Ponatinib (Iclusig) – GREAT NEWS!!!

I love news like this, especially when it’s been four-years in the making.

Iclusig (ponatinib) for the treatment of Chronic Myeloid Leukaemia (CML) in adult patients with chronic phase, accelerated phase, or blast phase CML who are resistant to dasatinib or nilotinib; who are intolerant to dasatinib or nilotinib and for whom subsequent treatment with imatinib is not clinically appropriate; or who have the T315I mutation.

For CML patient in England, this means we now have another safety net that is readily available for consultants to prescribe immediately. This is going to make a big difference to treatment options and the mental well-being of many patients.

Just a quick shout to all of the people who work for and are associated with Incyte (formally ARIAD) who’ve never given up on this and have worked so hard to get it to us. Congratulations and thank you.

NICE has also recommended ponatinib for treating Philadelphia-chromosome-positive acute lymphoblastic leukaemia in adults. Hit the link for more info on this: www.leukaemiacare.org.uk/news/NICE-recommends-ponatinib

The full press release follows.

Kris

 

NICE Issues Positive Final Recommendation for Iclusig (ponatinib) for Chronic Myeloid Leukaemia (CML) in England

CML patients across the UK who are resistant or intolerant to second generation tyrosine kinase inhibitor (TKI) therapies will now have equal access to Iclusig

LONDON, UK [28 April 2017] – Incyte Corporation (Nasdaq:INCY) announces that the National Institute for Health and Care Excellence (NICE) Technology Appraisal Committee (TAC) has published a positive Final Appraisal Determination (FAD) recommending Iclusig^â (ponatinib) for the treatment of Chronic Myeloid Leukaemia (CML) in adult patients with chronic phase, accelerated phase, or blast phase CML who are resistant to dasatinib or nilotinib; who are intolerant to dasatinib or nilotinib and for whom subsequent treatment with imatinib is not clinically appropriate; or who have the T315I mutation.[i]

The positive FAD from NICE brings CML patients in England in line with those in Wales and Scotland who have had full-access to Iclusig, according to its license,[ii]^,[iii] since 2015; providing patients with CML across the UK who have failed other treatments equal access to an additional and important option.

“Today’s decision is important for patients with CML who have failed other treatments, as well as for physicians in England, who will now have access to the clinical benefits of Iclusig,” commented Mark Tanner, General Manager of Incyte Bioscience UK. “Together with the CML community, we have worked very hard over the last four years to encourage NICE to reconsider their original evaluation and are delighted that NICE has acknowledged the unmet need and the value that Iclusig brings.”

CML is a rare blood cancer with around 700 new cases each year in the UK.[iv]  CML affects economically active people, with around 50 percent of UK cases in people aged under 65 years.^iv Many patients with a new diagnosis of CML have a prolonged clinical benefit from targeted therapy with tyrosine kinase inhibitors (TKIs). However, there has been a high unmet need and poor prognosis for patients whose advanced disease is resistant and intolerant to other therapies.[v] Once available treatment options are exhausted, the prognosis can be poor.^v  Despite advances in treatment, there remains a need for additional effective therapies for the management of CML.[vi] Iclusig fulfils an important need in the treatment pathway for CML patients and provides clinicians and patients with a full suite of treatment options for CML.

Professor Jane Apperley, Department of Haematology, Imperial College School of Medicine, Hammersmith Hospital, London said, “This is an exciting and long-awaited outcome, which allows physicians to manage patients in a logical and clinical-evidence based manner with the goals of improving long-term survival and providing a good quality of life.”

Iclusig was approved by the European Commission[vii] in 2013 as an orphan drug for the treatment of adults with chronic phase, accelerated phase, or blast phase CML who are resistant to dasatinib or nilotinib; who are intolerant to dasatinib or nilotinib and for whom subsequent treatment with imatinib is not clinically appropriate. In Ph+ALL (Philadelphia chromosome‒positive Acute Lymphoblastic Leukaemia) patients, Iclusig is licensed for adult patients with Ph+ ALL who are resistant to dasatinib; who are intolerant to dasatinib and for whom subsequent treatment with imatinib is not clinically appropriate. Iclusig is also licensed for people with CML and PH+ALL who have T315I mutation.[viii]

About CML and Ph+ ALL

CML is a cancer of the white blood cells that is diagnosed in approximately 7,000 patients each year in Europe.[ix] CML is characterized by an excessive and unregulated production of white blood cells by the bone marrow due to a genetic abnormality that produces the BCR-ABL protein. After a chronic phase of production of too many white blood cells, CML typically evolves to the more aggressive phases referred to as accelerated phase and blast crisis. Ph+ ALL is a subtype of acute lymphoblastic leukaemia that carries the Ph+ chromosome that produces BCR-ABL. It has a more aggressive course than CML and is often treated with a combination of chemotherapy and tyrosine kinase inhibitors. The BCR-ABL protein is expressed in both of these diseases.

