Roll on 2014

If you had asked me in June to write my “new year”post, I think it would have been short and a little rude, consisting mostly of “get stuffed 2013, don’t let the door hit you on the way out” and a lot of swearing.  Surprisingly, as I come to the end of the year, I’m finding myself feeling quite differently.

2013 brought some difficult times – my dad’s first anniversary, some very busy and stressful times in work, a huge increase in the number of migraines I’ve suffered with, and of course, my house fire. In many ways, this year has been quite trying. It would be pretty easy to get bogged down in all that sadness, and there were times when I did, but I’m happy to say that I’m finishing the year with a renewed ability to look on the bright side of life.

Though work was often stressful, we achieved an awful lot, and I’ve made some great friends too, and even through all the stress, we managed to have some fun :) I’m so grateful for the people I work with, they really are an excellent bunch!

I finished three years of study for my MSc, and despite all of the other things going on in my life, I managed to pass (and according to my feedback, pass it well). I’m going to graduate in 2014, and I know it’s going to be an amazing day. It wasn’t easy keeping up study during everything else, but that just makes me even happier that I did.

I suppose that the biggest event in 2013 has to be my house fire. In one fell swoop, I was left standing in only the clothes I had, and every penny I had put into the house, every hour of sanding, painting, working; all gone, just like that. For a long time, it was hard to see any happiness in this situation. Dealing with the insurance company was a deeply stressful and sometimes miserable experience, and watching all my belongings be boxed up to be thrown away, and my house be torn to pieces and dumped into skips was painful and upsetting.

It would have been very easy to just sink into a pit of despair, but I am truly blessed with the people I know, and they (you) dragged me out of it. I can’t even express how grateful I am to everyone who kept me going throughout the whole process. Some people came to bring me clothes when I had none, others, a sympathetic ear when the reality of it all came crashing down upon me. A few wonderful, generous people sent me gifts to try to lift my spirits, and they really did. I consider myself very lucky to know so many good people, both in person, and online.

My house had to be rebuilt almost entirely inside, and though I can’t recommend “catastrophic house fire” as an upgrade plan, I have had a great opportunity to restore my house, and make it really beautiful. Almost every job I had planned to do or save for in the coming years is done, and I have a lovely home to share with friends and family, and build a life in.

I am lucky, too, to be sitting here in my new house, writing this post. But for a phone call that fateful night, I would have put my dishwasher on, and gone to bed, where I would almost certainly have succumbed to the smoke that filled my house so quickly and completely. If not for a phone call, I would very likely have died. It’s a pretty sobering thought…

All told, this year has been far from plain sailing, but I feel so very lucky to have people around me to help me get through the tougher parts, and help me celebrate the good parts too. It has been a year of highs and lows, and with the help of my family and friends, I’m choosing to focus on the highs, and leave the lows in the past. 2013, you weren’t so bad after all.

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Dear Always

Dear Always,

We need to talk. It’s about your Always Dailies panty liners which, your advert assures me, will help one achieve hitherto unknown levels of freshness, the likes of which could never be realised by simply washing, and wearing clean underwear.

I remember the first time I saw your ad, because it was such a revelatory moment for me. You see, until now, I’ve largely gone through my life accepting the need for sanitary products around about once a month, but otherwise, simply wearing underwear as normal. Imagine that! I had absolutely no idea that my completely normal, typical bodily functions were so unclean during the rest of the month!

I mean, I was of course aware that, during a period, one should use scented sanitary products to disguise any sort of hint of natural odour, and I know that I’m always delighted when, at that special time of the month, I get to choose which strong artificial scent I’d like my groin to emanate should anyone have the misfortune to accidentally sniff me, but I simply never realised that I could enjoy that little treat all month long.

I shudder to think of all the awkward situations that I’ve put friends, family, and co-workers in by not smelling of lemon, verbena, roses, and aloe-vera each and every day. Why, I can only imagine the horror they must have felt when they realised that I was “unfresh.”

Sure, some might accuse you of trying to bilk more profit from women by marketing a completely unnecessary product, with a campaign designed to instill in women an insecurity about normal bodily function that they never had before. And yes, there will be some who may accuse you of trying to make women feel ashamed of something that they have absolutely no control over. There might even be those who point out the potentially damaging impact of a message which tells young girls and women that the way a normal, healthy vagina functions is something that is the very antithesis of “fresh”, and needs to be masked, hidden, and never spoken of.

