December 14, 2017
Guest contribution by Marc Beishon.
The world’s leading metastatic breast cancer (MBC) experts and advocates came together in Lisbon in November at the Advanced Breast Cancer 4th ESO-ESMO International Consensus Conference to welcome the ABC Alliance Global Charter (see below for its 10 goals).* The product of a new organisation, the ABC Global Alliance, an ESO (European School of Oncology) initiative chaired by Dr Fatima Cardoso, the charter is the first detailed mission plan to improve the care of the world’s growing number of women and some men living with advanced breast cancer.
The charter is the result of a movement that initially struggled to get the needs of patients with mostly incurable breast cancer taken seriously. This has not only been by healthcare systems – which have tended to steer resources away from those with a poor outlook in cancer – but also the mainstream breast cancer advocacy organisations, which have largely focused on ‘pink’ campaigns and early stage, curable disease.
Pioneers of the advocacy movement – such as Musa Mayer, who wrote about the unmet needs of women with ABC (Advanced Breast Cancer) back in the 1990s – were in Lisbon to hear how far initiatives and science behind the goals of the charter have progressed. But the situation still makes sobering reading.
The median survival of patients with ABC has improved only slightly in the past 15 years, and is still between 2 and 3 years. Patients in many countries lack access to both new and even established drugs and treatments such as radiotherapy, including in some European countries, particularly in Eastern Europe.
Multidisciplinary breast units – the optimal places where the standard of care for ABC should be delivered – are also far from universal. And women continue to face barriers in obtaining support, both at clinic and in society at large, such as in the workplace, and through continuing stigma about having an incurable illness.
But a number of planks have been laid to influence policymakers and other decision makers in the healthcare field, and these are built on in the 10 goals of the global charter.
The needs of the ABC patient population – which is growing – are now well researched, published and highlighted at meetings by advocates and oncologists round the world, and indeed also by major pharmaceutical companies. Breast cancer advocacy organisations are supporting ABC patients far better than before, and several MBC-only groups and an MBC alliance have been formed in the US; in Europe the Pan-European coalition for national breast cancer advocacy, Europa Donna, held its first MBC conference this year.
And if progress in new treatments has been painfully slow, there has been a major breakthrough in the past few years: the launch and update of the ABC international consensus guidelines at the biannual Lisbon conference, an ESO (European School of Oncology) initiative, chaired by Dr Fatima Cardoso. These guidelines, which are ESO and ESMO (European Society for Medical Oncology), guidelines and endorsed by many other societies (such as European Society of Breast Cancer Specialists, Federacion Latinoamericana de Mastologia, Senologic International Society) have for the first time established a standard for multidisciplinary care for advanced breast cancer. It was not very long ago that even some breast cancer oncologists were saying that ABC was too diverse in treatments options and patient types to make such consensus possible. That view has largely been overturned and the guideline document is a cornerstone for the ABC Alliance Global Charter as it sets out for policymakers an international benchmark for the current standard of care.
That is a key strategy for the ABC Global Alliance – national advocacy becomes much more powerful when policymakers see that other countries are serving their breast cancer patients better than their own. The 10 goals give broad scope for national alliances of advocates, oncologists, other health professionals, and industry to prioritise which goals are most important for their country, which will differ most obviously between the developed and developing world.
In a first meeting at Lisbon, ABC Global Alliance delegates gave early indications of the most common priorities. The goal of doubling median survival by 2025 figured highly, not surprisingly, as this should be a core goal of any cancer control initiative (and it is notable that the World Health Organization has this year added the word ‘control’ to its cancer prevention programme, recognising that managing cancer as a chronic condition is a critical policy aim). To increase survival, patients need access to latest therapies, and new therapies must be developed, and it is also critical to have multidisciplinary breast cancer units in place.
And in first place delegates voted for the goal concerning multidisciplinary care in breast units specifically, as this isn’t just about treating cancer but providing palliative and supportive treatment, and psychosocial help for patients, families and carers.
Since the late 1990s there has been a call for European policymakers to ensure all women and men with breast cancer have access to such units – and the year 2016 had been set by the European Parliament as a deadline. It has not been met for all, but the role of advocacy from groups such as Europa Donna has been crucial to getting breast cancer resolutions passed at EU level. In 2015 the EP submitted a written declaration that patients with MBC should have access to specialist breast units; meanwhile a European MBC policy roadmap has just been launched, and the European Commission Initiative on Breast Cancer is making progress with quality assurance for breast cancer services.
But even in the EU, probably the leading region for services, there are other major gaps in MBC related issues, such as the epidemiology of advanced disease (almost no country worldwide knows how many people are living with MBC), validated quality of life measures, consistent communications training for professionals, and sufficient societal welfare support and workplace rights protection.
The ABC Global Alliance, working through its charter, will marshal the arguments, evidence and examples to help activists solve these problems in their countries.
Marc Beishon is a health, science and technology journalist who has written many articles for Cancer World magazine, as well as conducting many interviews with leading oncologists, other health professionals and patient advocates on both organisational and scientific topics, from regulation to rare cancers to survivorship and shared decision-making. He collaborates on many ESO projects such as the ABC Global Alliance.
The ABC Global Alliance, established by the European School of Oncology, is a multi-stakeholder platform for all those interested in collaborating on common projects relating to advanced breast cancer (ABC) around the world. The Alliance is made up of people and organisations who are committed to develop, promote and support tangible improvements that will ultimately create awareness and actions that will improve and extend the lives of patients living with ABC worldwide.
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