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500 | 5 | QUESTION:
Now, you gave that business up during your treatm ent
for the hep c which we will come to shortly but can
you describe the financial impact that the hepatiti s C
has had on you.
ANSWER:
Up until -- all the time I was working I adjusted .
I forced myself. I had to provide for my family.
I had to. I went for as long as I could and worked
for as long as I could but there got a point where
I just couldn't work anymore, the fatigue was so mu ch.
Not only was I endangering myself, I was endangerin g
other people by doing the job I do in it. 6
So it was hard and at the time where it was
really bad, which was just prior to the hep c
treatment, that was the time I decided, "You can't
work anymore and you're going to have to stop and
throw the towel in", and I did.
|
501 | 5 | QUESTION:
You said:
"My career and earnings potential was on target
for an above average person and I would have been a ble
to provide financial security for myself and my
family, including pension arrangements."
ANSWER:
Exactly, yes.
|
502 | 5 | QUESTION:
"Sadly I can't do this."
ANSWER:
No. What money I managed to save has obviously g one
now, yes.
|
503 | 5 | QUESTION:
You didn't tell your children about your infectio n
until your eldest was about 16.
ANSWER:
Yes.
|
504 | 5 | QUESTION:
Can you tell us why that was?
ANSWER:
Obviously I'd seen it happen to so many other
haemophiliacs. I'd seen the devastation it can cau se,
the trauma throughout the families, the
discrimination, the ignorance of some people and ho w
it can upset -- if it was just me myself I could co pe
with it but I wasn't prepared to put my wife and my
family, and especially my children at risk; so 7
I decided yes, they knew I was a haemophiliac. The y
knew I had bad legs. They knew I had injections.
They knew I had to sleep a lot, but I kept it at th at.
I didn't go into the full details, no.
|
505 | 5 | QUESTION:
You remained quiet because you didn't want your s ons
to be bullied at school?
ANSWER:
Yes, exactly, yes.
|
506 | 5 | QUESTION:
You also tried to shelter your own parents from i t?
ANSWER:
Exactly, yes. My coping mechanism was, well, I p ulled
into myself and thought, "I know the truth. I know
what I can do and what I can't. Why burden anybody
else? Nothing's going to change. It's not going t o
change the past. It's probably not going to change
the future", so I cope with it, my problem, I deal
with it my way.
|
507 | 5 | QUESTION:
So you only ever told people who were closest to you
about your infection but then three years ago you m et
your wife and you told her pretty much straight awa y
about your infection?
ANSWER:
Yes.
|
508 | 5 | QUESTION:
What was her reaction?
ANSWER:
Absolutely amazing. I think she said, "I don't k now
how you told me that but it makes absolutely no
difference to me at all, nothing", which amazed me,
amazed me.8
|
509 | 5 | QUESTION:
Before 2012 you were not offered treatment for yo ur
hepatitis C through the NHS?
ANSWER:
No.
|
510 | 5 | QUESTION:
Can you tell us what you were told about this by the
doctors?
ANSWER:
Treatment was mentioned, you know, "Of course, we can
treat your hepatitis C, we can treat your hepatitis C.
Your liver is getting bad. We may have to think
about". But they made it very clear because of my
genotype that the treatment was very severe, the
success rate was 60-ish per cent and I was seeing
other haemophiliacs going through this treatment an d
it nearly killing them -- sitting next to me, exact ly
the same -- and I thought at the moment until someo ne
says to me, "You've got to do it or you should do i t",
I avoided it.
And then I was getting mixed signals from the
doctors, sort of thing. I couldn't figure out quit e
how serious this was. I knew my health was going d own
fast and I still wasn't getting the sort of answers
I was looking for from the NHS. So I started to
research it. With the beauty of the internet,
I started to learn. I thought these symptoms are
looking bad. So I thought I want an honest opinion
here and I want a complete layman that's not going to
9
be biased in any way. I researched it and I saw th is
the guy in London, Mr Richardson, who I knew was
"Mr Liver". He was the guy who pioneered the first
liver transplant. He was George Best's liver
specialist and he had a practice in Harley Street a nd
I researched it and they would do an hour
consultation, including scans and everything. You
could just walk in off the street and people did in
London, they just walk in off the street to have
a general health check, so I thought what I'm going to
do is I'm going to book an appointment and go there as
a complete layman and take all my blood results wit h
me and ask him for an honest opinion, which is what
I did.
|
511 | 5 | QUESTION:
What did he say to you?
ANSWER:
"I'm amazed you're still walking", was the first thing
he said. He said, "Looking at your results, I'm
amazed your still walling here". He said, "I know
a little bit about the scandal with the haemophilia
thing. Why have you not been treated? I just don' t
understand how you've got this bad".
