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Extreme oncology in Romania

Geta Roman is a Bucharest-based freelance journalist writing about history and medicine. For more than 10 years she was a health editor for Romanian newspapers Cotidianul and Evenimentul Zilei

Geta Roman is a Bucharest-based freelance journalist writing about history and medicine. For more than 10 years she was a health editor for Romanian newspapers Cotidianul and Evenimentul Zilei

Being an oncologist in Romania is an extreme job. Being a patient with cancer in Romania is an extreme experience.

We have 250 oncologists to care for at least 500,000 people with cancer (the figures are uncertain because the National Cancer Registry is not up and running). Our hospitals are crowded, we lack medication, many patients waiting for chemotherapy or radiotherapy, and doctors and nurses are overwhelmed. At the same time, oncology is a field rife with corruption, with the patient caught in the middle.

The National Health Insurance and Ministry of Health are trying to find solutions: more money has been offered to doctors who work in emergency departments, and the private sector is now involved in providing radiotherapy and chemotherapy treatments, paid for by National Health Insurance. But it’s nowhere near enough to resolve the crisis in our cancer services.

The young doctors who are preparing to take the place of the older generation when they retire, and the older doctors who are forced to care for more patients than they can handle, propose the same solution for resolving this crisis: more money for doctors’ salaries, to keep them from leaving the country.

An experienced oncologist earns around €1,000 per month working in the public health system, while the younger ones earn only around €300-400 depending on their experience.

Flori Vladutescu is a Resident doctor in her second year in one of the biggest hospital in the country. She chose to become one because of the impact of cancer on her own life: her mother died from breast cancer when Flori was only four years old, and in the past years she has given close support to her sister, who was diagnosed with stage III breast cancer. She would like to know whether they have the breast cancer gene mutation, but the tests are too expensive, and are not covered by the public system.

Right now, Flori has decided to stay in Romania to care for people with cancer. She’s been promised a job in Giurgiu, 60 km from her hometown, Bucharest. “Cancer patient are special, more sensitive, you have to work with them to solve the physical problems, but you need a special attitude. I learnt that from my oncology teachers, who are also different – nicer, more human…” says Flori.

Initially she had intended to leave the country after finishing her residency. But she changed her mind, and is set on taking the job in Gurgui. “I’ve already gone there. I met the doctor who I will work with, and I saw all those patients who need help. I felt for them.” Her biggest challenge, she says, will be how to manage financially. “Half my salary will go on petrol, if I choose to commute from Bucharest every day” She think she may look for somewhere more local to stay.

“Half my salary will go on petrol”

The doctor in charge of the oncology outpatient clinic in Giurgiu, Florin Onisim, says that poor organisation ends up wasting doctors’ time, making an impossible job even more impossible. A new system of electronic registration was implemented over the past year, but no additional staff were recruited to input all the data. “It is extremely bureaucratic,” says Onisim. Before this system, I was able to see 70 people daily, now only around 30–35,” he says.

People living in and around Giurgiu are relatively lucky in one respect – they live not far from Bucharest, which has the biggest concentration of public and private cancer services in the country, so most of them have the option to travel to find an expert.

The situation is worse in other parts of the country. In Vaslui, one of the poorest cities, along the eastern border of Romania, the county hospital – which caters for a population of 375,000 – has no oncologist at all. In Resita, a city with 65,000 people, in the west part of Romania, the only oncologist in the area is responsible for the more than 8,000 patients recorded in the cancer registry.

Every time the local authorities try to hire oncologists, they face the same obstacle: no doctors are interested in going there, because of the low salaries offered by public hospitals. They prefer to join the exodus of more than 10,000 doctors who have gone to work in other European countries since 2007, when Romania became an EU member. Or they stay and work in the private sector in Romania.

The solution to both is better payments for doctors.

