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SENATE COMMUNITY AFFAIRS REFERENCES COMMITTEE - 12/08/1997 - CJD Settlement Offer

CHAIR —I welcome representatives of the CJD Support Group Network. In what capacity are you actually appearing today?

Mrs Wilson —I am here as Carol Wilson, not as the state coordinator of the CJD Support Group Network.

Mrs Byrne —I am here as the national coordinator of the support group.

Mrs Solvyns —I am here on my own behalf.

Mrs Brodrick —I am the Queensland coordinator of the support group, but I am here representing myself.

CHAIR —The committee has before it submission No. 24 from the CJD Support Group Network, submission No. 52 from Mrs Solvyns, submission No. 18 from Mrs Brodrick and submission No. 33 from Mrs Wilson. Do any of you wish to make alterations to those submissions? As the answer is no, I now invite each of you to make a short opening statement. At the conclusion of your remarks, I will invite members of the committee to put questions to you.

Mrs Byrne —Firstly, we are all very pleased to be here. We are delighted that the Senate committee of inquiry was established. I know that Senator Harradine was in favour of having one some years ago, but we were not in favour at that time because we thought then that the litigation was actually going to get up. Part of the point of the litigation was to have some sort of public airing of all the issues. We thought that would happen in the courtroom but it has not, so we welcome this hearing, which might well be our last chance to air some of these issues.

The basic point behind the inquiry is the settlement offer that was made by the Commonwealth to recipients, and whether it was fair and adequate. I think almost everybody in the support group would feel that it was neither fair nor adequate, largely because it completely ignored the grounds on which we were litigating. The litigation was about psychiatric injury due to the nervous shock of finding out about the risk of CJD. It was not about dying of CJD. In lots of ways they are two very separate issues. Those of us who were engaged in the litigation were surprised and shocked when the litigation came to such a screeching halt the day before we were supposed to be in court.

I have gone through the whole chronology in the submission. Just prior to that we had been asked to make a financial contribution. Between us we had put in $46,000. We were not obliged to do that because of the way the case was set up, but we all felt so strongly about it that, when we were asked for $750 each, almost all of us kicked in. People made enormous sacrifices--they borrowed from friends and family. People were thinking about cashing in their superannuation or selling cars just to support the litigation and to make sure that it did go ahead.

We found out on 4 April that it was not going ahead, and when we found out the terms of the settlement we were absolutely appalled because, in essence, it gives us absolutely nothing. We had no reason, and we still have no reason, to believe that, if anyone of us contracts CJD tomorrow, we would not be able to get pain and suffering compensation from the Commonwealth. Whether or not you have to go to a lawyer first is neither here nor there, really. The other cases that have already died have certainly had common law damages after they were dead. We had absolutely no reason to think that we would not be able to get that fairly easily.

The husbands did not have to go to court. They were very willing to go to court. They would have liked to have had the issues aired in a courtroom just as we would. They never got that chance because the Commonwealth leapt at the opportunity to settle before they got to the courtroom.

I do not think that any of us fear that the case would be heavily defended if we did in fact come down with CJD. There is nothing in the settlement for us. The only difference the settlement makes, if we accept it, is that we say that we will never take any legal action against the Commonwealth or CSL about any issue to do with CJD ever again. For a lot of people that is the rub, that is the real sticking point. They do not want to sign that release.

About 90 people have signed the settlement agreement already. Many of those 90 people feel very strongly that they were intimidated into doing so and did so very much against their will. I feel that something needs to be done for those people because, even if we are successful in getting a recommendation from the committee that legal aid should be made available to us and even if the Commonwealth decides to act on that and provide legal aid, those 90 people no longer have the capacity to sue the Commonwealth or CSL about anything to do with CSL. They are really out on a limb.

Some of those people are the very people who do have significant psychiatric injury and who can prove it quite easily. Their lives have been severely damaged by it. Because they are already severely damaged they were probably in the worse position to stand up to the Commonwealth and say, `You can take your offer and jam it,' which is what a lot of us said.

In the end you had to be reasonably brave or determined to stand up against the intimidation that we received. People were told that the sheriff could enter their homes and seize their goods if the Commonwealth decided to pursue them for costs. For most people that is a fairly terrifying prospect. People will say, `I don't have anything, we don't own our house, we don't have any savings, so the Commonwealth cannot get anything back from us.' But when you are told that the sheriff can knock on your door and come in and take the stereo, the TV, the kids' computer and all those sorts of things it is very intimidating and lots of people succumb to that sort of intimidation.

I might point out that it did not come from the Commonwealth or the AGS; it came from our solicitors, who abandoned us on the day that the test case settlement was signed. They decided that they were no longer going to act for us. They did not want to know about it. We got virtually no information from them from that date until the time the Senate inquiry was announced. There was no information forthcoming from them except that we had no choice but to settle--the only option was to settle.

If we did not settle then the Commonwealth would come after us for costs. `You can't do anything else; all you can do is settle.' That was the universal story that everybody got--it was exactly the same reaction. There was no advice as to alternatives. There were no other courses to follow. It was just, `The only thing you can do is settle. You have no choice. You must sign the release.' Numerous recipients will tell you that that was exactly the story they got whomever they asked at that firm.

Basically, I think we all feel that legal aid should have been available to us. If we do not fit the criteria, then we should because here we have a situation where ordinary Australians feel that a wrong has been done to them by the Commonwealth and its agencies.

The case has been tested. I think there were three preliminary hearings where the Commonwealth tried very hard to have the case struck out, to have it found not good at law. On all three occasions the court found that there was sufficient reason to go ahead with the litigation, that it was worth giving it a run to have it decided on its merits.

So it was not a weak case. It was not a worthless case. It was not a case without merit. It did essentially fail specifically because there was no legal aid. I think a lot of ordinary Australians look around them and see other groups getting legal aid and wonder why people like us cannot.

It is an extraordinarily expensive sort of case to run. I have had estimates of up to $1 million to run it. Given all the background work that needs to be done, the overseas witnesses and the case was going to run 15 weeks in the Victorian Supreme Court, it is not a cheap exercise. No Australian--with two possible exceptions, I suppose; Packer and Murdoch--could afford to run a case like that as an individual. You would have to have legal aid. It is not just a case about one person, it is not even a case about 2,000 people; it is a case about all Australians and the way their health system and the way the regulatory system works for them or does not work for them, as the case may be.

