Hackensack Meridian Health Hackensack University Medical Center participated in the first-ever externally-led Juvenile Idiopathic Arthritis (JIA) Patient-Focused Drug Development (PFDD) meeting in Washington, D.C. earlier this month. The meeting was hosted by the world’s largest network of arthritis patients, the Arthritis Foundation, and the largest network of pediatric rheumatologists, the Childhood Arthritis and Rheumatology Research Alliance (CARRA). Yukiko Kimura, M.D., chief, Division of Pediatric Rheumatology at the Joseph M. Sanzari Children’s Hospital at Hackensack University Medical Center and immediate past president of CARRA, was a featured presenter at the meeting and served on the planning committee that organized the noteworthy event.
“Joseph M. Sanzari Children’s Hospital is thrilled to be part of this extraordinary meeting that empowers families to speak to the FDA and health care leaders about the profound impact that arthritis has on their lives,” said Dr. Kimura. “This meeting will help influence the future of drug discovery and deepen the industry’s understanding of the needs of patients and caregivers.”
The meeting allowed patients and caregivers to speak directly to the U.S. Food and Drug Administration (FDA) and other regulatory agencies, drug developers, health care providers and academic researchers about how arthritis and its treatment affect their lives, and how urgently new treatments are needed to be available to children and young people with arthritis. JIA encompasses all the common types of chronic arthritis in children which cause inflammation in joints and potentially other areas of the body. There have been tremendous advances in the treatment of these diseases in the past 10 to 20 years, but more research for newer and better medications is still needed.
Hackensack University Medical Center patients and families were well represented at the meeting. Four of the 12 panelists were patients or parents with children being treated at the medical center. Nick Kim, a 17-year-old high school senior, was diagnosed with JIA in October 2017. Nick served as a panelist and spoke about the burden of the disease, particularly its emotional impact. “When I was first diagnosed, I didn’t understand the disease. It was all too much for me to process,” said Nick. “But as hard as it was physically, the emotional pain was much worse. The feeling of isolation was overwhelming.”
Since his diagnosis, Nick has become an active member of the JIA community. “Speaking at the JIA Patient-Focused Drug Development meeting was amazing. It’s incredible that these experts are willing to listen to what I have to say and that our voices are just as important as the doctor’s voice,” said Nick. “In the process of fighting this disease, I have gained so much hope from listening to the resilience of other patients, which led me to believe that in the end, I will be mentally (and maybe even physically) okay, even with the heavy burdens the disease casts on me right now.”
Vincent Del Gaizo, whose 18-year-old son suffers from systemic JIA, also served on the planning committee and was a panelist at the PFDD meeting. Diagnosed in 2001, Mr. Del Gaizo’s son has been a patient at Hackensack University Medical Center since he was 15-months-old. “When my son was first diagnosed, I had a million questions, but got very few answers. I was shocked at how little was known about the disease at that time,” said Mr. Del Gaizo. “Dr. Kimura saved my son’s life and provided us with a pathway to be engaged in his treatment plan.”
Shortly after his son’s diagnosis, Dr. Kimura steered Mr. Del Gaizo toward CARRA, which allowed him to become very active in the JIA community, engage more closely with physicians and learn more about research and clinical trials. Now, nearly two decades later, Mr. Del Gaizo is the director of Strategic Partnerships and Patient Engagement for CARRA.
As a panelist, Mr. Del Gaizo represented parents and spoke about the importance of patient collaboration in clinical trial development. “Parents want to have a seat at the table throughout the entire trial development process. We might not be experts on the science, but we know what’s important to us in managing the disease,” said Mr. Delgaizo.
“Even for me, a provider who sees patients with JIA every day, this meeting was an eye-opening experience,” added Dr. Kimura. “Listening to these children and families share their stories and the challenges they face every day living with arthritis was a revelation and a very moving experience for everyone.”
Hackensack University Medical Center is a leader in the field of pediatric rheumatology. Doreen Tabussi, MSN, APN, CPN, nurse coordinator and nurse practitioner for the section of pediatric rheumatology at Hackensack University Medical Center, was awarded HEALTH CARE PROFESSIONAL LEADERSHIP award at the Arthritis Foundation’s 2018 National Juvenile Arthritis Conference in Washington, DC this month.
Earlier this year, the medical center was selected to be ONE OF ONLY THREE PILOT PEDIATRIC SITES in the United States to participate in a groundbreaking rheumatology initiative led by The Dartmouth Institute for Health Policy and Clinical Practice and funded by the Arthritis Foundation. The Rheumatology Learning Health System (RLHS) is an innovative, new model for health care co-production for children, teenagers and adults suffering from inflammatory arthritis.