For Rare Liver Disease Patients, Care Transitions Pose Yet Another Risk
Global Liver Institute Leads Rare Liver Diseases Month Campaign to Highlight Ways to Smooth Care Transitions
(Washington D.C., February 1, 2024) – Today marks the start of Global Liver Institute’s (GLI) 2024 #RareAware campaign, which calls attention to the more than 100 rare liver diseases throughout February, Rare Liver Diseases Month. Drawing upon insights from patients, caregivers, advocacy groups, clinicians, and other interested parties, the campaign addresses the challenges that transpire when someone with a rare liver disease encounters a transition – whether from pediatric to adult care, from pre- to post-transplant, from inpatient to outpatient care, or another transition.
Over 100 pediatric and rare liver diseases persist around the world. Rare liver diseases, in many cases, require life-long management, including both inpatient and outpatient care, serious procedures, and lifestyle interventions. For instance:
- In a study covering half of US transplant hepatologists, nearly a third of adult transplant hepatologists had no transition strategy in place to take care of new patients who had undergone transplantation as children.
- Wilson disease, in which excess copper builds up in the liver, requires lifelong medication – yet 40% of patients do not receive adequate support to follow their medication routine.
- Primary biliary cholangitis (PBC) can progress to life-threatening cirrhosis, or permanent scarring, of the liver – which happens for between 10 to 26% of patients within the first decade of diagnosis. The disease requires ongoing tracking and active management.
“Rare liver disease patients face needless obstacles just to receive an accurate diagnosis and the care they require,” shared Donna R. Cryer, JD, founder and CEO of GLI. “Transitions in care are inevitable – especially when a disease develops during childhood. Yet without intentional preparation, discussion, and guidance, a predictable transition can become a complicated, confusing, and even fatal process. Everyone involved – from caregivers and patients to clinicians and social workers – should begin open, thorough discussion as soon as a transition is on the horizon.”
Transitions in care can not only be confusing but also financially costly. Each year, acute care for Medicare patients (which includes those under 65 with end-stage renal disease or who receive disability benefits) costs $26 billion. Unexpected financial burdens can lead to medical bankruptcy or create barriers and delays to home ownership, higher
education, and other foundational financial investments. To avoid negative impact on health, wealth, and overall well-being, patients and everyone on their new care team must have informed discussions about both what is going on and what they are responsible for.
GLI is leading those discussions throughout the campaign with useful educational materials, an Empowerment Day for pediatric patients, informative conversations about different aspects of care transitions, and Q&As with experts. The campaign culminates in advocacy efforts to increase policy attention to rare liver diseases on the rarest day on the calendar, February 29 – Rare Disease Day.
No matter the role, each person can make a difference to ensure smooth transitions in care for patients with rare liver disease.
- Patients: Use your rare voice to ask your care team about upcoming changes, to advocate for the resources and information you need, and to share your story with your community.
- Caregivers and family: Consider asking your loved ones how they are preparing physically and emotionally for upcoming changes, how you can help, and how it might change the dynamics of your relationship with them.
- Clinicians: Ensure that you are listening thoughtfully to your patients, preparing them for the changes ahead, and maintaining an unencumbered line of communication with their new providers.
- Healthcare administrators: Create, fund, recruit, and train a robust staff of nurse navigators and social workers so that a knowledgeable guide can walk alongside patients through transitions in care within your system.
- Industry leaders: Involve patient input and patient priorities in the drug development and implementation processes to ensure the tools exist to meet patient priorities and needs across the continuum of care.
Learn more about the month-long #RareAware campaign and GLI’s year-round activities to support pediatric and rare liver disease patients at globalliver.org.
About Global Liver Institute
Global Liver Institute (GLI) is a 501(c)3 nonprofit organization founded in the belief that liver health must take its place on the global public health agenda commensurate with the prevalence and impact of liver illness. GLI promotes innovation, encourages collaboration, and supports the scaling of optimal approaches to help eradicate liver diseases. Operating globally, GLI is committed to solving the problems that matter to liver patients and equipping advocates to improve the lives of individuals and families impacted by liver disease. GLI holds Platinum Transparency with Candid/GuideStar, is a member of the National Health Council, and serves as a Healthy People 2030 Champion. Follow GLI on Facebook, Instagram, LinkedIn, and YouTube or visit www.globalliver.org.