The round table lunch hosted by the PA Society for clinicians, researchers and academics associated with the society took place on Wednesday at the Royal Society for Medicine. It was an even bigger success than last year’s event. It’s amazing to see how the different disciplines associated with Pernicious Anaemia interact when they are brought together. Two Master Degree Research programmes are now going ahead following the event, both on the biochemistry associated with the disease.
If I’ve learned one thing in the ten years I have been involved with the society it is that there is absolutely nothing to be gained by pointing the accusing finger at doctors for the failings in the diagnosis and treatment of the condition. Doctors are the end-point in diagnosing and treating the disease. And their clinical judgement is based on established scientific knowledge. And that scientific knowledge is outdated. Five Nobel Prizes for Medicine were given for the work done in unravelling the mysteries of PA, and, once a test was developed and treatment devised, the disease itself seems to have been forgotten until the PA Society started to uncover the series of problems relating to the diagnosis and treatment. But whilst the society is all too aware of these problems there isn’t any scientific knowledge that can explain these shortcomings.
Take, for example, the single most common cause of complaint by members of the society – the problem with some members needing more, in some cases far more frequent replacement therapy injections than others. In most cases where the patient’s blood is analysed when he or she is experiencing the return of the symptoms of the disease the B12 levels will be shown to be above the threshold used to determine a deficiency. This issue has, in the past, been, attributed by doctors to the patient ‘imagining’ that his or her symptoms have returned; and this is done because the scientific data shows normal or high serum B12 levels. It’s not that the physician is being deliberately awkward, it’s simply the case that the patient’s B12 deficiency has been addressed and so there is no other explanation as to why the patient is experiencing the symptoms of any deficiency other than ‘imagination’.
There’s something not right. And the first explanation given runs along the lines of “it must be a problem in the B12 getting into the individual cells”. But when any scientific explanation to explain this is searched for there are only vague references to it. There has been no solid investigation into this. Now, you may be wondering why I am talking about this when I’m supposed to be updating you on the round table lunch. Well the answer is this. At the gathering was an internationally renown clinical researcher (a Gastroenterologist) who for years has been wanting to investigate this issue of why some patients need more frequent injections than others, but in order to do this he needed some radioactive B12 and, despite his and his colleagues best efforts, they have, in the past, been unable to source any. Sitting on his right at the dining table was another Professor, this time a biochemist. “You couldn’t get me any radioactive B12 could you?” the first researcher asked the biochemist who responded with “I can make you some – what radioactive label would you prefer?” There was a look of absolute astonishment from the Gastroenterologist. And that little encounter, over Turkey and all the trimmings, is the beginning of a solid and serious investigation into the most common problem for patients with PA – why some need more frequent injections than others. Good stuff eh?
That wasn’t the only outcome of the event but it was the one that I was privy to. As I was leaving two other researchers asked if it was okay if they applied for funding for a Master’s degree in collaboration with the society – I couldn’t say no could I?