pnadel/npi_all_transcripts · Datasets at Hugging Face

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700	7	QUESTION: In 2000, so five years after the hepatitis C diagnosis, you went on a treatment strike, because you wanted to be on recombinant. Again, we will just l ook at a letter to help put this in context. It is 1387005, please, Henry. It is dated 19th May 2000. It is a letter from you to Dr Wilde and it says thi s: "As you are aware, recently I sent a batch of Factor VIII back to the unit as I was not happy wit h its appearance. I read the letter from Grifols, th e manufacturer, but I am afraid I was not convinced. "In their opinion it may be within the colour ranges allowed, but there seems to have been no specific testing of this batch other than when it w as packed for distribution. "I know that you as a doctor cannot comment and 1 I am also aware that you cannot guarantee to me whe re the blood plasma contained in this product is from, only where it is manufactured." Then you say this: "Well, over the past few months I have had less and less faith in these products, and I feel that a t the moment I would rather risk severe bleeds than treat myself with something that I cannot wholly trust, especially considering the fact that I have already had my health severely compromised with two blood-borne infections. "I am sorry to be a difficulty to you as a patient, but I feel I must write to you and let y ou know of my feelings on this subject. The problem i s only made worse for the fact that there is a synthe tic product that is available to haemophiliacs which co uld reduce the fear and risks of other infections drastically. "You know I have the greatest respect for yourself as my doctor, but I feel whilst I am still prescrib ed human-based Factor VIII, I would rather accept the problems with bleeds as a physical one rather than the anguish of injecting these products with the worry that it has now become." What can you recall about that?2 ANSWER: That was a difficult time. I had a good friend of mine from up north you had gone on a treatment stri ke and he was quite ill. He shouldn't really have don e it, but he did. And I felt very strongly about thi s, because there were certain other viruses that had already been identified, Parvovirus being one. Our immune systems had already been damaged. To expose them to any other virus was just ridiculous. You know, how can anybody do that? So a few of us stop ped taking Factor VIII, and that was it, basically.
701	7	QUESTION: You I think wrote to and got support from Mark Wint er. ANSWER: Yes.
702	7	QUESTION: If you can explain who that was. ANSWER: Dr Mark Winter was -- I don't know where he was a haematologist. I think it was down south somewhe re. But he was a MacFarlane Trust trustee as well. I asked him a statement: "Would you agree with the fact that Parvovirus can and is found in human-deri ved Factor VIII?" He said yes. He also sent a support ing letter that I had to send to the Worcester Health Authority at the time, because it came down to finances, and it didn't matter -- this is the frightening thing -- it didn't matter how efficacio us Factor VIII was, the recombinant, compared to human-derived; it came down to cost and that was it . 3 Mark Winter actually put in his letter that I think it lasted slightly longer -- the recombinan t lasted slightly longer than human-derived anyway, s o you would have to buy less. As soon as they saw th at, we had recombinant.
703	7	QUESTION: That was middle of 2000, we have seen, when you wer e writing, expressing your concern -- ANSWER: Yes.
704	7	QUESTION: -- about what else might be in the products you wer e injecting yourself with. ANSWER: Yes, but I wasn't the only one, so ...
705	7	QUESTION: But it was the very next year, 2001 -- ANSWER: Yes.
706	7	QUESTION: -- when you received letters saying you might have been exposed to variant CJD. ANSWER: Yes, so somewhat proved a point.
707	7	QUESTION: What was the effect on you of being told of the ris k that you had been exposed to vCJD? ANSWER: It was extremely concerning, actually. The hepatit is C had not given me any worries. I had had HIV rela ted illnesses, quite bad ones. [Redacted] and I had -- our marriage had broken up by then, and I had to ta ke on board that this CJD, which was similar to the wa y it was being treated as AIDS was in the 1980s. The re was a lot of shock, horror media stories and you 4 weren't alive very long. Let's put it that way. But again, prioritise it, you know. I hadn't known anybody that had died of it that I know of, s o ...
708	7	QUESTION: If we go back then to the second half of the 1980s, when you had been given the diagnosis of HIV, you were about 21 years old at the time. You were newly married. ANSWER: Yes.
709	7	QUESTION: And you say in your statement that that diagnosis destroyed yours and your wife's lives and changed t he course of those lives forever. ANSWER: Yes, yes. I think I have said to you there were th ree people in the marriage, three individuals in the marriage, and one of them was this big virus. And it did, it just ripped us apart. [Redacted] was 18 wh en we got married. We wanted to buy a house, settle down, you know, do the things that normal people do , and not 12 months after, it was ripped apart, completely ripped apart.
710	7	QUESTION: Can I ask you first about the physical health impac t of infection and treatment. What had been the predominant physical effects of the HIV infection? ANSWER: From -- initially, not much. A lot of mental angui sh, but initially not much physical. I had a lot of so rt 5 of little opportune infections that were all put do wn to being related to HIV. It wasn't until 1999 that I had to go and see Dr Wilde because I had fell seriously ill. That's when we had the conversation about antiretrovirals, et cetera, so ...
711	7	QUESTION: Just before we get to that, you had declined treatm ent with AZT. ANSWER: Yes, I had.
712	7	QUESTION: Why was that? ANSWER: Because some of the haemophiliacs I had seen, to me they just looked worse than the ones that weren't o n AZT. I asked -- I am pretty sure it was Frank Hill -- I asked about AZT, what it was. I was told, "There is no need for you to know, you just take it". That's the sort of attitude, which is why I stopped going. But I am glad I didn't take AZT. That's my persona l choice, and I still think, you know, in some cases it should never have been given, but ...
713	7	QUESTION: As you were just saying, it was around the late 1990s -- ANSWER: Yes.
714	7	QUESTION: -- that Dr Wilde said to you, "Get treatment now or you will be dead within three months". ANSWER: Yes. I went to see him. I was very weak at the ti me. I had oesophageal candida, which is a typical 6 HIV-related illness. He did some bloods on me. We had a chat. I always asked him to be straight with me. He said, "Look, you have never taken antiretrovirals. In my opinion, you have got about three months to live. So go home. Don't take too long to think about it, but have a think what you w ant to do". So I had to go home and have a think about it, so ...
