Opinion

Resistance as usual

On this past Tuesday something quite remarkable happened. Respected MP and former Health Secretary, Andy Burnham, stood in The House of Commons and alleged there has been "an orchestrated campaign to prevent the truth being told" about the contaminated blood scandal. He went on to present evidence of:

• testing without consent
• failure to notify patients of test results
• ignored warnings of the dangers of contaminated blood products
• evidence of deliberate use of blood products on individuals to establish just how infectious these treatments were

Numerous times he used the phrase 'criminal acts' and admitted he finally 'got it', the scale of it, the nature of the contaminated blood scandal, and that the only way the truth can be reached is by an inquiry. 

He went on to challenge the Government to instigate a Hillsborough style inquiry panel so that the truth can finally be established, and if they do not, he pledged to take his evidence to the police so that a criminal investigation can be begun. 

For a short time campaigners let out a collective sigh of relief. This is it, this our time. We will be vindicated, we are not mad, this stuff did actually happen and it will be resolved. Andy Burnham gets it, everyone will follow suit now, how can they not?

That relief lasted until lunchtime Wednesday. 

At Prime Minister's Question Time, the Prime Minister was asked directly, would she join with Labour and the SNP and issue a manifesto pledge to hold a Hillsborough style inquiry into contaminated blood. A simple question, and in the light of Andy Burnham's speech, surely an obvious answer. The Prime Minister did not answer this question. She instead chose to read a near identical statement to that given by Nicola Blackwood the previous day in response to Andy Burnham's speech. A statement campaigners know to be so full of holes it borders on fiction. At least Ms Blackwood had the decency to look uncomfortable as she spoke on an issue that is not even her ministerial responsibility. 

Meanwhile in Scotland they had an inquiry, co-infected individuals are starting to receive payments that will give them financial piece of mind, their widows and bereaved families are acknowledged and are also receiving financial support. Discretionary budgets are being increased so that as many of those affected by contaminated blood can benefit from it as possible. The Scottish scheme is not perfect, many are still not supported, but it is moving in the right direction. In Wales they have agreed to keep regular payment increases that the English were supposed to get, but now won't. Even the Haemophilia Society has acknowledged and apologised for mistakes it made in the 1980s during the height of the contaminated blood crisis.

Even Iran had hearings and held officials to account!

Does that not seem odd? That a country we like to cite as having poor human rights records, allegedly harbours extremists and that we believe should not have nuclear weapons, does investigate how its citizens were infected by contaminated blood, but our fair and democratic country does not? Surely when a former high ranking Government Minister and respected MP produces compelling evidence of wrong doing in the House of Commons, it should be sufficient to trigger some sort of investigation. 

At the last election many campaigners will have voted Conservative on the basis of David Cameron's promise to 'do more'. As we race towards another election David Cameron's promise is in utter tatters, the current Prime Minister is ignoring questions and health ministers are repeating the same statements over and over again in the hope that we eventually agree with them. This situation is sadly all too familar to us. We know the evidence is there, we have supportive MPs, we can see other countries doing the right thing, but we are met with resistance from the Government of the day to the point of contempt. But maybe, just maybe, this time its different. The media coverage isn't over and there is a new generation of campaigners taking up the baton. This isn't a last ditch effort, it's another beginning.

Questions that need answering

Almost immediately after the consultation document and its accompanying proposals were published they were met with dismay and anger by the contaminated blood community. It was not in any form the improvement on support that had been expected, but to then actually realise that if implemented the proposals would leave those co-infected with HIV/AIDS and hepatitis C worse off was an utter shock that many are still trying to come to terms with. 

As if to rub salt into the wound within days the Scottish Government approved recommendations for their contaminated blood vicitms that those of us south of the border can at this time only dream of. Many are now asking what was the point of the last two years of compaigning if this is the result? Some important questions now need answering.

To what end was the information provided to Jane Ellison and Alistair Burt used?