Not me though. No, I recognise the valuable public service that you are providing, and the real usefulness in making sure that women know that just using your products during their period isn’t enough to achieve real “freshness”.

I, for one, look forward to an increased range of fresh-bringing products, and would be delighted to share some ideas with you if you’d like – the completely untapped male boxer-liner market, for example, could be a real boon. Just imagine all the men out there whose genital regions don’t smell of sandalwood, old spice, and sawdust?!

I’m so sorry to have to cut this short, but I have to go and sanitise myself. It’s been a while since my shower this morning, and I think I can almost smell my skin again.

Love and freshness!

Jen

 

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Small mercies

On the 29th of May, at around 21:20, I received what I’ll now class as one of the least-fun phone calls I’ve ever had – “You need to come home. There’s smoke coming out of your house, and the neighbours have called the fire brigade”. I can’t begin to tell you all that went through my mind right then; a mixed up mess of panic, trying to think of what I might have done to have a fire start (did I leave the oven on? the grill? candles?), worrying about getting home, imagining for a moment that it wouldn’t be that bad.

As I rushed home (thankfully being driven by a friend), I thought about all the work I had recently completed on the house, and somehow managed to convince myself that it wouldn’t be that bad. I realised, in the midst of all of this panic, that I had turned my dishwasher on just before I left my house, and turned to my friend and said “it’s my dishwasher”. A few minutes later, my mum called me again to say that the firemen had entered the house, and that it was, in fact, my dishwasher that had caused the smoke my neighbours had smelt and seen. On the way, I tried to calm myself down, convincing myself that it would just be my kitchen, that perhaps I’d have to replace some cabinets, clean and paint the walls, and it would be fine. As it turns out, I was wrong.

By the time I got home, the fire brigade and gardai units had left, and the ESB were there, turning off the power to my house; too much potential damage to the wiring in the kitchen, they said, to leave it on. The dishwasher was cooling in the back garden, thrown out there as soon as it was identified as the cause of the fire. Huge fans had been used to clear the smoke from my house, only a small amount of water had been used in the house. As soon as my mum walked to meet me at my driveway, I knew it was going to be pretty bad. I was completely unprepared for what I saw.

My hall, with it’s brand new insulated plasterboard and fresh skim coat of plaster (waiting to be painted), was stained black. Plaster was falling from the ceiling.

Before

Before

IMG_2717

After

 

 

 

 

 

 

 

 

 

 

 

 

 

Just over a week before the fire, myself and my mum had painstakingly stripped layer after layer of wallpaper from the walls to prepare them for the plaster.

The dishwasher itself was burned so much that any brand or serial numbers were unrecognisable, it was just a metal shell, full of cracked and melted crockery and glasses. Yes, you read that correctly; melted glasses.

Melted glass stuck to the basket

Melted glass stuck to the basket

The culprit

The culprit

 

 

 

 

 

 

 

 

 

 

 

 

 

My kitchen, which I had taken from a dark tunnel with awful wallpaper, to a much brighter, more open space, is burnt black. Nothing inside it is salvageable.

IMG_2174

Original kitchen

photo 3(1)

After renovations

 

 

 

 

 

 

Kitchen walls & ceiling, blackened

Kitchen walls & ceiling, blackened

Kitchen post-fire

Kitchen post-fire

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I’m not sure I have the words to describe the smell, or how unbelievably hot it was when I walked into the kitchen that night (I returned to take these pictures the next day, it was impossible to see the scope of the damage by torchlight the night of the fire). The counter was still hot to the touch, and the rooms felt as if I had left the central heating running for days on end. Naively, I thought that my kitchen and hall were the worst of it, were the only things that were damaged. I was in the house for more than 30 minutes before I went upstairs, and realised just how much damage smoke can do.

My bathroom, newly installed, was destroyed. Smoke billowed up the stairs, and the heat from the dishwasher underneath likely caused unseen damage.

Cream/beige tiles, destroyed

Cream/beige tiles, destroyed

New fittings, stained.

