Martins Blog Archive 3




Wednesday 27/07/2005 - Eleven Plus?

I suppose I ought to be a bit down and anxious as the dreaded 12 week test is on Tuesday, and the anticipation often corresponds with a 'flat' patch for heppers. I can quite fathom the reason for this, as the test is a bit of a mixed blessing. A pass, being a 2 log drop or more, means another 36 weeks like the past 12, and a fail means an uncertain future. Neither prospect fills me with much enthusiasm at present, so for the time being I'm ignoring it. Ostrich syndrome, I suppose, but lots of other things are happening and keeping me busy.
The newspaper (East Anglian Daily Times) that published the quite good article on Hep C which was ruined by Dr. Gareth Richards ill-informed and innacurate comments has been as good as its word, and the Boss and I have done an hour long interview, and had the photo's taken yesterday. It should go to press Monday, so we will see what results. It may do something to redress the balance, and on the basis that 'any publicity is good publicity' it can only help. It is a little unnerving trusting a complete stranger to get it right, even a good reporter, so we will see if our faith is well placed. I have not seen what is going to press! It is very difficult to get a point of view across without overloading people with information, and requires a skill that I am only just starting to develop. It is also another nail in the coffin of any annonymity that I still have, but when the call comes to stand up and be counted you cannot just shy away and say 'not me', and still expect to face yourself in the mirror each day.

I have been pleasantly surprised to find out recently how much my local MP is behind the cause. David Ruffley is a definite asset, and is making life very difficult for several under-performing health organisations. What is more, he has been doing so for some time and is starting to get results. They may be able to fob off members of the general public, but MP's are a different matter. I suspect that if more people with an interest in Hep C actually wrote to their MP's the results might be quite startling. When ministers are repeatedly hauled up in front of parliamentry committees and questions asked in the House results tend to follow. It is a trifle more subtle than Paulo's 'chained to the railings' approach, but their is room for both and anything that gets a result suits me!

On the subject of campaigning, this week sees the launch of a European initiative to improve Hep C Treatment. There is a petition being launched which may well start things moving. The petition can be downloaded from here (at the bottom right hand side of the page). A bit of European co-operation strikes me as being a good thing, as sooner or later someone will start comparing our figures with the rest of Europe and see what a complete hash we are making of Hep C treatment in Great Britain. Everyone with Hep C should collect at least ten signatures to represent themselves and nine other people who have the virus and don't know it, because that is about the right proportion. Then get a few more, to represent those who will catch it in the future from current undiagnosed cases.

The treatment situation in Suffolk looks as if it is actually more desperate than I first thought, and that is bad enough. John has data that suggests that the East Suffolk area detects about 80-100 cases per year amongst injection drug users, (and an unknown number of others), and they have capacity to treat up to 10 cases at Ipswich, and are actually treating 4 due to budget restraints. Yes, FOUR! No mistake! 95% of cases are not treated. On that basis, I am damned grateful for my treatment, and looking forward to Tuesday's test!

Sunday 24/07/2005 - Pie in the sky?

It continually amazes me how reluctant Primary Care Trusts are to actually address the treatment of Hep C in a realistic manner. It does not seem to have dawned on them that they will have to treat all the cases in their area sooner or later, and there is much to be said for addressing the problems now.
Firstly, every case that is postponed becomes more expensive to treat by the day. Cases waiting treatment still require monitoring and consultations, and delays continue to degrade the success rate, so that the effective cost per cure rises. Every patient that is left untreated becomes a slowly increasing liability to the health service. Untreated, one in five of these patients will end up with liver failure or cancer, and treatment in these cases is very expensive indeed with the ultimate bill being £250,000 for a liver transplant. Even given the high cost of current treatment, it is still amounts to less than half the cost of not treating and allowing the disease to progress.
Secondly, there are economies of scale to be had in that one consultant supporting several highly trained nurses can cope with a considerable caseload very efficiently. Small scale operations push the cost-per-patient figure up considerably and are not really viable. You also get a benefit in that if the team handle HCV cases only, they rapidly become very experienced, and the quality of care soars.
Thirdly, the success rates of treating patients at an early stage are much better, and complications fewer. Successfully treated cases require minimal monitoring, and return to being positive financial contributors to the state, rather than becoming an increasing drain. It does not take very long to recoup the cost of treatment from tax revenue when treatment is done at an early stage before the patient becomes seriously ill.