Cancer patients receiving chemotherapy at a major Bucharest hospital

Cancer patients receiving chemotherapy at a major Bucharest hospital

A Global License for Breast Surgery – my call to action!

speech in European Parliament cropped

Guest blogger Shirley Bianca, patient advocate and artist

I am a two-time breast cancer survivor. My diseased breast, which had a triple-negative collision tumour, was partially removed and immediately reconstructed with autologous tissue followed by chemotherapy and radiation. Exactly five years later a recurrence was diagnosed and the tumour was successfully removed again.

I am lucky to have received top-quality health care. However I discovered that many women with breast cancer, knowing they need surgery, are afraid of looking disfigured after their operation. This made me curious!

I found out that many breast centres have no specialists in breast surgery, and that many doctors who perform breast surgery may do just a handful cases a year. This made me furious!

I then learned that breast cancer surgery is not seen as a specialist competency, and surgeons do not require a specific licence to operate on breast cancer patients.

This lack of specialization results in too many patients with mutilations and unnecessary mastectomies.

This is heart breaking and unacceptable!

AN URGENT CALL TO ACTION

I am calling for the concept of a formal global license in specialist breast cancer surgery to be established by the World Health Organization, with oncological and reconstructive surgery integrated as a part of breast surgical training worldwide.

A single approved academic and surgical training programme should be offered worldwide for the licensing of breast cancer specialists. This would make it possible to set up a global Register of Specialists available online to breast cancer patients.

I would like to appeal to breast surgeons worldwide to support this call and help me establish a working group to set up a global initiative for Breast Surgery Licensing, with the goal of obtaining support from the WHO.

I count on you, because we affected women deserve the best treatment!

I strongly believe that only specialists in breast surgery should be allowed to operate on breast cancer patients.

We need more “Expert Eyes” (see below)

We need Global Licensing of Breast Surgery

If you support this call and feel you can help, please contact me at Shirley.Bianca@gmx.net

The Expert Eye

the expert eye

The Expert Eye was painted by Shirley Bianca. This image has now been adopted as the symbol of her campaign for a Global Licensing in Specialized Breast Surgery.

Shirley has also used her art to reach out to other women diagnosed with breast cancer, many of whom deeply fear surgery to their breasts. “Message of Hope”, a series of 22 paintings, has been exhibited around the world – most recently in the European Parliament – and can be seen here.

 

7

Targeting and Trust: QoL in clinical research

Roger Wilson, a patient advocate and Honorary President of Sarcoma Patients Euronet

Roger Wilson, a patient advocate and Honorary President of Sarcoma Patients Euronet

I took a random selection of 20 abstracts from ASCO 2016. None of them mentioned that quality of life had been researched in the study but looking up the detail held in clinicaltrials.gov it turns out that 16 of them did have a quality of life component in them. Whether that will be reported when the study is published is a different question. Experience suggests that it will be mentioned, but that for the most part the detailed QoL data will go unreported.

These are the days of ‘big data’ in healthcare. Increasingly we are seeing databases linked, common standards being adopted to allow similar fields to be aggregated, and increasingly comparisons can be made between key outcomes. The International Cancer Benchmarking Partnership is providing fascinating comparisons on survival outcomes from several different administrations – and it is getting into the detail of differences in the ways that national data is gathered.

The first QoL in cancer study appears to have been in the 1970s. The first paper I could find which looked at developing a methodology dates from the 1980s. We now have a proliferation of methodologies dominated by the EuroQoL EQ-5D which gives the kind of generic background view needed for health technology agencies (HTA) to assess the value of the treatment. Other methodologies relate solely to the study to which they are being applied. Unfortunately for cancer patients, the EQ-5D is too crude report the kind of detail that cancer patients need to know to make informed choices about treatment. For that reason too it can only ever be part of the picture for HTA appraisals.

What do cancer patients need from quality of life information? The full picture of the impact of a proposed treatment in the context of the treatment pathway being followed. We want side effects information, how side effects are treated, and want to know how patients feel when taking the treatment in their own words, not those of some detached academic. We want to know about long-term side effects and what comes after if this treatment fails.

