More than three million people in the United States are living with very high triglycerides 500 mg/dL or higher, also known as severe hypertriglyceridemia (sHTG), yet many are left to navigate a complex care journey largely on their own.
Clinical guidelines provide evidence-based recommendations for identifying and managing very high triglycerides, including reducing the risk of one of its most serious and potentially life-threatening complications – acute pancreatitis. Despite this, many people spend years searching for answers and piecing together information about their diagnosis. Some may not fully understand the importance of protecting against the risk of acute pancreatitis until they experience this medical emergency themselves.
With support from Ionis, the Hidden in Plain Sight white paper was developed in partnership with the National Triglyceride Alliance, leading clinicians, patient advocates, people living with very high triglycerides and their care partners to examine the gap between recognition and care and the collective action required to close it.
Here are four key takeaways from the paper:
Close the information and care gaps: Although clinical guidelines offer clear, evidence-based recommendations, those recommendations are not consistently applied in routine patient care. Gaps in education, referrals, integrated care or long-term follow-up can leave people without the information or support they need.
At diagnosis, patients should receive a clear explanation of the diagnosis and its risks as well as a personalized plan that addresses appropriate lifestyle modifications and medical therapy. Timely referrals to specialists and an established follow-up plan are also essential to support long-term care.
Educate about the risks of acute pancreatitis before the first attack occurs: Reducing the risk of acute pancreatitis is one of the most important goals of identifying and managing very high triglycerides early. A single acute pancreatitis attack can have devastating consequences, including organ failure, diabetes caused by pancreatic injury or even death. Due to a lack of education, many patients do not even learn about the risk of acute pancreatitis associated with very high triglycerides until they experience an attack.
Education must happen earlier so patients can develop a management plan with their care teams before their first attack.
Reduce the stigma and provide individualized support: Patients have described being told to lose weight, improve their diet or exercise more, even when they were already taking those steps. Those experiences left many feeling that their condition was being viewed as a lifestyle choice or personal responsibility, rather than a complex medical condition.
Conversations about very high triglycerides should reflect its biological complexity and be approached with curiosity, empathy and individual assessment. Reducing blame can help patients feel heard, reduce the stigma and strengthen trust between patients and their care teams.
Multidisciplinary care should become the standard, not the exception: People living with very high triglycerides may benefit from a coordinated care team across healthcare professionals, including primary care, lipid specialists and registered dietitians, among other team members. However, this level of support is not always offered.
Expanding access to multidisciplinary care, establishing shared care plans and coordinating follow-up can help ensure every member of the care team works toward the same goals. No patient should ever feel alone.