“We know what is best for us,” said Anu Gomanju, a person living with rheumatic heart disease in Nepal. “That’s why our needs and voices need to be prioritized.”
Gomanju made that statement in late September, during the online launch event for Voices for PEN-Plus. Sponsored by the NCDI Poverty Network, Voices for PEN-Plus brings together people living with severe, chronic, noncommunicable conditions to advocate for PEN-Plus implementation in sub-Saharan Africa and South Asia.
Gomanju is one of eight Voices for PEN-Plus advocates from low-income countries seeking to build solidarity across diseases. Each advocate lives with a severe, chronic noncommunicable condition—including type 1 diabetes, sickle cell disease, and rheumatic heart disease—and is from a PEN-Plus country. Riva Greenberg, the author of three books on flourishing with type 1 diabetes, serves as an advocacy mentor to the group.
Although the advocates live in disparate countries, they have faced common challenges, including difficulty accessing medicine, stigmatization, and a lack of education about their condition.
“You all represent a voice, a story, and a hope for a better tomorrow,” Dr. Apoorva Gomber, associate advocacy director for the NCDI Poverty Network, told the group during the launch event. “There’s no better way to advocate for health systems that meet our needs than as an organized coalition. When you learn from others living with noncommunicable conditions, you become an advocate not only for your disease but also for theirs. PEN-Plus serves multiple disease communities, and we support each other too.”
The launch event introduced the Voices for PEN-Plus advocates to the Network’s current advocacy goals and tactics. The group will meet monthly over the next six months to collaborate on advocacy initiatives that include:
· discussing and informing the strategy and direction of the NCDI Poverty Network;
· drafting a Language Matters document that guides positive communication with people living with severe, chronic NCDs;
· creating social media campaigns to promote awareness of severe, chronic NCDs;
· developing a call to action to encourage U.S. legislators to act on NCDs;
· building storytelling capacity with other organizers to create a framework for action;
· supporting virtual and in-person representation at global health events and conferences;
· collaborating and providing feedback to each other on individual advocacy projects; and
· creating an advocacy handbook and resource hub.
“I’m looking forward to hearing the group’s insights,” said Dr. Gene Bukhman, co-chair of the Network. “The voices of those with lived experiences are paramount to moving our mission forward.”
Meet the Voices for PEN-Plus Advocates
Tinotenda Dzikiti lives with type 1 diabetes in Zimbabwe. He graduated cum laude from Bindura University of Science Education with a bachelor of commerce honors degree in financial intelligence. He is a certified diabetes educator and a global advocate for T1International. He serves as the co-chair of the Membership Committee and co-lead for the special interest group “Diabetes in Africa and Limited Resource Settings” for the International Society for Pediatric and Adolescent Diabetes (ISPAD). He is a Young Leader in Diabetes and Africa Representative-Elect for the International Diabetes Federation and an ambassador for the Zimbabwe Diabetes Association.
Moses Echodu, a childhood cancer survivor from Kampala, Uganda, serves as program director of the Uganda Child Cancer Foundation. While serving as a Voices of NCDI Poverty Advocacy Fellow, Echodu spearheaded outreach activities with youth in Uganda to build awareness for cancer and other severe NCDs through printed educational materials, radio shows, and screening campaigns. He has spent the past eight years building cancer awareness among young people and advocating for policies to improve access to cancer services for young people through his 3C program, which engages youth in secondary schools.
Anu Gomanju is a person living with rheumatic heart disease, an NCD advocate, and a registered public health professional. She holds a master of public health in global health from Thammasat University. During her tenure as a Voices of NCDI Poverty Advocacy Fellow, Gomanju used social media to establish an advocacy group and network for people living with rheumatic heart disease in Nepal, the first of its kind in the region. She continues to work closely with the Nepal NCDI Poverty Commission and to provide insight as a person living with rheumatic heart disease.
Emmanuel Kisembo, a type 1 diabetes advocate from Kampala, Uganda, is a special initiatives programs manager at Sonia Nabeta Foundation, which seeks to alleviate the hefty cost of treatment for low-income children with type 1 diabetes in Africa. Kisembo is also the author of Embracing the Pricks: The Journey to Acceptance Through the Lens of an African Type 1 Diabetes Warrior.
Edith Mukantwari is a public health activist, a nutritionist, and a diabetes educator from Uganda. She is president of the Africa Diabetes Alliance, an organization in Uganda that seeks to encourage diabetes education and bridge the information gap for people living with diabetes.
Ruth Ngwaro was born with a congenital heart defect and has had four open heart surgeries since the age of three. Her most recent operation was on World Heart Day (September 29) 2020. At the age of six, she became an ambassador for children like her, reciting poems at events to increase awareness about congenital heart disease and heart health. In Kenya, her country of birth, she became known for her continuous advocacy work at nonprofit organizations, resulting in partnerships with local governments and the private sector as well as supporting people living with heart disease. She holds a degree in microbiology and lives in Boston, where she works as a personal care assistant.
Eunice Owino is a sickle cell disease advocate and founder of the Sickle Cell Uhuru Trust, an organization working to build awareness about sickle cell disease, teach management of the disease, and emphasize the importance of care for people living with sickle cell disease in Kenya and around the world. Her work as an NCDI Poverty Advocacy Fellow focused on building awareness of sickle cell disease in Kenya and other areas of the world where the disease is prevalent. She is the regional coordinator for the African Congress on Sickle Cell Disease and serves on the Board of Directors for the Sickle Cell Federation of Kenya. She also represents Kenya in the East Africa Sickle Cell Alliance.
Arafa Said was diagnosed with sickle cell disease at eight months old. Since then, she has been fighting through all life challenges with this inherited condition. For the past decade, she has devoted herself to improving the lives of her fellow Tanzanians with sickle cell and other chronic diseases. She founded the Sickle Cell Disease Patients Community of Tanzania, the first sickle cell advocacy organization in Tanzania. She is also the Tanzanian representative for the East African Sickle Cell Alliance. She provides social support, public advocacy, and education for people living with sickle cell disease nationwide through these organizations. She also aims to help all people living with sickle cell disease obtain health insurance and to ensure stable access to quality healthcare in Tanzania.
Riva Greenberg, a leading global advocate for people living with type 1 diabetes, is devoted to helping people with diabetes live an exceptional life, not despite having diabetes but because of it. A highly requested speaker and trainer, Greenberg shares an innovative treatment approach with health professionals called the Flourishing Treatment Approach. She is a trusted advisor to diabetes businesses, organizations, and pharmaceutical companies. She was the patient-expert for QuantiaMD’s “Ask the Patient” series; co-created a webinar series on Preventing Diabetes for Wellcoaches; and is a certified Wellcoaches health coach and certified teacher of the Stanford Diabetes Self-Management program. She is the author of three books: Diabetes Do’s & How-To’s, 50 Diabetes Myths That Can Ruin Your Life and the 50 Diabetes Truths That Can Save It, and The ABC’s of Loving Yourself With Diabetes. Greenberg was featured in “My Sweet Life: Successful Women With Diabetes.” She was a contributor to the Huffington Post and blogs on her website, DiabetesStories.com. She received the International Diabetes Federation Lecture Award for her education and advocacy in 2015.