1 million people every year

This ancient disease still kills 1 million people every year

A new generation of drugs promised salvation from hepatitis B and C. What went wrong?

by Dylan Scott

More than a decade ago, scientists achieved a historic breakthrough: They found a first-ever cure for hepatitis C, one of two related liver diseases that, combined, take more than a million lives every year.

In 2016, just three years after the antiviral drug Sovaldi received FDA approval, the World Health Organization (WHO) set the audacious goal of eliminating the two most common versions of viral hepatitis, B and C. The benchmark was, by 2030, to reduce new infections by 90 percent and deaths by 65 percent. The year before that goal was set, 1.3 million people died from hepatitis B and C.

Much of that optimism behind that goal has now evaporated. After a brief dip, the number of hepatitis deaths worldwide has been rising again — from 1.1 million in 2019 to 1.3 million in 2022, according to WHO. New infections are down somewhat over the same period, from 3 million to 2.2 million, but it has not been enough to turn the tide on fatalities. About 6,000 people are still being diagnosed with hepatitis B or C every day, and more than 3,500 people die daily from these infections.

Chari Cohen, now the president of the Hepatitis B Foundation, which advocates for investments in research and treatment for the disease, started her career researching the disease around the turn of the century. “Twenty-five years later, I thought we’d be in a better place,” she told me recently.

The main hurdles to stamping out these diseases, especially in Africa and South Asia where the burden is highest, include under-resourced health systems and lingering stigma against patients who contract hepatitis. And while hepatitis C has been solved by science, a clinical solution to the deadlier hepatitis B remains elusive. The prognosis for other long-time public health challenges is improving with new treatments, but the world will fall far short of its 2030 goals for slowing hepatitis.

“We are nowhere near the ability to do that. Unfortunately, we are gonna fall very short of that target,” Andrea Cox, who studies hepatitis at Johns Hopkins University, told me. “If the current trends continue, by the year 2040 the number of people dying of hepatitis B and C will exceed the number of people dying globally of HIV, [tuberculosis], and malaria combined.”

Hepatitis B and C have proven hard to stamp out

Hepatitis is a viral infection of the liver, causing chronic inflammation that can lead to cirrhosis, liver cancer, and eventually death over time.

The B and C variants spread through contact with bodily fluids; there are also versions that result from alcohol use and autoimmune disorders. In developing countries, people often become infected with hepatitis at a young age through exposure to infected blood, and more serious complications develop years later. In rich and poor countries alike, hepatitis can also spread through the sharing of needles for intravenous drug use and through sexual contact.

Hepatitis B integrates into the host’s DNA, which makes it more difficult for the body’s immune system to find and eliminate all of it. With hepatitis C, the new generation of cures that debuted with Sovaldi in 2013 was able to activate the human immune system to eliminate the virus entirely when used in combination with other existing drugs. Hepatitis B has so far proved resistant to a similar approach. The fact that few animals naturally develop a hepatitis infection has also slowed down research, Cohen said.

Today, hepatitis B is the more pernicious disease: It is responsible for most of all hepatitis deaths (87 percent) and more than half of the new infections globally. In recent years, treatments such as tenofovir have been proven capable of allowing people to live longer, more normal lives after a diagnosis and an effective infant vaccine is available to prevent infections in the first place.

The availability of both antiviral medications and vaccines means we have the tools to significantly reduce hepatitis’s damage. How can we be losing ground instead?

Why the world’s goal of eliminating hepatitis is slipping away

Beyond biology, the fight against hepatitis is up against two distinct challenges.

First, the disease is particularly prevalent in developing countries where the local health system may be ill-equipped to perform the kind of prevention, surveillance, and treatment necessary to bring these diseases under control. In Africa, vaccine uptake is particularly low; in Asia, antivirals are not as easily available as experts would like.

Diagnosing hepatitis is notoriously difficult, as it can have few symptoms until the damage to liver functions becomes more severe. Only an estimated 13 percent of people living with chronic hepatitis B worldwide had been diagnosed by the end of 2022, and, as a result, only 3 percent have received the available antivirals. For hepatitis C, an estimated 36 percent of cases had been diagnosed between 2015 and 2022 and only 20 percent of people had received the combination medication that cures the disease.

More than 60 percent of new hepatitis B infections occur in Africa and yet only 18 percent of the continent’s newborns receive the vaccine that effectively eliminates the risk of infection. Less than half of infants worldwide received the hepatitis B vaccine in 2022, according to the WHO estimates. It will require a more aggressive public health campaign, with better education and an increased capacity to get doses out in the field, to improve those figures.

Developing countries are already facing a variety of health problems, of which hepatitis is only one. While they have been focused on getting malaria or mpox or dengue under control, that has left limited resources for yet another disease — and one that is heavily stigmatized.

Some of the countries that are most affected by hepatitis struggle to acquire the medical tools to combat the disease, according to WHO. Even though hepatitis B medications should be available for just a few dollars per dose and the hepatitis C cures can be had for $60 or so, most of the 25 nations that bear the biggest hepatitis burden are failing to procure those medicines at those low prices, reducing their overall supply.

Prejudices against people with hepatitis, both personal and institutional, are also the result of its association with drug use and sex. In some of the most affected countries, people can face officially sanctioned discrimination, losing their job or being denied an immigration visa or admission to school.

That stigma reduces the willingness of clinicians and government officials to be more proactive about trying to control the disease. It also reduces the willingness of patients to seek out a test if they are worried about symptoms. If we don’t know who has hepatitis B or C, we can’t put these effective drugs to use.

​​“If a family is known to have hepatitis B in many areas of the world, they really are shunned,” Cohen said. “I wouldn’t want to be tested if I lived in a country and I knew that if I tested positive, I was going to lose my job.”

There are some signs of the stigma breaking, of more people speaking out about their experiences with hepatitis, especially in developed countries like the US. But breaking such a long-held bias is difficult. And until the hepatitis community can mobilize a political movement that public officials can no longer ignore, the dream of eradicating hepatitis could keep slipping away.

“I kind of felt that after 25 years, I wouldn’t have to constantly argue about prioritizing. I figured it would be a no-­brainer,” Cohen said. “But the communities that are most impacted by hepatitis B are the disenfranchised communities, the communities that don’t typically have a political voice. They don’t have political strength. And when you don’t demand action, you don’t get it.”