About Iclusig^® (ponatinib) tablets

Iclusig targets not only native BCR-ABL but also its isoforms that carry mutations that confer resistance to treatment, including the T315I mutation, which has been associated with resistance to other approved TKIs.

In the EU, Iclusig is approved for the treatment of adult patients with chronic phase, accelerated phase or blast phase chronic myeloid leukemia (CML) who are resistant to dasatinib or nilotinib; who are intolerant to dasatinib or nilotinib and for whom subsequent treatment with imatinib is not clinically appropriate; or who have the T315I mutation, or the treatment of adult patients with Philadelphia-chromosome positive acute lymphoblastic leukemia (Ph+ ALL) who are resistant to dasatinib; who are intolerant to dasatinib and for whom subsequent treatment with imatinib is not clinically appropriate; or who have the T315I mutation.

Incyte has an exclusive license from ARIAD Pharmaceuticals, Inc, a wholly owned subsidiary of Takeda Pharmaceutical Company Limited, to develop and commercialize Iclusig in the European Union and 28 other countries, including Switzerland, Norway, Turkey, Israel and Russia.

About Incyte

Incyte Corporation is a U.S.-based biopharmaceutical company focused on the discovery, development and commercialization of proprietary therapeutics. For additional information on Incyte, please visit the Company’s website at www.incyte.com.

Follow @Incyte on Twitter at https://twitter.com/Incyte.

[i] NICE. 2017. Final Appraisal Determination: Ponatinib for treating chronic myeloid leukaemia and acute lymphoblastic leukaemia. Available at https://www.nice.org.uk/guidance/gid-ta10060/documents/final-appraisal-determination-document Last accessed 28 April 2017

[ii] All Wales Medicines Strategy Group. Ponatinib (Iclusig). Appraisals. Available at: http://www.awmsg.org/awmsgonline/app/appraisalinfo/1163. Last accessed 24 March 2017

[iii] Scottish Medicines Consortium. SMC Advice. Ponatinib (Iclusig). Available at: http://www.scottishmedicines.org.uk/SMC_Advice/Advice/1032_15_ponatinib_Iclusig/ponatinib_Iclusig. Last accessed April 2017.

[iv] CRUK. Chronic myeloid leukaemia (CML) incidence statistics. Available at: http://www.cancerresearchuk.org/cancer-info/cancerstats/types/leukaemia-cml/incidence/. Last accessed April 2017.

[v] Cortes JE, KimD-W, Pinilla-Ibarz J, et al. A Phase 2 Trial of Ponatinib in Philadelphia Chromosome–Positive Leukemias. N Engl J Med 2013;369: 1783-1796. Available at: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1306494.

[vi] Woessner DW, Lim CS, Deininger MW. Development of an Effective Therapy for CML. Cancer J 2011;17(6):doi:10.1097/PPO.0b013e318237e5b7. Available at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3251313/pdf/nihms-332259.pdf. Last accessed April 2017.

[vii] EMA. Iclusig EPAR summary for the public.  Available at: http://www.ema.europa.eu/ema/index.jsp?curl=pages/medicines/human/medicines/002695/human_med_001656.jsp&mid=WC0b01ac058001d124. Last accessed April 2017.

[viii] Iclusig Summary of Product Characteristics. Available at: http://www.medicines.org.uk/emc/medicine/28145. Last accessed April 2017.

[ix] Rohrbacher M, Hasford J. Epidemiology of chronic myeloid leukaemia (CML). Best Pract Res Clin Haematol. 2009 Sep;22(3):295-302. Based on current estimate of population of Europe (738,199,000 in 2010).

