Tag Archives: progress

All for one, and one for all! Patient power at ESMO 16

Irish melanoma patient advocate, Kay Curtin, blogs about what she took away from ESMO 16.

Irish melanoma patient advocate, Kay Curtin, blogs about what she took away from ESMO 16.

I had no preconceived idea of what ESMO 16 would be like, I applied with an open mind. How would it differ to other conferences in terms of the patient advocacy track would be the litmus test for me as a patient but also an advocate.

The Patient Track at ESMO made it feel I had a right to attend the conference – funny considering I am the one with the disease, the whole conference was based on!! But it has felt that way in the past, like you are being allowed to watch – this was different. This was not just for the medics, what we as a group had to say was just as important and relevant as anything that was revealed at the scientific presentation sessions. The topics covered were wide ranging and engaging, they ran not in parallel with the scientific sessions, but were given proper respect within the running order and it showed.

There was overflow needed for most Patient Track sessions, and those that were attending to listen were not just Patient Advocates, but the Oncologists, the Researchers, and the Pharma representatives. That’s because what we have to say is important and well informed – this is not our job it is our lives, so what could be more important to us?

Often the general public don’t understand the complexities of difference in cancer until you get one. It’s not a topic one reads up on for fun, most only keep up if they are personally connected. Also, all cancers are not created equal – it can become all too apparent that maybe you didn’t get the one with the most support or media air time or the most funding attached to researching it. But at the ESMO patient’s track this year I didn’t feel any of that. I felt instead part of a movement, a revolution of sorts that brought us all together bound by the one thing we have in common: a deep rooted desire to achieve the best for patients no matter what type of cancer they have. We are all in the same boat, there was no paddling your own canoe at ESMO.

“I felt part of a movement – a revolution of sorts”

Did I learn anything from my experience? YES. I am more confident in my connection now to Europe in my approach to my advocacy: I can reach out to many different branches of cancer communities, and advocacy support networks across the continent, and get help and information that’s still relevant to my community. We can help influence change that benefits patients wherever they live. Together, in solidarity we can achieve much more, we can work for equality of access and support for all, regardless of our cancer type or geographical location, we don’t leave anyone behind it’s a sort of unwritten rule, we go back to pick them up and carry them with us, all for one and one for all.

Kay Curtin also blogs at https://irishmelanomapatients.wordpress.com/

The EU’s cancer community: better with the UK?

Marc Beishon

Marc Beishon

Next week the people of the UK will vote on whether to remain in the European Union or leave it, a decision that could have far reaching implications for the future of the European ‘project’. In the UK, there has been increasingly bitter exchanges between the two camps about whether the country (or indeed the four constituent countries) will be better or worse off if there is a leave decision, and many misleading and often untrue financial figures have been put forward as ‘fact’.

While there has been little debate on what general shape the EU will be in following a UK exit, there has been some revealing discussion about some aspects of European-wide cooperation, notably research, and cancer research in particular. There has often been debate about how good Europe is at uniting cancer research to rival the powerhouse that is the US, and now some are arguing that the UK, as the leading biological research nation in Europe, may undermine progress if it were to leave the EU, and could also harm its own efforts to raise healthcare standards.

Writing in Lancet Oncology, five senior cancer and biomedical researchers, including Nobel laureate Paul Nurse, note that the UK has learnt about better care from other European countries, given it has lagged in outcomes for some time; has participated in more than 80% of cancer projects funded by the EU’s 7th framework programme; and generally, “the benefits of these collaborative European approaches so far have been major and can still increase, and are greatly facilitated by the EU”. But while much collaboration should continue, UK researchers may not be able to access EU funding, and free movement of cancer researchers between the UK and Europe could be halted.

Also in Lancet Oncology, Josep Tabernero and, Fortunato Ciardiello – the latter the current president of the European Society of Medical Oncology (ESMO) – argue that the broader aims of spreading research monies from the Horizon 2020 seven-year science programme, the biggest EU research programme in history, around Europe could be at risk from ‘Brexit’. They say too that the European Medicines Agency, currently based in London, would have to find a new home. “Post-exit uncertainty would inevitably affect European oncology research and care and would necessitate a lengthy period of adaptation as we grapple with the aftermath,” they say.

It is certainly also possible that EU institutes such as the Joint Research Centre, which carries out much work on areas such pan-European cancer information databases and the European Commission Initiative on Breast Cancer, could suffer.