715	7	QUESTION: You have described in your statement you were still unsure whether you wanted to start the medication o r just let nature take its course. ANSWER: Yes.
716	7	QUESTION: But you had a home visit from one of the haemophili a nurses, Sam. ANSWER: Yes, Sam, yes, yes. She was a rod to many of us. She basically convinced me to give it a go. I think sh e said something like, "You can die later if you real ly want to". It's very flippant, but that's the sort of relationship we had with her, so ...
717	7	QUESTION: You did start the antiretrovirals, but the first se t of drugs that you had caused significant problems. ANSWER: Yes.
718	7	QUESTION: What were those? ANSWER: I believe it was Nevirapine. I had -- I was burnin g up, but I had massive rashes on the inside of my 7 thighs, and I actually -- once I had started it, I thought, "Right, well, I am going to carry on". Sam came round and asked me how I was getting on. I th ink I had been on them for a matter of weeks. I said, "Oh, okay apart from this rash". I showed her the rash and she went ballistic and said, "You should h ave told me about it. Your body is rejecting it". So I was a little bit annoyed because I just thought i t was one of those things. But I then got put on another drug, Delavirdine, which was named patient at the time. I was on that for years.
719	7	QUESTION: You also said in your statement you think that firs t drug regime led to you having a duodenal ulcer. ANSWER: Yes, yes.
720	7	QUESTION: Since that time, what have been the side effects of the medications as they have changed over the years ? ANSWER: Multiple ulcers, which I have been in and out of hospital. Touch wood, I hope that this has now bee n sorted. It is hard to put your finger on it, really, because you just live with it every day. But appetites, tiredness. I was forever going to see t he doctor about why am I so -- why do I feel so lethar gic and tired and can't concentrate? I was always told , "Well, it could be the hep C, it could be the HIV, it 8 could be the meds for the HIV. We don't know". It has just been an ongoing thing, really. So ...
721	7	QUESTION: One of the concerns you voiced in your statement ab out your medical care is that your HIV care remained in the hands of haematologists. ANSWER: Yes. It was a concern, because they weren't HIV specialist doctors. However, with Dr Wilde, I preferred it that way, because I could have an op en chat with him about things and we literally did mud dle through together. That was a sentence when he reti red that he came out with. And I am still here. So, y ou know, he did all right by me.
722	7	QUESTION: You have said in your statement, in relation to HIV , this: "It is true that today HIV is a treatable disease. This has not always been the case and being diagnos e d with HIV today is not the same as being diagnosed b ack in the 1980s, when there was either no treatment or only experimental treatment available. Some of the medications given at that time did as much harm, if not more, than the virus itself." ANSWER: That's correct, and also this is happening now. Truvada, which I was put on, which was named as the wonder drug only last year, there is now a legal action in America for fatalities of people who have 9 been taken it. I have been taken off it because of kidney results that started to fail, and numerous other people have in this country. This was held u p as a wonder drug only last year. So it carries on.
723	7	QUESTION: Hepatitis C treatment. You have said in your statement that some time after 2005 you were referr ed to see a Dr Mutimer. ANSWER: Yes.
724	7	QUESTION: And you underwent a fibre scan and blood tests. ANSWER: Yes.
725	7	QUESTION: You were offered pegylated interferon and Ribavirin . ANSWER: Yes.
726	7	QUESTION: What was your decision in relation to that? ANSWER: No. At that time I had been involved with Birchgro ve. We were receiving numerous letters from people who had been on this. I asked him -- it was a loaded question. I asked him what the side effects were. I knew what the side effects were because I had spo ken to these people and it was horrific. He came out with, "Oh, well, it is mild flu". I challenged him about this and the meeting did not go very well.
727	7	QUESTION: You also, I think, raised concerns about the interaction -- ANSWER: Yes.
728	7	QUESTION: -- with your HIV medication -- 0 ANSWER: Yes.
729	7	QUESTION: -- and didn't get very clear answers. ANSWER: No, didn't get very far with that either.
730	7	QUESTION: So you declined the treatment. At the time you wro te your witness statement you were receiving reasonabl y regular liver function tests. ANSWER: Yes.
731	7	QUESTION: But the question of further treatment was left open . What's the current position? ANSWER: Now, as of this year, I have got chronic liver disease. There is scarring and fatty tissue. I am going back to see Mutimer in November, hopefully wi th a view to going on the latest medication, if we man age to have a decent talk about it, so ...
732	7	QUESTION: How have the events that you have described affecte d your trust in medical professionals? ANSWER: I have no trust. I have no trust. As [redacted], my partner, will bear out, it's getting worse in the health authorities, especially with haemophilia. M y life has actually been literally threatened -- and that's not an exaggeration, is it? -- twice in the last three years by one doctor asking me when I contracted haemophilia, and at this time I was in accident and emergency with severe internal bleedin g, and yes, it's just -- the list goes on. The list g oes 1 on.
733	7	QUESTION: You have described in your statement an incident in which you were in an ambulance. ANSWER: Yes.
734	7	QUESTION: This was in 2016. ANSWER: Yes.
735	7	QUESTION: Can you tell us about that? ANSWER: That was a burst ulcer. I had been vomiting and passing blood in large amounts. I felt very, very faint. [Redacted] called the ambulance. I thought I was going to pass out. So I automatically, as haemophiliacs do, you reach for your Factor VIII, because there is nobody else can have it. I had a large dose of Factor VIII and sat on the bed. Th e paramedics, two young ladies, turned up. We had a chat. They did blood pressures, et cetera. They wanted to take me to hospital. Took me down to the ambulance, and they were just sorting me out on the stretcher and everything and I asked, "Where are yo u taking me?" She said "Warwick". I said, "Well, I don't want to go to Warwick hospital, I won't com e out of there alive, and also they won't want me". So she said, "Where do you want to go?" I said "Queen Elizabeth". She put the radio, whatever it was, on hands free, 2 sat it there, called through and said, "I have a severe haemophiliac with internal bleeding, blah, blah, blah. What shall we do?" They said, "I woul d rather you took him somewhere else". She said, "That's what we do". They actually had a shift change midway. So we had to work out where to meet the other shift and change ambulance crews.