I explained to him I'd researched the treatments
and the reason was for him to advise me what
treatments were available, when they were available
the news for the new interferon treatments was just0
breaking and he said, yes. He said, "The problem w ith
you is you haven't got time". He says, "You need
treatment within the year otherwise you're going to
die". That hit me hard. I wasn't expecting that o ne.
Obviously, they done scans and tests and I thought,
well, where do we go from here. I said I've heard
about these new interferon treatments. You know,
I was literally willing to travel to a different
country to get them and he said, "No, they are not
going to be on the NHS for at least three years".
I said, "Well, how about privately? Is there any
chance we can get them private?" He said, "I'm not
going to see them for probably two", and he said, " You
haven't got that long".
So I felt, I thought, "That's the final blow.
This is it". He said, "Leave it with me", took my
details, obviously my hour was up. I had the scans ;
had the results; I went away.
Within a week I had a phone call from the Royal
London saying, "We've had a referral from you from
Mr" -- I didn't know anything about a referral. He
said, "We'd like to meet you straight away". So it
was literally, "Come on down", sort of thing. So
I jumped on the train and they said, "We've been to ld
that you need treatment straight away. We'd like t o 1
refer you to a drugs trial, to our trial unit", and at
that time they were just trialling the Gilead
sofosbuvir treatment, put me forward for that trial
and I applied for that trial.
|
512 | 5 | QUESTION:
You couldn't join the Gilead trial in the end bec ause
of your liver condition.
ANSWER:
No, I was turned down. Yes, I applied for it. M y
hope was built up, I thought this was it because th ey
were all saying this is the one that's going to cur e
you. I waited about a week and had the phone call and
said, "I'm sorry, because your liver's so bad they
won't accept you on the trial".
|
513 | 5 | QUESTION:
But instead you joined a different six-month tria l.
You can't remember which drugs that involved but yo u
do know that it didn't --
ANSWER:
No. A week later, yeah, the phone rung again. H e
said, "We've found other another trial. Come on do wn
again". So I came on down. They said, "We've foun d
another trial that will take you" and they said the
problem with this trial is it's still Ribavirin and
another drug, which at that time was a test drug an d
just had a long numerical number.
|
514 | 5 | QUESTION:
What were the side effects of that treatment?
ANSWER:
It was made perfectly clear to me that this drug
wasn't aimed at the UK market. It was aimed at the2
foreign market, with people with a darker skin beca use
the main side effect was it was photo-sensitivity,
sunburn. You couldn't stand the light. But I knew at
that stage it was going to save my life; so I'd hav e
taken anything.
|
515 | 5 | QUESTION:
And you did manage to complete the six-month tria l --
ANSWER:
I did three months, with the side effects were --
I say it was designed for people with darker skin.
There's me, a red-haired fair skin; I had no chance .
So literally I couldn't even look out the window. You
had to have factor 50 on indoors, three months,
blisters like you couldn't believe. But I was
determined to do it and I did it, yes.
|
516 | 5 | QUESTION:
And you cleared the virus?
ANSWER:
Yes.
|
517 | 5 | QUESTION:
Having cleared the virus, what's your health like now?
ANSWER:
The damage has been done to my health . Obviously , the
cirrhosis doesn't change. My liver's still cirrhot ic,
it hasn't got any worse, and there are signs of
improvement. I feel -- in myself, I feel better no w
than I ever have done but after clearing the hep c
virus, it takes time. It's not you clear the virus
and within six weeks you're going to be feeling
better. Within six months you may start to feel
marginally better. It takes two years before the
3
energy comes back. I mean, I can go a day without
sleeping through the day now. That's only been for
the last two years. It takes time.
|
518 | 5 | QUESTION:
Before you started the treatment to clear the vir us,
you went to the GP suffering with depression?
ANSWER:
Yes.
|
519 | 5 | QUESTION:
And you went to see a counsellor?
ANSWER:
Yes.
|
520 | 5 | QUESTION:
I think you say you found that counselling helpfu l to
you.
ANSWER:
I did. This was pure -- I've got an excellent GP ,
totally understanding. He knows me and he knows if
ever I go to see him, I'm in trouble. I don't go
there all the time. And I think I was just after
a routine prescription for painkillers or something
and he said, "It's time for me to say to you I'm on ly
going to give you this prescription if you will go and
have counselling". He said, "I think it will reall y,
really help you". I said "okay" and I went. Yes, I
went for a couple of sessions. I think, for me, it
helped me because it was a complete stranger. I to ld
her everything and I'd never done that before to
anybody.
|
521 | 5 | QUESTION:
You were also exposed to hepatitis B?