The pathway is the key issue in terms of quality of life – it is not a moment in time, it is life. However there are no data covering the succession of treatments, assessing the interactions that can arise as side effects aggregate, and the challenge of describing treatment and quality of life as end-of-life approaches is avoided.

I looked around to see whether anyone is aggregating quality of life data in a way which could provide this picture. No-one. Why not, after all there is at least 30 years’ worth of data around? The quick answer is the usual big data problem, different methodologies, data fields do not match, each study looks at the treatment being tested not at the patient. The pathway is ignored.

“No-one is aggregating quality of life data in a way which could provide this picture”

We are entering the world of targeted therapies. Targeting is a challenge for randomised studies: they can be unethical, either randomising patients when there is good evidence to indicate one arm is more effective than another, or using cross-overs, which invalidate the randomisation. Phase 2 studies usually do not include quality of life because there is no control group baseline with which to compare the treated patient. A strong response rate (60%+) is enough to ensure entry into clinical practice. One result is that patients are offered new treatments without being able to see a full picture of the step they are taking. Possibly just as important, health technology agencies are denied the whole picture of value which they need to make decisions.

Let us leave aside any questions about whether patients will accept such treatments – these issues disappear when survival itself is your primary challenge. Yet, as trials for targeted treatments reach statistical significance faster and with fewer patients than trials for traditional drugs, patients face increasing uncertainty about the impact of therapies they are taking. We need something to mitigate that uncertainty.

A first step would be aggregating existing QoL data to derive a picture of each cancer pathway, modified as clinical standards evolve. It would provide a baseline for comparing new treatments.

A second step would be using one tool/methodology for all QoL in cancer research. Agreeing that step when there are so many competing methodologies is likely to be difficult.

The third step would be requiring a relevant patient group to be the determinant of the measures to be adopted in each QoL study, small or large. Not easy to arrange but do-able.

A fourth step would be mandating full analysis and reporting of QoL data when it is undertaken in a clinical study. That should not be impossible.

If the cancer research community does not take on this challenge we could affect one of the binding factors of cancer care, trust between patient and doctor. Targeted therapy is an amazing development but we are journeying together into an unknown future built on that trust alone, something we haven’t done for more than thirty years.

We welcome contributions to this blog. If you have a topic you would like to write about, please send your post to Corinne Hall – chall@eso.net You can find our guidelines here – How to write a blog

 

 

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.

One in three of us: why I help spread the word about cancer

 

desiree branovici

Desirée Branovici is one of 42 peer advisors who help spread the word about prevention and early detection of cancer in the Botkyrka area of Stockholm. This is quite a challenging community to reach out to due to widespread economic hardship and language and cultural barriers. Desirée’s own multicultural background and fluency in Swedish, Romanian, Italian, French and English are invaluable assets for this role. Here she explains why she gives up her time to do it.

Years ago, when I was living in Canada, I had a conversation with some friends about cancer. One of my friends said that, according to statistics, 1 in 3 women will develop some form of cancer in their lifetime. The three of us looked at each other and we could all see fear in each other’s eyes: it could be one of us.

What I saw on my friends faces haunted me. Soon after that conversation I promised myself that I will fight this fear with everything I have. At the time I did not have any special knowledge or support for my fight, so I began to read as much as I could about cancer, about health in general. I became aware of how important it is to be informed about cancer. Information helped me address the fear. I started talking to my friends about it, to my work colleagues, to anyone interested and willing to listen.

Years later I moved to Sweden. While studying SFI [Swedish for Immigrants], a cancer survivor and project leader, Arja Leppänen, came to our class. She told us about a new cancer awareness project that she was leading in the nearby Botkyrka area. We could help spread the word about what we can all do to reduce the risks of cancer.