736	7	QUESTION: How has the risk of exposure to vCJD affected your medical treatment? ANSWER: Quite drastically, and I think it's affected quite a few people and they don't know it. With the ulce rs that I have had, there was one surgeon, [redacted], who ran the endoscopy unit. I had to go there, because this was at the start, with a suspected ulc er, for an endoscopy. He came in and he said, "Oh, it is good news, you don't have to have an endoscopy". Well, I have always been a bit outspoken when it comes to doctors, because you have to be. I said, "I am not going anywhere until you actually perform an endoscopy, because I have an ulcer. I have had one before. I know what it feels like". We argued, qu ite politely, but he bowed down and said, "Okay, I will give you an endoscopy". That came back with nothin g, did it, apart from a hernia. 3 Not long after that I started vomiting blood, so I had another endoscopy, which we -- I think they s aid it was 10 o'clock in the morning. I rang them up a nd said, "Are you sure it is 10 o'clock in the morning ?" "Yes, why?" I said, "Because you don't usually get seen until after 4.00", "No, 10 o'clock in the morning". We got there at 10 o'clock in the mornin g and we weren't seen until after 4.00. That's how i t is. I noticed the endoscope in the blue bag at the bottom of the pile. I sat and watched these others in the yellow bags being used and the blue one was min e. I have spoken to a nurse, a good friend of mine, who is retired from the haemophilia unit. She told me that there was a memo, for want of a better word, s ent out about the non-risk of CJD now on instruments, b ut certain doctors and surgeons were taking it upon themselves to actually still carry out procedures t hat took place a long time ago.
737	7	QUESTION: You do say in your statement that you have had brilliant support from your pharmacist in terms of assisting you to get medication for your ulcers -- ANSWER: Yes.
738	7	QUESTION: -- and for your dental care from the Maxillofacial Department at the hospital.4 ANSWER: Yes, yes.
739	7	QUESTION: I wanted to ask you next, if I may, about the effec ts of the HIV diagnosis on your marriage and your priv ate life. You have described already how very young you were and what happened in 1985. ANSWER: Uh-huh.
740	7	QUESTION: In 1989, your wife was pregnant again. We will be hearing more evidence from her about this later thi s morning. ANSWER: Yes.
741	7	QUESTION: But your witness statement records that when she we nt to the GP, she was told that the baby might well ha ve HIV. ANSWER: Yes.
742	7	QUESTION: You decided, the two of you, that she would have a termination. ANSWER: Yes.
743	7	QUESTION: You have described this in your statement as someth ing that was very much pressured onto a young, scared a nd ill-informed couple. Is there anything else you wa nt to say about the decision-making in relation to tha t and what the doctor said to you? ANSWER: Hindsight is a wonderful thing. We were just so frightened. We didn't get any proper advice 5 whatsoever. We were literally just like rabbits in headlights. It was more than advice about getting a termination; it was actually, "We are leading you down this path", which we took.
744	7	QUESTION: In terms of the day of the termination itself, you have recorded two details in your witness statement . ANSWER: Yes.
745	7	QUESTION: One is the biohazard warnings on the door of the ro om. ANSWER: Yes.
746	7	QUESTION: And the other is you effectively being required to leave the room? ANSWER: Yes. I didn't know half of what [redacted] went through, because I buried my head in the sand. I j ust shut it all out. But I have heard what she had to say. I have pieced it all together now, that particular night when the termination was carried o ut. I was sat on the edge of the bed with her. It was in a very small room. I was told basically to leav e in no uncertain terms, quite rudely. Obviously I h ad other things on my mind at the time. I just though t, "That's quite rude". That ties in with what you wi ll hear [redacted] say later, and I didn't know she'd gone through all that. I just didn't know.
747	7	QUESTION: You have said that you and she never really discuss ed it again.6 ANSWER: We never. We never discussed it again.
748	7	QUESTION: Your marriage had been deteriorating since the HIV diagnosis. ANSWER: Yes, yes.
749	7	QUESTION: You had to give up work. ANSWER: Yes.
750	7	QUESTION: She was caring for you and having to hold down numerous jobs. ANSWER: Yes.
751	7	QUESTION: In the end, you separated. ANSWER: Yes, yes.
752	7	QUESTION: In 1999, after you had separated -- and we will hea r more about this later from her -- she found out she was HIV positive. ANSWER: She did, yes.
753	7	QUESTION: In terms of your career, you had previously had job s that you loved. ANSWER: Yes.
754	7	QUESTION: And there was an exciting moment at which you were offered a fantastic job in the States. ANSWER: Yes, yes.
755	7	QUESTION: You had to turn that down. ANSWER: I had to turn it down because I couldn't -- at that time it was difficult to get a travel visa, let alo ne a work visa. So we just -- again, we never spoke 7 about it. I had the job offer and it literally got thrown in the bin.
756	7	QUESTION: You say in your statement that you not only lost ou t on a career, but the feeling of being useful in lif e. ANSWER: Yes, very much so, yes. You can never get that bac k. Yes. Whether it's the doctors or whatever, you are a disposable commodity that doesn't mean anything, and I think that's why a lot of haemophiliacs strive in whatever career they do to get to the top or be bet ter than somebody who hasn't got haemophilia. I don't know. It is like a challenge. So it's worse to be knocked flat than if you hadn't had haemophilia, that's how I look at it, because we had the challen ge of it anyway, so ...
757	7	QUESTION: You threw yourself into campaigning work. ANSWER: Yes.
758	7	QUESTION: In particular your work with the Birchgrove Group. ANSWER: Yes.
759	7	QUESTION: You describe yourself in your statement as constant ly in fear of the stigma attached to your infections, particularly in relation to the HIV. ANSWER: Yes.
760	7	QUESTION: I wondered if you could tell us about that. ANSWER: Well, a lot of people say there is no stigma to HIV anymore, and in London, no, there isn't, and most b ig 8 cities probably not. I live in a small {redacted] village. I tell you now, if I walked in the pub wi th a red ribbon on, I dread to think what would happen . It is still the same. There is still the same stig ma. Maybe not as violent or as vicious, but there is a lot of stigma around HIV and AIDS, and a total misunderstanding of haemophilia and HIV, even today .
761	7	QUESTION: You have referred in your statement to -- because o f the known association between haemophilia and HIV a nd AIDS -- ANSWER: Yes.
