Terri’s Story

When my doctor told me that I had fatty liver disease in 2015, the communication was that it was no big deal. In 2016, I was diagnosed with lupus then pancreatitis.  Eventually, the pain, discomfort and fatigue from gallstones led me to an elective gallbladder surgery in 2017. During the surgery, my well-meaning surgeon found my liver to be nodular and decided to biopsy three separate spots while in the process of removing my gallbladder. What my surgeon did not know is how that biopsy would trigger a series of complications for my fragile liver. 

The biopsy, taking samples from my liver, triggered a series of events that for me became life-threatening, leading first to ascites, a condition that occurs when fluid collects in spaces in your belly.  A week later I was holding 40 pounds of fluid. The biopsy showed cirrhosis covering my liver caused by a condition called nonalcoholic steatohepatitis (NASH), now referred to as metabolic dysfunction-associated steatohepatitis (MASH). Before the biopsy, my liver cirrhosis was asymptomatic, known as compensated cirrhosis. After the biopsy, I had decompensated cirrhosis. I was changing clothes 6 times a day and soaking through towels with all the fluid. I had hepatic encephalopathy, a form of brain fog that often accompanies liver disease. I was fully symptomatic. 

In 2018, I was diagnosed with liver cancer. Thankfully by then I was a self-advocate and an educated patient. I worked with my doctors to ensure that my tumors were treated with localized therapies to preserve liver transplant as a future option. In 2022, I received a transplanted liver. 

Until my diagnosis, I was unaware of liver cirrhosis unrelated to alcohol. My doctors had given me no warning that my fatty liver could wreak such havoc. Of course now I know that NASH/MASH is the fastest-growing cause of cirrhosis, liver cancer, and liver transplant. 

I am grateful to be part of the Global Liver Institute’s Liver Action Network and Fatty Liver Disease Council, where stories like mine can drive efforts to improve public policies for patients with liver disease and liver cancer. When I was diagnosed, there was no treatment for NASH/MASH. Today, treatment is available – if you can get it. 

While most insurers are allowing doctors to follow clinical guidelines, the Department of Veterans Affairs (VA) is dictating doctors do what was done to me. The VA only recognizes a NASH/MASH diagnosis with biopsy instead of allowing for diagnosis with a noninvasive imaging technology. 

If a handyman needs a Phillips-head screwdriver but only has a flathead in the toolbox, that screw is going to be either damaged or the project left unfixed. Doctors use the best tools at their disposal and that they know how to use, following clinical guidelines developed by their professional societies. Most genuinely want to do no harm and care about their patients. But for patients like me, a biopsy is like using a hammer on glass. When the VA ignores clinical guidelines and instead gives doctors a toolkit missing the tools best suited for the job, veterans will either take the risk or go without treatment. 

I hope that the VA hears and appreciates my story. I could have avoided so much pain and trauma if only my diagnosis had come from a noninvasive image, as opposed to a biopsy. Yet, the VA’s Criteria for Use for NASH/MASH medication calls for a diagnosis from biopsy and tells veterans to delay care for 6 months after engaging in “lifestyle interventions” before allowing access to the only medication currently marketed for NASH/MASH. This is a progressive condition that only gets worse without treatment over time. Those serving our country deserve better.  

As a young person, I was a bit of an adrenaline junkie, with a penchant for roller coasters. This year, I am preparing to celebrate my 61st birthday and the second anniversary of my transplant by skydiving, a long-held bucket list item. I plan to do a solo jump in five years, marking my cancer-free status. 

Throughout my journey, I have and will hold on to my gratitude for all those that have done their best, using the best tools they knew at the time, to help me along the way. And I will use my voice to advocate giving doctors – and the patients and veterans that depend on them – an updated toolkit for a smoother journey to wellness.

Why Hepatitis C Treatment Matters: Improving Patient Outcomes Beyond Liver Health

With cure rates exceeding 95% in most cases, DAAs have set a new standard for hepatitis C therapy. For healthcare providers, this means offering patients a highly effective treatment that is generally well-tolerated with minimal side effects. Achieving sustained virologic response (SVR)—defined as the absence of detectable hepatitis C virus in the blood 12 weeks or more after completing treatment—signifies the clinical cure of the infection. Beyond this, many patients experience notable improvements in their general health.

