Greek legend holds that when the courtier Damocles extravagantly praised the happiness of Dionysius, ruler of Syracuse, the sovereign responded by seating Damocles at a banquet with a sword hung by a single hair above his head to illustrate the precarious nature of such happiness. Similarly, the spectre of cancer hangs over some cancer survivors.

There are currently over 100,000 cancer survivors in Ireland.¹ While some patients develop greater confidence and zest for life, others struggle with anxiety and depression, with the period immediately following completion of treatment believed to be the most challenging. As well as coping with the side-effects of treatment such as fatigue and hair loss, there may be loss of support from family and friends. Loss of regular contact with healthcare teams, coupled with fears of recurrence and uncertainty about the future, may lead to further stress and isolation. Economic limitations faced by individuals, including limitations in work and daily activities, translate into a broader societal burden, with productivity losses accounting for approximately one quarter of the total cost of cancer.²

Inequalities

In a speech to the Medical Committee for Human Rights in 1966, Dr Martin Luther King Jr stated: “Of all forms of inequality, injustice in health care is the most shocking and inhumane.” According to the World Health Organization (WHO), there is currently a 36-year gap in life expectancy between countries. A child born in Malawi has a life expectancy of 47 years, whereas a child born in Japan can live as long as 83 years.

The US, Europe and Japan combined contain 39% of the world’s cancer burden, yet account for 95% of all anti-cancer drug sales in the world. The US alone accounts for 61% of anti-cancer drug sales, yet has only 18% of all global cancer cases. Within countries, health outcomes differ significantly based on differences in gender, ethnicity, social status or income. African-American men in the US are the most likely, among all other ethnic groups in the US to develop cancer, at a rate of 598.5 per 100,000.

Treatment costs

As the field of oncology continues to undergo significant therapeutic breakthroughs, the economic burden of cancer therapy continues to rise. In the US the average cancer drug price for approximately one year of therapy or total treatment duration has increased from being less than $10,000 before 2000, to $30,000-$50,000 by 2005. In 2012, 12 of the 13 new drugs approved for cancer were priced above $100,000 per year of therapy.

A recent study published by The Lancet Oncology reported huge variations in the price of new anti-cancer drugs in high income countries of up to 388%.³ The high cost of cancer drug development and the lack of a clear threshold of clinical benefit required for approval by the Food and Drug Administration (FDA) are often cited as reasons for the high prices of drugs. The seriousness of a cancer diagnosis also means that society is more willing to ignore the lack of cost-effectiveness in using a new drug that promises only a modest incremental benefit compared to its antecedent.

Limited resources in developing countries means that many patients receive no treatment, and those who do, often receive available or affordable rather than optimal cancer treatments. A study presented at the ESMO ASIA 2015 Congress reported that disadvantaged patients had an 80% higher risk of death within 12 months following diagnosis compared to patients without economic difficulties at baseline.

Even among developed countries and affluent citizens, the costs of cancer care are such that illness can lead to irrecoverable financial stress, as highlighted in a recent interview where US vice president Joe Biden admitted to considering selling his house to help pay for his son’s medical expenses.

Psychological burden

During discussions about the burden of cancer and cancer care, the emotional and psychological cost incurred is often overlooked. A postal survey carried out in the UK in 2011 indicated that cultural differences can influence adjustment to a cancer diagnosis.⁴ The survey conducted among British and Japanese-British people revealed that the latter group experienced greater social isolation following a cancer diagnosis than their British counterparts. A Pakistani study looking at patients who had life-changing surgeries as a result of their cancers reported that patients with stomas feel stigmatised in society, and poor economic conditions leading to insufficient stoma bags often lead people, particularly women, to stop working outside the home.⁵ A survey carried out among Muslims in Turkey reported that Muslims with stomas often feel isolated from cultural and religious events, particularly during the month of Ramadan.⁶

Looking for solutions

Establishing national, evidence-based guidelines that examine socioeconomic data and quality of life data may provide greater transparency on cost-effectiveness of cancer drugs. In 2011, ASCO published its ground-breaking report Accelerating Progress Against Cancer, whereby it made three recommendations – establishing a new approach to therapeutic development; designing smarter and faster clinical trials; harnessing information technology – to achieve cost savings without compromising patient care.⁷ In India, a full year of treatment with sorafenib costs US $69,000, approximately 41 times the per capita income in India. In 2012, India granted a compulsory license authorising the manufacture and sale of a generic version of sorafenib that brought the price of the drug down 97%, allowing the drug to become far more widely available, and setting a precedent for patented drugs to become more widely used in developing countries.⁸

A broad consensus which emerged from the World Oncology Forum in Lugano in October 2012 was that current models for developing new therapies are not working; they are delivering too little benefit at too great a cost. Clinical trials in oncology have the highest failure rate compared with other therapeutic areas. Studies in the last decade indicate that an alarming number of scientific papers cannot be reliably reproduced by different groups of researchers. Though not widely acknowledged, the economic impact is extensive, with irreproducible research currently estimated to cost $28 billion per year.⁹ Replication studies conducted by pharmaceutical companies can cost between $500,000 to $2 million in investment. Rising pressure on research budgets has led a number of high-impact journals to adopt stricter guidelines aimed at boosting reproducibility.