762	7	QUESTION: -- you began to downplay the fact of your haemophil ia and not tell people you were a haemophiliac. ANSWER: Yes. From my teenage years I rode scooters, and al l my friends knew I was a haemophiliac in case I had an accident. I stopped telling anybody that I met, because haemophilia just equated to AIDS. I think I did put it in my witness statement, because again it is sort of gallows humour, but I was on a rally in I think it was Great Yarmouth and a friend of mine shouted across "Oh, you are one of those necrophiliacs, aren't you?" I actually preferred be ing called a necrophiliac to a haemophiliac. That's ho w bad it was.
763	7	QUESTION: You say in the 1980s and 1990s, the fear about AIDS 9 was overwhelming -- ANSWER: Yes.
764	7	QUESTION: -- and there were horrible jokes -- ANSWER: Oh, yes.
765	7	QUESTION: -- everywhere. ANSWER: Yes, yes.
766	7	QUESTION: You would pretend to laugh along. ANSWER: Yes. You would be sat in a pub and, you know, even the crowd of my good friends would tell AIDS jokes and I would just have to sit and laugh, you know. You have to be the third person and remove yourself fro m that. Some quite horrific things when Rock Hudson died and all that sort of stuff. It was terrible. And I think a lot of this mentally has never been looked at. The attitude towards haemophiliacs and AIDS has never -- [redacted] and I closed the door and that was it. We shut the world out. We didn't buy newspapers, we didn't watch the news, because it wa s just terrifying, absolutely terrifying, and then I go out with my friends and it is reinforced that that attitude is there, so ...
767	7	QUESTION: You are still to this day very selective about -- ANSWER: Very selective.
768	7	QUESTION: -- who you tell. ANSWER: Yes. 0
769	7	QUESTION: You have said in your statement that the village yo u live in is not a place in which you would even say the word "HIV". ANSWER: No, no.
770	7	QUESTION: You also describe how there have been occasions where you have been in hospital and a ward sister might call-out in front of our patients -- ANSWER: Yes.
771	7	QUESTION: -- "Your HIV meds are ready". ANSWER: Yes. I think that was when I had my ankle done. T hey take your meds off you when you go in, which I have got a problem with to start with because you need t o take them at set times, and these times never fall in line with when they come round with the medicine trolley. So that was one thing. The other thing is that I was on a public ward and the nurse shouts, "I have your HIV meds for you". It shouldn't happen.
772	7	QUESTION: Over the years from 1985 onwards, what support or counselling, psychological assistance has been offe red to you? ANSWER: None.
773	7	QUESTION: You say in your statement there are no drop-in sessions, no support, no counselling made available , and the only assistance you have had are from 1 individuals such as nurses at the haemophilia unit. ANSWER: Yes.
774	7	QUESTION: Mark Simmons, the social worker attached to the uni t. ANSWER: Yes.
775	7	QUESTION: You have also referred to a benefits adviser from t he MacFarlane Trust. Some individual pockets of assistance? ANSWER: Yes. She was brilliant. She turned my life around . I was in a very dark place. I had no money coming in. I didn't want to fill out any forms or anything. I just couldn't cope. I don't think they do it now , but I was awarded a DS1500, which means sort of imminent death, I think it is death within 12 month s or something. Obviously that didn't happen. But, yes, within a couple of days she turned it all arou nd for me, so ...
776	7	QUESTION: You were involved in the 1991 HIV litigation and yo u recall having to sign a waiver. ANSWER: Yes.
777	7	QUESTION: What were you told? What were the circumstances in which you signed that? ANSWER: We were basically told, "If you don't sign it, nobo dy else will get the money", and that was it. That wa s basically -- I think it was at the office in [redacted], the solicitors' office in [redacted]. We 2 just signed it. That was it.
778	7	QUESTION: You spoke to a solicitor about seeking financial advice after the payment had been received? ANSWER: Yes.
779	7	QUESTION: What was the response? ANSWER: Basically he turned round and said, "Why would you want to? You are going to die fairly quickly. Go out and enjoy it". Again, for the solicitor to be sayi ng that, you know -- because I still didn't believe th is was going to happen. I felt healthy. I was young, but obviously it was going to happen. So we did.
780	7	QUESTION: You were also involved in US litigation -- ANSWER: Yes.
781	7	QUESTION: -- against the pharmaceutical companies in the Stat es. ANSWER: Yes.
782	7	QUESTION: You have a memory of flying out to the States and giving evidence. ANSWER: Yes.
783	7	QUESTION: Or giving a deposition. ANSWER: Yes.
784	7	QUESTION: We have got a record of some of what you said, but you have a recollection of being asked other questions. ANSWER: Yes.
785	7	QUESTION: Can you tell us what your memory is of the kind of things you were asked about? 3 ANSWER: If I had had gay relationships, was I an intravenou s drug user. These were implied, that I was an intravenous drug user. When you read the deposition, I don't think it does justice to how we were treated over there. You were almost a guilty party. I also -- do you want me to say about the blood transfusion subject now?
786	7	QUESTION: Yes. ANSWER: That was after the gay sex and the intravenous drug use, apparently. There was an entry in my medical notes that said that I had had a blood transfusion. Well, ironically, I hadn't, and I know I hadn't, because I had only had one transfusion up until the n, and that was when I was 12 months old. So my lawye r was trying to keep me quiet. She didn't want me to say anything. But I was just so disgusted, because it was a false statement that was entered into my records.
787	7	QUESTION: And the purpose of the question, as you understood it at the time -- ANSWER: Yes.
788	7	QUESTION: -- was to try to suggest that there was a source of infection -- ANSWER: Yes.
789	7	QUESTION: -- other than the American pharmaceutical products.4 ANSWER: Yes, yes.
790	7	QUESTION: It is that memory that led you to say in your statement that you think there were things in your medical records -- ANSWER: Oh, definitely.
791	7	QUESTION: -- that were not true. ANSWER: Yes.
792	7	QUESTION: You are not talking about the records that we have seen but records you have not been able to locate. ANSWER: No, no.
793	7	QUESTION: Can I ask you about the MacFarlane Trust. First of all, your direct experiences in making applications . You applied after the break-up of your marriage -- ANSWER: Yes.
794	7	QUESTION: -- for a grant to do some basic work to your house? ANSWER: Yes.
795	7	QUESTION: You were offered a loan. ANSWER: Yes.
796	7	QUESTION: And that was put as a charge on your house. ANSWER: Yes.
797	7	QUESTION: As a understand it, when you and your new partner t hen purchased a house, the charge was transferred over. ANSWER: Yes.
798	7	QUESTION: Is that right? ANSWER: Yes. 5
799	7	QUESTION: It was then, when the MacFarlane Trust ceased to exist, was wound up, that charge was transferred to the Terrence Higgins Trust, and we have heard that from other witnesses. ANSWER: Yes, without my knowledge.

