Ms Jennifer Ross
Executive Director of the Haemophilia Foundation of Australia
Conference Paper: AIDS – Have we got it Right?
A conference organised by The Australian Doctors Fund Ltd.
Hosted by Professor Fred Hollows & ADF Chairman Dr. Bruce Shepherd
Sheraton Sydney Airport Hilton
May 14th and 15th, 1992
Words that mean different things to different people, depending upon the perspective from which they stand. For a person living with HIV, AIDS programmes can never be “right”. Provision of all the services, and education that unlimited funds could allow will still not take away the virus and its terrible ramifications for the person with HIV, their family and immediate friends.
I would like to comment briefly on Australia’s stance in combating this virus in general, before moving on to speak from the perspective of people with haemophilia.
In general the Australian Government’s response to containing the spread of HIV has been outstanding. It was clear as I attended International AIDS Conferences in 1986, 87, 88 and 89 that Australia, together with the Netherlands, was at the forefront of the fight against this virus. Participation in World Health Organisation Global Programme on AIDS workshops with a wide range of participating nations in 88 and 89 confirmed this.
From 1984 the Australian Government:
- Initiated immediate action through its National AIDS Task Force and National Advisory Committee on AIDS (HACAIDS) in a wide range of areas.
- Funded and supported community groups representing. those cost affected, enabling them to provide peer education and support to their members.
- Identified sensitive issues, for example the need for needle/syringe exchange programmes.
- Was willing to ‘bite the bullet’ and move on these issues in the face of public opinion.
As a result we see in Australia today:
- A levelling of transmission within risk groups, the best example being in the gay community.
- A lack of spread into the general community (as has taken place in the United States of America).
- Reasonable services for those with HIV and HIV illness.
The obvious contrast to our situation is the USA, where programmes and services were delayed over many years. The results are thousands of infections in the poor, particularly in the black community. The USA health care system cannot and will not be able to cope with the outcome of this slow Government response to HIV.
Sadly, it appears we in Australia are to be penalised for our success. High profile Australians like Fred Hollows and Philip Adams, while working towards the same objectives as Governments and community groups, tear down public confidence in the need for education programmes.
This is dangerous indeed, as complacency will replace questioning in our young people, and funding for the education needed to protect them will be withdrawn. As with the complacency that has followed successful inoculation programmes for young children now seeing a reappearance of some of these childhood diseases – complacency in educating our young about STDs/AIDS will result in further transmission, including transmission into the general community.
To date Australia has been a world leader in HIV programmes. All leadership roles must involve occasional mistakes and inappropriate actions. However, overall Australia’s actions have well and truly been taken in the right direction. We do not want to stumble now.
It is particularly necessary to step up our education programmes in view of this particular time in the epidemic, as people are now and will be more at risk in the coming years. (Expand these comments later as I move to the haemophilia perspective.)
Have We Got It Right For The Haemophilia Group?
‘It’ can never be right for infected members of the haemophilia group. All we can offer is the best possible education and a range of care and support services to help deal with these devastating circumstances.
People with haemophilia are a small minority group. In total our number of HIV infected people – some 260, looks small in the total HIV picture. However, our group is, in fact, the most affected – with some 30% of people treated for their haemophilia between 1980 and 1984 being infected with HIV. 55 people have now died. Haemophilia is, in itself, a painful and debilitating disorder. Being hereditary we have multiple HIV infections in families, and the identifying nature of haemophilia means that all our families, with or without an HIV infected member, are affected by HIV.
Our families are trying to cope with haemophilia, HIV, fear, guilt, anger, deceit, stigma, and the loss of normal sexual relationships, marriage, children, grandchildren and living standards. All of this must be dealt with in isolation – the isolation brought by HIV, due to the fear of community attitudes.
While, in Australia, Government programmes have contained the spread of HIV, they are yet to find the key to providing education that will result in the community being accurately informed enough to have the appropriate attitudes towards HIV and people with HIV that will allow HIV to be accepted as other life threatening illnesses.
How Is The HFA Dealing With HIV?
Let’s look at the following questions:
- What Government support has been provided to people with haemophilia and HIV?
- What is the effect of education provided to infected people and families?
- Why do we need to make even greater efforts with education and support now?
- Where does the Haemophilia Foundation of Australia (HFA) sit on the “political” HIV agenda?
- What are the future requirements of the HFA if it is to meet the needs of its HIV affected members?
