6 Ways to Ease Financial Stress for Patients with Chronic Liver Conditions 

Dr. Nneka Ufere is a transplant hepatologist at Massachusetts General Hospital and an Assistant Professor of Medicine at Harvard Medical School. Her research focuses on health services and patient-centered outcomes in the areas of hepatology, transplant, and palliative care. She also tests supportive care interventions to increase the quality of life and care for cirrhosis patients and families as a clinical trialist. In 2024, Dr. Ufere received the Young Physician Scientist Award from the American Society for Clinical Investigation. 

Dr. Ufere has published more than 70 peer-reviewed publications. Her recent publications are featured in journals like Kidney360, Hepatology Communications, and Liver Transplantation. The full list of Dr. Ufere’s publications can be viewed here. 

Dr. Ufere spoke with GLI about the financial insecurities of patients with chronic liver disease. In her experience, the decision to seek medical care often boils down to affordability, at the end of the day. “The loss of household income due to medical costs may force patients to have to make tradeoffs between paying for their medications to manage their chronic liver disease or paying for their basic necessities, such as housing or food – a critical sign of financial distress. This leads to a feedback loop of worsening health and worsening financial burden, which can lead to adverse outcomes such as worsening health-related quality of life, increasing hospitalizations, and increasing caregiver burden, which are signs of financial toxicity.” 

Read on to learn 6 ways healthcare facilities can ease the financial burdens faced by patients with chronic liver conditions. 

1. Implement standard screening during clinic visits for financial stress

Integrating universal screening for financial burdens during clinic visits, particularly in rural or low-income areas, can better support patients and their families. Creating a standardized scoring system can help identify reasons why patients may struggle to access healthcare services, allowing for tailored accommodations, especially for those managing chronic conditions. Dr. Ufere suggests incorporating questions such as:

• Are you having difficulty paying for your medical care?
• Do you have obstacles that would make it difficult to pay for medical care?
• Have you delayed getting care in the past 12 months because you did not have transportation?

Leveraging nonprofit organizations and local networks can also aid in conducting thorough analyses of the financial challenges patients encounter as well. Through these measures, it will be easier to identify why patients are not coming to get the care they need and also accommodate bringing them to their check-ups. 

2. Deprescribe unnecessary medications and discuss lower-cost alternatives to reduce out-of-pocket expenses

On average, patients with chronic liver conditions may take anywhere from three to 10 medications simultaneously, with costs varying based on insurance coverage. Healthcare professionals need to monitor medication responses and discontinue unnecessary ones promptly. This not only saves the patients from spending extra money on unnecessary medication but also prioritizes patient health. Dr. Ufere also suggests exploring the use of websites like costplusdrugs.com for affordable alternatives. Patients must be informed of all available options, considering the large financial impact medications can have. Providers should explore alternatives with their patients and should openly discuss effective options like using a generic. 

3. Discuss the pricing of medication transparently and provide early assistance for prescription drug prices 

Often, patients are only aware of their medication costs once they reach the pharmacy counter. To adhere to their medication regimen effectively, patients need to know the costs and have the chance to plan accordingly. Dr. Ufere’s scoping review on financial burden outlines various strategies to aid liver disease patients and their families. One effective strategy involves early referral to co-pay and drug assistance programs, facilitated by pharmacy services. This initiative assists patients in managing prescription costs upon diagnosis, while also facilitating informed decisions about their medication based on affordability.

5. Provide transportation and parking vouchers for clinic visits

Adults with chronic liver conditions with transportation insecurities have a significantly higher risk of mortality, approximately double the risk compared to those without. The main factors contributing to these challenges are often the costs associated with public transportation, gas, and parking. Hospital systems and networks should consider offering community-appropriate services such as: 

• Hospital shuttles that make home visits 
• Free or reimbursed parking for clinic visits 
• Coupons for rideshare programs 

These resources can alleviate the burden of arranging transportation for clinic visits. Dr. Ufere stresses that “many specialized healthcare facilities for chronic liver conditions are limited and located in areas where transportation costs are high or too far away; therefore, providing patients with these resources will ease the strain for patients who may not always have the means to travel independently.”  

6. Provide caregiver support and training to allow them to give better care 

Financial burdens put a strain on caregivers as well. Increased out-of-pocket costs and increased hospitalizations associated with advanced chronic liver disease can elevate caregiver burden. Caregivers can also experience wage loss if they have to take time off work to travel to specialist appointments. Dr. Ufere says that providing caregivers with support and training on how to care for their loved ones can show them how to efficiently manage medical care while minimizing unnecessary expenses. Initiatives like a support group for caregivers can help them identify strategies to better support their loved ones.

