I’m aware that the questions that have been submitted to the government by Lady Margaret have been criticised in other places. It seems that in submitting the questions we have “alerted the government” to the fact that many patients with Pernicious Anaemia who are unable to receive a treatment regime based on their individual needs source more injections from online sources. Whilst I don’t usually respond to social media comments I returned from France this morning to find that a number of members have heard about these comments and are frightened that the government will shut down these internet companies supplying the vitamin and whilst I have been able to talk on the telephone with these members and reassure them I am aware that there may be a great many others who have heard these scare stories. And so I’ll set the record straight.
Firstly, the government is fully aware of the fact that some patients turn to other sources to purchase their injections and have been for many years. I know that they know because I have discussed this with officials who I have met. Indeed, the results of our survey (which has been referenced over 50 times by other researchers by the way) mentions that 10% of our members use a form of B12 that is not even licensed in the UK, Europe or North America. The purpose of the question is to alert the government to the fact that the one-size-fits-all treatment is not adequate for a great many of our patients. Two MPs who we met at the Parliamentary Reception in February told me that both of their wives were supplementing using injections bought over the internet. So the government along with NICE, the Royal College of Pathologists and various other bodies already know that this is going on.
Secondly ask yourself what the government could possibly do to stop patients buying injections from the internet? The answer is absolutely nothing. The UK Government could pass a law that would make buying these injections illegal but how on earth would they police and enforce that law. They couldn’t force any internet supplier to stop supplying because many of these suppliers are based in countries where purchasing B12 injections can be done perfectly legally in shops and pharmacies. So how could the government legislate and “cut off” this supply route – the answer is they cannot.
Please be reassured that even if the government wanted to stop people buying their injections from various sources including those online, there is nothing they could do to do so.
Thirdly, the government can’t simply pass a law – it has to be agreed by parliament, both houses, and as you are probably aware we have been busy forging links with parliamentarians to make sure they are aware of the problems our members face in getting adequate treatment.
Of course, it’s a different picture with doctors supplying injections “off prescription” because the British Medicine’s Act of 1967 states quite categorically that any medicine that is injected has to be prescribed yet it is extremely easy to find a doctor who will provide extra injections without prescribing but of course these come at a price – £248 is being charged for one injection in one clinic – nice easy money for an injection that costs pennies.
Those questions have been written and submitted to show the dreadful shortcomings in the way in which any B12 Deficiency is identified and whether that deficiency is due to Pernicious Anaemia (it almost always will be in the developed world – it’s just the test for Intrinsic Factor Antibodies is not fit for purpose). But it is not only the problems with diagnosis that are being raised – it is also the pathetic treatment for Pernicious Anaemia (that is, incidentally, based on research begun in 1948 on just 7 patients) that also has to be addressed in order that patients can get the treatment they need from their doctor regardless of ability to pay and source alternative treatment.