I think most recipients would like to see some sort of across-the-board compensation because for us it not essentially about and not only about the risk of dying of CJD. Because of the nature of the disease, because you cannot test for it, because you cannot diagnose it and because we know it is transmissible through organs and there is a suspicion that it might be transmissible through blood, we are treated as a public health risk. Realistically, the vast majority of us will never develop CJD, but for the rest of our lives we are treated as public health risks.

The Red Cross has a list of our names. We cannot donate blood. Even if we do not answer the questionnaire correctly, there is a double check and, if our names come up, then we are turned away. We cannot donate organs. There is a list with all the organ donation agencies so we cannot by any chance get through that one either. We have a special set of infection control guidelines written by the NHMRC which are incredibly worthy and a terrific safeguard to public health, but they certainly make our lives difficult.

You may have read in the support group's submission one of the addenda about the case history of a woman who had a baby in Perth eight months ago and about the horrific things that happened to her. She was treated as though she was high risk. She was treated as though she had CJD. She was treated as though her blood was contaminated. That was an extraordinarily unpleasant way to have a baby. What should have been a really joyful event for her and her family turned into a bit of an ordeal.

She ended up feeling like a leper. She felt as though she had something that everybody was very terrified of catching and that the hospital could not wait to get rid of her, basically. Everything was incinerated. All her blankets were incinerated when she left. It was just a complete over-reaction to those infection control guidelines.

That sort of thing happens to us all the time. We have letters from the health department that we can give to our health professionals. They are very good in their way because they save us from having to go through the whole story again and again. They give the decontamination details that those health professionals need, but people have very unfortunate experiences when they use them.

Again, you may have seen in the submission the case of a woman who had the ghastly experience of having her tooth pulled out by a dentist wearing a glove. He actually did it with his fingers. He said it was a new Japanese method. She was highly suspicious about the motives for that. Other people have actually been turned away from their dentist. The dentist said, `No, I can't possibly treat you in the surgery. You'll have to go to the dental hospital.' Other people having surgery or minor procedures in a doctor's rooms have been told, `No, we can only treat you on Friday afternoon at the end of the list because that's the only time we'll have time to do all the decontamination that we need to do.'

It is not the sort of thing that we can just move on from. If we could move on from this I think a lot of us would. But because of this public health status that we have we cannot move on and we cannot forget about it. We are not allowed to forget about it. I think a lot of recipients feel that some compensation is due for that. Obviously there is no damage in the way that the law sees damage, but I think all of us feel that our lives have been fairly severely damaged just by being in this group, just by having these restrictions placed on us. They are going to stay there until we die. When I finally check into the nursing home at 85, I am going to have to carry that damn letter from the Commonwealth telling them about the decontamination procedures. It is not a lot of fun, believe me. It makes aspects of life which for other people are quite ordinary much less than ordinary for us.

Carol has just reminded me that I had an unfortunate experience yesterday. Yesterday was a very busy day. I was on the radio, and somebody listening to that program recognised the treatment that his son had had. He rang me later in the afternoon. I had the unpleasant task of telling him that yes, I agreed with him. I thought it sounded as though his son had had the pituitary hormone treatment too. This boy is now 25. He is actually at the Australian Institute of Sport, so he has got to the top of his field. He is a very successful young man. He had a brother, but that brother died of leukemia when he was much younger.

This family that went through that tragedy and raised this son to manhood and to success now has this other huge shadow hanging over them. They have to tell their son now. The whole family has to work through it. We all know it is going to be a very painful process. It is a particularly painful process for those growth hormone families because not only does the person who had the treatment have the risk and the anxiety, the parents very often have huge guilt because they were the ones who decided that the child would go on the program. Very often they were the ones who actually gave the injections. It brought it all home having to explain to this man exactly what the ramifications were. Of course he did not know what CJD was, so I had to tell him. That is never a lot of fun. It is not a nice disease to explain to people. They are not looking forward to the task of having to explain it all to their son. You know that you have basically ruined that guy's day and that you are probably going to ruin quite a few months of the family's life. I will stop there and let the others have a go.

Mrs Solvyns —I was a non-litigant--not because this did not have a huge impact on my life, because it has, as I put in my submission but because I found it very hard to see how I could prove psychiatric injury. I guess I represent the majority of recipients. Out of the 2,000-odd, about 150 were litigants and the rest were not. I have concerns that this inquiry does take into account the non-litigants along with the litigants.

I know through my involvement in the support group that very many of the non-litigants have suffered as much if not more than some of the litigants. I think it needs to be made fairly clear that there are a lot of people out there who have suffered so much that they could not even face the fact of taking on a legal challenge. I think that is a point to make to you.

Of course, I have also had dealings through the support group with litigants. I think the pressure that has been put on those people has been atrocious. Most of those who I have spoken to who have settled are very upset that they have been forced to settle. They do not feel that they have done it by choice. They feel that they have been pushed into it. According to the New South Wales recipients that I have talked to, the risk of the costs that may have been awarded against them was the main motive for signing.

I also feel that those who have not settled have experienced great anxiety with the extension of time and the process of trying to get through each time and wondering what would happen. I guess this inquiry has been the godsend that has probably saved them from having to sign because everybody was quite frightened. Putting their families at risk of huge costs was quite devastating to many people.

Since settlement, the actual impact on the lives of recipients has been quite huge. I also have concerns about non-approved recipients. It has come to pass that no decision has been made on the Commonwealth even in terms of the settlement that has been given to recipients. No decision has been made whether this is available to unofficial recipients--that is, people who were treated by doctors in their rooms with leftover product and that type of thing. A lot of these people have medical evidence that they have been treated and yet at this stage the settlement does not extend to them. That is another concern of mine because many members of my support group are in that position. I want to point that out to the inquiry.

Mrs Brodrick —I thank members for the opportunity to speak in support of my submission to this inquiry. During the years since my HPG treatment I have been concerned and suspicious about the lack of information supplied. These concerns were raised by the media debate that followed the birth of my children. Subsequent events have revealed the risk of CJD and shown why so little was divulged.

In my opinion the settlement offer by the Commonwealth in the APQ test case was an affront to every HPG and every HPH recipient and a complete denial of natural justice. The health minister's statement following the announcement of the settlement was designed to trivialise the whole issue and only served to heighten the stress and the anger of all recipients. It did nothing to extend the measures put in place by Dr Carmen Lawrence following the Allars report findings and the extension of terms to people treated prior to 1977 is irrelevant.

Death from CJD is not a totally unlikely event. It has occurred in five known cases and since the settlement was announced another recipient has been provisionally diagnosed. On this basis alone recipients must remain under a very real threat and threatening is the best word I can use to describe the Commonwealth government's actions throughout the course of this issue. Following the announcement of the settlement on 4 April, recipients were offered just 14 days in which to accept its terms or risk potential financial disaster. Bullying tactics of this kind are unacceptable in any situation, more so when they are instigated by one's own government.

