CHLP's Jada Hicks talks with TheBodyPro About Hep C Criminalization and Restricted Access to Treatment

The fight against HIV criminalization laws has been a long and hard road—one that has required community mobilization and the talent of experts across the country, including HIV activists, lawyers, and scientists. Over the past few years, activists have been able to dismantle many of these laws across the United States and help change the way the legal system interacts with people living with HIV.

But there is another equally-important policy fight: the fight to dismantle laws criminalizing people with hepatitis C. These overly harsh laws target the same behaviors as HIV criminalization laws: sex, exposure to bodily fluids (saliva, blood), and needle sharing. And like HIV criminalization laws, hepatitis C legislation contradicts science and takes aim at situations where there is no risk of transmission.

At the HIV Is Not a Crime Conference in June, activists Jada Hicks, J.D., and Andrew Reynolds gave a presentation on hep C criminalization legislation and how to fight it. Terri Wilder recently spoke with Hicks, the supervising attorney of Criminal Justice Initiatives at The Center for HIV Law and Policy, and Reynolds, the hepatitis C wellness manager at the San Francisco AIDS Foundation and an independent hepatitis C and harm reduction consultant, on the impact of these laws and the efforts underway to reform them.

Why—and How—Is Hepatitis C Criminalized?

Terri Wilder: Thanks to both of you for talking with me today. Can you start off by giving me a little history or context around how a person with hepatitis C has been or could be charged with a crime?

Jada Hicks: I’ll give a little bit of background on how we ended up here. Maybe one reason we started to see HIV criminal laws transform and affect other communicable diseases, is that legislators were saying, “Hey, we’re going to add this other communicable disease. So it’s not HIV exceptionalism. It’s not discriminatory against HIV. Because we now also criminalize hepatitis.”

So, a lot of states started doing that. There are some states that were already criminalizing hepatitis, and usually we see that in correctional settings. It is already a crime to, say, fling or toss urine, spit, blood, or feces. However, if you’re a person living with hepatitis, it will then enhance the conviction level to a felony, and it will add years onto your sentence.

We also see a lot of crimes around needle sharing, especially with the ongoing opioid epidemic. And we definitely see some states that even criminalize hepatitis in the context of sexual behavior—that you know your status, you don’t disclose your status to your partner, and you engage in some sort of sexual conduct. And what sexual conduct is criminalized is going to differ, depending on which state and how they define sexual conduct or sexual activity.

Wilder: We have a cure for hepatitis C, which we don’t for HIV. I’m wondering if the fact that we have a cure, does that impact when or how a person would be charged legally, or the severity of the charge?

Hicks: It should, shouldn’t it?

Andrew Reynolds: Yes.

Hicks: But, no. It doesn’t matter. A lot of these statutes, it doesn’t matter whether or not transmission occurred. It doesn’t even matter if the activity that you engaged in is substantially likely to result in transmission.

For instance, you’re not going to get hepatitis some of the ways described in the statute that pertains to correctional officers. Yet it’s still criminalized. It doesn’t matter if there’s a cure. It doesn’t matter if you’ve been vaccinated for hepatitis preventatively. It just matters that you are positive and that you engage in a certain conduct.

Reynolds: I would add the other place where the cure for hepatitis C comes into play is in access to the cure for the people who are actually living with it. We know that U=U for HIV. A person who is undetectable is not going to transmit the virus. Well, U is absolutely U for hepatitis C. Because U is a cure. And in many of the states where we see the criminalization of hepatitis C transmission, there’s also restrictions on access to hepatitis C treatment because of substance use restrictions or other requirements.

So the approach we took as a group was to highlight that it’s not just the laws that are criminalizing viral hepatitis, it’s also the lack of access to a hepatitis C cure and to the tools to prevent hepatitis C transmission, like syringes and other injecting supplies.

Wilder: I’m glad you brought that up. We have an opioid epidemic, we have barriers to safe syringe access, we have restrictions on access to curative treatments—how does that influence what could potentially happen to people with hepatitis C?

Reynolds: We’re seeing increased outbreaks of hepatitis C, and getting into the opioids crisis, as well. You know, it’s become this sort of perfect public health storm for some reason amongst people who use drugs.

But I think rather than taking the approach of criminalizing to prevent, we have the tools already in our hands to correct that. We don’t have to have criminal sanctions. Let’s make hep C testing and treatment more readily available. Let’s build out syringe service programs.