 

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

MPs to debate the availability of cancer drugs in Parliament

I am pleased to announce that next Tuesday, 20th October, MPs will take part in a Westminster Hall Debate on the availability of cancer drugs. This has been sought by DUP MP Jim Shannon, a big advocate of cancer patients, following his attendance at a dinner to discuss access to medicines for blood and rarer cancers earlier in the year. The debate will give MPs the opportunity to discuss the significant problems many cancer patients in England are currently facing in terms of gaining access to the medicines they need.

You will have read about the fight I have taken up to help 43 year old Birmingham father of four, Khalid Younis, gain access to ponatinib for his resistant Chronic Myeloid Leukaemia (CML), including the meeting we had last week with his local MP, Roger Godsiff. I have alerted Roger to the fact that this debate is happening and asked if he can raise Khalid’s case with the Minister to see if we can progress the situation further with the Government and NHS England. In addition, an Access CML Drugs briefing has gone out to a number of MPs I’ve met before, or who have an interest in CML, stem cell transplantation or the ending of the Cancer Drugs Fund. The briefing highlights our key issues and the inequity of access English patients currently face compared to those in Scotland and Wales. You can download the briefing below.

Whilst the debate won’t focus solely on CML or blood cancer, I hope Khalid’s story will form part of the discussion and be used to demonstrate the problems which exist with the current evaluation methods used for cancer medicines in England, particularly with the Cancer Drugs Fund (CDF) refusing to appraise any new medicines between now and when the Fund ends in March 2016. I hope the issue of how the National Institute for Health and Care Excellence (NICE) and the CDF work (or don’t!) together will also be discussed; any future system of evaluation for cancer medicines needs to be able to work for cancers with small patient populations and previous drugs have, sadly, fallen down the gap between NICE and the CDF.

I would encourage everyone to contact their local MP and ask them to attend and contribute to the debate. You can find out who your local MP is here. The more MPs that attend, the greater the level of awareness there will be amongst parliamentarians of the issues we face.

I will post again following the debate.

Kris Griffin – founder of Access CML Drugs

ACCESS CML DRUGS – WESTMINSTER HALL DEBATE – BRIEFING

Khalid Younis – an update

You’ll recall that we’ve been working with Khalid Younis, the 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. The new ‘wonder’ drug is the only treatment left for the 43-year-old who is battling Chronic Myleoid Leukaemia (CML), of which there are 700 new cases a year in the UK. His body has become resistant to all other medicines and he is not eligible for a stem cell transplant. Mr Younis, a former carpet fitter, is being treated at Birmingham’s Queen Elizabeth Hospital and this drug is his last chance; he’s been told that his case is “not exceptional.” You can find my original posts HERE and HERE.

Whilst the story received exceptional media coverage, things may have appeared to have quietened down over the last two weeks. They haven’t.

Firstly, the petition set up by Debbie Williams has attracted 7,507 supports, the target is 10,000. If you haven’t signed the petition, please sign it now: www.change.org/p/nhs-nice-cancer-dad-denied-tratment

Kate from The Pamela Northcott Fund is putting together an appeal against the decision. Kate is an incredible person who has an amazing track record of supporting cancer patients who have been denied access to new drug therapies that have yet to be approved by NICE or refused by NICE. Kate offers this as a completely free service to patients, her reward is seeing a cancer patient on the right treatment. You can find more out about the Fund by visiting the website www.pamelanorthcottfund.org.uk.

Roger Godsiff MP, Khalid Younis, Kris Griffin

Khalid and I have been in touch with Khalid’s MP, Roger Godsiff – www.rogergodsiffmp.co.uk – who has written to NHS England, NICE and the Secretary of State for Health about the case. Roger has been incredibly supportive. We met up with him last week at his home and he listened with interest to Khalid’s story and offered advice on next steps.

If you are a patient, based in England and wish to take action on this matter, please get in touch with me through my contact form. I’ll ask you to write to your MP as a CML patient and request they too write to the Secretary of State to Health to highlight Khalid’s case. I’ll help you out with the wording of the letter.

Finally, if all else fails we are considering a fund-raising campaign to pay for Khalid’s drugs. We hope that it doesn’t come to that.

All things considered, Khalid is in incredibly good spirits. He very much appreciates the efforts that everyone is making and wishes to send thanks out to you all.

