Issue 10April 2004

Solihul, B92 9WA

As you will almost certainly know by now, JohnBeld finally ended the wait and toid us how rnuchand who would get money for those infected withHCV C20,000 foreveryone with a PCR+ result andanolher e25,000 for those with cirrhosis. Moneyfor those with HIV and those cured by interferon,noth ng for those who cleared it naturally andnothing for the families of those who died beforeAugust last year lt is to be called 'The Skipion Fund'and is named after a building next door to theElephantand CasUe underground station whlch hasDepartment of Health offices in it.

A number of reactions to this appeared in the pressand also you rnay also have heard the reports onRadio 4 Women's Hour (February 2nd) with aninterview with Harriet Bullock and focussed on thedenial of payments to widows and on You AndYours (March 12) about Pete Longstaff taking hiscase to the European Court of Justice. Harrietspoke passlonately about the death ofher husbandfrom Hepatitis C and that she will be denied anymoney from the fund while Pete highljghled theneed for a public inquiry inlo the deaths andinfection of blood products.

The Depanment of Heallh announced recentlythatall NHS patients that have received a bloodtransfusion during the 1980's will be now barredfrom donaling blood in an attempt to curb theincidence of vCJD being transmitted further in thepopulation. UK blood is not welcome n olhercounlnes as they too see our blood stocks as being"too risky" to use.

This shouid be a wake up callforlhe rest ofthe UKto accepl that a public inquiry inlo UK blood andblood products use is extremey impodant for usall to be aware of the isks, to learn from mistakesand to have confidence in the NHS as well as bringthe truth behind the cover ups to light

l\.4aybe the Department of Health are plann ng totrace back the 50,000 or so blood donor recipientsfrom the early 1980's and ofier them all HCV testsand counsell ing too.

In this issue of Birchgrovewe aim to bring the facts,as we knowlhem, relating to the Hepatitis monetaryotfer and responses to this as well as recentpaiiamentary commentary medical news as wellas regular afticles and updates.

Email: birchsrove 1 @hotmail.com

a pu[lic inquinyinto Ul( ilood and iloodpnoduct$ u$e i$eiltnemely impontantlon u$ all...C|lITTEITT$Page 2DoH Ex-Gratia Hep C SchemePage 3Birchgrcve ResponsePage 4+5A Welsh ResponsePage 6Lord Warne/s Por* PiesPage 7ReadeF Letter to llPPage 8+9Men OnlyPage 10+1 1Working Out with the 3 HbPage 12+13Medical ]{ewsPage 14+15Diary DatesPage 16US LitigationPage 17Woodland GrovePage 18Bob the BleederPage 19Gontacts and lnformatlon

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T0 JOm{ F'EID.

Ri . Hon . u r . L rOnn Ke rOHea f th Sec reLa ry

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Rictmond House79 wh i t eha1 lLondonSW1A 2NS

a o i - ' - . ^ - . a - : - - F C o v 6 r n m - n . r a r - r ' l o l . , / - e c o g i s - d \ a d e p o l i ! s C

infecl lon has had a l inancia l impact on the haenophi l ia conLlruni ly and that i t has

e n n o L n . e o _ r s o x - g o : a p a ) m e ( s o ' l 0 n p d s s : o n a c e g o ' . d s .

we feel however Lhat th is is an insul t inq and moral ly indefenslb le of fer af ter many years

of campaigning by the haemophi l ia conmuniLy and l ls supporters There have al ready been

around 200 deaths f ron Hepat i t is C infect ion atone ln the UK haernophi l ra populat ion and

an unknown number of HIV and HCV co lnfected paLienEs that have died of end staqe l iver

l a i l u r e .

I t rEh palments to pa!1enls wi th hdenophi l ia infected in lhe Republ ic of l re land around

€ 1 4 0 , 0 0 0 , T h e R o s s C o n m i t t e e ' s r e c o n r m e n d a l l o n o f f 5 0 , 0 0 0 a n d a r e c e n t l e g a l r u l i n g o n

H e p a ! i l i s C i n f e c t i o n l h r o u e r h a b l o o d p r o d u c L s e t a t € 7 5 , 0 0 0 ( n i t h a c c e s s ! o f u r t h e r

amounts i f the condi l ion deter ioraLes Doyle v Baxter HeaLlhcare Ltd) , how can your

d e r i s o r y o f f e r o f € 2 0 , 0 0 0 f o r a l i f e t h r e a l e n i n g v i r a l i n l e c t i o n b e p e r c e i v e d a s " f a i r "

or " reasonable" as you stated?

How can you c la im to be st f lpathet ic or compassionale when widows and lami l ies of those

a l r e a d v d e c e a s e d a s a r e s u f E o f L i v e r f a i l u r e d u e t o H e p a t i L r s r e l a t e d c i r r h o s i s a r e n a d e

exempt f rom th is pa).ment?

How can you defend vour decis ion to exclude widow's pa] 'ments and st i l l sav Lhis schef t re is" fa i r and reasonable" ?

Both canada and the Republ ic of r re land hdve had no- l iabi l i tv palments, which are deemed

moral and compassionaEe- Why does the UK government see iEsef f d i f lerent in i ls t reatment

of people wi lh haenophi l ia Lhan i ts European and Commonlteal th couslns?

Your recent responses lo requests for a Publ ic Inquiry inEo the provis ion of contaminatedr r R . ! . , - F F 6 n r - v r ' r . f r r l

p r d c r ' c o s w a r - e J r p - o y e o " , " l l - d l a n l n q u : ' y s n o ' o n s j o e l e o j d s l : i - ' o " a o " w ' d o r o

th ink i t is the way forward".

Dear John Reid,

W . w o r l d l i k e L o \ r o w l o w y o u c d r d c c e p l -have never been openly invest igaied?How can other countr ies such as l re land

a a - c \ ' - r l - ( c d n n o L l

Yours s incerely

3 rd March 2004

- t r ) a F m . o v F d i f h e v

have a Publ ic lnquiry which does not deal n i th

Do you not aLso feef a moral obl igal ion to let the very people who have been infected

with b lood born v i ruses, and lhe fami l ies of lhose who are no,r '7 deceased, decide whether a

Publ lc Tnquiry would be " just i l ied" or " the way forward"?

! , { e w o u l o w o o m e a r e e t ' r g w r l h \ o u r s e . l - ! o o ' s s s L h e s e ' s s . _ s , o L y o u r c o - l v ' ' l : _ ' _

We look forward !o your reply and responses to our quesl ions contained in th is let ter '

BIRCHGROVE

, . , FROh{ BIRCE{GE OVE

To John ReidDate 7th February 2004

. Ref: Exclusion of widows from Government fayour, rather then legal obligation scheme for HepC. Lords 5/2104

Dear John Reid MP (Secretary of State for Health)

letter dated (28th June 03), requesting an appointment to speak with you conceming the above ex-gratiascheme? I will be inshucting my legal advisels to proceed with a Judicial Review of yourannouncement (23rd Jan 04) with regards to its illegality and unfaimess. I repeat my request for an

Ministers are elected to uphold the law, not act with profanation or to procrastinate when consideringthis injustice and legal dilemma.

