Open Letter to Minister for Health - It's time for new hep C cures.
Twenty-seven health organisations have sent the following letter to the Health Minister, Hon. Sussan Ley MP.
Dear Minister, (Hon. Sussan Ley MP)
Time for New Cures – Time to list new hepatitis C medicines
It is rare that a government has the power to change the course of an epidemic but that is the historic opportunity available to you and your colleagues.
Australia is at a crossroads. Down one path lies escalating rates of liver disease and death. Down the other, there is an opportunity to make hepatitis C a rare condition in our lifetime.
Minister, the organisations which logos appear on this letter acknowledge your commitment to improving the lives of Australians and reimbursing new therapies that treat conditions ranging from cancer to eye disease. As such, we urge you expedite price negotiations and confirm the addition of new breakthrough hepatitis C medicines on the Pharmaceutical Benefits Scheme without delay.
These new treatments cure hepatitis C and represent a lifeline for many people. Yet despite being recommended by the Pharmaceutical Benefits Advisory Committee six months ago, these medicines are still awaiting consideration by the Federal Cabinet.
With exceptionally high cure rates, shorter treatment duration and fewer side-effects than existing therapies, interferon-free medicines hold the key to preventing liver cirrhosis, liver cancer and liver failure – not to mention halting the rising death toll associated with untreated hepatitis C.
As you know, treatment rates remain lamentably low. Only one per cent of the 230,500 Australians living with hepatitis C are treated each year. This puts thousands at risk of progressing to serious liver disease.
Of further concern are reports by liver clinics that hepatitis C treatment rates have plummeted again as more and more people find themselves in a treatment limbo.
Sadly, Australia can no longer regard itself the “lucky country”; not when people with hepatitis C are being cured around the globe – from the United States and Great Britain to Egypt and India. Increasingly, desperate Australians are being forced to travel overseas, or take the risky course of importing medicines because these new therapies remain unaffordable in Australia.
Minister, it’s time for action. It’s time for you to intervene and bring the Department, the pharmaceutical companies and the Cabinet together to deliver the cures for which so many Australians are desperately waiting.
We implore you to embrace a new treatment era, to confirm a PBS listing date and make 2015 a watershed year in the fight against hepatitis C.
Helen Tyrrell - CEO Hepatitis Australia
24 September 2015
On behalf of the twenty-seven organisations listed below.
Aboriginal Sobriety Group
Anglicare – Tasmania
Australian Federation of AIDS organisations
Australasian Hepatology Association
Australian Injecting & Illicit Drug Users League (AIVL)
Australian Research Centre in Sex Health & Society
Australasian Society for Infectious Diseases
Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine
Centre for Social Research in Health
Gastroenterological Society of Australia including the Australian Liver Association
Haemophilia Foundation Australia
National Aboriginal Community Controlled Health Organisation
National Association of People with HIV Australia
Northern Territory AIDS and Hepatitis Council
Peter Doherty Institute for Infection and Immunity
Tasmanian Council on AIDS, Hepatitis and Related Diseases
Uniting Care Wesley – Port Adelaide
Tragic cost of delaying access to new cures revealed
Hepatitis C Related Deaths
Nearly 3,000 Australians with hepatitis C have progressed to severe liver disease in the last year, as thousands continue to wait for affordable access to curative medicines recommended for a government subsidy six months ago.
Severe fibrosis/hepatitis C related cirrhosis
New surveillance data released by the Kirby Institute reveals the number of Australians living with hepatitis C-related severe liver disease more than doubled in ten years (from 18,582 to 44,730) – 2,800 in 2014 alone. The analysis shows that hepatitis C is the leading cause of liver transplantation in Australia and accounted for an estimated 690 deaths in 2014 – a 146 per cent increase in deaths over a ten year period.
The HIV, viral hepatitis and sexually transmitted infections: Annual Surveillance Report is available from the Kirby Institute.
Get a copy here >>
Recommendations alone will not avert a liver disease epidemic
The Federal Government needs to list new hepatitis C medicines on the Pharmaceutical Benefits Scheme (PBS) without further delay, according to the peak body representing the interests of a quarter of a million Australians living with the liver-destroying virus.
Responding to the latest round of Pharmaceutical Benefits Advisory Committee (PBAC) recommendations, Hepatitis Australia CEO Helen Tyrrell said a total of four* groundbreaking curative hepatitis C therapies have now received the green light for inclusion on the PBS but so far no listing date has been confirmed.
“It is a completely unacceptable situation. Recommendations alone will not cure anyone. It’s time to act on the advice of the experts and add these medicines to the PBS,” Ms Tyrrell said.
Importing Medicines and the Possible Risks.
Hepatitis Australia is aware some people have purchased, or are looking to import medicines from overseas for the treatment of hepatitis C. Hepatitis Australia advises caution and recommends you consider the information provided in our new factsheet 'Importing Medicines into Australia' carefully. You can download a copy or read the information online.
Hepatitis C Treatment Webcast - Now online!
If you missed our webcast on the 30th July it is now available to view online. The webcast, presented by Kevin Marriott and Prof. Greg Dore, provides the latest information about new treatments for hepatitis C and where we are up to with access to these medicines in Australia.
World Hepatitis Day and it's #TimeForAction
"I am so busy worrying about dying that I've actually forgotten that I need to live," Jane Kibble
On 28th July, World Hepatitis Day, an urgent call for government action to better equip half a million Australians living with viral hepatitis in combating life-threatening liver disease was issued by peak health groups.
Calling for increased testing, improved access to liver check-ups and rapid access to new therapies, Hepatitis Australia and the leading state and territory hepatitis organisations warn that 1,000 Australian lives are lost each year due to hepatitis-related liver disease, and without urgent action, deaths from viral hepatitis will increase.
Speaking on World Hepatitis Day (WHD), Hepatitis Australia CEO, Helen Tyrrell said that Australia must never lose sight of the fact that hepatitis B and C are preventable, treatable liver health conditions.
The Silent Disease - Inquiry into Hepatitis C in Australia
The House of Representatives Standing Committee on Health has tabled its final report following a Parliamentary Inquiry which commenced late 2014. Hepatitis Australia thanks the Committee for their comprehensive report, which included input from more than one hundred submissions and five public hearings allowing many people to make their voice heard.
Hepatitis C Treatment Update
We have just updated our fact sheet covering all you need to know about current treatments for hepatitis C and what is happening regarding new treatments. Check it out now and download a copy.
If you would like to see what Hepatitis Australia has been doing to highlight the need for access to the new treatments you can find out here.
Prison-based needle & syringe program doomed without government leadership.
1 April 2015 - The ACT Government is being urged to show political leadership and retain control over the introduction of a needle syringe program (NSP) at the Alexander Maconochie Centre – ACT Prison as a means to prevent the spread of blood borne viruses.
Hepatitis Australia and Hepatitis ACT are urging Corrections Minister Shane Rattenbury not to allow the Community and Public Sector Union the right to veto the introduction of the planned needle syringe program, saying this would “spell the death knell for good public health policy”.
You can also donate directly to Hepatitis Australia. Please contribute to our aim of a world without viral hepatitis by making a tax deductible donation. Find out more
Hepatitis Australia is a non-government, not-for-profit organisation that became incorporated in 1997. We do not provide services to individuals. To locate hepatitis services in your area visit the services page or call the Info line on 1300 437 222. Our members consist of the state and territory hepatitis organisations and other key services providing hepatitis services.
Page Updated: 29 June 2015