Allergy Relievers: Red Light Nonsense

Its just about coming into allergy season again, so today I am turning my attention to a product I’ve seen for sale in a few pharmacies I’ve locumed at of late: The Allergy Reliever Device. These things are sold under some pharmacy chain’s own names, or under brand names like Kinetik.

It’s yet another medical device. These things seem to be hitting the pharmacy shelves more and more often these days, giving them a level of respectability which personally I don’t think they deserve. At least this device makes it clear that it is a device though, unlike things like Prevalin which pretend to be real medicine.

According to Kinetik, it uses “red light therapy to suppress the cells that release histamine, thereby relieving the symptoms of hayfever and allergic rhinitis.”

So, essentially shoving some Christmas tree lights up your nose then. Well I must admit that’s a new one on me. It’s pretty hard to sniff out (geddit?) the theory behind this one too.  The manufacturers of these things don’t give any explanation as to why red light would suppress mast cells, and several Google searches later I’m none the wiser. I have managed to dig out one published paper in rats, where the authors seem to be suggesting that red light changes the redox state of cells, which might cause some changes within the cell. Even these others say that they’re not quite sure what’s happening though, and that further investigation is required.

Armed with a few unsuccessful Google Searches, I delved into the medical literature. I tried every which way I could think of to search for evidence that this thing works, but ended up drawing a total blank. I think this may well be the least successful search for evidence I’ve done so far, and that’s saying something. Even the manufacturers can’t be bothered with listing any sources instead they go wild with the clipart, giving us a Generic Smiley White Coated Person and Happy Photostock Chef alongside some very random recipes and general lifestyle advice.

And it looks like this thing really isn't very pleasant or practical to use. You're supposed to shove the probes up your schnozz as far as you comfortably can, then keep them there for three minutes. Not the most dignified of poses. And you're supposed to do this three or four times a day. That's a lot of inconvenience. Seems like prime Use Once Then Put In A Dark Cupboard territory for me, especially since taking a one a day antihistamine tablet is no hassle at all. 

In short, I wouldn’t waste your money. There’s no basis to these things, and it saddens me that they are not only being sold in pharmacies, but are being sold under pharmacy brand names. The more we associated our profession with such nonsense, the less trustworthy we become to other healthcare professionals and patients alike.

Hxxx

"I do my own research"

Something that I see a lot in on-line debates about alternative medicine is phrases like “I did my own research” or “people should be allowed to do their own research and make their own decisions”

However, I don’t think that the vast majority of people are able to do their own research. Now, that’s probably a pretty unpopular opinion. It’s patronising, paternalistic, and it flies in the face of patient choice. Who am I to question the intelligence and abilities of other people? Why do I think I'm so clever compared to anyone else out there? Allow me to explain myself.

I've been a pharmacist for a very long time now. From uni, through pre-reg, to my own revision at work, I've been taught critical appraisal skills. Yet to this day, it’s something that I actually find really hard work. It’s a skill that requires continual honing, and every time I use it I feel like I am fighting with my brain.

Even in the last two weeks, I've been revisiting my critical appraisal skills to make sure they are up to date. I've done some in-house work, three on-line courses, and a one to one training session. Yet I still find myself sat here at my desk for several hours, if not days, looking over the same study with a furrowed brow, desperately trying to make the numbers and statistics tell me their story.

There’s hazard ratios, odds ratios, confidence intervals, numbers needed to treat, event rates, absolute risks and other confuddling terms to deal with. I naturally struggle with numbers at the best of times; like most people, I much prefer narratives. That means that I have to constantly argue with myself to keep looking at the results page, rather than just flicking to the discussion. Becasue if I did that, I'd be relying on what the authors, with all of their possible biases and agendas, say their numbers say. Then, when I eventually manage to squeeze the swimming mass of figures into some sort of order in my head, I find out that these numbers aren't the full story, and I need to dig even deeper into other analyses of the same figures to find out what’s really going on.*  

A quick and very simplistic visualisation of all the layers of interpretation that might lead to information found on your common or garden health information website. That's a whole lot of bias. 

I am truly terrible at MS paint, but you get the idea. 

What a typical EMBASE search looks like. This is for a new drug with few synonyms so its a fairly straightforward one. Others can have forty odd lines of searches. 

It’s not a pleasant task by any stretch of the imagination. It really does feel like a mental marathon. I often question whether I am even up to the task- I can end up feeling stupid, and confused. But in order to really figure out whether or not a drug works I need to strip away all the levels of other peoples’ interpretation and start from scratch, with the cold, hard, impersonal numbers. That way I can build my own narrative, uninfluenced by what the study’s authors or sponsors want me to think, by what newspapers want me to believe, by what campaigners want me to know. The only way to know the truth is to start right at the bottom, in a dark dank pit of statistics, then to slowly start building yourself a ladder until you emerge, blinking, into the pleasant knowledge that you've worked out what on earth is going on.