A Welsh Respon$e...

Itt slt,ort, it

tt,oulcl 0ppe0rMay I begin this letter by reminding you and asking why? I stitl have not received a response to my tllAt lhg

Goyenutterttimmediate appointrnent to discuss the above and what I can only describe as your dereliction of dury.

ClOSgtl itS gAfS

to.fitrtlterAnomaries: ]rgulneltt. f20.000 considerably less than the figures arrived at in orler jurisdicrions (e.g. Ireland. Canada) and

t I t t | | I (less than the f,50,000 suggested by the Ross cornmittee for the Scottish scheme; also less than thengs ror HIV inrectio"

,ru L(ltil nen tal s , , ,. Those whose partne$ died before the August cut-off date (the date the alnouncement was made that

therc would be a scheme) are to be left with nothing.

Possible grounds for review :

l. lllegalityt a.s to the widows' situation,ahe failure to take account ofrelevant considerations (loss andfinancial need), and taking account of irelevant considerations (saving of public money; too muchweight being given to the desire to presewe the principle that no compensation is given for no-faultinjuries caused by a public service)As to haemophiliacs' position, fail]urcto take account of th€ir needs, and the best estimates arrived atby everyone who has tried to calculate these figures; f20,000 appears to be driven by a whollyirrelevant consideration - an estimate as to how much money the govt is prepared to pay out overall,divided by the likely nos. of claimants.

2. Procedural impropriety: whilst the Haemophilia Society was consulted, it appears to have beenconsulted only as to detail - it would appear from Lord Morris' comments in his Feb 2004intervention in the House of Lords that the HS does not feel it has been consult€d about thefundamentals of the scheme. In short, it would appear that the Govt closed its eals to furtherargument on the fundamentals - who would be compensated and how large the payments would be.And certainly Haemophilia Wales has never been approached in relation to any ofthe issues.

3. Irrationality: this is a long shot, but conceivably it could be argued that the scheme is irrational - souffeasonable that no reasonable health minister could have arived at it.

I would ask the minister to consider three points of which I think may help when making theirconclusions.

1. Morally, was it right to sacrifice and exclude a minority patient group from a safer supply(British donor population), to protect the majoriXy of th€ population frorn the ,,higher knownrisk" from imported blood products?

2. Legally, is it right to hide behind th€ privileges of Government to conceal any embarrassment

over the handling of this matter?

3. Ethically, was it right for the rnedical profession to avoid telling patients the risks fmm

contaminated producls because they had no t€st or treatment?

If the curent Secrctary of State for Health would indulge the haemophilia community by showing them

a copy of the product safety licence issued by govemment, required under the Medicine Act of 1968 for

all imported Foducts to the UK for medicinal use, then we may have our fust clue to how this so called

systematic failwe stated.

For no other reason then, I think the haemophilia community deserve an explanation after their display

of humility and patience over the many years that have past.

It is not surprising that there is so much confusion conceming this matter, when even the cunent Lord

Warner (minister for health), 24ll/04 and the Prime Minister, Tony Blair PM need to be corected on

their use of the word compensation (quote ) l4l1llol .

"Govemment hsve made it clear therc is a limil to the amou of compensqtion thqt we can pay".

The PM was referring to the haemophilia population who over the past 25 years have been infected with

HIV, Hep C and now it seems VCJD by contaminated blood products given by the NHS. As I'm sure the

PM is well aware that compensation can only be made when it is proven that Govemment are

responsible, for what has been seen by many ministers from all party's, (quote) Lord Morris "?ftis is

the wont, treatment disoste\ in the history of the National Health Senice, a baged!, indeed" .

Sadly this has never been resolved in a court of law, due to the fact that government refused to allow

evidence to be submitted, as requested in Rule 14, of th€ British L€gal Syst€m. Re: Sunday Times

Article 5th August 1990 page 1.7: " Ilaernophiliacs demand end to official secrecy'.

Lord Morris has been the only person speaking ftom the heart about this matter.

I think any mtional person would have to agree, in the curent situation, the Haemophilia community

hold the Moral High Ground. After listening to the debate last Thunday and many more over the past

30 years, in both chambers of our Parliament. This fact is probably an even bigger "hagedy" then the

issue they have been discussing.

I might add it is worth considering Lord Owens remark " if this issue ever gets to a court oflaw

govemment would not have a leg to stand on legally". All I know for sure is the fact that "shortly", one

or the other of the two departments, of this or future cabinets, will have to show some humility to eat

their humble pie, because in my curent state of health, I could barely throw my little book of calm at

them.t'-1

U Ol 'e l ' l l l l l € l l | 1r1,11awarr vour resDonse.

hcn,e nxlcle itclectr tltere iso limit to the

. ?

UlllOLlllt O/ lwirt tir, or people I would like to discuss this with : James Callaghan (Lord), Dr David owen (Lord),

a:)tltpetISttf loll

thctt v'e cun

Yours Sincerely,

IIAYDN WILLIAM LEWIS(Secretary Haemophilia Wales)

John Reid (MP), S. Orme (Lord), Mr Justice Ognall (QC), Mr Justice Rougier (QC), Kenneth Clarke(MP), Sir Donald Acheson (CMO), Maryaret Thatcher (Baroness), Tony Blair (PM)l

This is an edited version of Hoydn's letter and Birchgrove is very happily to email a copy of the fullletter to arry one who requests it, enail us at birchgrove I @ hotmail.com or write to us at the address on

the back.pct)'...

I[|RD WARNER AND HIS Tt|t|NEY TUNESsth Feb 2004 Answer Lords

Lord Warner: lvly Lords, the awards that weremade in lre and and in Canada folowed publicinquir es or crim na charges wh ch establishedthat wrongfu practices were emp oyed. Thepayment structures of those schemes weretherefore based on cla ms for punitive damages.We do not acknowledge any such wrongdoing inEngland, so it is not fair to make a compansonbetween those schemes. The l,4acfarlane Trustwi I be involved in the adm n stration of thisscheme, but there are signlf cant d fferences TheGovernment's policy is as I set out in the answerto my noble frlend.

However Lord Warner ought to read moreabout the awards in the republic:

Contents of letter from Malcomson LaWRepublic of lreland 17th Feb 04.

(A) The non statuory Hepatitls C Compensat onTribunal "predated" any public nqu rynvestigation.

(B) The statutory Hepatitis C CompensationTr bunal "predated", by a most two years, theestalllishment of the Lindsay Tribunal toinvestigate the circumstances of infection ofpeop e wth Haemophll ia with HIV and/orHepatit is C.

(C)The commitment of the lrsh Government toreverse the 1991 HIV compensation Settlementoccurred in advance of the commencement ofevidence before the Lindsay Tr buna . Also, thenecessary leg slation was enacted prior to thedelivery of the Lindsay Tribunal Report

(D) At no juncture has the lrish Governnrent, inrelation to any claim by a person withHaemoph lia before the r sh couds, acceptedliability, i.e. filed or delivered a Defence admittingresponsibility.

