The new direct-acting antiviral (DAA) hepatitis C treatments have been touted as a miracle cure for people living with hepatitis C. But it will be NSPs – and NSP workers – who will do the heavy lifting in educating people about the new treatments, providing encouragement and support for those reticent to get treatment, and making access to treatment as easy as possible.
Stuart Loveday, CEO of Hepatitis NSW, recalls a senior nurse at Sydney’s Royal Prince Alfred Hospital liver clinic describing the effects of the new DAA hepatitis C treatments: “It’s so fantastic! Everybody in the liver clinic is in a good mood these days. It’s a much better work environment because everyone is getting cured! And where they exist, treatment side effects are minimal.” He also recounts Hepatitis NSW peer worker Grenville Rose telling a group of health care workers that “there’s never been a better time to have hepatitis C… because cure is so easy!”
Indeed, Stuart makes a point of always describing the new treatments as “hepatitis C treatment and cure,” such is his confidence in the new drugs. “These new treatments are all oral, they are short duration, they have minimal or no side effects,” Stuart enthuses. “But above all, they have a 95 per cent plus overall cure rate.” But as good as these treatments currently are, they are about to become even better. Right now there are five different available combinations of direct-acting antivirals, depending on which genotype of the virus a person has. “Soon we hope we’ll get a pan-genotypic treatment, one pill a day no matter what the genotype. And how great that’s going to be.”
But Stuart cautions that these great new treatments are only part of the story: educating people about them and creating conditions where people can be easily tested and treated is central to the goal of ridding Australia of the virus within 10 to 15 years. For many thousands of people with hepatitis C, it will be NSPs and NSP workers, who Loveday describes as “a fantastic bunch of people,” who will kick-start and help guide their road to treatment and cure. And while a few primary NSPs can act almost as a one-stop-shop for hepatitis C treatment, with access to fibroscan machines and a complement of nurses and other health professionals attached to them, the bulk of NSPs (as well as pharmacies that distribute injecting equipment), rely on the knowledge and encouragement of their staff, as well as partnerships with services that can help deliver the treatments.
Stuart argues that NSP workers are exceptionally well placed to play a major role by emphasising a few basic things about the new treatments, the most important of which is that they are nothing like the old interferon-based treatments, “which were horrible and made any illness or health condition you had that much worse.” The new treatments are simple to take, the process usually lasts just two or three months, and the side effects for most people are negligible. “They might create a bit of nausea, a bit of listlessness or forgetfulness,” says Stuart, “but nothing like the major depression and anxiety of the interferon treatments. People breeze through the new treatment and can’t believe how easy it is.”
Stuart believes NSP workers can play a major role in helping end the hepatitis C epidemic by providing education, encouragement and momentum. “Have opportunistic or planned conversations with NSP clients, have resources available, fit pack stickers, posters on walls, education sessions. Resources are really key to have on hand,” he says. “By engaging people, by supporting people into hep C treatment, by telling people the right places to go to, which websites to go to, which numbers to call. It’s such an exciting time and we really need to capitalise on it.”
Stuart suggests that there are three waves of people going into treatment, ranging from the early adopters to those who don’t know they have the virus. Of course there will be some overlap between these three waves.
The First Wave comprises about 33,000 people in Australia who are generally articulate, health literate and have been proactive in managing their hepatitis C. The people in this wave have largely already taken up the new treatments in the first 12 months of their availability.
The Second Wave comprises about 70,000 people and is where particular attention is being paid by health departments and drug and alcohol services, and where NSPs will be pivotal.
“These are people who are already accessing health services, but for reasons other than for their hepatitis C,” explains Stuart. “They are people attending methadone clinics or other OST services, people attending NSPs, people in prison and people accessing homelessness and mental health services.”
Stuart points out that although prevalence rate in the general community of people living with hepatitis C is just over 1 per cent (or 230,000 people), the rate jumps to 32 per cent for people in NSW prisons. And the rates for Aboriginal people living with hepatitis C (and hepatitis B) are much higher than in the general community, making community controlled health services as well as mainstream health services an important part of the Second Wave of treatment. By treating the people in this Second Wave, HCV treatment and cure can effectively be seen as “treatment as prevention” of transmission of HCV. “But of course it is vital that we maintain and grow existing primary prevention services such as NSPs,” Stuart emphasises.
The Third Wave comprises everyone else with hep C: around 127,000 people who received their hepatitis C diagnosis many years ago or who aren’t diagnosed at all (perhaps 18 per cent of people living with the virus). This group, in Stuart’s view, is perhaps the most difficult to reach and we need to find new ways of mobilising and reaching people where liver disease will be advancing. Many people come from countries with a high prevalence of the virus or shared injecting equipment many years ago, and their experience of shame and guilt around having contracted hepatitis C can be an obstacle to getting treatment. In Stuart’s view it will be GPs and other primary health doctors rather than NSPs or specialist clinics who are in the best position to get them into treatment.
The other important virtues of the new treatments are the cure rate, which is about 95 per cent, compared to the 50-80% success rate when taking the old interferon-based treatments, and that these new treatments are available to everybody who has hepatitis C. Any adult in Australia can access the treatment for a small monthly prescription charge, whether they currently inject drugs or not. “Australia truly has equal treatment access for all people with hep C,” says Stuart, “and there is no cap to the number of people who can be treated.”
Ultimately what Stuart and Hepatitis NSW would like to see is the treatment and cure of all people with hepatitis C. “We’ve got 10 to 15 years to do it – 10 years is the aim set by the Kirby Institute in Sydney and the Burnet Institute in Melbourne. The World Health Organization has a target of elimination of hepatitis C by 2030. We want it by 2026. And I think we may be able to achieve that,” he argues. “But there is a view out there at senior levels that because we’ve got these new treatments and cures that the hep C epidemic is over. It’s not. There’s an aim to eliminate hep C in 10 years but there’s a huge amount of work to do. Because whatever you do in terms of biomedical advances and treatments and cures, and whatever you do in terms of funding and system reorientation, two things always remain the same: the human behaviour of people providing health services, and the human behaviour of people in the community.”
“There are so many barriers in people’s lives to taking effective health care, to approaching a doctor, to approaching a health service, to approaching a nurse, and doing something about their hep C, because there are other priorities going on. But this is the first time in history we can turn around an existing disease and eliminate it in 10 years.”
“Tragically there are still around 800 deaths per year from hep C-related liver disease and liver cancer is on the rise. We can turn these figures around by rapidly increasing the numbers of people accessing treatment and cure,” says Stuart.
“NSPs and their staff can and should be the drivers of information and the cheerleaders of the new treatments for the many thousands of people with hep C who use their services.”
– Gideon Warhaft