During my five years as a doctor in Los Angeles County’s jail system, I personally saw hundreds of patients with hepatitis C who were not being treated for the potentially deadly but curable disease. While hepatitis C treatment improved incrementally during my tenure, the system continues to fall woefully short of the sort of concerted effort that could dramatically reduce the toll of the infection within and beyond the jails.
Hepatitis C, a viral, blood-borne liver disease, is very common in the jails. More than a third of inmates tested are positive. That suggests the number of people living with the virus in the nation’s largest jail system is likely in the thousands.
Hepatitis C is new enough to medical science that until the 1980s, it had yet to be formally identified and was known only as “non-A, non-B hepatitis.” Thanks to the marvels of modern molecular biology, it’s now well described, and the available medicines cure almost every patient who takes them.
Untreated hepatitis C nevertheless continues to claim the lives of about 14,000 Americans every year, a higher toll than that of HIV. Because these deaths are preventable, the Centers for Disease Control and Prevention recommends universal screening of adults for the infection.
In this context, one might expect medical providers in jail to test for the disease broadly and treat it promptly. Monitoring and managing contagion is important in any correctional medical system, and it’s routine in ours for other diseases, such as tuberculosis and COVID-19.
Unfortunately, this wasn’t what I encountered in practice. All those taken into custody at the jail undergo a medical screening. But it’s usually cursory and doesn’t include an offer to screen for hepatitis C.
When I started treating inmates in 2018, doctors rarely screened for the disease partly because known cases were almost never treated. The protocol was to consider treating patients only if their disease had progressed to a state of advanced liver fibrosis.
What’s more, getting medication for a patient meant arranging a special police escort for an appointment at the county hospital and then waiting several more weeks for the antiviral pills to be delivered. The entire process took many months and generally discouraged treatment.
I believe the deeper reason for the reluctance to treat hepatitis C in the jails has to do with inertia and finances. The medicines are under patent and expensive.
Nonetheless, the cost has come down rapidly, and poorer states and countries such as Louisiana and Egypt have found it in their budgets to procure the drugs and use them widely. What’s more, treating the disease is cost-effective given the resulting reduction in cirrhosis, liver cancer, heart disease, kidney disease, arthritis and diabetes. In the long run, decreasing the spread of infection will save both dollars and lives.
The county jail system has made some significant strides in recent years. Patients now can qualify for hepatitis C treatment without liver fibrosis. One of the two medications needed to treat the disease has been added to the system’s list of approved drugs, eliminating the need for an outside medical appointment.
Even with these improvements, however, I saw the number of patients being treated increase from close to none to dozens as of last year in a system where hepatitis C cases probably number in the thousands. Screening remains haphazard, and most of the clinicians on staff still are not allowed to initiate treatment even though the drugs are easy to use.
Meanwhile, illicit intravenous drug use and unsterile tattooing remain ubiquitous among inmates, helping the virus readily find new hosts. These conditions mean that the hepatitis C virus continues to thrive behind bars, more likely to spread in L.A.’s jails than be cured there — a shameful state of affairs in 2024.
Once in a generation, a major pathogen finds itself on history’s chopping block. My parents remember the polio scares of the 1940s and ’50s. Smallpox plagued humankind for millennia before it was eradicated in the 1970s. Now it should be hepatitis C’s turn.
Any campaign to eliminate hepatitis C from Los Angeles would be wise to concentrate on our jails. A strategic, coordinated plan of testing and treatment would lower infection levels rapidly in months, reducing disease inside and outside the jails. The continuing failure to undertake such an effort is deadly and unconscionable.
Mark Bunin Benor is a family physician who worked in the Los Angeles County jail system from 2018 to 2023.
As evening fell in her Glendale apartment, Dara Bruce fed her pet rats George and Fred, poured herself a glass of water, and dialed a complete stranger to discuss the dangerous virus detected in his blood.
“Is now a good time to talk?” she asked.
Bruce is a volunteer in the enduring fight against hepatitis C. The stealthy killer claims the lives of roughly 14,000 Americans each year, even though it can be readily cured with a few months of pills. Many people have no idea they are infected, going years without symptoms before the blood-borne virus devastates the liver.
Yet public funding to combat hepatitis C is so scant that in Los Angeles County — an area more populous than many states — the crucial work of contacting those who are infected is being done by unpaid emissaries like Bruce through a fledgling initiative called Project Connect.
A partnership between USC and the county public health department, Project Connect trains volunteers to call people who have tested positive for the virus to make sure they know their results and encourage them to get the medication they need.
Sitting behind her desk lined with anatomy textbooks — the artifacts of the master’s degree in integrative anatomical sciences that she had just earned from USC — Bruce double checked that she had the right person before giving him the news. His reaction made her brighten.
“Oh, beautiful!” she exclaimed after the man told her he had been treated. “I love to hear that.”
It isn’t something she hears a lot. Among those contacted by Project Connect through mid-January, less than a third had been treated. That echoes the dismal statistics across the U.S., where only about a third of people who test positive start treatment within a year.
Across the country, the number of new hepatitis C infections reported annually more than doubled between 2014 and 2021, topping 5,000. That same year, more than 107,000 longtime infections were newly discovered, according to federal data.
Some untreated infections may clear up on their own, but many will endure, leaving people at risk of illness and death. People with long-term infections can develop cancer or end up with liver scarring so grave they need an organ transplant.
Experts say the high number of untreated patients is tied to obstacles such as doctors unnecessarily shunting patients to specialists and insurers making it difficult to obtain the pills, which can cost upward of $20,000.Many don’t realize they’re infected: One in six people reached by Project Connect volunteers didn’t know their test results.
The virus has taken an especially heavy toll on people who are often disconnected from health systems, including those who inject drugs or are unhoused. And many at-risk people are unaware of the threat, including baby boomers who were infected long before the virus had been identified.
Having an effective hepatitis C medication on the market isn’t enough to solve the problem, said Dr. Jeffrey Klausner, an infectious disease specialist at USC. It has to reach the patients who need it.
“You need people to be aware of their infection. You need people to be seen by a treating provider. You need people to get the medications prescribed,” he said.
The problem is that “this is a disease without resources,” said Dr. Prabhu Gounder, medical director of the viral hepatitis unit at the L.A. County Department of Public Health.
That’s a common complaint across the country. In a national survey conducted by hepatitis organizations, only 3% of local jurisdictions said they could make progress toward hepatitis elimination goals at the current level of federal funding.
“It’s incredibly dangerously underfunded,” said Anne Donnelly, a member of the California Hepatitis Alliance who works with the San Francisco AIDS Foundation.
The Biden administration has been pushing for billions of dollars to wipe out hepatitis C, arguing that the investment would pay off in the long run as Medicaid recipients avoid liver ailments that require costly care. An analysis released by the National Bureau of Economic Research found that the initiative would save the federal government more than $13 billion over a decade, exceeding its upfront costs.
Nobody in public health is unaware of “what needs to be done to address hepatitis C,” said Sonia Canzater, associate director of the Infectious Diseases Initiative at Georgetown’s O’Neill Institute for National and Global Health Law. “The problem has always been the resourcing and getting the political and the social will behind it.”
In Los Angeles, Gounder said budget limitations have made it impossible to roll out a sweeping program for people with hepatitis C.
