VOCAL-NY has advocated for New York State and New York City to take a comprehensive approach to hepatitis C control and elimination for more than a decade. Through their community organizing efforts, they’ve mobilized hundreds of people directly affected by hepatitis C to demand public resources and policies to expand prevention, testing, and linkage to care, and curative treatment. They are founding members of the New York State Hepatitis C Coalition, which unites dozens of organizations in a common effort to end the epidemic and which, among other activities, serves as a platform for the VOCAL-NY–organized annual New York State Hepatitis C Legislative Awareness Day and budget advocacy.
More than 200,000 New Yorkers are living with chronic hepatitis C virus, which can lead to severe liver disease and now accounts for more deaths each year than HIV and AIDS nationwide. Many people with chronic hepatitis C can be easily cured with treatment, although many do not know their status and too few of those who do are connected to care.
To find out how the COVID-19 pandemic is impacting people living with, and at risk for, hepatitis C, Terri Wilder spoke with David Kalinoski, VOCAL-NY’s hepatitis C care coordinator. In his role at VOCAL-NY, he provides counseling, runs weekly support groups, screens people for hepatitis C, links people to treatment for hepatitis C and buprenorphine treatment, and conducts street-based outreach with harm-reduction education.
Kalinoski graduated with his Bachelor of Arts from the College of Media and Communication at Temple University in 2013, and is a recent graduate from Columbia University, with dual Master of Social Work and Master of Public Health degrees.
Terri Wilder: So, David, tell me more about your work at VOCAL-NY. What is a day like for you as a hep C care coordinator during COVID-19?
David Kalinoski: The scope of my work really ranges, depending upon what a participant coming into VOCAL may need. So, a lot of the essence of the work in harm reduction and social work practice is meeting the person where they’re at. That’s really based on a participant-led and -driven plan.
When a person does walk into VOCAL, they may be looking for safe drug-using equipment, or to simply talk to someone, or have access to our drop-in space, which people from the outside can simply just sit, and there’s value to that. Or if they really want to talk to someone more in depth about what’s going on in their life, I’m there for that. We also provide screening and treatment for hepatitis C, in addition to buprenorphine treatment for folks that are looking to have more maintenance and taper down from opiate use.
TW: Is VOCAL open for people to physically come to it? Or are you doing more, kind of, telephone, telehealth services?
DK: VOCAL right now is open. So, from Monday to Friday, our hours of operation are now, instead of 10 a.m. to 6 p.m.; it is now 10 a.m. to 4 p.m. For folks that need to access our syringe-exchange program, they are still able to come and get their safe drug-use equipment. We’ve amped up things like gloves, in giving access, you know, in addition to the drug-using equipment. More gloves, more alcohol wipes, more chloride wipes, as well—for things that should be sterilized with non-alcohol base in it.
Our bathroom is still open, too, which, you know, participants can use. It’s a harm-reduction bathroom. So, it’s a—it decreases the likelihood that someone overdoses in the street and not have anybody there to monitor the situation, when a person needs privacy to not feel sick, or to take care of themselves. So, we are open.
However, we also have taken the measures of practicing physical distancing. So, it’s only one person in at a time. And the staff has really been three people in the whole operation, from a staff’s point of view, to keep VOCAL running for the participants on those days, throughout the week.
TW: Have you seen any change? Are there less people coming into VOCAL than would normally have happened if we weren’t in the middle of a pandemic?
DK: There certainly are less people. You know, we now are seeing probably, on average, 14 to 20 people per day use the services at VOCAL. I don’t have the concrete numbers but, I mean, it’s easily double that on—you know, towards the 40s and 50s per day of people coming into VOCAL.
Also, the value of having just a drop-in space—whether there’s groups being run, or people can simply just sit down and have a cup of coffee, or even, you know, rest their head—because a lot of our population are people who are either street homeless or shelter homeless. That has really impacted the numbers of people coming in; but also brings an element of worry to us, as staff, as to how folks are doing. Because we can’t have them in close quarters in the drop-in space—just because there are constraints with that physically, and what we should be doing to practice good public health.
TW: New York State is trying to eliminate hepatitis C. How has COVID-19 impacted hepatitis C testing in the community? Have you seen a reduction in people getting hepatitis C testing?