We’ll keep fighting. Thanks, Kris

Khalid Younis and Kris Griffin

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)

Ponatinib Access: Denied

I recently sent in a Freedom of Information request to NHS England to find out how many patients in England had requested ponatinib for chronic myeloid leukaemia and who would not already be entitled to it on the NHS. Currently only patients with the T315l mutation are able to have the drug prescribed by their doctor, with other patients who want the drug having to get a clinician to make a special request (an Individual Funding Request, or IFR) to the Cancer Drugs Fund, which NHS England runs.

I was shocked by the response to my query, that of the 14 patients who requested ponatinib (from April 2013 to March 2015), just 2 of them were granted access to the drug and the other 12 were denied. It seems short-sighted of NHS England not to allow patients access to a drug which could benefit them when others have stopped working, and when the only other option is often a stem cell transplant.

With such small patient numbers NICE won’t even consider appraising ponatinib, the CDF is supposed to act as a support system for patients to access drugs for rarer cancers, but the system clearly currently isn’t working.

Patients in England are again missing out compared to their counterparts in Wales, where the drug is fully approved for all CML patients.

This excellent graphic clearly shows that in the ponatinib PACE trial, patients benefited from ponatinib after they had failed other TKIs at various stages of disease progression.

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’

Britain Against Cancer 2014

This was the busiest Britain Against Cancer conference to date. The hall was packed and the exhibition heaving with exhibitors and delegates. Had the election brought people out? The chasm that opens next May could realise plenty of opportunities. Such a shame that various stakeholders in the war on cancer don’t realise the same opportunities.

The Cancer Drug Fund was booted around like a wartime Christmas football and plenty of goodies were hung on the tree of ‘what if’, enticing delegates with their sparkly charm; alas like many decorations, hollow inside. The conference was chaired by the suave, authoritative figure of Jon Baron MP, again in his guise as Chair of the All Party Political Group on Cancer (APPGC). If ever there was a politician with an assured career as a TV heavyweight politico, should the election go wrong, this is your man.

Kris Griffin and John Baron MP

After snappy opening remarks where John Baron suggested that Clinical Commissioning Groups (CCGs) would be driven to focus on public health if their cancer survival rates were up in lights, the conference swung into action with Simon Stevens, Chief Executive NHS England. Stevens almost immediately announced plans for 1 year survival rates to be added to CCG delivery dashboard – it was almost like it had been foretold. Cynicism aside, this is a positive development allowing us to compare CCGs and focus on the areas that need the most support.

The rest of Stevens’ delivery was less of a feast and more of an overview with one eye firmly on 2020. He covered childhood obesity and improvements in radiotherapy and diagnosis. He advocated a focus on coming to sensible agreements with pharma, as if we hadn’t been trying to do this for the last 20 years, and promised to set up a new task force with a view to delivering cancer treatment through 2020 and beyond. The ‘task force’ is a political black hole, in the same twilight zone as the independent enquiry, I have no idea what it means, what it does and how much it costs. Sounds good when it’s hauled into a packed conference though!

Onto the Secretary of State for Health, The Right Honorable Jeremy Hunt MP; sleeves rolled up, no notes and striding the stage like a modern-day master of illusion. He told us that we have the best hospitals, doctors and research but we have the lowest survival rates for cancer. He suggested this was a paradox, I’d suggest it is simply bad management. I love our NHS staff to bits but when I had to take my 91-year-old Nan into hospital last week I counted 16 trolleys in a corridor queuing to get into A&E; it took nearly 12 hours to find my Nan a bed on a ward. The smoke and mirrors continued; there would be investment into genome research (where data could be linked to individual records) and a focus on prevention and early diagnosis.  We would build our cancer strategy on four pillars: money, new models of care, innovation and culture (improved accountability and transparency). This makes me wonder what we’ve been building our strategy on for the last 5 years. He sounded like a man who had run out of steam, there was lots of, ‘what we want’ but not much how it’s going to be done, or how it’s going to be paid for. All-in-all a typical pre-election offer with very little substance. A flash of light and a puff of smoke, he was gone. I was quite disappointed he didn’t pull a coin from a child’s ear.