But Angus Dalgleish, professor of oncology at St George’s University of London, has pointed out that the seven of the top nine universities are in the UK, which is unlikely to change, and European collaboration in science has been in place long before the post-Lisbon Treaty EU. “Examples abound, such as CERN, the European Molecular Biology laboratories, the European Organisation for Research and Treatment of Cancer (EORTC) and the European Space Agency,” he says. “It is a myth to think that if we left the EU we wouldn’t be part of these great collaborations, which already include many countries that are not in the EU, such as Switzerland, Norway and Israel.” (Note though that Dalgleish is also a member of the UK Independence Party.)

He would probably point too at Cancer Core Europe, the new group of elite cancer centres in Europe, including Cambridge, that is pushing ahead with large scale collaborative research.

And certainly there has been much frustration with the EU, in particular with the much criticised clinical trials directive of 2001. But that was reformed in 2014, and then just recently the European Parliament has adopted the EU General Data Protection Regulation (GDPR), which ESMO describes as “crucial” for the future of cancer research as it includes one-time consent for retrospective research on clinical data and biological tissues, and aims to harmonise the different frameworks governing health research across the EU’s member states. Under the current Juncker commission in Brussels there is also a commitment to weed out unnecessary regulation.

If the UK does vote to leave, there will be several years of negotiation and perhaps the country will continue to participate in EU research programmes as before, and it will certainly have to conform to regulations such as the GDPR in international work that involves Europe.

But whichever way the vote goes, one positive result is that Europe’s cancer community has come under renewed focus from several angles – workforce, research and care – even if its value under the EU umbrella is contested.

ABC steps up to fill the gaps in metastatic breast cancer care

Marc Beishon

Marc Beishon

 

The third Advanced Breast Cancer consensus conference – ABC3 – took place last month at its regular Lisbon home. ABC is the world’s only international consensus meeting devoted to the care and treatment of women and men with locally advanced and metastatic breast cancer. At each ABC conference, a large panel of experts adds and refines guideline statements for managing patients, with the aim of promoting them around the world for all countries, including those that lack the resources of developed nations.

ABC has contributed greatly to a fundamental change in thinking about metastatic disease. No longer do oncologists raise doubts about the feasibility of guidelines for treating such patients – the argument that there are too many variables among individuals is not often heard now.

And the conference has done much to unite the various parties in the advanced breast cancer community – in particular, patients and advocates participate on an equal basis with physicians (including on the consensus panel) and there is also a wide spectrum of professional expertise, again on the panel and in the conference sessions. Psycho-oncology, supportive and palliative care, health economics and survivorship all had prominent positions alongside scientific progress, and a complementary stream for advocates also allowed networking among patient representatives from many countries.

It’s not easy to break down barriers, particularly between doctors and patients, and ABC co-chair, Fatima Cardoso, reminded delegates that the conference has a mission for all to be respectful of the views of others. She also introduced the first results from a major new study sponsored by Pfizer and supported by the European School of Oncology, entitled ‘Global status of advanced/metastatic breast cancer: 2005-2015 decade report’, in which patient care perspective and public understanding have been surveyed across as many as 34 countries, and which also reports on scientific progress (disclosure – I am on the steering committee for the report).

Big gaps remain in areas such as patient communication, involvement in decision-making, and public awareness, where many people still think metastatic breast cancer can be cured, and some prefer women not to talk about it. Dian ‘CJ’ Corneliussen-James, of US group METAvivor, told the audience that prejudice is still a major problem, and that metastatic patients can be made to feel unwelcome by some advocacy groups. There are indications that overall, quality of life may not have seen much improvement.

Dian ‘CJ’ Corneliussen-James spoke about prejudice still affecting metastic breast cancer patients

Dian ‘CJ’ Corneliussen-James spoke about prejudice still affecting metastatic breast cancer patients

In the final session at ABC3, the consensus panel voted on new and changed statements in the guidelines, which will be published next year. There was heated discussion about some while others sailed through.

Briefly, there are important new statements concerning the use of objective benefit scales to assess drugs (e.g. from ESMO and ASCO), which may help to control costs, and on the need to design clinical trials that answer practical questions such as the sequence of using agents.

There are also new statements on survivorship, which is becoming more important as the number of women living with advanced disease for longer rises, and on several supportive care issues.

