So here I am again, on the train bound for London. The journey will take me via Gloucester because the Severn Tunnel is closed. This detour adds another hour to my journey. However I’m not moaning as I’ll get to see the magnificent Gloucester Cathedral up-close as I pass through the city, and the beauty of its Cotswold Stone glowing serenely and confidently in the English summer sun is one of the world’s fabulous sights.

It’s less than a week since I was last in the Capital but this time, rather than representing members in employment-related tribunals or hearings, meeting scientists with an interest in research or making presentations to groups of professionals, I’ve been invited to take part in a very important meeting of the Committee that is acting as the secretariat to the UK’s Government which is considering introducing fortification of flour with Folic Acid. As you know, or should know, adding Folic Acid to foodstuffs can and does mask some of the markers of Vitamin B12 Deficiency. As a consequence, if this policy is introduced it would probably mean that even more people with a B12 Deficiency will be waiting longer to be diagnosed as being deficient and whether that deficiency is caused by Pernicious Anaemia.

Neural Tube Defects

The addition of Folic Acid to foodstuffs (in this case flour) has the positive result of reducing significantly the number of Neural Tube Defects in new-born babies. As I state in my last book, one study found that there was a massive 46% reduction in Neural Tube Defects which is a pretty good argument for the introduction of flour fortification with folic acid by the UK Govt. Incidentally, there are 20 countries in the world that have gone ahead with fortification including the U.S.A. and Canada. Again, in my last book (you really should get it if you haven’t already done so) I said that in the UK 14% of women of child-bearing age are deficient in Folate which means that their babies are at risk of developing neural tube defects such as spina bifida.

I was contacted by the secretary of the committee a few weeks back and asked my opinion on fortification. I quoted the PA Society’s policy which was adopted a few years ago. Because of the obvious benefits of folic acid fortification for pregnant women and their babies, we are not against the fortification of flour with folic acid. However, we strongly believe that before any fortification takes place then the way in which Vitamin B12 Deficiency is diagnosed needs to be improved significantly; bearing in mind that the current Serum B12 test is now discredited and that B12 Deficiency can also lead to neural tube defects this must be seen as a priority before any policy is adopted.

Reply

I suspect I shall be asked how the detection of B12 Deficiency can be improved. And this is how I will reply:
I shall say that doctors first of all need to ‘look for it’ – that is suspect that the patient’s symptoms could be due to a deficiency in B12 I shall say that perhaps the thresholds used by various laboratories to indicate a deficiency should be more uniform and much higher than they are at the moment (let’s go for 350 pmol/L) I will point out that MMA and Homocysteine tests show promise if used alongside the ‘Active B12 test – though I will make the point that this has not been thoroughly investigated and a very complex mathematical formula must be used to interpret the test results.

But more than all this I will be able to provide the committee with the patients’ perspective. I will be in an unique position to tell them how the problems with diagnosing Pernicious Anaemia is affecting the patients’ lives; how it is causing serious problems with their everyday lives, their work, their families and their social life. I can tell them what it’s like to be undiagnosed and how the symptoms do not miraculously disappear once treatment has begun. And I can tell them that those sitting around the table might be deficient and how folic acid fortification might lead to them being diagnosed late.

Serious Work

The secretary of the committee sent me a ‘discussion paper’ that is fifty pages long and contained over 22,000 words. It’s a remarkable document that goes into great detail about the consequences of fortifying foods with folic acid. A significant part deals with the serious problems with the current tests used to diagnose any B12 Deficiency and whether that deficiency is due to Pernicious Anaemia. The writer had obviously conducted very thorough research into published work surrounding all of this and it probably took her a few months of investigation. And the committee is to be congratulated for involving the PA Society in its deliberations as I’m sure they will all have read my briefing paper that I wrote specifically for today’s meeting and that they will take on board what I have to say. Hats off to them for asking me along. They also asked if I could invite an expert with a science background to attend and so I’m being joined by the professor who identified the strange things in the stool samples which will be something new to consider.

Disappointments

There are however two disappointments. Firstly I was on the wrong side of the train to see the magnificent cathedral as the men opposite have pulled down the window blind to shield them from the July sun.
And the second? Well the references to that discussion paper ran to six pages. And they didn’t mention me and my books. But you can bet your bottom dollar that by the end of the meeting they will be aware that they really do need to read all three of them – but especially the last!

I’ll let you know the outcome of the meeting but don’t hold your breath. I now understand that this conference will be just the beginning of a long consultation process that will, I hope, be enriched by the contribution that I can make on behalf of the Pernicious Anaemia Society.