Demonstration on Westminster
Added: (Tue Mar 27 2001)
Pressbox (Press Release) -
261 Rowood Drive
Tel: 0121 7043519
21st March 2001
To Whom It May Concern
I am writing to inform you of an event and request coverage for same. Members of the Haemophilia community, their partners, various MP’s and several other interested parties will be demonstrating from noon on the 3rd April 2001, initially outside Richmond House, at the way the National Health Service has treated the Haemophilia Community over the past 20 years as regards to the following:
· Blood products contaminated with HIV and Hepatitis B were given to 1200 Haemophiliacs in 1983 of which 815 are already dead.
· Blood products contaminated with Hepatitis C were given to over 4100 Haemophiliacs in and around 1990.
· Blood products contaminated with vCJD were given to at least 100 Haemophiliacs in 1995/6.
· The fact that there is a safer product, Recombinant factor 8 which is genetically made with no donor blood used in its production, but unless you are 16 years of age or younger the Health Authority will not fund it resulting in a postcode lottery. (There is no age discrimination in Wales, Scotland and Ireland as all Haemophiliacs have safer synthetic Recombinant treatment in these areas)
From there we will be marching to Downing Street where various groups associated with this campaign have arranged to hand deliver letters to No. 10, this will be at 2.30pm, 2.45pm and 3.00pm. The group that I represent will be handing in a letter demanding the following for the Haemophilia Community:
· Provision of Recombinant factor 8 and safer treatments for all Haemophiliacs regardless of age or postcode.
· A public inquiry into the provision of contaminated blood products over the last 20 years.
· Financial recompense for all infections/illnesses caused by Factor 8.
I look forward to hearing from you very soon.
I watched with great interest the reports yesterday regarding the compensation that the Health Service has agreed to provide for the people infected with Hepatitis C.
However as a co-infected haemophiliac (HIV, Hepatitis B & C and 'theoretically' vCJD) I am excluded from any chance of receiving compensation. Once again the 4000+ haemophiliacs in the UK living with Hepatitis C are excluded from the population.
This situation is mirrored by the exclusion of haemophiliacs (around 100) from the compensation package offered to people affected by vCJD. The haemophilia community, who have recently been advised that they have received blood product from a donor who has died from CJD, are excluded as the Health Service consider the risk only a 'theoretical' one. It may be theoretical to the powers that be but to me it is very real and very threatening.
There are already rumblings within the haemophilia community that we could also be infected with a third hepatitis (Hep G) and are at risk from parvovirus, one has to wonder what else could be carried within the 'life saving' blood based clotting agent Factor 8. However, there is a safer alternative Recombinant Factor 8 but unless you live in Scotland, Wales or Ireland or are under 16 in this country then the National Health Service will not supply it on the grounds of cost (52p per unit as opposed to 24p per unit for blood based clotting agent).
I am currently involved in an appeals process with Solihull Health Authority to try and secure funding to receive recombinant Factor 8 and I am refusing any treatment using blood based clotting agent as I cannot comprehend infecting myself with any more viruses, this course of action is extreme and leaves me at times in excruciating pain, but I feel that I have to make a stand.
Over the past 20 years the haemophilia community have been ignored, manipulated and left to die. Personally I have experienced social exclusion, my career was cut short, I have been unable to have children and suffered extreme psychological damage from the strain of the National Health Service infecting me with a new virus/disease every decade (HepB 70's, HIV 80's, HepC 90's and vCJD 2001). I not only feel excluded by the Government from the general population of this country but I feel excluded from the human race by them. The longer the fight for compensation carries on the less haemophiliacs remain to fight and the majority are dying from illnesses relating to Hepatitis C.
The Government in Eire have already compensated the haemophiliacs in that country and held a public inquiry, why can't our Government extend the same compassion to the Haemophilia Community in the UK?
Tel:0121 704 3519/07773057774
DEMONSTRATION BY THE HAEMOPHILIA COMMUNITY ON 3RD APRIL 2001 AT WESTMINSTER TO DEMAND:
· Recombinant Factor 8 for all regardless of age or postcode
· A public inquiry into this country's blood service
· Financial recompense