One World, One Standard
By Julie Duffin
November 2018 View more Humanitarian
It’s hard to fathom a world where treatments for people with epilepsy are unavailable—places where the social stigma of the disease is so strong that people are shunned, and even killed, for having a seizure. Those places do, unfortunately, exist in many developing countries. And while large pharmaceutical companies, collectively known as “Big Pharma,” focus on supplying medication to wealthy countries, they all but ignore the others. Fortunately, the Naperville-based ROW Foundation works to improve the lives of people with epilepsy and associated psychiatric disorders who live in these areas of the world.
Ken Koskela, acting president and director of global programs for ROW, is one of the 65 million people in the world who has been diagnosed with epilepsy. He considers himself lucky because he has access to medication that keeps him seizure-free—a standard that some Americans may take for granted. “Eighty percent of people with epilepsy live in low- and middle-income countries. In those underresourced areas, 75percent are left untreated. In African countries, that number jumps to 90 percent,” Koskela explains.
Koskela consulted for the ROW Foundation for a year before joining the nonprofit in May. Prior to that, he worked for another international nonprofit for 21 years and traveled extensively to underresourced countries. “I’ve taken about 87 trips to Africa and have traveled throughout Asia and South America. It never occurred to me what it would be like to have epilepsy living in one of those counties. When I started looking at some of the statics, it really began to hit home,” Koskela explains. A pivotal moment occurred last October during a meeting in Rwanda, when Koskela learned that one of the attendees’ colleagues was killed the night before by his own community members, simply for having epilepsy.
“People don’t really understand epilepsy. They think the person is possessed or that it’s contagious. People with epilepsy in these regions can’t keep jobs or go to school. There are too many accounts of people being chained to poles or getting killed,” Koskela states. “That firsthand account, put a name and a face to the stories I heard. It was a real motivator for me to get more involved in ROW.”
A Just Cause
The ROW Foundation was started by Scott Boyer in 2014. ROW, which stands for Rest of World, is a name Big Pharma uses to define areas not profitable enough to receive treatment options. After working in the pharmaceutical industry for over 30 years, Boyer wanted to help these regions. In order to finance his efforts, he launched OWP Pharmaceuticals, a company that manufactures and sells neurology and psychiatry medications. As shareholder of OWP, ROW is able to provide modern diagnostic tools such as EEG machines and training to areas in need, and ensure patients have access to a sustainable supply of medication. To find communities in need of assistance, ROW works closely with groups such as the International League Against Epilepsy. “I personally don’t know another organization like ROW that focuses on epilepsy and other associated psychiatric disorders,” Koskela explains. “Most health care organizations focus on only a handful of the more common illnesses.”
Koskela, a Naperville resident, earned a dual MBA in international business and finance from North Central College. In addition to his role at ROW, Koskela is a father of five and an amateur photographer who leads photo tours around the world. More information about the ROW Foundation can be found at rowpharma.org.