Category Archives: News

“Voices” – a new home of debate

If you’ve noticed that there haven’t been many posts on the Cancer Blog recently, there is a good reason. We’re now posting in the new “Voices” section of the Cancer World website. Please go and have a look. Like the Cancer Blog, the Voices section provides lively viewpoints and analysis from a wide range of people working in, and affected by, cancer.

This blog began nearly three years ago – a spin-off to the European School of Oncology’s Cancer World magazine. Our aim was to provide a regular showcase for opinion that could lead to the conversation, collaboration and change that is so urgently needed in cancer.

Fifty four posts later, that aim – intrinsic to Cancer World – remains. But in recent years the Cancer World website has grown and flourished, and it now seems entirely appropriate that this should be the home of debate, providing a showcase for cancer voices – whether they belong to doctors, researchers, patients, advocates or policy makers.

So we hope you’ll continue to follow us at our new home – and contribute posts too by emailing us your ideas to staff@cancerworld.net

In order to stay up to date with our posts in “Voices, news from the Cancer World website and details of Cancer World articles we invite you to subscribe to our Cancer World Newsletter. Let the conversation continue…

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.

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)

Getting cancer information to those who need it most

lena sharp

Lena Sharp is Head of Cancer Care Improvement, Regional Cancer Centre, Stockholm-Gotland

arja_leppanen cropped

Arja Leppänen is a cancer survivor and leader of the Stockholm Regional Cancer Centre’s project in Botkyrka

Associations between levels of education, socioeconomic factors and cancer are well documented. Stockholm is no exception – the data show important disparities across the city in the rates of new cancers, rates of survival and attendance levels at screening.

At Stockholm’s Regional Cancer Centre, we are trying to find the best way to help communities most at risk to take action to protect themselves. We’ve started by focusing on a community with the lowest mean income and educational level in the region – the south Stockholm suburb of Botkyrka, which has a large migrant population, with residents originating from more than 100 countries and speaking 160 different languages.

One part of the project is to recruit and educate volunteers from the community to serve as ‘Peer Advisors’. Their role is to inform their peers about health and how to reduce their risk of developing cancer. We now have 42 peer advisors, women and men, the youngest being only 16 and the oldest 63. They originate from 30 different countries, and each speak at least four languages. Six of our peer advisors have been diagnosed with cancer and the others have family members or friends with cancer.

We will compare participation rates in cancer screening programmes before and after the project, and gather supplementary evidence using  surveys and qualitative interview data. The results from the evaluation will guide our future work on addressing multicultural inequalities in cancer care in the region.

One of the peer advisors is a well-known rapper and song-writer, Dogge Doggelito. He lost his young wife to cancer some years ago, has always lived in Botkyrka, and is a role model for young people in the community. His involvement in the project has been very important and has generated extra attention from media.

CC7A3147

Peer advisor Mary-Louise Gwada perfoming at a “Rap-school” for project team and peer advisors, led by Botkyrka’s own Rap-star Dogge Doggelito (left)

20160115 Dogge o Arja

Dogge with project leader Arja

Before the start of the project, the peer advisors were trained for their new role, learning about the European Code Against Cancer, cancer screening, cancer biology and care, patients’ rights, motivational interviewing, and more.

A key part of this project is to organise public information activities in the community to raise awareness about cancer and cancer prevention. Much of this is done in collaboration with cultural organisations active in the community.

Our experience so far is that this work is bringing us closer to people we usually do not reach with other health campaigns in Swedish. The main challenges we’ve encountered include issues related to language barriers, health literacy, and different cultural and/or religious attitudes about cancer.

In addition to the excellent collaboration between people working at local and regional levels, the involvement of people who are not healthcare professionals as well as patient representative at all levels has been very important for the success of the project. The peer advisors are in a unique position to reach populations who may be unfamiliar with the national healthcare system, and may have a low level of health literacy. The fact that the project manager is a cancer survivor seems to have been an important factor in establishing the legitimacy of the project in the eyes of the local community.

The project has attracted good media coverage such as in the local newspaper Södra Sidan , and features on the local council website  and Facebook page. Further information can be found on the website of the Stockholm-Gotland Regional Cancer Centre

 

IMG_4607

Peer advisors spreading information on what people can do to reduce their cancer risk

 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

Bowie, battles and moonshots: why words matter

Marc Beishon

Marc Beishon

David Bowie died of cancer last week, aged 69, after what his family said was a ‘courageous 18 month battle with cancer’. The singer was celebrated for his many creative phases, such as the time of the famous Space Oddity, even as British astronaut Tim Peake was preparing for a real space walk on Friday.

