Common Wrong HCV and HBV Understandings in Parliamentary Policy Makers

Common Wrong HCV and HBV Understandings in Parliamentary Policy Makers

Over 12 years of running the All Party Parliamentary Group Secretariat on Hepatitis from 2004 until 2009 and also attending large numbers of meetings, doing Parliamentary Briefings, doing Seminars aimed at Policy Makers with Chief Whips helping and asking questions of Health Ministers, Lords and on the floor of the Commons related to Hepatitis B and C.

A great deal of ignorance has constantly been witnessed among our politicians, all of whom have to rely on information from the very agency responsible for hiding its Hepatitis Infections and Mistakes. We detail these misunderstandings below

Our Reply to the 2008 Parliamentary Debate on the Liver

sums up many of the ongoing falsehoods slowing Hepatitis B and C care in the UK.

In the interests of fairness and greatly desiring to simply educate, we have drawn up a list of the completely or partly incorrect statements uttered or accepted by politicians for years. The purpose is not to lay blame anywhere but on the Spin/PR/Common Misconceptions that are at the root of each of your Hepatitis B and C statements. Our politicians like our public and doctors are victims of clever false information, mainly the expert lies in the NHS Hepatitis Documents. MP statements are in bold. To date 9 years later these misunderstandings prevail.

“Collected from US prisons” Brian Iddon MP

Wrong Understanding! Maybe 1-3% of our blood products transfusion epidemic came from the US. But UK prison blood use was responsible for 60% of all HCV infections transfusion/major surgery until 1986. That’s 5000+ annual NHS infections, hundreds of hospitals got blood from lots of UK prisons. The practice took 2 years to stop even with the HIV AIDS panic. The NHS has already admitted the bulk of our infections come from the period of UK prison blood use.

“80% of HCV is contracted from drug use” Brian Iddon MP

Wrong Understanding! This figure is drawn from an admitted route of infection survey in 1996. The survey was carried out between 1992 and 1996, the test venue was mainly drug and sex clinics, of 6,000 or so diagnosed, 80% of HCVwas drug related. However in 1996 the NHS also admitted 20,000-30,000 non a or non b and transfusion hepatitis patients on file, it admitted 14,000 blood infections 82-92, 5,000 product infections, a 20,000 plus dialysis disaster. The real figure for infection in 1995 was 500,000*. That’s 300,000 more than street injecting can give us. Globally, we must remember one in 35 humans on Earth have got HCV from a health route featuring Contaminated Blood. Street injecting is about 20% of infections, prison care is 20%, overseas healthcare is 35% and UK healthcare is 25%. 20% not 80%, that’s why 80% of our epidemic 400,000 people are undiagnosed and have stayed undiagnosed. The House and the All Party Hepatitis Group must recognise the reality of this.

“On viral hepatitis, hepatitis b and c are relatively uncommon, with less than 0.5% infected” Ivan Lewis MP

Wrong Understanding! Outrageous nonsense, this is the 0.33% guess of 231,000 for HCV and HBV guessed at 0.17% a guess at 165,000. You can’t halve the epidemic anymore. You simply can’t pretend 450,000 people with a deadly virus aren’t there anymore. The blood sera for HCV said 1.07% in 85 down to 0.93% in 95. That’s 580,000 down to 510,000 HCV infected in 1995, then we’ve allowed a tattoo boom, an unchecked migration at 2-4% infected, and booming prison infections. The fact is nearer 1.5% have Hepatitis B and C. At least 420,000 hbv and 550,000 hcv have been infected period Ivan. We must all learn this fact people have died faster for 20 years because of gross underestimating.

“HCV Transfusion during childbirth was rare” Brian Iddon MP

Wrong Understanding! For the sake of c-section mums all 400,000 of whom are at risk, we need to mention immune d globin at this point. This product has infected more c-section mums than factor 8 has haemophiliacs.* OK the transfusion was a one in 38 risk until 86 for a c-section mum, but the immune d is a pooled plasma product ie one infected batch infects 800 or so mums and this is administered both before and sometimes after surgery. 3 mothers wanted to speak to Archer, Anita we know cannot. So we must. An expected several thousand HCV infections have occurred.

“None of them (Hepatitis Policies) reduce it dramatically” Sandra Gidley MP.

Sandra arranged an MP's briefing for us. Sadly the few we trained rapidly move on to other jobs, rather like Health Ministers by the time you get them saying what you want they have left the House and taken other jobs. Rather like the excellent Mr Burnham.

