Selected Transcripts of the Archer Independent Inquiry
Thursday, 24th May 2007
EVIDENCE OF ANDREW EVANS
LORD ARCHER OF SANDWELL: Would you prefer to read your statement or would it be easier if I ask a question?
ANDREW EVANS: I can certainly read my statement and then --
LORD ARCHER OF SANDWELL: All right and you don't mind occasionally if I offer a little guidance.
ANDREW EVANS: I'd like to thank the inquiry panel for inviting me to give evidence today. By now you'll have heard from various members of the community that have been affected by contaminated blood and blood products and will have some idea of the many ways in which the disaster has affected lives, including the differences in what it means to have been infected across different age groups and generations. It is with this in mind that I submit the following to you as one of the younger people to have been infected by this disaster. My background -- that pertinent into this inquiry, is that I have severe haemophilia A, producing less than one per cent Factor VIII. I was infected with HIV through Factor VIII produced by Armour Pharmaceuticals at age 5, which would have been in or around 1982, and at a date unknown but probably around the same time with hepatitis C. I have also been exposed to hepatitis B and have been told I have been given factor concentrate that was created from a pool of donors one or more of which later went on to contract new variant CJD. Therefore these conditions are something that have always been with me. I've not had the benefit of knowing what it's like not to be HIV positive or not to have hepatitis. From 30 years old, as I sit here today and I've lived 25 years with these viruses, or to put it another way, more than 80 per cent of my life. I'm currently secretary to the campaign group Tainted Blood, of which you may have heard and which are campaigning on the issues you are addressing here. I have been asked to come here today from a personal perspective which would have made you aware of this fact.
LORD ARCHER OF SANDWELL: We have actually been provided with a copy of the last application.
ANDREW EVANS: You have. I believe they are also speaking on June 4 here, so I will leave them to continue with that. Back to my personal story. My parents were told of my HIV status when I was age 10 in 1987 by my consultant, at Birmingham Children's Hospital and this information was kept from me for a further three years, when my mother told me of my HIV positive status. This was primarily due to the fact that I had begun to display symptoms of immune deficiency including being unable to shake off colds and coughs and spiking high fevers on a regular basis. I was placed on a dangerously high dose regime of AZT, common in the earliest days of AZT, which killed many people back then and which caused my immune system to crash further and I was declared AIDs diagnosed at the age of 15. From that time, for around four years, I spent most of my time in hospital fighting for life. On several occasions during that time period my parents were warned they should probably say goodbye to me as I was probably unlikely to survive the night. My CD4 count dropped to below detectable level and my viral load rocketed. I was being tube fed constantly. I developed candida in my mouth and throat and developed PCP pneumonia. The steroid treatment for this caused a condition called a vascula necrosis of the femoral heads and I've had one hip replacement already and I am due to have my second later this year. My weight dropped to seven stone and at 6'1'' this is quite critically low. And needless to say combination therapy was not available at that time and most people believed I would not survive.
The medical staff caring for me thought it a miracle that I'd survive for over four years under such conditions. I feel it's important to point out that within the framework of history of HIV and hepatitis C, haemophiliacs and those exposed to blood and blood products were some of the first ever to be exposed to the viruses. As you know, with new diseases usually comes a substantial delay before effective treatments become available and in the case of a virus such as HIV, the longer the exposure, the greater the robberies of disease progression. We, in effect, were infected with viruses associated with absolutely no treatment for 10 years and no effective treatment for more than 15 years. Additionally, treatment resistance and exposure to early HIV medications combined to mean that more people in that situation are multi-drug resistant than the general populous of infectees.
These facts, I believe, explain some of the more than 1,700 deaths and the very fragile state of health of those remaining within our community. Personally and for those others that were infected at a similar age to me, add to this the permanent effect of the viruses that they have had on a growing child as the body is still forming and you can see that, you know, it's quite a devastating thing. I saw many of my friends, also haemophiliacs, die from HIV contamination and some from hepatitis C infection. This was still while I was still in the children's hospital as a child. I've seen people bleed from their heamophilia until they were in agony rather than treat themselves with potentially contaminated blood. When I was three or four years old my father read of the potential for contamination of blood products with a new deadly virus called HTLV-III, later known as HIV, and told me specifically to try to not hurt myself so we wouldn't have to use any more Factor VIII than absolutely necessary. Both parents attendeda conference with the --
LORD ARCHER OF SANDWELL: Yes, can we come on to the next paragraph?
ANDREW EVANS: Certainly, yes.
LORD ARCHER OF SANDWELL: If you have been told what the choices were, how would you have chosen?
ANDREW EVANS: Well, being a young age I'd have to have let my parents choose.
LORD ARCHER OF SANDWELL: Yes, I follow that.
ANDREW EVANS: Had we been in full knowledge of the facts with regard to contamination of blood I believe my parents would have requested that I continued on Cryoprecipitate which I'd been using formerly. Where are we now? That cuts out much of the next paragraph.
LORD ARCHER OF SANDWELL: Can we begin "Because of this I've had my life destroyed"?
ANDREW EVANS: Because of this I've had my life destroyed, as have my family. My sister who is almost four years younger than me virtually had to bring herself up because my parents had to concentrate on me during my severe illness. This has badly affected her and probably will for the rest of her life. My health -- even on combination therapy, which carries some horrible side effects with it, akin to taking low-dose chemotherapy for the rest of your life -- is precarious at best and my body has been wrecked because of prolonged illness and exposure to medications. And I am one of the luckier ones because I survived. So many others did not and their families have their lives devastated also.
