Florence Tangka, PhD, Health Economist,
Centers for Disease Control and Prevention

Cost of Cancer Registration in Limited Resource Settings

Cancer is a leading cause of illness and deaths worldwide. In 2012 approximately 14.1 million new cancer cases were diagnosed, 8.2 million people died from cancer, and 32.5 million people were living with cancer. More than 50% of the world’s cancer cases and 65% of cancer deaths occur in limited-resource settings, and more than 48% of cancer survivors live in these areas. In the next two decades, new cancer cases are projected to increase by 70% worldwide, mostly in limited-resource settings.

High-quality population-based cancer surveillance data are needed to describe cancer burden, patterns, and outcomes in order to inform cancer prevention, detection and control activities, and evaluate interventions so that the best approaches to ease burden and suffering are adopted.  There are large inequalities in the existence, coverage, and quality of cancer surveillance systems across the world, with limited information available in limited-resource settings. For example, the percentage of the population covered by cancer registries ranges from nearly 100% in North America to less than 10% in Asia, Central America, and South America, and roughly 2% in Africa (See Figure 1).

Only one in five countries in limited-resource settings have the data needed to inform cancer control plans. To address this gap, the International Agency for Research on Cancer (IARC), a specialized agency of World Health Organization (WHO), has initiated the Global Initiative for Cancer Registry Development (GICR) to establish regional resource centers to provide technical support and guidance for the development and improvement of population-based cancer registries around the world.

IARC has developed a framework for planning and implementing population-based cancer registries. However, lack of information about how much registries cost is a major barrier to planning, implementing, and evaluating cancer registration. Yet, investing in high quality surveillance data is crucial so countries can select the best interventions that are both cost effective and most improve health.

CDC, RTI International and others partner developed a tool and used it to collect standardized cost and resource data from 11 registries in Colombia, India, Kenya, Barbados, and Uganda.  Findings from this study have been published as a series of manuscripts in Cancer Epidemiology.  The study found that partnerships are crucial to developing and sustaining registries. While registries can be expensive, they are less expensive in LMICs and the population level cost is low (less than $0.01 to $0.22 per person). Efficient data collection processes and organizations can cut costs further.

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Information on the cost of establishing, improving, maintaining, and expanding cancer registries is essential to ensure adequate funding is available for cancer registration activities. Accurate and reliable costing data is also critical in supporting country-level and regional efforts to plan, implement and evaluate investments in cancer registration.

The abstract below is from the comparative paper published in the Monograph titled “Resource requirements for cancer registration in areas with limited resources: Analysis of cost data from four low- and middle-income countries.”

Resource requirements for cancer registration in areas with limited resources: Analysis of cost data from four low- and middle-income countries (The abstract below is from The International Journal of Cancer Epidemiology, Detection and Prevention)

Abstract

Paulo Pinheiro, MD, MSc, PhD, Associate Professor Epidemiology, University of Nevada Las Vegas (NAACCR Committee Member)

Significant disparities between Blacks, or Americans of African descent, and the majority non-Hispanic white population for cancer incidence, survival and mortality are well-documented. For research purposes, Blacks have been typically aggregated as one large population group, as NAACCR does not collect specific information on descent for non-Hispanic Blacks. However, our colleagues at the University of Nevada Las Vegas ​(UNLV) ​used mortality data from Florida to examine heterogeneity within the Black population, finding surprising differences between US-born Blacks, ​and Jamaicans and Haitians​ (Afro-Caribbean populations) residing in Florida​.

US-born Blacks had exceedingly high mortality rates, nearly double that of their Caribbean counterparts, whose rates were similar to or lower than non-Hispanic whites for many cancers. Haitians in Florida had the lowest mortality for all cancers combined and for the greatest causes of cancer mortality: lung, colorectal, breast, and prostate; Jamaican rates were intermediate between Haitian and US-born Black rates. Perhaps most surprising is that even for infection-related cancers, typically ascribed to immigrant populations, US-born Black men had higher mortality for liver and stomach cancer, and US-born Black women had higher cervical cancer mortality than Jamaicans or Haitians.​ Also, the patterns among Jamaicans and Haitians in the US vary according to cancer site, and these patterns are not always compatible with the widely known “healthy immigrant effect”.​

These results assume great importance for aggregated rates in states such as New York and Florida with significant diversity in the Black population, as the inclusion of these relatively healthier populations has the effect of pulling down the rates and underestimating the true mortality burden for US-born Blacks, shown here to be even worse than previously documented. This work also highlights the importance of better understanding the role of acculturation among immigrant groups in cancer risk.

Read Full Article (Abstract below)

Abstract