Complicit in the exertion of this pressure were Rennick Briggs, the solicitors retained to act on behalf of litigants. Rennick Briggs were allegedly paid $1,200 for every signature they obtained from recipients to release the government from any future responsibility. Those of us who chose not to be coerced were granted extensions of time. This I feel indicates the government's concern that it might not achieve the same outcome should this case ever be tried again.

Denial of legal aid was clearly the reason why APQ's test case did not proceed. Already the government had mounted, as Sue mentioned, and lost the three appeals. Obviously, they were delaying tactics by a defendant with unlimited resources. Denial of legal aid to recipients with a legitimate recourse to the legal system is, in my mind, unfair to the extreme. Furthermore, I cannot see how I or any other litigant could have been expected to make an informed decision regarding the settlement without access to all the relevant information. We were given little time, no information and just an ultimatum.

No-one from CSL--whose actions in harvesting the pituitary glands under completely uncontrolled conditions must border on criminal negligence--has ever been held to account. Nor have any members of HPAC, who sought kudos and career advancement ahead of prudent medical practice and patient safety.

The Allars report states that it was plainly an abuse of power that allowed HPAC to make special arrangements directly with the director-general of health and the minister, thus circumventing the Pharmaceutical Benefits Advisory Committee and ignoring its recommendations of 1964 and 1967. This resulted in the listing of hormones under section 100, an action which has been found to be legally invalid. If the correct protocol had been followed, it is quite possible that the program would never have been approved for human use without further investigation and stricter controls.

All who conspired to force this terrible legacy on HPGand HPH recipients are now being protected by a government and its officers who would rather see innocent recipients denied justice than admit to the ineptitude and negligence of those involved in producing these treatments and administering this program. The only humane and commonsense course of action is to now do what should have happened originally, and for the Commonwealth to make a fair, reasonable and voluntary settlement with all recipients.

I am in no doubt that the evidence available supports my belief that the government has a responsibility to make such a settlement with those of us who live with the very real threat that our lives could be shortened, through no fault of our own. This will save further waste of public money in defence of what has been a criminally negligent program that has already been responsible for several unnecessary deaths and has left the remaining recipients with the constant fear that any one of us could be the next victim.

CHAIR —Thank you. Mrs Wilson.

Mrs Wilson —Where do you start? When I first received my letter from the treating specialist, it took a week for the actual words of the letter to sink in. I was just numb. I tried very, very hard to contact this doctor but he was unavailable. I even made out I was a nurse and rang the hospital to try to speak to him. The minute I said, `I'm Carol Wilson, Doctor,' he hung up. I had not seen him for 25 years and yet, with the things that had occurred in the press and everything, he just hung up on me. And he was the man I needed to talk to, to ask the questions: `What has happened?' `Why are you telling me in this letter?' I cannot donate blood; I cannot donate organs. I needed answers and I could not get them, and that is what made us so frustrated. We could not get answers from any of the government departments. It was like butting your head up against a brick wall.

I rang England and America and spoke to professors and other people over there, asking for help and information to ease my mind and my family's mind about what this long medical word was and what it was going to do to me. I went to libraries and I tried to get information. We formed groups and started writing letters to see if we could get some answers. We made some good contacts and got some answers which, when we put them together, scared us a little bit more.

Each recipient knows what the other is feeling because we sat there and had those injections. Nobody else can understand exactly what you feel. You pick up the phone and say hello and there is another recipient at the other end of the phone. You know she is there because she is crying. She has probably just read something in the press or seen it on TV. It sparks it over and over again. Something will happen to you and you think, `My God, is this the start of this?' You will read of another death. Everything just goes over and over. We get no satisfaction.

Last year, my nephew had Alport's disease and needed a kidney, and everything happened very quickly. He went on to dialysis and all of a sudden we knew that there was a three-to-five year wait for a kidney to save my nephew's life. So the specialist from Melbourne decided that maybe a family member could donate a kidney and they did the tests.

The boy's father was compatible. So was I and I could not help him. That's what gets to you. I had to watch while my brother gave his kidney to his son to save his life and there was no way I could help either of them by giving an organ or blood. To me that is wrong. Why should I be made to suffer for somebody else's mistake? Why should I be penalised for the rest of my life and put through this garbage? Why can't somebody say to me they did wrong? They should be held accountable and be made to pay and, for God's sake, never ever do it again. Nobody should go through what we are going through, fighting for what we know is right.

I am innocent. I have not done a damn thing. But I am being made to feel so guilty when the lawyers say to me, `The government will probably come after you for their incurred costs.' Why? I have paid taxes. Why should I have to double dip again? Why should I have to put my family through all this? Many a night you do not sleep. The phone rings through the night. If somebody is upset they will ring. I have got in my car and driven for two hours to go and talk to somebody because I know what they are going through, and I have done that day after day and for the last four years.

Somewhere somebody has to make somebody accountable. The doctors who did it, when did they know? Why didn't they say something? Why was it allowed to continue? I wanted to ask my own specialist did he know. If he did, when did he know? We are told that they all knew in 1985, but they did not tell us for heaps of years after and then all you get is the letter: `Please do not donate blood. Do not donate organs. You may have this rare disease.' How would you feel if you got a letter like that? Maybe down the track if you have had a child on the program, who knows? They tell us no, it may not happen. How would you feel if you passed it to your child? I might not get it but the child might. You live with that.

Parents gave their children the growth hormone. I have a case down home where the mother and the son are fighting. I have been mediating between the two of them trying to get them to talk, but all of a sudden the son is just so angry. He blames his mother because she signed the paper for him to have the injections. Why should they both be put through it? It makes you wonder where it will all end, but I am damn sure it is not going to get me.

Mrs Byrne —What Carol and Geraldine were saying about accountability is extremely important to recipients. Above everything many recipients will say to you that this is not about money; this is about making people accountable. Reading the Allars report is a chilling experience if you are an Australian who thinks we have a really good health system with lots of checks and balances, that people cannot do things that are unsafe, that all clinical trials are regulated and that the left hand does know what the right hand is doing. Reading Allars is just horrific. It was really Dracula in charge of the blood bank after 1976.

Four people who were intimately involved with the program are actually controlling the program. The regulation of product is being conducted by somebody who works for the organisation who is controlling the product and who invented the process. There were no checks and balances. There was no independent review. There was no scope of expertise. It was a very narrow, a very self-interested group, who were running the Australian human pituitary hormone program.

