‘Change the HDV narrative’: A call to heighten awareness, prioritize early detection

As you read these words, you may be learning for the first time about hepatitis delta virus — a lesser-known type of hepatitis that is potentially life-threatening.

For many, the first encounter with HDV is when they receive the diagnosis; often a staggering blow that changes their lives forever. As a hepatologist, I witness this devastation firsthand when I deliver the news to my patients. By the time patients receive a diagnosis, many face the news that their condition has progressed to the point of advanced liver disease.

The unfortunate truth is that the world has let HDV exist silently. This is why I’m calling on the medical community to take steps to change the story of HDV on a larger scale, as we have with other serious viral diseases like hepatitis B virus, hepatitis C virus and HIV.

A ‘unique, inconspicuous’ virus

Most people living with HDV are active young adults, raising families and pursuing careers. When they learn they have HDV, the news often comes too late. The virus is already wreaking havoc on their liver.

These patients face a grim reality that includes a rapid trajectory toward impaired liver function or cirrhosis, liver cancer and liver-related death without liver transplantation. Many of my patients are shocked to learn they need a new liver at the time they are diagnosed with HDV.

HDV sneaks up on far too many people. It is a unique, inconspicuous virus that requires HBV to replicate. When patients have HDV and chronic HBV coinfection — often described as superinfection — the outcomes are significantly more severe than with chronic HBV alone.

It is estimated that at least 12 million people are living with chronic HDV. Most of them have no idea they have HDV because they are never tested for the virus. Testing for HDV is a simple blood test but it is not as routine as it should be. We know most people who could be at risk for infection are never tested. Because the disease is overlooked, even in people who already know they have HBV, there are likely many more due to underdiagnosis.

We can and must change the HDV narrative by increasing awareness and doing the work to identify infections earlier so we can improve care for millions of patients who, today, have little hope.

Benefits of early screening, diagnosis

Historically, guidelines only recommended HDV screening for HBV patients at high risk for coinfection. This selective screening has failed to reveal the full prevalence of the disease. The recently updated EASL guidelines emphasize a pressing need for universal screening of HDV in anyone infected with HBV. Unfortunately, not all guidelines have been this proactive, though several are actively in the process of being updated.

In addition to identifying patients, a more informed understanding of the incidence of HDV can illustrate how urgently we need effective treatments. HCV is a great example of how all aspects of the care cascade changed once highly effective therapy became available. Now, HCV screening is recommended for all adults, and established pathways exist to link those who are infected to curative therapy.

More rigorous early screening and diagnosis of HDV can build the case for the investment in developing the treatments we need — and demonstrate a commitment to the health of this underserved patient group.

‘We must take proactive steps together’

Now is the time to change the HDV narrative by advocating for proactive screening. HDV is silent but only because we have been.

We can change that with some decisive actions: One, policymakers and health systems should adopt the most recent WHO recommendation, which calls for automatic testing of HDV in any person who tests positive for HBV. And two, HDV should be made a nationally notifiable condition in the U.S., requiring HDV cases be reported to local or state health departments.

These steps can help us — and patients — identify the threat sooner and make more informed decisions toward a future of better care.

This kind of information is also vital to ongoing clinical development programs, like the ongoing phase 2 clinical study that Vir Biotechnology is conducting with an investigational HDV treatment that could potentially bring much-needed hope to those grappling with this insidious virus. I believe that any progress we make brings us closer to more treatments for all patients in need.

For every person facing a heartbreaking HDV diagnosis — and for those unaware of their imminent battle — we must take proactive steps together. Greater awareness, proactive screening and diagnosis, and innovative treatments can lead us to a future filled with renewed hope.

For more information:

Nancy S. Reau, MD, FAASLD, AGAF, is the Richard B. Capps Chair of Hepatology, associate director of solid organ transplantation and section chief of hepatology at Rush University. She can be reached at nancy_reau@rush.edu.