Over a year. That’s how long it took me to get a Tumor Necrosis Factor inhibitor (TNFi) approved for one of my four-year-old patients with an inflammatory rheumatic disease. The delay was not because the medication was experimental or the diagnosis was uncertain, but because of prior authorization processes imposed by her insurance. Sadly, her story is also not unique. She is just one example of how repeated appeals, hours of paperwork, and administrative red tape for treatment are hurting children.
During my time as a pediatric rheumatologist, I am thankful to have seen significant and promising medical innovations. When pediatric rheumatology emerged as a medical specialty 50 years ago, treatment options were limited and often had significant side effects. Fast forward to today, and we have innovative, targeted therapies that can reduce pain, preserve joint function, prevent organ damage, and help children live fuller, healthier lives.
These therapies can make a difference for patients, but only if they can access them. For children, access is often hindered by longer delays and more stringent prior authorization requirements compared to their adult counterparts.
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No one wants their child to suffer, but just imagine the frustration of watching your patient or child in pain while knowing a physician-prescribed treatment exists that would help manage their symptoms and alleviate their suffering. This is particularly egregious when we consider that patients’ childhoods cannot simply be paused while the healthcare system catches up.
Every month of uncontrolled inflammation affects their physical development, growth, mobility, and social participation. A toddler learning to walk, a child trying to participate in school activities, or a teenager navigating social situations- these are all important developmental milestones that should not be colored by chronic pain and disease activity. I’ve seen some cases where the approval process takes so long that patients age out of pediatric care before they can access their prescribed therapy.
As a country, we have developed treatments capable of improving the quality of life and preventing long-term damage for children with rheumatic conditions, yet many children cannot obtain them when they need them most. This needs to change.
First, insurers should make it easier, not harder, for children to access therapies that are already recognized as appropriate standards of care. Recent widespread anger over high denial rates likely spurred efforts by UnitedHealthcare to reduce prior authorization requirements for many pediatric services, suggesting that payers are beginning to recognize the burden these requirements place on patients, families, and clinicians. More insurers should not only follow suit but also ensure that pediatric rheumatology treatments are included in their updated rules.
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Second, regulators at the Food & Drug Administration (FDA) and drug manufacturing companies should prioritize research into pediatric treatments earlier in the drug development process. When a therapy demonstrates safety and effectiveness in adults for conditions that also affect children, pediatric sub-trials should begin as quickly as possible. Children should not be left behind or forced to wait a decade — or more — for access to innovations in care.
Finally, I strongly urge policymakers to address the significant delays caused by FDA labeling gaps, which defer to insurance coverage decisions. Physicians should not have to spend months fighting for access to medications that are already supported by clinical evidence and widely accepted treatment guidelines just because insurance companies have outdated rules when it comes to pediatric care. As science advances and genetic discoveries continue, we are not only learning new things, but patients are also surviving conditions that were previously unknown or considered fatal. In cases like these, blanket lists of approved medications for well-described conditions can hinder treatment and improved outcomes for families facing these diseases.
2026 marks the 50th anniversary of pediatric rheumatology being recognized as a medical specialty. That alone is a milestone worth celebrating. Children diagnosed with rheumatic condition today have far more hope than patients did a generation ago. But this anniversary also provides an opportunity for reflection.
It’s time for efforts to streamline prior authorization policies and eliminate insurer interference in patient care to be prioritized. Our children deserve better.
Author bio:
Dr. Mirah Gillespie-Taylor is Assistant Professor, Pediatrics – Rheumatology at Baylor College of Medicine, Huffington Dept of Education, Innovation, and Technology and a member of the American College of Rheumatology’s Committee on Communications and Marketing.
Photo: Suriyapong Thongsawang, Getty Images