New fittings, stained.

 

 

 

 

 

 

 

 

 

 

 

 

 

The floor tiles were the same colour as the walls, a mottled beige. The grout, though you’d never know to look at this picture, was cream. All the fittings are newly installed, and are maybe 6 months old.

My bedroom is destroyed, black soot and smoke settled on everything, turning my new white duvet a scary shade of black, and destroying all of my clothes (making my delayed luggage, and subsequent battle with Lufthansa, all the more significant and difficult for me).

I've turned a corner over to show just how black the duvet is.

I’ve turned a corner over to show just how black the duvet is.

My clothes, visible soot settled on them all. They can't be cleaned.

My clothes, visible soot settled on them all. They can’t be cleaned.

 

 

 

 

 

 

 

 

 

 

 

 

 

In short, every surface is stained and smelly, and everything I own is now more filthy than you can possibly imagine. Every soft furnishing will have to be disposed of because of the smoke and fumes which will never leave them. Every wall stripped, and in many cases, the plasterboard stripped back to the bare brick. Floors must be removed and replaced. Almost everything which is not nailed down is going in the bin, and quite a few things that were nailed down will be following. In about 1.5 hours, smoke and heat destroyed so much more than I could have imagined.

IMG_2665

My ikea-hack (a pre-fire picture)

In spite of all this, it could have been so much worse, and so I’m thankful for some small mercies. I am alive, and if I had turned the dishwasher on and gone to bed (as I often did), I’m not sure that I would be. Though I had smoke detectors in the house, I had also been due to start a new migraine medication, to be taken at night due to the strong drowsiness that it caused – with that on board, it’s not a certainty that the alarms would have woken me, and the damage to my bedroom shows how much smoke I would have been surrounded by. I have insurance, so I do not have to foot the bill for the repairs. I am hoping that I will not be out of pocket for the replacement clothing that I have to purchase (and finding clothes is another battle in and of itself), but I can only wait and see. My house, though extensively damaged, is still standing. Many of my most special things were in one of the only rooms that was not too badly damaged, containing my latest diy project – custom built-in shelves, an ikea-hack of sorts (perhaps a blog for another day). I’m thankful that my neighbours are so vigilant – the smelt the smoke, heard the alarms, and investigated. The firefighters said that the countertop in the kitchen had been minutes away from bursting into flame, their quick action likely prevented a much larger problem. I am also very thankful for all of the messages I’ve received, the offers of help, of places to stay, everything. They have cheered me up when I have felt very down, and I have been really touched that so many of you took the time to contact me.

Why share all this? I’m hoping to help people avoid a similar disaster, to learn from my rather hard lesson, if you will. If I had closed more of my doors, the smoke might not have caused such extensive damage, and I might not have been left with nowhere to live, and 2 or more months worth of repairs to be done. If I had gotten around to giving my neighbours some contact information for me, they might have been able to contact me sooner, instead of having to rush around to get my mum (though, of course, this wouldn’t have made a difference to the damage). If I didn’t have insurance, I would be completely lost. And of course, there’s the elephant in the room – my dishwasher. The firefighters who attended my house said that dishwashers were a very common cause of fire, something which I didn’t know, and would never have thought. I was in the habit of turning on my dishwasher before bed, something which I know many people do. So, I implore you to look again at the pictures I’ve shared, at my stained bedroom, and imagine the smoke filling the house while you sleep, and I promise you, the pictures do not do justice to just how badly damaged everything is (I have grown fond of saying “however bad you think it is, it’s worse than that”). If you often turn on the dishwasher before bed, consider this a cautionary tale – break the habit, and potentially save yourself the heartache I’m now experiencing, or maybe even your own life.

A more complete gallery of images can be seen below:

 

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I just want my socks

Dear Lufthansa, Sky Handling Partner, and MultiTrip.com,

I’m writing this while sitting in my mother’s house, wearing almost the only pair of socks to my name. The reason for this begins on Friday night, and almost unbelievably, is still continuing now, as I write this, on Tuesday evening.