So the r sh Governement does not think that theawards it made "were based on claims forpunitive damages" but Lord Warner does whodo you think is ight???

Content of letter from Ann Mccrane AssPrincipal Officer, Blood Policy Division,Department of Health in the lrishGovernment of the Republic of lreland.'1 3th Feb 2004

" To summar se, the Hepatit is C & HIVCompensaton Tr bunal is a no-faultcompensation scherfe for persons who wereinfected wlth either Hepatitis C, or HIV or bothfrom the admin stration within the State ofinfected blood or blood products. Cornpensationfor persons with Haemophtlia was made oncompassionate grounds, without lega l iabiity onthe pad of the State."

"Also, as the scheme of compensation was a no-fau t scheme, there was a perception that any

restrictions on access might be interpreted asan implicit admiss on of l iab l ity".

Birchgrove would like to know it LordWamer keeps up to date on this lssues asit is his job in the House of Lords. He mightbe new to the issues of bad blood but hemust already have plenty of experience ofbad policies.

THE TRUTH IS NOT NEGOTIABLE

t heHepa t r t i sC& l - l lVOol rpersaton l l ' ibunal is ano- far,ilt cor-t Ipensatrrtl

trifected tr,rth eli l.-or |--]epa.ii is C,or l-ilv or bolh l'ronr rheadmin stra.iion withrrr lhe Stateof infected blood or [] ocdproclucts

Haemophilia: Review of1970s and 1980sTreatmentsLord Morris ofManchester asked HerMajesty's Government:What progress has been made in the Deparlment ofHealth's inquiry into the disclosures made by theLord Owen conceming decisions taken while hewas a Health Minister in regard to impons ofblood lbr the featment ofpatients withhremophil ia: and \ hen rhe) e\pecl rhe inquiry toconclude.IHLl4l9] ' l

The Parliamentary Under-Secretary of State,Department of Health (Lord Warner):A review is being undertaken by the Department ofHealth to clarify the facts suffounding the supplyof blood products in the 1970s and 1980s Thereview is based on papers available liom the timeand it is hoped to make the conclusions of thereview known in due course

(Birchgrctle t'or d like to know if this revie*, willbe conducLed openll, and in public and x'hetherthey v'ill be askiry any people vith Haenophi[iainfected v,ith t iruses, courtesy of the NHS, fortheir input itlto this reviev,. lt v,ould also beitlteresttig to see ho\r lottg ttJier people haveaccepted their ex-grdtia pocket nonet that thisreview is made public. If eter)

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A weekend held in Solihull on 12-14thMarch 2OO4 funded by TheMacfarlane Tlust. Over the weekendthere were talks about making themost of the organisations locally andnationally, Birchgrove, Looking afteryourself-by Martin Bedford, whichincluded a stop smoking initiative aswell as tr€e complementary therapies,one - to -one appo in tmen ts w i thClaudette Allen or John Morris, a quiz,a sw imming poo l and end lessopportunities for MFT regastrants totalk urith others.

Booze, Black Tiesand Bongos!Friday AM, Looked out of the window andmyfirstlhought was "shit, snow in lv1arch".Oh well take it easy and head for sunnySolihulland the first ever Men onlyweekendfor Positive Haemo's plus one or hr'vo fromthe Eileen Trust. Whal will it bring? Should Istay at home and wait for lhe clash with thosecanaries from NoMich? (Norwich are top ofthe league and flying and Cardiff's form lately,well looks like we could be on a hiding!) | decidedit would be nice to mset uo with old friends andhopefully make some new ones So decided onBooze, Fags and Late Nights and off lwent....

After a nice dow drive I arrived at venue and as Iget my bags out of the car l'm welcomed by somemad Englishmanl Hugs and kisses all round andthen straight to the bar

l'm not sure who came up wilh the title'Pub Quiz',but it reminded me more of an episode ofMastermind. But we all had a laugh and somejntelligent lots from England took first prize. Asteward's enquiry was called for when il becameclear that one ofthe organisers was on thewinningteam! But no sour grapes from me....bastards- abottle of plonk would have been nice.

The rest of Fiday night was taken up with plenty ofwalering for the liverand a gatecrashing ofthe finalhour of a Charity Auction (black lie and women innice dresses) So a load of Haemo's in shorts andsandals just mingled in with the crowd virtuallyunnoticed. Still not sure why, bui we attracted theattention of one ortwo'wellto do' ladies who were

impressed with the efforts we had gone to withregards gaining entry to their bash. One of our party

even prevented a mass riot when twoelderly gentlemen (not used to theeffects of alcohol) had a little'walkingsticks at dawn' disagreement. It waslike being al a football matchl). Fun over.we retire to the barto be entertained by amember on the bongo drums ( l ' l lment ion nonames).

Saturday up for breaKast and feeling OK-ish andready forthe start. 'Welcomes' at 10.00am followedby Fichard Oakley'Howto identifl/ localand nationalsuppon and information services and getting themost out of them.'

Dicky boy was his usual politically correct formersocial worker self who had seen the lightl He gave

an inleresting breakdown on what was availableand how to go about accessing services andinformation.

This was followed by Paul Bateman giving us anupdate on Birchgrove, The Woodland Project andNewsletters. Even now after all these years one ortwo people were unaware of the amount of workthat Birchgrove has achieved during ils existence.

So a loadof Haemo's

in shorlsano

sandalsi r r q tJ L.,r v L

mingled inwith the

This was followed by yours tru y, Gareth Lewis.presenting a paper outlining a new piece of workrelating to'representation and challenging thepolitical and health problems faced by Postive colnfected Hamemophiliacs' wh ch were not beingaddressed by others.

Midday and back for rnore Health and Ftness t ps

from Martin Bedford and Ny'ark Askham. 'Explore

the obstacles to be ng as well as you can be andhear about one mans experience of transformationfrom "a weedy bleeder" to a 16 stone body bui der'.

Sounded good to me so lgave it a go. Took myseat and looked forward to what may come. Goodstad - the 16 stone body builder' had a bleed andcouldn't make it.

Did he drop his dumbbell's on something I wonder?But l\ lartin nrakes up for lt with a realy good

workshop on looking after yourself. This covered awide range o f top ics wh ich inc luded Hea l th ,Framework for disease prevention, Factors affectinqheath and Changing therapeutic relationships. Thiswas very interesting but I had a funny feel ng it wasleadinglosomething complelelydifferent. l 'veseen[,4artin in action before and was anticipating theshock that would be revealed in the afternoonsession.

Lunch came and went and we're back in action at2pm "Look ng atter yourself" with Martin lvly fearswere soon realised asthe main theme was smokingand its effects on you and your irnmune system.But it was really informat ve and again I'm go n9 togive up smoking tomorrow orWednesday. Reallyenjoyed this session as l\y'artin s one of thosespeakers who actually invo ve all those in theaudience and puts people at ease very soonand allows indivduals the opportunity toexpress their concerns on allmatters relatingto Haemophila and HIV Again, well donel\.4art n and thanks.

I d idn ' t par take in any o f thecomplementary therapies but feedback from those who did was verypositive.