DK: Yes. COVID-19 pandemic has dramatically changed the process for testing, too. We are not testing right now. Because in order to do the testing with the methodology, it is required that we are right with the person with their arm in breathing distance, where there’s chance of exposure to droplets; but also different surface contact, which coronavirus can live on. So, with that in mind, we have stopped testing. Other programs have stopped testing, just to not put participants, our navigation team at VOCAL, and other programs around New York City at risk.
TW: Typically, hepatitis C testing is that people would come to the VOCAL office? Or are workers outreaching in the community, like, in neighborhoods?
DK: So, that is a mixed method, how we get people to get screened. For folks that walk into VOCAL, in the office we do have testing right there on site. However, we also know that that is not enough. Because some people will maybe never step foot in VOCAL, or have no idea about knowledge on hepatitis C, and the risks of contracting the virus. So, we do street-based outreach in various neighborhoods throughout Brooklyn. Because Brooklyn is an underserved area in New York City, but also has the highest population of all the boroughs in New York City.
So, we go out to Bed-Stuy, to Red Hook, Brownsville. When it’s warmer, we would have been going to Coney Island and East New York. Downtown Brooklyn, as well. These neighborhoods also were where we were doing outreach to provide education, and also to recruit people to come in and know their status.
TW: If people aren’t getting tested for hepatitis C, they don’t know their status; therefore, there could be people in the community that have hepatitis C that aren’t getting linked to care. What are some of the consequences of this, in terms of not being able to get people tested?
DK: The consequences are it puts more folks at risk, with the absence of service and just the limitations of service that we can do. So it’s a tough go. And even in terms of what hospitals and treatment centers are focused on doing right now has shifted as well, too, with the health system, in general. And we’re part of that. The priorities have shifted, and, again, folks are more at risk to contract and spread—or possibly just not know—and symptomology could get worse.
Luckily, with hepatitis C, in most cases, it is not imminent life-or-death. And folks can wait some time for treatment, whether that’s a few weeks’ or months’ delay. But it doesn’t help, especially with folks that know their status, to know that they will have to wait some time in the treatment process.
So, what we’ve been doing is trying to coordinate telemedicine or telephoning participants and keeping track. And also doing some social work counseling engagement with people we have had contact with, just to keep them engaged and informed, which can be reassuring and at least, you know, let folks be more at ease with the health status. Because that is always anxiety provoking.
TW: Is the not offering the hep C testing right now—is that unique to VOCAL? Or are you hearing that with other organizations across the city or even the state, that they’re not doing hepatitis C testing right now?
DK: Yes. It’s not just unique to VOCAL. And just from the state health recommendations, and also CDC, we’ve withdrawn from doing that for the moment, until we know it will be appropriate to do that from systems larger than us, health systems larger than us. We’ll put a pause on that temporarily. And, you know, I don’t know how long that will persist. But, yeah. We’re not unique in that situation.
TW: When would you say is the last time your program tested somebody for hep C? Was it three weeks ago? Four weeks ago? Two weeks ago?
DK: The week of March 9 was probably our last week of doing a hep C test.
TW: Did anyone test positive for hepatitis C during that last week that you were testing?
DK: We did have a detectable status for a person during that last week. So typically, without COVID-19 shutting down a lot of the services, we’d start the process of getting that person in the pipeline of treatment. So, that has been something that’s been paused.
But the caveat to that is we can still conduct telemedicine appointments and really just help mitigate some of the process that would still inevitably be there, such as conducting a psychosocial evaluation to see where the person’s motivation is, their medical history, to start building a therapeutic alliance with the social worker, the nurse practitioner, and the doctors that will all be involved in their cascade of treatment. So, some of these things still can be ongoing. You know, we may not have them doing extensive lab work to see which treatment medication they’ll need. But, in the process, we can still take care of other items that will continue and be a part, ultimately, of their treatment cascade.
TW: Even before you guys shut down that part of your program, if you got diagnosed with hepatitis C that last week, you’re still not going to be able to start treatment because of the way that labs have to be involved in informing the treatment plan. Is that what you’re saying?