On Friday night, I returned to Dublin on Lufthansa flight LH982 from Frankfurt Main Airport. Unfortunately, though my friend and I checked in our luggage together, his case arrived in Dublin, but mine decided it would quite like to extend its stay in Frankfurt by a spell, and never showed up on the luggage belt. I made the fun journey to the Sky Handling Partner desk to report the missing luggage, confirmed my contact details and description of the luggage, and headed home, safe in the knowledge that Lufthansa find most missing bags within the first 24 hours (PDF). 24 hours later, Lufthansa hadn’t found my bag, and I became very familiar with the  phrase “Tracing continues, please check back later.”

Since I travel a lot for martial arts trips, and I’m always aware of the dangers of lost or delayed luggage (and broken bones!), I have multi-trip travel insurance with Multitrip.com (in fact, I opted for a premium level of cover to allow for a larger amount of luggage compensation in the case of loss). Once my bag didn’t arrive on Saturday, I knew I’d need some help or provision for some emergency supplies, so I searched around the Multitrip website and eventually found a number to call. I was redirected to a call centre and told that this line was for medical emergencies, and that I’d have to call the claims team on Monday since they’re only open Mon-Fri, 9-5. I was advised that I should buy whatever I need, and then I could send the receipts in for consideration of refund, but they couldn’t confirm I’d be covered for these expenses.

Anyone who follows me on twitter, is friends with me on facebook, or knows me in general will understand why I had to explain to Multitrip why simply “buying whatever I need” wasn’t an option – shortly before my trip to Germany, I had a house fire. Most of my clothes are not currently wearable, and have been deemed impossible to salvage also, so I had recently had to buy lots of replacement emergency clothes, for which I am, of course, still waiting for a refund from my home insurance. Most of these replacement clothes were in the case that had been lost, leaving me in a very difficult position. Multitrip said there was nothing they could do, I would simply have to wait until Monday.

By Sunday, I was feeling pretty worried that my case still hadn’t been located, so I researched my rights regarding delayed luggage, and came across the Montreal Convention. This is a convention which says that airlines must pay compensation for many of the common problems with air travel, such as delayed flights, denied boarding, and delayed luggage. There are lots of resources which explain the convention, so I was reasonably confident of my understanding of it when I called Lufthansa. Lufthansa told me that, of course, they would pay for my emergency expenses, but only 50% of them. When I asked for clarification, I was told that this was part of the Montreal Convention. Huh?

LufthansaTweet

I checked and double-checked the convention, and all of the sites I had found, and none of them had any statement which implied that airline liability was somehow capped at 50%, so I asked Lufthansa on Twitter to clarify. They told me that any refund is in accordance with their liability policy (PDF), which they linked me to.

I checked Lufthansa’s liability policy, and can find no mention of this 50% provision anywhere there either. Though I have since asked Lufthansa several times on twitter, facebook, and over the phone, I have had no explanation for why this 50% policy seems to be known by every call centre operative, but seems to appear nowhere in their own luggage liability documents. In fact, I was told by one representative, who I spoke to on Monday, that anyone in Lufthansa would tell me that it was 50%, but that they couldn’t tell me why. To do that, I’d have to get in touch with Customer Service, and there is no phone number for Customer Service, I may only write to, or email them. The last time I emailed Customer Service (5/9/12), their reply arrived on the 9th of November, 2 months later…

By Monday, my bag still hadn’t arrived, so I called Multitrip to speak to someone about a claim. This is when I found out that my bags are magic. You see, Multitrip defines a “trip” for me as starting when I leave my “home” (place of residence, not country of residence), and finishing only when I return to my “home”. You would imagine, then, if bags didn’t arrive in Dublin Airport, a place which I am not currently resident, that they would be part of my trip – no, my bags are special. Multitrip only care about your bags on the way out to your destination – in other words, there is only cover for a delayed bag on one leg of your trip. If your bag is delayed on the way home, you’re just plain out of luck. So while I must complete trips by returning to my home, my bags need only fly to my destination, and apparently magic themselves home. I informed Multitrip that I would be cancelling my policy and looking elsewhere, and I can only encourage you to check your own travel insurance policy to see if your insurer also doesn’t care what you lose on the way home.

Shortly after calling Multitrip, I received my first call from Lufthansa – they thought they had found my bag. They were going to try to get it on the 5pm flight, and would call me back to let me know if they had managed it. They didn’t call me back. Monday evening came and went, and with absolutely no clothes available to me, I had to go and buy some supplies.