Saturday n igh t was d i f fe ren t w i th 30 oddhaemophiliacs and others descending on the localcurry house for a nneal. Njce food, shame aboutthe spiral staircase (our party was split into twogroups which really was notthe best way forthingsto end that Saturday). After we all were fed andwatered it was straight back to the hotel for alast session n the bar before leaving on Sundayto reflect on the weekend and give our iversa chance to recover. My thanks to all thoseinvolved in the organ saton ofthis event andI ook forward to the next onel

Gar€th Lewis

Health and Fitness... or not!Since none of you sent in articles on heath andfitness we are assuming that most of you are as fitas the comm ttee and the only exerclse you get iswhen you have to hobble for a bus. However N/arkd d write this for us about his bodybuild ng. As hecouldn't make his talk at the [,4en Only Weekendwe have pub ished his story for a I to read and b,einspired. This may be yourchance to avoid the sandbeing kicked in yourface on the beach th s summer.We'd also ike to wish lvlark uck as he is due toenter a bodybu i ld ingcompetition next year

and we expec th i m t o b eGovernor o fCallfornia by2050. Even ifit s only thev i l lage o fCa l i fo rn ia , onthe north Norfolkcoast.

crowd,,

My name is Mark, I'm 29 have severe haemoph liaand HIV and Hepaiiiis as a result of the bad b oodscandal in the 1980s. Grow ng up with haemophi iawas very difficult as was hard y ever allowed top ay sport at school. Sport was in my blood as myfather was a keen sportsman and I longed to beabe to play footbal and rugby. I did rebel, as Iwanted a normal life and also the chance to seenow gooo was.

I ended up with hav ng trials at Wakefield Cityfootba I club a sem profess ona team and theywanted me to sign for them, but I dld suffer a badinlury to my anke, which never realy recovered,and I had to stop playing. lt was a huge wrench toleave the c ub as I really enjoyed t there However,ldid provethe doctorswrong who had always beenanti sports of any kind.

I then decided to turn my attention to bodybu lding- | had just left university wilh a degree in Bus nessand Fnance in 1996 and whilst lwas trying to fndajob I had a lot of spare time on my hands. I wantedto improve my appearance, as lwas very thin backthen - we gh ng about 10 stone.

I had been teased at school for my appearanceand also the contraptions the doctors used to makeme wear on my ankles etc - not sure to this daythat they did any good. I had tr ed worklng out inthe past, but had always gven up usually after 3weeks as I used 10 see no improvement whatsoever

about bodybuilding before I was under tn" fOOd a n f^lrp.essron that al you leeoed to do was to lift | \'/ \', \'^ L'(r | \'

rn ro inh t tnnv v\-,/r\y'r I L L\-/1,/

soon, , ,

I was eatingtoo little ofthe right

and a lso exper iencng some b leeds as we l l .However, this t me I was determined 10 succeedand I wou dn't be stopping after 3 weeks.

THE PLANI set my sta I out differently this time - learning frommy mistakes in the past. I d dn't rea ly know much

technlques.

Before, I was eating too itt e of the right food andlrying to litt too n'ruch weight too soon which I thinkcaused the b leeds . I bought my f i rs t se t o fdumbbells, a very l ight palr and I also bought thefoods, which I was advised by the magazines thatwere healthy and also conducive to putting muscleon. Foods like: Turkey, Chicken, Steak, Tuna, andPasta.

THE WORKOUTHowever, I still thought that al this research andthe things I had bought might prove to be a wasteas I was prone to bleeds in my upper body, inparticular - elbows and shoulders. I remember thefirst time I tralned. On the one hand looking foMardto it, but on the other being cautious, as I didn't

My progress since I statTed is recarded in the table below:

Wobm ilumb€r ot Ble€dsDurftg Yoal

BEFORE WEIGHTLIFTING

1996 10 stone 104

STABTED WEIGHTLIFIING

Eqrl!||ffil Usod Wdgml.||bdeg, Eench Pr€ss

1997

1998

1999

2000

2AA1

2002

2003

40 Kilos

70 kilos

B0 kilos

90 kilos

100 kilos

120 k los

140 kilos

12 stone

14 stone

15 stone

15 stone 6 lbs

16 stone

17 stone

'16 stone Tlbs

Dumbbells & Barbell at Home

l\ilulti Gym al Home

Joined a local Gym

Gym

Gym

Gym

Gym

I have farfewer bleeds

now ano alnl- rrrnrnI \ J L I I I \ J I U

want to experience a bleed like I did before, as nTyelbow would literally seize up - not being able tomove it for a week or more. I therefore decided tobuild up gradually like I was advised in the musclebooks - just lifting light weights to start with.

This seemed to work, as I had no after effects. Onthe other hand my muscles absolutely ached andached as theywere in shock dueto not being usedto it. I started training 3 times a week for the first 3months and wow - | was slading to grow I couldsee a "chest" beginning to appear and a little bit of"peak" on my biceps.

My confdence, which was non-existenl before wasstailing 10 improve as I was getting comments like- "Have you started working out lvlark?"

MY DIETBreaHast:3 Shredded Wheat (!), Tuna Shake; (2 tins of tuna,strawberries, 1 banana, 3 scoops of proteinpowder, pint of skimmed milk)

Mid Morning:2 Bananas, Protein Shake f3 scoops of Prateinpowdel

Lunch:Chicken Whopper from Burger Kng or ChickenSandwich from subway, 2 tins of tuna

Mid Aftemoon:2 Bananas, Protein Shake (3 scoops of Proteinpowoet)

Dinner.Roast beef and Vegetables

Workout and Post Wo*out neat:Serving of Creatine Monohydrate and L-GlutamineProtein Shake (3 scoops of Protein powdeo

Suppen 1602 Sirloin Steak or 3 Chicken Breasts,Salad, Prawns, Boiled Rice or Fruit

CONCLUSIONHaemophiliaThe results speak for themselves - | used toaveragea bleed twice a week before I sladed training. Ihave had 7 in 7 years . wh ich is a rass ive

improvement. However, my doctor/physiotherapiststi l l advise me not to l i ft weights, which I think isridiculous considering that I have far fewer bieedsnow and a lot more confidence for the lirst time inmy life.

H'VI have never had any trouble with HIV as I haven'tbeen on any medicaiion. I know that only a smallamount ofthe virus is present in me, which meansl'm not going to get i l l in the near future, I think thisis also due to working out and living a healthyiifestyle.

Hepatitis B and CThe above viruses have damaged my liver and myliver is inflamed as the liver biopsy proved. I did goon a course ofa pegulated intederon and ribarvironand managed to combine this around my training.I used to have my injection in my ieg every Fridayafter a workout, pick my ex-girlfriend up and thentry and get over the side effecls over lhe weekend.

These were horrendous: extreme fatigue, insomnia,loss ofappetite to name a few I used to start feelingbetter Sunday evening and l 'd go for a 2.5 mile jog

late in the evening - just 10 try and kickstart me abit in preparation for work the next day.