LORD ARCHER OF SANDWELL: Can you tell us a little about how you learned you had hepatitis C? Were you ever actually told straight out you had it?
ANDREW EVANS: No, what happened was --
LORD ARCHER OF SANDWELL: There was a passing comment rather, by the doctor who was treating you at that time.
ANDREW EVANS: That is correct. I was attending a clinical appointment and I was due to have my regular HIV blood screenings and my physician said to me --
LORD ARCHER OF SANDWELL: Well -- sorry.
ANDREW EVANS: I won't mention it here. My physician said to me, we should really think about getting your hepatitis C genotypes to see if you'd be a candidate for treatment.
LORD ARCHER OF SANDWELL: And that was the first time you --
ANDREW EVANS: That's the first time I learned that I had hepatitis C. And that was probably six or seven years ago, something like that.
LORD ARCHER OF SANDWELL: Yes.
ANDREW EVANS: And incidentally the genotype I have is genotype 1A which is the most difficult to treat, and if I were to go on to treatment, at the moment, I would actually need to change my HIV combination therapy which I've been on for a good six or seven years as well now. And I'm quite stable on, so it would probably have great implications.
LORD ARCHER OF SANDWELL: Because the two would react?
ANDREW EVANS: That is right, yes. So in fact treating the hepatitis C would cause the HIV to recur and not doing so obviously has the inverse effect. "Between the devil and the deep blue sea", I think the phrase is. I know that the inquiry is addressing the issue of financial compensation as part of its remit. For my purposes, to my mind, the proper answers as to how and why this disaster was allowed to happen would come first from any outcome from this is inquiry but the issue of quality of life is also very important for many. For those people infected at my age, Macfarlane Trust's special payments made around 1990, 1991, were possibly even less significant or compensatory than older people at that time. My reasons for this are twofold: because of our ages at the time, 13 or 14 at the most, and projected lifespan potentially three to four years, investing the money was not an option. As with everyone else we were advised to enjoy the money while we could but even had we decided not to, a 13-year old would rarely choose to invest wisely. The second Macfarlane special payments trust payment was scaled according to circumstances, the lowest payment of £20,500 being paid to people who A minus in 1991 with no dependent and those in my age group fit into this category. Those people with married with children received more than £60,000 as their payment which whilst still insignificant considering the catastrophe.
LORD ARCHER OF SANDWELL: But substantially more than you --
ANDREW EVANS: Exactly and would have enabled them to make something a little more of their lives at that time, I would imagine. I am pleased to say I actually got married last week.
LORD ARCHER OF SANDWELL: Congratulations.
ANDREW EVANS: Thank you. And my wife has a three-year-old daughter so I am now in the same situation as those people that would have had that payment back then and yet there is no regress of the MSPT discrepancy. That's pretty much all I have to say to you. I did write down a couple of other things with regard to violation of Human Rights when you have a virus such as HIV, so I'd just like to touch on those if I may.
In particular, I've had problems getting into other countries because of immigration rules because of my HIV status, and in particular America. And I know Australia employ the same rules. They actually require you to prove that you are not an outstanding risk to the US population, and get a waiver for a Visa in order to actually go into United States, whereas other citizens can just go in on a Visa waiver for three months anyway.
Assisted Conception
Should my wife and I want to try for a child now it's not as simple as just trying for a child. You know, we would have to go down the assisted conception route, sperm washing and such other medical indignities, that really I don't believe we should have to go through. Of course, there is the issue of life insurance and property buying. So just to have an HIV diagnosis and, I would imagine, hepatitis C plays a part in this as well for those who don't have HIV, the infringement upon Human Rights and the ability to actually get on with their normal life is quite dramatic, so I just wanted to point that out to the panel.
LORD ARCHER OF SANDWELL: Thank you very much. Just one further thing. I think you're secretary of the Tainted Blood --
ANDREW EVANS: That is right, yes.
MS WILLETT: You have been HIV positive since the age of five, did you say?
ANDREW EVANS: That is right.
MS WILLETT: But your parents were told about that at the age of ten?
ANDREW EVANS: Yes.
MS WILLETT: When did the medical people actually know?
ANDREW EVANS: They would have tested me probably at the latest at around 1983, end of 1983. When the tests became available they would have run the tests at that time and I believe it says in my notes that I was given a positive diagnosis at that time.
LORD ARCHER OF SANDWELL: How old would have been then?
ANDREW EVANS: I would have been six years old then.
MS WILLETT: So in terms of, you know, the consequences and potential impacts of that diagnosis, how was that, if you like, communicated or dealt with in any sort of -- you know, what was the support structure like?
ANDREW EVANS: There wasn't any. It was dealt with on a purely medical basis. There was no counseling offered. Obviously I didn't find out until a good five years after I was infected but from what my parents have told me and you have to remember that I am really remembering a lot of this through them, through my mother, really, because my father is no longer with us, but there was no counselling and support offered for relatives of children at that time, and then my parents at the time when they told me, being left to, in effect, counsel me without having dealt with the issue first themselves.
MS WILLETT: What sort of advice were they given in terms of the precautions they should take or any kind of special care you may have required?
ANDREW EVANS: Because HIV was very little understood back in sort of the early eighties or even the late eighties, they were told obviously, you know, you must keep your child away from other children when he has open wounds, you know. I don't think there was the sort of dramatic over-melodramatic requirement to keep me away from other children per se and stop me from using the same cutlery and that sort of thing but we were told that should bleeding occur then I would definitely need to be, in effect, sort of quarantined until --
MS WILLETT: I see.
LORD ARCHER OF SANDWELL: Thank you very much.