‘You shall not pass’: The cost of poor access to cancer treatment

On 7 June 2016, the IMS Institute for Healthcare Informatics released a study that made international headlines, finding that the global oncology drug market is expected to reach $150-billion by 2020. This is an increase from $107-billion in 2015 – registering annual growth rate of 7.5%-10.5% until 2020.

At first glance, the news appears worst for the US, which registered the highest drug prices. A Reuters analysis reported that the lowest prices were in India and South Africa, while for generics, median prices were highest in the US, at $654, and lowest in South Africa, at $120 – still not small change, at the current exchange rate ($120 comes to just under R1,800). These were not adjusted as a percentage of wealth; with prices calculated according to the aforementioned parameters and adjusted to the cost of living, cancer drugs were in fact least affordable in India and China.

In South Africa, where the Gini Coefficient (which measures inequality) hovers between 0.66 and 0.67, leaving it described as of the most “consistently unequal societies in the world” – the calculations are complex, and affordability depends on multiple factors: the financial position of the individual as well as the case itself.

There is little doubt that South Africa is taking strain under the rising costs of cancer care, as well as a rising incidence of cancer itself. In May 2016, Quartz Africa reported that cancer prevalence on the African continent was increasing precisely as radiotherapy facilities were falling apart; and that “more than 20 countries on the continent don’t have even a single facility with working radiotherapy machines, even though about 63% of cancer patients need radiation”.

In 2012, medical journal Lancet published a study that predicted South Africa could see a 78% increase in cancer cases by 2030, with a 75% increase expected globally. The total incidence of all new cancer-cases from 12.7-million in 2008 to 22.2-million by 2030.

“Already cancer is one of the world’s leading causes of death and has the greatest economic impact in the form of premature death and disability. A recent study conducted by Livestrong and the American Cancer Society estimated the total global economic impact of premature death and disability resulting from cancer was $895-billion in 2008. The figure represents 1.5% of the world’s gross domestic product (GDP). The economic impact of a 75% global increase, and 78% local increase, could well be devastating,” Professor Jacques Snyman, now CEO of ISIMO Health, told Health24 at the time.

By 2014, Dr Vikash Sewram, director of Stellenbosch University’s African Cancer Institute, warned that South Africa would be facing a fresh wave of cancer cases if action were not taken urgently. Ironically, he said, it was precisely the increase in life expectancy that meant more patients were at risk of developing noncommunicable or lifestyle-related diseases, including cancer.

But on closer inspection it appears drug prices are only the cherry on top. Dr Ernst Marais, Chief Operating Officer of ISIMO, says a more pressing problem is gaining access to care in the first place.

ISIMO is an umbrella organisation that oversees the Independent Clinical Oncology Network (ICON), which liaises between funders, clinicians and patients in an attempt to drive access to more effective – and cost-effective – cancer care to patients. Marais says resources are limited even in private care, and in the state sector, resources are particularly strained.

“Prices of new molecules are determined for the developed nations – the US and Europe, mostly,” he tells Daily Maverick. “Even so, cost and affordability of treatments in these countries are also a major concern. In South Africa, 8.4-million people have medical insurance and have access to at least prescribed minimum benefits when it comes to cancer care. Resources are fairly easily accessible, and much work is done by ICON in this sector to ensure cost-effective high quality care. Even so, access to newer molecules (targeted therapies and immunotherapy) and high-tech radiotherapy remains limited due to cost.

What this means for the layperson is that, in line with the abovementioned 20 African countries that do not even have radiotherapy facilities, the idea of South Africa worrying about the cost of advanced cancer treatment is a little like a five-year-old piggy-banker fretting over the stock market. We’re just not there yet.

The further difficulty lies in that South Africa’s population is just shy of 53-million, leaving a vast number of people uninsured and dependent on stretched state resources. “In the state sector, access remains a major concern,” Marais adds. “There are fewer resources – oncologists, radiotherapy facilities, etc – available to the uninsured population than there are to the insured population.” And the insured population is a fraction of the size.