After 3 months ofthis I had to stop as thetrealmenlfailed to clear the virus, which was disappointingafter spending everyweekend forthe last 3 monthsliving like a zombie. ljust try and look after my liveras I iead a healthy lifestyle, drink moderately and Iensure that ltake all the vitamins, minerals andherbs, which are beneficial to the liver. Herbs suchas [,4ilk Thistle. and Dandelion are very good alongwith vitamins and minerals like Selenium, Cholineand Inositol.

CONTACTlf anybody is in'terested in finding out more aboutrny experiences with working out then please

contafi me.

My e-mail address is markmcloc@aol.com. Iwould be more than happy to help anybody.

(. Please Note - a Canadian study recentlyhighlighted hepatic problems for people taking MilkThistle when they have Nevirapine Mramune) asparl of their HIV combination)

r'.,nnfir'inrrr"'nv\_./ |

t\l\Jt t\-/\f

for the firsttime in my

l i fn t u , , ,

Tnials ol peginterfenonwith HIU/HGU coinlectedThe ong-awated resu ts o f the in te rna tona lAPRICOT t r ia l were presented a t a recentconference. 868 patients l iving with HIV/HCVcoinfection were treated with ether Pegasys andribavirn (FBN), standard interferon (lFN) andrib'avrin, or Pegasys aone. The results are givenas sus taned v i ro log ic responses (SVR, thenternat onally recognised success rate):

lPlHlT overall Genotype 1 cenotypes 2&3

identified early so can somet mes provide resultsthat are betterthan what happens in the more usualgroup of patients at a hospital.

The people in the French BIBAVIC study werecons dered harderto treat and this could mean thalthis study s more ike the real wor d than the others.Th s was because they accepted people wjth moreadvanced liver disease and conversely people withconsistent y norma ALT scores and so, hopefully,much less disease.

There was a so a higher propofrion of injecting drugusers in this study who are felt to be more ditficultto treat by some. Drop out rates in this tral andserious adverse effects were also noticeably higherthan the othertwo but when you look only at thosethat completed the course in the RIBAVIC study36"o had an SVR, t 'eqLently described as a 'cu€'.

This is much nearer the 40% seen in the APR COTtrial.

The ACTG 45071 tria was disappointing becauseits early results looked so good as quite a lol ofpeople stayed PCR negaUve all the way throughthe treatment (41%) but then the virus reappearedand was detected three months after treatrnentstopped leaving only 27% wilh a'cure' . As alwaysseems to happen with tria s the answers are morecompllcated than the questions.

For people with HIV and genotypes 2 or 3 othepatitis C there was sadly no good strong evidencethat six months s enough time to treat these typesbut then nor was there strong evidence that 12months was necessary ether. Overallthis suggeststhat the decis on to take Hepatitis C treatment sharder for people with HIV

The effectiveness is noticeabe belowthatfor peoplewith only hepatit is C and the drop out rate isgenerally higher. Your own circumstances and thestate of your HIV infecton are very rnpoftant nmaking this decision.

MEDICAL NEWS

PEG+RBN

PEG alone

IFN+RBN

r0r€ tdt7l

PEG+RBN

IFNtRBN

14Vo

200k12v"

12Vo

33%120k

This is the largest trial of pegylated interferon inHIV/HCV coinfected patients ever conducted.Better results have been achieved in two lrials wlthHCV monoinfected patients using this pegy atedcombinat on, with Genotype 1 SVB results of 46%and 51% compared with 29% fron, this trial.

A sim lar tria (RIBAVIC) w th a total of 412co in fec ted French pa t ien ts t rea ted w i th acombination of ViraferonPeg or standard intederon,and ribavirn, was also reported with poorer successrales (274/a overall SVR with 15% SVB for thosewth Genolype 1

An Amercan trial, ACTG A5071, with just 133co inJec ted pa ten ts , compared the Pegasyscomb na l ion w i th the s tandard in te r fe roncombrnation. The results were broadly similar tothe FIBAV C trial. This is the laroest trial ofTl -e s l -d tes have d f te e l t r esu ts a rd poss io lv th is | | | , I r | | r r \ , /sbeca.setheoeop,eraknsrhe,nrerrerorwe.e n OeOVlateO Intenefon In HIV/d i f fe re l t s i tua l o .s . No ' re were exc lJsVe ly o r | \ JJ

haernophiriacsandn"" ""'1""ff#"Jjli: HCV coi nfected patientst$xtrlt:i:unlr:hr;sr:: ever conducted, , ,

NICE Appraisal ofPegylated Interferon

Technology Appraisal Guidance 75 for interferon alfa(pegylated and non-pegylated) and ribavirin for the

Eeatlnent for chronic hepatitis C was issued by the

National Institute for Clinical Excellence in January2004. It is due for review in November 2006, a process

that will begin by consultation a year before that date.

Basically they think Pegylated Interferon should be

the teatment of choice. Also that teatment is notrecommended for those with mild chronic hepatitis C,

although this will be reviewed in August 2004 oncethe results of two clinical trials investigating teatmentin this type of patient are available. You can look at

the website www.nice.org.uldcat.asp?c=101627

Research Shows FirstEvidence That VaccinePossible for MultipleStrains Of Hepatitis C

Researche$ have found new hope in the battle againsthepatitis C, the No. I cause of liver failure and livertransplantation in the United States. Studies at fteSouthwest Foundation for Biomedical Research offerthe first evidence that a vaccine against all stains ofthis elusive virus should be possible, sincechimpanzees that have previously clearcd infectionwith one strain of the virus show protective irnmunityto multiple strains.

While a vaccine could be years away, the finding issignificant. Scientists previously had thought that pdorinfection with hepatitis C virus (HCV) only producedimmunity to the specifrc shain with which one hadbeen infected, said lead investigator Dr. Robef E.Lanford.

In an article published in the Joumal of Virology(February 2004),SFBR scientists found thatchimpaEees that had cleared previous infection withgenotype I later showed protective immunity whenrechallenged with seveml different HCV strains. Thatwas true even when the animals were challenged witha highly complex mixture containing strains fromgenotypes 1,2,3 and 4 - the four major genotypesaffecting most HCV victims around the world.

Dr. Lafford explained that this finding has significantimplications for eventual development of an HCVvaccine "because it means when we arc able to makean effective vaccine and irnmunize a population, peopleshould be protected against all strains ofhepatitis C towhich they might be exposed."

(SOURCE:Southwest Foundation for BiomedicalResearch) hbv_research-list-owners@mail-list.com

EATG PRESS RELEASEThe European AIDS Treatment Group supports USactivists in denouncing the unexpected move takenby Abboft Laboratories that has increased the U.S.wholesale price of its 100-mg capsules of ritonavir(Norvir(r)) to five times its former price.

"We strongly support all actions undertaken by USactivists, and we'rc prepared to confront any attemptsto raise the pdce of Norvir in Europe", says wimVandevelde, EATG member, who coordinates theEurcpean's response to Abbott's move

"As a long-term facilitator in the relationship betweenpatients and the pharmaceutical company, the EATGdoes not accept the rationale for the increased price asoudined by Abbott. The company has already had theopportunity to fairly eam profits on this molecule andrhe EATG sees this as an example of price gaugingand monopolistic behaviour" says Mauro Guarinieri,Chairperson of the EAIG, addirg that the move toraise the price ofNorvir(r) is not in the interest of publichealth, nor is it in the long-tem ilterest of thecompany. Patients, clinicians, govemments and stock-holders will not accept such arbitrary and €xaggeratedincreases in price.

