Former patient drives cancer community
BRYANSTON – In its opening launch week (4 to 11 February) the registry has more than 50 patients sign up.
Living With Cancer support group founder, Belinda Wagner celebrates a win for cancer patients everywhere.
Wagner, together with a team of information technology company Altron Karabina, have launched South Africa’s first patient-led cancer registry. The need for the registry came about when Wagner was first diagnosed with a rare cancer, angiosarcoma in 2016 which put her on the hunt for additional information and support.
This is when Wagner realised that both of these important commodities were completely lacking not only in the country at large, but her community in Bryanston as well. For Wagner, one of the most important characteristics of a support group is accessibility, which is why the launch of this cancer registry was so important.
“As someone who has gone through the journey myself, I understand how difficult it was with my rare cancer and how difficult it was to find information and get the correct combination of medication – it was scary,” she said.
This in-patient cancer registry hopes to provide additional and realistic information to patients from the patients themselves. “Currently, the National Cancer Registry only reports on the number of cancer patients diagnosed in laboratories and hospitals across the country. A patient-led registry will now include those who may not be covered by medical insurance and are not able to utilise the private sector.”
In its opening launch week (4 to 11 February) the registry had more than 50 patients sign up. “I always knew that this [registry] would be really important but I had people saying to me, ‘Belinda you don’t understand, this can really provide guidance to the government on what cancer looks like in South African, the protocols and medications’,” it is quite emotional.”
With the support of the many individuals and groups in the cancer community, including the National Cancer Registry, Wagner hopes to reach and assist many more people in making better-informed decisions about their healthcare and well-being.
For more information, visit www.livingwithcancersa.co.za
Related articles:
https://www.citizen.co.za/sandton-chronicle/244576/living-with-cancer-and-hope/
https://www.citizen.co.za/sandton-chronicle/247838/iamandiwill-this-world-cancer-day/