For more information about the Pediatric and Rare Liver Diseases Council or to learn more about joining, please visit our webpage or email pedsrare@globalliver.org.

Navigating the Niche Nutritional Challenges of Rare Liver Diseases 

The lifestyle changes that come with a rare liver disease or any chronic condition can be daunting and frustrating. With a diet change, your meals, grocery bills, and even restaurant menus start to look different, not to mention the lists and diet recommendations from doctors that can be long and overwhelming. Many rare liver diseases require specialized nutrition to manage or improve health. 

Lysosomal lipid lipase deficiency (LAL-D) is a rare genetic disorder that affects the breakdown of lipids. It leads to the accumulation of lipids in various tissues, causing a range of health issues including hepatomegaly, which is an enlarged liver.

1. Restrict the intake of saturated fats and cholesterol, while making sure to include healthy fats such as monounsaturated and polyunsaturated fats found in foods such as avocados, nuts, and fish. 
2. Maintain a well-balanced diet with adequate intake of vitamins and minerals to manage complications. 
3. Manage caloric intake and monitor lipid levels to avoid excessive weight gain. 

Glycogen storage disorders are a group of rare genetic disorders characterized by the body’s inability to break down glycogen, a form of glucose (sugar) typically found in the liver/muscles, which can cause liver damage. Symptoms usually appear within the first year of a child’s life. 

1. Avoid fasting and eat frequent small meals and snacks to maintain glucose levels. 
2. Choose carbohydrates wisely; complex carbohydrates such as grains and legumes release glucose slowly, while simple sugars can cause unsustained energy levels. 
3. Eat uncooked cornstarch or similar supplements to help maintain stable blood sugar levels over long periods. 

Hereditary hemochromatosis is a rare genetic disorder identified by excessive absorption of iron by the intestines, which can lead to an accumulation of iron in various organs, including the liver. 

1. Limit iron-rich foods such as red meat, organ meats, and shellfish as well as iron supplements to avoid excess iron in the diet. 
2. Choose non-heme iron, found in plant foods such as beans, lentils, and tofu. 
3. Avoid vitamin C supplements or foods high in vitamin C since it enhances the absorption of nonheme iron.
4. Limit alcohol consumption, as it can increase iron absorption. 

Wilson’s disease is a rare genetic disorder leading to copper accumulation in organs, including the liver. 

1. Eat a low copper diet, limiting foods such as shellfish, nuts, chocolate, and mushrooms. 
2. Avoid food cooked with copper utensils. 
3. Take zinc under the guidance of a healthcare professional, which can inhibit the absorption of copper. 

Alagille syndrome is a rare genetic disorder that primarily impacts the liver and is caused by mutations in genes that play essential roles in fetal development. 

1. Consume a nutrient-dense, high-calorie diet to support weight gain and growth. Protein intake is also important for growth and muscle development. 
2. Supplements for vitamins (A, D, E, and K), calcium, and zinc may be recommended due to difficulties with absorption.
3. Calcium and vitamin D are recommended for bone health. 
4. Consume a low-fat diet to manage symptoms such as diarrhea and malnutrition. 

Tyrosinemia is a rare metabolic genetic disorder that impacts the body’s ability to break down tyrosine, a type of amino acid (the building blocks of proteins). 

1. Limit protein intake to reduce the accumulation of tyrosine in the body. 
2. Restrict foods such as meat, fish, eggs, some grains, and dairy products. 
3. For tyrosinemia (type I), seek a prescription for a medical formula that provides nutrients without causing further metabolic imbalance. Other vitamin and mineral supplements may also be needed. 

These recommendations may not apply to every individual case. Not only is regular monitoring of development and nutrition levels critical, but it is also important to seek guidance from a healthcare professional to manage your condition. Time, money, and access may also affect the ability to follow these guidelines. 

GLI is pleased to support the Medical Nutrition Equity Act (H.R. 6892), which provides for the coverage of medically necessary food, vitamins, and individual amino acids for digestive and inherited metabolic disorders under Federal health programs and private health insurance, as well as ensuring State and Federal protection for existing coverage. Malabsorption due to liver or pancreatic disease is explicitly included in coverage under the bill’s provisions. The passage of the Medical Nutrition Equity Act could be life-changing for those diagnosed and managing rare liver disease. Key potential impacts could include improved access, affordability, and health outcomes across the U.S. 

Reliable Resources, Meal Guides, and Information 

Glycogen Storage Disease 

Hereditary Hemochromatosis 

Wilsons Disease 

Alagille Syndrome  

LAL-D 

​​Tyrosinemia  

For more information about the Pediatric and Rare Liver Diseases Council or to learn more about joining, please visit our webpage or email pedsrare@globalliver.org.

