Five Policy Levers To Meet The Value Challenge In Cancer Care

In 2010 over thirteen million people developed cancer, and the worldwide costs of cancer care were conservatively estimated at $290 billion. Five years on, it is difficult to say with certainty how much more is being spent on cancer care, but the direction of travel is known. The total cost for delivering cancer care is expected to rise steadily around the world in tandem with increasing incidence rates, especially in low- and middle-income countries. Spending on cancer care is projected to reach $458 billion by 2030. ¹

As health care leaders grapple with cost containment imperatives, cost transparency and value for money in cancer care have gained unprecedented cachet. Clinicians at Memorial Sloan Kettering Cancer Center, for example, inaugurated a new era of cost-consciousness in their oncology practice with a 2012 New York Times op-ed piece titled, “In Cancer Care, Cost Matters.” ²

That cost mattered would have already been evident to many in the United States. Purchasers of health care have long struggled to contain reimbursement to providers that maximize charges, consequently shifting more of the burden to patients. This burden is particularly damaging in the case of cancer, given the high prices for therapies: Patients with cancer in the United States have been shown to be over twice as likely to declare bankruptcy as patients with other diseases. ³ In the public sphere, however, there had been little discussion of value in cancer care prior to 2012.

Today there is a growing body of evidence suggesting that higher spending on cancer at the population level may not be having a reliably positive impact on outcomes. Although international comparisons show substantial variations in overall outcomes, those variations do not seem to be generally explained by variations in spending. The effectiveness of high cancer spending in improving survival and reducing mortality remains questionable. ^4–6

Even within health systems, substantial variations in patterns of care mean that spending may not be directed to the best-quality therapies. ^7,8 As technological progress in cancer care has accelerated, inequalities in outcomes have widened. ⁹ Furthermore, new drugs always command very high prices and sometimes provide only incremental benefit. ¹⁰

In the United States, the average monthly cost for new cancer drugs rose from $1,553 in 1999 to $7,112 in 2009, while legislation prevented Medicare (and some private payers) from taking measures to control price growth. ¹¹ This is not an American idiosyncrasy: In Australia, where more robust cost-effectiveness evaluations are required by the government, the price growth of cancer drugs was 7.6 percent per year in 2002–12—more than double the pace for all other drugs during the same period (2.8 percent per year). ¹²

Once the latest diagnostic and therapeutic technologies become available to the oncology community, overdiagnosis, overtreatment, and treatment that produces only minimal benefit are widely suspected. ^13,14 However, the root of the issue is the fact that clinicians, payers, and policy makers seem not to understand the care being provided well enough to make confident decisions about value. ¹⁵

How can we improve the value of cancer care, if continuing to increase spending is neither feasible nor necessarily effective? An international expert group convened by Qatar Foundation examined this question and presented its findings at the World Innovation Summit for Health 2015 in Doha. The group suggested that the future of cancer care presents a “value challenge” to health systems. ¹⁶ The value challenge is this: how to expand access to high-quality, patient-centered cancer care in a world where more people with higher expectations develop cancer more often and use ever more expensive treatments at a time of decreasing public money to spend per person. We focus in this article on the implications of the challenge for policy makers.

Public Policy For Cancer Care

Over the latter half of the twentieth century, cancer care attained a privileged policy position in developed countries. National cancer strategies gave cancer a visibility that other noncommunicable diseases lacked. Cancer “czars” with strong political backing were installed to implement those strategies, and publicly funded cancer research institutes with plentiful resources have advanced collective knowledge.

For example, in 2014 in the United States, more research funding from the National Institutes of Health went toward cancer ($5.4 billion) than Alzheimer’s disease, diabetes, heart disease, and mental health combined ($5.0 billion). ¹⁷ And in the same year in Australia, cancer research—one of the National Health and Medical Research Council’s nine National Health Priority Areas—received the most funding of the areas, AUS$181 million. This amount was 45 percent more than the funding for cardiovascular disease, five times more than that for dementia, and more than double that for each of the other six priority areas. ¹⁸

The unity of purpose and urgency behind cancer policy has contributed to tangible gains in measures of success in cancer care. Lung cancer incidence rates have declined steadily through prevention efforts. ¹⁹ Chronic myelogenous leukemia has gone from a fatal to a curable disease, thanks to advanced new therapies. The population of cancer survivors is at an all-time high. ²⁰

Precision medicine augurs even greater improvements. The use of targeted therapies (often concurrently) promises to improve the effectiveness of cancer care, and funds are being rapidly shifted in this direction: The share of worldwide oncology drug spending devoted to targeted therapies grew from 11 percent in 2003 to 46 percent in 2013. ²¹ However, we see reason for concern that policy makers, who are in a position to channel this progress in cancer care delivery toward greater value, are struggling to keep pace with rapid innovation and its ballooning costs.

