T.R.A.I.D.S. (Transfusion AIDS)
Address by Mrs Lorraine Cibilic
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
I’ve been asked to speak today as a person who has medically acquired AIDS and as a helper with the TRAIDS group. In this talk I’d like to give a personal account of what it is like living with AIDS, share with you some experiences I have gained from helping other families with AIDS and point out some examples where improvements can be made to our approach to this whole issue. I’m grateful for this opportunity to speak at this summit and for the first time have “experts listen to me”. The medically acquired AIDS group in NSW outnumbers all the other states in total. However, when our cases were first being identified our group encountered antagonism and rejection, with opponents concentrating on descriptions like “innocent” and “angry”, rather than addressing our medical, emotional and financial needs.
I received infected blood in 1982 after a car accident. Over 120 units of blood were needed to save my life, approximately half of which were donated by family and friends called in when warm, fresh blood was required. As a blood donor prior to the accident, I recall how important it was to me to be well when donating blood to save lives, to the point where I refrained from, donating blood when I had a cold. I took the responsibility very seriously. I was unaware that donating blood to the Blood Bank was used by people to test themselves for diseases such as VD and hence naive to the fact that a blood transfusion could also transfuse a disease.
I was diagnosed with HIV in early ’86 and after diagnosis my life changed dramatically. The trauma and upheaval in one’s life is sometimes unbearable. It has meant drastic lifestyle changes such as not being able to have more children and loss of normality to one’s sex life. Not only is this a death sentence, but one becomes infectious for life, not one day or one month but for life and because of this one is always nervous whether medical and health services will be sympathetic or not when they’re sought after. Also along with this disease comes the stigma of AIDS which seems to affect the men in our category worse especially when they are repeatedly asked “Are you homosexual?”, “Have you had sex with a male’?.
When the news of AIDS hit I became convinced that with my history of 120 units of blood that I was high risk. At the time I had to ask my doctor on many occasions for a test before I finally convinced him that I was high risk and needed to be tested. His apathy was indicative of the attitude of the authorities at this time. They argued that the risk of HIV being transmitted in this way was very small. When I discovered that I was in fact positive and became acquainted with two other ladies in similar situations, it became obvious to me that there must be alot more people infected through this mode that didn’t know.
We set about trying to warn the public and encourage testing for the high risk, but the authorities and the Blood Bank in particular refused to hear or accept that every recipient pre ’85 was potentially carrying HIV. The Blood Bank used it’s vast resources to dispute our claims and it wasn’t until 1988 that a public campaign was initiated to encourage recipients of blood pre ’85 to be tested. It soon became apparent that there were lots of these people and due to the sluggish nature of the Blood Bank to acknowledge the dilemma these HIV carriers had become HIV spreaders to husbands, wives and children during this time. There is no doubt in my mind that if the Blood Bank was not so slow to move, lives could have been saved. This has been a tragic lesson and one which authorities and the Blood Bank should put into practice today. They must promote the use of one’s own blood for transfusions if possible and warn the medical profession and the public of the risks that exist even today with a blood transfusion. One never knows when the next epidemic will arrive.
Once we learnt of our infection it was very difficult to obtain information and support. After making inquiries we learnt of the Albion St Clinic and after visiting this clinic we realised it was mainly geared for the homosexual community. The environment was one which we were unaccustomed to and we all, but especially the men in our group, had unpleasant encounters at this clinic. There was definitely a need for a support network catering specifically to our group which consisted mainly of heterosexuals and their families. The homosexual community had done a marvellous job setting up their support framework with the funds allocated and the authorities especially State Government failed to recognise that our needs were different and expected us to use the same support network. It was very disappointing and saddening that the Blood Bank which was directly linked to all of our group and well aware of our situation, didn’t make an effort to utilise their vast resources to help us cope especially in those early days. I felt that they avoided us because they were concerned about the legal implications if they helped us i.e. they would be admitting liability. It must be remembered that NSW has more medically acquired HIV people than all the other states put together.
Finally the TRAIDS group was formed. and although there were some initial hiccups, currently it’s operations are satisfactory. Today some of it’s functions include: counselling, social support, treatment information, liaison and advocacy with government and other agencies. It is important that it maintains the ability to adjust to the changing needs of the people it supports especially as their disease progresses. TRAIDS has contributed to uniting the people with medically acquired HIV and the formation of friendships between these people. These friendships have served to create an atmosphere of counsel and support enabling the TRAIDS employees – to devote more of their time to the people in greatest need.
Even though TRAIDS fulfils it’s purpose as a support network there is still a need of financial assistance for people with medically acquired HIV. As has occurred in other states and countries and as was recommended by the Social Issues Committee, our group has claim for financial help from the State Government. This help has yet to arrive as the State Government fails to see the urgency of the situation as people are dying and leaving children behind. I implore the Government to act soon.
I can understand doctors being apprehensive when it comes to treating us especially surgeons and when I hear of doctors that decline from providing services I console our people by saying that it is our job to seek out doctors that are comfortable treating us and I try o get these patients to understand the doctor’s feelings. However there are areas where doctors and medical workers can improve the services they provide in respect to us. These are, and I have listed them in point form:
- Familiarise yourself with transfusion risks and warn your patients.
- Place more emphasis on healthy lifestyle as part of treatment.
- Warn people that although they have a right to confidentiality, practical considerations to themselves and others dictate that it is not achievable, and so, don’t be surprised when the pharmacist asks you “Your suffering from AIDS?” as he or she hands you your AZT and Bactrim, or when health care workers make similar remarks when they see the yellow “high infectious risk” sticker on your file as it goes around the hospital.
- Ensure patients starting AZT are fully aware of all the side effects eg loss of taste and smell is not often mentioned, it’s efficacy, method of administration and what I mean by that is, (When to take it and what with ?) because this often minimises the nausea, vomiting etc.
- When a person tests HIV positive make sure that they are told person to person and not on the phone.
- Don’t put specific times on life span e.g. 12 months to live because from what I have seen this often affects the patient’s state adversely and who knows they may succumb to something else anyway which I have seen happen.
- Keep the patient informed and allow the patient to be in control of when it comes to deciding on treatments etc.
In summary I feel that the earlier one identifies a HIV carrier the better. That person can then make adjustments to his or her lifestyle to ensure the virus is not spread and also take measures to preserve one’s life as long as possible. I hope that by speaking here today I will help you, the policy makers “get it right”. It seems to me that since the virus can not live outside the body, there is a chance of eliminating it but that depends on identifying all carriers of the virus and bring about modification of their lifestyles to stop spread. When you decide on education and health policy In relation to this disease, this must be a fundamental objective kept always in mind.