700

7

QUESTION: In 2000, so five years after the hepatitis C diagnosis, you went on a treatment strike, because you wanted to be on recombinant. Again, we will just l ook at a letter to help put this in context. It is 1387005, please, Henry. It is dated 19th May 2000. It is a letter from you to Dr Wilde and it says thi s: "As you are aware, recently I sent a batch of Factor VIII back to the unit as I was not happy wit h its appearance. I read the letter from Grifols, th e manufacturer, but I am afraid I was not convinced. "In their opinion it may be within the colour ranges allowed, but there seems to have been no specific testing of this batch other than when it w as packed for distribution. "I know that you as a doctor cannot comment and 1 I am also aware that you cannot guarantee to me whe re the blood plasma contained in this product is from, only where it is manufactured." Then you say this: "Well, over the past few months I have had less and less faith in these products, and I feel that a t the moment I would rather risk severe bleeds than treat myself with something that I cannot wholly trust, especially considering the fact that I have already had my health severely compromised with two blood-borne infections. "I am sorry to be a difficulty to you as a patient, but I feel I must write to you and let y ou know of my feelings on this subject. The problem i s only made worse for the fact that there is a synthe tic product that is available to haemophiliacs which co uld reduce the fear and risks of other infections drastically. "You know I have the greatest respect for yourself as my doctor, but I feel whilst I am still prescrib ed human-based Factor VIII, I would rather accept the problems with bleeds as a physical one rather than the anguish of injecting these products with the worry that it has now become." What can you recall about that?2 ANSWER: That was a difficult time. I had a good friend of mine from up north you had gone on a treatment stri ke and he was quite ill. He shouldn't really have don e it, but he did. And I felt very strongly about thi s, because there were certain other viruses that had already been identified, Parvovirus being one. Our immune systems had already been damaged. To expose them to any other virus was just ridiculous. You know, how can anybody do that? So a few of us stop ped taking Factor VIII, and that was it, basically.

701

7

QUESTION: You I think wrote to and got support from Mark Wint er. ANSWER: Yes.

702

7

QUESTION: If you can explain who that was. ANSWER: Dr Mark Winter was -- I don't know where he was a haematologist. I think it was down south somewhe re. But he was a MacFarlane Trust trustee as well. I asked him a statement: "Would you agree with the fact that Parvovirus can and is found in human-deri ved Factor VIII?" He said yes. He also sent a support ing letter that I had to send to the Worcester Health Authority at the time, because it came down to finances, and it didn't matter -- this is the frightening thing -- it didn't matter how efficacio us Factor VIII was, the recombinant, compared to human-derived; it came down to cost and that was it . 3 Mark Winter actually put in his letter that I think it lasted slightly longer -- the recombinan t lasted slightly longer than human-derived anyway, s o you would have to buy less. As soon as they saw th at, we had recombinant.

703

7

QUESTION: That was middle of 2000, we have seen, when you wer e writing, expressing your concern -- ANSWER: Yes.

704

7

QUESTION: -- about what else might be in the products you wer e injecting yourself with. ANSWER: Yes, but I wasn't the only one, so ...

705

7

QUESTION: But it was the very next year, 2001 -- ANSWER: Yes.

706

7

QUESTION: -- when you received letters saying you might have been exposed to variant CJD. ANSWER: Yes, so somewhat proved a point.

707

7

QUESTION: What was the effect on you of being told of the ris k that you had been exposed to vCJD? ANSWER: It was extremely concerning, actually. The hepatit is C had not given me any worries. I had had HIV rela ted illnesses, quite bad ones. [Redacted] and I had -- our marriage had broken up by then, and I had to ta ke on board that this CJD, which was similar to the wa y it was being treated as AIDS was in the 1980s. The re was a lot of shock, horror media stories and you 4 weren't alive very long. Let's put it that way. But again, prioritise it, you know. I hadn't known anybody that had died of it that I know of, s o ...

708

7

QUESTION: If we go back then to the second half of the 1980s, when you had been given the diagnosis of HIV, you were about 21 years old at the time. You were newly married. ANSWER: Yes.

709

7

QUESTION: And you say in your statement that that diagnosis destroyed yours and your wife's lives and changed t he course of those lives forever. ANSWER: Yes, yes. I think I have said to you there were th ree people in the marriage, three individuals in the marriage, and one of them was this big virus. And it did, it just ripped us apart. [Redacted] was 18 wh en we got married. We wanted to buy a house, settle down, you know, do the things that normal people do , and not 12 months after, it was ripped apart, completely ripped apart.

710

7

QUESTION: Can I ask you first about the physical health impac t of infection and treatment. What had been the predominant physical effects of the HIV infection? ANSWER: From -- initially, not much. A lot of mental angui sh, but initially not much physical. I had a lot of so rt 5 of little opportune infections that were all put do wn to being related to HIV. It wasn't until 1999 that I had to go and see Dr Wilde because I had fell seriously ill. That's when we had the conversation about antiretrovirals, et cetera, so ...

711

7

QUESTION: Just before we get to that, you had declined treatm ent with AZT. ANSWER: Yes, I had.

712

7

QUESTION: Why was that? ANSWER: Because some of the haemophiliacs I had seen, to me they just looked worse than the ones that weren't o n AZT. I asked -- I am pretty sure it was Frank Hill -- I asked about AZT, what it was. I was told, "There is no need for you to know, you just take it". That's the sort of attitude, which is why I stopped going. But I am glad I didn't take AZT. That's my persona l choice, and I still think, you know, in some cases it should never have been given, but ...

713

7

QUESTION: As you were just saying, it was around the late 1990s -- ANSWER: Yes.

714

7

QUESTION: -- that Dr Wilde said to you, "Get treatment now or you will be dead within three months". ANSWER: Yes. I went to see him. I was very weak at the ti me. I had oesophageal candida, which is a typical 6 HIV-related illness. He did some bloods on me. We had a chat. I always asked him to be straight with me. He said, "Look, you have never taken antiretrovirals. In my opinion, you have got about three months to live. So go home. Don't take too long to think about it, but have a think what you w ant to do". So I had to go home and have a think about it, so ...

715

7

QUESTION: You have described in your statement you were still unsure whether you wanted to start the medication o r just let nature take its course. ANSWER: Yes.

