Pennsylvania native and current Florida resident Lauren Cephus has spent years advocating for patient rights and improving health care access for anyone living with a chronic disease.
A retired social worker, behavioral health therapist and member of the Service Employees International Union (SEIU) – and now a kidney patient herself – Cephus works to advocate and protect the rights of all patients, volunteering with A.T.L.A.S. – a grassroots dialysis advocacy group – and The Black Commission Inc., a political lobbying group.
A mother of six, Cephus started taking ibuprofen throughout her pregnancies to help manage splitting migraines and enable her to continue working full-time. While her blood pressure rose significantly with each pregnancy, it returned to normal after each child was born. However, after her last child’s birth, things didn’t go as smoothly – her blood pressure remained high and wouldn’t go down.
Cephus was diagnosed with kidney failure in 2012 and has been on dialysis since 2014.
“I will always be a social worker at heart, and I will always find ways to volunteer and help build awareness,” says Cephus. “With more and more people living with kidney disease, we need to make sure that there are enough resources being provided for everyone.”
A growing health issue in the United States, kidney disease affects as many as 700,000 citizens, and the disease continues to disproportionately impact already marginalized populations. African Americans make up one-third of those living with kidney disease in the U.S.
Volunteering with The Black Commission Inc., Cephus and the group helps address civil rights issues within the African American community – everything from education to health care needs. And with African Americans being disproportionally affected by kidney disease, it is important to build awareness and increase access to community resources.
As insurers continue to find new ways to deny coverage to expensive and marginalized patients, they are becoming increasingly creative to find ways to save their money and deny coverage to patients, such as limited networks.
“When I looked into getting treatment for my high blood pressure, the only place I could go in Florida through my insurance was in Gainesville, Florida –a 1 ½ hour drive one-way – and they only had appointments available at 7 a.m.,” she says. “Making this trip, taking care of my family and seeing my daughter off to school just wasn’t possible.”
While insurers have been pushing the government to prevent patients from turning to nonprofits and charities for help in paying their insurance premiums, many patients – like Cephus – are using their voices and actions to stand up to big insurance companies.
Advocacy comes in many different forms. To Cephus, advocacy comes down to education and sharing your story.
“It’s important to share my story and help people realize what resources are out there to help prevent and treat kidney disease,” she says.