I was excited to have support and guidance from our municipality (kommun) to educate myself and also to reach to other people and help them. Our training was very interesting. The professionals from the Regional Cancer Centre were extremely helpful and engaging. They were happy to answer any questions and ready to follow up on our suggestions. We were given tools such as flyers to reach out to the many different communities in most spoken languages, and also our own personal cards. Arja and all the other people involved were always ready to help us with anything we needed.

“Understanding how a specific culture deals with sickness is important”

Reaching out to people from so many different cultures is no easy task. Speaking different languages and mostly understanding how a specific culture deals with sickness is important. Some cultures are harder to reach out to than others, but I find that a casual approach to the issue always works. For example, talking about healthy food and lifestyle is a subject that anyone is willing to discuss. Who doesn’t want to be healthy and happy?

I also like to talk to people about exposing themselves to unnecessary chemicals. I always get people’s interest and commitment to be more aware of what they are putting in their bodies and to be pro-active about their health. I always try to make them aware that a body well taken care of will help you win any fight, whether you are fighting a flu, an addiction or cancer. If it happens to one of us that has to fight this battle then one of us will always be there to help you make it through.

Waiting for the next crisis is not a plan

Guest blogger – Esther Nakkazi, freelance science journalist

Guest blogger – Esther Nakkazi, freelance science journalist

When the Ugandan Government announced, two months ago, its commitment to introduce the legal framework and funding for a comprehensive approach to cancer prevention and care, I welcomed their statement of intent, and wrote about it here on thecancerblog. It seemed like, this time, the Government was not just talking the talk but truly intended to walk the walk.

The recent, widely reported, final demise of Uganda’s sole radiotherapy machine gives people like me an early chance to see whether we were right to believe the Government’s promises.

This machine was donated by China more than 20 years ago, and has been beset with constant technical difficulties. Its Colbalt-60 radiation source, which requires replacing every five years (the half-life of Cobalt-60), was last replaced in 2002 – 14 years ago.

Even before the latest breakdown, one oncologist had discretely told us that the machine was no longer giving effective treatment, because it was unable to deliver the standard recommended dosage, and that it would soon be replaced. Officials from the Atomic Energy Council (AEC) had come calling in 2012 and recommended that it be disposed of, saying that it was unsafe and was exposing staff and patients to unintended radiation.

Yet the equipment has continued in use because 75% of patients referred to the Ugandan Cancer Institute (UCI) need radiotherapy – more than 100 people per day – and that has been the only machine available. As Mulago is the only hospital in East Africa that offers radiotherapy free of charge, it had also been treating people seeking treatment from neighbouring South Sudan, DR Congo, Kenya, Rwanda and Tanzania.

But of course none of these patients knew that, for the past few years, they had been getting treatment from a ‘condemned’ radiotherapy machine. So the final demise of that machine is a case of good riddance.

The failure of the Government to plan for its replacement, however, is still very bad news for the many patients who need radiotherapy right now. A replacement machine has been sitting in Vienna, Austria, since 2013. But the new machine cannot be housed in an old setting. Government officials have previously announced plans to build a bunker for it at the Ugandan Cancer Institute. However, they specified no time frame, and indicated no sense of urgency.

They talked the talk, and then sat back and waited for the inevitable crisis. The Government now has to find the $9 million needed to build the new bunker, and then get on and build it. Because of the rapid rise in the number of cancer patients, it also needs to buy additional machines – the Cancer Institute claims a minimum of four Cobalt machines are needed.

The only other options would be to fly patients to Nairobi or India for radiotherapy or buy a more modern machine, a linear accelerator, which does not require an underground bunker, though at a of cost about $4.5 million, that remains largely out of reach.

Whatever they do, they need to move fast if they are to convince anyone that their promises on tackling cancer are more than just talk.