But “what if we were to just give them a call and make sure that they’re aware of their infection? Provide some education?” Gounder wondered. “That alone is not going to solve this epidemic. But we thought that was a low-resource thing that we could do to try to move the needle.”
The result was Project Connect. It began in April, tasking volunteers with reaching roughly 3,000 county residents, and is now adding another 3,000 cases to its rolls.
Klausner said the project relies on the part-time efforts of five university staffers and anywhere from six to 12 student volunteers, many of whom need to log hours of field experience for graduate degrees in public health.
The public health department taught them the rules about patient privacy along with some basics on the virus and its treatment. The USC volunteers now devote at least four hours each a week to and texting people about their test results, relying on reports that come into the county after patients test positive.
Learning about the ongoing toll of the virus “fired me up,” said Bruce, a 36-year-old former aerial arts performer.
Dara Bruce poses for a portrait in her home office inj Glendale on Jan. 11, 2024.
(Jason Armond / Los Angeles Times)
Her interactions with hepatitis C patients left her struck by “how prevalent it seemed to be across people from all different walks of life” — but also by the vast disparities in what had happened to people after they learned about their infections. “There were such different stories.”
Some people told her they wanted treatment but had no way to get to a doctor or couldn’t take time off work. There were also patients who didn’t feel a sense of urgency to get the pills, since it can take years for serious health problems to develop.
To them, it “just didn’t really seem like something they needed to get taken care of right now,” Bruce said.
More than 70% of the patients on volunteers’ lists can’t be reached, often because the phone numbers in their files were wrong. The team doesn’t have the resources to track people down in government databases or on the streets, the way that public health departments do for some other illnesses.
L.A. County’s public health department is not spending any of its own money on Project Connect, relying entirely on the USC volunteers and some support from county employees. Hiring a small team to tackle such work would cost roughly $250,000, Gounder estimated — not a massive sum but “not feasible with the budget we have.”
His viral hepatitis team gets roughly $1.2 million in grant funding from the federal Centers for Disease Control and Prevention and the California Department of Public Health, but that must cover costs for hepatitis A and B as well as C.
In comparison, the county receives roughly $97 million in state and federal grants to address HIV. Gounder said funding for hepatitis C has been so scant that he cannot determine the exact number of cases in the county, but statewide estimates suggest it rivals or exceeds the number of HIV cases.
Both diseases can be deadly and put other people at risk of infection if left untreated. But the push to get antiretroviral treatment to HIV patients was bolstered by “an incredibly active community” that included wealthy people, said Dana Goldman, dean of the USC Sol Price School of Public Policy.
The same kind of mobilization hasn’t happened for patients with hepatitis C, he said, but “that doesn’t mean they’re any less deserving.”
Relying on volunteers has its limits: Among other things, it means the work can be interrupted during university breaks or exam periods, Klausener said. And phone calls only go so far: Among the untreated patients Project Connect was able to follow up with after three months, only 20% had gotten the pills.
Klausner believes the county has a responsibility to fund paid staff. And he wants the outreach teams to be able to schedule people for treatment and assist them with transportation vouchers, child care or other aid — the “linkage to care” he said has been missing.
But Bruce said that even a phone call can be meaningful for those on the other end of the line. “This is about listening to people and their stories,” she said.
In her Glendale apartment, Bruce asked if the man on the phone had time for a few more questions. The answers would help officials get a clearer picture of who is getting treated and who is not.
“I’m glad you’re a success story for treatment,” she told him before wishing him good night.
Bruce called the next number, only to be hung up on. She called again and left a message with her phone number.
You have hepatitis C, a disease caused by a virus that’s contagious and attacks the liver. Maybe you know how you got it. Maybe you don’t.
Whatever the case, the virus could be just part of the problem. Now that the doctor has told you that you have hep C, get ready to battle a range of head-spinning emotions that often can be as difficult to deal with as the virus itself.
There are ways to calm your nerves and ease your mind.
What You’re Facing
Fear and anxiety: Most people with hepatitis C don’t have any symptoms. Even if you’ve had it for years, you may not have the fever, fatigue, nausea, vomiting, and other things that some folks with the virus have.
Still, doctors will tell you that hepatitis C is a serious disease that can cause lasting damage to the liver, including cancer and a scarring of the liver (cirrhosis). Hepatitis C is, in a word, scary.
“I think fear is probably the first thing: ‘What does it mean?’ ” says Lucinda K. Porter, RN, author of two books about her experience with hep C.
“If you don’t know anything about hepatitis C, and you go on the Internet — which a lot of people seem to go to before they go to their physicians — you might see a full variety of outcomes, including death. Or see that this is an infectious disease and get the fear you might infect someone else. That’s a huge fear.”
The fears keep coming:
Is it going to be debilitating?
Can you infect someone else?
Will you be able to work?
How are you going to pay for your treatment?
How are you going to take care of your family?
How are you going to pay the mortgage?
“Once you learn more, you find out that hep C doesn’t work like that,” says Porter, who works as a hepatitis C advocate, writing for hepmag.com and hcvadvocate.org. “If you find out about it in an early stage and get some good, solid information, you find out that those fears don’t usually get realized.”
Remember: In many cases, the medicines that your doctor prescribes can pretty much wipe the virus out of your body.
“There is nothing to be afraid of. No matter how you got the infection, now we have a group of different, good therapies that can get rid of this infection,” says Victor Machicao, MD, a gastroenterologist with McGovern Medical School at UTHealth-Houston.
“I usually tell [people] there’s a good chance that, you start taking the treatments, you’re going to start feeling better, and by the time that we complete the therapy, you’re going to feel almost like a new person.”
Embarrassment and shame: Hepatitis C gets spread through exposure to an infected person’s blood. That’s the only way. Often, that’s how intravenous drug users, sharing needles, spread the virus. Sometimes, it gets passed down through high-risk sex. Before 1992, when blood wasn’t screened for hepatitis C in the U.S., it often was passed along through transfusions and organ transplants, too.
Some of those activities — drug use and high-risk sex, especially — are what many people associate with hepatitis C. That thinking creates a stigma that makes people who have the disease not want to tell others about it.
“So many of [the people I treat] are those baby boomers who did have a brief period of experimentation with drug use. Or maybe they did use drugs for a year or two of their adolescence. But now, that’s like 30 years ago,” says Andrew Muir, MD, a hepatologist who is chief of the Division of Gastroenterology at Duke Clinical Research Institute in Durham, NC.
“Often, they’re not married to somebody that they knew back then … it’s embarrassing, then you’re worried about what that person is going to think of you, and then when you realize that there may be a chance that you’ve passed on the virus through sex. … All these things are spiraling around in their heads.”
Guilt: “There’s a lot of guilt, especially in someone who has a remote history of IV drug use, or got a tattoo at an unregulated parlor, or had a high-risk sexual encounter,” says Nancy Reau, MD, section chief of hepatology at Rush University Medical Center in Chicago.
People feel guilty about the possibility that they’ve infected others unknowingly. They feel guilty about putting loved ones in a situation that is often financially and emotionally costly. Sometimes, it can be too much for a person to handle.
Regret: People with the disease often beat themselves up for not making better choices when they contracted the virus.
“At that point, I tell every single one of my [folks] that there’s not a single one of us that wouldn’t go back and change a decision that we’ve made,” Reau says. “To some extent, looking back isn’t going to help us. We have to look forward.”
Anger: “Anger is not an uncommon one. Anger is one of those emotions that make us feel like we’re empowered,” says Porter, who got hepatitis C in 1988 through a blood transfusion.