I think we’re going in a more positive direction lately. You know, there’s been some increased funding in [U.S. President Joe Biden’s] administration. It does look like the federal ban on purchasing syringes is lifted. Don’t quote me on that, but I’m almost positive that’s the case. Rhode Island just passed a law to do a pilot study for a safe consumption space. So we’re starting to see some of the tools that we know would work.

But at the same time, like Jada mentioned, we still have a significant legal risk in 12 states for individuals. And in many of those 12 states, access to syringes and treatment is severely limited.

Where People With Hep C Face the Harshest Penalties

Wilder: Can you name the states that have criminalization legislation? And is there one state that’s more severe than others? What does that language look like?

Hicks: So, the 12 states are Utah, Nebraska, Iowa, Missouri, Ohio, Indiana, Pennsylvania, Virginia, North Carolina, Tennessee, Mississippi, and Georgia. And then, are there some states that are harsher in how they treat hepatitis? Yes, in that they criminalize a broader range of activities for people living with hepatitis. So, Indiana is pretty severe in that it criminalizes sex, needle sharing, and bodily fluids. Right behind that would be Tennessee, North Carolina, and Mississippi. We have a map on our website that points out which states criminalize hepatitis C and what conduct is criminalized in each state.

Reynolds: One newspaper quoted Indiana’s law, when they talk about exposure to bodily fluids, it says: “It is a Level 6 felony for someone to place bodily fluid or waste on another person in a rude, angry, or insolent manner if they knew or recklessly failed to know that the material was infected with hepatitis.”

They don’t really define bodily fluid, proving intent, and all that. It’s a very broad, big law that leads to serious prison time. But also, I would argue, a significant degree of stigma in that it actually discourages people to engage in care and treatment because if I don’t know my status then I might think that’s a way to protect myself. Like we say, punishment is a terrible solution to public health.

Wilder: The former vice president of the United States, Mike Pence, was the governor of Indiana when we had an HIV and hep C outbreak. There’s a lack of services for people who use drugs—so it’s no surprise that there was this outbreak and then, unfortunately, we’ve got these criminalization laws on the books.

Hicks: I don’t know that we learned our lesson from the Scott County outbreak, in that we need to have preventative measures already in place. That’s an important point to bring out whenever we talk about Scott County, Indiana, and the hepatitis outbreak that occurred there.

Wilder: According to a fact sheet on the HIV Law Policy website, an estimated one-in-three inmates in United States prisons and jails is living with hepatitis C. And less than 1% of those with a hep C diagnosis in corrections are receiving treatment.

So, if you’re criminalized and then you end up in one of these facilities, you’re less likely to get treatment. What does this mean to the daily existence of someone with hepatitis C who is incarcerated?

Reynolds: It really is quite terrible. The one-in-three—it’s a consequence of who we’re arresting in our war on drugs. We’re going after people who use drugs, who are just having drugs, not necessarily dealing. So, it could be something as short as a couple of days in jail or a longish 10-, 15-, or 20-year sentence.

And then when you’re in a jail or a prison, your access to testing and treatment is extremely limited. This is especially true in jails where, quite frankly, it’s expensive to test and treat. If a jail is like, “Well, I’m only going to keep you for less than a year, it’s kind of cost-prohibitive for my program to treat you.”

In prisons there’s a little bit more of an incentive if somebody’s going to be in there for a long time. But historically, access to treatment in prisons hasn’t been very good. There are some states where it’s getting a little bit better. I’m in California. We actually are testing and treating everyone for hepatitis C in our state, with the goal of eliminating hepatitis C in our state prison system. But I would say that’s the exception to the rule.

And so, again, it’s that sort of continuum of lack of care, where we’re preventing access to the prevention tools, and we’re preventing access to the cure on the outside. But we’ll arrest you, we’ll put you inside, and then we’ll do the exact same thing. No prevention tools while you’re inside, and no treatment.

“We’ve Got to Get Rid of These Laws”

Wilder: We’ve talked about what can happen to folks who are incarcerated. How does this legislation that criminalizes hepatitis C impact the daily lives of someone with hepatitis C who is living outside of prison or jails?

Hicks: One of the biggest things is that there’s a lack of education surrounding these laws. Andrew and I presented together maybe two years ago to an audience of people living with hepatitis. Many of them were surprised about what they could be criminalized for.