As to whether they could have or should have known, the English verdict last year, a very conservative verdict, found that after 1 July 1977 those English doctors could have or should have known of the risk that they were transmitting to their patients. If English doctors in 1977 could have known and should have known, so should Australian doctors. If it is in the New England Journal of Medicine, if it is in the Lancet, if it is in Science and if it is in Nature then any person in control of the program like that, which is publicly funded, ought to be making himself aware of those pieces of information and putting them together for the protection of their patients.

None of the people on HPAC has ever been given any chastisement or any punishment. They have not lost a thing. Many of them are still in public funded jobs. They have chairs at universities and research institutes. They have NHMRC grants. This was not a long time ago. It was 1988 when they finally realised that they were no longer able to go and play with their pituitary hormones, that they had to put it away for good.

It is incumbent on somebody--presumably the Commonwealth--to bring some accountability to those people. If they are never made accountable, then they will have no reason for changing their ways, and other people in the same position will not have any reason to think that they should not go the merry way that HPAC did.

Senator LEES —I refer to the pressure to sign and to agree. I want to know who the individuals are who were involved in the process. Who were the people who said, `You have to sign. There will be problems in reclaiming the costs by the Commonwealth if you do not'?

Mrs Byrne —Up until 15 May we had no direct contact with the AGS. Our only contact was with our own solicitors--Rennick. The only thing that we had which had come from the AGS was one letter which Geoff McDonald had sent to Sean Millard, and it was a very lawyer-to-lawyer letter. It was brief, it was blunt, and it was to the point. It was couched in lawyer language.

That letter was copied and sent round by Rennick to all their clients. It was made out to be some sort of real threat that the Commonwealth would pursue individuals for costs. In my view, all the pressure came from Rennick. People were ringing the office and speaking to the legal secretary, who said, `You must settle; you don't have any choice.' Michael Glen and Sean Millard were both telling people over the phone, `You must settle; you don't have any choice.'

After 15 May Rennick ceased to act for us. It is intimidating when your lawyer writes to you and says, `Here you are; you are between a rock and a hard place. We are out of here.' We knew we could not get any other law firm involved quickly. I had numerous conversations on behalf of everybody in the early days after the settlement was offered. Firms were saying, `This is a very complex thing. We can't pick this up and run with it today. It would take us weeks to get up to speed.' Yes, it would, because it is a very complex case. So there was no way of getting any outside information.

We were very reliant on Rennick; they were the ones telling us. Rennick went to Tasmania and had a meeting with their incipients in Hobart. That was where the sheriff story came from. That was an example that they used. Although many of us realised that the Commonwealth very rarely pursues individuals for costs in cases like this--it is not a good PR exercise really, is it?--that was not the story that people were getting.

It does not seem to be the story that APQ was getting, either. It would seem that part of the reason that she settled--I have this only at second and third hand--was that she was given the very firm impression, by Rennick and by the barristers who were acting for her, that she would be pursued for costs and that she stood every chance of losing everything that her family owned if she did not settle. In my view, there is no doubt as to where the pressure came from. I think that that would be borne out by most litigants.

Senator LEES —I do not remember sighting that letter that was circulated. Is it part of your submission? It is all right; we will track it down.

Mrs Byrne —No, I do not think it was. I think I had a letter that came from Rennick with it but not that particular letter. I do not for a moment think that that letter was intended for our eyes.

Senator NEAL —Mrs Wilson, you were telling us that your first notification was when you received a letter in the post, and you then had difficulty contacting your doctor. I am interested to know how you came to know what the situation was after that point?

Mrs Wilson —After--

Senator NEAL —After you had contacted your doctor, and he was unwilling to speak to you.

Mrs Wilson —In the letter--which I included in my submission--I was told to ring a sister at the hospital. I rang, and I was told that the sister was on sick leave and to ring back in 10 days. I then rang back in 10 days and was told she had now taken annual leave of another three or four weeks. So it took me six to eight weeks before I got to speak to her, and all she could tell me was: `You can't donate blood, you can't donate organs. Here's the name of a lady who lives in Hobart. Go and talk to her.'

Senator NEAL —And was the lady a doctor or--

Mrs Wilson —No, she was another recipient.

Senator NEAL —I assume you did that?

Mrs Wilson —Yes.

Senator NEAL —Did you ever have someone in the medical profession explain to you what the problem was?

Mrs Wilson —No.

Senator LEES —Has there never been any move on the part of the government to work with you and to go through--particularly in earlier days--what the risks were, once you--

Mrs Wilson —Never in the earlier days.

Mrs Byrne —In the earlier days it was very difficult. Admittedly the health department was in something of a panic. This was a very unusual situation for them to find themselves in. We were basically handed over to the AIDS and communicable diseases section of the health department, which was quite adequate and appropriate in its way because they were used to counselling people about risks to life and they were used to talking to people about transmissible diseases. But it was very ad hoc.

Senator LEES —Could you tell me roughly when that was?

Mrs Byrne —Most of us began to find out in January 1992, so it was pretty ad hoc from--probably--the beginning of 1992 to the end of 1993.

Senator NEAL —How much time was there between when the letter was first sent out saying that there was this problem and when a set-up where you could talk to someone about the risks was organised ?

Mrs Wilson —In 1993.

Mrs Solvyns —It would be 12 months. As I put in my submission, I received a call to ring my doctor, and I was told I had a contaminated batch--a batch that was common with two women who had died. That was all I was told. I knew no more. I said, `What does that mean?' The doctor said, `Maybe nothing. You could get run over by a bus.' And I was left to live with that. That was a second blow--after the first, which was knowing that I had the risk. The second was finding out I had had a contaminated batch. And it took a long time before I even knew what the batch number was or the connection or anything else.

Senator LEES —Do all recipients now know what their batch numbers were?

Mrs Solvyns —Most.

Mrs Brodrick —I found out on Thursday. I have been fighting for two years to find this out.

Senator LEES —I was about to ask what the process was for finding out the rest of the information you need. After the basic information about what CJD is, then you need to find your own personal information. Could you give me some idea about how many recipients have got to the stage where they are comfortable with the information base they now have--batch numbers, for example, and being able to talk to their own doctors and that type of thing?

Mrs Byrne —Some people do not want their batch numbers. Some people absolutely refuse to have them.

Senator LEES —How many recipients would be comfortable with the information base that they now have?

Mrs Brodrick —Probably about half.

Mrs Solvyns —Infertility recipients can obtain their batch numbers, if they were officially approved and they were not back in the early days of the program. For the growth recipients it is a different story. A lot of them cannot get their batch numbers, and that is very frustrating. Or they were treated over such a long time that they had many batch numbers.

