Unnamed: 0 int64 0 47k | index int64 0 357 | q_a stringlengths 22 51.4k ⌀ |
|---|---|---|
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 t... |
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
Fact... |
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... |
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
... |
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 infect... |
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 a... |
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... |
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
relationsh... |
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 o... |
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 ever... |
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 h... |
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 ava... |
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 ... |
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 ... |
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 -- ... |
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 ... |
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 ... |
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 ju... |
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 ... |
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 o... |
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... |
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... |
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 ... |
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
... |
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... |
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... |
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 ... |
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 t... |
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... |
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.
|
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