The day after Bowie’s death was announced, President Barack Obama said in his State of the Union speech that he was backing a ‘moonshot’ against cancer, putting vice president Joe Biden in charge of ‘mission control’ (Biden had lost his oldest son, Beau, from a brain tumour, and had earlier announced his interest in leading renewed investment in cancer).

Obama drew a parallel with the rapid progress in putting men on the moon in the 1960s with the promise of modern day medical science, and said: “For the loved ones we’ve all lost, for the families that we can still save, let’s make America the country that cures cancer once and for all.”

It’s reminiscent of Richard Nixon’s ‘war on cancer’ in 1971, not long after Bowie launched his fictional Major Tom into space and Neil Armstrong did his moon walk. It’s good to see though that the war metaphor seems to have been superseded by an appeal to the might of science, although there are echoes of the Cold War space race here, and we’ve also seen more ‘moonshots’ against cancer and other diseases – it’s another overcooked metaphor along with ‘war’ (the top US cancer centre, MD Anderson, launched a moonshots programme in 2012, for example, but at least MD Anderson recognises that cancer is many ‘moons’).

There are serious points about the use of words. Individuals such as Bowie and, shortly after, British actor Alan Rickman, are still said to be engaged in personal ‘battles’, often in secret. The word battle appears in almost all headlines or news stories about people dying from cancer, and the war and ‘fighting’ theme shows no sign of abating.

It’s rare to see the word ‘battle’ used for people with other chronic and terminal conditions, such as dementia, heart disease and COPD (chronic obstructive pulmonary disease), even though there are many challenges for sufferers and carers. Cancer is also invariably seen as terminal regardless of the type and stage, and progress made in cures, so people are often characterised as ‘battling’ a condition that exhibits few symptoms, has fairly benign treatment and has a successful outcome.

Conversely, a battle against a cancer at a stage that is terminal is framed as something that could perhaps have been fought successfully. It’s why many advocates and patients, particularly those in the metastatic community, criticise the use of ‘war’ and ‘fighting’ terms, such as in a recent US government agency campaign aimed at younger women and breast cancer, Bring Your Brave. Some cancer charities also tend to focus on military metaphors in their fundraising.

Debate and research about the ‘violence’ metaphor in cancer has stepped up in the past few years. An article last year in JAMA notes that “the use of the battle metaphor implies a level of control that patients simply do not have”, and “the continuous urge to win the battle extends to oncologists, who actively treat patients for too long”. Some want a ban on military metaphors (along with other terms used in oncology such as ‘aggressive’ and ‘well-tolerated’).

Recent research includes a study that finds that “exposure to metaphoric language relating cancer to an enemy significantly lessens the extent to which people consider cancer-prevention behaviours”. War metaphors emphasise power and taking aggressive actions toward an enemy – but most cancer prevention behaviours such as quitting smoking involve limitation and restraint.

But other research is more nuanced. A study in the UK looking at the use of the metaphors ‘violence’ and ‘journey’ (the more neutral term put forward as an alternative) by patients and health professionals finds that “violence metaphors are not by default negative and journey metaphors are not by default a positive means of conceptualising cancer” as there are positive and negative aspects of both in terms of empowering or disempowering people.

There are a lot of issues at stake, then, in how the war theme is used, from futile treatments at the end of life, to the wellbeing of those with metastatic disease, and strategies to help patients cope with treatments (young people may respond better to a ‘fight’. Further, there are the wider contexts of fundraising, research directions and the perception of cancer in society (as we recently noted, many people think metastatic breast cancer is curable).

As for the latest moonshot, there’s a well-worn cliché about something not being as complicated as ‘rocket science’. In fact, rocket science is not especially difficult but cancer science is clearly extremely challenging. There’s a danger perhaps of overemphasising ‘big science’ and all the ‘omics’ and not investing in prevention and delivering a high standard of current care (many in the US and elsewhere don’t get optimal treatment, and a moonshot against tobacco could save many lives globally).

Finally, philosophical words from David Bowie: “Planet Earth is blue. And there’s nothing I can do.” Except by all accounts his remaining time after diagnosis was tremendously productive and may become an exemplar in focusing not on the ‘battle’ but living life to the full with cancer, as with any other disease.

And an addition – read this article by Piers Sellers, an ex-astronaut and current climate scientist, on how he intends to spend his remaining time having been diagnosed with stage 4 pancreatic cancer (answer: he’ll be back at work).

We have breast cancer units – so why not prostate cancer units?

