An unusual collaboration fighting the scourge of Hepatitis-C
The public health challenges of low-income communities of color often don’t make headlines. While there is wide debate about the effects of the opioid epidemic and other health challenges, the silent scourge of Hepatitis-C is roiling those communities.
Cecil “Ngoni” Tengatenga is attempting to change that narrative. A graduate of Trinity College, Tengatenga works in the Health and Human Services department in the city of Hartford. He is the project manager for the federal Ryan White Program, which serves the metropolitan area of Hartford, Middlesex and Tolland counties in combating Hepatitis-C and HIV/AIDS.
Tengatenga has focused on health education and prevention for low-income communities of color, but he found an unexpected barrier to his work: Individuals he was trying to educate couldn’t understand the educational materials he had. They were written at a tenth-grade reading level, but many of the people he spoke with could only read at a fifth-grade level. He would need some other way to get his message out.
His attempts to reach out to people in a new way led him to the experimental sounds of Baka Fana, a musical group started a little over a year ago by Enrique J. Espinoza, 29, and Busani Ngazimbi, 28. The two became friends during their graduate studies in music at Central Connecticut State University, and dedicated themselves to infusing rock and other genres of music with their own personal and political touch.
The three men bonded over their shared history. Both Tengatenga and Ngazimbi hail from Zimbabwe, while Cecil works in Hartford’s government with Espinoza’s father. So when Tengatenga suggested using music to reach out to low-literacy populations about their health, a partnership was born not just to combat Hepatitis-C in the Hartford region, but also to show under-served communities what is possible for them.
In this Sunday conversation, they talk about their unusual effort to get information about Hepititis-C and other health issues to Connecticut’s low-income residents.
Why don’t we start with you, Cecil. Can you tell us about your role with Health and Human Services?
Tengatenga: My role there is to manage projects for the federal government that address health inequalities among low income individuals living in Tolland County, Hartford County and Middlesex County. One of the cool projects that we’re doing this year and for the next two years is we’re trying to expand Hepatitis-C treatment and prevention services for the populations I just mentioned, and for this particular initiative we are specifically targeting people of color.
One of the things that was identified in 2014 was amongst folks born between 1945 and 1965, one in 30 of them were infected with Hepatitis-C. So in Connecticut we created whole legislation to make sure that we get everybody in that population treated.
The next group that was also heavily hit and and that we simply did not target with that intervention was people of color. Looking at HIV and Hepatitis-C, about 80 percent of low-income individuals affected with Hepatitis-C in the three counties I mentioned are people of color. So that’s why we’re targeting them.
The way we’re doing the intervention itself is we are focusing on prevention activities that include education, community healthcare events and we’re also doing treatment expansion in about seven clinics. These are University of Hartford, Hartford Health Care and St. Francis Hospital. We’re also working with community health centers, Community Health Services in the North End of Hartford, Charter Oak Health Center, Rockville General Hospital and the Hospital of Central Connecticut.
So it’s really a multifaceted project but the goal is, let’s find everybody else who’s co-infected with HIV and Hepatitis-C who happens to be of color and also fits the low- income bracket. And we’re doing that with partners like Baka Fana who are really here to support this project because one of the main drivers of the successes for our screening campaign and education campaign is going to be how you reach populations whose literacy levels in general are low but also their health literacy education is low.
Enrique can you tell me a little about yourself and the work you do with Baka Fana?
Espinoza: Busani and I started this group together a little over a year ago now and we started it as a regular rock group. And then he and I decided that we felt that it was something more than that and that we should be a production company, a studio, a statement of who we were as individuals, and that meant we would stand for things.
So Baka Fana literally means “voice.” “Fana” from Ndebele and “baka” originally was Gaelic. We wanted to be something more than just a music group. We wanted to make music, and create a movement of some sort. And not in the sense that we wanted to make a genre of music. We wanted to make sure that everyone in Hartford was connected in some way. There’s a hip hop scene, there’s a punk scene, there’s a jazz scene, there’s a West Indian reggae scene and they don’t hang out with each other. Ever.
And that’s a big thing. They all stay separate. They all do their own thing, and it would be such a cool thing if there was a scene that connected it all together. And we just want to, as a group, just make that a thing. We want to stand for things politically because both our parents, we were raised in very political households. My parents were activists. [Busanis’s] parents, his mother fled her country.