What Government Support has been Provided to People with Haemophilia and HIV?
Feelings about the Government and Government support to people with haemophilia and HIV are mixed.
For many of our group the Government was seen to move too slowly to protect the Blood Transfusion Service, resulting in their infection. A lack of communication and consultation with our group in the very early days, prior to November ’84, is still resented.
However, the immediate support provided to our group (especially by the Federal Government) since then, has enabled the HFA, and later local Haemophilia Societies, to provide many services to people with haemophilia and HIV and their families, particularly in the areas of:
- Improvement of haemophilia treatment (and HIV treatment) around Australia.
- Establishing haemophilia support groups, now in every State and Territory.
- Provision of accurate information on haemophilia and HIV to members and health professionals.
- Establishing counselling services for haemophilia groups in every State.
- Facilitating supportive programmes such as camps and workshops for people with haemophilia and HIV – young men/parents/couples.
Participation by the HFA on national committees/councils was also of great value to the group, not only for keeping us and the Government in touch with each others problems and information, but also for the invaluable networking established between Government and representatives of all affected groups.
Unfortunately, since 1990, the HFA has not been included on these committees. Medically acquired HIV has never appeared at plenary sessions at Australian AIDS Conferences, and we are often not included in other meetings on HIV issues. Even at this Summit our position is clear. Both groups – medically infected with HIV appear at the end of this long programme, with five minutes less to present than other speakers. Our concern about this is strengthened when we find basic HIV information from Government not reaching our organisation, and know that at times our communication with both Federal and State Health Ministers/Governments have been blocked or delayed at bureaucratic level. As a result we also have fears for our AIDS funding as the five year white paper term draws to a close in June next year.
There is a growing feeling within the haemophilia group of being abandoned, of Governments waiting for the death of our HIV infected members.
What is the Effect of Education Provided to Infected People and Families?
Trying to reach people with important messages in a way that relates to them and at a time they wish to listen is extraordinarily difficult.
The community can be compared to the swing of a pendulum, scattered from end to end – all at varying stages of reception and readiness for educative messages. The trick is to have the pendulum arrive at each person at a time that is meaningful for them.
We believe that by using a combination of monthly newsletters, specific brochures, individual and family counselling, and workshops and camps – we have brought educative messages to the majority of our group. Information provides a feeling of control and as a result some comfort for people something small we have to offer. It is difficult to assess how this information has affected behaviour change towards protecting sexual partners.
However, in quantitative terms it is interesting to note that as a result of the Government funding and education provided by the HFA, the transmission rate of HIV to sexual partners in the haemophilia group is less than 3%, with the majority of these people being infected before they knew of the virus. By contrast, in the USA, transmission rates to sexual partners is between 10 and 25%. So much for conservatism and delicate feelings. It is lives we must save and families we must protect from devastation.
To raise a parallel to a point made earlier – the HFA hopes it is not to be penalised for its relative ‘success’ in containing sexual transmission. We fear the growing lack of Government interest in our group could be based on this fact.
Why do we need to make even greater efforts with education and support now?
To paraphrase Gough Whitlam, we must “maintain our education”, both within the infected groups, and in the community.
In 1987, the Washington International AIDS Conference confronted the haemophilia group (and others) with two graphic messages.
- Time is the only co-factor in progressing to HIV illness/AIDS
- It was the sexual partners of men with haemophilia who had progressed to (old) AIDS or ARC who were being infected almost exclusively.
A clear message comes from these facts. While people with HIV are infectious for life, they are more infectious when there is more free virus in their system, that is at the point of seroconversion and when their immune function levels drop and symptomatic illnesses appear.
Referring back to my comment about people in Australia being more at risk at this point in the epidemic – we take this message and put it together with time. The majority of people with haemophilia (and probably other infected people in Australia) were infected before 1984. They are now approaching ten years of infection. It has been established that at ten years 85% of people are symptomatic, with 50% having ‘AIDS’.
Figures presented recently in Victoria also paint a similar picture.
|80% HIV tests-in Victoria|
|Mean Age-at Diagnosis||31.66||30.38||31.57||32.44||33.39|
Discounting the first year we can see that the mean age of diagnosis increases by approximately one year each year. It appears that people were infected at much the same time but tested at different time intervals.