Simon Crompton

Simon Crompton

There are few certainties in prostate cancer: intense debate continues to surround the benefits and drawbacks of screening, the relative merits of surgery, brachytherapy and radiotherapy and surgery, the right times for active surveillance and radical therapies. But through all the dialogue, a plain fact is now being acknowledged that casts a light on all aspects of diagnosis, treatment and continuing support. The patient’s own preferences, personality and circumstances have a central bearing on what the “right” decisions actually are.

Thanks to the efforts of patient organisations such as Europa Donna, this principle has already received widespread recognition in the most common cancer in women, breast cancer. A new European Parliament policy in 2003 prompted the growth of specialist breast units based around patient-centred multidisciplinary care teams. This, it has become clear, is the best way to take account of a wide range of individual needs and preferences.

The most common cancer in men, prostate cancer, is not yet widely benefitting from such a re-alignment. But that may change.

ESO promotes the specialist model

The specialist unit model is particularly well suited to prostate cancer and its convoluted decision-making. Not only does it provide specialist care and support at every stage – whether it be active surveillance, surgery and radiotherapy side effects or palliative care. It can also help patients recognise emotional needs that might not otherwise be addressed – and studies show that men are less likely than women to recognise the need for help.

These are all points that have been made with some force by the European School of Oncology’s Prostate Cancer Programme, led by Riccardo Valdagni, Scientific Director of the Division of Radiotherapy 1 and the Prostate Cancer Programme at the Fondazione IRCCS Istituto Nazionale dei Tumori, Milan. The programme developed the concept of prostate cancer units (PCUs), and in an influential article in the European Journal of Cancer in 2011 set out the concept and what was involved in terms of professional education and experience. The central principle is specialist care, multi professional care.

The idea is catching on. When I recently interviewed Per Anders Abrahamsson from the European Association of Urology, he said he supported PCUs, adding that non-prostate specialists had been treating the condition for too long. “We are definitely behind the concept of units. In many countries already, for example the UK, you now have to operate a certain number of cases a year and demonstrate follow-up and outcome to be allowed to carry out a procedure. I am convinced this is what will happen in all European countries.”

New paper sets the way forward

In August, the case for Europe-wide PCUs moves a step onwards with the publication of a new position paper from ESO in Critical Reviews in Oncology/Hematology, setting out the core criteria for defining the units in European countries. The criteria have been compiled by the PCU Initiative in Europe Task Force, established by ESO in 2012 to set standards for quality comprehensive prostate cancer care and designating care pathways in PCUs.

As Riccardo Valdagni says in the paper, there is a general cultural shift towards multiprofessional working which should win a consensus among the uro-oncologic community. But the influence of those who stand to benefit most could be crucial.

“The efforts of patient advocacy groups in increasing patients’ awareness about the importance of being treated and followed up in top quality centers are key elements for the success of the initiative,” he writes.

 

 

 

 

 

 

It’s official: Top 10 research priorities revealed for brain & spinal cord tumours

stu farrimond portrait cropped

Guest blogger – Stuart Farrimond, editor of gurumagazine.org, blogs at realdoctorstu.com

What research should be funded and who should get the money? It’s a fifteen billion euro question – and the answer you get depends on who you ask.

When I practiced as a doctor I believed that medical research should always focus on extending life and finding new treatments. After all, saving lives was why I entered the profession. Emotional, psychological and lifestyle factors are of trifling significance by comparison… or so I thought.

Eight years ago my perspective underwent a seismic shift after I was diagnosed with a glioma – a malignant brain tumour. Only then did I start to realise that well-intentioned research efforts can often miss the point. Treating the tumour alone may extend life, but as a cancer patient I know that life is more than added years. All too often, researchers can set their priorities based on what they consider important, what tickles their fancy, or simply based on with what they have experience in.

Two years ago, Dr Robin Grant, Consultant Neurologist, at the Edinburgh Centre for Neuro-Oncology, set out to find a broader answer to the question of what brain and spinal tumour research should be prioritised.

He gathered key leaders in primary central nervous system tumours, each with a wide network of influence in their speciality, to establish a James Lind Alliance ‘Priority Setting Partnership’. Over the next eighteen months, a collaboration formed between representatives of all those affected by brain and spinal cord tumours: patients, carers, major brain and spinal cord tumour charities and multidisciplinary professional organisations.

The ‘Top 10’ list of UK clinical research uncertainties in brain and spinal cord tumours was developed by the partnership, drawing on the expertise and experiences of all those directly affected by the conditions. Last week, the list was officially launched at the British Neuro-Oncological Society annual meeting, with a call for the assembled researchers and clinicians, and crucially research funders, to use it to inform and guide their own actions.

