Some people have read my previous post and have unfortunately misinterpreted what I have said.  Here is my post regarding new treatments of Pernicious Anaemia in point form:

1. The UK’s Medicines, Pharmacy and Industry Group (MPIG) is going to start persuading pharmaceutical companies to look at new ways to treat Pernicious Anaemia.

2.  These ‘new formulations’ may well include a high dosage (1-2mg) oral tablet which would be the strength required to potentially treat Pernicious Anaemia (I know that some of our members take high dosage tablets rather than have injections). Around 300 of our members in the UK opt for this particular treatment even though the new Guidelines from the BCSH state that injections are the best way of treating the condition. 

3.  If patients want to treat themselves using tablets they have to buy their own as high dose B12 tablets are not available on the NHS – but I suspect this will change soon.

4. There are other delivery methods that have been developed but have not been evaluated.  Before the introduction of these new methods I am asking for a full evaluation of their efficacy be carried out.

5.  The problem lies in evaluating the effectiveness of the treatment.  We know that some patients need much more frequent injections than others in order to feel benefit – and the PAS is working with a team of researchers to investigate why this is so as most doctors will immediately jump on the ‘it’s a placebo’ explanation even though there is no evidence of this. We know that using different forms of B12 delivery methods increases serum B12 – that is evidenced and yes, that includes tablets of B12 even for those with Pernicious Anaemia.  But that does not in itself mean that the patient will immediately feel better.  Simply raising B12 serum levels doesn’t always mean the patient feels better – some patients need enormous amounts of B12 to feel any benefit and that is why evaluating the effectiveness of the treatments needs to take into consideration how the patient feels rather than simply measuring their serum B12.

6.  The Pernicious Anaemia Society has, and has always had, one of its objectives that states we want patients with Pernicious Anaemia to have a choice of treatments made available to them (there isn’t any in choice in the UK at this time) and for the patient to be able to access this treatment according to their individual needs. There’s no reason why patients cannot be taught to self administer small, daily or thrice daily sub-cut injections but again this hasn’t been looked at.

7.  I anticipated the reaction to my blog – as I wrote in my blog

There will be those, I’m sure, who will now take what I have read as evidence that I support the withdrawal of injections as a form of treatment.  That is not what I am saying; rather I am just pointing out that the treatment used for Pernicious Anaemia today is the same as it was 70 years ago and there must be a more effective delivery method of B12 – and there are, but they haven’t been evaluated. 

And one of these alternative delivery methods will be self-injecting.

8.  The British Committee for Standards in Haematology recognises that currently injections are the most sure-way of treating pernicious anaemia and that the use of tablets (even though some of the members of the PAS use them) needs to be evaluated before being introduced:

‘However the efficacy and cost–effectiveness of oral treatment in wider population-based settings has yet to be established. There are arguments against the use of oral cobalamin in initiation of cobalamin therapy in severely deficient individuals who have poor absorption, especially due to pernicious anaemia’.

and then again:

‘On the other hand, some patients may prefer intramuscular injection therapy in order to assure effective treatment

Exactly!

To sum up then – the Dept of Health in the UK is actively seeking pharmaceutical companies to develop new treatment methods.  That can’t be stopped.  The way in which Pernicious Anaemia is treated is 70 years old and is, unfortunately expensive – not in the cost of the injection but in nurse time (estimated at a quite convenient £10 per injection).  The treatment is invasive, not without risk and often not centred on the individual needs of the patient.  New delivery methods such as sub-lingual sprays, nasal drops, infusions etc need to be thoroughly evaluated – and that means that any evaluation must take into consideration how the patient feels on that particular treatment – not just on rectifying any serum B12 deficiency.

Things are moving on and we cannot stop these developments.  What I’m saying is that we, as a society need to be vigilant and have a say in what is going on.  By far the biggest concern of our members relates to them getting an individual based treatment regime.  This causes all manner of problems five of which manifested themselves within one hour yesterday (see new post).  New delivery methods hold out the promise for better treatment based around the needs of the individual patient.  Either we get actively involved in this or we keep our heads down and do nothing.  I think playing an active role is a much better option.  Don’t you?