What is Intestinal Failure?
Intestinal Failure (IF) is a chronic, debilitating disease whereby the intestines cannot adequately absorb the nutrients, water and/or electrolytes needed for daily function, often forcing the need for intravenous or parenteral nutrition (PN) support. IF may occur due to actual loss of bowel length form disease or surgical resection, resulting in short bowel syndrome (SBS) or due to functional disease of the intestine, despite the adequate length. IF is designated to be an orphan disease due to its rarity and is estimated to affect approximately 40,000 adult patients in the US.
Due to its rarity, intestinal failure is a designated orphan disease, affecting approximately 40,000 adults in the US.
In recent years, parenteral nutrition (PN) has emerged as a life-saving therapy for patients with IF. With PN, nutrients, calories, and trace elements are delivered to patients through a venous catheter. While PN has been revolutionary in the field of intestinal rehabilitation, this treatment is complicated in a significant percentage of cases by liver disease or recurrent central line-associated bloodstream infections (CLABSI). Patients suffering irreversible IF or refractory PN deficiency who suffer PN-related complications become candidates for intestinal transplantation. The emergence of new growth factors related to naturally occurring Glucagon-like peptide-2 (GLP-2) offers hope for some patients to improve intestinal absorption and even be weaned off PN, but add significantly to cost and complexity of care.
The risk of life-threatening complications for patients with IF is heightened by the challenges of distance and access to expert care in a rare disease. Clinicians in remote areas and the patients they serve are hampered by lack of knowledge of both the fundamentals of IF management and new developments in the field. We believe these challenges can be mitigated through the use of the ECHO model.