Cracks are appearing around the edges of the traditional policy bulwarks. Many governments seem underprepared to make value-based determinations about precision cancer therapies in the approvals process. ²² The UK National Health Service (NHS) circumvented its traditional technology evaluation process to create a parallel, less stringent funding mechanism exclusively for cancer drugs, and the budget for this Cancer Drugs Fund has grown at over 30 percent per year from 2013 to 2015. ^23,24 In Japan, overlapping schemes known as “compassionate use” and “patient-requested cure” risk undermining established marketing approval mechanisms for new cancer drugs. ²⁵ Cancer policy debates are shot through with calls for (and accusations of) cancer exceptionalism, a term that refers to the quest for even more funding for cancer care. ²⁶

In the remainder of this article we discuss an evolutionary policy approach that could engender progress in meeting the value challenge and sustain affordable cancer care without resorting to cancer exceptionalism. We explore a number of questions that will challenge policy makers. What should the new objectives for cancer policy be? What barriers to policy development are likely to slow reform efforts? What levers are available to effect change?

What Should The New Objectives For Cancer Policy Be?

Having a single clear goal—to cure cancer—has motivated public policy and legions of researchers, clinicians, and funders. Like space exploration, curing cancer has become in some ways synonymous with scientific endeavor. Such a single-minded approach, however, cannot prevail against an increasingly atomized set of conditions.

Cancer care is changing dramatically: Treatment regimens are fragmenting to the point of personalization. Assessing options and making trade-offs among different options for care will be more important, but also more difficult, than ever before. Thus, the imperative to deliver high-quality care using precision techniques also compels a better, more systematic approach to collecting, organizing, and using information.

Real-world evidence should be pervasive and reliable, with patients and clinicians learning from the lived experiences of patients with similar cancers. Documenting and sharing the results of one patient’s treatment with the oncology community will give the next patient better confidence in making trade-offs between the risks and potential benefits of therapies. In this way the snowball of information will grow, as long as the conditions are right for data collection and dissemination.

A worthy next-generation project for policy makers concerned with cancer—and one that would support health systems in meeting the value challenge—is promoting transparency and accountability: transparency of both spending and outcomes, and accountability for matching them more closely to each other.

With better information about costs and benefits, patients and clinicians could come together to make better treatment plans. Regulators and payers could judge new technologies on their merits in vivo and reward innovation accordingly. Economists would be able to better answer questions about spending, and policy makers could tie investment more closely to return.

What Are The Barriers?

Cancer care is well known as an emotive policy issue: Its stakeholders are particularly sensitive to change and threats to their interests. The collective will to meet the value challenge will have to negotiate the obstacles to policy reform stemming from disparate agendas. Over and above the traditional competition for a bigger slice of the pie among industry, payers, and providers, cancer policy makers must also negotiate with vocal and influential advocacy groups, for whom a bigger pie of resources always represents an improvement. In this contentious environment, we have highlighted two barriers to building momentum for policy change that emanate from these particular dynamics.

Political Will For Reform In Cancer Spending

As a matter of public policy, growth in spending on cancer care may be concerning, but politically it is a winner. Studies of public opinion in the United States, ²⁷ the United Kingdom, ²⁸ and Poland and Austria ²⁹ all corroborate the intuitive appeal to politicians of promising more funding to support cancer research and treatment. Being seen as tough on cancer remains politically expedient in the same way as appearing to be tough on crime. Media reports can be quick to criticize any perceived government stinginess when it comes to cancer. ³⁰

Yet there is evidence from the United Kingdom to suggest that voters support treating cancer with the same health economic rationale as other diseases when they are educated about the trade-offs and provided with impartial facts about cost and benefit. ³¹ On the assumption that such information could be made available and understandable, the political narrative in cancer care could shift.

Financial Risk From Transparency Along The Value Chain

In most developed countries, cancer care is a multibillion-dollar industry in which producers can maintain a competitive advantage by keeping information about costs and benefits guarded. Negotiations between private insurers and providers, particularly in the United States, are predicated on secrecy regarding the prices of services. ³² For decades clinical study results regarding treatment effectiveness have been published only selectively, to protect commercial or reputational interests. ³³ While there is every reason to believe that better information will lead to better care, there is no reason to believe that everyone will profit as a result.

What Levers For Policy Change Are Available?

There is considerable inertia in cancer care policy that favors the conventional logic of investing large sums to cure cancer. Yet we believe that policy makers have an opportunity to encourage change. In this section we describe five levers—ways of influencing the cancer care system—that could unlock value in cancer care through transparency and accountability.

We believe that governments could act helpfully in five principal roles, detailed below: to define common standards, become an information broker, serve as a strategic purchaser, engage in deliberative democracy, and foster community education.

Governments Define Common Standards

Governments have historically played an important role in defining standards to help facilitate commerce in health care, from cost-effectiveness thresholds to meaningful-use requirements for health information technology. In cancer care, where data quality and compatibility will be paramount, there is a need for new rules for value-based decision making.