Over the last two years Jane Ellison, and Alistar Burt in particular from a co-infected constituent, have been receiving information about our concerns and have had indepth contact with past MFT trustees who will have given a complete picture of just what the MFT does, what is paid out and how things need to change. It appears that none of that information has been used or referenced for the proposals in a way that is positive for the co-infected community who live with HIV/AIDS and hepatitis C.

Further to this there was the YouGov survey of last year which gave a comprehensive view of what the community saw as improved support and before Christmas there was a meeting of campaigners, instigated by the DH, with the puported aim of informing the consultation process. Again, the outcomes of this survey and the meeting appear to have been ignored or dismissed in the creation of the proposals.  

Take into account the many hundreds of letters and surgery meetings with MPs, who have in turn written to Jane Ellison, and the information passed on by the APPG on Haemophilia and Contaminated Blood there is no excuse for how these proposals have come into being if the Government are indeed committed to 'doing more'. 

Was Ellison subject to pressure in the same vain as asserted by Iain Duncan Smith?

Just recently Work and Pensions Minister Iain Duncan Smith resigned from his post citing undue pressure on his department from the Treasury to make cuts to welfare payments that he felt were unjust. Was Jane Ellison subject to the same pressure? Is this why the proposals are so shockingly poor? Is the real barrier to the contaminated blood community receiving improved levels of support the Treasury and the relentless pursuit of cuts? In which case was the past two years campaigning all for nothing and it was never possible or the intent to actually improve support?

How can Scotland arrive at such radically different figures?

The Scottish approach has been one of commonsense and respect. They haven't danced around surveys or consultations or promised millions only to then subject those funds to a spending review. Scotland had the simple idea to get all stakeholders in a room and thrash out a deal. The figures Scotland are now implementing were not pulled out of thin air, as it appears has been the case in Westminister, but were a group decision that recognised that above all financial security was the least that was needed to give contaminated blood victims for the future. Our Government is asking if we want our support cut. Under what circumstances did they think this set of proposals would be found acceptable?

If this is indeed the case that the Treasury are restricting funds then it is little wonder UK proposals bare no resembalance to the Scottish scheme which is now being implemented. The Scottish figures were well known before the UK proposal was sent out, so again the DH must have forseen that their proposals would be met with anger and derision here in England when there is such a gulf between the two schemes. 

The proposals we are being asked to comment on here in England are possible by only ways; by incompetence or by design. Having witnessed what this Government is willing to subject the poor, vulnerable and disabled to then on balance the assumption must be that these proposals must be entirely deliberate. 

Why a wife or partner would not receive PREP

A recent article on the BBC news website has told how NHS England has now decided to not roll out Pre Exposure Prophylaxis (PREP) HIV treatment to those who are vulnerable to being infected with HIV. In short NHS England have passed the decison as to whether it is available to local authorities as under health regualtions 'preventative medicine' is not part of NHS Englands remit. 

So what does that have to do with us? 

In the BBC article there is this sentence:

Prep (pre-exposure prophylaxis) is intended for healthy people who are at high risk of getting HIV. This would include, for example, men who have sex with multiple male partners without using condoms.

Would a partner of a co-infected haemophiliac fall into this group of people vulnerable to HIV infection? All things being equal, yes they should. But the recent Constultation Proposal gives a near confirmation that this would not be the case. 

Under the current system should someone become infected with HIV from sex with their partner they then automatically become eligible for payments from the MacFarlane Trust as a 'secondary infectee' or 'infected intimate'. If the new proposals go ahead this would stop. In chapter 3 of the proposal document it says this:

3.9 Information on prevention of onward transmission of HIV and hepatitis C is now widely available. While people infected through historic treatment with NHS-supplied blood or blood products could not have prevented their own infections, they have individual responsibility for ensuring that they take steps to prevent onward transmission. 

