New hope for hepatitis C sufferers
Story: Andrea Close
If you’ve ever had the flu, you know how horrible it makes you feel – nausea, vomiting, aches and pains, sore joints, lethargy and the rest of the miserable lot.
For many Australians who live with hepatitis C, symptoms like these along with a range of others can affect their quality of life, and if that weren’t bad enough, sufferers are often subjected to poor treatment due to the stigma attached to the disease.
'How did you get it?' is often the first question a sufferer is asked if they disclose they have the condition. It’s an impulse others cannot seem to resist.
Hepatitis C has a bad rap – dirty needles, dirty blood. Being stigmatised, including self-stigmatisation, is a problem for many who have the disease, largely because sixty per cent of newly acquired hepatitis C infections within the last two years were the result of unsafe injecting drug use.
Whether drug users or not, sufferers often experience discrimination within the healthcare system, in the workplace and in social environments.
Mr Grenville Rose, who has hepatitis C, told the committee that reactions can be confronting.
“The day I was diagnosed was one of the worst days in my life, but my partner and my family gathered around me to give support. I am extremely lucky to have had that. Many people get a very different reaction from friends, family and employers. Sometimes people are simply shunned by those who were previously closest to them.”
Hepatitis C is a blood borne virus, so for those who have not contracted it via unsafe injection, the most likely causes are through unsterile tattooing or body piercing procedures, unsterile medical procedures or vaccinations, or other forms of exposure to infected blood. The virus can also be contracted through sex, although this is rare.
The number of hepatitis C cases is rising, with around 230,000 Australians currently living with the disease. Without successful treatment, it can cause liver disease including cirrhosis, cancer, liver failure and the potential need for a transplant. Deaths from primary liver cancer in Australia are rising faster than for any other type of cancer, having tripled between 1982 and 2007.
Current treatment efficacy is frustratingly limited with dreadful side effects for many, but new and more promising treatments are emerging and giving hope to sufferers.
The House Standing Committee on Health is undertaking an inquiry into hepatitis C in Australia, and community support groups and medical experts gave evidence in January. The committee is looking at the prevalence of the disease in Australia and the early testing and treatment options available, along with the costs associated with treating the short- and long-term impacts of hepatitis C in the community. Methods used for the prevention of new infections and ways of reducing the stigma associated with a positive diagnosis are also being investigated.
The Department of Health’s Fourth National Hepatitis C Strategy 2014–2017 (the Strategy) sets the direction for coordinated action over the next four years to achieve the targets of reducing the incidence of new hepatitis C infections by 50 per cent and increasing the number of people on treatment by 50 per cent.
In 2012 in Australia, 10,114 new cases of hepatitis C were diagnosed. However, despite the high diagnosis rate, it was estimated that only one per cent of people with a chronic infection accessed treatment in that year. This is partly due to the serious side effects of the current treatments, which often make sufferers feel even worse.
The Department of Health's 2013-14 annual report notes: 'Meeting the targets under the Strategy will be a considerable challenge for the department and all partners to the Strategy.'
Professor Geoff McCaughan, Chair of the Transplant Society of Australia and New Zealand, and the Australian Liver Association, compares the disease with HIV.
“The difference between HIV and hepatitis C is that HIV essentially hides from the immune system. To put it in a World War I analogy, HIV goes down into the trench while hepatitis C sits up at the trench and actually fights the immune system to try to establish dominance over the immune system.
“So the immune system is always attacking the hepatitis C virus but because of its very nature it mutates. By varying its sequences, through quasi-species, it escapes the immune attack all the time.
“That leads to a situation where the virus becomes established in the host, or the human, and the immune system can no longer recognise it, if you like, over a period of time, and it continues to replicate. But the immune system continues to try to fight it, and that is what damages the liver,” he said.
Stopping the spread of the disease is clearly difficult, particularly when many are unaware of being infected. Put a number of infected people together in a confined space and the spread of infection is almost impossible to stem. Due to the epidemiology of hepatitis C, its prevalence is disproportionately higher among people in custodial settings, due primarily to a high rate of unsafe injecting drug use in prisons.
Aboriginal and Torres Strait Islander (ATSI) peoples are over-represented in the statistics. Forty three per cent of ATSI people in custodial settings who have been screened are infected with hepatitis C, compared with 33 per cent of non-Indigenous detainees.
Following the inquiry’s terms of reference, the committee is investigating such evidence and Chair of the Health Committee, Steve Irons MP (Swan WA) expressed concern.
“The prison environment is the highest risk area for transmission…because it is probably a bit of an incubator for hep C,” Mr Irons said.
Australian prisons, which are managed by the states and territories, do not have needle and syringe programs (NSPs) which are an important element of the prevention strategy, and the very nature of the prison environment makes monitoring and management difficult.