Ngazimbi: She was in the health field, too.
Espinoza: So not only were we raised in political households, the flavors of music that we were raised with influenced us, too. That’s what we are, from my perspective.
Busani, tell me about yourself. What are your musical influences and what are you hoping to accomplish with Baka Fana?
Ngazimbi: I’m from Zimbabwe originally. I came here when I was 14, and I started playing music when I was here. And I met Enrique while studying classical music. And for a while my music, in my mind I thought it was like blues and classical and hip hop and mostly American and European music mixed together.
But then I got the chance to go back home earlier this year, and I was listening to music on the radio and I was playing my guitar, and I realized that it was exactly the same without even realizing that it kind of stayed like that. Which is a cool moment but also, as we were going around [Hartford] like Enrique was saying, we would go to various scenes around here and they were all kind of like self-enclosed.
And part of the reason why me and Enrique see that lack of true inclusion I think is because we got a chance to go to school and study it. So one of the things that I really want to get done with this band in terms of outreach is getting musical education to those people in lower-class situations who maybe only see sports as the way out.
Cecil, when you were conceptualizing this project to reach out to lower-literacy communities dealing with Hepatitis-C, what made you think of music as a way to go in terms of in terms of outreach?
Tengatenga: So I mean there are a couple of things. I’m an artist myself and I work in performing arts and I do plays; I do a little bit of poetry, whether that’s spoken word or a fusion of what my friend Busani would probably understand, because I’m also originally from Zimbabwe.
Information was disseminated to us through art. And you know the impetus to the government doing those kinds of things was there was a high level of illiteracy amongst the population. So the most effective way you could get any kind of educational or useful information was to put it through some kind of performative form, but also our music.
Music is always designed with its purpose to educate and entertain. And it’s not different with the population here. So when I looked at the data and I was trying to design the project, I thought about a couple ways we can have community education for everybody because we really need everybody to be screened for Hepatitis C.
So we can have these high-level innovations that are targeting folks who go to these hospitals and do health fairs. The more upscale hospitals do things that they can naturally gravitate to. But when it comes to people of color, particularly low-income people of color, we’re looking at the education materials that would be sent down to our state that will be sent out into hospitals. These materials were written at the tenth-grade level. And our population, we did surveys, and they were reading at a fifth-grade level.
There was that huge disconnect, and the education itself, the delivery was missing some people. So it wasn’t surprising that not only are we looking at 50 percent of people who are infected with Hepatitis C not knowing their status, if you’re a minority that’s even bigger. I would even say it is close to 80 percent — 80 percent of minorities who are living with Hepatitis C don’t know it. And then those people are reading at a fifth-grade level, if they can even read.
Espinoza: Or if they can even read English. There’s a large population that just speaks Spanish. That’s a serious problem, too.
Tengatenga: That’s right. So music I think levels the playing field in terms of receiving education but also music does something useful particularly because of the times we’re in.
To me, people of color include new Americans and immigrants. With the climate that we’re in, trying to do targeted events that try to bring out people and put their identities on the line, was not an effective way of reaching out to those marginalized communities who we do have and who are very anxious today, just anxious about being new to the country but also being anxious about whatever else is happening.
But music and art creates a forum where those identities fizzle away and everybody else is enjoying the art and getting educated at the same time. And I think for us from a public health standpoint, I think that’s what you want; what’s the most effective way we can pass this message and see that translated into more people coming back for screening.
And more people are saying, “My health literacy for Hepatitis C has gone up from where it was before I came to the concert.” We do surveys, pre-concert surveys and post-concert surveys, just to make sure there is some knowledge gained when people come to our events.
But this is not happening in isolation. This is part of this collaboration within what we call Curating Our Stories, which is a new initiative that we’re doing to have targeted outreach to low-income communities. But there are other prevention activities that we’re doing.
We have separately a whole team of community health workers. When we go to events like this and Baka Fana is performing, there are people surrounding that event anonymously, offering free screenings for Hepatitis C and also making their referral at the event.
If you test positive at this event, these are folks who know which doctors exactly you need to go and see depending on what you report your zip code as. We also have patient navigators who then see this client as they come into the clinical space and support them over that eight to 12 weeks of treatment to make sure that they stay on course because the Hepatitis C medication, you need to take it every day and having patient navigators is a way to support that.
