Eradicating the Silent Killer

Two per cent of the population lives with viral hepatitis, but many are unaware until it’s too late, so a social enterprise is upskilling individuals and organisations to respond to the silent pandemic.

HEPReady is an initiative of Hepatitis Victoria, the peak not-for-profit organisation working across the state for people affected by or at risk of viral hepatitis.

Hepatitis Victoria CEO Melanie Eagle says viral hepatitis is known as the “silent killer”.

“Two per cent of the population live with chronic, viral hepatitis, but many don’t know until it’s too late, and they should be already receiving treatment,” Eagle says.

“Often people don’t have symptoms until many years of having the condition so it’s often undetected, and so we do call it the silent killer because people are so poorly informed about it and it’s not overt in its symptoms early on.

“Often it’s cold and flu-like symptoms, just feeling nauseous, so it’s not particularly overt or obvious.

“It’s actually amazingly prevalent, four Victorians die each week of viral hepatitis, so we’re talking road toll proportions.”

This is despite the fact that there are treatments and preventions available.  

“There’s actually a cure now, it’s been available on the pharmaceutical benefits scheme, cures for hepatitis c, and there’s also a vaccine for hepatitis b,” Eagle says.

“So we’ve got tools available to us to really have an impact on both hepatitis b and c, we’ve just got to spread the word, and so that’s what we’re seeking to do.”

She says a vital part of eradicating viral hepatitis is to assist service providers to be competent and capable in dealing with the illness.

“As a way to intervene… to achieve the targets that have been agreed to globally around the elimination of viral hepatitis, is to upskill the workforce, particularly health and community workers who come into contact with people who are at risk of or live with viral hepatitis,” she says.

“We want to empower those workers so they can have the necessary conversations, which is often difficult because it’s quite a stigmatised and poorly understood condition.

“We want them to have the conversations to encourage people to get tested and to get into treatment, and we then see the workforce as part of the solution, we want to empower them to be part of the eradication program around hepatitis.”

HEPReady is a fee-for-service program, providing tailored education and training for professionals from services including, hospitals, ambulances, maternal and child health, dentists, needle and syringe exchange programs, community health centres, migrant health centres and and aged care facilities.

The first program is called Essentials, which Eagle says covers “basic epidemiology issues around how hepatitis, mainly b and c, is transmitted, what are the symptoms, who are the at-risk population”.

“Then we talk around how does it manifest itself in terms of how would people present with it, how you can have conversations around that,” she says.

“We always have a person with lived experience participating in those Essentials programs, and sharing their experience and being available to answer questions, so people can learn to be comfortable to have those empathetic conversations.”

Essentials is offered in a variety of ways, including in person or online.

“It can be at our workplace or we go out and tailor it to workplaces,” Eagle says.

“So if they mostly work in CALD communities where hepatitis b might be more prevalent, then we’ll focus it around that, or if they work in the alcohol and drug sector where hepatitis c might be more prevalent, then we’ll tailor it around that.”

Since graduating from the Social Traders Crunch program 18 months ago, HEPReady has reached around 200 people.

Working with Melbourne University and an advisory committee of experts, including people with lived experience and medical professionals, Hepatitis Victoria has evaluated and refined its offering.

“People have found the lived experience component the most valuable, and then they’ve identified the areas where people might like more in-depth knowledge,” Eagle says.

On 28 March a new, more in-depth training program, called Comprehensive, will launch.

The program will be initially delivered online, including live interaction with an expert, and there are a number of specialist areas of training on offer.

“You specialise in seven areas of interest, but everybody’s to complete a comprehensive packet and so you can be accredited in saying you’ve undergone Comprehensive training,” Eagle says.

“There is a requirement then for people to also have a face-to-face session with a trainer where we also have lived experience presence because we think that’s critical, that contact with people who have personal experience of hepatitis, and giving people the opportunity to have dialogue around that.

“Our evaluation tells us that’s what people find most valuable.”

One of the aims of HEPReady is to reduce the stigma and isolation of people affected by viral hepatitis, which, Eagle says, is why lived experience is so vital.

“We’ve identified an essential part [of training] is having greater understanding of the personal impact and trying to reduce the stigma,” she says.

“That’s why we have combined HEPReady with… HEPSpeak, which is our public speakers bureau.

“While we’re educating we’re doing it in a way that’s deliberately aimed at breaking down misunderstandings, reducing stigma and assisting people to be more empathetic when they’re interacting with people who are at risk or living with hepatitis.

“So that’s a very deliberate objective and we’re lucky to be able to do that because we do have these trained public speakers.”

Eagle says starting a sustainable business within a not for profit was a way to reach more people.

“It was a journey that we went through with the board and staff,” she says.

“We do get funded to do health promotion, and included in that is education, but there was no way… to reach the scale of the need, because it’s amazingly prevalent.

“I mean 2 per cent of the population are already living with hepatitis, let alone those who are at risk of acquiring it. So we just weren’t able to get out to those people.

“So we had to set it up in a way that could be self-sustaining and could grow.”

HEPReady is set up on a cost-recovery basis.

“We use our own skilled trainers, our staff that have already been doing this type of education, but we have additional staff to manage the establishment of it to do the course curriculum, to do the videoing, to set it up on a learning-management system platform and to set it up in a way that we can ensure that it is going to eventually be self-funding,” Eagle says.

“It’s the first time we’ve had to do that, it’s a new thing for us. We’re a not for profit so we had to embed this within what we do, but try to track how it is performing financially separately.

“We had to think through are we seeking to make a profit, are we thinking to recover costs, and we determined that it’s the latter – sufficient recovery of costs so that we can grow the training offering.”

She says setting up a fee-for-service program as a not for profit came with some challenges.

“There was that initial hesitancy about should we be charging for something where… sometimes there is education available, but a limited amount of it in this area,” she says.

“And also [we] weren’t sure whether community-based organisations, who are often the ones we’re seeking to have participate, would be prepared to pay.

“But I think we have found that, provided it’s not too expensive, that yes they will pay because they know that it’s important knowledge for their staff to have.”

Another challenge has been making the training convenient for a wide variety of professionals.

“For people who maybe work in a pharmacy or who are reception staff at a medical centre, when is it going ot be convenient for them to participate, how much time have they got available,” Eagle says.

“That’s why we’ve increasingly moved to online, and also these Comprehensive courses, the first one which we piloted [last week] was in the evening and was allowing people from remote areas to actually participate.

“So it’s actually how do you make it available in a way that will facilitate people participating that might otherwise find it difficult.”

But she says the professions that work with hepatitis have rallied behind the program.

“We’ve been so generously assisted by, one, our advisory committee and, two, the people who have been prepared to be videoed [for online training], and we’re talking about very busy clinicians who might, for example, run the transplant clinic out at the Austin Hospital or have very busy medical practices at St Vincent’s or at the Burnet Institute,” she says.

“These people are actually making their time available to be videoed because they’re so committed to trying to eliminate hepatitis, and they see also that workforce capacity building is an essential part of that. So there have been many positives as well.”