The hypothesis presented here is that there was a rapid spread of the virus around 1984 in the gay community as well as the haemophilia group. Eight to ten years on, people are about to get ill, and partners are at greater risk as people are, as outlined, also becoming more infectious to their sexual partners.
So now there is a greater risk of transmission. Now we must “maintain”, and if possible, step up our education. Complacency must not step in.
Where does the HFA sit on the “political” HIV agenda?
I have already discussed the relationship between Government and the HFA, mentioning the excellent support and liaison provided for some time, but our fears now of being put aside. How do we sit with the other AIDS groups?
People with medically acquired HIV (including people with haemophilia) are the only group not represented by the Australian Federation of AIDS Organisations, and are not, in general, affiliated with AIDS Councils. Why does this occur?
- Haemophilia groups were established prior to HIV/AIDS. AIDS Councils grew in response to the epidemic.
- Attempts to liais have resulted in discomfort for the most part. AIDS Councils welcome our interest, but have tended to have a stronger desire to have our name listed as part of their lobby group than to consult or use our input.
- A strong and viable liaison did take place at an informal level where and when the HFA was represented on AIDS committees.
- Representing people with haemophilia who come from across the whole spectrum of the community, we must recognise that some of our members react negatively to members from other groups who may have played a part in their (or most usually their child’s) infection.
- At the same time AIDS Councils have been most supportive to a few members of our group who have needed to seek their assistance.
- The major reason for our independence is that our needs are quite different from those of other groups including, for the most part, others infected medically with the virus. Haemophilia and HIV complicate each other medically and socially. Information must be targeted to recognise this and to acknowledge the involvement of our families.
The HFA is unhappy about the continuing use of the term “innocent victims” which is applied to people with medically acquired HIV. This term is never used by our National and State bodies in reference to our constituents. However, it is regularly used by people (or their representatives) who have been HIV infected by other transmission routes, or the media who see the words as emotive and eye-catching.
Emotive they are, and people with medically acquired HIV object to being “put down” constantly with this term. People in this group have medically acquired HIV and consider themselves as people with medically acquired HIV and we request in the strongest terms that all AIDS groups, the media and the general public describe our situation, and us, in this way.
The drive for financial assistance or compensation (call it what you will) by those with medically acquired HIV has highlighted the use of this term.
This issue has been used as a political football with mischievous misinformation printed constantly alluding to moneys and services for people with HIV in general being redirected to people with medically acquired HIV, all of which is quite untrue.
A complicated and sensitive topic, it cannot be debated here, but we suggest that the well represented members of other groups would also have sought compensation if their infection had arisen from a medical service. We also suggest that if HIV had only been transmitted medically, our members would have received financial settlements from Governments years ago.
Empowered by Government to advocate for our respective groups in our own way, on our own terms – it is unfortunate that some choose to use this issue to drive a wedge between groups already fighting a much bigger common enemy. Part of the problem here has arisen from the breakdown in networking. Much can be resolved informally when people have an opportunity to talk regularly.
We realise medically acquired HIV is very low in the priorities of AIDS politics. In terms of our small group this is acceptable, so long as resources and support are not withdrawn, and our people left abandoned.
What are the future requirements of the HFA if it is to meet the needs of its HIV-affected members?
These are threefold:
- The HFA requires maintenance funding for its administration, organisation and its basic activities. (Our Resource Development Programme will then raise the additional funds for broader member services.)
- The HFA needs Government recognition of the needs of the group through continuing representation on AIDS committees, and inclusion in AIDS forums.
- Our members need an AIDS aware community.
May I remind you of Jonathan Mann’s three epidemics.
The first depicts the silent epidemic of the late 70’s, the second follows a similar path – the AIDS epidemic. The third is the community response to the first two. As you can see, it is erratic and out of control. Until we get this response right we will not reach people with the messages to protect them from being part of the first epidemic, and we will not have the resources to care for and support those who are part of the second.
Our sons, fathers, husbands and brothers are becoming ill and dying. Our mothers, daughters, wives and sisters are devastated. All of this in the isolation from friends, extended family and community.
“AIDS – Have We Got It Right?”
In many ways we have – as right as possible, illustrated by the:
- Australian Government response, which has provided
- Assistance and support to infected groups, leading to
- Peer education of their members, which has been particularly successful,
but for our members (along with others infected by this virus, until the community accepts and deals with people with HIV as it does with people who have other life threatening illnesses – we have yet to get it truly right.