DK: Exactly. Yeah. And depending on what that person’s medical history is, for whatever the most effective medications would be for them and their blood type, or if they’ve had hepatitis B or HIV, prioritizing which medications; or if they need to treat something before they treat their hep C.
TW: I guess for me, listening to you talk, the concern is that you can’t really successfully link them to care, because they can’t really come in to do labs. And therefore they can’t start treatment for cure. But what if they’re a person that’s had it for a long time and they didn’t know it? And there’s the possibility that the liver’s already becoming cirrhotic?
DK: Well, this is the tough part with hepatitis C. It’s like, without those tests, there’s no true way of knowing how the progress of the liver is doing, or just at what stage they may have a cirrhotic liver, if it comes to that, you know, in terms of severity.
So the plan with that is, it’s—that’s something more that I would involve our team of doctors with, to see what could be mitigated at the time, and if there is a special situation to accommodate a more severe case, where it’s urgent that a person be linked to treatment.
TW: But your sense is, in general, that if someone didn’t get in quickly after their diagnosis within the last, probably, six weeks to get those labs in, they’re most likely not going to start treatment for cure? They’re going to have to wait?
DK: Yes. That is the concern.
TW: In terms of a liver disease clinic, or a clinic that specializes in hepatitis C, I would imagine—is the workflow completely different now for the doctors and nurses? If they’re not having their hep C patients come in, or a new patient with hep C, are they getting pulled into helping with COVID-19?
DK: Yeah. So, at least from our team, our nurse practitioner, for example, has been deployed throughout the hospital network that she’s hired through, because we’re in a partnership with our clinic at VOCAL. So, that’s deployment for treatment outside of what VOCAL is doing with hep C. And the same goes with our doctors that are also partners with us in the clinic at VOCAL; they’ve—two have had to be deployed elsewhere throughout the hospital network with Mount Sinai. So that’s part of the function of the work right now, that COVID-19 has impacted our program. So, it does look different.
TW: Have you had any of your clients that you, in your hep C care coordination client panel—have any of your clients tested positive for COVID?
DK: To my knowledge, no. I don’t know how many have even been screened or tested for COVID. No one has presented any symptoms that would have raised concern in any of the staff over the last, I’d say, three weeks now. But, again, it’s a tricky disease, with the COVID virus right now, in terms of having any certainty.
DK: Initially, we were doing fever testing when we still had participants freely coming in, and no restrictions on the number of people. But there’s no tests at VOCAL being administered to see if someone has COVID-19. And I hear the testing for that is quite a process, that it’s not easy on the person getting tested.
TW: No, it’s not. It’s really uncomfortable, you know, because they put this swab up your nose. And it’s not comfortable. It almost feels like it’s going up your brain. But the thing is, yes; it’s uncomfortable. But can people even find it to be available? If you don’t live in a certain area, you don’t have access to the drive-through testing. Or, if you aren’t connected with a health system that offers it, or if they have restrictions on who they allow to get tested—you’re right. Your participants may not even have the opportunity to get screened or tested.
What do you think are the top social service needs for your clients right now? You work with a community that has food insecurity, housing insecurity. Has COVID-19 complicated those experiences even more? Or has it opened up some other resources that have been able to help your clients?
DK: It is complicated, I’d say. A lot of the lives of the population of folks that we work with, from folks who may be doing maintenance through a methadone program—that’s been a total mess, in terms of getting people take-home prescriptions.
TW: And when you say it’s been a mess, what do you mean?
DK: Well, instead of giving people prescriptions to take home, the lines have been backed up. And it’s been a big hindrance in the flow of someone’s day, where their priorities sometimes are choosing between trying to make money during certain hours, or waiting all day to get access to your methadone. Instead of, in a time like this, just letting people have two-week take-homes for their medication, or even a month. Because already with so many operations being closed, a lot of participants that may panhandle or make money through nontraditional means are struggling as is to figure out where they’re going to make money to keep themselves healthy, for whatever that is in their life.
I can’t imagine in any way that it’s made things easier. And even with circulating lists of food banks being open, the hours are super limited. And sometimes those can conflict with, you know, the example I just described—with the methadone program. Some places are only open from 10 a.m. to 12 p.m. to give food. So, it’s putting people in a position to make hard life choices.