On Tuesday, when my bag still hadn’t arrived, I called Lufthansa. They told me that there was something wrong with my phone, that the number I gave them must have been incorrect, that no one could get through to me. I found this hard to believe, since my phone is almost never switched off, has a voice-mail facility, and had received multiple calls on both Monday and Tuesday without issue. I confirmed my number (it was correct), and gave them an additional number to try (my mum’s phone). When I arrived home from work that afternoon, they hadn’t called my mobile, nor the alternative number I provided them with. I called Lufthansa again, asking why I hadn’t been called, confirming my details again, and was told that someone would call me back soon to arrange delivery. When I asked why I couldn’t just arrange delivery now, Lufthansa said that the delivery company had to speak directly to me before arranging delivery; so the company that apparently couldn’t call me or leave a message needed to call me or leave a message before delivering my luggage. Great.

I waited another hour or two, and then called again to ask why no effort had been made to call me. I was told that it must have been an issue with my phone (again), that my number was wrong (again), and that it was now too late for any deliveries so there was nothing they could do. My luggage was going to spend another night tantalisingly close, but not with me, because apparently I’m harder to get a hold of than the Doctor.

At about 7.30pm that evening, I received a very interesting call from the delightful Sky Handling Partners (seriously, check out that professional looking site – doesn’t it fill you with confidence?) who wanted to arrange for the delivery of my luggage the next day. After a brief conversation about what time the luggage would come at, I asked how they were able to call me this evening, when they had been completely unable to for the past two days. The answer I got was brusque to say the least. I was told once again that my number was wrong (it still wasn’t), and that there was a problem with my phone (there wasn’t, and still isn’t). When I said that my number wasn’t incorrect, and that I had even provided another number as an alternate contact, I was told that they had tried twice on Monday, that they didn’t have the time or resources to keep calling just one passenger over and over, and that they have other airlines to manage, you know! I tried to ask why they didn’t leave a voicemail if they were unable to get through, but I was cut off, and told that there was no point in going through it all again. I was genuinely appalled at the way I was spoken to, so after terminating the call, I called back to ask to speak to Customer Service so that I could register a complaint. I’m reasonably certain that it was the same, extremely rude woman who answered the phone and told me that they don’t have a customer service department, and if I wanted to register a complaint, I’d have to write, so I asked for the email address in order to do so.

This brings us to today – I’m still without my luggage, though hoping that it will arrive today. The way Sky Handling Partner spoke to me, however, gives me no confidence in the planned arrival of my luggage, and makes me worried about what condition my luggage might be in if it ever does arrive. I have submitted a complaint to Lufthansa about the way this has all been handled (Feedback ID FB-ID 21983388 if you’re reading, Lufthansa!), though I’m not confident about the speed of their reply, and I simply won’t accept this 50% provision unless they can show me where it’s mentioned in that linked liability policy they gave me – how can a company insist on being 50% liable for something that’s 100% their mistake? I’m out-of-pocket for more replacement clothes I’ve had to buy to replace the replacement clothes that Lufthansa lost, and with Lufthansa seemingly only willing to pay 50%, I’m likely to be left out-of-pocket in the long-term. I fly often with Lufthansa, and have always thought of them as a very reliable airline, but these current difficulties have made me rethink that position.

So, Lufthansa, Multitrip.com, and Sky Handling Partner – please, I’m not asking for much. I don’t want world peace, or the Hope Diamond, I just want my dirty socks.

 

Update

Lufthansa have replied to my complaint, thankfully a good deal more promptly than last time. Sadly, the answer they have given is still unsatisfactory, because it doesn’t really answer anything at all:

Dear Ms Keane,

Thank you for your online feedback via www.Lufthansa.com

dated 17 June 2013.

We regret that your checked baggage did not arrive following your flight LH982 from Frankfurt to Dublin on 14 June 2013. Please accept our sincerest apologies for this unfortunate occurrence and for any inconvenience caused. In addition, we are sorry to learn about the unfortunate event that happened to your home prior to your trip.

