Cancer charter shows patients can demand their rights – and be heard

As a patient you can make your mark. Rights by Shutterstock

“Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane”. These words of Martin Luther King Jr are as insightful and pertinent today as when he first spoke them over 60 years ago. They are particularly relevant in the light of the recent report by Human Rights Watch 2015, which highlighted significant disparities in many health-related areas including access to pain relief, mental health services and cancer care.

In cancer, there is increasing evidence of inexcusable inequalities, while escalating costs are challenging our healthcare systems. Across Europe, there are significant disparities in access to cancer care that affect the health of our citizens. Access to standard chemotherapy in countries like Romania, for example, has been extremely challenging while lack of adequate radiotherapy facilities is making it increasingly difficult to deliver optimal patient care in a number of European countries.

The disparity does not only exist between separate countries – people in Northern Ireland, for example, do not have access to the same innovative cancer drugs as their counterparts in England, despite the fact that both jurisdictions are part of the UK and their citizens pay similar taxes.

These inequalities also impinge on the social and economic fabric of our society, as it is not just the direct cost of the treatments, but also indirect costs that are harder to measure such as reduced employment, increased access to social welfare and sick leave. Measuring these costs have given a true reflection of cancer’s economic burden and how providing optimal (and successful) cancer care can reduce these costs and thus benefit society as a whole.

Recognising these inequalities, a group of cancer patients, patient advocates and healthcare professionals came together to form the European Cancer Concord, a pan-European alliance whose stated aim is to identify cancer disparities and help effect change that will have a positive impact on the lives of cancer patients throughout Europe.

The concord produced a bill of rights for cancer patients – launched last year – as a tool to empower European citizens. It contains three articles – the right of every European citizen to:
1. Receive the most accurate information and be proactively involved in his/her own care.
2. Equal and timely access to appropriate specialised cancer care, underpinned by research and innovation.
3. Receive care in health systems that ensure improved outcomes, patient rehabilitation, improved quality of life and affordable cancer care.

Tonio Borg, the EU commissioner for health, who helped launch this patient charter on World Cancer Day captured the essence of the initiative:

I praise the very first right that the bill defends, the right for the patient to receive accurate information and be actively associated in their care. Information is key to enable the patient to play an active role in his or her treatment, rather than just being a passive recipient.

One year after the launch of the bill of rights in the European Parliament in Strasbourg, the fruits of our labour are starting to be realised. Patient groups throughout Europe are beginning to adapt some of the principles to their own national situations and implementing them has become a stated aspiration of several pan-European groups.

Equal and timely access to care

In Northern Ireland, the cancer charity Cancer Focus Northern Ireland has employed the bill of rights as we intended, as a catalyst for change, focusing in particular on Article 2. It was this charity that highlighted how a cancer patient in Belfast would not have access to the same treatment as a cancer patient in Bradford. It has also launched an equal access campaign, which culminated in the presentation of nearly 30,000 signatures to Jim Wells, the Northern Ireland health minister last autumn. This month he announced significant changes in the process to provide better access for patients and proposed the establishment of a Specialist Medicines Fund to help Northern Irish patients get access to potential life-saving or life extending medicines.

This goes to show that efforts and charters like our bill of rights can empower patients and help address some of the injustices that we experience in our health care systems today.

The right to affordable care

Our health care systems must deliver affordable cancer care. The economic burden of cancer in Europe is now approaching €150 billion annually. However, more than 60% of this “cost” is due to loss of productive life years for cancer patients as highlighted above. So rather than thinking of cost only as one related to treatment, it indicates the absolute need to underpin a healthcare system that can restore patients to “near normal” living.

In 2008, European health minsters came together and signed the Tallin Charter, pledging to invest in the improvement of European healthcare systems. However, the financial crash of 2008 and the severe economic downturn meant the charter has become a somewhat distant memory or aspiration.

But the principles that underpinned the Tallin Charter should not be ignored. Appropriate investment not only improves the health and well-being of the patient, but would also contribute to increased innovation and improved productivity, which would in turn drive economic growth and reduce pressure on future health and social welfare systems. Despite the continuing uncertainty about the European economy, rekindling our “health is wealth” agenda, as espoused in the patient’s charter and highlighted at last year’s World Health Economic Forum in Davos, does makes sense.

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