If the in­quiry delves deep enough and re­veals the full scope of this ap­palling scan­dal, ex­pos­ing the be­tray­als and lies the haemophil­iac com­mu­nity have en­dured for decades, it will cause even more distress. Mean­while, day to day, I live in a state of unce

Kent Messenger Maidstone - - FRONT PAGE -

On Septem­ber 24, the first full UK-wide pub­lic in­quiry into the con­tam­i­nated blood scan­dal, chaired by Sir Brian Langstaff, opened of­fi­cially in The Church House in Lon­don. In his open­ing state­ment, the re­tired judge as­sured those present that his in­quiry will be fright­ened of no one and that those in­fected and af­fected would be placed at its heart. It was also an oc­ca­sion to re­mem­ber those who have died in­clud­ing the al­most 3,000 haemophil­i­acs in­fected by con­tam­i­nated blood prod­ucts (known as Fac­tor VIII or IX) with viruses in­clud­ing HIV/Aids, hepati­tis B and hepati­tis C. All of which have ir­re­vo­ca­bly dam­aged the health of an en­tire gen­er­a­tion of UK haemophil­i­acs who re­ceived rou­tine NHS treat­ments in the 1970s and 80s. The hun­dreds present, the be­reaved and walk­ing wounded came from across the coun­try. We met sur­viv­ing vic­tims from across Kent - Rams­gate, Whit­stable, Maid­stone and Ash­ford. That the in­quiry has taken well over 30 years to be es­tab­lished and was only con­ceded as the re­sult of Par­lia­men­tary pres­sure on Theresa May af­ter she lost her ma­jor­ity, leaves a bit­ter sweet taste. Af­ter so many decades we had ques­tions, rather than hopes or ex­pec­ta­tions. Will the in­quiry have the tenac­ity to an­swer the very sim­ple ques­tion “why?”. Will it have the courage to hold those re­spon­si­ble to ac­count? Or, as Ja­son Wade, a haemophil­iac and vic­tim of this scan­dal now buried in Mar­gate, im­plored his brother Ade days be­fore he died – “get the bas­tards who did this”. Ja­son died on Septem­ber 28, 1997 at 3.16am. He was just 28. The in­quiry, it is sug­gested, will take be­tween two to four years to reach its con­clu­sions. An­other ques­tion Sir Brian re­ferred to in his open­ing state­ments is how many of we, the pri­mary vic­tims, will be alive to see the fi­nal re­port and its rec­om­men­da­tions? Al­ready more than 70 haemophil­i­acs have died since the an­nounce­ment of this in­quiry last July. What can be ex­pected of the con­clud­ing re­port? A ques­tion I con­tem­plate with some trep­i­da­tion. If the in­quiry delves deep enough and re­veals the full scope of this ap­palling scan­dal, ex­pos­ing the be­tray­als and lies the haemophil­iac com­mu­nity have en­dured for decades, it will cause even more distress. Mean­while, day to day, I live in a state of un­cer­tainty and fear. Hepati­tis C is a blood-borne virus which at­tacks the liver caus­ing, even­tu­ally, cir­rho­sis and can­cer. Un­til Au­gust 2015 there was no ef­fec­tive treat­ment. Then new med­i­ca­tion was made avail­able se­lec­tively. If I still re­ceived my spe­cial­ist treat­ment at our lo­cal hospi­tal, I would not have had ac­cess to the new drugs. Hav­ing pre­vi­ously felt obliged to trans­fer my care to Lon­don, my hepati­tis C was erad­i­cated af­ter a three-month course of anti-vi­ral drugs. But af­ter been in­fected through con­tam­i­nated Fac­tor VIII, al­most cer­tainly on mul­ti­ple oc­ca­sions and decades ago, the com­pli­ca­tions for my health are con­sid­er­able and life-long. At the end of the treat­ment, liver can­cer was di­ag­nosed. Although it was suc­cess­fully treated, I now live un­der the shadow of it re­turn­ing and then fac­ing the prospect of a trans­plant. One con­se­quence of cir­rho­sis is por­tal hy­per­ten­sion which causes mas­sive in­ter­nal bleed­ing and for a haemophil­iac, re­sults in vom­it­ing co­pi­ous amounts of blood. On the last oc­ca­sion in June af­ter a fort­night as an in-pa­tient at Mar­gate’s QEQM Hospi­tal, I al­most be­came part of the statis­tic of those who haven’t lived to see the open­ing of the in­quiry. One of the rare side ef­fects of the new anti-vi­rals is neu­ral sen­sory hear­ing loss. I am now slowly and ir­re­vo­ca­bly los­ing my hear­ing and due to por­tal hy­per­ten­sion I have been suf­fer­ing from se­vere anaemia. We made it to Lon­don on Septem­ber 24 to lis­ten to the two open­ing state­ments. My wife of 40 years has been with me ev­ery step of the way. We have been ac­tive cam­paign­ers since 2015. Be­cause of my health care prob­lems, we have been un­able to par­tic­i­pate in the run up to the open­ing of the in­quiry as planned. We missed im­por­tant meet­ings and could not re­main for the sec­ond and third day to hear all the open­ing state­ments. It has been an­nounced that the hear­ings will re­sume on April 30, 2019. The one con­so­la­tion with this fur­ther de­lay is I can hope to have re­cov­ered enough health and strength to par­tic­i­pate fully. We have to be­lieve that I will still be amongst the sur­vivors, along with Ja­son’s brother Ade, and oth­ers in the in­fected com­mu­nity from across the county, many of whom we have never met. And that we will still be there when a brother’s prom­ise is fi­nally kept.

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