ANSWER:
Yes.4
|
522 | 5 | QUESTION:
And you've received three letters warning you of your
risk of vCJD?
ANSWER:
Yes.
|
523 | 5 | QUESTION:
In your statement, you have explained that two ye ars
ago you wanted to have ankle surgery at the
Royal Surrey Hospital but this was refused because of
the risk of vCJD, and you ultimately had the surger y
at Basingstoke Hospital.
ANSWER:
Yes.
|
524 | 5 | QUESTION:
In a very recent explanation, the Trust have said that
the reason why they couldn't undertake the surgery was
because they received advice from your haemophilia
centre that the surgery should take place there in the
interests of your safety.
Do you still hold to what you believe to have
been the situation in relation to vCJD?
ANSWER:
Absolutely I do.
|
525 | 5 | QUESTION:
I want to move on to the issue of financial
assistance. After you saw the private doctor, you
applied to The Skipton Fund and received payments f rom
them?
ANSWER:
Yes.
|
526 | 5 | QUESTION:
And you now receive payments from the EIBSS?
ANSWER:
I do.
|
527 | 5 | QUESTION:
Do you have any particular views or experiences i n 5
relation to the process and nature of the schemes o r
the payments that are made?
ANSWER:
For me, it was all done purely on blood results a nd
scan results and it was just done automatically; so
I had no issues with it. It was done quickly and t hey
received the paperwork.
|
528 | 5 | QUESTION:
You have said that you've got -- you have had no
problems getting payments from The Skipton Fund but
you do think the payments you've received are unfai r?
ANSWER:
I do. It's not -- when you have a family, if the y
just took it as the average UK family, the average UK
wage, the average working man's wage, I was earning
more. I wouldn't consider myself as an average wag e
and I worked hard to get it and now -- I paid into the
system for that time and my earnings are about
20 per cent of what I used to earn what I get, I
think. It's barely enough to survive on. I'm stil l
totally dependent on benefits now I can't work. It 's
not particularly ideal. Now I've remarried, I've g ot
two young stepchildren; so we find it hard to survi ve
financially on what's provided, yeah.
|
529 | 5 | QUESTION:
Those are the questions I have for you. Is there
anything else you would like to say?
ANSWER:
I think one thing I would like touched upon is
haemophilia treatment, as it stands now, it feels 6
we're penalised for our infections where I feel we
should be being prioritised, rather than penalised.
Whatever you do, wherever you go, you'll see the --
for example, when I had my ankle and I researched t his
guy hard and I knew he was the best. And he said - - I
explained to him and he said, "Steve, I've got no
problem. You're exactly the same to anybody else.
I would operate on you tomorrow but there's going t o
be a lot of red tape to go through. I myself have got
no problem".
But as soon as it goes through and it goes
through to the different departments, you're flagge d,
you're flagged, we want to know more about this, we
want to know more about the vCJD, we want to know a nd
it just does -- and this takes months, in my case t wo
years, to actually come to fruition and then they s ay,
"I'm sorry, we can't do it". And I was told before it
had all been agreed, it was just a question of you
saying when you want it done and I will do it withi n
two months, and when I say two months, two years do wn
the line they eventually said no.
It's not fair. You get exactly the same for
dental care. I struggle for dental care. If you c an
find an NHS practice that will accept you, which is
hard. It's not great but I found my personal thing if
7
you go to a private dentist they are a bit keener
because they will say, "We treat everybody the same .
We use disposable instruments. You're the same as
anybody else", but unfortunately that costs a coupl e
of hundred pounds. But it should be -- if anything we
should be being prioritised through operations and
general procedures rather than being penalised, whi ch
we are now.
|
530 | 5 | QUESTION:
I am just going to turn my back and ask Mr Snowde n
who, as you know, represents you if there's anythin g
further.
ANSWER:
Sure. (Pause)
|
531 | 5 | QUESTION:
Just one point that Mr Snowden asks me to raise. We
were discussing earlier about the press story break ing
in about 1983 of the link between haemophilia and H IV.
Did the school ever say or suggest at the time
anything about a link between the treatment you wer e
receiving and HIV?
ANSWER:
Not to me personally, no. Not at that time.
|
532 | 6 | QUESTION:
Prior to the infection that we're going to come o n to
talk about, I think you led a pretty active childho od.
ANSWER:
I did, yes.
|
533 | 6 | QUESTION:
What kind of things did you do?
ANSWER:
So normal boy things, just running around, playin g,
certainly at school I did many sports , even though I was
advised not to, but boys will be boys and so I play ed
football and cricket and volleyball and basketball and
I did expeditions and stuff like that.
|
534 | 6 | QUESTION:
You were under the care of the Hammersmith Hospit al from
the 1960s through to 1984; is that right?