And so, if you think about it, if you have hepatitis and you don’t engage in an activity, any sort of sexual activity where likely transmission occurred, that’s a scenario where some people would not disclose their status because they don’t see the point of it, in that they’re not going to transmit. Yet we’re still going to criminalize that person. If the other person learns your status and then finds that you didn’t disclose it, that’s a felony charge right there.

So, that part of it is even making people aware that these laws exist, and how harsh they are, and how harsh the penalties are, would be the starting point.

Reynolds: Again, it exacerbates that fear and stigma. Even folks who didn’t know it until after our presentation were like, “Oh, my God. This is just horrible. And it could be used as a weapon against us, even if we did disclose our status? It becomes a sort of like, he said/she said kind of thing, where I might say, ‘No, I told the person about my viral hepatitis.’ If the other person was like, ‘No, they didn’t,’ I get in trouble.”

Wilder: I’m wondering if criminalization might prevent people from getting tested for hepatitis C, because you can’t charge me with something if I’m not diagnosed with it?

Reynolds: We know that that happens with HIV criminalization legislation—it discourages people from getting tested. We don’t have qualitative or quantitative data on that for hepatitis C. But it would make sense that I might think not knowing my status would be a way of protecting myself from getting criminalized. So I do think it’s a disincentive to testing.

Hicks: We have heard anecdotal evidence that that’s the case. So, I want people to know that this isn’t something that advocates are just pulling out of thin air. We have heard that when we are out and speaking with people that are living with hepatitis—and other advocates, as well.

Wilder: There have been a number of people who have been criminalized for their HIV status, and have come out and told their story. The SERO Project certainly has done a lot of work in sharing people’s stories of what that experience was like. Do we have any folks in the hep C world that are spokespeople, telling their stories?

Hicks: We have HIV advocates that are speaking about how they’ve been criminalized because they were either already in the work or someone was able to identify them and get them involved, we don’t necessarily have that same thing happening with hepatitis. Because we’re not even sure exactly when people are being charged. You have to remember that there isn’t a recording system put in place that allows us to easily track these cases. A lot of it is when we see it on the news, or what we hear from communities.

Reynolds: That’s the biggest challenge. A lot of times charges happen, again, completely under the radar, where we don’t hear about it. But then you’ll see an alert from a hepatitis C listserv. It’s also worth noting, this is not just happening in the United States—this is something that exists in other countries, as well.

Wilder: What can you suggest for people who want to fight back against these laws? Are there ways to get involved?

Hicks: I would encourage people at the local level. There are always advocacy grassroots efforts taking place throughout the United States. So I would encourage them to reach out to those local groups, be involved, get educated, and get the training. We offer training on how to speak to your legislators. We have a toolkit that’s coming out later that will explain what is criminalized and how it’s criminalized. And you can speak to legislators. I think just using the tools at your disposal to become knowledgeable on this issue so that you can advocate for yourself and advocate for change.

Reynolds: I would say the next steps after the release of the viral hepatitis toolkit are to build relationships with local harm reduction advocates and local patient advocacy groups in the states that we work in and that have laws that criminalize viral hep so that we can build up the grassroots movement. We’ve got to get rid of these laws—and there are opportunities to do it. As we build awareness, like Jada said, with the tools that we have, and then with the work of the other partner organizations that have been involved in this—NVHR (National Viral Hepatitis Roundtable), HEP (Hepatitis Education Project), Harm Reduction Coalition, and so forth—there will be opportunities there.

Wilder: You named the 12 states—are there states that you worry might end up enacting one of these pieces of legislation? Are there states that we need to be monitoring and watching?

Hicks: This is something that people that engage in this work need to be on the lookout for at all times, whenever they engage in reform efforts. So whenever you’re doing HIV legislation, you need to always be aware of how you’re defining what diseases are criminalized. Because oftentimes, the scope of criminalization will broaden without people being aware of it.

I don’t know that there’s a particular thing that I’m worried about. I’m worried about anything that engages in reform without being cognizant of the fact that there are other communicable diseases that could be open to criminalization based on how they define communicable disease within their law.

Wilder: And when you say reform, can you define that?

Hicks: To reform the law really means to try and catch it up with medical data and science. So, typically we try to require some sort of intense treatment, that the individual is engaging in an activity that is substantially likely to result in transmission and requiring transmission recur. So reform really relates to any sort of effort to try to update the HIV-specific criminal laws throughout the United States.