The EATG rcquests Abboft to rcverse its decision andretum the price of Norvir(r) to its original value andwill take further actions if the company will notreconsider its unfortunate decision.

For more information, please contactMauro GuarinieriChairperson, EAIG @nglish, Italian)at +39 347 9631837 or mauro@eatg.org

this a$ anexamplc ol pnicegauging andmonopoli$tiGbghauioun..

RecomIinant One theory is thatFacton there is too much

product in the systemand hosoitals areactually running out ofstorage,,,

Gan HIU dnugsprotcct again$tHIU?8 March, 2004 BBC News Online

Does a drug that can protect against HIV alreadyexist? lt is a queslion beirg asked oy a growingnumber of scientists and doclors.

Sorne doctors have pressed for a full-scale trial tosee if Tenofovir (by Gilead) can protect humansagainst HIV Three such triais are now underway."Whal we want to see is how safe it is for peoplewho are nol infected" "We will not know until theend of two years whal the etfect is,"

"There is always the hopethat itwillofFer proteclion.Otherwise we wouldn't bring i l to this stage." "This

drug has been shown to be safe for people whohave HlV" says Dr Ward Cates of Famiv HealthInternational (FHl).

All of these trials are at very early stages. "lf this isfound to be effective, it will be to HIV what oralcontraception was to pregnancy," says Dr Cates."lt will make it much more easier to protect againstHIV '

the UK's first dating agencyfor people living with sexually

Birchgrove have been alerted to some patient'sexperiencesaccessing Recombinant FactorVl 1 1.It has been alleged that a number of centres havenot yet supplied patients eliglble for recombinantwith the treatrnent, the centres blamethe UKHCDOand the UKHCDO blame the cenlres.

"After all the nonsense following the DoH decisionto phase in recombinant treatment on age basis itseems ridiculous that the system has not workedprope4v and professional hea th carers a€ passirgthe buck." Said one Birchgrove reader.

Birchgrove are concerned that this may havein'rplicalions for next years roll out, if this situationcontlnues.

It has been reponed that a number of patientsaround the country have received recombinantfromtheir nursewith absoiutely no information orsupportgiven about taking a new product, a nurnber ofpeople have been given old stocks of Recombinantwhich is running out of date and iold not to bring itback. One theory is that there is too much productin the system and hospitals are actually runningout of storage, whilst some are not actually receivingit yel, and the over 40's are having to wait another18months.

flhe Haemophilia Society now have an InformationFactsheet available for information on Recombinantclotting factors)

llT$ DatingAn enterprising couple has set up what it believedto be the UK's first dating agency for people livingwith sexually transmitted diseases such as HIV(DTS stands for 'Diseases Transmlfied Sexually').It is a commercialventure which aimslo help peoplesuffering from relational and social isolalion thatsuch conditions can bring. The agencywas recenllylaunched with inlerest from the HIV and nationalpress.

DTS Dating LtdP O B o x 1 1 8 1 6Birmingham835 6YDTeVIat 0121 748 1312Email off ice@dtsdating. comWebsite wM/w dtsdating.com

Effi;{ffffiJ3[iiXff"J#"!",J"::'"ff:li transmitted d iseases,,,

The largest international event on research onhepatlt s B virus - "The lnternatlonal lVeeting oftheMolecular Biology of HepaUt s B Viruses" will beheld on October 24 27, 2AO4, at the l\ larineBiologlcal Laboratory Woods Hole, l\y'assachusetts,USA. For further information please visith t tp : / /www. m b l . ed u /h ous tng /co n fe rences /hbv_meeting.html

1sth- 17th April 2004

CardiffCity Hallwillhost the 1oth Ann versary BritishHlVAssociation Conference. Birchgrove have beenkindly offered a community Scholarship Award tothis event and a report w ll be available in the nextissue of Birchgrove. Visit www.bhiva.org oremail bhiva@bhiva.org

Haemophilia Society-Annual NationalConferenceSaturday 26th June 2004 1oam-5pmBurleigh Coud Conference Centre, LoughboroLrghUniversily, Lelcs.

The Societies AGI\.4 will be held at 1 oam followedby "New directions for the 21st century", "Medical

Developments" and various workshops. Th s is aone day non-resldential event. Please contact theSociety for more information.

HEP CTheorganizersof the 1 1th InternationalSymposiumon Hepatitis C Virus and Fe ated Viruses, takingplace on October 3rd to 7th 2004 in the conferencecenter ( 'Stadthalle') of Heidelberg, would l ike tobring to your attention the offcial website for themeet ng. Please v sit w\e.whcv2004.com for thelatest news about the meeUng organization and theprogramme.

Hepatitis c Mentorins iilH:HConference Conference10 June, London

The Hepatit s C l\lentoring Conference ls an annualevent, which is organized by people affected withhepalit is C for peoole aflecreo w t.r hepatit is C.

The mentoring conference provides delegates withthe oppodunlty to dlscuss;

. Tl-e key issLes lor HCV- ind.vidJals

. How to meet the needs of HCV+ ind viduals

. Empowering the HCV+ community

The conference, titled "Preparing to C changes", isorganised by The UK Assembly on Hepatitis C, anational forum representing the needs and viewsof hepatit is C positive {HCV+) individuals. Theconference is pa t ien t - focused and th roughinformation provision and exchange, we aim toencourage HCV+ individuals to make their ownchoices about their support, testing and treatmentoptions. Davinla Springer, Development worker forthe UK Assembly on Hepatitis C, Hepatitis B.

Something For The WeekendSeptember '1 0/1 1,/12Following the highly successful event for people affected by haemophilia and HIV in 2002, .something forthe Weekend" returns.....reloadedl The weekend wil l be in Stafford on September 1Olj 1/i 2 and is spon-sored by the l\lacfarlane Trust, put it in your diary now and we will be making further announcements inthis newsletter and through The N,4FT wthin a few months, The MFT will also be mailing everyone directiywhen booking stads. We look forward to seeing you there, don't be square, cuboid or matrix-shaped."The SFw-Feloaded planning team."