The PROP UP study was designed to provide real-world data on the impact of DAA therapy on patient-reported outcomes in a diverse hepatitis C patient population.

Conducted across 11 gastroenterology and hepatology practices in the U.S., the study enrolled 1,601 patients from 2015 to 2017, with over 95% retention. Participants were predominantly over the age of 55 (74%), 45% were female, and nearly half had cirrhosis at baseline. A significant proportion of patients also had multiple comorbidities, including mental health disturbances (35%) and substance use history (22%).

Patients were prescribed a variety of DAA regimens, primarily sofosbuvir-based combinations (83%), and were evaluated for PRO changes from pre-treatment (baseline) through 12 months post-treatment. The study showed that achieving SVR led to clinically meaningful improvements in key symptoms such as fatigue, sleep disturbance, and abdominal pain. A new HCV-specific measure called the HCV-PRO assessed the well-being and functional status of study participants with a 16-item survey measuring physical, emotional, social functioning, productivity, intimacy, and perception of quality of life; this measure also improved for those who achieved SVR.

These improvements were sustained up to 12 months. Patients with cirrhosis, with a MELD score ≥12, and between the ages of 35 to 55 reported the greatest gains in functional well-being, suggesting that DAA treatment may particularly benefit those with advanced liver disease. After achieving SVR, patients often experience improved control of conditions such as diabetes, high cholesterol, and hypertension. Curing HCV infection can reduce systemic inflammation, which may help with blood pressure, cholesterol levels, and blood sugar management. 

The study had several limitations. Patients were recruited at major academic research institutions, and non-English speakers and uninsured patients were excluded from the study, which severely limits generalizability to notable portions of the patient population infected with HCV. Data to calculate the patient-reported outcomes was self-reported by participants, which can compromise the validity of measurements. Additionally, the study did not consider concurrent interventions, such as mental health or substance use treatments, which could have influenced outcomes. These limitations highlight the need for further research to validate findings across representative patient populations and clinical settings.

Screening for hepatitis C in your practice can provide significant benefits to patients. However, it’s essential to manage treatment thoughtfully; if you are unable to provide treatment in your practice, it’s important to keep the following in mind when partnering with specialists:

1. Access to Treatment: Recognize that many patients with hepatitis C often face barriers to accessing DAA therapy. These barriers may include a lack of healthcare coverage, financial challenges, or geographic limitations, particularly in underserved or stigmatized communities. Additionally, those experiencing homelessness or engaging in injection drug use may face stigma and discrimination within healthcare settings, further complicating their ability to receive consistent care. Social determinants of health, such as inadequate access to transportation, unstable housing, caregiving responsibilities, and food insecurity, can hinder a patient’s ability to adhere to treatment. 
2. Comprehensive Support: Tailored mHealth, such as text reminders and counseling, has been shown to improve screening adherence in high-risk populations and could similarly help hepatitis C patients stay on track with treatment. Work to connect patients to financial assistance programs, community resources, or alternative care models when needed. Most Medicaid and private insurance plans cover the treatment, and robust patient assistance programs are available to help cover the costs of treatment; help link patients to these resources, as this cost has come down over time.
3. Side Effects: While DAAs are well-tolerated, some patients may experience mild side effects such as fatigue or headaches. Monitor these symptoms and offer management strategies to ensure treatment adherence.
4. Screening and Early Detection: The earlier the diagnosis, the better the outcome. Screening at-risk populations – such as people born before 1965, those with a history of intravenous drug use, or others with evidence of infection – enables timely intervention, which can prevent long-term complications.
5. Preventing Complications: DAA therapy can stop the progression of cirrhosis and decrease risk of  liver cancer – a significant difference in patients’ long-term health. By treating hepatitis C early, you can reduce the risk of severe complications.

By prioritizing DAA therapy in your hepatitis C management, you can profoundly impact your patients’ overall health. This proactive approach targets liver disease and helps manage comorbid conditions, improving your patient’s quality of life and reducing their risk of future complications.

The statements and opinions presented in this blog post are solely the responsibility of the author(s) and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or the Methodology Committee.