September 13 may have seemed just like a typical Tuesday in the nation’s capital. But for West Virginia University alumna and Pittsburgh area resident Julie Cerrone, it was anything but typical.
Cerrone had the opportunity that Tuesday to have her voice heard by the U.S. Food & Drug Administration regarding stem cell research. The FDA hearing on the campus of the National Institutes of Health was an opportunity for the former Deloitte senior consultant to take a business approach to the topic so near and dear to her.
“Patients need to be at the center of important health care decisions and products, and appearing before the FDA was a great opportunity to make that point,” Cerrone said.
She ought to know. Cerrone, a 2008 management graduate of the WVU College of Business and Economics and Bethel Park, Pa., resident, has endured chronic pain during the course of her life, survived melanoma and has psoriatic arthritis, a type of inflammatory autoimmune arthritis. Her biggest health challenge has been that of avascular necrosis, also known as osteonecrosis, the death of bone tissue due to a lack of blood supply. A blood clot in her left knee in 2012 impacted the femur bone due to a lack of blood supply, leading to her December 2012 diagnosis. “My bone kind of had a stroke and started to die,” said Cerrone.
She was met with challenge after challenge. Cerrone conducted her own research on her condition, and determined that stem cell information and treatment options were not readily available to patients. Cerrone explained that doctors in Colorado took stem cells out of her body and injected them into the affected area on the same day. This procedure, she said, represented a less invasive option with far better outcomes than other medical solutions of the past.
The results have been encouraging, to say the least. One year after the March 2015 procedure, doctors reported a 60% regrowth of her femur bone. The procedure, which is not covered by insurance, is only a fraction of the price of the only other option she saw: a $40,000 knee replacement. Her research, she said, led her to the lesser-known option of stem cell therapy and treatment.
The walk across the NIH campus was also noteworthy because she did not use the crutches she had depended on for three and a half years to preserve the left femur and prevent the bone from complete collapse. Cerrone was also free of all medicine that made her condition tolerable.
“I really felt I needed to tell my personal story. The obstacles I met occur on a daily basis to other people. I told the FDA that stem cell treatment got me back my life and made me better, and that patients need access to that information and that treatment option,” she said. “That’s why I went to the FDA, to let them know that patient access and keeping the patient in mind is critical when it comes to new stem cell procedures and new drugs.
“It became clear to me that I needed to have a business-like approach in addressing this subject,” she said. “I used the technical and business background that I received from WVU, and I incorporated a marketing campaign and used social media. I had to do my own research and found stem cell procedure information online. And I talked to patients who had gone through this type of thing. From a business perspective — from a human perspective — this was the right approach.”
While she left Deloitte due to her physical limitations, she has channeled her experience into WEGO Health, a network of more than 100,000 influential members of the online health community.
“I want to help develop technical solutions for the benefit of patients, and the goal is to advance a patient-centered health care system,” she said. “I feel I have a well-rounded skill set to help health care companies because of my extensive business experience and my experience as a patient.”
Cerrone will soon speak at the Stanford Medicine X conference in Palo Alto, Calif., where she will make two presentations: one on how she used social media, patient advocates and her own research to regrow her femur bone, while the second is a patient case study about how she gathered data to create a precision medicine approach to her psoriatic arthritis.
“Now because of all my health issues, I feel like I have this personal charge that I need to help move forward a patient-centered health care landscape as much as I can,” Cerrone said. “It is a full time job to take care of my health, too. I’m always going to have health problems; psoriatic arthritis is an autoimmune condition for which there is no cure. I feel like I need to be an advocate for other patients, and to use my experience in business and as a patient to do good.”