U S L I T I G A T I O N U P D A T E

..IU[|T WI|RKIIUG Ft|RTHE YAIUKEE II[|LIAR''Heather FosterLead Attorney LCHB

fa

The emphasis will be on the person obtaining theirown records. However if a person has tried everypossible way to obtain the required records, we

"As of yet, there is still no dead ine for seeking to can assist if necessaryjo n the Class Action. The answer of course ls thalyou should lodge your claim the sooner the better, This may involve:as we constantly have 10 report to the Couft andto defendanls an accurate taly of the numbers of . WriUngto hosplta ontheirbehafclients we represent. But there is no deadline yet.lf the defendants seek to impose one, we wil of . Advising to contact previous solicitorcourse advise you rnmediately. i.e. (for those who received a payment from the

MacFarlane Trust) contact ng the solicitor whoLots of sufierers have registered an initial interest originally hand ed their claim for a copy of theirin the Class Action but have failed to follow this up file notes although there may be a charge forby completing the necessary forms. lfyou fall into thisthis category it is vital that you relurn a I paperworkto Anderson Eden as soon as possible. Contacting LCHB, or any other interested party, to

see what further steps can be takenThe itigation is progressing we L Updates weresent to cients about a month ago. A procedural/ lf you have any queries in relation to points dealtd rections hearing is to take place soon before with above please contact either Lynne Wilson orJudge Grady in Chicago. There wlll probably be a Denis Whalley at Anderson Eden Solicitors:lot more news to report following that hear ng. Lynne Wilson

lynne.Wilson@andersoneden.comA'cut-off dale'does applyfor deceased claimants 01772 272 OB1un ess certain criter a apply. This is because of the Denls WhalleyCalifornia Statute of Limitation (SOL) law This cut- denis.whalley@andersoneden.comoff date is 31st [,4ay 2001 and means that LCHBwillbe unableto represent thefamilies of thosewho (Lieff, Cabraser, Heinmann & Bernslien,have died before this date.

Hawever, the exceptional criteria to this are asfollows:

. The deceased person had a partner or spousewho is HIV and/or HCV positive

. Or the person had surviving children whoreached the age of 1B on or after May 312002

LLP wwwlchb.com or hfoster@lchb.corn )

lf either or both of these apply, LCHB are able tomaintain representation on behalf of the partnerand,/or children of the deceased.

Once an interest has been registerod, the claimantmusl return the signed Attorney RepresentalionAgreement and completed Questionnaire to

Lots cf sufferershave reoistered

\_-/

an initial interestin the OlassAction but have

led to followE ffiffir'sr#;+J,:",#'ff #i fr:'?il t h S U P , , ,

Birchgrove Woodland GroveOpen Day1 PM SUNDAY 23FD I\,4AY 2OO4

The Birchgrove Woodland Grove of 1200 tiees in Stratton Swincjon is now complele as the engraved oton boulder now marks the grove distinctly from the rest ofthe woodland. The Woodland Trust's informationboard in the woodland car park also clearly d stinguishes the grove. The Birchgrove produced a ,.Spec alEdition" newsletter this January which should have answered all your questions rela ng to the wood andgiven clear directions to find it. lf you haven't rece ved your copy and would like one please get ln touchwith Birchgrove at the details below

The wood is freely open to the public all year round and anybody can vlsit at any tirne. However we areholding an open day on Sunday 23rd May at 1pm at the wood. lt is intendecj that this day wll be an"official" opening of the grove and be an oppodunity for people to come togelher and nrark the occasion.It is expected that this willtake the form of afew speakers and a cutting ofa ribbon around the stone, withan oppodunity for people to talk over the afternoon if they wish.

There will also be representatives of the Wood and Trust there on the day. There s expected to be a lot ofmedia interest in the event as there was when we installed the stone. This w ll be an opportunity forpeople to ta k to the press and highlight our reasons for the woodland project ancl our many other issuesln our tves.

lf you want to attend the open day please be aware that the car parking at the wood is extremely llmitecland Birchgrove are adv sing that people contact them at the detai s below for alternative car parkingdirections for the day. Please aiso be aware that this is a wood, and there are no faci ities or visitor centreat the site.

lf you wou d like to attend the open day, receive the Woodland Special newsletter, would like to speak tothe rned a on the day, or would like io nominate anybody to say a few words on the day then please getin touch with Birchgrove.

Please remember that this wood wil be there forever and anybody can vislt at any time.

The MFT may take a sympathetic approach to assisting registrants to afford public transpod and travelarrangements tothe woodland- The B rchgrove Woodland Working Party believesthat this willbe importantto have in place to help those in genuine need of support to attend.

Details should be made known in the Easter N4FT newsletter and on the lv4FT website;App ications for support should be made on an ndividua basis - direc y to l,/FT, and The N/IFT wouldconsider any request on an individual basis if sufficient need and hardship are ev dent.

One Birchgrove reader is travelling from London on the open day on public transport. lf anybody can offera lift or would like to share the costs of trains, taxis, or even a minibus p ease contact Birchgrove for hiscontact details.

lf you are inlerested in being part of TheHaemophilia and HIV Life History Project pleasenote Sian Edward's new direct l ine is 01273644030. This prolect will enable people living withhaemophil ia and HIV to have lhetr experiencesrecorded and help complete a more accuratehistorical picture of this major social, political andmedical event that has shaped our ljves,

These recordjngs will be preserved at the NationalSound Archive al The British Library for presentand future generalions to understand the impactHIV has had on our lives. We are particularly keento hear from people living in Scotland or Northernlreland for what the experjences bave been like in'these countries.

lf you are interested please contact Sian on theabove te lephone number or emai ls.l. Edwards@brighton.ac. uk

Interviews can be up to 5 hours long and areusually conducted over a two-day sjtting at yourhome or another comfonable place.

t

Dear Bob,I see there is to be another weekend get together for us and our partners. I enjoyedSomething For The Weekend a great deal but I am worried about the choice of karaokematerial - what would it be cool to sing at SFw-Reloaded?

Maris O'Piper

Dear Maris,Well although others may think of it as 'the love that dare not speak its name' I am prepared to comeout of the spittoon and declare my admiration for Country and Western music. I find it terribleeveryone screeches through "My Way" or wails Whitney Houston's "Climb Every Woman" and sofew people doing karaoke decide to belt a Hank Wangford or Johnny Cash classic. After all the joyof C&W is that you don't have to be able to sing in tune, and as long as you mention 'Jesus','broken hearted', 'love' and 'bullocks' no one can tellthat you've forgotten the words. I'd recommendsinging one of my favourites.

"She Thinks My Tractor's Sexy" by Jim Collins or "l Like Bananas Because They Have No Bones" byHoosier Hot Shots

But bearing in mind the last weekend some of these would probably fit inta Sf'l-Reloaded betterJohnny Cash's "Ole Slew Foot". And of course there is the line for every bleeder in "Buby- dan'ttakeyour love town" in "lts hard to love a man whose legs are bent and paralysed"

"Can't Stop The Bleeding" from the band of Bob Dylan's little boy The Junkers or their other one"The Pint Of No Return" and possibly Wayne Kemp's The Alcohall of Fame,Good Singing,

Bob,

thc hlcedcn..

Dear Bob,I havejust discovered that widows continueto receive moneyfrom the Macfarlane Trustafter the haemophiliac has died if they aredisabled but not if they are able bodied.Before I bump off my new bloke whatdisability should I get in order to keep themoney coming in?