716

7

QUESTION: But you had a home visit from one of the haemophili a nurses, Sam. ANSWER: Yes, Sam, yes, yes. She was a rod to many of us. She basically convinced me to give it a go. I think sh e said something like, "You can die later if you real ly want to". It's very flippant, but that's the sort of relationship we had with her, so ...

717

7

QUESTION: You did start the antiretrovirals, but the first se t of drugs that you had caused significant problems. ANSWER: Yes.

718

7

QUESTION: What were those? ANSWER: I believe it was Nevirapine. I had -- I was burnin g up, but I had massive rashes on the inside of my 7 thighs, and I actually -- once I had started it, I thought, "Right, well, I am going to carry on". Sam came round and asked me how I was getting on. I th ink I had been on them for a matter of weeks. I said, "Oh, okay apart from this rash". I showed her the rash and she went ballistic and said, "You should h ave told me about it. Your body is rejecting it". So I was a little bit annoyed because I just thought i t was one of those things. But I then got put on another drug, Delavirdine, which was named patient at the time. I was on that for years.

719

7

QUESTION: You also said in your statement you think that firs t drug regime led to you having a duodenal ulcer. ANSWER: Yes, yes.

720

7

QUESTION: Since that time, what have been the side effects of the medications as they have changed over the years ? ANSWER: Multiple ulcers, which I have been in and out of hospital. Touch wood, I hope that this has now bee n sorted. It is hard to put your finger on it, really, because you just live with it every day. But appetites, tiredness. I was forever going to see t he doctor about why am I so -- why do I feel so lethar gic and tired and can't concentrate? I was always told , "Well, it could be the hep C, it could be the HIV, it 8 could be the meds for the HIV. We don't know". It has just been an ongoing thing, really. So ...

721

7

QUESTION: One of the concerns you voiced in your statement ab out your medical care is that your HIV care remained in the hands of haematologists. ANSWER: Yes. It was a concern, because they weren't HIV specialist doctors. However, with Dr Wilde, I preferred it that way, because I could have an op en chat with him about things and we literally did mud dle through together. That was a sentence when he reti red that he came out with. And I am still here. So, y ou know, he did all right by me.

722

7

QUESTION: You have said in your statement, in relation to HIV , this: "It is true that today HIV is a treatable disease. This has not always been the case and being diagnos e d with HIV today is not the same as being diagnosed b ack in the 1980s, when there was either no treatment or only experimental treatment available. Some of the medications given at that time did as much harm, if not more, than the virus itself." ANSWER: That's correct, and also this is happening now. Truvada, which I was put on, which was named as the wonder drug only last year, there is now a legal action in America for fatalities of people who have 9 been taken it. I have been taken off it because of kidney results that started to fail, and numerous other people have in this country. This was held u p as a wonder drug only last year. So it carries on.

723

7

QUESTION: Hepatitis C treatment. You have said in your statement that some time after 2005 you were referr ed to see a Dr Mutimer. ANSWER: Yes.

724

7

QUESTION: And you underwent a fibre scan and blood tests. ANSWER: Yes.

725

7

QUESTION: You were offered pegylated interferon and Ribavirin . ANSWER: Yes.

726

7

QUESTION: What was your decision in relation to that? ANSWER: No. At that time I had been involved with Birchgro ve. We were receiving numerous letters from people who had been on this. I asked him -- it was a loaded question. I asked him what the side effects were. I knew what the side effects were because I had spo ken to these people and it was horrific. He came out with, "Oh, well, it is mild flu". I challenged him about this and the meeting did not go very well.

727

7

QUESTION: You also, I think, raised concerns about the interaction -- ANSWER: Yes.

728

7

QUESTION: -- with your HIV medication -- 0 ANSWER: Yes.

729

7

QUESTION: -- and didn't get very clear answers. ANSWER: No, didn't get very far with that either.

730

7

QUESTION: So you declined the treatment. At the time you wro te your witness statement you were receiving reasonabl y regular liver function tests. ANSWER: Yes.

731

7

QUESTION: But the question of further treatment was left open . What's the current position? ANSWER: Now, as of this year, I have got chronic liver disease. There is scarring and fatty tissue. I am going back to see Mutimer in November, hopefully wi th a view to going on the latest medication, if we man age to have a decent talk about it, so ...

732

7

QUESTION: How have the events that you have described affecte d your trust in medical professionals? ANSWER: I have no trust. I have no trust. As [redacted], my partner, will bear out, it's getting worse in the health authorities, especially with haemophilia. M y life has actually been literally threatened -- and that's not an exaggeration, is it? -- twice in the last three years by one doctor asking me when I contracted haemophilia, and at this time I was in accident and emergency with severe internal bleedin g, and yes, it's just -- the list goes on. The list g oes 1 on.

733

7

QUESTION: You have described in your statement an incident in which you were in an ambulance. ANSWER: Yes.

734

7

QUESTION: This was in 2016. ANSWER: Yes.

735

7

QUESTION: Can you tell us about that? ANSWER: That was a burst ulcer. I had been vomiting and passing blood in large amounts. I felt very, very faint. [Redacted] called the ambulance. I thought I was going to pass out. So I automatically, as haemophiliacs do, you reach for your Factor VIII, because there is nobody else can have it. I had a large dose of Factor VIII and sat on the bed. Th e paramedics, two young ladies, turned up. We had a chat. They did blood pressures, et cetera. They wanted to take me to hospital. Took me down to the ambulance, and they were just sorting me out on the stretcher and everything and I asked, "Where are yo u taking me?" She said "Warwick". I said, "Well, I don't want to go to Warwick hospital, I won't com e out of there alive, and also they won't want me". So she said, "Where do you want to go?" I said "Queen Elizabeth". She put the radio, whatever it was, on hands free, 2 sat it there, called through and said, "I have a severe haemophiliac with internal bleeding, blah, blah, blah. What shall we do?" They said, "I woul d rather you took him somewhere else". She said, "That's what we do". They actually had a shift change midway. So we had to work out where to meet the other shift and change ambulance crews.