And then on the back end, once they’re out we follow them for 12 weeks to make sure they’re not reinfected. So the initiative is not in isolation. It’s surrounded by other initiatives. But as far as reaching the hardest to reach populations I think having Baka Fana and other artists who are involved in creating our story project makes that information more accessible.
How did this connection come about? How did you all decide to partner together on this initiative?
Ngazimbi: It was kind of by chance and it was just very serendipitous.
Tengatenga: It was serendipitous for them, but for me I knew exactly what I was looking for.
Ngazimbi: But I think before we started talking about what we were all doing, Cecil and I realized that we’re from the same country because he just came into where we worked and that was that.
Espinoza: And not only that but my father also works for the city of Hartford. So I mentioned that. Yeah. And we talked about that for a little bit.
Ngazimbi: I think after that we started talking about art and music very quickly and then slowly getting interested in what [Cecil] did. We went and performed on Trinity College for an open mike and we saw Cecil perform and realized that he was an artist as well. He didn’t mention that until we saw him. We saw him and then we’re like OK, now we can work with this guy!
Enrique, can you speak to how your vision for Baka Fana fits into public health and the other ideas you have?
Espinoza: We’ve been specifically planning on opening a studio. We’re trying to do that ourselves. And we would like to collaborate with as many artists as possible. We’ve been trying to find people to come in there and use the space. Not only us, but local artists to come in and help them out. We would like to produce them. We’d like to support them. We’d like to create something for them.
And it’s a hard process and we’re still doing it. But Busani and I would like to make an organization that makes that a little bit easier for people. Not only just the band aspect which promotes us. But we’d like to have something that people from the community and the greater Hartford area can go to, with just talent, and little know-how, because in the beginning that’s all we had.
Tengatenga: Speak a little bit more to your background. So it’s not only just finding information and finding equipment, but you had to hustle to put yourself into this process, to attend CCSU. And that to me shows not only the resilience of your art, your investment in art, but it’s also something like breaking barriers. I think we all here can agree that to be of color and pursue education, particularly after you pass a certain age, is hard.
Ngazimbi: Yeah it is. It wasn’t really a rare thing that Enrique and I would be in some classical course and we’re the only people of color in there. And it also wasn’t rare that some Caucasian teachers would suggest we make “African” music. And we know the African they were talking about, like they were thinking Eddie Murphy or something. Like Coming to America.
In their minds they couldn’t perceive a black or brown guy wanting to write a symphony. We just wanted to write some stuff on the bongos, you know what I mean? That was terrible too.
My thing is I want to spread that classical thing to where it’s not surprising if someone who isn’t white wants to do it. And for my whole college career that has been my experience. It’s like, “What are you doing here? Didn’t you want to take the rap instead?” or something. And you probably saw that too [Enrique]. I was more classical and you were more jazz, but we kind of shared some classes.
Tengatenga: As Baka Fana is talking, one of the things that I’m thinking about is another thing that we’re looking at in my initiative. Not only are we failing communities of color from not having information that can directly speak to them and meet them where they are. We also have a shortage of providers.
I think this should be a message, that we all should be out there and encourage young people of color to stay in the health fields and help us out because we have an aging provider workforce. In my jurisdiction, Hartford County, Tolland County and Middlesex County, when we did a survey a majority of our providers were 60 plus. So in 10 years we’re looking at having nobody coming into Connecticut and helping us out, at least on a full time basis helping us out.
You know, curing and getting everybody else treated, whether it’s HIV, asthma, diabetes or Hepatitis C, we don’t have providers. And what Baka Fana has been able to do and is continuing to do is demonstrate that you might be someone else who maybe did not have the early educational opportunities, so I can point to these dudes that are considered very pristine.
And let’s be frank here. It feels many of us of color will not automatically say, “I can be there.” Having Baka Fana come in there and say, no we don’t just do music, but we do classical music, is the same thing I’m trying to do. Walking into communities and say folks, high school kids, don’t just be nurses that work in nursing homes. Can you elevate yourself and become nurse practitioners who are working at a Hartford Hospital, and not only at Hartford Hospital, in infectious diseases with HIV and Hepatitis C.