All this makes such good economic sense that you would have thought that Trusts would have Hepatitis C treatment at the top of their priority lists, with the aim to get on top of the situation and prevent it from becoming a problem. No such luck! It barely figures in their thinking, and the majority have no understanding of the virus at all. Typical waiting times are now around 18 months, when the government target is 18 weeks. It is blatently obvious that to improve this situation the only current option is to pressure the PCT's into spending more on Hepatitis C treatment, and in the majority of cases this is futile as they are already over spent.
I would suggest a slightly different approach. As the cost of drugs amounts to a sizeable proportion of the overall cost of treatment, why not fund this cost directly from central funds? The cost of treatment born by PCT's then becomes smaller, and more reachable from hard pressed budgets. Efficient treatment, in terms of staff and facilities becomes more obvious as the figures are not swamped by the drugs bill. In short, treatment becomes more efficient, and not held up by lack of funds.
In the mean time all we can do is to continue to press the Trusts and politicians, and hope that if the miracle cure that has eluded the boffins finally arrives, that it will be cheap, or at least less expensive than the current stuff. Otherwise they might as well not bother to develop it as we will never be able to afford it.


Sunday 17/07/2005 - Double Figures

I confess to a lazy weekend, a fair proportion of which has been spent loafing in the sunshine in our little courtyard garden. The Boss has been making inroads into the new Harry Potter. My turn next! My entertainment has been laid on by the local wildlife. This years sparrows are ridiculously brave, and fly between us on their way to the bird bath. They seem to be quite comfortable at anything more than two feet from humans, and even the dog has now got used to them, and reluctantly ignores them. They are getting a mite too cocky, and heading into the kitchen occasionally, as did the blackbirds, who are on their second brood, and far too busy at present.
My vine is going great guns, and absolutely loaded with grapes, which is frustrating, as even if I do the planned wine making, I won't be able to taste it until next year. Still, it will doubtless improve in that time. The passion flowers are an entertainment in themselves, as they seem to open and close at random, and are quite spectacular.
All this summertime stuff has brought the subject of holidays to the fore. I refused to even discuss it until I was settled down on treatment, but as I seem to have the side effects fairly well under control, now seems a good time. The prospective dates throw in another complication in that I'm likely to be away for the EVR test result. This bothers the Boss, but not me. The way I see it, if I make EVR nothing changes and I carry on for the next 36 weeks. If I don't make it there is no great rush for anything treatment-wise, and I might just as well be on holiday as anywhere else.
Injection 10 tomorrow, the double-figures milestone. Seems to have gone very quickly this time around. Wouldn't treatment be boring if it wasn't for the injections? They sort of 'punctuate' the weeks (pun?) and force you to keep count. It all helps to keep you positive and determined. I shan't be sorry to do the last one though! I can still remember my original course when the last 13 weeks were on a 3 injection per week regime. It was definitely an effort of will to do the last few!
The Boss raised an interesting point this week in that she proposed a new toothbrush, etc, at the 12 week point. The logic goes that if I am 'undetectable' (which I think is asking a lot,) from that point onwards it is theoretically possible to re-infect myself. The interesting question is at what point, assuming I make a 2 log drop and EVR, (which is more likely but by no means certain) does the viral load actually drop to zero? It is all fairly academic as the odds of re-infection are minute, but it is interesting to think about. In the absence of viral load counts after 12 weeks, it can only be guesswork, but I think that changes might be monthly, just in case!

Sunday 10/07/2005 - Week 9 Review

It is never nice to be reminded that we are are all mortal, and there has been rather too much of that this week. Life is a hazardous business, and it is bad enough living with the virus threatening one's existence without deranged fanatics joining in. I travel to some of the central London hospitals occasionally to look after monitoring equipment, and had they chosen a different day.....
The terrorists must have a very strange view of the British people, in that they seem to have no concept of the effect of their actions. The net result of this will be to make us more determined than ever to defeat them, and any sympathy towards their point of view has been instantly destroyed. If Hitler and his forces could not break London, what chance do a bunch of annonymous fanatics stand?
Nice comment from Ijaz on his blog. A bit more understanding all round is never a bad thing, and Ijaz has helped a lot.

Back on the subject of the virus, it is well known that treatment depresses the immune system, and leaves us open to infections, but not so well known is that Listeria which is usually a minor problem in the fit and healthy could be very serious for someone on treatment.

Favourite sources of Listeria are:-

Deli meats, or luncheon meats sold loose (unless re-heated to piping hot)
Soft cheeses such as feta, Brie, and Camembert, and blue-veined cheeses (unless made from pasteurized milk)
Refrigerated pâtés, meat spreads, or smoked seafood (unless in a cooked dish)
There is some question over the safety of organic vegetables as the fertilisers used may contain the bacteria. Make sure that they are well washed, and preferably eaten cooked rather than raw. It is a bit of an irony that non-organic food may actually be safer than organic!
It is not a case for panic, as the odds of infection are very small, but worth bearing in mind particularly in the later stages of treatment when your immune system tends to be depressed.

Tomorrow sees two small milestones. The end of my second bottle of ribavirin, and the start of my third packets of Pegasys and Copegus that will hopefully take me to EVR. Four weeks seems a long time right now, but will probably fly by like the previous eight.