The consensus panel vote on new and changed statements in the guidelines

The consensus panel vote on new and changed statements in the guidelines

There has only been one new drug approved for the metastatic setting since ABC2, palbociclib, but new data on other drugs such as pertuzumab have changed some statements. The point was made in the conference that innovation in advanced breast cancer is now lagging other tumour types, such as lung cancer and melanoma.

Overall, the conference was notable for the continued integration of patients and those supporting patients into the programme. A highlight was Anna Craig, a young mother from the US, and her video, I am Anna, which was screened for delegates.

See @ESOncology and #ABCLisbon for tweets.

Smoke gets in your eyes

Simon Crompton

Simon Crompton

The title of Europa Donna’s annual London symposium last week was “New directions in breast cancer”. By the end of the evening, possible new directions were clear, but the route to take was not.

One of the two speakers was Daniel Leff, a cancer surgeon from Imperial College London, who addressed the difficulties of defining the correct margins when surgically removing breast cancer. The object had to be, he said, reducing the chances of reoperation.

He tantalised the audience with the question: “Can surgical smoke be informative?”

Potential of spectrometer analysis

Researchers at Imperial have used mass spectrometers to analyse the smoke arising from tissue incision with electrosurgical knives – a technique known as Rapid Evaporative Ionisation Mass Spectrometry (REIMS). Different types of cell produce different chemical concentrations when burned, so the chemical profile can indicate whether the tissue being cut is cancerous or not.

Identification of cancerous tissue using the technique during surgery, said Leff, was 93% accurate.

It’s a truly impressive technological development, that has potential to radically reduce reoperation rates for breast cancer.

The cost question

But how much did the machinery cost, asked a member of the audience? Half a million pounds, answered Leff. And how much did a pathologist cost? The answer was not given, but the point was made…

Pathologists already have advanced (and cheaper) techniques which can accurately indicate to surgeons which areas are cancerous and which are not. The question, said audience members, was why they were not being used. Leff himself acknowledged that pathology analysis using frozen section and touch imprint cytology were highly effective ways of determining the extent of breast disease and reducing the need for re-excision. But they are not widely used in the UK.

Novelty intoxication

On the systemic therapy side, Stephen Johnston, Professor of Breast Cancer Medicine at the Royal Marsden Hospital, spoke of the real promise of the drug Palbociclib as a first-line treatment for ER-positive breast cancer, and (in combination with Fulvestrant) as a second-line treatment as well. The cost of Palbociclib? Around £90,000 for one year’s treatment. The pressing question of how such expensive drugs are to be made widely available was raised, but not addressed.

New directions in breast cancer are exciting, involving, often inspiring. But we know how easy it is to become intoxicated with novelty and infatuated with technology. Sometimes, it isn’t new directions we need to hear about, but what is already here but under-utilised – and how we can best use what is proven, affordable and practicable to benefit the greatest number of women possible, as soon as possible.

Europa Donna, the European Breast Cancer Coalition, has a Facebook page.

 

 

 

 

 

Bold policies for progress north and south

anna portrait  picWorking in silos has long been a problem within the cancer community, as people engaged in increasingly specialised fields struggle to remain aware of the bigger picture. So it can be important, on occasion, to bring the different constituents together around a single agenda.

One might have wondered, however, whether the World Oncology Forum, which gathered almost two months ago in Lugano, Switzerland, might not have been a little over-ambitious in setting an agenda that focused on two topics that are poles apart in almost every respect, including the geographical.

The first of these, fixing the ‘broken model’ of new drug development, is a priority issue for the northern hemisphere. The second, addressing unmet need for the most rudimentary detection, treatment and palliative care, is the priority in the South. The opportunity to explore these challenges and the associated policy implications, within a single gathering, however, turned out to be remarkably constructive.

wof collage Hearing about some of the best examples of low- to middle-income countries that have taken well-planned, system-wide, sensibly financed steps to get the widest possible access to the best possible early detection, treatment and follow-up showed just how much can be achieved for cancer patients, even with modest resources, by simply getting the fundamentals right.

While hearing about the cost, both in health expenditure and overtreatment, of squeezing out additional survival benefit for patients in better resourced health systems brought home how unsustainable current approaches to developing new treatments are becoming, even for world’s wealthiest countries. The message that came out was about priorities.

  • Don’t waste resources on expensive equipment and therapies if the money can be better used getting the fundamentals right for everybody who needs them.
  • Don’t waste resources on developing new therapies unless they aim high – which means tackling resistance rather simply chasing cancer cell evolution from dependence on one mutated pathway to the next.