Wrong Understanding! Since 1999 testing has halved deaths in the US. A simple poster, plus the kit, would find 200,000 people in three years. People are quite rightly horrified when they realise that they and their loved ones lives are in danger. They queue up fast when they realise their lives depend on it and their major surgery, dialysis, organs, blood products, blood was highly infectious up until 1993 and should have been screened then. The dramatic effect of know your risks get tested is always far higher diagnosis levels, in over 30 developed countries. It is combined with border testing and universal child vaccination for HBV, it is a stunning global dramatic response.

“Such Viruses are fairly new” Brian Iddon MP

Wrong Understanding! It’s our oldest documented Super bug. From 1919 Transfusion hepatitis affected patients, especially soldiers.* There are NHS strategy documents for transfusion hepatitis or non a non b dating to the war. After 1958 with a million units used blood technology, doctors noted a UK 0.5% to 1% of patients got transfusion hepatitis.* The response of the Blood Bank in Court in 1993 was to contend that this published risk was so well known that no-one needed compensation. The Blood Bank declared in Court the known risks. They are documented at 2.6% of transfusions or about 160,000 patients between 1970-1990. In 1972 when hbv was isolated, hcv was called nona nonb and known to contaminate the blood supply. 2-3000 people got diagnosed annually from 1973-89. In 1989 hcv got a new name, but 250,000 people got non a non b from the nhs, and the 30,000 diagnosed still havn’t been systematically screened even. For simply decades doctors have noted non a non b or persistently high ALTs and warned patients to liver protect. This was common until 1989. The Non a non b 70’s and 80’s strategy meetings were the files destroyed out of Dr Owen’s Box.

“It is better to test now it is easier to treat them” Brian Iddon MP

Wrong Understanding! The key paradigm, is to warn and diagnose patients. Those evidencing liver damage do tend to be the bulk of the interferon attempters. Uptake in this group is often delayed 1-10 years at patient request. However 100% benefit from diagnosis and being warned, which is the beginning and end of treatment for many of the infected currently. Get Tested, This why the WHO epidemic classified the virus a lookback superbug in 1999. This is why the rest of the world diagnosed and warned their patients in the early nineties. They had no treatment to offer but knew and have proved warnings halve fatalities.

People don’t die of hcv they die precisely due to long term non diagnosis. The treatment that is being used across the world is to diagnose and warn patients. The same treatment we were better at in the seventies and eighties.

“13,000 people died from liver conditions.” Sandra Gidley MP

Wrong Understanding! Only British MP’s, approach this debate without knowing the hcv hbv death tolls.

Since 1999 when the WHO death certified hcv, only the nhs have forgotten to note how many of the guessed 5000 deaths annually with hcv, are from hcv. Everywhere the record is kept the boom in hcc primary liver cancer correlates to an undiagnosed hcv epidemic, Australia 20 years ahead of us noted one in 20 of its hcv patients died of liver cancer in 12 years 94-06. The point is that 1000-2000 deaths because of hcv is what the growth in each type of cancer and each type of liver failure death points to in our uk records. We are drinking 13% more alcohol but dying twice as fast, we are told in the Inaction Plan of 02 about 100 hcv deaths a year. But with a death certificate 1500 annual deaths per 500,000 undiagnosed infections is the norm. This clearly shows up in our study of deaths from hcc, icc cancer of the bile ducts, liver failure, drug re action, alcohol deaths all inexplicably doubling. If you cover up the infections it’s helps to cover up the deaths, PR wise. It also destroys a desire to save lives. Until MP’s are allowed to realise the healthcare and other groups death toll, no-one can do anything. Imagine Ann Cryer MP has lost a partner, hcv is responsible for up to 50% of such deaths, yet he wasn’t tested, a basic epidemic precaution in any other developed country.

“They are readily transmitted.”

Completely Wrong, Wrong Understanding! Hbv is readily transmitted among children like chicken pox. However, to mention hcv in the same breath, it takes 400 life years on average to get hcv from an infected family co-habitor. The only proven route is transfusion, it is important to know hcv is from prisons, surgery, dialysis, reused shared syringes, overseas inoculations, tattoos and blood spills. It is something you’d expect from a fight but never a diagnosed partner, there is no medical evidence at all for c-sex so to speak. This is important people with hcv readily die younger often, but they rarely infect others, hcv diagnosed and people in general never swap blood, do we? HCV Patients have become mentally ill and commited suicide when told readily transmitted like hiv or hbv.