3.10 We therefore propose that people who are newly infected with either HIV or hepatitis C by an infected person after the start date of a reformed scheme would not automatically be eligible for financial support. We anticipate that such an application would need to be considered by a clinical expert. An application would need to include evidence that the person who likely infected the applicant was unaware of their own infection status at the time the subsequent infection took place. We anticipate that this change would not apply to anyone who has already been infected by another directly-infected person. 

So to our community the Government are basically saying you are responsible for you own safety and are removing financial support should the worst happen, and yet are making available drugs which could be argued absolves others of such responsibility. 

Under these circumstances why would our wives and partners be eligible for PREP? They wouldn't.

Anyone would think the Government has it in for us.

BBC article in full

NHS England Update on PREP 

The whole truth and nothing but the truth?

I was under the impression that an inquiry was a means in which a 'truth' could be established. An unbiased gathering of evidence, testimony and facts which would set out what happened, why it happened, who was involved and what should be done to put right any wrong, if that is what is required. The Penrose report did indeed do that. To a point. But there remains the mystery of the warning letters, who got them and why.

103 warnings letters were sent, a process by which those due for significant criticism can respond before the final publication of a report, but we do not know who they were sent to, what they contained and most importantly what the response was to the letters. If an inquiry is to seek out a 'truth' should this not also be in the public domain? Is it not part of the process to know what those warnings letters contained, what the responses were? 

Lets pretend Lord Penrose wrote to the DoH and said:

"My initial findings strongly suggest that importing factor concentrate was a grievous error, one which could have been avoided and as such the DoH is liable for the infection of haemophiliacs with HIV and Hep C" 

The Doh write back and say:

"At the time we believed there was insufficient evidence to conclusively establish a link between factor concentrates and HIV infection in haemophiliacs. We acted on the information available and in the best interests of patients to whom factor concentrate was a life saving treatment"

Why does that need to be kept confidential? If Lord Penrose had legitimate criticisms of any individual or organisation, and they have given a legitimate and honest response, then is that not all part of the inquiry process which should be in the public domain? 

In recent weeks campaigners have been trying to find out to whom those 103 letters were sent, but apparently that information is held under the Data Protection Act and cannot be released. 

In processes such as this, no matter how diligent the process or sincere the aims, as soon as any element is deemed private or confidential it casts serious doubt that what is reported is the full story. 

HIV? So, you're all ok now then, right?

I'm always a bit pissed off when news stories show that "HIV is now a treatable, chronic illness - a bit like diabetes". Why? Surely that's good news, I hear you shout. Sure it is... and if it's true for the majority of newly-infected people then I am genuinely pleased for them.

It's certainly true that some of the newer ART drugs are easier to take than they were years ago, and that there are so many more to choose from. This means that, in theory, it should be easier to find a combination that suits you - i.e. that your strain of virus is not resistant to, that is tolerable in terms of side-effects, and that is easy to adhere to taking. Great! Jog on with your newly acquired virus... pay it no attention other than to pop a couple of pills morning and night. Easy peasy... what are you complaining about?

I'm not newly infected, but I can imagine that for some, it doesn't quite work out that way. The virus by now has been exposed to so many ART drugs that it is multiply-resistant. Is it any easier now to find a drug that works, than it was say 20 years ago? I expect not. True there are genotype resistance tests which will point you in the right direction, but your options are still limited... perhaps to the point of not being able to find something tolerable enough to just 'get on with it'.

Will you take the red pill, or the blue pill? Both please, it's combination therapy, you know!

Also, newly infected or not, there are no drugs to deal with the social aspects of being HIV+. Imagine this scenario: you arrive at the pub to meet your girlfriend and a few mates, who know you've not been feeling great and have been to have it checked out. It turns out you're diabetic and need to be treated with regular insulin. It's a bit of a shock to you and to them... everyone's pretty sympathetic but relieved that you're on the right treatment. 'I couldn't do those injections every day,' someone might say. 'No more cake for you then,' jokes your girlfriend. And you move on as best you can with their support.

Now switch that diagnosis to HIV. Play it through in your mind, and gauge those reactions. Yeah... I know.