Mulago Referral Hospital, where the single Cobalt-60 machine that has served the needs of Uganda's  population of 40 million has finally given up the ghost (Photo by Andrea Stultiens)

Mulago Referral Hospital, where the single Cobalt-60 machine that has served the needs of Uganda’s population of 40 million has finally given up the ghost (Photo by Andrea Stultiens)

 

Uganda's inaugurated a brand new $10 million comprehensive cancer centre last May. A brand new Cobalt-60 machine has been sitting in Vienna since 2013, waiting for a bunker to be built to house it.(Photo by Esther Nakkazi)

With no bunker to house the replacement Cobalt-60 machine, which has been sitting in Vienna since 2013, Uganda’s brand new $10 million “comprehensive” cancer centre lacks an essential treatment modality (Photo by Esther Nakkazi)

Publishing all trial results: a covenant with patients

roger Wilson

Guest blogger – Roger Wilson, Honorary President of Sarcoma Patients Euronet

A recent study from the USA published in BMJ highlights an issue which has been lurking under the carpet, despite the work of the All Trials campaign.

The study looked at the publication record of academically led clinical trials in the USA. It was led by Yale University. More than 5000 trials were identified as starting between October 2007 and September 2010. A number of these were excluded, leaving 4347 across 51 academic institutions to be analysed. Overall 2892 (66.5%) had been published by July 2014. The study has a comprehensive analysis by type of trial and intervention, institution etc and certainly satisfied me it had considered all the issues. It came to the sad conclusion that publication rates are very variable and there is “poor performance across leading academic medical centers in the dissemination of clinical trial results.”

The focus for All Trials has been on industry studies and great steps have been achieved. However this BMJ study shows that the academic world needs closer examination and needs to be provoked into action too. In Europe it may be less of a problem but we don’t know, we certainly cannot be sure. We have clear commitments about publishing from the European Organisation for Research and Trials on Cancer (EORTC) and from many leading academic collaborative groups, national and multi-national. Individual institutions have made commitments too but what is the real story? We don’t know. Is the positive action from the prominent few allowing others to hide away, ignoring the issue in the hope it will go away?

We don’t actually need a study like the one from the USA. We could just start to take action.

The best way of finding out would be through the registration authorities. Each sponsor should provide a simple table of studies sponsored, completion information and planned publication dates, regularly updated and made publicly available. This table could be entitled The Patient Covenant.  Any sponsor (quite often these are academic bodies) which has outstanding trial publications should be unable to register any new trial until their obligations are met.

In addition any principal investigator taking a study to ethics for approval should have his study placed on hold if trial publications are outstanding. This would give a two-tier coverage and will stop institutions breaching their covenant with patients.

“As patients we should be quite uncompromising about trial publication”

As patients we should be quite uncompromising about trial publication. There are no excuses for not publishing. Failure to do so violates the explicit promise made to patients entering the trial that it aims to provide clinical evidence, even failure to achieve a trial objective can still provide evidence. Not publishing impairs understanding and threatens the integrity of clinical evidence, squandering resources in doing so.

I was very taken by four verbs used in the conclusion of the study published by BMJ. Think about them. I use them above and I list them out of context below because I think it adds to their impact:

  • impairs
  • violates
  • squanders
  • threatens

If you are reading this you know the context; avoid these blistering criticisms.

We welcome contributions to this blog. If you have a topic you would like to write about, please send your post to Corinne Hall – chall@eso.net You can find our guidelines here – How to write a blog

Uganda says “we can” on World Cancer Day

Guest blogger – Esther Nakkazi, freelance science journalist

Guest blogger – Esther Nakkazi, freelance science journalist

“We can – I can – get involved in cancer prevention and control”

This is the theme for World Cancer Day being promoted by Ugandan health ministry.

And this year it seems that the government is not just talking the talk, it is walking the walk with plans to provide the legal basis and funding to support a comprehensive approach to cancer control in the country.

When the 10th Parliament convenes after the May elections, the Cancer Bill will be high up on the agenda.

Its primary objective will be to establish the Uganda Cancer Institute as an autonomous agency of Government mandated to undertake and coordinate the prevention and treatment of cancer and cancer-related diseases and conduct research.