Here it is:


 

Top 10 priority research questions in brain and spinal cord tumours

1. Do lifestyle factors (e.g. sleep, stress, diet) influence tumour growth in people with a brain or spinal cord tumour?
2. What is the effect on prognosis of interval scanning to detect tumour recurrence, compared with scanning on symptomatic recurrence, in people with a brain tumour?
3. Does earlier diagnosis improve outcomes, compared to standard diagnosis times, in people with a brain or spinal cord tumour?
4. In second recurrence glioblastoma, what is the effect of further treatment on survival and quality of life, compared with best supportive care?
5. Does earlier referral to specialist palliative care services at diagnosis improve quality of life and survival in people with a brain or spinal cord tumours?
6. Do molecular subtyping techniques improve treatment selection, prediction and prognostication in people with a brain or spinal cord tumour?
7. What are the long-term physical and cognitive effects of surgery and/or radiotherapy when treating people with a brain or spinal cord tumour?
8. What is the effect of interventions to help carers cope with changes that occur in people with a brain or spinal cord tumour, compared with standard care?
9. What is the effect of additional strategies for managing fatigue, compared with standard care, in people with a brain or spinal cord tumour?
10. What is the effect of extent of resection on survival in people with a suspected glioma of the brain or spinal cord?


 

The lengths that the James Lind Alliance Priority Setting Partnership process goes to in defining ‘Top 10’ lists is staggering. In March 2014, around 200 people (patients, carers and health professionals) submitted more than 600 research questions on the treatment and care of brain and spinal cord tumours they felt needed urgent answers. These were refined, formatted and consolidated, weeding out questions that previous research has already answered. The resulting 44 questions were then put to another sample of over 200 people to rank in order of priority.

Last November, 29 ‘stakeholders’ used these results to hone in on the ‘Top 10’.This is the point at which I became involved. As both doctor and patient, my priorities were conflicted: the “patient” in me wanted research that could help me deal with symptoms; my “doctor head” however told me that physicians desperately need better treatment data.

These tensions were borne out through the diverse mix of professional and lay representatives. The experienced James Lind Alliance facilitators have the diplomacy skills that could broker peace in any conflict situation and, after six hours of carefully organised voting, ranking and discussions, we finally selected our top 10. Looking back now, it is difficult to imagine a fairer, more representative way to set cancer research priorities.

Thanks to Dr Grant and other volunteers and workers involved in the process, these priorities can now help ensure that future research efforts will improve the lives of cancer patients. After all, improving lives is why we enter our profession.

 

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’s state-of-the-art cancer centre: great if you can get there in time

esther

Guest blogger – Esther Nakkazi, freelance science journalist

On Thursday 21st May 2015, I was in Kampala to witness the opening of a US $10 million comprehensive regional cancer center – a product of almost 10 years of partnership between the Fred Hutchinson Cancer Research Center and the Uganda Cancer Institute (UCI). As a health journalist in a country where cancer tends to come a poor second to infectious diseases, this seemed like real progress, and a true north to south collaboration.

It was a colorful ceremony and the President of Uganda, Yoweri Museveni, and many gurus from the Fred Hutch in Seattle were present to open the 25,000-square-foot state-of-the-art-facility that can treat up to 20,000 patients a year. It has adult and pediatric outpatient clinics, a research clinic, laboratories, specimen repository, training center, conference rooms and a pharmacy.

Uganda has a substantial cancer burden, and six out of 10 of the most common cancers found here are caused by infectious diseases, also fuelled by HIV infection.

This UCI/Hutchinson Center Cancer Alliance will provide American and Ugandan physician–scientists with in-depth training in the treatment of infection-related malignancies.

Three hundred Ugandans and Americans have already been trained by Fred Hutch’s extensive medical training program in the treatment of infection-related cancers, including physicians, nurses, laboratory technicians, pharmacists, data specialists, and experts in regulatory affairs and fiscal management. The number of practicing oncologists in Uganda has increased twelvefold over recent years.

Jackson Orem, the director at the UCI, was filled with joy on this day ‒ we all were. For a facility that had him as the only oncologist in 2008, treating more than 10,000 patients a year, this is really good.

