NCDI Poverty Fellow Leads Discussion on Removing Cancer Stigma and Barriers to Care
/Fifty cancer patients, survivors, care providers, and NCD advocates from around the world came together on 10 February in observance of both World Cancer Day (4 February) and International Childhood Cancer Day (15 February) to share experiences, raise awareness, and discuss strategies to eradicate cancer stigma and barriers to care.
The webinar was organized and led by Voices of NCDI Poverty Advocacy Fellow Moses Echodu, a childhood cancer survivor from Uganda. Invited speakers included Dr. Anne Akiteng, Deputy Director of the Uganda Initiative for Integrated Management of Non-Communicable Diseases (UINCD) and Coordinator of the Uganda NCDI Poverty Commission, and Olodi Dennis, Uganda Cancer Society Programmes Officer.
The event featured a Q&A session as well as a roundtable discussion on the lived reality for people living with NCDs (PLWNCDs). Roundtable participants included Dr. Zipporah Ali, Executive Director of the Kenya Hospices & Palliative Care Association and Chair of the NCD Alliance-Kenya; Ancito Etienne, Partners in Health Trustee and a cancer survivor from Haiti; and Kwanele Asante-Shongwe, who has served as Chairperson of the South Africa Ministerial Advisory Committee on the Prevention and Control of Cancer.
“I took so long to share my childhood cancer story. I struggled with stigma. The children in my community didn’t want to play with me, and that affected me for a long time. I started sharing my story because not sharing affected my ability to live a full life. The onus is on us to create an environment of normalcy for new PLWNCDs where people understand that anyone can receive an NCD diagnosis, but that doesn’t change who they are, and you will not get the disease by associating with them.”
Participants were encouraged to contribute to the discussion by sharing personal experiences in breakout sessions that focused on NCD stigma and other topics such as identifying key priorities for more equitable access to cancer care. Echodu pointed out that stigma is especially prevalent in low- and lower-middle income countries because the unavailability of affordable and accessible NCD treatment for the world’s poorest has created a false belief that those with NCDs will die. Stigma itself can become a barrier to care, as Echodu recalled people in his community telling his mother that she should not pursue cancer treatment for him after his diagnosis. The discussion called on PLWNCDs to share their stories to break down stigma and build a movement to demand access to treatment for all.
According to the findings of the Lancet NCDI Poverty Commission, childhood cancer patients living in extreme poverty lose over 20 more years of healthy life than those in high-income countries. The first step to closing the cancer care gap is acknowledging and addressing inequities in cancer diagnosis and treatment.