TW: Do I eat, or do I get my methadone today?
DK: Mm-hmm. Or, do I skip that, just so I can try to hustle to get my work? You know? It has been difficult. And even just for people, again, being able to come into programs just to sit down and be warm for a little bit. It’s a windy day; this has been an up-and-down spring so far, from a temperature standpoint. But a lot of folks access spaces like VOCAL to just stay warm for maybe six hours or seven hours—whatever they need.
It has complicated the lives. And I feel for those folks. And, you know, it certainly makes me more thoughtful—even more so with every interaction, just to make sure people are taking care of themselves and have what they need.
TW: Stress is definitely high in the community. And people are probably using different methods to cope. I recognize that VOCAL-NY comes from a harm-reduction space. I’m wondering if you’re seeing an increase in substance use. Or maybe an increase in mental health [issues]. And I’m just wondering if you are seeing that—are there other things that VOCAL’s been doing to help support people?
DK: It has, from my observation. It has prompted people to get more works, just because of the uncertainty with the macroscope of what’s happening, when all of Fourth Avenue [where VOCAL-NY’s offices are in Brooklyn] is pretty much barren of being open—you know, sans the bodega. And even the pizza shops and laundromats; all those are closed now.
So I feel that uncertainty definitely plays a factor in people making sure they’re stocked up for when they come into VOCAL, or even, as someone trained in clinical social work, seeing people hold on to interactions just a little bit more, you know, and sticking around, just to talk, or—not even talk shop—just to have some human contact that they were familiar with in one context just a little bit longer. I’ve noticed an uptick in that, as well.
Also, part of our responsibility is keeping them safe, and ourselves safe, from each other. It has caused things to really just shift, culturally, at VOCAL and throughout the Downtown Brooklyn community. You know?
TW: As I’m listening to you talk, I’m just a little shocked to hear some of the things that you’re saying, particularly about the linkage to care piece for people who have a diagnosis of hep C, and now are going to have to wait. And I just am wondering what we’re going to see, quote, after this is over, when we’re allowed to go back to work freely, go back to living our lives as we would, without this pandemic. And I’m just anticipating in my head that when you’re able to start testing again and people can freely come to VOCAL and your outreach workers can go out; you know, I wonder if you’re going to see an increase in hep C diagnoses. And then what does that mean for the governor’s plan to eliminate hepatitis C? I mean, it’s completely possible that activists are going to have to go back and say, “We need more than $5 million. This pandemic has impacted this situation in a negative way. Now we have more people testing positive for hep C. And we need more access to care. We need more services.” Because in the months that everything was shut down, you know, people coped differently. And it could put them at risk for hep C.
The question is, really, what is this going to do to the governor’s plan to eliminate hepatitis C?
DK: Well, that’s a looming question that I don’t have the answer to. It’s a big question mark. I hope we can still continue the mission and continue to fund our work and give people a link to treatment, especially, that may have hep C. And folks to be more conscientious of their health when they do get screened or receive education.
But, yeah. If funding negatively is impacted, then that will, in turn, impact the work and, ultimately, health, and just really create more of a complicated cluster of health problems and, you know, co-occurring disease, potentially, or infections. Which is scary.
So, it’s really just a daunting type of feeling, in the long term, of what’s going to happen.
TW: In closing, is there anything you’d like to share about your work or the community that you work with that maybe we haven’t talked about?
DK: I think—just in reflection, really what we’re trying to do is come up with different permutations of solutions. And really the highest concern is engaging and figuring out a plan, as this is really happening in real time, for folks who are positive with hep C. And determining with a team of physicians, and social workers, and people in harm-reduction education, what the best approach is in the mix of all this.
I think specifically for the positives that we do know, at least, trying to develop a plan and a method that gets them on the best path moving forward, in the mix of this. And we don’t yet have all the answers.
TW: Great. Well, thank you for your service. I know it’s a stressful time for everyone. And you’re on the front line. When New Yorkers clap at 7 o’clock every night, they’re clapping for everyone that still is on the front lines of work. So, thank you so much for continuing to show up to work every day and help your community.
DK: Appreciate that, Terri. And thank you for highlighting and putting attention on another complex issue with health.