Six Tips to Help Your Patients through Organ Transplantation

Dr. Alin Gragossian is a physician trained in both emergency medicine and critical care medicine at Equum Medical. Beyond her clinical roles, she serves as an associate medical director at Donor Network West, a nonprofit, organ procurement and tissue recovery organization serving Nevada and California. Notably, Dr. Gragossian brings a unique perspective to her work, having undergone a heart transplant in 2019 at the age of 30. 

Drawing from her personal journey, she emphasizes the importance of tailoring care approaches to individual experiences including aspects such as navigating post-transplant monitoring and fostering open communication between patients and providers. Dr. Gragossian also emphasizes some lesser-known elements of the transplant process that can facilitate a smoother transition. 

1. Address new mental stressors 

Recovery often focuses on the physical changes resulting from transplantation, but mental health poses a challenge to a patient’s well-being, too. These patients may experience anxiety, adjustment disorders, or psychological changes due to medications. Steroids in particular can induce mood swings and cause sleep disturbances. As a patient and a physician, Dr. Gragossian says, “I was much more prepared for the physical things that were going to happen to me post-transplant, but I do feel like psychologically there needs to be some improvement emphasizing for patients that their brain might go through some changes.” When delivering care, physicians should be attuned to these challenges for comprehensive patient care. 

2. Build resilience for the lifelong journey 

Transplant recipients will undergo changes post-transplant that can be difficult to accept. Dr. Gragossian says, “It’s going to be hard to get 100% back to the person you were before your transplant, and as a patient, one of the things that helped me the most was coming to terms with the fact that there is only so much that I can change.” Patients can benefit from this reminder from their care team to help them understand that “despite not being able to do what they previously could, the new normal is still great.”

3. Provide clarity and support for lifestyle changes  

New needs, such as household precautions, changes in diet, and travel considerations may be overlooked by the care team following transplant procedures. Dr. Gragossian notes transplantation requires new medications that compromise the immune system. Transplant recipients must be cautious with certain foods, such as grapefruits and pomegranates, to avoid interactions with certain medications. Additionally, some medications that elevate potassium levels – so patients can only eat traditionally healthy foods such as spinach and bananas in moderation. Support and thorough explanations about newly prescribed medications are crucial to ensure patients know how to use them. Additionally, providing them with solutions for managing their new lifestyle changes is critical. Dr. Gragossian recommends creating an emergency plan for unexpected events.  Dr. Gragossian suggests four travel tips for transplant recipients:  

• Pack extra medications for at least 3 days.
• Bring a copy of your medical records.
• Tell your transplant team that you’re traveling.
• Be prepared with contact information for the transplant center and local pharmacy at your destination.

4. Enter each appointment with empathy and understanding 

Navigating doctor appointments as a transplant recipient can be daunting. Dr. Gragossian says, “I try to remind [my physician colleagues] that when you’re seeing a transplant recipient, you’re probably the 10th doctor that they’ve seen that week and sometimes it could just get a little difficult, and stressful seeing so many health care professionals in such a small amount of time. I also, on the other end, tell transplant recipients sometimes if they go to a doctor who’s not as mindful, it’s only because they’re not used to seeing transplant recipients. There aren’t that many of us. So it’s important for everybody to just take a walk in each other’s shoes and understand that it’s a very complicated space to be in.” In addition to showing empathy and understanding towards patients, physicians need to stay informed about the transplantation world to best serve their patients by showing attention to their condition.

5. Assist patients in finding peers to relate to 

As a young transplant recipient, Dr. Gragossian found a connection with other transplant recipients via social media through a supportive community through a Facebook support group for women in their 20s and 30s with heart transplants. Patients may not always know where to seek assistance and community, or even ask about it. However, questions about day-to-day life and emotional burdens that remain unanswered in the medical space can be discussed in support networks. A recommendation from the care team can encourage a transplant recipient to find and trust a community of peers for social and emotional support.

6. Support the vital role of caregivers

Dr. Gragossian also advocates for providing extra resources to families and caregivers during the transplantation process to ensure that they are informed and aware of what’s happening every step of the way.  She shared, “We also have to care more about the caregivers. This includes parents and professional caregivers together. I do think that my parents – who were my primary caregivers after my transplant – went through the most trouble. To this day they remember things that I don’t because I was sedated, or I was in a coma. There just weren’t enough resources for parents, caregivers, spouses, and anyone in general who needs help with things like this.” Physicians can contribute to this cause by providing guidance, resources, and encouragement for the patient’s support system.

For more information about the Pediatric and Rare Liver Diseases Council or to learn more about joining, please visit our webpage or email pedsrare@globalliver.org.