Luggage is normally handled with accuracy and care and the vast majority is processed without incident. Of course, we realise that statistics are of little meaning to a passenger whose luggage has been delayed and regret the less than positive impression gained. According to our records we are glad that your baggage was delivered on 18 June 2013.

In cases of delayed baggage delivery the customer is entitled, to a reasonable extent and taking his/her standard of living in consideration, to buy consumer items and toiletries which correspond to the content of the baggage which is temporarily delayed.

Please allow us to explain that interim purchases are refunded in accordance with the Montreal Convention and with Lufthansa policy which is, as you are aware, 50% for clothing and 100% for undergarments and toiletries. This procedure fulfils the legal rules and regulations. Should you wish the full amount for your interim purchases to be refunded you may send the items of clothing purchased back to us, along with the original receipts, to the address below:

Deutsche Lufthansa AG
P.O.Box 710234
60492 Frankfurt
Germany

Furthermore, in order for us to process your claim, kindly ask you to provide us with your receipt of interim purchase in PDF or JPEG format along with your complete bank details, including IBAN (International Bank Account Number). Thank you for your assistance in this matter.

Emphasis my own there, highlighting the paragraph where they discuss their policy, but still fail to tell me where exactly this policy is specified. I have responded to clarify that, due to issues in Dublin, my bag was not returned to me on the 18th, but is still in Dublin Airport. I have also told them that their policy explanation is not accepted, because that is not the policy which is stated on their site.

Thank you for your reply, but I’m afraid that while I’m aware of your 50% policy, it doesn’t seem to be stated anywhere in the policy documents which you linked to me, and as such, I don’t see how you could possibly apply it. There is no mention of 50% or sending clothes back in the liability document which you linked me, so I do not accept this option as viable or correct.
Additionally, further issues with unreturned phone calls mean that your records are incorrect – my baggage was not returned to me on 18th of June, and instead is still in Dublin Airport today.
I am not asking you to cover exorbitant expenses and I haven’t purchased expensive specialist replacement clothes – I purchased desperately needed socks, underwear, and the cheapest and plainest t-shirt that I could find while I waited for a mistake that I didn’t make to be resolved, and it is simply unacceptable to state that your policy is to only refund 50% when a) the error was not mine, and therefore I am not 50% (nor any percent) responsible for it, and b) it’s not actually stated in your policy. The policy document sent to me is here - If you could be so kind as to highlight for me where on this page the 50% margin is made clear, I’d be delighted to review it.
At the moment, I am not satisfied to close this complaint.

I’ll keep you posted with further updates if and when they come.

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Communicating Science: The sticky MMR nontroversy

It’s 2013, and almost unbelievably, the MMR nontroversy has raised its ugly head once again. Recently, a measles outbreak in Wales has left numerous people ill, and Andrew Wakefield is on the front pages declaring that he was right after all. Isn’t it time we put this one to bed? Just why is this myth so very sticky?

What follows here is a modified version of a paper submitted during my studies of science communication, so you can the language to be a little more academic than usual for this blog. Given that the crux of my argument is that academic language isn’t doing the job when it comes to communicating about the MMR, I’m aware of the irony…

If you want the cliff notes, here they are:

  • Parents aren’t and weren’t stupid to believe that the MMR may have a link to autism, because that was the message that they were given at the time.
  • Parents were led to believe that there was an equal amount of evidence on both sides of the debate, and that there was a sustained debate about the purported link, by multiple media accounts which opted to provide “balance” above and beyond accuracy.
  • Parents didn’t just frivolously decide not to vaccinate – they were more likely to not vaccinate, for example, if they had experience with a family member or friend’s child who had developed autism – they decided based on their experiences with autism, their worries about their children, and their understanding of the perceived debate or controversy within the medical community about the safety of the vaccine.
  • While it was necessary to debunk the false claims about the MMR, doing so by dismissing parents’ fears as irrational, superstitious, or stupid was ineffective, and didn’t address the genuine fears and concerns that parents held. (And really now, how many times have you immediately done a 180 on a deeply held belief because someone called you stupid?)
  • There were a lot of opportunities to communicate with parents, but most of the communications were instead addressed to scientists and doctors who already believed the MMR was safe. These communications weren’t clear to everyone, and weren’t accessible to people who needed information to make a crucial decision.
  • Communications that were aimed at parents often didn’t come from trusted figures, such as their own GP or health worker, but from larger institutions or organisations that the public didn’t know, and given the worries, didn’t trust.
  • And, of course, the important note – all the best available evidence says that (excepting for some side-effects, as with all medicines) the MMR is safe and effective, and that there is no link with autism.