ANSWER:
That's correct, yes.
|
535 | 6 | QUESTION:
Then from 1985 you came under the care of the Roy al Free
Hospital in London under Professor Christine Lee an d her
team there?
ANSWER:
That's correct, yes.
|
536 | 6 | QUESTION:
You regularly received blood products during your
childhood and young adulthood?
ANSWER:
I did. I received cryoprecipitate as a child up until
the '70s.
|
537 | 6 | QUESTION:
I think we can have a look at the record from the
haemophilia database. It's 1212002, please, Paul. If
you go down a couple of pages, please.
We can see, Perry, if you look at the screen look
at the bottom of that first screen, we can see 1969
through to 1971 a record of you receiving
cryoprecipitate?
ANSWER:
Yes.
|
538 | 6 | QUESTION:
Then we can see from 1974 onwards and if we look up
through to the 1980s we see you receiving a variety of
different factor products?
ANSWER:
That is correct, yes.
|
539 | 6 | QUESTION:
If we could just leave that on screen for a momen t,
please.
What advice or information, if any, was given as
far as you know to your parents about the risks of any
of these products?
ANSWER:
There was as far as I was aware there was never a ny
advice given associated with the risks to these
products.
|
540 | 6 | QUESTION:
What about to you? You turned 18 I think in 1979 or
thereabouts?
ANSWER:
Yes.
|
541 | 6 | QUESTION:
What information or advice was given to you then as
a young adult?
ANSWER:
Again, no advice associated with the risks of the se
products.
|
542 | 6 | QUESTION:
We can see from this record that the type of prod uct
given to you changed from time to time. We'll see
references to Factor VIII (BPL), and then to Factor ate
and then to various other products throughout the 1 980s?
ANSWER:
Yes.
|
543 | 6 | QUESTION:
Do you recall the products being given to you cha nging
at all?
ANSWER:
I do recall seeing different bottles in subsequen t
visits to the hospital. So some bottles might be
thicker and have a different label on or a differen t
colour and maybe the nurse would say "this is Hemof il"
or "this is something else" and you think, "oh, oka y".
But generically it was the Factor VIII that was mis sing
from my body so it never kind of struck a chord wit h me
to think why are they changing the products all the
time. In hindsight, I assume that it's to do with kind
of their suppliers or their budgetary contracts tha t
they'd made.
|
544 | 6 | QUESTION:
Did anyone ever sit down and talk to you or you a nd your
parents about these changes and why one product was
being used rather than another or whether there wer e
different risks associated with different products?
ANSWER:
No, never.
|
545 | 6 | QUESTION:
Could we go on to I think it is letter 13 July, t he same
exhibit, should be roughly page 5. Could we make t hat
a bit bigger.
Perry, if you look at this letter here you will
see it's a letter from a Dr Worsley to your GP?
ANSWER:
Yes.
|
546 | 6 | QUESTION:
Could we highlight the last main paragraph, pleas e. You
will see it says there:
"We have recently been inviting all our
haemophiliacs to visit the clinic as many of them d o not
see a senior haematologist regularly, particularly
people like Perry who has only moderate haemophilia and
does not develop many problems. We have been
particularly concerned because of the development o f
AIDS in some haemophilia patients in the United Sta tes
who have been using pooled factor products which ha ve
probably included donation from people who were
incubating AIDS."
Then it goes on to discuss the early signs of the
disease. That's July 1983.
Did you ever see that letter?
ANSWER:
No.
|
547 | 6 | QUESTION:
Were the contents of that letter ever communicate d to
you at the time that there might be a risk of AIDS in
1983?
ANSWER:
No.
|
548 | 6 | QUESTION:
Could we go to the next page of the exhibit, plea se.
Could you just make that more visible. We have her e an
extract from the UKHCDO haemophilia database and if you
see, Perry, date last negative 10 January 1984, dat e
first positive 10 July 1984.
Is that material the basis for your understanding
that you were infected at some point in the first h alf
of 1984?
ANSWER:
That is correct, yes.
|
549 | 6 | QUESTION:
That gives the date when last tested negative as
10 January 1984. Do you recall any discussions abo ut
being tested for HIV at that time?
ANSWER:
No.
|
550 | 6 | QUESTION:
Do you recall giving any consent to being tested for HIV
at that time?
ANSWER:
No.
|
551 | 6 | QUESTION:
Do you recall the outcome of any tests being
communicated to you at that time?
ANSWER:
No.
|
552 | 6 | QUESTION:
When was it that you were told that you had teste d
positive?