With only 25 oncologists in the whole country, Uganda currently struggles to care for the almost 30,000 people who are diagnosed with cancer every year. Speaking at a press conference at the Ministry of Health ahead of World Cancer Day, Jackson Orem, Director of the Uganda Cancer Institute, spoke of his hope of increasing survival from the current rate of 20% to 50%, through improved prevention, earlier detection and care. And he sounded confident the proposed measures would be debated as planned. “The Cancer Bill is already before the committee of health. It will be their priority in the next parliament,”he said.

With 60% of new cancer cases caused by infections, immunisation programmes will be key to cutting new cases. Cervical cancer, associated with infection with the HPV virus, is the single biggest cause of cancer death among women, with Kaposi sarcoma, associated with HIV infection, and liver cancer, associated with hepatitis also major killers.

Anthony Mbonye, the commissioner for community health services at Uganda’s Health Ministry, spoke of the government’s commitment to vaccination programmes. “Human Papilloma Virus (HPV) vaccination against cancer of the cervix is now available across the country and girls aged 10 years can access it in all our health facilities,” he said, adding that the Hepatitis B vaccine is now part of the routine childhood immunisations, and vaccination is also available for adults in high-burden districts, and will soon be available across the country.

As an autonomous agency, the Uganda Cancer Institute will be a corporate body governed by a Board of Directors. The Bill spells out that the Institute will undertake and coordinate the prevention and treatment of cancers in Uganda, including providing comprehensive medical care services to patients affected with cancer and other cancer-related diseases, and coordinating cancer-related activities both within and outside Uganda.

The Bill also provides for the Institute to conduct on-the-job training in oncology and related fields for its staff as well as to provide public education and training on cancer.

Importantly it includes provisions for funding the Institute and its work.

Orem hopes this will be an important step to establishing a truly national cancer service. “We want every cancer patient to be diagnosed and followed up. We need to get their contacts so that they are always within our systems,” he said.

But his aspirations go beyond Uganda’s own borders. “The UCI,” he said, “will be the centre for training oncologists in East Africa in an effort to increase human resource in the region.

Grand opening of the new Ugandan Cancer Institute buildings May 2015

Grand opening of the new Ugandan Cancer Institute buildings May 2015

We welcome contributions to this blog. If you have a topic you would like to write about, please send your post to Corinne Hall – chall@eso.net You can find our guidelines here – How to write a blog

It’s not a war on cancer that we need, it’s a revolution

anna portrait  pic

Anna Wagstaff

The influential Economist magazine describes its mission as “to take part in a severe contest between intelligence, which presses forward, and an unworthy, timid ignorance obstructing our progress”.

So when it turned its attention to organising a conference on the “War on Cancer”, I registered for a press pass. I was familiar with most of the speakers, and I wasn’t expecting to hear anything I didn’t already know. But I thought The Economist might attract an interesting and diverse audience, and I was interested to hear how the discussion would go.

It did turn out to be interesting – but not in a good way. While the agenda was wide-ranging and the chair asked sensible questions to dig deeper into the issues, the audience was largely inanimate – except when the topic touched on new medical therapies.

When it came to the intricacies of the adaptive pathways approach to approving new drugs, the challenge of speeding progress through health technology assessment, the obstacles to trialling combinations of drugs in patients who stood to benefit most, the questions came thick and fast.

When the subject was how to provide care for escalating numbers of survivors, fix unacceptable variations in care quality, provide better access to different types of radiotherapy, or address missed prevention opportunities – silence.

Thinking about it, I should have expected this.

Yes, it was a well-balanced agenda, but the so-called war on cancer in reality lacks any such balance, and it is not surprising that this was reflected in the composition and interests of the audience.

Researching and developing new medical treatments remains the biggest hope for increasing cancer survival, and this effort deserves all the support it can get. But the extent to which this agenda dominates the ‘war’ strategy is out of all proportion to the contribution it is making to reducing death and suffering from cancer.