Janine from Walford

Dear Janine,Actually widows and bereaved paftners continueto receive support if they are getting DisabilityLiving Allowance so what you need to do is be Hepatitis C might be another easy option asdisabled in such away that you become entitled he isvery likely to have it but it might stop peopleto it. This is a difficult one as most disabilities offering to take you out for a drink for fearing ofare really not very good to have and all of the shoftening your lifeuseful ones (kleptomania, allergies to Happy ff vnu have aShopper baked beans, fear of chaw collection - Degenerative conditions can be okay atthe stafttins, etc) don't entitle youto DU butthere are a but they just get worse and worsefew principtes wotth knowing, question or

- And finally steer clear of the terminal illnesses- Don'tctaimto have suddenty acquired a genetic as they always end in tears conundrum that

condiilon even the Benefits Agency willspotthisSorry | cannot be of more help, wanrc answenng

- HIV might lJe the easiest and the mostenjoyable for you to get as you are akeady with Boh please write to Bobsomeone who has it but it could play havoc with (lwas going to make a joke about Alzheimer's inyour sex life after you've got rid of him there but I can't remember what it was now...) at BifChgfOVe

*-.i john@haemophilia.org,uk'

tel: OAOO Ola 6O6a

. : -----, Email: info@haemophilia.org.ukwww'haemophilia'olg.uk

1 a Information and supportBritish Liver TfustInformation, advice. support and campaigningon all aspects of liver disease including viralhepatitis (A,B,C,etc). A variety of publicationsand web based details.Britis Liver Trust, Portman House, 44 HighRingwood, Hampshire BH24 1AGTel: 01425 46308(,Fax 01425 4707OGEmail: info@britishlivertrust,org,ukwww.britishlivertrust.olg.uk

Haemophilia societylnformation, advice and support.HIV/HCV worker John lvlorris

HIV and Hepatitais.comOnline oublication about treatment.urww.hiYandhepatitis.com

MainlinersSupport, advice and information for peopleaffected by drugs, HIV and hepatitis.lef: o2O ?58,2 5434Email: linersmain@aol.comhttp://membefs.aol.com/linerrsmain

National AIDS ManualProvides up to date factual treatmentinformation via free oublications and website.lef : O2O 76.27 32OoEmail: info@nam.org.ukwww.aidsmap.com

The National Hepatitis CResource CentreInformation and advice for HCV+ people,professionals and the general public.Tel: O2o 7735 770,5Email: advice&info@hep-ccentre.comwww.hep-ccentre.co|n

Positively WomenPeer-suppod services to HIV positive womenand their children. Drugs and alcohol supportgroup and bi-monthly newsletter.Tel: O2O 7719 0�222Email: info@positivelywomen.org.ukwurw.positiYelywornen.olg.uk

Positive NationMonthly publication providing a platform for allpeople affected by HIV and AIDS in the UK.Tef: O2O 7564 2121Email: subscriptions@positivenation.co.ukwww.positivenation.co,uk

+veMonthly publication about HIV and quarterlyissues about hepatitisTel: O1895 63?878Email: andrewb@akilanet.co.ukwww.howsthat.co.uk

National HelplineNumbersl{ational AIDS HelplineTef: OSOo 5�67 12324 hour helpline offering advice on HIV/AIDS

Terrence Higgins TiustTel: O2O 7242 1O1Odays per week 12-1Opm Advice on HIV/AIDS

Positive LineTel: OSOO 1696A06staffed by positive people mon-fri 11am-1opmsavsun 4-lopm

AIDS Treatment Phone lineTef : 08.15 947 OO47treatment advice from positive peoplemon + wed 3pm-gpm tues 3pm-6pm

HIV i-BaseHIV treatment information and support.Tel: O8O8 8OO 6013 (treatment info helpline)o20 7407 A4AAEmail: admin@FBase.org.ukwww.i-Base.org.uk

lmmune Development TrustOffers a broad range of holistic therapies andadvice to HIV+ peopleTel: o20 ?7o4 1555www.idt.olg.uk

Haemophilia wales1st Floor,100 Whilchurch Road,Whitchurch,Cardiff CF14 3LYlef : O29 2o�37 7147

Birchgrove Northc/o Body Positive North West,Lawrence House,City Boad,Hulme,Greater Manchester M15 4DEEmail: birchgrovenorth@hotmail,com

t

Ghanges at tne top ol tnehaemophilia organizationsGontinuc...l\,4adin Harvey started work at the l\/lacfarlane Trusta few months ago after Ann Hithersay retired andKain Pappenheim is now leaving the Haemophil iaSociety. Karin has been Chief Executive for six yearsand has overseen a number of dramatic evenls inher time with the Sociery She has been heavilyinvolved in the long running campaign for HepatitisC compensation and was on Women's Hour onlya few weeks ago to suppod Harriet Bullock andhighlight the denia of John Beid's e20,000 to thewidows ofthose who have already dled. The movefrom plasma products to recombinant happenedin Scotland and Wales during her time and therollout has begun in England and Northern lreland.There have also been big changes in society staffduring her tin're with only Tom Bradley and SueRocks still left from when she arrived. The soc,etyhas advertised for a new person and hope toappoint soon. With both The Haemophilia Societyand the Macfarlane Trust having new people incharge, will the wind of change hil Birchgrove toowe wonder? Ed.

Sandra Singe[ fundraising and marketing assistantis aso leaving the Haen]ophilia Sociely. Those ofyou who wenl to Something ForThe Weekend willremember her as one oflhe slaff that helped ensurei t was such a success . Good luck and au fwiedersehen.

lf you would like to speak with someone personallyaffected by haemophilia and HIV at The Societyplease feel free to call Richard who is in the officeand on the sametelephone number mostTuesdaysor email richard@haemophil ia.org.uk

The Society also operates a confidential volunteertelephone support network, simpiy call 0800 0l86068 be tween gam and spm or emai ijohn@haemophil ia.org.uk and ask for a trainedvolunteer to call you back, you wili be asked a fewquestions in order to match you with a volunteerwho has the most relevant experience and avolunteer will ring you, usually within three days.

EDITORIAL TEAMMick Mason, Paul Bateman

& Robert James

IIISCTAIMERThe views expressed in each ofthe articles are

those of th€ individual authors, and not necessarilythos€ of Birchgrcve.

"BIRCHGRO\D" is published by Birchgrove Group,

PO.Box 9755Solihull

B92 9WA

THE IBUTH IS NllT NECIIIIABTEWant to have your say?Do you have questions you need answeringregarding the Hepatitis C financial recompensescheme and the lack of communication withpeople with haernophilia, or are concerned aboutthe recent news relating to VCJD, or you want toregister your thoughts regarding the recombinantroll out and the discriminatory age basis on whichit has been adopted? Maybe you may feel that alllhe above issues are equally important and wouldbe addressed by a public inquiry into the issuesof contaminated blood products ln the UK. Apublic inquiry that has so far been lgnored bygovernmenls.

Write to the Rt. Hon Dr. John Reid MP, HealthSecretary Richmond House, 79 Whitehall,London, SWlA 2NSSend a copy of your lelter to your local MPand ask him or her to answer your questionsand concems. Birchgrove would beinterested to see your satisfactory (or not)replies.

B rchgrove would l ike to thank al the peop e whohave contr buied io this news etter.

_*ourselves,ebate,l ^

t,

The Birchgrove newsletter i . funded b) rhe haemophil ia society