'Oh, stigma is nothing like it was in the 1980s,' we hear. Perhaps. We don't have the falling gravestones commercials any more, that's true. But have social attitudes aside from the media really changed towards HIV? The problem is that HIV is a virus that generally arrives one of two ways: either through sex or through drugs, and that's why the stigma barrier will never be broken. Let's face it, there's nothing really unusual about HIV as a virus... it doesn't make your appearance change greatly, you don't grow a second head or ooze with pus or anything else that might make people recoil. It makes you ill, as do many other diseases or conditions, but HIV is different. STIs are different. Anything that hints at drug use is different. For an overtly sexualised society where sex and sexuality is pushed down every media channel available, we still don't go there privately. It's not done... your bedroom antics remain firmly behind closed doors. You. Don't. Talk. About. It.

You can be prosecuted for transmitting HIV to someone accidentally, if you didn't inform them of your status prior to taking any potentially risky activity (i.e. sharing needles or having sex, even with protection). What a head-fuck. You have a highly stigmatised virus which you are legally obliged to tell people about, or remain celibate for the rest of your life.

Think back to our pub scenario and your girlfriend. You've been with her for a while, and have been doing things that normal couples do. How do you both react to this news? The inevitable questions arise: is she infected? was she infected first? did he infect her or vice-versa? oh shit, she's not pregnant with AIDS, is she? if by the grace of God she isn't, will we ever be able to have kids? what if she's negative... will she ever want to sleep with me again? will she even want to be with me again?? So many life-changing questions. For you, for her, for everyone close to you.

The 'Mum Test'

The chances are that you wouldn't have even said anything. Your mates are there and you don't want them to know. Why? Because you don't want them to think you dirty. You don't want them to wonder how you got it. You fear their reaction. You don't want to lose your mates.

Let's do the 'Mum test'. Would you want to tell your Mum if you had cancer, diabetes, arthritis? Maybe? What about syphillis? Gonohorrea? HIV? Thought not.

There is no cure for that, and it's likely there never will be.

Having said that, being newly infected and diagnosed does have a major advantage over our community of 30+ years positive: there are great treatments available and you are unlikely to experience the actual effects of HIV infection leading to full-blown AIDS. Not so for us, most of whom have already been there, most of whom did not survive it. Those of us that remain are on the front line of HIV progression - there is nobody that has been infected with HIV longer than we have. We are the survivors of the AIDS apocalypse. Our bodies and our minds have been chewed up and spat out so many times it's become normal. We are mere shells of the people we might have been. The drugs have come and gone and in some cases killed us. For many lives have been destroyed and mental illness has taken hold. Families denied. Careers denied. Life denied.

None of this of course, for us, comes alone. Add in Hepatitis C to the mix, and you get quicker progression (of both diseases), fewer treatment options (for both diseases) and of course all the associated problems that HCV as a stand-alone virus can cause. If there is an average incubation period for HCV, we're long since past it. vCJD, anyone? Anything else while you're at it?

I truly hope that for the newly diagnosed, life continues as normally as it can. For us, that ship set sail 30 years ago.

After Penrose

So, Penrose finally arrived. The big recommendation? Drum roll….. people should get a hep c test. £12 million and 6 years to recommend something that any responsible, sexually active adult should routinely get. There is undoubtedly more to the Penrose report than that and I can't help but think that 'get a hep c test' as the headline was a misjudgement by the report's administrators and should have led with something else.

From this punter's point of view Lord Penrose already had one hand tied behind his back with his terms of reference, especially the 'not looking at compensation' aspect when it came to the expectations of our community. Did we get a bit carried away in anticipation and drama of 'warning letters' and the assumption this was going to reveal a smoking gun forcing immediate action? Yes, I think we probably did. But I'm sure there is more to Penrose than the headlines suggest and careful analysis will reveal important findings in the coming weeks. 

Its done, it's published. So lets move on, because this is what happened next…..

