Pennsylvania lawmakers are seeking to enact a law that would decrease the chances of missing a rare and serious form of breast cancer.
Marnie’s Law is named after Marnie Schulenburg, an Emmy-nominated actor known for starring on the CBS soap opera “As the World Turns.” A graduate of DeSales University, Schulenburg died in 2022 at 37 years old of inflammatory breast cancer.
Marnie Schulenburg arrives at the 37th Annual Daytime Emmy Awards at Las Vegas Hilton on June 27, 2010 in Las Vegas, Nevada. (Photo by Jordan Strauss/Invision/AP Images)
Inflammatory breast cancer is a relatively rare form of breast cancer that causes swelling of the breasts and changes in the skin, and tends to develop rapidly, rarely forming a distinct lump characteristic of many other types of breast cancer. It tends to develop earlier in life than most breast cancers and also tends to affect Black women more often.
Shortly after giving birth, Schulenburg began experiencing symptoms that led her to go to the doctor, where she was misdiagnosed with mastitis, inflammation of the breast, which can closely resemble inflammatory breast cancer. Instead of receiving cancer treatments, she received multiple rounds of antibiotics to fight an infection she didn’t have.
Because of how fast the condition progresses, what would have been treatable if it had been caught earlier ended up progressing to the point where she could not survive even with treatment.
Marnie’s Law, which was introduced in September by Reps. Jennifer O’Mara, D-Delaware, and Bridget Kosierowski, D-Lackawanna, would require healthcare providers to be educated on the condition to prevent similar misdiagnoses.
“Her story is repeated too often and would never have happened if just one healthcare worker who had her as a patient was aware of IBC and wrote these words into her chart, ‘Test to rule out inflammatory breast cancer,’ ” Schulenburg’s father, John Schulenburg, said at a news conference Monday. “During that time, she received consultations from her primary care internist, two physician assistants, a breast specialist, a lactation nurse and numerous other attending nurses all the way up and down the chain. None of them were aware of inflammatory breast cancer. This happens far too often and Marnie’s Law will put an end to it.”
Schulenberg’s husband Zack Robidas, said the family was overwhelmed by support of legislators in enacting Marnie’s Law.
Robidas, a Reading native, and Schulenberg met at DeSales. Shortly after her diagnosis, Robidas said, Schulenberg took to social media to share her story and advocate for other women going through the same thing.
“Marnie was already thinking about other people,” he said. “Even in the middle of the hardest moment of her life, she was thinking about the next mother who might be going through the same thing.”
“Marnie’s Law is about educating medical professionals to recognize the warning signs, and to know when to investigate further,” he added. “We’re here to continue what Marnie started. We’re here to give more women more time.”
John Schulenburg said that in Massachusetts, where he lives, an estimated 800 people per year are misdiagnosed with the condition. He said by passing the law, Pennsylvania would save hundreds of lives per year and at no additional cost to taxpayers.
Rep. Gina Curry, D-Delaware, said that by the end of 2026, an estimated 13,720 Pennsylvanians will be diagnosed with breast cancer and 1,770 are expected to die from the disease. Inflammatory breast cancer accounts for approximately 1%-5% of breast cancers, meaning there could be nearly 700 new cases this year in the state. And she said, based on estimates, more than 250 of those people could be diagnosed.
“Recognizing this disease is not just an awareness issue. It is an issue of timely diagnosis, health equity, and potentially life-saving action,” Curry said. “Marnie’s experience shows us what can happen when the warning signs of this devastating disease are not recognized in time.”