ANSWER:
I think it was in August '85, if memory serves me right.
|
553 | 6 | QUESTION:
I think you have said in your statement you remem ber
that as a date, you and your wife have remembered t hat
as a date?
ANSWER:
Because it was five years on from that date we
celebrated the fact that I was still alive and we
invited that -- celebrated that with some close fri ends.
|
554 | 6 | QUESTION:
So that was 5 August 1985 is when you recall bein g told
for the first time that you had contracted HIV?
ANSWER:
Yes.
|
555 | 6 | QUESTION:
What can you recall about that communication, tha t
conversation? Who was it with?
ANSWER:
It was with Dr Goldman and a social worker at the Royal
Free. They explained that -- I thought it was just
a routine appointment, so as a haemophiliac we
constantly are in hospital for either treatment or if
we're not going in for treatment and we're on home
treatment then we will regularly go in for check up s
every quarter. So I just thought it was one of tho se to
go on just to see how I was but it transpired that they
started talking about the stuff that had been in th e
news about HIV and haemophiliacs being at risk and
I said oh yeah and then they informed me that actua lly
I was HIV.
|
556 | 6 | QUESTION:
That date is, as you say, embedded in your memory
because of the celebrations you and your wife
subsequently had five years later still being alive .
ANSWER:
Yes.
|
557 | 6 | QUESTION:
Could we get up on the screen in the same exhibit
1212002 what I think will be page 8 of the exhibit.
It's a letter from June 1990. That's the one, I'm
sorry, June 1988. If we just look at the first
paragraph, if you could highlight that first paragr aph,
please, it's not terribly easy to read but if we pi ck it
up the second sentence:
"He has mild haemophilia [refers to the factor
level] ... has been HIV positive since at least Feb ruary
1985."
So whether it was February 1985 or as the earlier
records suggest 1984, July 1984, you weren't told u ntil
August 1985?
ANSWER:
Correct, yes.
|
558 | 6 | QUESTION:
You can take that down, thank you.
What prognosis were you given at that meeting in
August 1985?
ANSWER:
I recollect being told that I had -- my life expe ctancy
was going to be two to three years, I think, at tha t
stage and it was unexpected piece of news and also
slightly -- I think there was slight disbelief in a s
much as I had no ill symptoms at that time. I was still
playing five aside football even though I probably
shouldn't have been. I was still quite young, doin g
crazy stuff, and full of life.
|
559 | 6 | QUESTION:
You say in your statement you felt numb, you coul dn't
grasp the news that was being given you.
ANSWER:
Yes. I mean, I come from a sort of an engineerin g
sciences background and you're always -- kind of pa rt of
my training was to kind of look at the evidence of what
you're being told and then, you know, translate it back
to what's actually happening and it just didn't -- it
didn't make sense. It just didn't make sense.
|
560 | 6 | QUESTION:
Can you remember what, if any, advice or informat ion was
given to you in that meeting?
ANSWER:
I don't believe there was much advice at all beca use
still at that stage it was a prognosis which was fa irly
bleak, so there was no advice because there was not hing
you could do.
|
561 | 6 | QUESTION:
You say you knew presumably from the news about t he
risks from sexual transmission?
ANSWER:
Yes.
|
562 | 6 | QUESTION:
You can't recall whether that was discussed or no t in
that meeting?
ANSWER:
No, I'm pretty sure it wasn't discussed. They ma y well
have known that I was a Christian and that I wouldn 't be
practising sex outside of marriage anyway.
|
563 | 6 | QUESTION:
The way you have described the impact of that
information being given to you in your statement is
this:
"I was left to my own devices to go home and
absorb the information that I would die young. I w ould
suffer and die a horrible and painful death. The
outlook was bleak and terminal."
That pretty much sums it up in your words.
ANSWER:
Yes. I mean, it's like I suspect for many people here,
either for those people that have suffered, are
suffering and for those people who have cared or lo oked
on as other people have suffered. It is a very sta rk
and bleak prognosis and there's nowhere to go. The re is
nowhere to go with those kind of feelings, so yeah.
|
564 | 6 | QUESTION:
That was 1985. Can we look at a letter from
26 September 1986.
Paul, it is 1212002. I think it should be pages 8
or 9 or thereabouts. That's the one, thank you. C an we
go down to the next page, thank you. Could you
highlight, please, the last paragraph.
This letter, 26 September 1986, says this:
"In conclusion, Perry Evans is clinically well at
the present time. His abnormal liver function test s are
almost certainly due to chronic non-A non-B hepatit is 0
which is commonly seen in people receiving factor
concentrates."
Then there is a reference to recent weight loss
and other matters being kept under review. Were yo u
told in 1986 that you almost certainly had non-A no n-B
hepatitis?
