Why Adult Patients Must Lead

Adult intestinal failure exists in a structural and cultural gap. Pediatric IF has benefited from concentrated research investment, specialized multidisciplinary programs, and a clear clinical narrative of growth and development. Adult IF has not.

In this environment, adult patients cannot remain passive recipients of care. They must lead — as informed partners, advocates, educators, and drivers of research and system change.

Research funding and attention remain disproportionately weighted toward pediatric populations. Survival gains in children have created a growing population of adults living with lifelong IF — yet the evidence base for long-term management, quality of life, aging with IF, and adult-specific complications lags behind.

Many adult gastroenterologists, surgeons, and primary care providers receive limited training in intestinal rehabilitation, home parenteral nutrition, central-line management, and the complex interplay of motility, absorption, and psychosocial burden. Transition from pediatric to adult services frequently exposes these gaps.

Specialized intestinal rehabilitation centers are scarce outside major academic hubs. Insurance coverage for home PN and multidisciplinary follow-up varies widely. Geographic distance and the administrative burden of prior authorizations fall heavily on patients already managing complex regimens.

Adults with IF and their caregivers often piece together knowledge from peer networks, online communities, and trial-and-error because reliable, adult-specific educational resources are scarce. These gaps translate into delayed diagnoses, preventable hospitalizations, and eroded quality of life.

Founded by lifelong SBS patient Andrew “Andy” Jablonski, SBSF has grown into the leading patient-founded and patient-led voice for short bowel syndrome in the United States and a global resource for thousands. Through education, peer support, and persistent advocacy, the Foundation has elevated the lived experience of adults and families — ensuring real-world needs shape clinical practice and research priorities.

SBSF played a direct role in the FDA approval and global launch of Gattex® (teduglutide), making certain that patient voices were heard at every step, and has continued to advise industry partners while educating clinicians at major medical meetings.

Organized FDA patient-led listening sessions on short bowel syndrome, bringing adult patients and caregivers directly before regulators to describe the daily realities of HPN, quality-of-life burdens, and unmet therapeutic needs.

Patient organizations and advocates have co-created transition-of-care roadmaps, appointment checklists, and clinician conversation guides so the shift from pediatric to adult services reflects lived experience rather than institutional convenience.

Like earlier movements in cystic fibrosis, Duchenne muscular dystrophy, and HIV/AIDS — when systems underinvest or lack expertise, patients who live with the condition daily become the most consistent source of data, urgency, and practical knowledge.

Traditional medical models positioned patients as recipients of expert knowledge. In rare and complex conditions such as adult IF, that model is incomplete and often harmful.

Patients accumulate years of granular data about their own responses to formulas, infusion rates, line care, dietary modifications, and the interplay of symptoms with daily life. They notice early warning signs that intermittent clinic visits miss. They navigate systems — insurance, home care companies, emergency departments — that many clinicians never fully encounter.

Inclusion of adult patients on guideline committees and research steering groups

Co-creation of educational materials and transition protocols

Formal mechanisms for patients to report outcomes that matter to them

Training programs that teach clinicians how to listen to and incorporate patient expertise

Patients educating new clinicians about line-care routines that prevent infection, contributing real-world data to registries, advocating for coverage of therapies that improve function rather than merely survival, and mentoring peers through the transition from pediatric to adult systems. It looks like clinicians who treat patient observations as data rather than anecdote — and systems that measure success by whether patients can live full adult lives.

Adult IF will not close its research, knowledge, and access gaps solely through institutional goodwill. Those gaps persist precisely because the adult voice has historically been quieter and less organized than the pediatric narrative.

Closing them requires adult patients to lead — articulating priorities, generating evidence, training the next generation of clinicians, and insisting that care systems treat them as the experts they have necessarily become. Leadership is no longer optional; it is the most realistic path to better outcomes.