 

It has been reported that rate of measles infections has risen dramatically in countries like the UK and France (Roxby, 2011), and in 2011, the World Health Organisation pushed back its target date for eradication of measles to 2015. The controversy surrounding the MMR vaccine has endured in spite of attempts to refute the bad science which plagues its supporters, and the effects of this are now being felt. Despite the fact that the Wakefield’s original paper (Wakefield et al, 1998) has been widely discredited, and even retracted by the Lancet (the original journal of publication), there is still mistrust among parts of the population in Europe, and further afield, and still people who firmly believe that there is a link between the MMR vaccine and autism.

In 1998, Andrew Wakefield and colleagues published a paper in the Lancet (Wakefield et al, 1998) which linked the measles virus with a bowel disorder, and then later developmental disorders, in the form of autism. At a press conference announcing the paper, however, Wakefield spoke about the MMR vaccine, linking it to autism in a way that was neither proven nor investigated by his initial paper and suggesting that individual vaccines are preferable to the combined MMR vaccine (BBC, 2008). Just one month later, in March 1998, 37 scientific experts gathered to review the evidence, and concluded that there was no evidence to support a connection between the MMR vaccine, but the damage was already done (BBC, 2008).

Though many reports have emphasised the safety of the MMR vaccine (Demicheli et al, 2012), and debunked any potential links between it and the autism, the idea has proved to be a resilient one. It is arguable that referring to the MMR vaccine as controversial lends an undeserved credibility to the suggested autism link by implying that there is still some debate about the safety of the vaccine, or that the link to autism is merely unproven, rather than disproven. Articles some 12 years after the publications of the first refutations still refer to a controversial debate which will be reignited, speculation, and suspicion (Reid, 2012).

The years since Wakefield’s controversial press conference have been characterised by a public mistrust in science, exacerbated further by incidents such as “Climategate” (Holliman, 2011), and Diederik Stapel’s data falsification scandal (Vogel, 2011). In particular, a number of high profile cases involving pharmaceutical companies hiding data (such as Roche, and their Tamiflu data – BMJ Tamiflu Campaign, 2012), or otherwise misleading the public and the medical profession about the effectiveness of their products has further served to deepen the mistrust that some groups feel towards pharmaceutical companies, and this behaviour has undermined the credibility of these companies when it comes to being completely truthful about the effects of their drugs.

Those whose trust has been damaged by these incidents need not look far to find contradictory information regarding the safety of their drugs, and in particular, regarding the MMR vaccine. Groups such as Autism Action Network maintain that the MMR vaccine does cause autism, and collect articles and information which they consider evidence of the vaccine-autism link (Autism Action Network, 2012). Their articles, filled with emotive language, sceptical of the consensus that the vaccine is safe, and painting Andrew Wakefield as a maverick who is taking on the financially motivated pharmaceutical companies, are typical of those found on websites which have sprung up to support Andrew Wakefield and his conclusion that the MMR causes autism.

The 1998 paper which Wakefield and colleagues published was a small case study comprising of just 12 subjects, and the stated subject of the paper was not vaccination, but about digestive disorders and a possible link with developmental disorders in children. Although the study did not examine the any aspect of the vaccination (i.e. the hypothesis that three separate vaccinations are safer than a 3-in-1 vaccination), the vaccine is mentioned in the results, where Wakefield notes that “In eight children, the onset of behavioural problems had been linked, either by the parents or by the child’s physician, with measles, mumps, and rubella vaccination” and “One child (child four) had received monovalent measles vaccine at 15 months, after which his development slowed (confirmed by professional assessors)”.  Though these bold statements are at the heart of the MMR controversy, they were published in a scientific paper in a paid-access journal, meaning that they might have gone unnoticed without the further media attention stirred both by Wakefield, and later by his supporters.