“Consultants report that immigration brings in hbv and hcv.”

Wrong Understanding! You have to know the numbers……Our consultants and the consultants overseas are already telling us that 250,000 mainly inherited cases of hbv and 200,000 mainly healthcare cases of hcv are here right now in 2017. 81% of Hepatitis patients in Liver Units are migrants according to CUSHI B. Without their risk posters or kits, they are upward trend dying right now. These numbers give us with UK infections 500,000 hcv and 450,000 hbv having deadly viral hepatitis. That’s why our Charity is registered and published the Rising Curve? That’s the WHO UK deadly hepatitis prevalence. Up to 15,000 people a year migrate in with silent mainly healthcare hepatitis, to a place that uses the hcv test or the hbv vaccine almost not at all.

“Preventable Hepatitis” Sandra Gidley MP

“Liver disease is almost entirely preventable.” Ivan Lewis MP

Wrong Understanding! This completely misses the point that 300,000 people have healthcare hcv and 160,000 have arrived in the last decade with inherited silent hbv. Very, very few of the people on the planet with long term hepatitis could have avoided it and huge numbers of the people in the UK with hcv could have avoided it. Perhaps some injectors could be helped to avoid injecting and definitely a high number of health workers and the tattoo/beauty industry, can learn 2001 precautions, school/work/home blood spills as well, have no blood hygiene message. People can abstain from sex to avoid hiv, but hundreds of thousands of people cannot avoid hospitals or prisons. “Preventable” is a synonym for “the patients fault” money on such causes is not spent. The 200 million and rising healthcare hcv infections are there, just like our 250,000 mainly healthcare infections. The US went from 150,000 infections a year to 20,000 with Blood screening in 1992, that’s the prevention happening then they prevented half the deaths by diagnosing half their patients. 19 out of 20 hcv patients die without infecting someone, it takes 400 years on average. However 15,000 new healthcare infections arrive a year untested, the prisons create and release a thousand or so more untested, our tattoo industry is a? a year and our hospitals on the organs we forget to test still and vial outbreaks are reported everywhere in the world except here – no kits. Due to the Titanic Information Shortfalls above, consistently incorrect strategies are advocated. Prevention, Transplants are mentioned, but the things that halve deaths testing posters, disease maps and awareness are forgotten.

“First, we want a world class plan for using interferon and anti virals. Second, a good practice model for administering it. Third, incentive driven GP’s to find more interferon users and watch them on interferon with a cancer referral model. Fourth An Audit of GP’s to see if they can spot hcv.” Brian Iddon MP

Wrong Understanding! This sounds like the CEO for Interferon wrote it, not a doctor,policy maker or patient. Truly, Anita is dead, I feel like I’m dying, but neither of us were warned for 20 years, we just needed to be diagnosed and warned. We are already spending 550 million on anti virals, but they cannot cure a delayed diagnosis presenting with cirrhosis.

The point is the testing campaign is a £3 a test project that gets 50% diagnosis levels and halves the death rate. No GP spots hcv without it, and the GP’s learn what to do about hep c from it. We know the audit, our GP’s have missed 90% of their hcv infected patients routinely for 20 years. They learn what to do to, to diagnose and warn if you give them their Poster Map Counselling Rodel and Risk Proforma, simple basic epidemic healthcare tools, plus the critical admission the infections are there to be found..

“she now has a problem” Sandra Gidley MP

Wrong Understanding! The lack of diagnosis is the problem! The people who die of hepatitis c, the ones who get cancer in particular, are like this lady, they die completely by accident, doing a recommended 21 units. Even worse are the prescription deaths, 6% of A&E admissions are drug re actions. The bulk of the deaths and liver damage is ended with diagnosis. At least 200,000 people will liver damage like this, tens of thousands will die, are budgeted to die, in this accidental way. This is the problem – non diagnosis…. I’d like to take Brian’s the brilliant pawn to king four of hepatitis c and alcohol don’t mix to the checkmate of “Our failure to test has left tens of thousands of Anita Roddick’s dying from a recommended 21 Units, a Prescription, even the already diagnosed nona nonb ones.”

“transplants and budgets are needed” Micheal Penning MP

Wrong Understanding! We are counting the cost of delayed diagnosis and planning for more! We are talking transplants without mentioning transplants were and still sometimes are HCV infectious! The thousands infected from nhs transplants need a mention here, mainly kidney, thousands used a year, and eyes, livers, skin bone marrow and hearts hundreds are used a year. The Canadians budget every $ on testing saves 10 in interferon and 50 in transplants. Even Anita couldn’t get a transplant.