ANSWER:
No, I was told I had non-A non-B, but that was a few
years later.
|
565 | 6 | QUESTION:
If we look at an earlier document in the same exh ibit,
please, Paul -- I think it is the fifth page of the
exhibit, that's it, thank you -- this is November 1 990.
Could we highlight the second paragraph beginning " Many
haemophiliacs", and the paragraph after that as wel l.
So this is a letter which refers to exposure to
non-A non-B hepatitis for many haemophiliacs who ha d
been treated with clotting factors or other blood
products and it tells you that you tested positive on
that date in 1990.
ANSWER:
Mm-hm.
|
566 | 6 | QUESTION:
Is that the first you knew that you had what is n ow
referred to as hepatitis C?
ANSWER:
Yes, but at that stage, you know, they hadn't iso lated
the Hep C part so -- so yes.
|
567 | 6 | QUESTION:
That information contained in that 1986 letter th at you
almost certainly had non-A non-B was not shared wit h 1
you?
ANSWER:
No.
|
568 | 6 | QUESTION:
We can take that down, thanks.
Then I think a number of years later, I don't
think we need to look at the documents for the purp oses
of your evidence but in about 2004 you then receive d
information to suggest that you were at risk of vCJ D?
ANSWER:
That's correct, yes. I'd been exposed to it but again
that was via a letter. I think I'd heard that ther e was
a risk, a theoretical risk, that that might have
happened and then I got the letter. But again
I didn't -- there's not a lot of communication arou nd
that information in terms of what I should do, what kind
of impact that was, what treatments I should have o r
explore. So, again, it was just news, move on.
|
569 | 6 | QUESTION:
We can see, Perry, from the documents that you ha ve
exhibited to your witness statement infected with H IV
probably from infected blood products in the first half
of 1984 but told for the first time in August 1985.
Infected with HCV known to doctors since 1986 as no n-A
non-B but 1990 that you were told.
One thing that you say in your statement is that
you believe you were repeatedly tested for various
infections, including hepatitis B?
ANSWER:
Mm-hm.2
|
570 | 6 | QUESTION:
But without your knowledge; is that right?
ANSWER:
That's correct, yes, and I -- that's just by me g oing
back over my notes and seeing what was written. I mean,
it's not -- maybe I'm slightly ignorant but I didn' t
think it was commonplace to request your notes and go
through them to check to see what people are writin g
about you. It's only in these, kind of circumstanc es
that you necessarily need to do that.
|
571 | 6 | QUESTION:
Can I ask you that impact then that early diagnos is in
the 1980s had on your personal and family life, so the
HIV diagnosis. Before you met Heather, your wife, what
impact did it have on your relationships and on you r
everyday life?
ANSWER:
So on relationships, it made me think that having
relationships would be out of the question, certain ly
becoming a father would definitely be out of the
question, and really it put a big question mark on what
my life was going to be like.
Up until that time, you know, I had dreams of
getting married, having a family, reaching retireme nt.
But once that news came through, all of those dream s
were gone and the impact on my mother and my sister was,
you know, sadness and, you know, especially for my
mother who I think maybe in the haemophilia communi ty
mums feel it a lot harder because they feel respons ible
3
for passing that gene down. So to now have HIV as
a consequence of the haemophilia in terms of the
treatments was, you know, it's not great.
So when I did start -- I did start having
relationships with young ladies but what I found wa s
this thing, this HIV, this terminal illness that I had
was so big that I could not not share that news wit h
those people and so usually within the first couple of
dates when you're, you know, still trying to get to know
someone you take the relationship into a place that is
so deep you think it was always a risk because it w as
always a risk that, you know, I wouldn't feel bad f or
the person or the young lady if she turned round sa id
I don't want anything to do with you because that's too
much or I thought we were just going out. This is a bit
heavy, you know, whatever. What other small talk h ave
you got?
So I would never feel bad about it but equally,
you know, I like to think I'm fairly open, honest a nd
upfront and I could not live with myself without sh aring
that with someone who I wanted to be intimate with. So
it either -- it was either a kind of very short
relationship or it was a relationship which got to
a point and then it went really deep very quickly, so
I don't know if that answers the question.4
|
572 | 6 | QUESTION:
It does. It answers it beautifully, thank you.
You then met Heather your wife in 1987.
ANSWER:
Yes.
|
573 | 6 | QUESTION:
How did telling Heather happen?
ANSWER:
Well, we'd been -- started going out once. I mea n,
I got to know her through the church that we both w ent
to. The interesting thing was that she was never a t the
church that I went to because her job was doing sch ools
theatre work, so she was in the car all the time wi th
her theatre team and so she was very rarely at the
church on Sundays, which is when I was there.