For some, it comes from the fact that they had nothing to do with what gave them the virus.
“I didn’t react with anger because in my case, that blood transfusion saved my life. But other people … can feel quite angry, and they feel quite victimized by that. I find [this] one is probably the hardest to address. Sometimes I just acknowledge that they feel angry.”
Depression: The virus, the symptoms that may accompany it, all the emotions — it can be difficult to handle.
Muir says a common scenario, in his experience, is a drug user who addresses the problem of addiction, goes in for treatment, and just as things start looking better, finds out they have hepatitis C.
“I find a lot of them are really down on themselves: ‘I’m a bad person, I did this, I’m being punished for it.’ We really need to try to change the way they feel about that,” Muir says.
“I was a mess. I felt dirty. I was hard on myself,” says Stella Armstrong, a Las Vegas office manager who got the virus through drug use. Armstrong is now virus-free and is a hepatitis C advocate and member of the National Patient Advisory Committee for the American Liver Foundation. “I had to seek counseling. I had to see a psychiatrist. I was taking depression and anxiety medicine.”
How to Get Help
Talk to your medical team. Meet with your doctor and anyone else you might need (a hepatologist or pharmacist, for example). Get a plan. Follow treatment.
“You start there. Always,” Porter says.
Don’t underestimate the power of feeling physically better. It’s good for your mind, too.
Once again, the virus can disappear in many of those who have hepatitis C.
“People are surprised. They ask you, ‘Doctor, did you mean ‘cure’?” Machicao says. “They come to the office and say, ‘Doctor, that means I don’t have the infection anymore?’ I tell them, ‘For practical purposes, you’re cured.’ They are in total disbelief. It is amazing.”
“The success of being cured of hepatitis C is really powerful,” says Muir.
If you feel depression or anxiety, the National Institute of Mental Health suggests that you talk to your primary doctor or go to a psychologist or psychiatrist. Depression is a real illness and, even in the most severe cases, it’s treatable with medication or other means.
Get educated. Find trusted sites online. Ask your doctor questions. Know what the virus is all about. Separate fact from fiction.
“Education is how we start breaking down the stereotypes. How we find out we don’t need to be afraid anymore,” Porter says. “It can release the chains of anger.”
Find some support. It can help to talk with other people who have been through what you have. Your doctor can point you toward online groups filled with people who are going through the same process. In some places, you can meet with people in person. Social services through government agencies or hospitals can help, too.
“When you start to see other people who have a history of drug use, that regret and shame starts to diminish. ‘OK. I’m not a bad person. I can deal with this,’ ” Porter says.
“I’ve always been open and have discussed my addiction with drugs. I think it’s the best thing. We only stay as sick as our secrets,” Armstrong says. “It was better for me to share my story. It’s still the same thing. It’s still hepatitis C, and we have to get through it.”
Lean on family, friends, clergy, whomever it takes. Whether it’s someone else who has been through hepatitis C, or a spouse, a parent, a sibling, or your best friend — even if it’s a complete stranger — sometimes you just need a shoulder or a sympathetic ear. Search them out. Use them.
“No matter how much positive you can hear about it, you still have to go home, you still have to be at a point by yourself, thinking these bad thoughts and you’re worried and you’re scared and you’re scared of the unknown,” Armstrong says. “Those are the times you have to call somebody and talk to them.”
Take care of yourself. Once you get your medical plan in place, once you have your support in line, once you’re educated and know what you’re facing, taking a little “me” time is in order.
“Having a chronic illness is hard,” Reau says. “Start by looking at the things you can change easily.”
Eat well. Exercise. Get your sleep. Some people like to meditate. Nap if you need to nap. Make sure you’re around people you like. Enjoy a good book or a movie. All these can help you deal with the stress and emotions of hepatitis C.
“Even at my lowest point and when I was feeling really sick, you just gotta keep moving. You have no other choice,” Armstrong says. “You have to keep moving forward and treating yourself well.”
Patient advocate Rick Nash sometimes wears a T-shirt that reads, “My pre-existing condition is hepatitis C.” (It is also known as hep C or HCV.) He uses it to jumpstart conversations about the disease.
Nash thinks frank talk can help debunk myths and ease the stigma around hep C. But not everyone is ready or able to be so open. Whether to talk about your hep C diagnosis or not is up to you.
If you want to tell others about your status, there are some tactics that could help make the conversation go better.
Talking to an Intimate Partner
It’s important to be patient and open to any questions your partner may have. It’s likely they’ll want to know how you got hep C and whether they could have it too.
Such questions are natural. But often, they’re tough to answer.
Paul Bolter, community outreach and education manager at the American Liver Foundation in New York, explains why.
“There’s still a lot of stigma and shame around the disease. The first thing people think of is drug use or sexual transmission,” he says.
Even Nash writes that talking about hep C can feel like “you’re revealing a deadly secret.”
To get over the hurdles:
Explain that hep C is a virus that spreads through contact with an infected person’s blood. IV drug use is one way, but there are others. They include:
Needle stick
Blood transfusion
Organ transplant before 1992
Tattoo or body piercing equipment that’s not sterile can cause it too. Some people, like Nash, get the infection at birth.
Tell them hep C rarely spreads through sex. It’s a little more likely if you have rough sex, anal sex, or sex during an outbreak of a sexually transmitted infection (STI).
Discuss safer sex options, such as using a condom if you make love during a woman’s period or have sex that can cause bleeding.
Encourage your partner to get tested. Angelica Bedrosian, MSW, a prevention and outreach coordinator at the Hepatitis Education Project (HEP) in Seattle, says most adults should get a hep C test at least once. Anyone who injects drugs should have a test every 6 months, about the time it takes to build up antibodies to the virus.
“[Make sure they know] the test is simple and hep C is curable,” she says.
Talking to Your Family
Bedrosian says you don’t have to disclose your hep C status to your family unless you want to.
She explains that on its own, living with someone who has hep C isn’t risky. You just need to take a few precautions. Don’t share personal items that might have blood on them, like razors, toothbrushes, and nail clippers. If you live with children, store these items out of reach.
If you do decide to talk to your family:
Explain that hep C virus spreads in different ways. You don’t have to say how you got it.
Assure your family they can’t catch hep C from you, even if you hug, kiss, or share food or utensils.
Tell them that hep C is curable. If caught at an early stage, hep C is curable about 98% of the time, says Robert Brown Jr., MD, chief of gastroenterology and hepatology at New York’s Weill Cornell Department of Medicine.
Don’t be afraid to ask for your family’s love and support, as well.
Hep C Communication Among Minorities
African Americans and some native peoples have higher rates of hepatitis C than other groups. Yet too few know about the disease or get tested for it.
Brown says there are several reasons for this.
“Access to care is less and trust in the medical system is less,” he says. “Stigma is [also] a key problem. We need to reduce stigma to eliminate barriers to care.”
In Brown’s view, “The solution is to have less stigma and then more people could talk about it.” This is the reverse of Nash’s belief that more talk leads to less stigma.
Bedrosian falls somewhere in between. She thinks it works best if people learn how to talk about hep C. She points to HEP’s outreach programs. They include a peer-training model that describes how hep C spreads, how to prevent it, and how to educate others.
“This is how educational messages are best received, and how taboo is dismantled little by little,” she says.
