The battle against cancer may really start with a battle against stigma.
The Cayman Islands Cancer Registry has identified stigma as a major obstacle of cancer surveillance locally and a contributing factor to the lack of data and registries in the Caribbean.
The Cayman Islands Cancer Registry now has 443 registrants, and people registered at a 20% higher clip in 2018 than they did in 2017. May is Cancer Research Month, and one of the goals is to raise global awareness of the disease and open channels for public discussion and sharing of information.
“I think sometimes people in the Cayman Islands choose not to join a registry because cancer is something very personal and they still don’t feel comfortable talking about it with others,” said Cayman Islands Cancer Registrar Amanda Nicholson as part of an official press release. “Stigma around this disease hinders the process of monitoring cancer trends, advancing cancer treatments, conducting research and improving cancer prevention and screening programmes. In order to combat the stigma surrounding cancer, we must first break the cycle of misinformation and fear. We must be able to have informed, intelligent conversations about how this disease impacts our population.”
There is presently a dearth of information related to cancer trends in the Caribbean.
A recent research study co-authored by Health Services Authority pathologist Dr. Shravana Jyoti indicates that only 12 of 30 Caribbean nations have cancer registries. Four of those 12 nations provide high-quality incidence data, information that covers just 14.4% of the population.
The study, which is titled ‘Advancing Cancer Control Through Research and Cancer Registry Collaborations in the Caribbean’, states that, “Few national registries exist in the Caribbean, resulting in limited cancer statistics being available for the region. Therefore, estimates are frequently based on the extrapolation of mortality data submitted to the World Health Organization.”
Last June, the Caribbean Public Health Agency and the International Agency for Research on Cancer officially launched the first IARC Caribbean Regional Hub for Cancer Registration.
Jamaica launched its own population-based national cancer registry last December. That registry will collect data on all new cancer cases and cover the entire population of the island. Over time, the cancer registrars hope for more complete participation and data that covers every Caribbean nation.
“Cancer registration is limited in the Caribbean, and the Caribbean Cancer Registry Hub will seek to strengthen cancer surveillance by building capacity for cancer registration in the region,” said Dr. James Hospedales, executive director of CARPHA.
“The availability of cancer surveillance data is critical to enable evidence-informed decision-making in support of wider national and regional cancer control and prevention programmes.”
In 2015, Cayman legislators drafted a Cancer Registry Law that would make it mandatory for health professionals to report cancers and brain tumours to the registry. The bill did not pass.
There were only around 250 people on the registry in February 2015 when the Cayman Compass reported about the Cancer Registry Law, and the past three years have seen the registry nearly double.
Slowly, people are becoming more willing to share their information in the interest of science.
“We find that a lot of people are more willing to help than they are reluctant,” said Catherine Ebanks, programme coordinator for the Cayman Islands Cancer Society.
“A lot of people worry that their information is not kept confidential and we try to remind them that for the purposes of statistics, a code is generated for their file and they are given an 8-digit identifier. This seems to put a lot of people at ease and encourages participation in the registry.”