NPPACT Hosts First Congressional Event

The Hydrocephalus Association (HA) recently partnered with the Spina Bifida Association (SBA), Arthritis Foundation, Tourette Association of America, and the National Partnership for Pediatric to Adult Care Transition (NPPACT) to host a Capitol Hill Briefing centering on pediatric to adult healthcare transition.

The Hydrocephalus Association and the Spina Bifida Association co-launched NPPACT to mobilize the patient stakeholder community around the challenges faced by pediatric patients as they age into the adult healthcare system.

As young adults with pediatric-onset conditions in the complex care community transition to an adult healthcare provider, many are left to navigate the ever-complex healthcare system on their own. This healthcare transition is rife with barriers to successful adult care access and continuity of care.

Pediatric departments, particularly in pediatric specialty clinics, have the medical expertise and ability to meet the healthcare needs of patients with pediatric-onset conditions. The adult system, however, has significant differences in care models including shorter appointment times, a lack of coordination among specialists and/or clinics, and varying degrees of knowledge and expertise, particularly with rare or complex conditions. As the responsibility shifts from the caregiver to the patient for managing care, young adults face difficulties as they navigate through the new system.

Some of these difficulties are described in the article, I Am Not The Doctor For You, which provides broad examples of why providers choose to stay away from adult patients with disabling or complex conditions. The challenges faced by young adults extend beyond the doctor’s office, spanning from healthcare reimbursement, health coverage differences, and workforce issues. The culmination of these challenges can leave patients with feelings of hopelessness, isolation, and anxiety. These barriers can result in gaps in care that can be life-threatening.

The Congressional Briefing, titled Healthcare Transition: A Care Cliff for Pediatric Onset Conditions, brought together an expert panel led by SBA CEO, Sara Struwe, to educate Congressional staff on this pressing issue. The unique background of each panelist brought a different perspective to the discussion.

Erin Teeple, a pediatric and adult colorectal surgeon and Assistant Professor of Surgery and Pediatrics at George Washington University School of Medicine, provided valuable insight into the challenges faced by adult providers when seeing medically complex adult patients. As the director of the Colorectal Transition Program at Children’s National Hospital, she oversees the continuity of care for multiple pediatric colorectal patients.

Her testimony emphasized the provider barriers within adult care, including inadequate payment incentives. “Level 5” visits are common for patients with complex conditions. These visits require more time with the patient and extensive medical decision-making, yet are not reimbursed at a level that corresponds to the time required. This disincentivizes advanced physicians from taking on patients who require advanced medical needs, leaving patients without the care they need and deserve.

Annie Kennedy, the Chief of Policy, Advocacy, and Patient Engagement at the EveryLife Foundation for Rare Diseases, spoke on the care needs of patients with rare and chronic conditions transitioning to the adult healthcare system. Transition can demand a large amount of time and commitment on the part of families, which can be exhausting for both patients and caregivers. These barriers are usually exacerbated for patients with rare and complex conditions. For conditions where centers of excellence or multidisciplinary facilities are available, they can be effective in addressing coordination needs. However, patients don’t always have access to these and they do not exist for all medical conditions. Additional services like transitional coordinators can help patients without center of excellence access navigate the new system.

Domonique Robinson, a patient advocate with spina bifida and hydrocephalus, gave a powerful portrayal of the challenges faced during her own transition. After going years without neurological complications, she was forced to navigate the adult system during a needed brain surgery to manage her hydrocephalus. The procedure would implant a medical device called a shunt into her brain to drain the excessive buildup of fluid.

Lack of expertise from her new adult neurosurgeon caused extreme complications after the brain surgery. Despite large levels of pain post-surgery, her symptoms were downplayed by medical professionals. After much effort to advocate for herself, she was able to get the treatment she needed. Domonique’s story underscores how much work she had to endure to be heard and how much work remains to be done. To address these gaps in her care, she proposed additional services to assist patients during their transition. She also proposed that adult practitioners use more compassion while treating patients.

The panel’s testimony underscored the importance of report language that would survey the Department of Health and Human Services on their current programs and policies assisting pediatric to adult transition. NPPACT and its member organizations have submitted this request for FY25. The assessment of current government infrastructure is needed for patient stakeholders to analyze new approaches for effective continuity of care. NPPACT will continue to monitor the FY25 Labor-HHS Appropriations Bill as it moves through the House and Senate .

To view our House and Senate letter of support click HERE.