So here we are – seven years after we began the campaign to get someone who knows what they are doing to review the way in which PA is diagnosed we now have a new set of Guidelines produced by the British Committee for Standards in Haematology that acknowledges that there are serious problems with the way in which Pernicious Anaemia is diagnosed. It’s strange to reflect that during the campaigning to get the way PA is diagnosed looked at it one of the options we used to put forward to doctors was that we wished that medical professionals would go back to how they used to diagnose the disease basing their decision on the patient’s symptoms rather than on the result of a blood test. We were told that that would never happen. However, the very first Recommendation states that “the Clinical Picture is More Important than the test result” so in effect the new guidelines are retrospective in that they are now telling doctors to listen to the patient rather than concentrate solely on the test result.
It took seven years of hard work to get our concerns listened to – five years of building up a good name and presenting our evidence in a calm and rational manner but five years on those doors that we were knocking on started to open. Our paper that showed the results of our survey of over 1,300 members experiences in getting diagnosed was carefully analysed and presented using the preferred format of a respectable health journal and the results showed just how the poor diagnostic procedure currently used was effecting the everyday lives of people. So, the battle to prove that the society (and me) were not dangerous nutcases finally paid off and thankfully we are now being asked our opinion on various aspects of B12 – we were even sent a copy of the draft guidelines to comment on.
Now we have had to ask ourselves ‘where do we go next’. It wasn’t a difficult question to answer. Ever since its inception the society has identified two key areas that are badly in need of reform. The first concerned the problems with the way in which PA is diagnosed and, as we have seen from the new Guidelines, those issues have now been addressed. And so now it is time for the society (and me) to start work on the second problem we face as patients – the ridiculous way in which replacement therapy B12 is provided, not only in the UK but throughout the world. And this is where I start to outline just how big a problem this is; not only for patients but also for their families and friends.
Let’s first of all go back to the early 1920’s. If you were one of the unfortunate people to have been diagnosed as having Pernicious Anaemia the term ‘pernicious’ meaning ruinous, deadly, fatal, would tend to concentrate your attention. Despite whatever your doctor would try to help you, the prognosis was not good and you would die following a long drawn out but inevitable journey. Your family and friends would only be able to make you as comfortable as possible and would have to look on helplessly as you began your final journey. Then, in the middle of the 1920’s it was discovered by doctors in the USA that eating liver, and lots of it, could keep you alive. Liver and other offal, preferably eaten raw, would mean that you could spend the rest of your life looking forward to your next dinner and hopefully a novel way of being served your lifesaver portion (they used to liquidise liver, make liver soup and all manner of other ways of trying to add a little variety into the patient’s diet). Now this would be bad enough if you happened to like liver, especially raw, but even if you couldn’t stand the stuff it would, presumably, be better than the alternative – death. Fast forward to the second half of the 1940’s and liver extract injections became available. Highly concentrated liver could be injected directly into the patient who could then join in with the rest of humanity and look forward to a less strict diet. Now, notice that nobody was told how much liver the hapless patient had to eat. He or she would eat and ingest as much liver as he or she could bear. You see, there’s no danger of overdosing on liver, not even the greatest fans of liver have ever been told to take it easy and try to cut down on their intake. Imagine somebody telling someone who enjoyed liver to try and have it just three times a week. It didn’t happen. And no doubt, though I haven’t been able to find any evidence of this, some patients needed liver, preferably raw, more often than others. While some patients would manage to stay alive on just one or two delicious platefuls of raw liver a week, others might need it twice a day. Now, imagine if you can that you are a doctor in the 1930’s and you had one patient whose family made sure that the he or she consumed liver at least once a day. As a doctor you would presumably congratulate both the patient and the family on their enthusiasm for the only treatment available at the time which was keeping the patient alive. You may wonder at the resolve of the patient and marvel at his or her enthusiasm for all things offal but you would never suggest that he or she limits the amount of liver being eaten. There was, however, a problem although this was not known at the time. Liver is high in Vitamin A (Retinol), which had been identified as early as 1013 but was not named until 1920 and much later it was discovered that taking too much Vitamin A causes weak bones. At the time that liver was being used to treat, though not cure Pernicious Anaemia this link between too much Vitamin A and Osteoporosis was not known and patients were free to bulk up on as much liver as they could manage. In 1948 two independent teams, one in the US and one in the UK identified a new vitamin, vitamin B12.
From just after the Second World War and the late 1950’s concentrated liver injections were used to keep patients alive and then, following the discovery of the molecular structure of B12 in the mid 1950s by Dorothy Hodgkin (who was awarded the Nobel Prize in Medicine for this exceptional discovery) industrial scale production of artificial B12 began and this became available to correct the B12 Deficiency in patients with Pernicious Anaemia from the late 1950’s and early 1960’s.
The chemical composition of B12 is the most complex of all of the vitamins. and even today just what it does and what it is capable of is still a mystery to the dedicated team of expert doctors and scientists who have dedicated their lives to studying it. And now that we’ve had a brief history of the vitamin it’s now time to turn our attention to the purpose of this story – why there is an urgent need for there to be a review of how patients with Pernicious Anaemia receive this lifesaving little molecule.