They’ve been able to navigate that. If we can mirror that story to back up some of the stuff we’re trying to do on recruiting providers I think we’ll be successful. So Baka Fana, their connection to what we’re doing is not only on the message about Hepatitis C but it’s also how do we present models within our own communities who have been successful at pursuing fields that we usually think you won’t see people of color being represented.
And that goes also for low-income white kids who are growing up in Burnside, which is where I go. When you go all the way up to Danielson, Connecticut, which is also part of where I’m working, kids would have never seen their full potential, whether it’s from the health side but also from a career side.
How serious is this problem? In public health we’re generally talking about heart disease, we’re talking about cancer, we’re talking about CTE and traumatic head injuries in the news a lot more often. How serious really is Hepatitis C and HIV?
Tengatenga: Just to give you an idea, look at all of those other diseases you’ve mentioned. For communities of color, just look at life expectancy itself. So for all these other big serious diseases, you’ve seen on the news a brain scan of brain injuries. Dementia, Alzheimer’s, all that stuff. That happens when you pass a certain age.
And the reality of, let’s say to men of color, when you have millions of them ending up in prison, and when they come out of prisons dying of opiod addiction, which contributes to HIV infection, and that’s the primary mode of infection for Hepatitis C, or you look at folks who have diabetes and HIV in our jurisdiction, they’re not living longer to even get to those serious illnesses.
So for us the preventable diseases like Hepatitis C is an issue because not only is it preventable, and preventable by quick lifestyle changes, but it’s also a serious issue because if you have Hepatitis C and you don’t know your status for 20 years, beyond that point you’re more likely to end up in the end stage liver disease or liver cancer.
You will get to those diseases. So your health problems if you have Hepatitis C just exponentially get even worse. But tied to that is the money side. One Hepatitis C treatment course for eight weeks or 12 weeks is roughly, and this is maybe on the cheaper side, you’re talking about $85,000 for one person.
Let’s take the numbers for our jurisdiction. You have about 800 people who have Hepatitis C. You’re looking at 800 times $85,000. That’s a drain on our health resources which, as we know with the recent talks about trying to reverse Obamacare or trying to reverse some of the Medicaid expansion, if they take away that these are people who will be uncured and will have to look for alternative ways of making money.
And we know what those alternative ways of making money are, things that put them at even greater risk of other health problems like HIV or ending up in prison because you’re drug dealing trying to make ends meet for your medication.
How will Baka Fana help to make that fact known, that this is not a personal health issue, but an actual crisis which affects the entire community?
Ngazimbi: Part of the stuff we were planning before is to have these kind of concerts that have music as the main aspect, but then we’ll have short talks in between the acts or in between the songs. And then at the shows as well we could have some screenings on the sides. We can make it known just how big the problem is because I’m still learning as well.
It becomes more than that because I also want to feature art to people who are reading at a fifth-grade level. They probably haven’t been exposed to how they can express themselves through art. So I would love to have some artists there as well.
A place that I’m really interested in bringing art to is a shelter, or prisons or a methadone clinic. These are all places where we are seeing folks who happen to be lower-income and infected with Hepatitis C. These are places where they regularly go, and if they’re regularly going to these places and they’re reading at the fifth-grade level, we need a better way of getting to them.
And we need a couple of strategies. One of the strategies is having case management which many of these places offer. Another way is to have patient navigators which is what we’re also offering on the other side. But there are other ways and how can you get to energize someone?
For me, it really comes down to mental health. How can you support someone else from a mental health perspective? I mean having Hepatitis C, you’re dealing with stigma. It messes you up. If you’re unfortunate enough that you have Hepatitis C and then you also have a substance abuse issue, many doctors until recently would not even treat you because of your substance abuse history.
So now that we’re getting people back in and we’re turning them around things have changed, the guidelines have changed. If you have Hepatitis C, even if you have an alcohol problem, even if you have a substance abuse problem your provider will sit down with you and they can start treatment. But many of them, because they got used to, before 2014, to being rejected and to being turned away, they need emotional support.
And one of the ways you can begin to both provide emotional support but also use the providers themselves and help the providers come and meet people who use the shelters or in the corrections system and see them as people who are just struggling with whatever else they are struggling with is to create a common space and have common language.