Mrs Byrne —In 1994 and 1995 the department got itself quite well organised.When the CJD task force was up and running, life became much more orderly and we had people we could ring. There was a designated doctor who would be there, and you would always speak to the same doctor; it was a bit disconcerting getting a different one every time you rang--and a different story too. So over that period people did have quite good access. There was a 1800 number, and Graham Maynard was there all day every day, and you could always ring up and talk about anything you were worried about. Most people who have made an effort to access information have got it.

Mrs Solvyns —And there was our group. And we have been the main informants for recipients.

Mrs Byrne —Most people prefer to talk to us if they have something that they are really worried about. There are a lot of people who are not very comfortable about ringing the department, so they ring us, and then we ring the department and get the information and go back to them. One way and another we have gathered lots of extraneous and varied pieces of information over the years.

Senator NEAL —I am not clear on the response on the time delay between the original letters being sent out or contact and when a system was put in place to provide information about--

Mrs Byrne —Yes, that was a difficulty, but part of the difficulty was that the department was telling the treating doctors that they should notify their patients and the treating doctors were not doing it. I think we got up to letter No. 5 from the department saying `Wouldn't it be a good idea' before one of them did it. They did it in dribs and drabs, probably from the beginning of 1990 to 1992. The department's position was that they could not notify us; our treating doctors had to notify us.

Mrs Solvyns —Most of us found out from the Sydney Morning Herald, TV shows or the 7.30 Report.

Mrs Brodrick —Mark found out from the Hinch program.

Mrs Solvyns —Most people knew before they actually got the letters from their doctors, which is quite disgraceful. I guess it was probably 12 months from when the majority of people found out until the department put out a HPH News. The first HPH News gave some information and then said on the bottom in small print, `If you want to continue to receive these, ring and we will put you on the mailing list.' Most people did not read that small print and wondered why they never got a second copy of the HPH News. As they made contact with us in the support group they queried why they had never got a second copy of the HPH News.

We finally worked out that it was because of this small print on the bottom that said, `Ring if you want to continue to receive HPH News.' They got an initial letter--most of them had not read that--and did not get anything else.

Senator NEAL —Did that newsletter have any further numbers where you could ring for information about your own case or about the disease generally? It was on that?

Mrs Byrne —One of the difficulties all along has been privacy. The health department has a deep and abiding commitment to privacy which I think gets in the way of practical life. One of the Allars recommendations which has never been acted on is that people should be able to get information directly from the department rather than having to go through a GP.

The way the situation works at the moment is that, as with this family I was speaking to yesterday, if they suspect that their son has been treated they have to wait until this young man comes home because he is over 18, so the department will not tell his parents anything. Then he has to write to the department, tell them who he is and what his date of birth is and give them what other details he has. Then they will have a look a look on the database and see if he is there. He also has to nominate a doctor. The department will then send the information as to whether he was treated to the doctor. There is an on-list and an off-list letter, and that goes to your doctor. You then have to make an appointment to go and see your doctor. Your doctor will tell you what is in the department's letter. Some of us find that incredibly patronising in the circumstances. Some of us would really rather have had the letter ourselves. Some people's doctors just--

Mrs Wilson —Do not tell them what--

Mrs Byrne —Some read the letter, photocopied it and said, `Here, you'd want to have one of these.' They stick one in their files and give you one. But other doctors have papered over the cracks and have not always told people everything. We would prefer a more direct route. This far down the track I do not think there are going to be many people ringing the department and pretending to be a pituitary hormone recipient. There is not a lot of benefit in it. It would be more direct for all concerned if the information could go straight to the person once they have established who they are. You can do an FOI without the information going back through your GP. I do not see why you cannot inquire about your own medical record.

Mrs Solvyns —Some people have actually had to pay for a doctor's appointment to see the doctor to pick up information about themselves. Some people do not have a set GP, so they do not know where to refer this to. We even asked, through the National Advisory Council, for that to be changed. It was agreed to there, but it has not been done.

Senator LEES —There may be people who at the moment do not know. There must be a number of people who do not know. Have we got any idea how many people are on that list?

Mrs Byrne —It would probably be best to ask the department that question tomorrow. About 94 per cent of recipients have been traced. But, as I said, we found one yesterday who had not been traced.

Mrs Brodrick —There are also the IVF people. There are also people who were treated during the IVF program who may not know. They could be out there donating blood and organs.

CHAIR —Would you please speak one at a time? It is difficult for the Hansard people to get it down when you are going backwards and forwards.

Mrs Byrne —You have got us going now!

CHAIR —Yes.

Senator LEES —Looking at the time line, I am having difficulty with the fact that the program finished in 1987-88--

Mrs Byrne —It was 1985.

Senator LEES —There was a problem basically and those who were running the program felt it was better if it then finished.

Mrs Byrne —Those who were running the program would have been quite happy to go on. They were told.

Senator LEES —Yes, but the risks were such that finally that was it. But it was not until 1990 that the first attempts were made to contact people.

Mrs Byrne —People died in America in 1985. With the first deaths they put two and two together and I think there were another three deaths quite soon afterwards and all the programs virtually stopped. In France we all know they went on and in some of the Scandinavian countries they went on, but in Australia the program was stopped, against the wishes of HPAC, but they finally considered that they had to stop.

Senator NEAL —You have said a few times that it was not the people who were running the program who actually made the decision to end it. Can you clarify exactly why you believe the program was stopped and who made the decision?

Mrs Byrne —I think they acceded to the necessity of stopping, but they did not stop collecting pituitary glands. They kept right on doing that until 1988 in the hope that they would be able to start using the program again, that the risk would go away. Nobody had died in Australia, so they were quite willing to get up and running again. It was only in 1988 that they finally realised that, no, the risk was too great.

Senator NEAL —But who actually made the decision to stop the program in 1985? Did the people running it say, `We will put it on hold for a while,' or was there some decision made by the department or some external organisation?

Mrs Byrne —I think from my reading it would have been a combination of CSL, who were extremely worried in 1985 about their legal position, and the Commonwealth, and the doctors who were in HPAC, because, while I say they were unwilling to stop, they did in fact stop using the treatment. But they did not tell anybody why.

CHAIR —Senator Neal, for your own information, in one of the submissions there is a long chronology of events. In the mid-1980s there was a review of the practice in Australia, following the deaths overseas, by a number of committees. It is dated in one submission.

Senator NEAL —It is not so much the dates, I was just very interested in that view expressed that there was some unwillingness to end the program.