This sort of raw data is not only extremely hard to deal with once it’s in front of you, but its also pretty difficult to come by. Finding it in the first place includes searching multiple medical databases- and these things aren't just a quick free text search like you would do on Google. Constructing a search can in itself take an hour or so, and then you have to trawl through the results to decide which are relevant to what you are specifically looking for. For me, most of the time, a question is structured like this:

What is the evidence that [drug/ group of drugs] works for [disease] in [patient group]?

                                                        

So, in my poorly drawn Venn diagram below, I need to find those holy grail papers that reside in the pink area:

Some of these papers might be pay-walled, so it’ll take me a week or so to get my hands on them. Some of them might initially look promising, but once you start to dig down into the figures you see that there might actually be problems with how they were undertaken or reported, or they might turn out to not quite fit in some way- perhaps the dose they used in the trial is different to the licensed dose in the UK, or the people enrolled into the trial don’t quite fit the population you want to know about, or perhaps the trial just didn't recruit enough people so any results from it are invalidated.

I've been doing this job for years, and I really do still struggle with all of this stuff. That’s not because I'm poor at my job, or because I'm stupid, or because I haven’t put the effort in to understand it. It’s because, when it comes down to it, this stuff is really bloody hard. It’s time-consuming, boring, and unintuitive.

People might well feel like they've done their own research. They might spend several hours digging about on the internet and feel empowered by any decisions that they make. But what they don’t realise is that what they've been researching isn't just the information- it’s the information with many, many layers of interpretation (and therefore bias) added. For a choice to be truly informed, you need to go right back to the start, to those terrifying tables of numbers and statistics. That’s simply not realistic for the majority of people.

Far better, then, to learn how to decide on whose interpretation you’re going to rely on. Will it be those that take the media reports at face value, or who have an agenda or a product to sell you? Or will you go with those that have years of training in how to pull apart complicated data and disseminate it in understandable ways?

Hxxx

*I thought I’d give you a quick real life example here, but I thought it best to asterisk it because I've probably bored you enough already. I'm currently looking at a drug called edoxaban and its use in reducing the risk of stroke in patients with atrial fibrillation. It’s the newest in a series of  novel oral anticoagulant drug- they’re supposedly like warfarin, but less faffy. So I find and look at the main trial, and spend days unpicking the stats. It looks like both strengths used in the trial are no worse than warfarin, and the higher dose might even be a little better. Great, right?

Well, that’s not quite the end of the story. Because it turns out- and this isn't reported in the trial at all, but instead is contained in the FDA’s briefing document- that in people with fully working kidneys, edoxaban is actually worse than plain old warfarin. In people whose kidney’s aren't quite at full capacity though, it might work better than warfarin. So the overall trial results are kind of skewed, and if we didn't dig deeper, we might have been giving a whole group of people a more expensive drug with worse outcomes than warfarin.

Why I'm not a member of the RPS

Since there's a whole load of people tweeting their reasons for why they've renewed their membership, it seems like a really good time to discuss my reasons for not renewing.

Historically, membership of the Royal Pharmaceutical Society of Great Britain was mandatory, as they acted as both a professional body and a regulator. Their fees were huge- £400+, and they had a reputation for being very meek and for being a bit of an Old Boys Club. Then the split occurred, and now we pharmacists have to pay the regulator, the General Pharmaceutical Council, but we can choose whether or not we want to fork out for RPS membership. When I was working towards being a pharmacist, I was so excited and proud to be part of a professional body. I'd love to still feel that way today, but there are a few things standing in my way. Some of these reasons are very personal to me, whilst others I think may resonate with many. I can but hope that if they are read by anyone at the RPS, my comments are taken as they are meant- constructively, and with a hopeful heart that one day I will be convinced enough to renew my membership with them after a long hiatus.

1. Cold, Hard Cash

Membership of the Society costs £192. That's a lot of money. Surprisingly, that's not a popular opinion- whenever I say so on Twitter I am hounded by comments like "It's only the price of a pint of beer per week" or "just give up your morning coffee!". The inference is that my priorities are all wrong, and I must be mad to not join for such a reasonable price.

A few years ago, I really was in financial trouble. It was a combination of things, including a divorce, that got me to that point. Some of those things were my fault, some weren't, but none of that mattered when I had ran out of my overdraft and an enormous bill was overdue. I'm now at a much more stable point in life, but that time is still fresh enough in my memory that £192 is still a lot of money for something non-essential.

