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When Jackson Webb started having trouble walking at age 7, his family began a diagnostic and treatment journey that had them confronting bias, uncertainty and a sometimes unfair health care system.
Jonathan Webb recounted at Sunday’s plenary how his son was nicknamed “Action Jackson” because of his exuberant energy.
“If you look up the definition of activity and emotion in the dictionary, there would be a picture of him,” Jonathan said during the Stockman Lecture titled “Navigating Chronic Conditions With Families Through Partnership and Advocacy.”
“Jackson loved to run, play basketball, football, baseball, run around the playground and dance. Things were good,” he said.
Shortly after Jackson’s sister was born, those close to him at school noticed his energy and physical abilities were declining. These issues soon became apparent to his family.
“The energy at home was waning, and we confirmed what his teachers were seeing,” Jonathan said. “Jackson was spending most of his time on the ground, entertaining his 4-month-old sister instead of launching on top of the couch.”
What came next was a scary and sometimes frustrating process for the family as they began visiting doctors and specialists. Some questioned the veracity of Jackson’s symptoms.
“Our family has been on this journey for more than 10 years,” Jonathan said. “The health care system, in my opinion, is unnecessarily difficult to access, and it can be even harder to navigate. It shouldn’t require the stars aligning … to get the care needed.”
The family documented what they were seeing at home to prove their son’s issues were real. Challenges continued to arise as the family was without health insurance for many weeks.
“This prevented us from being able to be seen for further follow-up,” Jonathan said.
Appointments finally were made at Ann & Robert H. Lurie Children’s Hospital of Chicago and at Children’s Hospital of Philadelphia, which led to a diagnosis of chronic inflammatory demyelinating polyneuropathy (CIDP), a rare neurological disorder that involves progressive weakness in the arms and legs.
“Our treatment plan included beginning with the lowest-cost option for several months,” Jonathan said. “When this didn’t work, we had to petition to move to a higher, more effective option. After connecting with other parents of kids with CIDP, we learned that our paths to diagnosis and treatment were similar, filled with trial and error, and in some cases, requiring families to provide evidence of a subtle decline and prove their cases.”
Though the family found many partners along this journey, they still fought with payers to have treatments and medications approved, and had to handle some unpleasant experiences with health care providers.
“We had a supportive pediatrician and now an attentive and interested pediatric neurologist,” Jonathan said. “We struggled to be truly seen in those earlier visits. Our charge to you is to see past the phenotype of a patient or the case study that indicates that a person of a certain color or socioeconomic status will present a certain way. If necessary, challenge any bias that might exist and see me, my family and those patients that you experience as the unique people that we are.”
This week, Jackson celebrated his 18th birthday. The initial diagnosis and long days spent in hospitals receiving treatment caused him to mature quickly, he said. By the time he entered high school, he was able to play baseball and run track and cross country.
“I want to give a big thank you to all of the hospital volunteers and child life specialists that helped me pass the time during these long infusions,” Jackson said.
Last April, more than a decade after the initial diagnosis, Jackson began to feel muscle weakness again. He returned to Children’s Hospital of Philadelphia to undergo additional treatments and physical therapy. He now receives infusions at home and has since regained his strength.
As he prepares to head off to college and major in biology, Jackson already is helping others who also face rare diseases. He is a trained patient advocate and has visited Capitol Hill to meet with legislators to lobby for rare disease research and access to treatments.
“In many instances, a patient brings all of their health care baggage and the weight of navigating this complex system with them to your visits, along with the worry and pain of whatever it is they’re battling,” Jackson said. “Our challenge to you is to see them, see them for who they are, the person, not just the patient, and not just the illness. Those providers who took the time to check in with us to learn about what we were going through and seem to genuinely care about us made a world of difference on some very dark days. We know the health care system doesn’t often allow for significant time to be spent with patients, but this connection and feeling seen is so important.”