Mrs Byrne —I have been fascinated by the fact that they actually kept on collecting pituitaries for three years afterwards. They obviously had every intention, if they could, to keep on going. They were not sufficiently impressed by the risk.

Mrs Brodrick —It took up to eight years for some people to be notified that they were at risk after they stopped the program.

Mrs Byrne —The beginning of the question was why there was the gap between the program stopping and them notifying people. It was only because Jane Allender died in 1988 and Jenny Halford died in 1990, and pressure was mounting because there were now two families who knew that there was a connection. They only found out about the connection between the fertility program and their wives' deaths after those women had died, which was why they never had pain and suffering compensation. But the connections were being made and the pressure was mounting on the department to make it public, because obviously people knew that CJD was a transmissible disease. Everybody knew there were 2,000 people out there who were also at risk of CJD. Something needed to be done to protect public health and just to find out how many other people had died.

Senator HARRADINE —In your submission, and Mrs Brodrick mentioned it as well, there was mention of quite a number of unofficial recipients of hormones, some 200 I think you mentioned--

Mrs Byrne —It was only a guess. I have got no idea and the department have not told me yet.

Senator HARRADINE —How many of those have been in touch with the support group?

Mrs Byrne —Part of the problem is that we do not really know with any certainty, because until the last few weeks we were not aware that anybody was making a distinction between people who were treated officially and people who were treated unofficially. Again it is in the submission that the database at the department was actually changed to accommodate these unofficial people. If people could basically prove that they had been treated, they were being accepted and put on the mailing list and we were putting them on our mailing lists. There was really no distinction being drawn at all.

We knew that for a few people the department said they had no records of their having been treated. But I guess by the time you get up to--and I am guessing--a couple of hundred unofficial recipients, it becomes less of an issue with the department, they are not made such a fuss of and, yes, they are just added to the mailing list. We know that they responded to the survey, because when some people who responded to the recipient survey got back their entries on the database it actually said, `Off-program recipient.' So they were being counted as recipients, but no distinctions were being made.

It seems that both firms of solicitors that had writs going had been informed that the Commonwealth did intend to make some difference when it came to the settlement. But, as I say, we became aware of this only very recently and there does not seem to be very many unofficial recipients who are actually involved in the litigation. We are waiting to have the department clarify exactly how they stand before we really make an issue of it with recipients, because basically if the department is going to say, `Okay, we'll treat everybody equally,' then there is no point in getting a couple of hundred people very upset. So we are just waiting for the department to give us some sort of clear answer before we go back to recipients.

Senator HARRADINE —Thank you, Mrs Byrne. Mrs Solvyns, you mentioned in your submission a moment ago that more than half of the recipients are not litigants?

Mrs Solvyns —Out of 2,000-odd treated about probably 150 were litigating. The rest of the recipients were not litigants.

Senator HARRADINE —In your case you were not a litigant?

Mrs Solvyns —That is right.

Senator HARRADINE —I ask this simply for information: could you tell us why?

Mrs Solvyns —Because I felt that, although learning of the risk of CJD and particularly learning about the connections with the batches has had a huge impact on my life, I have dealt with the emotions of it myself with my family and I just did not think I could prove psychiatric injury. I have not had any counselling.

Senator HARRADINE —Thank you. I apologise for asking that.

Mrs Byrne —A lot of people had that point of view. A lot of people do not believe in medical litigation. They just do not believe that Australia ought to go down that track and they will not take part for that reason. Some of us can take the psychiatric injury part quite as seriously as Susan. I do not think I could prove it either. But we were there to make the Commonwealth realise that we were serious, that we were not going to go away, that we were prepared to play hard ball to get the issues aired. But, yes, there are only 150 out of 2,000. So it is a long way from being everybody.

Senator HARRADINE —And of course a number of people would have thought that it would be the better to get peace of mind if you were not in an endless type of legal situation. Really what you are asking us is to make sure that we do take into account those recipients who were non-litigants.

Mrs Solvyns —Yes, because it has had as much impact on their lives.

Mrs Byrne —I have realised since the settlement and since all this has been going on that there are many people who just are not in the position to plead psychiatric injury. As it says in the submission, I was really stunned and surprised by the number of people who said to me, `I could not possibly go to a psychiatrist and get a piece of paper that said that I was psychiatrically injured because my ex-spouse would be around for the kids.' I find that horrifying, but it was a reaction that I had from quite a number of people and that is a very significant reason for not alleging psychiatric injury.

Senator LEES —Were people also concerned about their work prospects if they took that course?

Mrs Byrne —Yes, some people are in jobs where having a piece of paper that says you are psychiatrically injured would not be a good career move.

Senator FORSHAW —It would not necessarily guarantee success in any event, would it? In other words, it can be seen as taking a fatal step, if you like, to seek that declaration, statement or whatever and to put it up in lights that you acknowledge that you have a psychiatric injury and then it does not necessarily end up achieving some compensation anyway and yet it is a thing that you cannot withdraw later.

Mrs Byrne —You can always get another piece of paper that says you are sane now, but we all know how you get those.

Senator FORSHAW —Try giving that to some employers!

CHAIR —Mrs Byrne, in your opening comments you made a number of references to both compensation and accountability--I took down different notes about that at different times. I take it that your prime consideration throughout this inquiry is to have those who were responsible for inflicting misfortune on you and others brought to account, or is it more appropriate to say, on behalf of your members, that you are more concerned with the issue of compensation? I am unclear as to what you are seeking from the inquiry.

Mrs Byrne —So am I, Senator! I think it is both. It is impossible to get people to make that sort of a choice. I think that, if the majority of us had to make a choice, we would go for accountability over compensation, but there are people who very strongly believe that there is some compensation due. There certainly are people who have that psychiatric injury and who do not have a lot of choice about whether they accept it or not. Certainly they are due compensation. It is a question that I have been putting to people, and the answer is far from clear. Most people want both.

Senator HARRADINE —Looking at the question of informed consent, you would suggest that was a complete fiction, generally speaking, for recipients of the HPG treatment. Is that the case?

Mrs Byrne —I think our lawyers concluded that consent was probably better from growth hormone recipients than it was from fertility hormone recipients. Certainly in terms of wide-ranging information there was none. We were not given anything in writing. We were given very scanty information about what it was that we were being treated with. Very little was ever volunteered.