Bold policy initiatives that champion the public interest will be needed at international and national level to achieve what must be achieved. The task of the 35 assembled experts, leaders and innovators in their own fields, was to spell out the core elements of such initiatives.

As keynote speaker Paul Workman, chief executive of the UK Institute of Cancer Research, points out in the video below, the level of agreement among participants was remarkable, given the differences in their geographic and professional backgrounds and the strong views held by all.

The exact wording of the final policy appeal is currently being finalised. It will be published on this blog and in the March issue of Cancer World, which will carry a full report of this remarkable meeting. It will also feed into a discussion at the ‘Davos’ World Economic Forum on meeting the challenge of the global cancer epidemic, if and when the organisers confirm that the issue has made it onto the final agenda at the end of January 2015.

Slides from most of the presentations are available now on the ESO website (access requires you to register with Club ESO).

War Against Cancer: the audited accounts

 


The truth in samll doses
Efforts to cure cancer are being hobbled by a culture that obliges researchers to think small and cautious while systematically overstating how much is being achieved.

Journalist and lymphoma survivor Clifton Leaf argues this case in his book The Truth in Small Doses: Why We’re Losing the War on Cancer and How to Win It.

His book is the culmination of almost 10 years of research, which generated a number of articles in Fortune, the New York Times and other publications along the way.

It is a call for a change in the cancer research culture, written by someone who knows what it is like to have their life hang in the balance, who believes in medical research, and who has devoted many years to trying to understand why progress is so slow and how we can do better.

In recognition of his achievement in opening up a lively and informed discussion within and beyond the cancer research community,  ESO awarded Leaf the first ever Best Cancer Reporter Lifetime Achievement Award, commending in particular his meticulous research and his ability to make sense of his material and tell the story in a way that is both compelling and constructive.

Resonance
The Truth in Small Doses is a joy to read, with a wealth of anecdotes that on their own justify the cover price. Like the one about the one-eyed surgeon, Denis Burkitt, who – in a goal-oriented collaboration with pathologists, virologists and an entomologist – solved the riddle of the aggressive tumours of the jaw that were killing so many children at his mission hospital in Kampala, with support from a £250 research grant, a 1953 Ford Jubilee station wagon, and a neighbouring hospital director who had a way with cars.

But Leaf also describes a world that cancer researchers are all too familiar with: endless applications for research grants; keen young scientists, full of ideas, obliged to focus on ‘safe’ well-explored topics, with enough a priori evidence to convince grant panels there is a good chance of a positive outcome.

Some points in the book are certainly open to challenge. When it comes to playing it safe, it could be argued that industry is more of a problem than academia. And while there are good reasons to argue, as Leaf does, for more research to be directed at tackling the disease at its earliest or precancerous stages, there are other innovative approaches with an equally strong scientific rationale that suffer the same neglect.

His core message, however, clearly resonates with a widespread sense of frustration within the cancer research community. Leaf speaks the truth, which explains why this book has been widely welcomed.

Going over the accounts
A financial journalist by background, Leaf makes good use of numbers to illustrate his points.

Numbers like these:

691 – the number of times “cancer breakthrough” was mentioned in the media between January 1990 and November 2003
71 – the number of new cancer drug approvals over the same period
45 – the number of approvals for new drugs (rather than new uses for existing drugs)
12 – the number of those new drugs that could show they actually helped keep people alive

Or these:

65,000 – the number of papers published by 2013 on p53
24,000 – the number of papers published by 2013 on c-Myc
$100,000 – estimated cost per study
0 – the number of cancer therapies based on these targets

Or on the process of applying for an R01 grant, the bedrock of medical research funding in the US:

260 – the number of pages in the Application Guide
23 – the number of steps in the application procedure
1 year – the average duration of an application process
1 in 10 – the chance of success

Or these, on the chances of becoming a principal investigator before your 36th birthday:

1 in 20 – the figure for 2013
1 in 4 – the same figure back in 1980

What the figures reveal, argues Leaf, is a culture centred on generating data that can be published rather than generating knowledge that could lead to a cure.

Everyone who wants to see faster progress in curing cancer, and young scientists who don’t want to waste their most creative years, have an interest in reading this book.

Clifton Leaf is deputy managing editor at Fortune. He will be formally presented with the Best Cancer Reporter Lifetime Achievement Award by Franco Cavalli, chair of ESO’s scientific committee, at the International Conference on Malignant Lymphoma in Lugano, June 2015.