This point was made in different ways by many of the speakers.  Chris Wild, head of IARC, and Cary Adams, head of the UICC, talked about the central role of prevention, saying “We cannot treat our way out of cancer,” and “Only 3% of the cancer research budget goes towards prevention, and it’s wrong.”

Cai Grau, leader of ESTRO’s HERO project, talked about the role of radiotherapy, which accounts for around 40% of cancer cures, and has been shown to be a cost-effective treatment. He pointed out the benefit to patient outcomes that could be achieved by putting more effort into addressing the severe undercapacity in many European countries.

Francesco de Lorenzo, President of the European Cancer Patient Coalition, talked about the priority patients give to ending the treatment lottery. They want more attention paid to ensuring that wherever they are treated, they can trust their medical team to deliver high quality care.

Jane Maher, Macmillan’s Chief Medical Officer, spoke convincingly about what can and must to be done to ensure that growing numbers of cancer survivors get the support and care they need not just to survive, but to get their lives back on track and lead a fulfilling life.

What they were all saying was that we do in fact know how to make faster progress against cancer, we’re just not doing it. Sadly, this audience didn’t seem to see it as their problem. And this got me wondering about the war against cancer. Is the problem really one of “intelligence versus ignorance” as The Economist frames it, or is it that the people in the driving seat are so focused on their own agenda that the wider interests of the public, patients and survivors are being sidelined?

The problem may be that we are trying to fight a war when what we really need is a revolution.

 

 

 

“The purse is closed!” – this is no way to run a hospital

Rosa Giuliani, medical oncologist, S. Camillo-Forlanini Hospital, Rome, Italy

Rosa Giuliani, medical oncologist, S. Camillo-Forlanini Hospital, Rome, Italy

 

As a medical oncologist my primary interest is in helping patients to live longer and better. The best part of my job is the integration of clinical and molecular views: see the problem in the clinic, look for answers in the lab, bring back the solution to patients. I wish it could be as simple as that.

Research & development have a price, which is often difficult to understand. Why new drugs and devices cost that much, and not a penny less, is a complicated conundrum for many of us. The EU regulatory and reimbursement systems, the lack of a universal health policy through Europe and the profound economic crisis are regularly debated.

While I was at ECCO participating in debates on the need to promote equity and defeat disparities in access to precision medicine in Europe, hospital managers where I work notified the oncology department that the budget allocated to cancer drugs expenditure was over:no “expensive” drugs could be purchased until the budget for the new year will be discussed in January. The purse was closed. Meetings followed, some very unpleasant; poor use of resources by medical staff was implied, not even too subtly. Of course, this prompted self-examination: am I a good oncologist? Am I following guidelines? Am I spending money for my pleasure to give drugs?

After this last question, I realized that I was losing my mind and luckily, I returned to my senses. I respect rules, I need rules, I love rules. I appreciate fair rules. Budget negotiations at local hospitals are as obscure as the procedure of setting prices at EU or national level. A rule, which lacks of transparency, is not fair. The fact that the rules are set and dealt by people who are not prepared to manage the process, is terribly wrong. The overwhelming gap between cancer politics at EU Headquarters, where precision medicine is being promoted, and cancer politics at local level, where the only interest is that 2+2 should be equal to 3, because 4 is already too expensive, is frightening.

Money is an important part of the equation: resources are not infinite and their rational employment is of utmost importance. The process of drug development is not cost-effective, and many managers are not, because they have not been adequately prepared to deal with a different type of economy. Cancer medicine cannot be dealt as if providing water or electricity.

The global curriculum for being a good medical oncologist has dramatically changed in the past 10 years. Medical oncologists in 2015 cannot neglect molecular biology, health policies, precision medicine and so on. The same change should happen with managers who allocate resources for health politics, especially at hospital level. Being a good accountant does not suffice anymore, just as being exclusively a good clinician is not enough. Another level of knowledge and preparation is needed. And honestly, sometimes, a little bit of emotional intelligence would not do any harm.

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