Social and emotional support can make a big difference in your journey with hepatitis C. A good support system may boost your well-being and help you stay healthy.
Why Support Is Important With Hep C
With hep C, you may wonder what happens next. You may worry about how it will affect your health. You may feel isolated and unsure who you can talk to.
“Emotional support is hugely necessary,” says Dan Palmer, a 59-year-old singer/songwriter and video producer in Carson City, NV, who was diagnosed with hep C in his late 30s. After developing liver disease from hep C, Palmer had a liver transplant. In 2016, he was told he was cured.
“There’s still a lot of stigma about hep C. People may believe you’re a drug user and that drug use is the source of your infection. That makes it hard to talk about,” Palmer says.
Finding the right support can help you find answers to your questions, feel less alone, and take better care of your health.
You can build a support network with your friends and family, your doctors and medical team, and the hepatitis C community.
Family and Friends
Close friends and trusted family members may help you manage life with hep C.
“Family and friends can help you navigate through the process of finding the right care,” says Mindie Nguyen, MD, a hepatologist at Stanford University Medical Center in California. They can also help you stay on track with your medications and treatment.
You may talk to family and friends about your feelings and concerns. They may help with practical things like household chores, work-life balance, or financial issues. If you’re struggling with substance abuse or mental health issues, a family member or close friend may help you find treatment and support you along the way.
“Choosing who to share this aspect of your life with is important,” says Warren Hall, the American Liver Foundation’s national manager of support services. It may be best to limit it to people you trust will understand and support you. “Not everyone needs to know everything about us, and this is true regarding health matters,” Hall says.
Your Doctor and Other Professionals
Your medical team is part of your support system. Your primary care doctor, specialists, nurses, pharmacist, and other health care providers can address your questions and concerns and help you make decisions about your treatment.
Before each visit, write down a list of questions to ask your doctor. Between visits, reach out with any questions or concerns you may have.
To get the most support from your health care team, be open and honest. “Nothing is gained by holding back information from your doctor,” Hall says. Tests and exams only tell part of the story. “Physicians rely heavily on their patients’ openness about their health,” he says.
If you don’t feel comfortable talking openly with your doctor, it may be time to find a new one.
Reliable Information and Helplines
Learning more about hep C may help you understand and manage it better. But be sure to stick with reliable sources.
Websites. “We tell people that generally, websites that end in ‘.gov,’ ‘.org,’ or ‘.edu’ are best,” Hall says. Try the CDC (cdc.gov) and National Institutes of Health (nih.gov).
“One very dependable source with lots of great information online, plus a toll-free number, is the American Liver Foundation, or the ALF (liverfoundation.org),” Palmer adds.
Hep C organizations. Many hep C organizations have a variety of support resources available online and over the phone.
ALF Help Center (1-800-465-4837). The ALF can answer your questions about your diagnosis, talk about your concerns, and help you find information, resources, and support through their support community.
Help4Hep (877-HELP-4-HEP). You can find information and support for hep C at this nonprofit, toll-free helpline with peer-to-peer counselors. They can help you find doctors, low-cost clinics, support groups, financial help, and other resources.
Hepatitis C Mentor & Support Group (HCMSG). “The HCMSG was founded specifically to address the lack of awareness and support of people living with chronic hepatitis C,” says Michelle Barnett, a physician assistant (PA) at Associates in Gastroenterology in Colorado Springs, CO. “They provide resources and services including one-on-one mentoring to patients with hepatitis C.”
Local health departments. You can also find information, free testing, counseling, and support groups through your state and local health departments, Hall says.
“Large, urban centers like New York City or Los Angeles will have more resources than smaller communities. It may take some digging in smaller areas, but the help is there,” he says.
Support Groups and Online Communities
Many people with hep C find emotional support through online communities and support groups.
“Interacting with other people with hepatitis C can make you feel less alone,” says Barnett, who has worked with people with hep C for 20 years.
Palmer says attending in-person support groups has been very helpful throughout his journey. Talking to other group members has given him a variety of insights that he wouldn’t have without the group.
To find a support group or community, reach out to the ALF or HCMSG. “The ALF maintains an online support forum and has links to in-person support groups in most states,” Barnett says. “The HCMSG provides resources and services like one-on-one mentoring for patients with hepatitis C.”
You can also find support groups on social media. “I’m a member of several closed groups on Facebook,” Palmer says. Since questions, answers, and discussions are only seen by group members, people tend to share freely, he says. The groups have been a steady source of insight, encouragement, and inspiration.
To get the most out of an online community or support group, it’s best to share as openly as you can. If you feel embarrassed or worried, remember that the people in your support community aren’t there to judge you. They’re there to share experiences and advice to help you live better.
When to See a Therapist
If you feel anxiety, depression, or loss of interest in things that used to give you pleasure, it may be a good idea to get professional help. Try talking to a professional counselor or therapist. Seeking professional help isn’t a sign of weakness, Hall says. It’s a sign of strength.
You are your most important ally against hepatitis C. Lifestyle changes can make your medications work better and help you look and feel good. Even small changes can pay off big.
You can help yourself in mind, body, and spirit. Here’s how:
Quit Alcohol
Drinking when you have hepatitis C is like throwing gasoline on a fire. Alcohol is toxic to the liver, and so is hep C. Together, they can put liver damage on a fast track.
Booze makes it harder for your hep C treatment to rid your body of the virus. You may also find it harder to take your medicines as directed if you drink.
If you’re waiting for a transplant, you must not drink at all. Talk to your doctor if you can’t stop on your own. They may suggest alcohol treatment or counseling.
Hydrate!
Drink plenty of water, especially if you’re on hep C antiviral treatment. Good hydration may help you avoid some side effects, like dry skin and mouth.
More water helped Bob Rice, of Boston, when he was on hep C treatment. He started getting headaches late in the day. His nurse said to double the amount of water he was drinking each day.
“I did that and the headaches went away,” says Rice.
Aim for at least 6 to 8 glasses, says Alexea Gaffney-Adams, MD, an infectious disease specialist in Smithtown, NY. Down 2 glasses of water for every caffeinated beverage you drink, she adds.
To get more water each day:
Keep chilled water in easy reach.
Set an alarm on your phone to remind yourself to sip water every hour.
Add a slice of lemon, lime, or cucumber to add flavor.
Eat foods with lots of water, like watermelon.
Watch Your Weight
If you’re overweight, obese, or have conditions like type 2 diabetes, fat can deposit in your liver and cause fatty liver disease. Over time, that and hepatitis C can raise your chance of cirrhosis (bad scarring).
Losing 5% to 10% of your total body weight can help, Gaffney-Adams says. The best way to do it is to cut calories and get moving.
Eat Well
A good diet can help you lose weight and improve your health. It can make your liver work better and lower your risk of cirrhosis. Eating right can boost your immune system and lower your chance of type 2 diabetes, too.
A healthy diet includes:
Whole-grain breads and cereals
Five servings of fruits and veggies a day
Lean proteins like chicken and fish
Foods low in salt, sugar, and fat
Move Your Body
Exercise leads to good health. It helps you lose pounds, improves your mood, and fights fatigue.
Talk to your doctor before you start an exercise routine. If you get the green light, start out slowly. Do 5 or 10 minutes of moderate exercise like walking. Repeat this 2 or 3 times a day.
Remember the best exercise is the one you’ll do. So if you hate walking but love dancing, put on your dancin’ shoes!