736

7

QUESTION: How has the risk of exposure to vCJD affected your medical treatment? ANSWER: Quite drastically, and I think it's affected quite a few people and they don't know it. With the ulce rs that I have had, there was one surgeon, [redacted], who ran the endoscopy unit. I had to go there, because this was at the start, with a suspected ulc er, for an endoscopy. He came in and he said, "Oh, it is good news, you don't have to have an endoscopy". Well, I have always been a bit outspoken when it comes to doctors, because you have to be. I said, "I am not going anywhere until you actually perform an endoscopy, because I have an ulcer. I have had one before. I know what it feels like". We argued, qu ite politely, but he bowed down and said, "Okay, I will give you an endoscopy". That came back with nothin g, did it, apart from a hernia. 3 Not long after that I started vomiting blood, so I had another endoscopy, which we -- I think they s aid it was 10 o'clock in the morning. I rang them up a nd said, "Are you sure it is 10 o'clock in the morning ?" "Yes, why?" I said, "Because you don't usually get seen until after 4.00", "No, 10 o'clock in the morning". We got there at 10 o'clock in the mornin g and we weren't seen until after 4.00. That's how i t is. I noticed the endoscope in the blue bag at the bottom of the pile. I sat and watched these others in the yellow bags being used and the blue one was min e. I have spoken to a nurse, a good friend of mine, who is retired from the haemophilia unit. She told me that there was a memo, for want of a better word, s ent out about the non-risk of CJD now on instruments, b ut certain doctors and surgeons were taking it upon themselves to actually still carry out procedures t hat took place a long time ago.

737

7

QUESTION: You do say in your statement that you have had brilliant support from your pharmacist in terms of assisting you to get medication for your ulcers -- ANSWER: Yes.

738

7

QUESTION: -- and for your dental care from the Maxillofacial Department at the hospital.4 ANSWER: Yes, yes.

739

7

QUESTION: I wanted to ask you next, if I may, about the effec ts of the HIV diagnosis on your marriage and your priv ate life. You have described already how very young you were and what happened in 1985. ANSWER: Uh-huh.

740

7

QUESTION: In 1989, your wife was pregnant again. We will be hearing more evidence from her about this later thi s morning. ANSWER: Yes.

741

7

QUESTION: But your witness statement records that when she we nt to the GP, she was told that the baby might well ha ve HIV. ANSWER: Yes.

742

7

QUESTION: You decided, the two of you, that she would have a termination. ANSWER: Yes.

743

7

QUESTION: You have described this in your statement as someth ing that was very much pressured onto a young, scared a nd ill-informed couple. Is there anything else you wa nt to say about the decision-making in relation to tha t and what the doctor said to you? ANSWER: Hindsight is a wonderful thing. We were just so frightened. We didn't get any proper advice 5 whatsoever. We were literally just like rabbits in headlights. It was more than advice about getting a termination; it was actually, "We are leading you down this path", which we took.

744

7

QUESTION: In terms of the day of the termination itself, you have recorded two details in your witness statement . ANSWER: Yes.

745

7

QUESTION: One is the biohazard warnings on the door of the ro om. ANSWER: Yes.

746

7

QUESTION: And the other is you effectively being required to leave the room? ANSWER: Yes. I didn't know half of what [redacted] went through, because I buried my head in the sand. I j ust shut it all out. But I have heard what she had to say. I have pieced it all together now, that particular night when the termination was carried o ut. I was sat on the edge of the bed with her. It was in a very small room. I was told basically to leav e in no uncertain terms, quite rudely. Obviously I h ad other things on my mind at the time. I just though t, "That's quite rude". That ties in with what you wi ll hear [redacted] say later, and I didn't know she'd gone through all that. I just didn't know.

747

7

QUESTION: You have said that you and she never really discuss ed it again.6 ANSWER: We never. We never discussed it again.

748

7

QUESTION: Your marriage had been deteriorating since the HIV diagnosis. ANSWER: Yes, yes.

749

7

QUESTION: You had to give up work. ANSWER: Yes.

750

7

QUESTION: She was caring for you and having to hold down numerous jobs. ANSWER: Yes.

751

7

QUESTION: In the end, you separated. ANSWER: Yes, yes.

752

7

QUESTION: In 1999, after you had separated -- and we will hea r more about this later from her -- she found out she was HIV positive. ANSWER: She did, yes.

753

7

QUESTION: In terms of your career, you had previously had job s that you loved. ANSWER: Yes.

754

7

QUESTION: And there was an exciting moment at which you were offered a fantastic job in the States. ANSWER: Yes, yes.

755

7

QUESTION: You had to turn that down. ANSWER: I had to turn it down because I couldn't -- at that time it was difficult to get a travel visa, let alo ne a work visa. So we just -- again, we never spoke 7 about it. I had the job offer and it literally got thrown in the bin.

756

7

QUESTION: You say in your statement that you not only lost ou t on a career, but the feeling of being useful in lif e. ANSWER: Yes, very much so, yes. You can never get that bac k. Yes. Whether it's the doctors or whatever, you are a disposable commodity that doesn't mean anything, and I think that's why a lot of haemophiliacs strive in whatever career they do to get to the top or be bet ter than somebody who hasn't got haemophilia. I don't know. It is like a challenge. So it's worse to be knocked flat than if you hadn't had haemophilia, that's how I look at it, because we had the challen ge of it anyway, so ...

757

7

QUESTION: You threw yourself into campaigning work. ANSWER: Yes.

758

7

QUESTION: In particular your work with the Birchgrove Group. ANSWER: Yes.

759

7

QUESTION: You describe yourself in your statement as constant ly in fear of the stigma attached to your infections, particularly in relation to the HIV. ANSWER: Yes.

760

7

QUESTION: I wondered if you could tell us about that. ANSWER: Well, a lot of people say there is no stigma to HIV anymore, and in London, no, there isn't, and most b ig 8 cities probably not. I live in a small {redacted] village. I tell you now, if I walked in the pub wi th a red ribbon on, I dread to think what would happen . It is still the same. There is still the same stig ma. Maybe not as violent or as vicious, but there is a lot of stigma around HIV and AIDS, and a total misunderstanding of haemophilia and HIV, even today .

761

7

QUESTION: You have referred in your statement to -- because o f the known association between haemophilia and HIV a nd AIDS -- ANSWER: Yes.

762

7

QUESTION: -- you began to downplay the fact of your haemophil ia and not tell people you were a haemophiliac. ANSWER: Yes. From my teenage years I rode scooters, and al l my friends knew I was a haemophiliac in case I had an accident. I stopped telling anybody that I met, because haemophilia just equated to AIDS. I think I did put it in my witness statement, because again it is sort of gallows humour, but I was on a rally in I think it was Great Yarmouth and a friend of mine shouted across "Oh, you are one of those necrophiliacs, aren't you?" I actually preferred be ing called a necrophiliac to a haemophiliac. That's ho w bad it was.