The panel with Professor Julia Verne (Strategic Public Health Lead for the National Cancer Intelligence Network), Professor Nazneen Rahman (Professor of Human Genetics and Head of Division of Genetics & Epidemiology at The Institute of Cancer Research, London and a Consultant Clinical Geneticist and Head of Cancer Genetics at The Royal Marsden), and Geoff Thomas (Former patient and Patron of Cure Leukaemia) was blessed with a single moment of genius. In summing up, the panel were asked to make one wish in the battle against cancer, Geoff suggested that we unshackle our consultants and give them what they need, in order to treat people effectively. Geoff’s moral cause is a simple one but it’s effective and, as patients, it cuts to the heart of what we want and try to do every day. Geoff’s approach is one we can all learn from, don’t listen to the cynics and if you can’t go around them, go through them.

The panel discussed heath literacy, the power of information, alcohol, tobacco, getting systems right and the prevention of the HPV virus with vaccination. Professor Verne suggested that data is everything in understanding cancer survival agenda and that patients should be better informed. There were lots of questions for them on how to reduce inequalities in cancer outcomes and a clear message about the one year survival rates on the CCG delivery dashboard: that it will improve diagnosis and outcomes across the board. Time will tell.

The Shadow Secretary of State for Health, Andy Burnham MP, made the most of the opportunity to talk to the largest conference on cancer in the UK and certainly outshone his ministerial counterpart. He condemned the Coalition of missing targets and stalling the progress on cancer treatment.He promised a new cancer strategy within 6 months of forming a government with a view to being the best in Europe. He wanted to give children a healthier start in life, tackle tobacco related harm and will bring plain tobacco packaging in. He felt that no child should leave education without being able to recognise early signs of cancer and paid tribute to Stephen Sutton and the work of the Teenage Cancer Trust. He pledged to push access to tests to within 1 week by 2020, this would be paid for via a levy on the tobacco industry. He also promised to improve screening for lung, ovarian and bowl cancer and gave a firm commitment to radiotherapy.

Secretary of State for Health, The Right Honorable Jeremy Hunt MP

He pledged to do all he could to understand and fix under-treatment for the elderly, commit to research, improve access to data, speed up clinical trials and provide physical, mental and social support for people living with cancer. He spoke with passion about the right to die at home and said he would do all he could to build a new right in the NHS constitution to ensure patients had the choice. He covered pretty much every base he could, a cynic would say it’s easy to do in opposition, perhaps it’ll be a different story given power and the financial restriction he would be under. Ultimately I trust Andy Burnham. I’ve been lucky enough to speak to him on several occasions, he has always been honest and has always been up-front in his beliefs. he has qualities that I admire in a politician.

What is worrying is his plan for the Cancer Drugs Fund (CDF). He feels it is indefensible to take money from one health-pot to put into another; referring to radiotherapy and surgery being treated as second class treatments. In his defence he told me this 2 years ago and he clearly hasn’t changed his mind. A Labour government would replace the CDF with a Cancer Treatment Fund, this would cover treatment and not just drugs.

There would be a continuation of drugs but a review of NICE (National Institute of Clinical Excellence) and the appraisal process. Ultimately he wants equality across the cancer board.  Labour would use Pharmaceutical Price Regulation Scheme (PPRS) revenues to replace and expand the new Cancer Treatment Fund. Existing funding would continue but there would be less money to fund expensive, new, innovative drugs, drugs that the CML community have relied on for such a long time. The fund would increase from £280m to £330m, there would have to be cuts to drugs to provide more money to other treatments. You can read the full story on this particular announcement at the BBC News website.

It’s a worrying development. My colleague and I debated, at length, whether we were cancer advocates or CML advocates. For the cancer patient this is welcome news and it pleases me. But as someone with CML who campaigns for newly diagnosed patients this is a disaster, it could mean that even less drugs are available in 1 year than there are now. CML treatment is at the forefront of the war on cancer. For generations we wished for a tablet that could cure the patient, now it’s here we make it difficult to obtain. There is much reflection to be had.

John Baron MP on stage

Next up a break-out session that was always going to be contentious: Are new cancer drugs too expensive for routine use on the NHS? Expertly chaired by Alastair McLellan (Editor, Health Service Journal) and featuring Leela Barham (Founder, Leela Barham Economic Consulting), Mike Birtwistle (Founding Partner, Incisive Health), Meindert Boyen (NICE Technical Appraisal Programme Director) and Barbara McLaughlan (Head of External Affairs, Oncology, Novartis). Whilst Barbara McLaughlan suggested that a new system for the Cancer Drugs Fund lacks transparency and fairness, Boyen countered by saying that every NICE decision to approve a drug means ‘denying health’ to other groups of patients. He went as far as saying that NICE would be happy to authorise more expensive cancer drugs if that is what commissioners want. The stand-off between pharma and government was never more evident, thankfully both guests reasoned with dignity and intelligence. Leela and Mike were the cats in the pigeon party.

