Living Without HepC

So what are the implications for Week 12 (which I recently referred to in Week 8 Tuesday too)?

The National Institute for Clinical Excellence, NICE, “make recommendations on treatments and care using the best available evidence” to the Department of Health on a wide variety of medical diseases and conditions.

The NHS have accepted their recommendations in Technology Appraisal 75, Interferon alfa (pegylated and non-pegylated) and ribavirin for the treatment of chronic hepatitis C which outlines the treatment criteria, technology, need for research and other medical matters. This policy for treatment has been accepted and adopted as the standard of treatment that HCV+ people have the right to expect from the NHS.

Amongst the many things outlined in this document is the protocol for what happens at Week 12:

For people infected with HCV of genotype 1, 4, 5 or 6, initial treatment should be for12 weeks. Only people showing, at 12 weeks, a reduction in viral load to less than 1% of its level at the start of treatment (at least a 2-log reduction) should continue treatment until 48 weeks. For people in whom viral load at 12 weeks exceeds 1% of its level at the start of treatment, treatment should be discontinued.

In other words, if my viral load has not dropped sufficiently at Week 12 my treatment could be discontinued.

The document also talks about SVR (Sustained Viral Reduction) and how the results of Week 12 indicate the outcome of the treatment:

4.1.2.5 After 12 weeks of treatment, the viral load in people who eventually have an SVR after 24 or 48 weeks – treatment is generally reduced by a factor of 100 or more. That is, for every 1000 copies of the virus in the bif lood at the beginning of treatment, there would be 10 or fewer copies at the end of 12 weeks of treatment. This is known as a 2-log reduction.

4.1.2.6 For genotypes 1, 4, 5 and 6 (together called G1+), only 70-80% have a 2-log reduction at 12 weeks and, of these, about 60% (40-50% of the total group) have an SVR. Of the 20-30% that are non-responders at 12 weeks, few (perhaps 0.5% of those originally treated) go on to have an SVR.

So, as I understand this, 20-30% of patients do not show sufficient reduction in viral load at the Week 12 stage to continue treatment.

Will I be in the 70-80% group or the 20-30% group? This is the significance of Week 12!!

I have to say I am not so worried because I remain optimistic I will be in the group who are responding to the treatment. After all, my Liver Function blood test results show that my liver functions have returned to normal – after having high ALT’s for the past two and half years (probably longer but they weren’t being monitored before that!). So there is evidence that the medications have kicked in sufficiently to stop the attack on my liver and its functions have returned to normal.

But I as I write this I am aware of how much, like other HepC+ people, I have become an ‘amateur expert’ on Hepatitis C.

I support this notion in one respect. Knowledge is power. Understanding the medical information “empowers” me to take responsibility for my health and my treatment. I believe it is important to take “ownership” of my situation as I have said previously.

On the other hand, there reaches a point where I think I want to keep it simple. I don’t understand much about viral loads. I do know there are several ways of measuring them – the Americans have a different standard than the UK. I don’t understand about “changes to log2″. Nor do I really want to.

It reminds me of my days in secondary school Algebra classes when I used to think – what on earth am I learning about logarithms for – what will have to do with the real world? I can honestly say this is the first time since school I have needed to consider logs!

So while I track my other blood test results with interest I think I will adopt a more ‘laissez-faire’ attitude about viral load test results. I also know that the hospital I attend will first test me with a PCR test – the initial test to see if people have the virus. If that is negative, then the viral load blood test – much more expensive to carry out, will not be thought necessary.

I think my ‘laissez-faire’ attitude would disappear if the question of me not continuing treatment arose – but as I said already I am optimistic that the medications are doing their job. They ought to be – I am doing everything I can to support their work!

It does make me cross – the simultaneous presentation of Hepatitis C and injecting drugs. The media and the government make reference to both together. Lumping us all together and stigmatising all of us.

I know that HepC was originally identified in this country through injecting drug use, and that the government’s initial response was to put funds into drug projects to work with this epidemic. I know because I had to go to a Drug Project as a client to access the services of a support group. A number of my fellow group members have been injecting drug users. I don’t feel judgemental about their previous activities nor do I feel any superiority over them.

But I do feel that the current presentation of HepC and drugs simultaneously invites/suggests/affirms/corroborates the notion that HepC=injecting drugs and that those who have HepC have only themselves to blame because they chose to inject drugs. I don’t feel any of us should be blamed for having HepC whether we have been injecting drug users or not.

