University of Hawai‘i Cancer Center Connection

The first cancer registry in the Pacific was established in Papua New Guinea in1958.^1,2 Seven years later a second cancer registry was established in Fiji.³ In the North Pacific, successive German, Japanese, and American bureaucracies administering the islands of Micronesia had encouraged the collection of vast amounts of health data but the analysis, dissemination and intelligent use of the data by administrators was sorely lacking.⁴ In 1977 the Secretariat for the Pacific Community (SPC - formerly the South Pacific Commission) developed a standard cancer reporting system in cooperation with the International Agency for Research on Cancer (IARC) using IARC-developed CanReg software. In 1989 and again in 1991 courses were held at the SPC headquarters in Noumea to train cancer registrars from French-speaking countries of the Pacific and in 1998 a course was held at the same venue for cancer registrars from 13 English-speaking Pacific countries and territories.⁵ Many of the trainees returned home to successfully establish cancer registries in their respective jurisdictions - unfortunately in some cases lack of funding and local support allowed nascent cancer registries to die soon after their birth.

Despite these early efforts, cancer registration remained a mixed picture. The origins of the Guam Cancer Registry, while perhaps not typical, are illustrative of the problems encountered in establishing cancer registries in the region. The position of Territorial Epidemiologist within the Government of Guam was established in 1972 and although the official job description for this position did not limit the scope of work to the control of communicable diseases, on Guam, as in many other Pacific island countries and territories, emphasis was initially directed at controlling outbreaks of infectious diseases such as measles, dengue fever, cholera, influenza, etc. Over the years, however, questions about the impact of chronic diseases on Guam from both the public and medical professionals became more frequent. Dissatisfied with a lack of information regarding the impact of cancer on Guam, in 1998 the late Dr. Eduardo Cruz, then a physician member of the 24th Guam Legislature, introduced legislation to establish the Guam Cancer Registry (GCR) as an unfunded mandate of the Department of Public Health and Social Services (DPH&SS). Passed by the legislature as Bill 24–198, this legislation became effective with the signature of Governor Carl T. C. Gutierrez on May 6, 1998. After public hearings were held to create regulations governing operation of the GCR, they were submitted to the legislature for review and went into effect on June 15, 1999.

Although prospective collection of reports of new cases of cancer on Guam began in 1998, additional data on earlier cancer cases was gathered by reviewing death certificate records in the Office of Vital Statistics dating back to 1970, the year that the standardized national death certificate was adopted for use on Guam. The format for the new death certificate record included information on contributing causes of death and “other significant conditions,” thus providing a more complete record of the medical state of deceased persons than was available on earlier death certificates. For purposes of cancer incidence registration, cases were added to the registry if cancer was specified in any section of the death certificate. Data on cancer cases diagnosed before 1998 was also collected by reviewing files of the American Cancer Society, Guam Chapter.

The GCR was initially operated as a collateral duty of Guam's Territorial Epidemiologist. As the result of efforts initiated by Dr. Carl-Wilhelm Vogel of the University of Hawaii Cancer Center, a partnership was created between the University of Hawaii Cancer Center and the University of Guam. This partnership received funding from the National Cancer Institute's (NCI) Center to Reduce Cancer Health Disparities through the Minority Institution/Cancer Center Partnership program, starting in 2003, and currently in its 10th year of support. The partnership grant from the NCI included support for the operation of the Guam Cancer Registry, a joint venture of the University of Guam and the Guam DPH&SS. The GCR registry was able to hire a full-time data collection specialist for the first time. This greatly improved the ability of the GCR to collect more accurate and complete information regarding Guam cancer cases. In recognition of its progress, in 2006 the GCR was awarded full-member status in the North American Association of Central Cancer Registries (NAACCR). In February, 2007, a second data collection specialist was hired. In 2009, the GCR published its first comprehensive report “Guam Cancer Facts & Figures 2003 – 2007”, updated in 2011. A significant step towards achieving long-term sustainability of the GCR occurred in 2010 when the Guam Legislature passed Public Law 30–80 which increased the tobacco tax by $2 per pack and provided for a dedicated funding stream to support the operation of the GCR.

In the early 2000s, Dr. Neal Palafox of the University of Hawaii obtained support from the NCI to conduct a needs assessment in the United States Associated Pacific Island Territories (USAPI: American Samoa, the Republic of the Marshall Islands, the Federated States of Micronesia, the Commonwealth of the Mariana Islands, Guam, and the Republic of Belau) to identify and prioritize local and regional cancer prevention and control needs, and to help establish cancer prevention and control programs in each jurisdiction.^6,7

One of the outcomes of this activity was the creation of the Cancer Council of the Pacific Islands (CCPI), as well as the recognition that if an accurate assessment of the state of cancer in the USAPI was to be achieved, individual cancer registries in each jurisdiction would need to be established, including financial support, guidance, and training. Only through such a collaborative effort could the collection of more uniform and comprehensive cancer incidence and mortality data be undertaken.^8,9 Plans were developed by Dr. Palafox to establish a Pacific Regional Central Cancer Registry, housed at the GCR and serving all the USAPI. A five-year grant was received from the Centers for Disease Control and Prevention (CDC), recently renewed for another five-year period. Thus was born the Pacific Regional Central Cancer Registry (PRCCR). Initially focusing on training, policy development, legislation, and infrastructure challenges, cancer cases from the USAPI cancer registries from 2007 onward were collected at the regional PRCCR office located on the University of Guam campus.¹⁰

It is hoped that these landmark developments will usher in a new era when the collection of regional cancer data will not be an end in itself but an agent for evaluation of programs and the impetus for improvements in cancer control and care in the region.

For more information on the University of Hawai‘i Cancer Center/University of Guam Partnership, the University of Guam Cancer Research Center, and the Guam Cancer Registry, including a link to the “Guam Cancer Facts & Figures 2003 – 2007,” please visit: http://www.guamcancerresearch.org. Information on the Pacific Regional Central Cancer Registry and related Pacific cancer programs may be accessed at: http://www.pacificcancer.org, and information on the University of Hawai‘i Cancer Center and the Hawai‘i Tumor Registry may be accessed at: http://www.uhcancercenter.org.