In 2004 the Australian Government Senate Inquiry into Hepatitis C and the blood supply in Australia made 6 recommendations to respond to the issues raised during the Inquiry.
What were the outcomes of the recommendations?
Details of the outcomes are below the table.
Summary:
| The Senate Inquiry acknowledged that nearly all people with bleeding disorders were excluded from government compensation arrangements. | ❌ They recommended NO CHANGES |
| Recommendation 6 – an apology, a Lookback program, practical health and support services and a fund for financial support. | ❌ Largely NOT IMPLEMENTED |
| Recommendation 1 – mandatory reporting of diagnoses of hepatitis C acquired through the blood supply. | ✅ IMPLEMENTED |
| Recommendation 2 – establishing a national system to monitor adverse events (causing harm to a patient) relating to blood transfusion or donation. | ✅ IMPLEMENTED |
| Recommendation 3 – improved access to hepatitis C treatments | ✅ IMPLEMENTED |
| Recommendation 4 – recombinant (synthetic) factor VIII (8) and factor IX (9) products to be made available in Australia. | ✅ IMPLEMENTED |
| Recommendation 5 – a national hepatitis C awareness campaign (prevention, testing, treatment). | ✅ IMPLEMENTED |
Recommendation outcomes in detail
The Senate Inquiry acknowledged that nearly all people with bleeding disorders were excluded from government compensation arrangements.
❌ They recommended NO CHANGES
The Senate Inquiry acknowledged Haemophilia Foundation Australia (HFA)’s statement that nearly all people with bleeding disorders were excluded from current government compensation arrangements. However, the Senate Inquiry Committee did not agree to extending compensation arrangements to include them.
‘5.40 The Committee is also aware that the criteria precludes many people suffering from haemophilia from accessing the compensation arrangements as it is difficult for those using blood products manufactured from many pooled donations to identify accurately the product which transmitted the infection.
5.43 The Committee considers that extending the current compensation arrangements is not in the best interests of those people who have acquired hepatitis C through blood and blood products. The Committee considers that the most effective way to assist this group of people with hepatitis C is to improve access to services, to improve education of medical personnel and to support research efforts to develop more effective treatments for hepatitis C.’
Recommendation 6 – an apology, a Lookback program, practical health and support services and a fund for financial support.
❌ Largely NOT IMPLEMENTED
‘6.134 That a national post-transfusion hepatitis C committee be established as a priority with the purpose of:
- formulating, coordinating and delivering an apology to those who have acquired hepatitis C through the blood supply;
- establishing an effective Lookback program; and
- improving service delivery through a case management approach that ensures that appropriate medical, counselling and welfare services are provided, sensitive to the needs of people who have acquired hepatitis C through blood and blood products.
That membership of the committee include representatives of the Commonwealth, State and Territory Governments, the Australian Red Cross Blood Service, representatives of organisations which support people with hepatitis C acquired through the blood supply and individuals who have acquired hepatitis C through the blood supply.
That the committee establish and manage a fund to provide financial assistance for costs not covered through existing services, which could include the costs of visits and transport to general practitioners, prescribed medication and surgical aids, dental, aural, optical, physiotherapy and chiropody treatments, home care and/or home help, and alternative medical treatments, to the people who have acquired hepatitis C through blood and blood products.
That the committee, and the fund it establishes, be jointly funded by the Commonwealth and State and Territory Governments.’
One outcome was that Lifeblood now has a national Lookback program, which investigates transfusions that occurred in the last 20 years. However, the risk period for people with bleeding disorders was prior to 1993, which means it is not covered by the current Lookback program. The Australian Haemophilia Centre Directors’ Organisation (AHCDO) and HFA have serious concerns that some people with mild bleeding disorders who are not in contact with a Haemophilia Treatment Centre may have hepatitis C and not know.
Recommendation 1 – mandatory reporting of diagnoses of hepatitis C acquired through the blood supply.
✅ IMPLEMENTED
‘6.21 That the Australian Health Ministers’ Advisory Council consider the introduction of mandatory reporting to the Australian Red Cross Blood Service by State and Territory health authorities of instances where a person is diagnosed with hepatitis C and it is judged that the infection was contracted through the blood supply.’
Lifeblood advised that mandatory reporting of transfusion-transmitted hepatitis C was implemented in approximately 2005, but that most cases were already being reported in practice before then.
Recommendation 2 – establishing a national system to monitor adverse events (causing harm to a patient) relating to blood transfusion or donation.
✅ IMPLEMENTED
‘6.28 That, in order to ensure the safety of patients and continued confidence in the blood supply, the Australian Council for Safety and Quality in Health Care and the National Blood Authority implement, as a matter of priority, a national haemovigilance system.’
The National Blood Authority (NBA) now operates the national haemovigilance reporting system to collect haemovigilance data from the state and territory programs. Data is collated and reported nationally. The NBA was established in 2003. The national reporting system commenced in 2008 and all states and territories were participating by 2015-16.
Recommendation 3 – improved access to hepatitis C treatments
✅ IMPLEMENTED
‘6.66 That the Commonwealth review the criteria access to S100 drugs for those people suffering from hepatitis C to provide for greater access.’
In 2016 new highly effective Direct Acting Antiviral treatments for hepatitis C were made available to all Australians with hepatitis C. They are listed on the Pharmaceutical Benefits Scheme and treatment can be initiated by general practitioners and nurse practitioners as well as in specialist hospital outpatient services such as liver clinics – Models of care for the treatment of HCV infection in Australia – HCV Guidelines
Recommendation 4 – recombinant (synthetic) factor VIII (8) and factor IX (9) products to be made available in Australia.
✅ IMPLEMENTED
‘6.102 That the recommendations relating to the use of recombinant Factor VIII and Factor IX contained in the Report of the Working Party on the Supply and Use of Factor VIII and Factor IX in Australia be implemented as a matter of priority.’
In 2004 the Australian Government made recombinant factors VIII and IX available to all Australians with bleeding disorders, regardless of their age or viral status. This decision was made in the context of concerns about the potential for an epidemic of vCJD (variant Creutzfeldt-Jakob disease) through the blood supply and an HFA advocacy campaign.
Reference: Roberts A. Recombinant factor VIII and IX for haemophilia – success at last; discrimination to end. National Haemophilia Oct 2004;148:1-3.
Recommendation 5 – a national hepatitis C awareness campaign (prevention, testing, treatment).
✅ IMPLEMENTED
‘6.109 That the Commonwealth fund a national hepatitis C awareness campaign to increase the public’s knowledge of hepatitis C and that such a campaign emphasise all the means by which the infection may be acquired and the need for early testing and treatment.’
The Australian Government Department of Health and Ageing funded the Australian Hepatitis Council to conduct a National Hepatitis C Treatment Awareness Week campaign in 2005. This became a broader prevention and treatment awareness campaign by 2006-7 and has since developed into the World Hepatitis Day campaign. Haemophilia Foundation Australia has been a partner in these awareness campaigns since their inception.