and good bonds the group have take an orphan disease and put it firmly on the blood cancer map. Better than that, they have shown the way. The group is keen to talk about ‘advocacy’ and ‘blood cancer’ rather than isolate itself by being singular. This is the key, the group understands that the progress being made here and now will affect cancers of all types for generations to come.

Today has really set the pace for a fantastic conference. Stay tuned…same CML time….same CML channel.

Leukaemia & Lymphoma Research Impact Day 2014

It might seem crazy what I’m about to say
Sunshine she’s here, you can take a break
I’m a hot air balloon that could go to space
With the air, like I don’t care baby by the way

– Happy by Pharrell Williams

There was a definite happy vibe at Leukaemia & Lymphoma Research’s Impact Day yesterday at the Tower Hotel in London. Impact Day is the charity’s annual conference, with a difference. It’s clearly deigned to have an impact on the audience. It did just that! The delegates made up from fundraisers, patients, carers, researchers, Doctors, clinicians, nurses, family members and staff from the charity, were given a blast of progress. What progress! I lost count of the number of times the word ‘cure’ was used. There is a genuine belief that they are the cusp of greatness and whilst looking back at the roots of the charity it truly felt we were standing on the shoulders of giants.

The countless lost to blood cancer over the years has not been in vain, not a bucket rattle wasted and not a clinical trail regretted. We heard about the progress in Childhood Leukaemia (Professor Christine Harrison), Acute Myeloid Leukaemia (Professor Paresh Vyas and Advanced Nurse Practitioner Kirsty Crozier) and Chronic Lymphocytic Leukaemia and Lymphoma (Professor Chris Pepper). Matt Kaizer, Chris West and David Henderson all spoke, with great conviction, about the role of the charity in research, policy and insight respectively. It’s great to see Leukaemia & Lymphoma Research taking policy and insight so seriously, both done well will save lives, albeit in a different way to research; equally important though.

The audience, which was considerably larger than last year, hung on every statistic and anecdote. There were tears and there was admiration. Particular memories for me included the progress in childhood leukaemia where survival rates are now over 90% and the passion in which Kirsty Crozier spoke about her ‘calling’ as a Nurse. It was good to hear Professor Pyas say that the Cancer Drugs Fund has been, “transformational” and Professor Pepper suggest that the best way to make drugs affordable is to create competition in the marketplace. It certainly gives me renewed vigour in hearing that.

A chap called Kris Griffin (!) spoke about patient support and the new online patient services being offered by the charity and Dr Peter Campbell who is Head of Cancer Genetics and Genomics at the Wellcome Sanger Institute gave the audience an insight into individually tailored treatment plans. The progress is more than a little mind-blowing, costs are reducing as is the time taken to sequence; the impact on patient treatment immeasurable.

The day was hosted impeccably by Professor Chris Bunce, whose must surely be a shoo-in to replace Brucie on Strictly, such is his calm, smiling, brilliant demeanour. The day was rounded up perfectly with a closing address by Chief Executive Cathy Gilman who summed up with ease and grace. The hope. The joy. The memory of those that we have lost. The joy that we are step closer to a cure.

“Life is a gift. Use it wisely and live it fiercely.”
– Cathy Gilman

Each loss hurts more now. That we are so close means the pressure is truly on. I can hear buckets being rattled harder, more cakes being baked, running further, cycling harder. To hope. True impact. With heartfelt thanks to everyone, everyday. More happy days.

And all this from a charity who started, quite humbly, in 1960. A seemingly impossible task. This is just the start. Beware cancer, we’re coming for you!

Kris Griffin (middle) with the patient services team and CEO Cathy Gilman from Leukaemia & Lymphoma Research

Here we go again…

Didn’t crazy eighties hair rockers Europe write a song like that?

Sorry about my absence, no excuses really – simply a case of balancing all of the things I’m involved in and sadly my gorgeous little blog got bumped down the list. It doesn’t mean I don’t love you. I’m good, had a bit of blip with my blood but all OK now. I’ve got some cool things going on so the blog will spark back into life now. Hurrah!

Firstly I’ll be at Impact Day for Leukaemia & Lymphoma Research this Saturday doing a speaky bit about my journey and their online patient services which are fantastic. Find out more here: www.leukaemialymphomaresearch.org.uk/event/special-events/impact-day-2014 If you are going please drop me a note or tweet me – I’d love to catch up with people.

The following weekend I’m off to Serbia, as a delegate, for CML Horizons 2014. I’m a 3 year veteran of this remarkable event which regularly attracts over 140 participants from almost 60 countries. It’s 3 long days with even longer evenings but it provides a great opportunity to network and get up-to-speed on the latest developments in the CML world. I’m being sponsored to go by Leukaemia & Lymphoma Research (LLR) along with their patient engagement manager. I’m delighted LLR are attending, I’ll be sharing my daily blog entries on their website.

Finally, I don’t do things by half, I’m pursuing some issues with the finance industry about life insurance cover for CML patients. Whilst traditional cancer patient are able to get cover after being in remission for a number of years, it is incredibly difficult to get cover if you have had blood cancer. I think this is partly down to the sector not understanding the new treatments available to us, I’m hoping to work this out. I’ll keep you posted.

I trust you are keeping well? Thanks for sticking with the blog. I’ll post at the weekend from Impact Day.

Kris

Feel good factor and farewells at the Royal Albert Hall from just £10

The Calendar Girls have raised £3 million for Leukaemia & Lymphoma Research, inspired by the death of a much-loved husband, father and friend John Baker.

Their story has inspired one of the UKs most successful films, the most successful touring play and is likely to beat the world record for amateur dramatic performances too.

This is your only chance to hear the true story of the Calendar Girls, hosted by Alan Titchmarsh with performances and special messages from a host of actors from the film and play and some of the biggest names in the London West End at the Royal Albert Hall on Sunday October 7 at 6pm.

These already include Ricardo Afonso, John Alderton ,Edward Baruwa, Lynda Bellingham, Cantabile – The London Quartet, Janie Dee , DMJ, Tiffany Graves ,Jan Harvey ,Patricia Hodge, Sue Holderness, Celia Imrie, Lesley Joseph, Debbie Kurup, Peter Skellern, Richard Stilgoe, Stephen Tompkinson and Tabitha Webb. Beth Neilsen Chapman and Patrick Doyle will perform their iconic “I Find Your Love” from the film soundtrack and Tim Firth will perform a specially written tribute with Willy Russell – there will be many more surprises on the night!

This unique show, devised and directed by Hugh Wooldridge of The Night of 1,000 Voices will also feature popular classics and songs from favourite shows such as Rent and Carousel, ending in true WI and Calendar Girls style with a rousing chorus of Jerusalem- you’ll need tissues at the ready!

There is a 50% discount for friends of Leukaemia & Lymphoma Research, tickets are £10 -£27.50 and are available directly from the Royal Albert Hall Box Office: 02075898212 or online at www.royalalberthall.com quoting code 11206.