Watchful Waiting No More: A Patient's Case for Clinical Trials for MASH

Liver disease is no longer something happening quietly in the background. It is growing, evolving, and affecting more families every day. I know this firsthand.

The downside of “watchful waiting”

In 2005, I was diagnosed with fatty liver and was told, "Everyone has fat in their liver, it's no big deal." There was no urgency. No treatment plan. Just reassurance.

By 2009, everything had changed. I was extremely sick and felt horrible. What started as simple fatty liver had progressed to MASH-related cirrhosis by the age of 36.

There were no treatment medications. There were no real options. Just "watchful waiting."

By 2011, I was on disability, living with portal hypertension. By 2013, I developed hepatic encephalopathy. This is what "waiting" looked like for me. I watched and waited. While I was waiting, my children grew up. While I was waiting, I got sicker.

My retirement fund and 401k were depleted. Life kept moving forward, but I was still waiting for something that never came. That is the real human cost of "watchful waiting." It is not just time passing. It is disease progressing. It is lives changing in ways that cannot always be undone.

Why clinical trials for MASH matter

Clinical trials are how treatments become reality. For many years, liver patients had very few options to fight back. Over time, research began to build. MASH clinical trials were happening behind the scenes. Patients were participating, often without knowing if it would help them.

Now we are finally seeing that progress come to life. The first medication for MASH was approved in 2024. Additional therapies are emerging, including medications originally developed for weight management that are now showing benefit in liver disease.

These breakthroughs did not happen overnight. They happened because patients were willing to participate in clinical trials long before there was any guarantee of treatment. If I had understood that earlier, or even been given the chance, I may have been able to slow or even stop the progression of my disease.

That is why I am involved now.

The impact of clinical trials

We have already seen what clinical trials can do.

For years, hepatitis C was one of the leading causes of liver transplants in the United States. Patients often progressed to cirrhosis and liver failure with limited treatment options. But patients stepped forward and participated in clinical trials, even when outcomes were uncertain. Because of that, we now have therapies that can cure hepatitis C.¹

Today, hepatitis C is no longer the leading cause of liver transplants. Now we are seeing MASH and fatty liver disease take its place. So the question becomes, what is possible over the next 5 to 10 years if we fully engage in clinical trials for MASH now?²

Could we slow progression before cirrhosis develops? Could we prevent complications like portal hypertension or hepatic encephalopathy? Could we change the future so fewer people ever need a transplant?

We have already seen what is possible. Now we have to decide if we are willing to be part of what comes next.

Why patient voices must be included in clinical trials

Clinical trials are not always designed with real life in mind. Can a patient realistically commit to a long-term trial if they might be placed on a placebo while a treatment is already available? For many patients, the answer is no.

That does not mean they do not care. It means the design does not match the reality of living with a serious disease. We have to ask: How far are patients expected to travel? How often are visits required? Could care be brought closer to the patient instead of always requiring travel to a trial site?

If we want participation, clinical trials for MASH must become more realistic and more accessible. Patients need to be part of those conversations from the beginning.

Addressing historical distrust in medical research

It is also important to acknowledge why some patients hesitate. There is real historical harm that cannot be ignored, including the Tuskegee Syphilis Study. That history created deep and valid distrust in the medical system for many communities.³

Today, clinical trials are built differently. There are strong ethical protections, informed consent, and the ability to leave a study at any time. Patients are monitored closely, and their safety is the priority.

Rebuilding trust starts with honesty, transparency, and including patients in the process.

How to find clinical trials for MASH

If you are interested in learning more about clinical trials for MASH or considering participation, there are trusted resources available. The ClinicalTrials.gov website allows you to search by condition, location, and eligibility. You can enter terms like MASH, cirrhosis, or fatty liver to find studies near you.

Organizations like the American Liver Foundation also provide education, support, and guidance. You can also speak directly with your hepatologist or liver specialist, as many medical centers are connected to ongoing research.

You do not have to navigate this alone.

Moving forward together

At one time, I was told to wait. To watch. To come back when things got worse, and they did. But today, I am no longer waiting. I am living my life and choosing to be part of what comes next.

Clinical trials are not just about science. They are about people. Real people. Real lives. When patients are included from the beginning, we do more than move research forward. We change what is possible.

Patients deserve more than "watchful waiting." They deserve options, access, and a voice in their future. Because the future of liver care will not be built by waiting. It will be built by patients who choose to participate in clinical trials for MASH — and what comes next.