Anyway, we met up and we got to know each other
a little and then I asked her out and then after I think
the second date we went out, taking her dog for a w alk
and it was a nice leisurely walk and we were talkin g and
I just said, "I need to tell you something", and th at
was it.
|
574 | 6 | QUESTION:
What was Heather's response?
ANSWER:
Oh, that's a good one. Well, foolishly I think I said
something like, "It's all right, I'm not going to d ie",
which I don't remember saying but Heather swears th at
I did say this.
I think Heather understood a little of the
enormity of what I was sharing but it wasn't until she
shared it with some close friends that she was livi ng 5
with that she understood the full enormity of what it
was.
|
575 | 6 | QUESTION:
You said in your statement, Perry, that when you became
engaged there was, as it were, a common understandi ng
between the two of you that you'd die soon, that th ings
would get nasty and that you wouldn't be able to ha ve
a family.
ANSWER:
That's correct and I -- going back to this point I made
about relationships becoming very serious very quic kly.
We started going out in the June or July of '87, I went
off overseas for two months in September but I'd sa id to
Heather, "I'll know by the time I come back whether I'm
going to marry you". So that's, like -- it's like
fast-track marriage really, you know, and then we w ere
engaged by Christmas and then we were married withi n the
year and that being, you know, HIV was probably par t of
that as well.
|
576 | 6 | QUESTION:
There was an occasion you've described in your st atement
when Heather came with you to the Royal Free --
ANSWER:
Yes.
|
577 | 6 | QUESTION:
-- to meet the consult consultant and the social worker.
ANSWER:
Yes.
|
578 | 6 | QUESTION:
What can you recall about that?
ANSWER:
So, again, it was a meeting just to kind of have
a consultation with the doctors and see how we're 6
getting on and I thought it would be a great opport unity
for Heather to come and go to the Royal Free and se e
what I've had to put up with through all my life an d
meet the doctors who were generally nice and pleasa nt.
The way it turned out was somewhat different.
They grilled her and laid it on her that, the
consequences of what she was doing in marrying me a nd
did she really, really want to go through with it, which
was a little surprising to me and to Heather as wel l.
Walking away from the hospital, I was in shock real ly,
and I think Heather was as well. So it was just li ke
I didn't expect that and that was, like -- that was not
good. It was not a good experience, yes.
|
579 | 6 | QUESTION:
You and Heather did marry.
ANSWER:
I think so, yes.
|
580 | 6 | QUESTION:
But your health started to deteriorate in the sen se that
you began to suffer chest infections, pneumonias ni ght
sweats and then you began AZT treatment in
August 1990 --
ANSWER:
Yes.
|
581 | 6 | QUESTION:
-- for the HIV and then interferon in 1992, June 1992,
for the HCV.
How were those treatments?
ANSWER:
So the AZT was horrible. It's just with a lot of HIV
and potentially -- and also HCV drugs that they've used,
7
I always recognised that we were being guinea pigs and
I was very, very happy to be a guinea pig if it wou ld --
you know, in the knowledge that I might not come th rough
this but if they learn something and they can use
something, or discard something then that's better for
the people that come behind.
So the drugs are very toxic and they have
a variety -- depending on which one , they have a va riety
of side effects. The AZT made me extremely anaemic .
I had to have full blood transfusions to accommodat e the
anaemia. I just thought I was getting unfit becaus e
I would walk up a flight of stairs and then have
to ... you know, I think I was still in my 20s then so
I just thought I was unfit, but it transpired that my
haemoglobin was very low.
With the interferon, at that time I only had
a short course. I had some slight flu symptoms but it
wasn't particularly bad at that time.
|
582 | 6 | QUESTION:
By the time you got to 1995, you had to stop work for
a long -- for a while, because of the -- whether it was
the original infection or the consequences of the
treatment, it was simply too much for you?
ANSWER:
Essentially, what's happened was that my T cell c ount
had been at zero for two years so there was -- ther e
were no effective drugs that I was aware of and tha t 8
I was being prescribed and so my condition had gone , you
know, from a reduced CD4 count down to a zero and s o the
CD4 count is an indication of how well you can figh t the
disease and so -- in 1995 I got to a point where I was
just so tired, so, so tired that I could only just, you
know, get up, get to work and then come home, eat a nd go
to bed and I did that for a few months and then
I thought this is crazy, you know, absolutely crazy , so
I had to stop work.
|
583 | 6 | QUESTION:
There was a course of anti-retrovirals you descri be as
making you violently sick and you didn't think you would
be able to carry on with them?