"The Ugandan Cancer Institute looked like this ever since it was established in 1973 (Photo by Andrea Stultiens)

“The Ugandan Cancer Institute looked like this ever since it was established in 1973 (Photo by Andrea Stultiens)

The New UCI-Fred Hutch Cancer Center, which opened on May 21st, 2015 (Photo by Esther Nakkazi)

The New UCI-Fred Hutch Cancer Center, which opened on May 21st, 2015 (Photo by Esther Nakkazi)

 

 

 

 

 

 

 

 

 

But hopefully, Ugandans do not think that, with this new facility, everything is now fine. To maximise impact, I think Uganda needs to use the strategy that made it a success in treating such cancers in the early 70s.

At the time, Prof. Charles Olweny was the director, the first at UCI, appointed in 1973. When I interviewed him three years ago for a special edition of The Health Digest on “Uganda’s Walk with Cancer” (http://www.hejnu.ug/sites/default/files/public/magazines/Cancer.pdf) he narrated how the team worked.

There were no mobile phones then, he said, but nevertheless the institute traced every patient within a month of not showing up.

Some staff knew every patient by name, where they came from, their treatment regimens, when they last came in and more. The nurses were thoroughly trained to mix the medicines because at the time treatment was done by a mixture of drugs. That freed up a lot of time for the doctors, and medical students were always available to step in.

Even if Uganda now has this modern facility, it may not be enough if patient families are not supported to come in, and awareness is not created. Cancer will still be defined as affecting the poor and the rich differently, yet it is the same disease and can be treated the same way.

In reality, the only difference between how the disease affects rich and poor is that for the poor it often is diagnosed either too late or not at all. With poor roads, limited follow up and poverty, many will still not be able to raise the cost of transport to the capital to the UCI. And then the state-of-the-art-centre may not make much difference.

We say “epidemic”, they say “breakthrough”: reframing the global cancer debate

anna portrait  picThe World Economic Forum, with its mission of “improving the state of the world through public–private cooperation” is where leading international figures from politics, business and civic society meet for informal discussions about the big global threats and opportunities of the day.

Getting cancer onto the Davos 2015 agenda was therefore a milestone, for which much credit should go to Franco Cavalli, a leading medical oncologist who chairs the World Oncology Forum and is a former president of the Union for International Cancer Control.

It should have been a great opportunity to engage global decision makers in discussions that have taken place within the cancer community about developing a response to the relentless global rise in cancer incidence, which is now the biggest cause of death along with cardiovascular disease.

However, while Davos did table sessions on cancer, they were not designed to discuss the strategic policy response the cancer community is calling for, and Cavalli, who had a seat at the table, came away with mixed feelings about what had been achieved.

Framing the debate

Last September, Cavalli was invited to participate in a pre-Davos panel on the topic Cancer: the Next Global Epidemic? to see if this would be suitable for inclusion on the full agenda. Alongside him were Chris Wild, Director of the WHO International Agency for Research on Cancer, Aaron Motsoaledi, the South African Health Minister, and Helmy Eltoukhy, a “technology pioneer” developing liquid cancer biopsies.

Early feedback was positive – cancer control seemed to have secured its place. However, when confirmation came at the end of December 2014, the focus had radically changed.

Any ambition for global action to support governments to sustainably expand access to early detection, treatment and care, had gone missing.

In its place were two sessions that focused on medical breakthroughs.

One of these, Cancer: Pathways to a Cure, framed the question as: “What breakthroughs in prevention and therapy offer a glimpse of a cancer-free future?

The other, titled A New Era in the Fight against Cancer, asked: “How will breakthroughs in specialized care and immunotherapy transform the future of cancer treatment?”

As Cavalli explains in the forthcoming issue of Cancer World, it proved hard to focus the discussion on what will make most difference to the 12 million people who develop cancer each year. Leading figures from research and the biomedical industry were keener to talk about their achievements, hopes and ambitions than to question the real-world impact of their work.

“It was a very difficult environment to present what we want to achieve,” said Cavalli.

There was an opportunity to discuss a possible policy response in a third session, the Globalization of Chronic Disease, but here the focus was entirely on promoting healthy environments and lifestyles, which doesn’t address the needs of people who develop cancers, many of which are not preventable.

Whose problem?

It is interesting to contrast the technological framing of the cancer sessions, with sessions on infectious diseases, which carried titles like “Confronting the Challenge of Catastrophic Outbreaks” and “Pandemics: Whose Problem?

The words indicate crisis, urgency, action, and a global responsibility – the responsibility world leaders previously accepted in setting up the Global Fund to Fight AIDS, Tuberculosis and Malaria, which has transformed access to information, affordable treatment and care.

As Cavalli argues in the forthcoming article, many leading political figures want a similar coordinated global initiative to tackle cancer, but their voices are not yet heard loudly enough.

His message to Davos? “We’ll be back!”