I really should comment on the state of Hep C treatment in Suffolk after the comments in the East Anglian this week. Those of you who follow Ron's Blog or the Forum will be up to speed, and I am getting drained so it will have to wait!

Talking of Blogs, Tink is back and with good news! Nice to end on a bright note!

Thursday 07/07/2005 - Jeremy - An open letter

In response to Jeremy's latest post on his blog, it seems easier to provide a proper answer here.

Hi Jeremy,
You will note that I have refrained from comment since the original occasion, as I thought that we had both made our points clear, and little more needed to be said. Our approaches just differ, and time will tell who is right. However, since you have raised the subject again, reluctantly, I have to respond when I would prefer to let matters rest. When you have spent the time and effort researching HCV that I have, you will discover that there are an awful lot of quacks in this game, some with more degrees than a thermometer. Many people worldwide fall foul of them to their cost, and many still have the virus and will die slowly due to their efforts.
Much as I will fight to defend freedom of choice, I will equally battle to correct people being led astray.
Placing any faith in a nutritionist whilst on treatment is a very dangerous game, as nutritionists are not qualified to treat HCV, or amend its treatment. They make very basic and dangerous mistakes because they do not understand the treatment. It takes very little to turn what would have been a successful course of treatment into a disaster. (For instance Ashwaganda Root is described as a rich source of iron!)
My views are shared by the vast majority of the medical profession who would be a lot more outspoken if it was politically correct to do so. Fortunately, I don't suffer from this restriction.
I sincerely hope that you will continue with your blog, if for no other reason that we will all find out who is right. From the change of tone over the last few weeks, I suspect that you are now starting to feel the unmediated effects of treatment. You are your own master in this matter, and if you suffer unnecessarily it is by your own choice, not mine.
So far as 'agression and intolerance' is concerned, this applies to pushing a child out of the path of a speeding car, and has many parallels here. I sincerely hope that it has caused you to question the wisdom of your choice, but the fact that you have made no attempt to counter the points that I made would lead me to think that your actions are a case of misplaced blind faith rather than careful research.
I continue to wish you all the best with your treatment, and hope that you get a good result, but please don't goad me on the supplements subject unless you are prepared to debate the merits of each item and its use in the HCV context. I have the knowledge to do just this, do you? I am happy to rest my case at this point!
Martin


Back to more routine stuff. Tuesday's bloods are in. Last month's figures in brackets.

LFT's are 'Normal'.
HB 12.1 (11.6)
Platelets 197 (262)
WBC 3.7 (4.5)
Neutrophils 1.5 (1.3)

Generally pretty good. I was a little bothered about the continuing WBC drop, but 'T' says that she takes more notice of neutrophils, and is unlikely to worry until they get close to 0.75. The anaemia levels all seem to be stable, and I generally feel pretty good, so all looks set fair for the next serious hurdle which is the dreaded EVR virus count in 4 weeks. I am actually looking forward to it. Tempting fate maybe?


Sunday 03/07/2005 - Live 8

Still talking about the Live 8 show. Great music, great atmosphere, but will it get a result? I doubt it. Was it my imagination, or was there a definate relationship between the quality of the performance and the age of the performers? Madonna, who is no spring chicken, showed just about all the solo female artistes exactly how it should be done, and had been rehearsing hard to get it right. Floyd looked as if they would be more at home in a gentleman's club, but produced a superb performance which belied the fact that they had been in retirement for years. What's more they appeared to be thoroughly enjoying themselves, which bodes well for the chances of them doing a full concert rather than a fifteen minute spot.
The last time I saw Floyd live was at Knebworth, and you can work out for yourselves how long ago that was!
'The Boss' and I were looking at the shots of the crowd filling Hyde Park, and she commented that the number of people there was about the same as the number of undetected HCV cases in Britain. If you believe some estimates you could add all the people at the Edinburgh demo as well. If they were actually all the undetected cases I don't think they would be pacified by a concert somehow! Ignorance is bliss?!
Right now I am what is politely called cream crackered! The concert overrun, and a solid day working on the kitchen (still!) have just about finished me for the day. Back to work tomorrow for a rest! It is injection 8 on Monday, and off to see 'T' on Tuesday. Hopefully blood results late in the day. Mental note to check what tests are planned for the 12 week appointment. Hopefully it will be qualitive and quantitive PCR, and I need to check the threshold of detection if they propose anything less. It would be very nice to be 'undetectable' at 12 weeks, but you need the qualitive test for it to be of any value as the quantitive often has a threshold of several hundred. All a bit optimistic really, as the target is 7700, and if I don't make that all bets are off, and it is back to square one!
So its two thirds of the way to EVR! Keep slogging on, and stay positive! (and hope to be negative!)


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