Sleep Well
Make sure you’re getting enough sleep. There’s a link between poor sleep and health problems like obesity, heart disease, and mood disorders.
The goal is 7 to 9 hours a night. To get more shut-eye:
Keep your bedroom cool.
Go to bed at the same time each night.
Avoid caffeine in the evening.
Turn off the phone, computer, and other electronics an hour or two before bed.
If you need a nap during the day, go ahead and snooze. But keep it brief, about 20 minutes. Napping more than that can mess with nighttime sleep.
“Rest when you need rest,” says Rice, who received a life-saving liver transplant in 2010 before his virus was completely gone in 2015.
Be Wary of Supplements
Some supplements can hurt your liver, especially if it’s already damaged. These include:
Comfrey
Kava
Shark cartilage
Skullcap
Valerian
St. John’s wort can affect how some hep C antivirals work.
Tell your doctor about all vitamins, supplements, and over-the-counter drugs you take to make sure they’re safe.
Get Support
Groups, either online or in person, can be a gold mine for people with hep C. You can learn ways to live well with the virus, discover how to manage drug side effects, and share your experiences, too.
Rice says his doctor suggested he join a group in 2006.
“I started isolating myself because I was pretty sick at the time,” he says. “I didn’t want to be around people. I didn’t want to talk to people about how I was feeling.”
The support group made a huge difference.
“I could go to a meeting or call someone from the group and just talk to them … and hear suggestions about how they got through certain things,” says Rice.
Even after his transplant, he kept going to meetings. “That’s because there was always someone walking through that door that was going through things that I had gone through prior,” he says.
Ask your care team about support groups in your area. The American Liver Foundation has an online community that may help.
Relax
Living with hep C and all the other demands of life can be stressful. Constant stress can affect your whole body, including your immune system.
Finding a way to relax can melt away the stress. Some ways you can do this include:
Mind-body techniques like yoga or tai chi
Deep breathing or meditation
Connecting with friends
Limiting stress is key to managing any chronic disease, Rice says. He believes a very stressful period in his life made his liver disease worse.
“I went from stage 2 cirrhosis to full-blown cirrhosis in less than a 2-year period.”
Learning to let things go helps with stress, Rice says.
“My motto is if I can’t control it, I just need to just walk away from it.”
You are your most important ally against hepatitis C. Lifestyle changes can make your medications work better and help you look and feel good. Even small changes can pay off big.
You can help yourself in mind, body, and spirit. Here’s how:
Quit Alcohol
Drinking when you have hepatitis C is like throwing gasoline on a fire. Alcohol is toxic to the liver, and so is hep C. Together, they can put liver damage on a fast track.
Booze makes it harder for your hep C treatment to rid your body of the virus. You may also find it harder to take your medicines as directed if you drink.
If you’re waiting for a transplant, you must not drink at all. Talk to your doctor if you can’t stop on your own. They may suggest alcohol treatment or counseling.
Hydrate!
Drink plenty of water, especially if you’re on hep C antiviral treatment. Good hydration may help you avoid some side effects, like dry skin and mouth.
More water helped Bob Rice, of Boston, when he was on hep C treatment. He started getting headaches late in the day. His nurse said to double the amount of water he was drinking each day.
“I did that and the headaches went away,” says Rice.
Aim for at least 6 to 8 glasses, says Alexea Gaffney-Adams, MD, an infectious disease specialist in Smithtown, NY. Down 2 glasses of water for every caffeinated beverage you drink, she adds.
To get more water each day:
Keep chilled water in easy reach.
Set an alarm on your phone to remind yourself to sip water every hour.
Add a slice of lemon, lime, or cucumber to add flavor.
Eat foods with lots of water, like watermelon.
Watch Your Weight
If you’re overweight, obese, or have conditions like type 2 diabetes, fat can deposit in your liver and cause fatty liver disease. Over time, that and hepatitis C can raise your chance of cirrhosis (bad scarring).
Losing 5% to 10% of your total body weight can help, Gaffney-Adams says. The best way to do it is to cut calories and get moving.
Eat Well
A good diet can help you lose weight and improve your health. It can make your liver work better and lower your risk of cirrhosis. Eating right can boost your immune system and lower your chance of type 2 diabetes, too.
A healthy diet includes:
Whole-grain breads and cereals
Five servings of fruits and veggies a day
Lean proteins like chicken and fish
Foods low in salt, sugar, and fat
Move Your Body
Exercise leads to good health. It helps you lose pounds, improves your mood, and fights fatigue.
Talk to your doctor before you start an exercise routine. If you get the green light, start out slowly. Do 5 or 10 minutes of moderate exercise like walking. Repeat this 2 or 3 times a day.
Remember the best exercise is the one you’ll do. So if you hate walking but love dancing, put on your dancin’ shoes!
Sleep Well
Make sure you’re getting enough sleep. There’s a link between poor sleep and health problems like obesity, heart disease, and mood disorders.
The goal is 7 to 9 hours a night. To get more shut-eye:
Keep your bedroom cool.
Go to bed at the same time each night.
Avoid caffeine in the evening.
Turn off the phone, computer, and other electronics an hour or two before bed.
If you need a nap during the day, go ahead and snooze. But keep it brief, about 20 minutes. Napping more than that can mess with nighttime sleep.
“Rest when you need rest,” says Rice, who received a life-saving liver transplant in 2010 before his virus was completely gone in 2015.
Be Wary of Supplements
Some supplements can hurt your liver, especially if it’s already damaged. These include:
Comfrey
Kava
Shark cartilage
Skullcap
Valerian
St. John’s wort can affect how some hep C antivirals work.
Tell your doctor about all vitamins, supplements, and over-the-counter drugs you take to make sure they’re safe.
Get Support
Groups, either online or in person, can be a gold mine for people with hep C. You can learn ways to live well with the virus, discover how to manage drug side effects, and share your experiences, too.
Rice says his doctor suggested he join a group in 2006.
“I started isolating myself because I was pretty sick at the time,” he says. “I didn’t want to be around people. I didn’t want to talk to people about how I was feeling.”
The support group made a huge difference.
“I could go to a meeting or call someone from the group and just talk to them … and hear suggestions about how they got through certain things,” says Rice.
Even after his transplant, he kept going to meetings. “That’s because there was always someone walking through that door that was going through things that I had gone through prior,” he says.
Ask your care team about support groups in your area. The American Liver Foundation has an online community that may help.
Relax
Living with hep C and all the other demands of life can be stressful. Constant stress can affect your whole body, including your immune system.
Finding a way to relax can melt away the stress. Some ways you can do this include:
Mind-body techniques like yoga or tai chi
Deep breathing or meditation
Connecting with friends
Limiting stress is key to managing any chronic disease, Rice says. He believes a very stressful period in his life made his liver disease worse.
“I went from stage 2 cirrhosis to full-blown cirrhosis in less than a 2-year period.”
Learning to let things go helps with stress, Rice says.
“My motto is if I can’t control it, I just need to just walk away from it.”
A hepatitis C diagnosis often comes with more than just infection. There can be a mental toll, too. When you have it, you may fear what others think of you, or you may deal with negative reactions to your diagnosis. This stress can lead to mental health issues. In fact, one-third of people with hepatitis C have depression.
But there’s hope. You can manage and even cure hepatitis C with today’s treatment options. And alongside these treatments, you can find support that will improve your mental stress.
