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.
Access CML Drugs 