Azra Hoosen | ah@radioislam.co.za
2 February 2024 | 17:30 CAT
3 min read

In anticipation of World Cancer Day, the National Cancer Registry, a department within the National Institute of Communicable Diseases (NICD), has partnered with the advocacy group ‘Living with Cancer South Africa’ to introduce the first-ever patient-led cancer registry.

This registry allows patients to provide the agency with information about their diagnosis and aims to provide a more accurate representation of South Africa’s cancer landscape and improve it.

Dr Mazvita Muchengeti from the NICD provided clarification on why Cancer is categorised under the National Institute for Communicable Diseases despite not being a communicable disease. “Cancer is under the same institute as infectious diseases because we do not have a non-communicable disease institute in South Africa; since the NICD already had the necessary platforms for tracking and monitoring disease statistics, it made strategic sense to include cancer under their umbrella in 2016. Resources are shared at the institute, with ten centres for the NICD and one for the Cancer registry,” she said.

Belinda Wagner, the creator of the patient-led registry from Living with Cancer, explained that during her journey of being diagnosed with a rare form of cancer and searching for information, she realised that she could give back to the cancer community. This led to her starting the registry to support the need for more information. “The partnerships are crucial so that we can collectively gather data to make a difference. Being patient-led empowers them to take action against the situation they are facing,” she said.

Wagner underscored the isolating nature of the cancer journey, emphasizing that “Living with Cancer” is a platform designed to bring together individuals undergoing similar experiences. “The aim is to create a supportive space where people can share their stories and exchange insights,” she added.

Muchengeti highlighted prevalent cancers in women, including breast, cervical, uterus, colorectal, and non-Hodgkin lymphoma.

“For men, the top 5 are prostate, lung, colorectal, non-Hodgkin lymphoma, and melanoma. Despite the rarity of childhood cancer, WHO prioritises it, despite high survival rates in developed countries; however, only 20% of South African children survive, raising concerns about the significant disparity,” she said.

Wagner reiterated the importance of the patient-led registry, as it empowers cancer patients to actively participate in closing the cancer surveillance gap and improving the accuracy of cancer statistics. “Reliable cancer stats will help the government understand the true burden of cancer and estimate the resources required for cancer care. This will also aid in formulating policies to reduce cancer. Therefore, all cancer patients and everyone in the cancer community are encouraged to contribute to the data to make a real difference,” she added.

World Cancer Day is an event that takes place every year on February 4^th, led by the Union for International Cancer Control (UICC), and aims to raise awareness and understanding of cancer.

The current theme, ‘Close the care gap,’ focuses on addressing disparities in cancer care.

This global event calls for action to ensure equitable access to essential cancer services, tackling barriers related to age, ethnicity, gender, socioeconomic status, or location.

In 2024, the main goal is to engage world leaders, urging them to adopt strategies to rectify inequities and allocate resources, with the ultimate aim of preventing and treating cancers effectively.

LISTEN to the full interview with Ml Junaid Kharsany, Dr Mazvita Muchengeti from the NICD, and Belinda Wagner from Living with Cancer, here.