Understanding the Stigma
Like many health conditions, hepatitis C isn’t well-understood by the public, which leads to stereotyping and assumption.
“There are times when hep C is more prevalent in the news because of a problem like the opioid crisis, and as a result, when the average person hears someone has hep C, they automatically think, ‘Oh, that’s a substance abuser,’” says Wendy Tayer, PhD, a UC San Diego Health clinical psychologist who specializes in chronic illness treatment.
Though the main way people get hepatitis C is through sharing needles during illegal drug use, there are many other ways to get it, too. These include blood transfusions, organ transplants, tattoos or piercings with an infected tool, or exposure in a health care setting.
Even if others know how you got your infection, another common reaction is fear that they’ll catch it from you. When retired nurse Laurie Smith, 73, contracted hepatitis C as a result of an accidental needle stick at work, some members of her family kept their distance.
“I was asked not to eat off of plates or drink out of glasses at some family gatherings” she says. “Even 6 months after I was cleared of the infection, certain family members were still wary of me.”
But hepatitis C isn’t like a cold or the flu. You won’t get it just from being around someone who has it, or from drinking and eating after them. You can only get it if infected blood enters your bloodstream. Even having sex with someone who has hepatitis C comes with a very low risk of infection.
Advocating for Yourself
Who you talk to about your infection is up to you. But when you do decide to have a conversation, it’s a good idea to have your facts straight.
“I’m a big proponent of having the patient become an advocate and an expert in their own condition and then educating their support system about the condition,” says Tayer.
Some of the information you can have at the ready:
Hep C is curable.
It often doesn’t cause any symptoms.
The risk of passing it on to others is very low.
Even with facts, you can’t control others’ reactions. Part of safeguarding your mental health is learning to focus on yourself and understanding that’s the only person you can change.
“Most of my family was very understanding, but others really had a problem with it,” says Smith. “Even after showing my paperwork that said I was cured, it took a good 6 months for some of them to come around to me.”
Finding Support
Studies show the anger, depression, and anxiety that often come with a hep C diagnosis are often a barrier to reaching out to others for support. But caring for your mental health isn’t just important emotionally; it can also make a difference in your treatment outcome.
“People who have a good support system in place are much more likely to comply with the full treatment regimen,” says Tayer.
Some ways to boost your mental wellness include:
Connect to others with hep C. Hep C isn’t rare. You can join online and in-person groups to talk about life with hep C. “There are people with hep C who have developed organizations and websites to share resources and ask for advice, such as Life Beyond Hep C, I Help C, and The Mighty, which is a health care consortium of like-minded people dealing with health challenges,” says Tayer.
Consider counseling. Regular sessions with a trained therapist will give you tools to use when you’re struggling with your mood. “There is really good help out there,” says Tayer. “And with the advent of telehealth, your odds are increased for finding a provider somewhere in your state who can help.”
Look after your overall health. Quality sleep, good nutrition, and regular exercise are all important for general wellness and help manage symptoms of depression and anxiety. You can also use other health professionals like dietitians, physical therapists, or pain management specialists, depending on what your symptoms are.
Use solid resources. Sites like the American Liver Foundation, the National Institutes of Health, and the CDC are good sources of information about hep C. “Stick to verified websites that are science-based with medical research behind them,” says Tayer. “That way, you’ll know what to expect with symptoms, the clinical picture, treatment, and how you’ll need to take care of yourself.”
You have hepatitis C, a disease caused by a virus that’s contagious and attacks the liver. Maybe you know how you got it. Maybe you don’t.
Whatever the case, the virus could be just part of the problem. Now that the doctor has told you that you have hep C, get ready to battle a range of head-spinning emotions that often can be as difficult to deal with as the virus itself.
There are ways to calm your nerves and ease your mind.
What You’re Facing
Fear and anxiety: Most people with hepatitis C don’t have any symptoms. Even if you’ve had it for years, you may not have the fever, fatigue, nausea, vomiting, and other things that some folks with the virus have.
Still, doctors will tell you that hepatitis C is a serious disease that can cause lasting damage to the liver, including cancer and a scarring of the liver (cirrhosis). Hepatitis C is, in a word, scary.
“I think fear is probably the first thing: ‘What does it mean?’ ” says Lucinda K. Porter, RN, author of two books about her experience with hep C.
“If you don’t know anything about hepatitis C, and you go on the Internet — which a lot of people seem to go to before they go to their physicians — you might see a full variety of outcomes, including death. Or see that this is an infectious disease and get the fear you might infect someone else. That’s a huge fear.”
The fears keep coming:
Is it going to be debilitating?
Can you infect someone else?
Will you be able to work?
How are you going to pay for your treatment?
How are you going to take care of your family?
How are you going to pay the mortgage?
“Once you learn more, you find out that hep C doesn’t work like that,” says Porter, who works as a hepatitis C advocate, writing for hepmag.com and hcvadvocate.org. “If you find out about it in an early stage and get some good, solid information, you find out that those fears don’t usually get realized.”
Remember: In many cases, the medicines that your doctor prescribes can pretty much wipe the virus out of your body.
“There is nothing to be afraid of. No matter how you got the infection, now we have a group of different, good therapies that can get rid of this infection,” says Victor Machicao, MD, a gastroenterologist with McGovern Medical School at UTHealth-Houston.
“I usually tell [people] there’s a good chance that, you start taking the treatments, you’re going to start feeling better, and by the time that we complete the therapy, you’re going to feel almost like a new person.”
Embarrassment and shame: Hepatitis C gets spread through exposure to an infected person’s blood. That’s the only way. Often, that’s how intravenous drug users, sharing needles, spread the virus. Sometimes, it gets passed down through high-risk sex. Before 1992, when blood wasn’t screened for hepatitis C in the U.S., it often was passed along through transfusions and organ transplants, too.
Some of those activities — drug use and high-risk sex, especially — are what many people associate with hepatitis C. That thinking creates a stigma that makes people who have the disease not want to tell others about it.
“So many of [the people I treat] are those baby boomers who did have a brief period of experimentation with drug use. Or maybe they did use drugs for a year or two of their adolescence. But now, that’s like 30 years ago,” says Andrew Muir, MD, a hepatologist who is chief of the Division of Gastroenterology at Duke Clinical Research Institute in Durham, NC.
“Often, they’re not married to somebody that they knew back then … it’s embarrassing, then you’re worried about what that person is going to think of you, and then when you realize that there may be a chance that you’ve passed on the virus through sex. … All these things are spiraling around in their heads.”
Guilt: “There’s a lot of guilt, especially in someone who has a remote history of IV drug use, or got a tattoo at an unregulated parlor, or had a high-risk sexual encounter,” says Nancy Reau, MD, section chief of hepatology at Rush University Medical Center in Chicago.
People feel guilty about the possibility that they’ve infected others unknowingly. They feel guilty about putting loved ones in a situation that is often financially and emotionally costly. Sometimes, it can be too much for a person to handle.
Regret: People with the disease often beat themselves up for not making better choices when they contracted the virus.
“At that point, I tell every single one of my [folks] that there’s not a single one of us that wouldn’t go back and change a decision that we’ve made,” Reau says. “To some extent, looking back isn’t going to help us. We have to look forward.”
Anger: “Anger is not an uncommon one. Anger is one of those emotions that make us feel like we’re empowered,” says Porter, who got hepatitis C in 1988 through a blood transfusion.