The Strategy was agreed to and endorsed by each state and territory health minister, as well as the federal minister, with all having input into it. However, the continuity of care for people in custodial settings can be challenging as hepatitis C treatment requires coordination between justice and health systems.
Inquiry witness Dr Mark Douglas recalled working briefly in the prison system when the implementation of NSPs was being debated.
“The resistance [to implement the NSP program] was not within government; it was within the correction facilities. There are a lot of practical barriers and I think we need to address the community and correction facilities to really get on top of that,” he said.
Professor Geoff McCaughan says current treatment for hepatitis C involves pegylated interferon therapy - a weekly injection undertaken for between six and 12 months.
“Cure rates using the current standard of care involving interferon vary between 50 and 75 per cent. However, their use is limited by significant toxicity, including frequent constitutional symptoms, mood disturbance and bone marrow suppression.
“Furthermore, many people are ineligible for treatment due to toxicity and many individuals refuse to be treated because of concerns about toxicity, meaning that current treatment rates are only about 4,000 patients per year. Patients with liver failure, the sickest of our patients, cannot tolerate current treatments and they currently have no treatment options,” he said.
Grenville Rose gave evidence at the inquiry that both rounds of interferon treatment he’s had have failed.
“Both gave me flu-like symptoms for the duration of the treatment. The second treatment had so many spectacularly varied side effects that it left me unable to work for 18 months.
“The virus I cannot seem to shake is slowly causing more and more problems in my life and after seven years in my current job, I am leaving paid employment. I am too tired to turn up for work every day, ” he said.
Ms Helen Tyrrell, Chief Executive Officer of Hepatitis Australia warned that over the next 15 years, the burden of hepatitis C infection is going to rise sharply.
“A tidal wave of serious liver disease is already approaching. In 2013 an estimated 1,600 people developed either decompensated cirrhosis, which is the most serious form of liver disease, or liver cancer—or they died as a direct result of their hepatitis C infection,” she said.
Ms Tyrrell said that early diagnosis and treatment is absolutely critical to eliminating further unnecessary deaths and improving the quality of life of those living with the disease.
Over the past year, new interferon-free treatments have been developed and she said that these, which are already available in some countries, are game changers.
“They will be able to cure virtually everyone and they consequently offer an unprecedented opportunity to reverse the current and future burden of disease.”
Ms Tyrrell said that in order to achieve the treatment targets outlined in the Strategy, the way treatment is delivered must be changed.
“In particular we have to move treatment out of liver clinics and into the community, and use GPs and specialist nurses to deliver the vast majority of treatment. This will assist treatment to become more patient focused and will also release time within the liver clinics to enable the more complex patients to access specialist care,” she said.
The inquiry has heard that new treatments, when combined with high-quality harm reduction approaches including opiate substitution therapy and needle and syringe programs, show that hepatitis C can be eliminated by 2030.
Professor Alex Thompson, Director of the Department of Gastroenterology at St Vincent's Hospital said the new treatment regimens are highly effective, with cure rates greater than 95 per cent in most subgroups of patients.
“They involve simple combinations of pills that have few, if any, side effects. The treatments are of short duration, with most regimens involving only 12 weeks of treatment. All patients can be considered treatment candidates, including those with liver failure, with decompensated liver disease, as well as those who are intolerant of interferon due to toxicity,” he said.
Witnesses at the inquiry said that bringing a cure to people with hepatitis C has now switched from being a scientific issue to an economic one. The science is looking good but the new treatments are not yet approved in Australia.
The Australian government currently contributes to the management of hepatitis C in a range of ways: through the approval of medicines under the Therapeutic Goods Administration (TGA); by providing access under the Medicare Benefits Schedule to free or subsidised essential health services; and by providing access to affordable medicines through the Pharmaceutical Benefits Scheme.
Approval of medicines for the treatment and diagnosis of hepatitis C is managed by the TGA.
According to Hepatitis Australia delaying the new treatment to people living with the disease has fatal consequences. Each week, on average, 30 people living with untreated hepatitis C will progress to decompensated cirrhosis or liver cancer, or they will die.
A recurring theme in the hearings is that options for people living with hepatitis C have improved in the 15 years since the first National Strategy was formed. There are more resources available and more support for sufferers, yet Grenville Rose says it always comes back to stigma and treatment.
“Hepatitis C affects lives. It affects my life and the lives of all the people around me and all the people on this [hearing] panel. The older treatments are severe and not very effective. The newer treatments have a better side-effect profile and are much more effective. I am excited about them and I have not been excited about any of the treatments that have been offered since I was diagnosed in 1991.
“An effective awareness campaign to reduce stigma and discrimination amongst health professionals and the general population will improve the lives of people with hepatitis C, and I believe it will make money in both the medium and the long terms. Why wouldn't you do it?” he said.
The Pharmaceutical Benefits Advisory Committee is considering whether new hepatitis C treatments should be listed on the PBS.
The committee is expected to report to the parliament later this year.