Mara Delgado was diagnosed with sickle cell disease when she was just 14. An inherited blood disorder with no cure, it causes anemia, extreme pain and frequent infections. For a teen, it was confusing. Scary. An illness unknown and misunderstood by many. Doctors said the girl would not live past 30.
Today, at 47, Delgado says she’s lucky to be alive.
Sickle cell disease is the most common blood disorder there is. Healthy blood cells are round. But people with the disease have some red blood cells that instead look like the C-shaped farm tool called a sickle. When these sickle-shaped blood cells travel through small, round blood cells, they get caught and disrupt blood flow.
“It’s been really scary,” she said.
Delgado was an invited guest Thursday, Sept. 22, as the Board of County Commissioners proclaimed the month of September 2022 Sickle Cell Awareness Month. The designation shines a light on the disease while dispelling the myths and stigma surrounding it. It also raises awareness about advances in research, care practices and treatments.
The proclamation also highlights how systemic racism plays a role in this disease that occurs far more often in Black and African Americans and among people who identify as Hispanic than in their white counterparts.
Commissioner Sharon Meieran, who sponsored the proclamation, shared that when she worked as an emergency room doctor in Cincinnati, she saw firsthand how ill-prepared the health system was to serve sickle cell patients despite 40% of the city’s population being Black.
There, she saw “people coming in and in extreme pain or short of breath, and some of my colleagues just not believing and kind of pushing that aside,” she said. She advocated for more education to help providers better understand the disease.
According to the Centers for Disease Control and Prevention, sickle cell disease occurs in roughly one out of 365 African-American births, and about 1 in 13 African-American babies are born with the sickle cell trait. Those born with sickle cell have a life expectancy of just 40 years, compared to the national average of 75.
The treatment, awareness and research of sickle cell disease “ is a racial justice issue,” Commissioner Susheela Jayapal said, noting that cystic fibrosis, as a similarly inherited and life shortening disorder that affects predominantly white people, has received 11 times more research funding than sickle cell. There are also 15 medications approved for cystic fibrosis, versus just four for sickle cell disease.
“Today’s proclamation brings awareness to the disease and it reminds us that we need to disrupt racism in all of its forms to maximize health for all of our communities,’’ Jayapal said.
While there is no known common cure yet, the disease is treatable. Through early screening and identification, awareness, education and culturally responsive care, advocates say sickle cell disease can be managed.
For Rep. Travis Nelson, a nurse and the only Black man in the Oregon House of Representatives, addressing sickle cell disease is personal. It’s an honor to be in a position to raise awareness about the disease, he said.
Over his 20-year career, Nelson told Commissioners, he has seen Black people needing care for the disorder be stereotyped as drug addicts, have their pain ignored, and have their health complaints discounted.
Rep. Nelson called on the Board to evaluate how it can continue to support screenings and prevent negative outcomes for people suffering from the disease.
“It is imperative that we address these disparities and provide equitable resources for those impacted by sickle cell disease,” Rep. Nelson said. “Quality, affordable healthcare is necessary to improve quality of life.”
The Sickle Cell Anemia Foundation of Oregon is one of the organizations providing education and resources. The foundation was founded 40 years ago in honor of Pastor Marcia Taylor’s daughter, who passed away from sickle cell complications. Since then, she has made it her mission to raise awareness about the disease.
The foundation provides information on medications and treatments; offers hospital support including visits and flowers and outside advocates; and supplies emergency backpacks with doctors’ protocols. They also provide mental health counseling to help clients navigate the psychological impacts of sickle cell disease.
“We need more awareness and this will help us to raise other funds to put more boots on the ground so that we can better support our clients,” Taylor said.
After adopting the proclamation, Board members showed their support for continued education and broader community awareness about sickle cell disease.
“The more people that we can educate about this terrible disease, the closer we can get to treating it and hopefully preventing it someday,” Commissioner Lori Stegmann said.
“I hope this proclamation today will lift up the need for greater investment and greater advocacy and awareness and how it’s impacting our community here in Multnomah County, in Oregon, but also, across the country and globe,” Commissioner Jessica Vega Pederson said.
"If we can just take the time we're taking today to get the word out to the community, then I think we will have done a very good deed," said Chair Deborah Kafoury.