For some, it comes from the fact that they had nothing to do with what gave them the virus.
“I didn’t react with anger because in my case, that blood transfusion saved my life. But other people … can feel quite angry, and they feel quite victimized by that. I find [this] one is probably the hardest to address. Sometimes I just acknowledge that they feel angry.”
Depression: The virus, the symptoms that may accompany it, all the emotions — it can be difficult to handle.
Muir says a common scenario, in his experience, is a drug user who addresses the problem of addiction, goes in for treatment, and just as things start looking better, finds out they have hepatitis C.
“I find a lot of them are really down on themselves: ‘I’m a bad person, I did this, I’m being punished for it.’ We really need to try to change the way they feel about that,” Muir says.
“I was a mess. I felt dirty. I was hard on myself,” says Stella Armstrong, a Las Vegas office manager who got the virus through drug use. Armstrong is now virus-free and is a hepatitis C advocate and member of the National Patient Advisory Committee for the American Liver Foundation. “I had to seek counseling. I had to see a psychiatrist. I was taking depression and anxiety medicine.”
How to Get Help
Talk to your medical team. Meet with your doctor and anyone else you might need (a hepatologist or pharmacist, for example). Get a plan. Follow treatment.
“You start there. Always,” Porter says.
Don’t underestimate the power of feeling physically better. It’s good for your mind, too.
Once again, the virus can disappear in many of those who have hepatitis C.
“People are surprised. They ask you, ‘Doctor, did you mean ‘cure’?” Machicao says. “They come to the office and say, ‘Doctor, that means I don’t have the infection anymore?’ I tell them, ‘For practical purposes, you’re cured.’ They are in total disbelief. It is amazing.”
“The success of being cured of hepatitis C is really powerful,” says Muir.
If you feel depression or anxiety, the National Institute of Mental Health suggests that you talk to your primary doctor or go to a psychologist or psychiatrist. Depression is a real illness and, even in the most severe cases, it’s treatable with medication or other means.
Get educated. Find trusted sites online. Ask your doctor questions. Know what the virus is all about. Separate fact from fiction.
“Education is how we start breaking down the stereotypes. How we find out we don’t need to be afraid anymore,” Porter says. “It can release the chains of anger.”
Find some support. It can help to talk with other people who have been through what you have. Your doctor can point you toward online groups filled with people who are going through the same process. In some places, you can meet with people in person. Social services through government agencies or hospitals can help, too.
“When you start to see other people who have a history of drug use, that regret and shame starts to diminish. ‘OK. I’m not a bad person. I can deal with this,’ ” Porter says.
“I’ve always been open and have discussed my addiction with drugs. I think it’s the best thing. We only stay as sick as our secrets,” Armstrong says. “It was better for me to share my story. It’s still the same thing. It’s still hepatitis C, and we have to get through it.”
Lean on family, friends, clergy, whomever it takes. Whether it’s someone else who has been through hepatitis C, or a spouse, a parent, a sibling, or your best friend — even if it’s a complete stranger — sometimes you just need a shoulder or a sympathetic ear. Search them out. Use them.
“No matter how much positive you can hear about it, you still have to go home, you still have to be at a point by yourself, thinking these bad thoughts and you’re worried and you’re scared and you’re scared of the unknown,” Armstrong says. “Those are the times you have to call somebody and talk to them.”
Take care of yourself. Once you get your medical plan in place, once you have your support in line, once you’re educated and know what you’re facing, taking a little “me” time is in order.
“Having a chronic illness is hard,” Reau says. “Start by looking at the things you can change easily.”
Eat well. Exercise. Get your sleep. Some people like to meditate. Nap if you need to nap. Make sure you’re around people you like. Enjoy a good book or a movie. All these can help you deal with the stress and emotions of hepatitis C.
“Even at my lowest point and when I was feeling really sick, you just gotta keep moving. You have no other choice,” Armstrong says. “You have to keep moving forward and treating yourself well.”
More than 2 million people in the United States live with hepatitis C. Many of them haven’t been treated and are at risk for cirrhosis, liver failure, and other complications of the disease, even though new and better medications have made treatment easier and safer than ever before.
Most people don’t ignore their hep C. They’re unaware of it. Over half of those who have been infected don’t know they have the virus.
“The most common reason why someone isn’t getting treated is that they’re not diagnosed,” says Norah Terrault, MD, professor of medicine and chief of the Division of GI and Liver at Keck School of Medicine, University of Southern California.
Hepatitis C is a silent disease that usually doesn’t cause symptoms until its late stages, Terrault says. That’s why the CDC recommends that everyone ages 18 and older get tested at least once in their lifetime.
Testing is especially important for people who are at higher risk for hep C because they share needles, they have HIV, or they had an organ transplant or blood transfusion in the past. It’s also important for pregnant women, who can pass the infection to their unborn baby.
Untreated Hepatitis C Complications
Hepatitis C infects the liver, an organ in your belly that produces bile for digestion and rids your body of toxins. The virus causes inflammation that slowly damages your liver over many years and leaves it scarred.
Without treatment, that damage and scarring can turn into cirrhosis in about 20% of people with the infection.
“Cirrhosis is the end stage of many decades of inflammation and injury,” Terrault says. “It means you’ve got a lot of scarring in your liver, and the scarring is interfering with the function of the liver.”
Once you have cirrhosis or liver cancer, “It’s difficult to come back from,” she adds. “Your treatment becomes a liver transplant or potentially a very complicated cancer therapy.”
By treating hepatitis C you’ll prevent cirrhosis. And by preventing cirrhosis, you’ll avoid liver failure and liver cancer.
Nonliver Complications
Your liver isn’t the only organ that hepatitis C can damage. The virus also triggers the production of cryoglobulins, proteins that clump together and cause inflammation. This can increase your risk for kidney disease, blood vessel damage, and skin rashes.
Hepatitis C might also affect your body’s ability to use insulin, the hormone that moves sugar from your blood into your cells. About 1 in 3 people with chronic hepatitis C have diabetes. It’s such a common problem that doctors routinely monitor their hepatitis C patients’ blood sugar levels, Terrault says.
Can the Virus Go Away on Its Own?
That depends on how long you’ve been infected. About 25% of people who have recently been infected — called acute hepatitis C — do clear the virus on their own. People in their 20s and 30s are more likely to clear the virus than those in their 60s and older, Terrault says.
The other 75% of people don’t clear the virus within 6 months and develop chronic hepatitis. “For chronic hepatitis C, the answer is no. There is no way to get rid of it,” says Ype de Jong, MD, a hepatologist at Weill Cornell Medicine in New York City.
What Treatment Can Do
Once you get tested and find out that you have hep C, treating it not only prevents complications. Medication will most likely cure you.
Treatments have improved dramatically in the last decade. Before 2013, the main option for people with hepatitis C was to take a combination of peginterferon alpha (PEG-Intron) and ribavirin, plus boceprevir or telaprevir. This three-drug cocktail took up to 12 months to work, only cured about half of people who took it, and caused severe side effects.
The introduction of direct-acting antiviral medicines like sofosbuvir (Sovaldi), simeprevir (Olysio), and daclatasvir (Daklinza) was a “game changer,” de Jong says. “We could start curing people with interferon-free regimens.”
The new generation of hepatitis C drugs work quickly, within 8 to 12 weeks. And they cure about 95% of people who take them.