If you asked, sometimes you were told the truth, but I suspect that in some cases the treating doctors did not actually know where this was coming from and they certainly should have. But we did not know. No fertility recipient that I am aware of knew that what she was being injected with came from cadavers. I had been told that it came from human bodies but, being young, naive and fairly obsessed with having a baby, I did not think about whether they were alive or dead, let alone whether anybody had permission to take them. So I would agree with you that consent was much less than informed in the majority of cases.

Senator NEAL —Were you ever aware of any discussion of the risk of disease being passed on?

Mrs Byrne —Oh no, there was no risk! That was my question when I was told that it came from human bodies. I was inquiring about the risk.

Mrs Wilson —It was totally natural!

Mrs Byrne —I was told it was totally natural--`It comes from human bodies.'

Mrs Wilson —Menopausal mums!

Senator FORSHAW —My question relates to the situation overseas. Obviously you are very critical of CSL, government, the authorities and whomever and we understand that clearly. Have there been any instances of countries or authorities overseas that have taken a more responsive, sympathetic attitude to the sorts of claims that you are now making? I should stress that by that I would not want to suggest that we should do whatever the US or Scandinavia or anyone else would do. Rather, I assume that some of the same issues have arisen and I am interested in knowing whether or not there has been a different attitude adopted in the case, for instance, of paying compensation or officially recognising accountability in similar situations.

Mrs Brodrick —In France they have actually gaoled two doctors on charges of manslaughter and another pathologist who was in charge of their program is in gaol for poisoning, which is a fairly serious crime in France. According to my reading, they have settled #200,000 in English money on their victims in France.

Senator FORSHAW —Has that been on the basis of a general recognition of recipients--

Mrs Brodrick —Of course, they did have a higher death rate too.

Senator FORSHAW —Yes.

CHAIR —That was for deaths.

Senator FORSHAW —For deaths, was it?

Mrs Brodrick —No, the settlement is on offer. But they had a higher death rate in that country.

Mrs Byrne —To be fair, the French do have a particular situation because, when everybody else stopped, they did not. They thought they had a solution to the problem and they manifestly did not. They have killed more people with growth hormone than any other country has.

Senator LEES —My question follows on from that and you may want to take it on notice: has the Australian group talked together about what they think would be a reasonable level of compensation, across-the-board compensation, considering the impact on the individuals as well as on families?

Mrs Byrne —No, I could not say that we at this point have a formal response to that. The numbers vary. You will get a different answer--

Senator LEES —I realise that in the ways in which it has affected different families. But just looking at a basic settlement both in recognition of the mistake and in recognition--just going through the Allars report--of the lack of support. I am just trying to draw out a bit of the timeline today and the gaps that are there between when knowledge was held by some people and when that knowledge was passed on to others, and in particular to those people that were affected. So acknowledgment of process mistakes as well as the damage to families. Perhaps you might like to do that for us. We have a couple of weeks before we have to actually report.

Mrs Byrne —We had a go last night after dinner but we did not get very far.

Senator LEES —I will leave it with you.

Mrs Byrne —Yes, okay, we would be delighted.

Senator FORSHAW —I do not think it is put on the basis, Senator Lees, that it is like your last chance or anything.

Senator LEES —No, particularly considering what France has done and what a couple of other countries might be looking at.

Mrs Byrne —It is an interesting question exactly what people would consider an acceptable number and what people might consider yet another insult.

Senator LIGHTFOOT —I have a question for Mrs Byrne. You mentioned many things in your submission and in later evidence you gave to the committee you mentioned deaths in the United States from 1985. Do you have any coronial reports on those deaths as to whether they were attributed to CJD; and, if that was the case, was that CJD contracted by the deceased from HGH?

Mrs Byrne —There were certainly autopsies and, yes, the connection was actually made quite quickly. As I was saying before, the knowledge that CJD could be transmitted from one human being to another by various processes was around in the literature from 1977. So when one of the young men who been treated with growth hormone in America came down with CJD, his treating health professionals became highly suspicious because CJD is usually a disease of the over-60s. It is most unusual to get it in your 20s.

Senator LIGHTFOOT —But not unheard of, I take it?

Mrs Byrne —Not unheard of but very unusual. This is prior to BSE and new variant and all those other sorts of things. In those days it was very unusual. Two and two was put together quite quickly and, as I was saying, there were other deaths quite soon after that there and in Europe. It became manifestly obvious that this was what was happening.

Senator LIGHTFOOT —So your evidence from what you have read and from what you have been informed is that the deaths in the United States link CJD to HGH.

Mrs Byrne —I do not think there would be any doubt about that. I think we are now up to 100 cases worldwide where CJD has been linked back to either growth hormone or fertility hormone.

Senator LIGHTFOOT —In the early days, and I must admit that I am about as new as you can get to this committee--this is my first meeting.

Mrs Byrne —I thought you must have been new. You have not been in the Senate for too long, have you.

Senator LIGHTFOOT —You have to forgive me if some of my questions appear to be pedantic--they are very sincere. I wonder whether you could inform the committee as to the explanation of risk that was given by those administering HGH at any time over that period up to 1988? Was there an explanation by the surgeons, the doctors or the experts with respect to that?

Mrs Byrne —Do you mean in terms of CJD?

Senator LIGHTFOOT —Yes.

Mrs Byrne —Absolutely none.

Senator LIGHTFOOT —In terms of anything--not necessarily CJD but any adverse effect or any negative effect?

Mrs Byrne —We were warned to a greater or lesser degree about the risk of hyperstimulation of the ovaries. Some people had fairly blunt and forthright warnings about that. Other people had none at all. That happened reasonably frequently and sometimes with fairly catastrophic gynaecological effects. I think most of us were warned about the risk of multiple births, but certainly in the place that I was treated you had to agree that if you did become pregnant with more than three that you would have to have an abortion. That took care of the multiple birth risk. There were not very many risks that we were told about. I think they are basically the only two. With the growth hormone, I cannot recall that there were any specific risks that were generally mentioned to people.

Senator LIGHTFOOT —But there may have been?

Mrs Byrne —There may have been, but I cannot recall them at the moment. You are going to hear from some growth hormone recipients later in the day. Perhaps you could ask them that.

Senator LIGHTFOOT —I have gone through some of the submissions but I have been unable to find--I have not exhaustively examined all the submission because they are very extensive and comprehensive--whether there was any cost to the treatment?

Mrs Byrne —Not to most people. This was another one of the ironies of the whole thing. It was presented to us as this magnificent gift that the Commonwealth was giving to you and you were told how terribly expensive this treatment was and how lucky you were to be getting it for nothing. There are some reports of growth hormone people having to pay for it.

Senator FORSHAW —It was put on the PBS list at one stage, was it not?