Whilst Barham said that the Cancer Drugs Fund is driven by politics, it doesn’t offer value for money and distracts from more important issues. She also pointed out that the Government audit of the Cancer Drugs Fund has never been published. Birtwistle felt that the Cancer Drugs Fund was a temporary solution and is approaching ‘breaking point’ and that the first two years of Cancer Drugs Fund were wasted, as there was no development to establish permanent solutions. The panel was incredibly insightful and kudos to whoever put this one together, it’s been a long time since I’ve seen such a productive discussion.

Finally, to end the conference, Sean Duffy, National Clinical Director for Cancer for NHS England, presented on the inequalities faced by older people affected by cancer, late diagnosis and reduced access to treatment. He felt there should be more transparency on quality and outcomes and praised patient power. He was the only speaker who used the word cure and I applaud him for that. I was lucky enough to ask the question: what assessment has been made of how the outcomes for patients with rarer cancers in the UK compare to those in Europe and what more could be done in the run up to 2020? Sean provided a detailed, positive answer that intimated that  rarer cancers will be a focus for next round of International Cancer Benchmarking Project.

Time’s up. Conferences this challenging only happens before an election. Andy Burnham made the most of his opportunity, he drew a line in the sand. I think there were wasted opportunities and crowd-pleasing pledges, although the record crowd knew that they had the power in 6 months. I’m worried that Labour is a danger to CML patients and I’m baffled thatpharma and Government still can’t get to grips that, ultimately, they both want the same thing. As more generic drugs come on to the market, they’ll both lose out, all this will happen over the next 10 years. In the meantime we have a responsibility to patients newly diagnosed and I hope that we continue breaking through.

Britain Against Cancer website

Cancer Drugs Fund extended until 2016

Whilst I applaud and welcome the news that the Cancer Drugs Fund (CDF) has been extended until 2016 with a budget of £200m a year it’s important we don’t see this as a win and look for the next battle. It is likely that this ‘new’ £400m has been top-sliced from the NHS budget in a similar fashion to original CDF thereby creating a problem at another level.

Let’s also not forget that the CDF was established in order to provide a means by which National Health Service (NHS) patients in England can get cancer drugs that are not routinely available on the NHS. This includes drugs like dasatinib (treatment for CML – Chronic Myeloid Leukaemia) that effectively saves lives (like mine) but for some misguided reason are rejected by NICE (National Institute for Health and Care Excellence). The new value based pricing (VBP) system that we were expecting next year appears to have been swept under the carpet, presumably because when the government did the sums it was going to cost them more than £400m. So our new £400m is a stay-of-execution. Get the next election out-of-the-way, note that this 2 year extension ties very nicely into the coalition term, and make an unpopular decision at the beginning of the next term if the election is won. In the meantime the Conservative party can bang their drums over the next few days at the party conference to the tune of being saviours of cancer patients everywhere. Not sure how people who are suffering with other illnesses are going to feel about that one.

Even I’m astounded by the level of my own cynicism but in this case I feel it is well founded. The complete and utter failure of VBP to even emerge from the starting blocks and the countdown to the end of the CDF left the coalition with no alternative.

Patients deserve the best treatment. We should not be held hostage by pharmaceutical companies or be pawns in politics. Much of the problem lies with NICE, their flawed processes and their reliance on limited information about the clinical effects of new products supplied to it by the pharmaceutical industry. There is much to unpick. In the short-term we’ll save lives and I can’t be angry about that but in the long-term the system will still be in a mess. What we’ve been presented isn’t a solution, it is another finger in the dam and I’m losing count of the number of holes.

Kris Griffin

BBC NEWS: Cancer drugs fund ‘to be extended’ until 2016

SKY NEWS: NHS’ Life-Extending Cancer Drug Fund Extended

The Guardian: Cash injection to keep cancer drugs fund running for two more years