Voices Advocate Promotes PEN-Plus at World Health Summit
In Berlin earlier this month, Emmanuella Selasi Hormenoo, a 24-year-old living with type 1 diabetes and a Voices for PEN-Plus advocate, represented people with lived experience on two World Health Summit panels.
When it comes to advocating for health equity and greater access to care for people living with severe noncommunicable diseases, Emmanuella Selasi Hormenoo doesn’t miss an opportunity.
Undaunted by sharing stages with such global health leaders as Dr. Mohamed Janabi, director of the WHO African Region, Hormenoo spoke on two panels at the World Health Summit in Berlin earlier this month. A member of the NCDI Poverty Network’s Voices for PEN-Plus team, which promotes centering people with lived experience in policy discussions for NCD care, Hormenoo spoke frankly about how the PEN-Plus package of clinical services has improved care for NCDs such as type 1 diabetes, sickle cell disease, and childhood-onset heart disease in her native Ghana.
“It’s been a very pragmatic solution on what integrated care on NCDs should look like, especially on the district levels, where access is very difficult for individuals in remote areas,” Hormenoo said in a panel moderated by Katie Dain, chief executive officer of the NCD Alliance. “PEN-Plus is able to deal with that, where we see the pragmatic impact of reduced morbidity and mortality, and the strengthening of health care systems through the training of local and primary health care professionals.”
Hormenoo spoke on two panels: “From Commitment to Action: Advancing Sustainable Solutions for NCDs,” and “Promoting Childhood Health and Well-Being to Prevent and Manage NCDs.” On the first, she shared the stage with Dr. Janabi; Jon Fairest, head of the Global Health Unit at Sanofi; and Gerald Lazer, a senior portfolio manager at KfW Development Bank in Germany. The second panel included Jeremy Farrar, an assistant director-general for WHO; Mauro Brero, senior nutrition advisor for UNICEF; and Jo Jewell, director of social responsibility at Novo Nordisk.
At 24 years old, Hormenoo was the youngest speaker on either panel, by at least a decade.
Unfazed, she drew power and conviction from her personal story. In the panel on childhood health, Hormenoo described how she and her family consulted four doctors in their quest for a diagnosis. Only after falling into a two-month coma did she learn that she had type 1 diabetes.
“I was a very angry person at that point, because I couldn’t believe I had to go through all that to find simple information,” Hormenoo said. She added that a family physician, who later became a mentor, helped her “direct that anger into advocacy, to help other people in similar situations.”
Hormenoo now serves as secretary-general of Diabetes Youth Care, which provides resources, education, and support for young people living in Ghana.
“We deal with patients, with caregivers, and with health care facilities,” Hormenoo said. “With patients, we have mentorship programs, monthly support meetings, [and] online programs where we give daily and weekly awareness issues, not only on diabetes, but on other noncommunicable diseases and on infectious diseases. We educate caregivers as well, and we have annual consults that are free for people living with diabetes.”
Diabetes Youth Care also educates youth in schools and conducts screening events around Ghana, in addition to advocating for better distribution of insulin and diabetes supplies across the country.
On the World Health Summit’s “Commitment to Action” panel, Hormenoo spoke about how the political declaration from September’s United Nations High-Level Meeting on NCDs and Mental Health showed progress by acknowledging the role of civil society and people with lived experience.
“The recognition in of itself is a validation of the importance of the inclusion of civil societies within the entire healthcare system,” said Hormenoo, one of more than a dozen Voices for PEN-Plus advocates who are increasingly speaking in international forums. “What this means is that [the declaration] actually has opened a way for us to be actively involved in policy-making and monitoring. I would give the example of the PEN-Plus model, which has seen pragmatic impact and has actually helped, because of the fact that there is an integrated approach and the inclusion of civil societies within the model itself.”