What was the defining moment that led you to this innovation?
Year after year, we receives emails and phone calls from people infected by hepatitis B, who are desparate for information and support. They can't tell their families for fear of being shunned, they might lose their jobs, they are isolated and alone with nowhere else to turn. The saddest of these stories are told by the pregnant women in China, who know that because they are infected with hepatitis B, they will be treated differently, as if they are shameful and tainted. They will give birth in designated hospitals for infected women, and their children will bear a red mark on their birth certificate that will affect their school entry. When Mei-Li came to visit us from China in 2010, she brought with her dozens of cards and letters from infected women asking us to please help them find a way to live with this infection and still remain active members of society, without shame. When Mei-Li shared her story, and told us that she was living separately from her toddler son, we knew that we had to help. This program stems directly out of that first visit, where we were surrounded by beautiful hand-made cards containings please for help, as a bright. That day, a caring young woman told us how devastated her life had become because of this virus, and people's reaction to it. It is time to act, for Mei-Li and the millions of other people in the world who feel the stigma of hepatitis B infection.
Tell us about the social innovator behind this idea.
My name is Chari Cohen, and I was working with the Hepatitis B Foundation for two years when my husband's mother was diagnosed with viral hepatitis and liver cancer. Finally, it all hit home to me. I had worked closely with people who had lost loved ones to this devastating disease, but I never dreamed it would personally affect my family. We faced a host of physicians, some knowledgeable about hepatitis, some not. There were scary appointments and technical medical terms. There were treatments that costed thousands of dollars each month. And, there were people who no longer visited with us because Mom had hepatitis. This was perhaps the most difficult part of all.
After a long and difficult illness, my beloved second mother died. I knew then that for as long as I could, I would dedicate my time to helping those with hepatitis. I want to make sure that they get the medical care that they need for their bodies, the support they need for their minds and hearts, and the unaffected, un-stigmatized love they need from their families and communities.
I am currently the Associate Director of Public Health for the Hepatitis B Foundation, in Doylestown, PA. I work with an incredible team of public health and medical researchers, community partners, and patients, to plan, implement and evaluate public health interventions and research projects. My specific research areas focuse on developing a community-based model to reduce barriers faced by chronically infected individuals in high-risk areas of the world, developing best practices for eliminating perinatal hepatitis B (mother to child transmission), and finding methods of preventing liver cancer. I am an executive member of the National Task Force on Hepatitis B: Focus on Asians and Pacific Islanders since 2005, and am actively involved in national advocacy efforts. I work with organizations around the U.S., and in China, to help them become HBV advocates and learn how to implement HBV-related projects using best practices. I received my Masters of Public Health from Temple University in 2001, and am currently enrolled in the Doctoral program at Drexel University School of Public Health, in Philadelphia. I am passionate about improving the health of HBV-infected and high-risk groups, and I truly believe that this project has the potential to make a grand, positive difference in the lives of millions of infected pregnant women.
How did you first hear about Changemakers?
Through another organization or company
If through another, please provide the name of the organization or company