For example, the American Society of Clinical Oncology has developed a standard for “meaningful outcome” improvement to provide a demand signal to industry to help focus its research and development efforts. ³⁴ In so doing the society is attempting to define a standard for the adoption of a new drug into clinical practice. In the four patient populations the society considered, the meaningful outcome improvement standard translated into a minimum 25 percent improvement in baseline median overall survival using the current standard of care. The long process of arriving at a consensus percentage for other cancer types, led by clinicians, deserves buy-in from policy makers—from supporting early efforts with funding and attention to seriously considering alterations to regulatory processes that would amplify the demand signal to the market.

There are many similar examples, as many salient questions are interdisciplinary and contentious in nature, and the convening power of a central body, such as a government, will be required to achieve meaningful consensus. For example, what qualifies as nonresponse in a cancer patient to a drug subject to refund? By what means and in what format ought clinical trial data be made available? How should the boundaries of spending on cancer care be drawn and tracked on an ongoing basis?

Governments As Information Brokers

Through cancer registries, many of which are hosted or convened by governments, the systematic tracking of cancer outcomes has contributed to incredible advances in understanding the epidemiology of cancer. Even greater potential exists in systematically tracking the costs and benefits of therapies in a real-world setting.

Governments can take unilateral action to promote transparency, as the Centers for Medicare and Medicaid Services did in the United States by releasing provider payment data. ³⁵ In the United Kingdom, the Systemic Anti-Cancer Therapy Dataset allows comparisons of treatment delivery, a step toward better understanding of resource allocation in the country’s health economy. ³⁶ Catalogues of cancer-specific activity such as the Systemic Anti-Cancer Therapy Dataset may be an accessible next step for governments accustomed to collecting cancer registry submissions from providers within a geographic area.

Governments can also empower other actors by making information available in a trusted manner. In New Zealand the HealthTracker database established by the Ministry of Health fuels independent systemwide monitoring and critical evaluation of cost in cancer. ^37,38 Without the benefit of comprehensive data in impartial resources such as HealthTracker, robust multilateral debate remains impossible in most health economies. Once these resources are in place within countries, they should be networked internationally to enable efficient targeted research and development on a global scale.

Governments As Strategic Purchasers

In publicly funded health systems, governments have the ability to introduce new models of financing to encourage better value-based decision making. ³⁹ In addition to establishing the legal and regulatory basis for these new models, governments can also serve as the first mover in testing transparency and accountability in purchasing in oncology.

Although administrative hurdles have proved difficult to overcome, programs in place in the United Kingdom and Italy that collect refunds from pharmaceutical companies when patients do not benefit from bortezomib, cetuximab, and nilotinib (all expensive cancer therapies), provide a useful template. ⁴⁰ Public payers should direct spending toward the best buys along the entire cancer pathway and seek long-term returns on investment, especially in prevention (which could also lead to lower morbidity and spending in other noncommunicable diseases) and screening.

Governments Engage In Deliberative Democracy

Cancer care policy is caught in a complex web of public interests and motivations, which sometimes creates contradictions and confusion. In this context, deliberative democracy approaches might provide insights into the order of priorities and aid communication with the electorate.

This has been done in New Zealand regarding cancer screening policy ⁴¹ and in British Columbia, Canada, regarding the allocation of cancer treatment resources. ⁴² In the New Zealand case, a citizens’ jury heard testimony from experts with opposing viewpoints on implementing free mammography screening for women ages 40–44 and voted against a program to fund the screening. In less developed countries, with even more constrained resources, governments could take a consultative approach to expanding services according to community priorities. ¹³

Transparency and accountability can be expressed in a dialogue between those who determine policy and those who are affected by it. While this approach could seem idealistic to some, it nonetheless offers a structure for public engagement on a deeper level than has been historically attempted with issues in cancer care. To break the impasse between impossible public expectations and finite public resources, new approaches are needed.

Governments As Community Educators

Finally, governments can help generate knowledge about high-value cancer care through collaborative networks. The online community PatientsLikeMe, a well-known example of such a knowledge network, recently partnered with Genentech to conduct research on oncology therapy experience. ⁴³ Other networks could pursue analogous research on high-value care delivery. Grassroots participation in transparency and accountability, in which policy makers play a supportive role through funding, legal protection, or arms-length sponsorship, will be essential to overcome political barriers to policy change.

Conclusion

Facing a sharp increase in cancer incidence and costs, governments worldwide have several tools at their disposal to help sustain high-quality cancer care. While meeting the value challenge we set out at the WISH 2015 conference ¹⁶ is not a task for governments alone—instead, it is one for the entire health care sector—we have identified some ways in which public policy can help engender the right sort of environment for cancer care to flourish.

In many countries, early efforts to use one or more of the five policy levers we have suggested are already under way. Our hope in summarizing the levers here is that policy makers worldwide will look inward and outward to find viable ways of adapting these common themes to their local contexts and, in turn, disseminate their findings more broadly.

ACKNOWLEDGMENTS

Some of the material in this article was previously presented at the World Innovation Summit for Health, an initiative of Qatar Foundation, in Doha, Qatar, February 17, 2015. Funding was provided by Qatar Foundation.

NOTES

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