“HCV carries a significant stigma” Ivan Lewis MP

Wrong Understanding! Everywhere else in the world it carries a significant sympathy factor because it is a Super bug, also a forget about it factor because it is not a sex disease. The Epidemic has been given a stigma here, mainly by the NHS with its 90% Addicts attitude. Even though the bulk of the infections are healthcare no one realises. In the US it’s a veteran’s bug, Europe a hospital outbreak, Egypt a mosquito vaccine outbreak that infected one in twenty, here only here, it has become a sort of junkie aids for dirty people.

The way we communicate messages is crucial. If we are seen as a group of bland politicians lecturing the general public about what is good for them, we will not necessarily change behaviour. It is incredibly important for the Government to provide leadership on public health and health education, but the way in which we communicate has to be sophisticated and based on evidence of what works, and it has to be segmented to reach different groups. Ivan Lewis MP Department Health

This all sounds like an ad agency, PR company sales CEO wrote it. If we substitute……….. “Incredibly important we can notice how normal healthcare diagnosed 50-70% of its HCV super bug epidemic years ago.” We are talking sense. We’re still not seeing this epidemic all around us in the UK right now in 2017 with NHS venues at 3% infected, never mind communicating, we seem unable to see, think or learn for 30 years on this issue. The lies about hcv infections and deaths, the fear of communicating the 250,000 nhs infections has been very sophisticated PR, the way of explaining them the same very sophisticated and government led Spin Doctor Master piece. But Smoking Kills and Safe Sex and Know your risks Get tested are incredibly simple Ivan. There are no segments to straplines. We do not need the govt to nag us with healthcare thought leadership, but we had a right to education about hcv nhs risks, we need just the facts, the truth about our blood being contaminated. The face it and what not to share campaign disasters are such segmented leadership. 20% of infections, the injectors and hiv positive gay men have had 95% of the attention. Millions of innocent hbv and hcv people at risk from here and overseas, have been left without a “you should get tested” communication for 3 decades and left with a communication that makes them feel like criminals.

A substantial program of work is going on. Ivan Lewis MP

Wrong Understanding! The UK has tested poorly since 1990. Home Access a single test kit brand in California has sold that many kits to Californians in the same period. One office is Home Access. The output of one office from a one hundred billion a year organisation is utterly insubstantial, but that is our substantial hcv hbv responses. The most insubstantial use of the tests in the developed world has occurred for 27 years. We are under 20% diagnosed in a developed world of 50% diagnosed.

We have a range of measures to control hcv and hbv. Ivan Lewis MP

Wrong Understanding! The comprehensive range of proven measures for the hcv and hbv epidemics have been and are being ignored since 1992. The testing campaign, the disease maps, the proper prevalencing and the list of people needing testing urgently are still missing. The last sight of them was probably when they were stolen from Dr Owen’s Ministerial Box. We have not even properly admitted to millions of people “You could be infected”. We certainly have not said “You should get tested.” We are 28 years late in telling the truth – the only measure proven to diagnose. The only one we needed. The hcv test is the measure to control HCV and the HBV vaccine is the measure to control HBV and we are the EU basket case at using either.

“We seem to not even have a strategy” Sandra Gidley MP

Right Understanding! WHO has issued clear brilliant cost effective contaminated blood HCV look back testing strategies for decades. Strap line Get Tested Simple. Warning don’t die by accident simple. Warning get vaccinated. Simple. School children in many countries can tell you the strategy. The waiting time for up to 1000 patients per PCT is 28 years for a Contaminated Blood Test. There has been a pitiful percentage improvement in testing yet the following You Tube is now 15 years old. see

http://www.youtube.com/watch?v=Lilar2Pcr_s&feature=related

“No awareness like HIV”

Wrong Understanding! People are highly aware given the facts. They destroyed transfusion HCV data, a simple honest “Hello one in 39 transfusions featured hcv infection” on Panorama has not not been allowed since 1993. More deadly than hiv and given to hundreds of thousands of patients, just isn’t quite clear in the UK yet is it?. At the time of writing we are producing a plan that carries the key line “a Non-alarmist campaign focussed on risk groups”. They plan no public alarm, the fact the blood was from addict prisoners and infected one in 39 patients up until 1993, is the kind of fact that creates awareness, the facts about hiv that created awareness. No alarming HCV facts = no HCV awareness.

Create your business website with

Website Builder.