Plus, they’re very safe. “Two-thirds of my patients have zero side effects,” de Jong says. “The most common side effects are headaches, fatigue, and some GI discomfort. All are very mild.”
If You’re on the Fence
Some people who’ve lived with hepatitis C for many years or who remember the old drugs might worry that going through several weeks of treatment will be tough. “I tell them it’s going to be easier than treating your blood pressure in terms of the side effects, and it’s going to be shorter,” Terrault says. “This is the easiest thing you’re going to do in terms of benefitting your health.”
Getting treated will lower your risk for cirrhosis, liver cancer, and liver failure. You might also reduce your odds of getting diabetes, and protect your heart and kidneys. “If you treat someone and cure them, you can substantially reduce their future risk of getting those complications,” Terrault says.
Plus, you won’t be able to pass the virus to anyone else — including your unborn baby or sexual partner. And once you’re cured, you’re cured for good. The virus won’t come back unless you get reinfected.
When is the pandemic “over”? In the early days of 2020, we envisioned it ending with the novel coronavirus going away entirely. When this became impossible, we hoped instead for elimination: If enough people got vaccinated, herd immunity might largely stop the virus from spreading. When this too became impossible, we accepted that the virus would still circulate but imagined that it could become, optimistically, like one of the four coronaviruses that cause common colds or, pessimistically, like something more severe, akin to the flu.
Instead, COVID has settled into something far worse than the flu. When President Joe Biden declared this week, “The pandemic is over. If you notice, no one’s wearing masks,” the country was still recording more than 400 COVID deaths a day—more than triple the average number from flu.
This shifting of goal posts is, in part, a reckoning with the biological reality of COVID. The virus that came out of Wuhan, China, in 2019 was already so good at spreading—including from people without symptoms—that eradication probably never stood a chance once COVID took off internationally. “I don’t think that was ever really practically possible,” says Stephen Morse, an epidemiologist at Columbia. In time, it also became clear that immunity to COVIDis simply not durable enough for elimination through herd immunity. The virus evolves too rapidly, and our own immunity to COVID infection fades too quickly—as it does with other respiratory viruses—even as immunity against severe disease tends to persist. (The elderly who mount weaker immune responses remain the most vulnerable: 88 percent of COVID deaths so far in September have been in people over 65.) With a public weary of pandemic measures and a government reluctant to push them, the situation seems unlikely to improve anytime soon. Trevor Bedford, a virologist at the Fred Hutchinson Cancer Center, estimates that COVID will continue to exact a death toll of 100,000 Americans a year in the near future. This too is approximately three times that of a typical flu year.
I keep returning to the flu because, back in early 2021, with vaccine excitement still fresh in the air, several experts told my colleague Alexis Madrigal that a reasonable threshold for lifting COVID restrictions was 100 deaths a day, roughly on par with flu. We largely tolerate, the thinking went, the risk of flu without major disruptions to our lives. Since then, widespread immunity, better treatments, and the less virulent Omicron variant have together pushed the risk of COVID to individuals down to a flu-like level. But across the whole population, COVID is still killing many times more people than influenza is, because it is still sickening so many more people.
Bedford told me he estimates that Omicron has infected 80 percent of Americans. Going forward, COVID might continue to infect 50 percent of the population every year, even without another Omicron-like leap in evolution. In contrast, flu sickens an estimated 10 to 20 percent of Americans a year. These are estimates, because lack of testing hampers accurate case counts for both diseases, but COVID’s higher death toll is a function of higher transmission. The tens of thousands of recorded cases—likely hundreds of thousands of actual cases every day—also add to the burden of long COVID.
The challenge of driving down COVID transmission has also become clearer with time. In early 2021, the initially spectacular vaccine-efficacy data bolstered optimism that vaccination could significantly dampen transmission. Breakthrough cases were downplayed as very rare. And they were—at first. But immunity to infection is not durable against common respiratory viruses. Flu, the four common-cold coronaviruses, respiratory syncytial virus (RSV), and others all reinfect us over and over again. The same proved true with COVID. “Right at the beginning, we should have made that very clear. When you saw 95 percent against mild disease, with the trials done in December 2020, we should have said right then this is not going to last,” says Paul Offit, the director of the Vaccine Education Center at Children’s Hospital of Philadelphia. Even vaccinating the whole world would not eliminate COVID transmission.
This coronavirus has also proved a wilier opponent than expected. Despite a relatively slow rate of mutation at the beginning of the pandemic, it soon evolved into variants that are more inherently contagious and better at evading immunity. With each major wave, “the virus has only gotten more transmissible,” says Ruth Karron, a vaccine researcher at Johns Hopkins. The coronavirus cannot keep becoming more transmissible forever, but it can keep changing to evade our immunity essentially forever. Its rate of evolution is much higher than that of other common-cold coronaviruses. It’s higher than that of even H3N2 flu—the most troublesome and fastest-evolving of the influenza viruses. Omicron, according to Bedford, is the equivalent of five years of H3N2 evolution, and its subvariants are still outpacing H3N2’s usual rate. We don’t know how often Omicron-like events will happen. COVID’s rate of change may eventually slow down when the virus is no longer novel in humans, or it may surprise us again.
In the past, flu pandemics “ended” after the virus swept through so much of the population that it could no longer cause huge waves. But the pandemic virus did not disappear; it became the new seasonal-flu virus. The 1968 H3N2 pandemic, for example, seeded the H3N2 flu that still sickens people today. “I suspect it’s probably caused even more morbidity and mortality in all those years since 1968,” Morse says. The pandemic ended, but the virus continued killing people.
Ironically, H3N2 did go away during the coronavirus pandemic. Measures such as social distancing and masking managed to almost entirely eliminate the flu. (It has not disappeared entirely, though, and may be back in full force this winter.) Cases of other respiratory viruses, such as RSV, also plummeted. Experts hoped that this would show Americans a new normal, where we don’t simply tolerate the flu and other respiratory illnesses every winter. Instead, the country is moving toward a new normal where COVID is also something we tolerate every year.
In the same breath that President Biden said, “The pandemic is over,” he went on to say, “We still have a problem with COVID. We’re still doing a lot of work on it.” You might see this as a contradiction, or you might see it as how we deal with every other disease—an attempt at normalizing COVID, if you will. The government doesn’t treat flu, cancer, heart disease, tuberculosis, hepatitis C, etc., as national emergencies that disrupt everyday life, even as the work continues on preventing and treating them. The U.S.’s COVID strategy certainly seems to be going in that direction. Broad restrictions such as mask mandates are out of the question. Interventions targeted at those most vulnerable to severe disease exist, but they aren’t getting much fanfare. This fall’s COVID-booster campaign has been muted. Treatments such as bebtelovimab and Evusheld remain on shelves, underpublicized and underused.
At the same time, hundreds of Americans are still dying of COVID every day and will likely continue to die of COVID every day. A cumulative annual toll of 100,000 deaths a year would still make COVID a top-10 cause of death, ahead of any other infectious disease. When the first 100,000 Americans died of COVID, in spring 2020, newspapers memorialized the grim milestone. The New York Timesdevoted its entire front page to chronicling the lives lost to COVID. It might have been hard to imagine, back in 2020, that the U.S. would come to accept 100,000 people dying of COVID every year. Whether or not that means the pandemic is over, the second part of the president’s statement is harder to argue with: COVID is and will remain a problem.