Music is something like a common language. We’re also using painting. Painting is a common language. You can look at a painting and say, oh wow. And how cool would it be to say, “This by the way was made by that inmate who is Hepatitis C positive, and he made that image because he wanted to share his story about how stigma affected him from a Hepatitis C perspective.” So I think what Baka Fana is doing is important, and the fact that they’re interested in going to unique places.
Some of the places we’ve been are just like, to me I’m like OK, like Danielson Connecticut. I’d never been there, to that part of the country. But when you go into Windham County or Tolland County in particular since it’s in my jurisdiction, and you’re looking at it, and [The CT Mirror] actually ran an issue on rural health, you’re looking at the ratio there, the ratio between a primary doctor and patients in rural Tolland County or Windham County, and it’s very high.
And for Hepatitis C? Forget it! There was only one provider when we started the project that was actually treating in Tolland County, and you could only get care from them if you were on private insurance. If you’re on Medicare, which is my population, you had to either go to Windham County or drive to Hartford.
So getting to those unique places where nobody goes, and with a band that’s already set on going to alternative places, I think that just makes us a perfect match. We’re into cities, let’s go to places where nobody else listens to this, but also they won’t expect the kind of messaging we’re doing. I think that having that parity helps.
As part of this effort, I hear both the health and the arts education. Why should the taxpayer be concerned about low-income communities, rural communities receiving arts education? As long as these communities are receiving healthcare, shouldn’t that be all that matters?
The health Cecil is talking about is physical. The other health component that is really important is mental health. And part of that involves growth and development, and countless studies have show that arts help with that and mental health is not something anyone can afford to ignore.
No matter how healthy you are physically, if you aren’t mentally healthy, those communities don’t have a chance to develop. And the more developed they are, the less health care help they’ll need in the long run too. So it’s also economically a good idea for you to invest in the arts for them as well.
Tengatenga: In the long term, and economically, would you rather pay a small portion today to treat everybody else who has Hepatitis C today, or would you want to pay for a liver transplant, whose costs will continue to grow as we have more untreated people with Hepatitis-C gradually graduating and ending up with liver cancer or any other end stage liver disease?
So we’re actually saving by getting everybody educated, by giving them today arts education and health education, particularly for Hepatitis C. We are making huge savings on the system so nobody else will have to be paying later. That’s our goal.
And if you look at the viral hepatitis action plan that the Department of Health and Human Services put out, if we can get to 2030 and get everybody cured, the cases of liver cancer that we’ll be seeing will be very few. But right now we’re looking at continuously overspending on something that we can prevent today.
Ngazimbi: Another thing about arts education. It’s also been shown to build empathy in children. And also it helps develop their brains in order to learn other things too. Children with lots of education are more likely to succeed, which means they’ll probably go on to change their own neighborhoods. Which would actually take some of the responsibility away from the rest of the community later, just to back up Cecil’s point about paying a little more now rather than paying a lot more later.
Tengatenga: Think about it. We have serious issues that we cannot address today that we all wish we could address. Yesterday I was reading the newspaper, and one of my heroes, Jesse Jackson, was diagnosed with Parkinson’s disease. We will not, at least in my lifetime, I hope we get there, but we won’t have a cure for Parkinson’s disease for at least a long time. Another one, Alzheimer’s. We won’t have a treatment that effectively cure folks with Alzheimer’s for a long time. At least in my lifetime I don’t expect that to happen.
But with Hepatitis C, in 2014, we came up with medication that effectively can cure Hepatitis C. We can drain this thing out of our community and take it out of our community, and have a generation that’s free of Hepatitis. That has not been true yet for HIV. We’ve been working on HIV for a long time but Hepatitis C, we have the cure. Now let’s get it to everybody.
And I think for anybody else who’s reading this, this should energize us because I think in Connecticut, even though we have all kinds of stuff that can go wrong, we’re also good at rallying behind issues that we really care about. Gun control is one of them. Another issue we care about is homelessness. We’re one of the first states to end veterans homelessness.
It was through the community working on it. I think this, with the cure, with artists, with media, with everybody else in the community being educated about the importance of getting screened, we can cure everybody and we can get Hepatitis C out of our community. So that’s the main message. This is a curable illness but this is also an illness that can be fixed on the prevention side by simple lifestyle changes, and that includes getting education to everybody. So let’s get it done.
This interview was edited for length and clarity.
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