Mrs Byrne —In a fairly unusual way. It does not really appear to have fitted the criteria dreadfully well.

Senator FORSHAW —Professor Allars actually found that.

Mrs Byrne —Allars had some severe concerns about S100 listing.

Senator LIGHTFOOT —I have a question for Mrs Solvyns. You mentioned in your submission that some of the patients with HGH were treated with--and I think I can quote you correctly--`leftover product'?

Mrs Solvyns —That is right.

Senator LIGHTFOOT —What did you mean by that?

Mrs Solvyns —What happened was when Mrs Smith got pregnant and there was some product left which had been approved for her to be treated with doctors were taking it back to their rooms and using it to induce mucus and different types of things and treating people in their rooms. One of the Sydney doctors did actually supply the health department with the names of, I think, 11 women who he had treated unofficially in his rooms and notified them of their risks and put them in touch with my support group. It is people who know that they have been treated and the doctor has actually advised the health department about and yet are unofficial who I am concerned about. They are at the same risk. I am also concerned whether or not their names are on the blood bank lists. It only takes one injection to be at risk.

Senator LIGHTFOOT —It is almost a double jeopardy?

Mrs Solvyns —Yes. So that is apparently what was happening. Some doctors have come clean and told the department, others haven't. This is why there are bound to be a lot of unofficial people out there that doctors have treated like this. The doctors are keeping quiet and these people do not know and will never know of their risk.

Senator LIGHTFOOT —Mrs Brodrick, you mentioned bullying tactics. Could you expand upon that?

Mrs Brodrick —I think the bullying tactics came from the repeated letters from the solicitors, insisting that this was our only option, that we had to pay up.

Senator LIGHTFOOT —These bullying tactics were limited to letters, were they?

Mrs Brodrick —I tried to contact their office. I never spoke to them directly. I could only ever get the secretary.

Senator LIGHTFOOT —My last question--thank you for your indulgence, Mr Chairman--is to Mrs Wilson. I am intrigued as to why your doctor should have hung up--I think one of my other colleagues mentioned this--after 25 years?

Mrs Wilson —I had done some TV programs.

Senator LIGHTFOOT —On the subject?

Mrs Wilson —Yes. I was trying to get people information, to make people aware of what was happening and to get people together. Whether he saw that as a threat, I don't know.

Senator LIGHTFOOT —Did you subsequently speak to him?

Mrs Wilson —No.

Senator LIGHTFOOT —You have never spoken to him at any length?

Mrs Wilson —No.

Senator LIGHTFOOT —Did you try other phone calls to him?

Mrs Wilson —Yes.

Senator LIGHTFOOT —He refused to take your phone calls?

Mrs Wilson —Yes.

Senator LIGHTFOOT —You were able to get to him directly?

Mrs Wilson —I was able to get to him directly, but as soon as I said, `Hi, Prof, it's Carol Wilson,' he would just hang up.

Senator LIGHTFOOT —He never had any contact with you by letter?

Mrs Wilson —No, the only letter I got, signed by him, was at the end of May 1992.

Senator LIGHTFOOT —No other indirect means?

Mrs Wilson —No.

Senator LIGHTFOOT —You have never had any second-hand evidence by way of a third person from the professor?

Mrs Wilson —No.

Senator LIGHTFOOT —That is rather extraordinary. How many times did you see the professor prior to that, prior to your telephone calls?

Mrs Wilson —As I said, I had not seen him for about 24, 25 years.

Senator LIGHTFOOT —In the period of time prior to that 24 to 25 years, how many times had you seen him?

Mrs Wilson —Probably once a week for about two years--probably more.

Senator LIGHTFOOT —So you got to know him quite well?

Mrs Wilson —Yes.

Senator LIGHTFOOT —What was your opinion of him at that time? Was he a decent sort of a caring person?

Mrs Wilson —Yes.

Senator LIGHTFOOT —Would you describe him as that, without me putting words into your mouth?

Mrs Wilson —Yes, he was.

Senator LIGHTFOOT —Did you have utmost faith in him?

Mrs Wilson —Yes, I did.

Senator LIGHTFOOT —You had confidence in him?

Mrs Wilson —Yes.

Senator LIGHTFOOT —You never questioned what he did?

Mrs Wilson —No.

Senator LIGHTFOOT —Then why do you think he would not have wanted to have seen you when you had that relatively close relationship?

Mrs Wilson —I don't know, and that has happened to quite a few other recipients as well.

Senator LIGHTFOOT —What would you guess if you had to guess?

Mrs Byrne —I think a lot of the treating doctors were genuinely shocked and horrified at what they may have just found themselves up to their necks in. It was not an unusual experience for people to find that their doctors were no longer available, that they could not get through on the phone. A significant number of gynaecologists and obstetricians actually decided to take jobs overseas. I think you will hear from some people later today whose treating doctors found that the opportunities overseas were beckoning just about the time that all this happened. To give them their due, it must have been pretty horrific for them. It would not be nice to think that you might be looking at having to tell this to a whole lot of women that you had treated and made pregnant. A lot of these guys did really enjoy that making families aspect of it; they do like babies and bringing them into the world. It would not be very nice to have to think that you might have to cope with a lot of your patients dying from a disease like CJD. It would be very unpleasant indeed. A lot of them took the easy way out.

Senator LIGHTFOOT —Ms Byrne, I am sure the Chairman is going to indulge me one more question that you have precipitated. With respect to other countries that we sometimes compare ourselves with--the United States, Canada, France, and particularly the United Kingdom--what is their position with respect to funding, through legal aid or other means, recipients of the HGH who now find themselves in this predicament?

Mrs Byrne —The only place I can speak about with any confidence is England. They have started from a different end, I suppose, because they had so many deaths. The case there was brought by the families of growth hormone recipients who had died. They have not yet got to the point of the worried well--which is what they call people like us--but I would have to say that it does not look all that likely that the English courts are going to be terribly accommodating to the worried well.

Senator LIGHTFOOT —So there is no class action in any of these countries that you are aware of?

Mrs Byrne —No, which is amazing, because I think everybody is expecting America to lead the way with some sort of class action. They have had quite a number of deaths and they certainly have a lot of recipients, but for some reason it does not seem to be happening, which is odd.

To give the Commonwealth its due, it certainly has done a lot of good things in terms of providing counselling services--which have had to be revised significantly, but are now quite good--funding support groups and services generally.

CHAIR —Thank you ladies for all of your comments this morning and the help you have offered to the committee. I will ask you now to vacate the chairs, and Mrs Gina Stachlewski and Mr John Stachlewski can come to the table.

[11.00 a.m.]