ANSWER:
Yes, that was like the first generation of
anti-retrovirals in 1996 I think and there was only
a couple that were around at that stage but the one that
I was on, just on occasions, on many occasions you take
them but within half an hour to an hour you'd see t hem
again, but I don't know. You know, I started to
tolerate them more or I managed them better and the y
started to work.
|
584 | 6 | QUESTION:
Then there came a point I think you were able to go back
to work around 1997?
ANSWER:
Yes.
|
585 | 6 | QUESTION:
Then having believed, you and Heather, for the fi rst
years of your marriage that you wouldn't be able to have 9
children you started to explore the possibility of
having children through sperm washing?
ANSWER:
Correct, yes.
|
586 | 6 | QUESTION:
You described that in your statement as a physica l and
highly emotional journey?
ANSWER:
Yes.
|
587 | 6 | QUESTION:
But your son Isaac who I think is sitting there w ith you
was born in 2001 as a result of that treatment?
ANSWER:
That's correct, yes.
|
588 | 6 | QUESTION:
But August 2002 you had a further diagnosis ?
ANSWER:
I did. I contracted non-Hodgkin's lymphoma which at the
time and it may -- yes, at the time it was directly
related to the HIV virus in as much as it was an
AIDS-defining illness associated with HIV.
|
589 | 6 | QUESTION:
What was the impact of that diagnosis on you and
Heather?
ANSWER:
So that was enormous.
|
590 | 6 | QUESTION:
You were hospitalised for near enough six months .
ANSWER:
Yes, yes. So having trained as a project manager , I was
able to project manage the treatment and the doctor s to
the point where if they came into my room and they
didn't have the answers that I expected, then I wou ld
make them accountable.
I'm not a particularly nice patient when I'm in
that mood, but it was extremely effective to the po int 0
where they would need to huddle outside my room and have
a pre-meeting before they came in to my room to exp lain
what was happening and what the progress was.
So for six months I was on chemotherapy and then
I would have a week of rest for my blood counts to
recover so that they need to recover to get to the next
cycle; so yes.
But the devastating thing about having the cancer
was that Isaac was just about a year or so, just ov er
a year, and ... yeah it was hard.
|
591 | 6 | QUESTION:
I think you've put it beautifully in your stateme nt,
Perry, where you say:
"I had survived HIV 17 years from being told I had
it and we found joy in the birth of our son Isaac", and
then you had the devastating news of the cancer and the
need for chemotherapy?
ANSWER:
Yes.
|
592 | 6 | QUESTION:
We've got a picture which you very kindly provide d which
gives an indication of the gruelling nature of the
chemotherapy.
I wonder if we can put it on the screen, please,
Paul. It should be 1212005. That is later on, I'm
sorry. In that case it's the other photo, please.
ANSWER:
I think it should have a spoiler alert on some of these.
|
593 | 6 | QUESTION:
That's it. That's you at the time that we're tal king
1
about.
ANSWER:
Yes. One of my better-looking photos, Yes, I mea n, it's
typical chemotherapy and, being a haemophiliac,
obviously where the cannula or the Hickman line goe s in
when they pull it out, or whatever they do, it's ni ce
bruising. I think all the haemophiliacs can relate to
that.
|
594 | 6 | QUESTION:
You and Heather decided that you would try for an other
child --
ANSWER:
We did.
|
595 | 6 | QUESTION:
-- a little while later and your daughter was bor n in
early 2005.
ANSWER:
Correct, yes.
|
596 | 6 | QUESTION:
One of the things you've told us in your statemen t is
that around this time you appeared in a documentary ?
ANSWER:
I did.
|
597 | 6 | QUESTION:
A BBC documentary called Stephen Fry, HIV and me.
ANSWER:
Yes.
|
598 | 6 | QUESTION:
We're going to show a clip from that with your
permission but can you just tell us, at the time th at
was being filmed can you recall what you had been t old
about your prognosis and life expectancy?
ANSWER:
Yes, I was suffering with not only HIV, chest
infections, pneumonias but also the impact of the
hepatitis C. My body weight, I'd kind of lost load s of 2
body weight and I was frail and weak and I really - - you
know, I felt as though maybe I wouldn't have that l ong.
One of the drivers for doing it was to try and
remove some of the stigma and educate people about HIV
and I know that, you know, lots of people can't do that
and I, you know, I respect that but I felt as thoug h
I could so I did.
|
599 | 6 | QUESTION:
We're going to play that if we can, I hope. It's a few
minutes.
(Video played)
ANSWER:
Can I just say that there was some reference to d ates
while I was speaking and I don't think that those d ates
were actually accurate whereas the dates you have a re
accurate.
|
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