The Prime Minister, David Cameron, apologised in the House of Commons to the victims of contaminated blood and promised £25 million in interim funding for victims until further reforms of payment system can be introduced in the next parliament.  

This is without doubt a huge positive and David Cameron and all the supportive MPs should be applauded for this landmark in our community's history. Some have criticised the apology as being too brief and insincere, and I'll admit to be being of the opinion that an apology 30 yeas too late is no apology at all. But I found myself genuinely surprised and appreciative of the Prime Ministers words. After all he has now done what many before him refused to.

A written statement from Jane Ellison, Parliamentary Under-Secretary of State for Public Health, goes onto explain a bit more about how this interim period is going to work and sadly it doesn't sound like the MFT is going away anytime soon, so it remains to be seen how that £25 million is dispersed and what new systems are proposed. The devil is most certainly in the detail.

So what now? Is our situation today any different because of Penrose's findings? Not really. Only today we have an extra £25 million and a firm commitment by both leaders of the Conservative and Labour parities, and Scottish First Minister to introduce better support for contaminated blood victims as a priority in the next Parliament. 

Mike Dorricot: unlikely to survive long enough to see settlement

We didn't get closure today, we didn't get a just settlement, but I'm taking this as being a good day for us from which more can be achieved.

But… 

Could this have been solved today? Dealt with, if the will had been there? With months of statements and debates showing unanimous cross party agreement that this should be sorted, Archer and Penrose drawing similar conclusions that support is not sufficient, why the hold ups, the interim measures? Why not just do it?

I applaud and greatly appreciate the work, words and commitments of our politicians over the last few days but as our community looks potentially  towards another year of waiting for assessments and consultations to take place I ask our politicians to think of Mike Dorricott, a recipient of contaminated blood, who will most likely not be with us by the time this finally gets sorted. I would urge all those who have spoken and avocated for us so vigoruosly these past few months to keep going, don't let anymore time pass than is absolutley necessary. 

Is it worth speculating?

With only two days to go until the release of the Penrose report there has already been a raft of press and media stories highlighting and speculating on what may or may not be said, or supposed sums of money that could made available to those affected. One publication suggested as much as £3.5 billion could be on the table.

If there is one thing we have learnt over these many years in dealing with Westminster and the Department of Health is that nothing is certain and speculating on what Government may or may not do before they actually do it will more often lead to disappointment. 

With only two days to go throwing around figures and what may or should happen is at most going to get people's hopes up and perhaps worse see them dashed once again. Now, more than at any other time in this campaign, is it not vital that we wait until we see the Penrose Report in black and white and have an official response from Government? Will we only then know the true position from which to press forward?

Living stories - an oral history of HIV and Haemophilia

For those that don't know, in 2004 the Living Stories project about HIV and Haemophilia was undertaken by a team at Brighton University and funded by the Heritage Lottery Fund to record interviews about the history and lives of those living with the conditions. A little later, in 2007, another part of the project based upon the interviews of the families of those infected was completed. In all, more than 60 people contributed to the project, the audio files and transcripts of which are housed in the British Library.

Birchgrove originally covered this project in its 2005 Spring newsletter, where you can read about the details of the project and some testimonials from people who took part.

Whilst the original Living Stories project is now more than 10 years old, it still holds relevance today as a near perfect encapsulation of a point in time in the journey we, as HIV+ Haemophiliacs, continue to make. It's worth looking back to remind ourselves of the stories themselves, put at the time the recordings were made... to recognise that not all the contributors are still with us, and to honour their contribution to this harrowing piece of history.

Some audio snippets from a selection of interviewees are available at the Living Stories website.

For the entire project, you'll need to visit the British Library, where you will be able to listen to the audio archives and read the transcripts. To find their listings on the web, visit the Haemophilia and HIV Life History Project and the HIV in the Family: an oral history of parents, partners and children of those with haemophilia and HIV pages on the British Library website.

Our place in the world

Let me ask you a question: what is a successful life?