It does remind me of the early days of HIV when it was seen as a gay plague visited on homosexuals as retribution. Nowadays, the profile of people who are HIV+ is recognised as very different to the early days and there is not the same assumption that people deserve their illness.

I think the media and the government need to be responsible in their approach on this issue and anticipate that the profile of HepC+ people is changing already and doesn’t just comprise the injecting drug users they are focusing on. In his presentation, Sir Liam Donaldson made reference to there being a group of mid-life professionals who may be undiagnosed with HepC. I think he is right. However I thought it was unfortunate that he illustrated his reference to this group by using an image from the rock festival Woodstock and saying there may be people who experimented with drugs in their youth, become infected and still not realise. Again the reference to drugs.

Sure HepC was first noticed here in the drug injecting population but are we also noticing the number of people infected through blood products, mass injected medical treatments and immunisations using glass syringes, dental practices, needle-stick injuries to health care professionals? Are we going to continue to infer that these people too are responsible for catching HepC? And the people who have been infected through shared toothbrushes, razors, tattoo needles and all the other identified risk factors?

I suppose it could be argued this is where we need to start from and my views are somewhat ahead of where we are. But I don’t think I can stop hoping for a more balanced approach to Hepatitis C coverage.

It does happen. I noticed a breaking story today from “The Peninsula Qatar’s leading English daily” stating that 2.8% of their population is HepC+ (compared to .5% of the population in England). No mention of drugs or implication that those infected are to blame.

A more balanced approach in this country could encourage those who have been infected by ”risk factors’ other than injecting drugs to come forward. That is what the government says it wants – while continuously and simultaneously refering to Hepatitis C and drug taking in the same breath.

I suspect there are a lot of people who are ‘in denial’ about being HepC+ but I can understand this to some extent. It isn’t easy to admit to having a disease associated with the stigma and judgement that your illness is self-inflicted and deserved. It isn’t easy to take the risks with your career, your family’s social relationships, your children being discriminated against at school, your insurance questionnaires, your mortgage application, your application to professional organisations, etc.

The current climate does not make it easy for that undisclosed sector of society to come forward. So far, it has been estimated there are between 200,000 and 500,000 people in the UK who are HepC+ and undiagnosed. I suppose we could see these statistics change if infections from the other ‘risk factors’ are increasingly and more openly identified. And if we stop stigmatising those who are HepC+.

In the clinic waiting area at the hospital, I was approached by a young woman who asked if I was a patient and taking the treatment – could she ask me some questions. She is planning to begin treatment in the New Year and was clearly uncertain about taking it all on. What is it like, what did I do to get ready, is it difficult, etc. I could identify with her – I remember my own apprehension about this undertaking. I could answer her questions easily and could hear my own confidence, now that I have crossed that boundary of being ‘in treatment’. But as we talked I knew we weren’t really touching on the difficult issues – whatever these might be for her. I might be mistaken, but I sensed she was very frightened.

As patients we can be given all the information – about the disease, about the side-effects, about being in treatment, and so forth, as well as support – hearing from those who have already done the treatment, what it’s like to live with HepC+, etc. However, I am convinced that people also need the opportunity, in a supportive context, to consider and address their innermost fears and hopes about this undertaking. And to look realistically how this treatment will change their lifestyle considerably.

I know I needed to get down to facing my fears and saying them out loud – my fear that my liver won’t get better, my fear of dying, my fear the treatment won’t work for me, my fear that side-effects could permanently damage me. I also needed to express my anger that I have this disease.

After I had faced these anxious, distracting issues and voiced them I found I could then go on to focus on the hopeful and positive feelings I also have about the treatment.

I did this in the safe environment of counselling and I am certain this is a key part of how I arrived at a positive state of mind before starting the treatment.

There is lots of advice on various hepatitis websites about getting support and getting ready. Unfortunately, the main source of such support is seen to be the local HepC Support Group.

I am not against Support Groups – I attend one myself. Because of the way support groups are structured and from my experience of sitting in them, I would question whether this is the appropriate place to air very personal, intimate and deep emotions. I suppose I wonder why counselling isn’t recommended as a standard part of preparation for this treatment.

I am certain that the woman who approached me in the waiting area was feeling some difficult or deep emotions about the prospect of treatment – but we weren’t talking about these. Unless she finds some place to look at these issues, they will continue to hover in the back of her mind and distract her from the benefits and positives of treatment. They could interfere with her commitment to treatment. A few sessions of counselling support could make the difference between her making a positive and informed commitment to treatment and dropping out part way through as she hasn’t been able to cope with her difficult emotional issues.