The Universal Declaration of Human Rights states: “Everyone has a right to a standard of living adequate for the health and wellbeing of himself and his family.” Cancer patients are no exception. The WHO predicts that by 2030, 22 million men, women and children will be diagnosed with cancer annually, and 13 million will die of the disease.¹⁰ The World Cancer Declaration, launched in 2006, called on governments and international organisations to increase the political priority given to cancer, and take immediate steps to substantially reduce the global cancer burden by 2020.¹¹ A series of eleven key targets were published that would slow down and eventually eliminate cancer as a major threat to future generations.

Despite the ambitious nature of some of these targets, previous national and international campaigns have taught us that partial responses to complex health issues are unlikely to be successful. What is required is for cancer to experience an ‘AIDS moment’ – to generate the same sense of urgency that forced the AIDS epidemic on to the agenda of G8 summits, to mobilise a similar drive and collaborative effort that provided some of the poorest communities in the world with access to antiretroviral drugs. Establishing a single international platform similar to the World Economic Forum, to interact with governments, NGOs and health agencies, and involving philanthropic foundations in the manufacture and delivery of anti-cancer agents, can potentially revolutionise the economics of cancer care.

The way forward in Ireland

Within Ireland, a National Cancer Control Programme (NCCP)-led forum involving oncologists, general practitioners and pharmaceutical companies has the best chance of succeeding in reducing cancer costs. National guidelines allowing increased access to cheaper generic versions of drugs, as well as providing comparative analysis of treatment options for a given cancer will enable oncologists and patients to choose the most cost-effective options by balancing risks and benefits, while preserving the balance between physician autonomy and costs incurred. Globally, as with most health challenges, only a truly comprehensive effort combining public education including stigma reduction, early diagnosis and equal access to effective treatment and follow up, has a chance of succeeding.

Cancer does not discriminate based on ethnicity or socioeconomic status. Governments, world leaders, independent research foundations and charities, international health agencies and oncology professionals have a combined responsibility to build the momentum and drive needed to prevent a potential humanitarian crisis by changing the economics of cancer care, which will benefit virtually every patient and family in any country in the world – from the vice president of the world’s largest economy to the average citizen of one of the world’s poorest countries. As challenging as any measures are likely to be, inaction will undeniably be far more malignant.

In the words of Thomas Edison: “When you have exhausted all possibilities, remember this – you haven’t.”

References

1. Cancer in Ireland 2013: Annual report of the National Cancer Registry. NCRI, Cork, Aug 2013
2. American Cancer Society. Cancer facts and figures 2010. ACS Inc, Georgia, USA, 2010
3. Vogler S, Vitry A, Babar Z. Cancer drugs in 16 European countries, Australia, and New Zealand: a cross-country price comparison study. Lancet Oncol 2016; 17(1): 39-47
4. Saunders CL, Abel GA, Lyratzopoulos G. What explains worse patient experience in London? Evidence from secondary analysis of the Cancer Patient Experience Survey. BMJ Open 2014; 4(1): e004039
5. Hong-li C, Xiao-Chun W, Jiang-Bin W, et al. Quality of life in patients with breast cancer and their rehabilitation needs. Pak J Med Sci 2014; 30(1): 126–130
6. Celasin H, Karakoyun S, Yilmaz S, et al. Quality of life measures in Islamic rectal carcinoma patients receiving counselling. Colorectal Disease 2011; 13: 170-175
7. Kris MG, Meropol NJ, Winer EP (exec eds). Accelerating progress against cancer: ASCO’s blueprint for transforming clinical and translational cancer research. ASCO, Virginia, USA, 2011
8. Roxanne Nelson. Why Are Drug Costs So High in the United States. Medscape Medical News (Oncology) 2014; http://www.medscape.com/viewarticle/835182
9. Begley CG, Ellis LM. Drug development: Raise standards for preclinical cancer research. Nature 2012; 483: 531-533 
10. WHO cancer facts. Fact sheet N°297. Updated February 2015; www.who.int/mediacentre/factsheets/fs297/en
11. World Cancer Declaration 2013. The Union for international Cancer Control. www.uicc.org/world-cancer-declaration