Hepatitis C is a viral infection that causes inflammation of the liver. If left untreated, it can develop into cirrhosis and liver cancer. You may not know much about it, and we’re going to delve into why.

Liver failure as a result of hepatitis C is one of the biggest reasons for liver transplants in the United States, according to the Centers for Disease Control and Prevention (CDC). If you suspect hep C may be lurking, getting treatment ASAP is key.

It sounds scary, we know, but treatments for the disease have come a long way in recent years, leading to cure rates as high as 96 percent in people who catch it early. Now that’s an incentive to get treatment… or so you’d think.

The World Health Organization (WHO) has set a goal to eliminate hepatitis C by 2030. Getting to that massive milestone won’t be easy, though. Stigmas against hepatitis C can cause people to avoid getting tested or even talking about it. That’s a real bummer, since talking about it is exactly what we need to do to stifle that stigma.

“We know that stigma around hepatitis C leads to a lack of effective or consistent communication, resulting in confusion about risks and options for treatment, especially among groups being reached less effectively by programs in the first place,” Kate Goertzen, deputy director of learning and engagement at the National Harm Reduction Coalition, told our sister site Healthline.

We spoke with some activists about the stigmas they’re fighting and what needs to happen to change the narrative around this completely treatable disease.

In the dark about hep C

More than half of people living with hepatitis C have no clue they have it, according to the Department of Health & Human Services (HHS). Because the virus often causes no distinct symptoms and people don’t think they’re at risk, many never get tested for hepatitis C.

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“Prior to the 1990s, blood transfusions were not screened for hepatitis. There are a large number of baby boomers who contracted hepatitis C through blood transfusions, and many didn’t find out until the last few years,” Adrienne Simmons, PharmD, policy manager at the National Viral Hepatitis Roundtable, a program from the Hepatitis Education Project, told Healthline.

According to the CDC, most hepatitis C infections are now caused by sharing needles and syringes when injecting drugs.

“The primary driver of today’s hepatitis C cases are a result of the opioid crisis, which brings a lot of stigmas,” says Simmons. Those affected by this crisis aren’t often first in line to talk about it, so it flies under the radar.

But drug use isn’t the only way hepatitis C can spread. According to the CDC, around 6 percent of babies whose moms have hepatitis C also get the disease.

It’s also possible to contract hepatitis C by getting a tattoo or piercing with a nonsterile instrument or sharing personal items (like nail clippers, razors, or toothbrushes) that have been exposed to the blood of someone who has the disease. This is why it’s key to make sure you’re getting pierced or inked in a safe and sterile environment.

But when a disease is commonly associated with drug use, people may want to go full head-in-the-sand about it and avoid testing. That means fewer people know they have hepatitis C, treatment is delayed… you see where this can lead.

“Ultimately, this means folks may not understand their risk, may not know who to talk to about ways to lessen harm, and may be afraid to ask harder questions,” says Goertzen.

Treating hepatitis C is a lot easier than it used to be. Direct-acting antiviral medications, often delivered through just one pill a day, can clear the virus from most people in about 12 weeks. Plus, the side effects are generally mild. Seems like a no-brainer, right?

Accessing hepatitis C treatment, which can be spendy, is a whole other thing in itself. A 2018 study found that more than a third of people who had received a prescription for direct-acting antiviral medications for hepatitis C were denied treatment by their private insurance, Medicaid, or Medicare.

Many state and private health insurance programs have put up roadblocks like requiring people with hepatitis C to stop drug and alcohol use for months before their treatment will be covered. That’s one surefire way to keep people from getting the care they need pronto.

Policies like these “perpetuate existing stigma in typically our most vulnerable communities,” says Simmons.

“The argument is that a person using drugs is less likely to be adherent to a treatment regimen, but we have studies that show people who use drugs have just as high cure rates for hepatitis C as people who don’t use drugs,” she says.

Even if someone’s health insurance doesn’t require them to avoid drug use before starting hepatitis C treatment, they could encounter even more strict substance use rules from their doctor before the doctor is willing to offer hepatitis C treatment.

“We’ve heard from some patients that their physician wouldn’t prescribe treatment until they’ve been sober for 6 months,” explains Simmons. “That discourages people from wanting to seek care.”

Advocates say that stigmas against drug use and hepatitis C are making it unlikely that the United States will meet the WHO’s goal of eliminating the disease by the end of the decade.

“Stigma goes hand in hand with insufficient funding, political will, and policy barriers as roadblocks to this progress,” says Goertzen.

In 2017, the CDC’s budget included $33.9 million for the prevention of all viral hepatitis (yep, not just hepatitis C), compared with about $786 million for HIV and AIDs prevention and research — even though hepatitis has a much larger prevalence than HIV in the United States.

“For years, there was no one at HHS who was assigned to hepatitis. We finally got that, but federal funding for hepatitis is still really minuscule. It’s just not being prioritized,” says Lorren Sandt, executive director of the Caring Ambassadors Program. “It’s always been stigmatized and seen as someone else’s disease.”

Simmons estimates that the CDC would need between 3 and 10 times its current funding levels for hepatitis in order to fully nix the disease.

This lack of dedicated resources, combined with discrimination against people who use drugs, forms a barrier to creating new syringe services programs (also known as needle exchange programs), which are considered one of the best ways to help prevent and eliminate hepatitis C.

“We badly need increases in funding in state budgets for programs engaging in hepatitis C prevention, testing, and care and for syringe services programs overall,” says Goertzen.

The CDC released new guidelines in April 2020 that said all adults, as well as all pregnant people during every pregnancy, should be screened for hepatitis C, but many people aren’t yet aware of these recommendations. And if folks are afraid to talk about it all, they may never know.

Encouraging your community and loved ones to get tested for the virus is key to both reducing stigmas around hepatitis C and helping get rid of the disease, Sandt says.

“Can you eliminate it within your family or within your friends? If you’re a doctor, can you eliminate it in just your practice? We all want worldwide elimination, which seems so large and not anything you can tackle, but if you take it down to the personal level of micro-elimination, you can do it,” she explains.

“I had three family members with hepatitis C, all cured now. Anyone can do that, but it takes talking about it and it takes addressing it,” Sandt adds.

Treatments for hepatitis C can work wonders in just a few months, helping avoid big-time complications that could eventually lead to the need for a liver transplant.

But stigmas cause people to avoid talking about it, which leads to less testing and treatment of hepatitis C and less awareness of those evidence-based prevention strategies we heard about.

“No one should have to live with hepatitis C, and no one should be alone in their journey,” says Sandt. “We need to get the message out there that treatment works, and it doesn’t matter how you got the disease — just get rid of it.”