2. Attitude towards poverty and Other Snark

There have been a few occasions when I have mentioned that I can't justify the cost on Twitter, and as mentioned above the response has been rather eye opening, sometimes from RPS staff. It would appear that there is a complete lack of understanding of financial difficulties from some quarters. You try to explain that yes, it might just be the price of a pint per week, but if you haven't got the price of a pint in the first place it makes no difference, but that concept just does not appear to compute. Some of these conversations got so bad that I had people DMing me to check that I was okay.

I've been made to feel ashamed and belittled. This may not have been intended, but this general conception that pharmacists- presumably because they get paid fairly well- must never have real money worries is really concerning to me. A good wage is brilliant, but it doesnt 100% guarantee such financial security that £192 seems like a throwaway amount. Sometimes life just steps in and mucks everything up. As health care professionals, empathy is an extremely important skill, and there have been a few occasions were that seems to have been lacking. If folk can be so dismissive of financial hardships, what else could they be similarly judgemental about?

Additionally, I did see another, unrelated snarky tweet by a very prominent member of RPS staff to a tweeter who had dared to ask for evidence. This may be a very minor thing, but to me its a big no-no, since I'm so passionate about evidence based medicine.

I wish I had screenshots of all of these conversations, but they happened a long time ago and I'm too tired to try to hunt them out. I know this might all sound super petty, but for an organisation with professionalism at its very heart, I think such seemingly small things add up.

3. Evidence of Value for Money.

The RPS certainly does some very good work. And I can honestly say that I hugely admire their improvement over the years that I've been a pharmacist. They're a lot more visible these days, a lot more proactive. I've admired their stance on things like social media, homeopathy, and e-cigarettes. I love that they've collaborated with Sense About Science. But, despite all of these advances, I'm still not entirely convinced that membership would make enough difference to my daily life to justify a cost of £192. How do I know, if I'm not a member? well, I know this isn't particularly robust, but from my own n=1 experience of previously being a member compared to now, I see no difference.

I've never had a patient look at my credentials and say "Here, you're missing an R and an S from your MPharm, you must be a rubbish pharmacist.

4. Money=Professionalism

This is a concept which I simply cannot abide, but which is creeping more and more into the forefront. It seems that organisations are starting to equate RPS membership with professionalism, and this is very simply not the case. Throwing money about does not, under any costs, make someone more professional. I know some really terrible, unethical pharmacists who are members. Homeopathic pharmacists who repeatedly endanger peoples' lives, in spite of the RPS stance on homeopathy, appear to be members. Then there's me, who works bloody hard to be a good pharmacist, to promote safe and effective healthcare, and who spends sleepless nights worrying about my patients.

What of those of us who work our asses off, day by day, to help our customers, pay our bills and maybe, if we're lucky go on a little holiday? The implication that people who cannot afford membership are somehow less professional really, really drives me mad, and far from making me rush to hand over my cash, it instead distances me further.

5. Previous personal letdowns

I've written previously about a complaint against me when I was newly qualified, which was handled by the  RPSGB. Although they no longer deal with complaints, I was left with a lasting sour taste in my mouth following that experience. I spent a lot of time with the inspector, talking about the substandard working conditions I was being forced to work in at the time. I was assured that the RPS would fight to improve those standards, and that they would be taken into account. Of course there was no mention of that conversation in the report i later received.

I know this is anecdotal, and I know its unfair to tar the current RPS with the same brush as I did their predecessors. But it does mean that to me personally, they need to work a little harder than usual to win back my trust.

My Joining Threshold

I'm not entirely sure of what would convince me to join as of yet. This is still, despite all of these years, pretty nebulous and shifts occasionally. Some of my admittedly vague suggestions where there is room for improvement are:

• Guiding a sea-change in the profession to embrace evidence-based medicine. 
• Speaking up about the amount of unprofessional quackery for sale over pharmacy counters. 
• Truly standing up for everyman: acknowledging the importance of every pharmacist out there with aching feet and a headache who hasn't had a proper lunch break in years. 
• Shaking off the traditional top-down culture of the profession and finding creative new ways to really listen to those of us working at the front line- those of us who can't get the time off work to attend meetings in London and who are too exhausted at the end of our 16 hour shifts to spend hours reading consultations .
• Making some really meaningful steps towards changing poor workplace conditions for pharmacists.
• Constructively engaging with non-members in order to raise the profile of the profession cohesively, rather than creating a false, unhelpful two tier system
• Working towards breaking through mental health stigmatism both for patients and within the profession. 

The other important factor for myself is of course financial stability. I'm getting there. I'm not ashamed to say that at the moment, though, I'd rather prioritise that pint per week over membership. My social life is extremely important to me- its what has gotten me through the hard times, and I can see a clear benefit to my life from it. At the moment, sadly, I can't quite say the same about RPS membership, though hopefully in time I will be persuaded otherwise.

Hxxx