Hepatitis C is a viral blood-borne infection that can cause life threatening liver damage. Acute hepatitis C sometimes gets better on its own, but most people with this infection develop chronic hepatitis C. Early diagnosis and treatment are essential for lowering the risk of complications from chronic hepatitis C.

According to the Centers for Disease Control and Prevention (CDC), there were 107,300 new cases of chronic hepatitis C reported in the United States in 2020. Many cases were related to injecting drugs.

The U.S. Department of Health and Human Services Office of Minority Health reports that Hispanic people experience lower rates of hepatitis C than non-Hispanic white people. However, in 2018, Hispanic people were 40% more likely to die from the disease.

Language and cultural barriers, health-related stigma, and racism in the healthcare system can make it challenging for Hispanic and Latinx community members to access high quality health services.

Systemic racism and structural inequalities also contribute to high unemployment, poverty, housing insecurity, and low rates of health insurance among this group. These barriers add to the challenges of managing chronic health conditions, such as substance use disorder and hepatitis C.

To learn more about the barriers facing Hispanic and Latinx community members and the role that patient advocates are playing in driving change, Healthline spoke with Ivette Chavez Gonzalez, a peer outreach worker in Buffalo, New York. Ivette was diagnosed with hepatitis C in 2015 and has received treatment to cure the infection.

This interview has been edited for brevity, length, and clarity.

A lot of healthcare agencies don’t have Spanish speakers to explain to people what’s going on with their health. What’s their viral load? What’s the treatment?

English is my second language. Luckily, I mostly understand it, but sometimes I don’t understand the words that doctors throw at me. “Wait, hold on, what’s that mean?” I have to stop them because I want to know what they’re telling me or what treatment they’re going to give me.

Another barrier that I see is that nurses or doctors don’t always explain the whole process to someone. They say: “OK, you got your hepatitis C appointment. You’re fine.”

No, no, no. Doctors need to walk their patients through the process, step by step. The patients need to know they can depend on their doctor and they can call for help. And they need to understand what they’re taking. Otherwise, it’s going to create another barrier, if the doctor doesn’t explain how and when to take medication.

In a lot of states, you also have to get prior authorization for treatment from Medicaid or your insurance. That stops the person from getting medication right away. Sometimes, the insurance company won’t approve the medication because of issues with the information they receive.

How are we going to cure somebody if the insurance doesn’t approve their medication?

There’s also a lot stigma and racism in the health field.

These are the populations I work with — a lot of people who are using substances, people in mental health crisis, people who are homeless. The mental health and homelessness crises are very present in Buffalo.

When someone is sleeping in a shelter or under a bridge, how are they going to take their medication? I’m on the ground with people who are living in tents right now. There are people who are still hepatitis C-positive who have nowhere to go to take their medication.

And it’s like, “Why would I care about my health, when no one cares enough to help me?”

If they’re still using substances, they can also get reinfected after treatment.

That’s so traumatizing, when you did right for yourself and got treatment, but now you’re reinfected and back to square one. In a lot of states, Medicaid doesn’t want to pay for retreatment, or insurance providers make it difficult to get treatment if someone is using substances.

We have to look at the whole system because it’s all connected.

I go out into the community and work with a local agency in harm reduction. I’m helping with wound care and giving out sterilized syringes and Narcan to people who are using substances. I’m making sure they get connected with a doctor for hepatitis C and HIV medications, but it’s not just about making appointments for people. I’m also staying connected with them and walking them through the process.

I have lived experience and understand that sometimes people might be scared of treatment or side effects from medication. That’s when I come in and say, “You know, I took this medication, and I only got a headache or whatever. It’s just a once-a-day pill, and the side effects aren’t as bad as they were with hepatitis C medication in the past.”

Or if someone has a problem, they can call me. I have a work cellphone. I ask them where they are and tell them I’ll meet them.

Sometimes, they have a lot of questions, and I answer what I can and walk them through the process with their doctor. I try to keep it simple, and I do a lot of outreach in Spanish.

I try to just be there and comfort them. I think they trust me and can identify with my story. It helps them to know I’ve been in their shoes.

The language barriers need to go. The insurance barriers need to go. The stigma definitely needs to go.

We’ve got to treat people right and not judge them. Understand what a person is experiencing right now. Not tomorrow, not yesterday. Right now.

“You’re using substances? OK, how are we going to get you linked to treatment?”

We have to be loving, caring, and compassionate with people. If there’s no love and care in the job you do, you might as well quit because it’s not going to work.

Advocates like myself are fighting for better laws, better systems, better medication, better everything for people who have hepatitis C.

Ivette Chavez Gonzalez is a member of the National Viral Hepatitis Roundtable’s #Voices4Hep advocacy network. She is a peer outreach worker who helps to link people with hepatitis C to harm reduction and treatment services in Buffalo, New York. She’s also the founder of the Buffalo-area nonprofit mutual aid organization, The Giving Back Foundation, Inc. She was diagnosed with hepatitis C in 2015 and has since undergone treatment to cure the infection.