763

7

QUESTION: You say in the 1980s and 1990s, the fear about AIDS 9 was overwhelming -- ANSWER: Yes.

764

7

QUESTION: -- and there were horrible jokes -- ANSWER: Oh, yes.

765

7

QUESTION: -- everywhere. ANSWER: Yes, yes.

766

7

QUESTION: You would pretend to laugh along. ANSWER: Yes. You would be sat in a pub and, you know, even the crowd of my good friends would tell AIDS jokes and I would just have to sit and laugh, you know. You have to be the third person and remove yourself fro m that. Some quite horrific things when Rock Hudson died and all that sort of stuff. It was terrible. And I think a lot of this mentally has never been looked at. The attitude towards haemophiliacs and AIDS has never -- [redacted] and I closed the door and that was it. We shut the world out. We didn't buy newspapers, we didn't watch the news, because it wa s just terrifying, absolutely terrifying, and then I go out with my friends and it is reinforced that that attitude is there, so ...

767

7

QUESTION: You are still to this day very selective about -- ANSWER: Very selective.

768

7

QUESTION: -- who you tell. ANSWER: Yes. 0

769

7

QUESTION: You have said in your statement that the village yo u live in is not a place in which you would even say the word "HIV". ANSWER: No, no.

770

7

QUESTION: You also describe how there have been occasions where you have been in hospital and a ward sister might call-out in front of our patients -- ANSWER: Yes.

771

7

QUESTION: -- "Your HIV meds are ready". ANSWER: Yes. I think that was when I had my ankle done. T hey take your meds off you when you go in, which I have got a problem with to start with because you need t o take them at set times, and these times never fall in line with when they come round with the medicine trolley. So that was one thing. The other thing is that I was on a public ward and the nurse shouts, "I have your HIV meds for you". It shouldn't happen.

772

7

QUESTION: Over the years from 1985 onwards, what support or counselling, psychological assistance has been offe red to you? ANSWER: None.

773

7

QUESTION: You say in your statement there are no drop-in sessions, no support, no counselling made available , and the only assistance you have had are from 1 individuals such as nurses at the haemophilia unit. ANSWER: Yes.

774

7

QUESTION: Mark Simmons, the social worker attached to the uni t. ANSWER: Yes.

775

7

QUESTION: You have also referred to a benefits adviser from t he MacFarlane Trust. Some individual pockets of assistance? ANSWER: Yes. She was brilliant. She turned my life around . I was in a very dark place. I had no money coming in. I didn't want to fill out any forms or anything. I just couldn't cope. I don't think they do it now , but I was awarded a DS1500, which means sort of imminent death, I think it is death within 12 month s or something. Obviously that didn't happen. But, yes, within a couple of days she turned it all arou nd for me, so ...

776

7

QUESTION: You were involved in the 1991 HIV litigation and yo u recall having to sign a waiver. ANSWER: Yes.

777

7

QUESTION: What were you told? What were the circumstances in which you signed that? ANSWER: We were basically told, "If you don't sign it, nobo dy else will get the money", and that was it. That wa s basically -- I think it was at the office in [redacted], the solicitors' office in [redacted]. We 2 just signed it. That was it.

778

7

QUESTION: You spoke to a solicitor about seeking financial advice after the payment had been received? ANSWER: Yes.

779

7

QUESTION: What was the response? ANSWER: Basically he turned round and said, "Why would you want to? You are going to die fairly quickly. Go out and enjoy it". Again, for the solicitor to be sayi ng that, you know -- because I still didn't believe th is was going to happen. I felt healthy. I was young, but obviously it was going to happen. So we did.

780

7

QUESTION: You were also involved in US litigation -- ANSWER: Yes.

781

7

QUESTION: -- against the pharmaceutical companies in the Stat es. ANSWER: Yes.

782

7

QUESTION: You have a memory of flying out to the States and giving evidence. ANSWER: Yes.

783

7

QUESTION: Or giving a deposition. ANSWER: Yes.

784

7

QUESTION: We have got a record of some of what you said, but you have a recollection of being asked other questions. ANSWER: Yes.

785

7

QUESTION: Can you tell us what your memory is of the kind of things you were asked about? 3 ANSWER: If I had had gay relationships, was I an intravenou s drug user. These were implied, that I was an intravenous drug user. When you read the deposition, I don't think it does justice to how we were treated over there. You were almost a guilty party. I also -- do you want me to say about the blood transfusion subject now?

786

7

QUESTION: Yes. ANSWER: That was after the gay sex and the intravenous drug use, apparently. There was an entry in my medical notes that said that I had had a blood transfusion. Well, ironically, I hadn't, and I know I hadn't, because I had only had one transfusion up until the n, and that was when I was 12 months old. So my lawye r was trying to keep me quiet. She didn't want me to say anything. But I was just so disgusted, because it was a false statement that was entered into my records.

787

7

QUESTION: And the purpose of the question, as you understood it at the time -- ANSWER: Yes.

788

7

QUESTION: -- was to try to suggest that there was a source of infection -- ANSWER: Yes.

789

7

QUESTION: -- other than the American pharmaceutical products.4 ANSWER: Yes, yes.

790

7

QUESTION: It is that memory that led you to say in your statement that you think there were things in your medical records -- ANSWER: Oh, definitely.

791

7

QUESTION: -- that were not true. ANSWER: Yes.

792

7

QUESTION: You are not talking about the records that we have seen but records you have not been able to locate. ANSWER: No, no.

793

7

QUESTION: Can I ask you about the MacFarlane Trust. First of all, your direct experiences in making applications . You applied after the break-up of your marriage -- ANSWER: Yes.

794

7

QUESTION: -- for a grant to do some basic work to your house? ANSWER: Yes.

795

7

QUESTION: You were offered a loan. ANSWER: Yes.

796

7

QUESTION: And that was put as a charge on your house. ANSWER: Yes.

797

7

QUESTION: As a understand it, when you and your new partner t hen purchased a house, the charge was transferred over. ANSWER: Yes.

798

7

QUESTION: Is that right? ANSWER: Yes. 5

799

7

QUESTION: It was then, when the MacFarlane Trust ceased to exist, was wound up, that charge was transferred to the Terrence Higgins Trust, and we have heard that from other witnesses. ANSWER: Yes, without my knowledge.