ICON Clinical Oncology Advisor Dr David Eedes quantifies the problem: “The important point is that, for the majority of South Africans, the access to early diagnosis, and then to appropriate affordable treatment basic treatment – surgery, radiotherapy and standard chemotherapy drugs – is very poor. Affordability of expensive chemotherapy drugs for the average South African, therefore, is not a burning issue. The average patient does not even have access to very affordable, basic (i.e. cheap) cancer treatment.

The uncomfortable truth, to paraphrase Eedes, is that in South Africa we still need to learn to walk before we can run. There is no real, reliable route to cancer “prevention” or a magic bullet. Rather, our best hope lies in early detection, and in putting systems in place that will support better access across the board.

Another route to cutting the cost of cancer for patients, funders and the country overall is by cutting out unnecessary treatments. Daily Maverick recently reported on a research breakthrough that could enable earlier detection of six common cancer types in future, as well as potentially being used in a routine early detection testing tool for breast cancer.

A further discussion point – which also features on ICON’s radar – is palliative care, which has made headlines frequently in recent months. According to the World Health Organisation (WHO) an estimated 40-million people need palliative care each year, yet only 14% receive it. A key factor here is that many who are terminally ill wish to die at home; it is not uncommon, however, both in South Africa and abroad, for terminally ill patients to receive unnecessary treatments that not only cause them suffering but also will not save their lives.

A key problem, says Eedes, is that medical aid firms are frequently reluctant to fund palliative care, even when it is in the best interests of the patient, because the cost is misunderstood.

“The cost of palliative care can be managed by provision of good home-based palliation. The expense medical schemes are seeing is because patients spend days, weeks and months dying in high-care, high-cost hospitals as they, the schemes, do not adequately fund home-based care in the main,” he explains.

“Fortunately, this is being recognised by certain schemes, and programmes to fund the management of patients at home are being rolled out. ICON is currently negotiating with schemes about widening this access for insured patients.”

Once again, however, the uninsured population is doing what it can with what it can: hospice organisations generally have little state support.

The discussion of avoiding unnecessary treatments is an important one, because even where one is measuring cost on a case-by-case basis, the price of cancer is eye-watering. Marais tells Daily Maverick that breast cancer, because of its high incidence, carries the biggest price ticket in South Africa at the moment.

“Costs are determined by the incidence of a specific cancer as well as the treatment used to treat that type of cancer,” he says. “The treatment cost for a specific case can vary between a few thousand rand to R800,000 per case. Certain haematological (blood) cancers, melanomas (skin) and renal (kidney) cancers (to name a few) are very expensive to treat – sometimes upward of R1-million.” Independent Online reported in May 2016 that in 2015 skin cancer alone cost the healthcare system R90-million.

That said, early diagnosis will also require some investment of resources.

“Cancer prevention is a complex issue and not many cancers are truly preventable,” says Eedes. “Even in high income countries prevention has not made any major impact on cancer incidence and outcomes. Much more important locally would be early diagnosis by means of education and access to well-planned screening programmes. But this, without a good infrastructure to manage these early detected cancers, is problematic.”

Prevention should also not be confused with screening, adds Marais, which is one more element of early detection and should be used responsibly so as not to waste resources or create panic with unnecessary testing.

So what does it boil down to? Eedes says the greatest challenge isn’t about the cost of cancer drugs at all. “For South Africa as a whole we need improved infrastructures to better detect and treat patients with cancer; an increase in the training of personnel – primary care nurses, oncological surgeons and cancer professionals to drive this, and a move away from the focus on drug costs and more on the basics of good cancer care and proper medical care generally,” he says.

For him and Marais, the struggle remains to make cancer care accessible first and foremost.

“Without an integrated approach to healthcare in general and cancer care specifically, a large number of patients in the country will die unnecessarily,” he says. “The rapidly disintegrating state oncology infrastructure countrywide is of major concern.

“ICON, which represents and supports a countrywide oncology network of treatment facilities and personnel (with about 80% of all cancer specialists in SA) has shown its willingness to work alongside government in assisting with the oncology aspect of this issue. While we work mainly in the private sector, we believe we have the experience, expertise and energy to assist the state sector.” A luta continua. DM

Photo: Tobeka Zuma hands over food parcels to Sipokazi Samente 26 ahead of the concert to be held at Walter Sisulu University in Umthatha to awareness on breast cancer. 17 Oct 2015, (Photo: GCIS)

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