Or, to put it another way, what do you have to have achieved in your life, by the time you kick the proverbial bucket, in order to fulfil the general perception of success? Climb a mountain? Raise a family? Invent something that changes the world? Raise millions for charity?

To survive long enough to call it a life?

Is it enough to fight all the battles we face every day as HIV+ haemophiliacs, and wake up the next morning? Should we be satisfied with that? And if not, is it possible to achieve more?

Those few of us who are still here have now been alive with HIV et al for more than 30 years. We are at the forefront of aging with these infections, and have been struggling along, dealing with the unknowns as they appear, for such a long time that we know nothing else.

I'm approaching 40, so have lived like this for all my life as far back as I can remember. It may be because I'm approaching mid-life crisis age, or because of the uncertainty about all of our financial futures (the Penrose juggernaut has no steering wheel, and nobody knows where it's heading), but lately these questions have weighed heavily on my mind.

I'm very fortunate, in that I have a family who light up my life beyond measure. My wife somehow copes with me and manages to love me through it all (I suspect she may be clinically insane / a superhero). We've been through the horrors of assisted conception and have brought our wonderful kids into the world. These are all incredible achievements, if you ask another HIV+ haemophiliac.

Ask the man on the street, however, and you'll get a blank stare in return. These things are normal, unremarkable, not worth a second thought. It's just what you do... and it doesn't much matter how you got there. The result is the same - that's your achievement. I'm also starkly aware how lucky I am. Of the few of us left alive I suspect not many are as fortunate as myself.

It's also almost impossible to not compare oneself to those around us. We all know someone who has forged ahead with their 'plan' unhindered, and have fulfilled their life's ambition. They have achieved their potential - be that to run a successful business, become a philanthropist, change something for the better. Of course, some have that potential but choose not to use it. From the perspective of those who have had that potential removed from them, this is an unforgivable waste of human life.

So is it enough to have a life and only survive? Some of those I've spoken to feel it isn't enough. It's not enough to have achieved a lot in the context of being a multiply-infected haemophiliac within the parameters of disability and illness. It can only be enough when we have achieved some thing more than those without these afflictions would call 'normal'. It has to be extraordinary not in the context of our small community, but in the context of the world.

So it may not even be a question of forging an existence for ourselves through our own merits, where we can, instead of state-funded pity payments... but the wider question about how we only have one life to live: what are we going to leave behind after all is said and done?

Will we eventually reach the pearly gates (if you believe in that sort of thing) with nothing to show for it other than to have survived, or is there even a small possibility that we could leave our mark on the world, have made it a better place through our own actions and deeds? If that's even possible, are we constrained by the HIV and haemophilia so much that any achievement we might make is inevitably tied to that? Are we no more than a collection of disorders and viruses?

It's starting to seem that we're always beginning from a position that's so far behind your average 'normal', if you like, that we can only ever expect to play catch-up to that point. In the end it's all about potential, and ours isn't what it once was.

It might be that part of it is just in our heads. As men (which most of us are) society still expects us to be vital, strong, protective, providers who should strive to be the best of the best. The conditions we live with have taken that away from us. Instead we are patients... people living with illness and disability... weak and unable to be the best at anything. In our minds, at least, it has made us the one thing that all men fear to be: inadequate.

Is this why we now feel the need to be more than our potential might allow? Perhaps that's what drives the soldier returning home from war with the loss of a limb to try to become a paralympian, or climb a mountain, or drive a rally car. That fighting for your country and surviving potentially mortal injury isn't enough. That you have to achieve great things in spite of this.

We're not soldiers, though, and our injuries are neither visible nor honoured. To the outsider looking in, our battle has never existed. Though we are injured, in many cases mortally, we can't let those around us know, nor would they understand if we did. Perhaps it is because of this stealth in suffering that we feel the need to become extraordinary and leave that mark on the world.

What's becoming more clear is that we don't want to have survived this far, against all odds, just for the sake of it. We feel like there needs to have been a purpose for it. The problem is, we don't have the first clue how, or if, that can ever happen.