In March 1998, a month after Wakefield’s initial press conference (which had already been the subject of numerous newspaper articles warning about the dangers of the 3-in-1 jab – Guardian, 1998), the Department of Health in the UK convened a Medical Research Council to examine the evidence presented by Wakefield (and others), and to establish how best to advise people regarding the vaccination. The research council consisted of 37 experts in fields such as virology, immunology, child psychiatry, and gastroenterology. The report (DoH, 1998) which they produced concluded that there was no evidence of a link between the MMR vaccine and autism. Their mistake? The report started with the words “Dear doctor”.

With a report produced so soon after the initial press conference, the Department of Health, along with other official bodies, had a chance to effectively communicate to the public, and to engage with them by listening to their fears, and addressing them. Indeed, Goldacre (2008) points out that the initial reporting regarding Wakefield’s paper was quite metered (compared to later coverage), and that it was only in the following years, as prominent figures (such as The Blair family) became involved, that the scandal really began to grow, so there was ample opportunity to engage with the public and ensure that accurate reports about the safety and effectiveness of the vaccine reached the public in such a way that they could understand and appreciate.  Instead, the report they produced seems to have been done with the deficit model of science communication (PUS) firmly in mind (Serpell & Green, 2006). Rather than communicate directly with the public, the primary communication was addressed to doctors, who were to advise parents about the vaccine. The communication is well referenced, and very clear from the point of view of a doctor, but does little to address the fears of parents who were likely to arrive for vaccinations having read countless stories about the dangers of the vaccine. The communication is not one which could be handed to parents themselves to read, but rather is intended as a reference source for a doctor, so that he or she may tell parents that the vaccine is safe. The communication is based on the flawed assumption that parents, and the public in general, are waiting to be “filled up” with the scientific findings about the vaccine, and importantly, assumes that the trust between doctor and patients had not been damaged by a high profile doctor claiming that parents may have harmed their children by vaccinating them. Later studies (Casiday, R et al, 2006) have shown that parental trust in doctors was, in fact, damaged by the MMR scandal, and that, of those surveyed who had rejected the MMR vaccine, almost all (88.7%) felt that their doctors were too dismissive of parents’ concerns about vaccine side effects. In relying on doctors to relay the information, and in not attempting to engage with parents and address their concerns, the Department of Health fell back on the out of date PUS model of communication, and parents failed to respond. The Department of Health failed to realise that merely stating the evidence, and having an authority figure relay the evidence, did not adequately address the concerns raised by worried parents, and this communication failure, in part, allowed for the fears to take hold and grow. Additionally, Petts & Niemeyer (2004) note that many groups of parents, felt that they did not have the opportunity to discuss their concerns properly with their GP, and had only passive or unhelpful relationships with their GP. Combined with their observations that all the groups preferred opportunities for direct discussion of the issues, and information provision from health providers, it is not hard to see how people may have felt that the information regarding MMR safety wasn’t as clear as scientists thought. Even though participants in the study had generally low exposure to official information about the vaccine, all groups were aware of the information being presented in the media, making unprompted references to autism.

Those who supported Wakefield, and his assertions regarding the MMR autism link, were much more proactive about engaging with the public. In 2003, a made-for-tv movie called Hear the Silence dramatised the vaccine controversy, painting Wakefield in a very favourable light. Wakefield is a named character in the movie, the mother of an autistic son is a pastiche of clichés, meeting opposition from her husband, friends, and uncaring and unfeeling doctors and experts, until Dr. Wakefield explains what has happened to her son. The movie is quite heavy handed, suggesting the Wakefield’s work is being covered up because it doesn’t suit drug companies (who make too much money from the vaccinations). As noted by Aaronovitch (2003) reviewing the movie, it is pitched as a “dramatised account of the work of Dr Andrew Wakefield and his colleagues at the Royal Free Hospital in the late 1990s, and a mother’s search for what happened to her child”, the implication being that the movie is, in essence, true, even though it is, in actuality, a highly coloured and distorted piece. Importantly, however, the piece is not a paid-access journal, it is not a restrictive letter, nor is it a closed door conference. The movie portrays Wakefield as a maverick hero, the parents of autistic children as people struggling against an injustice that has been wrought upon them by evil vaccine makers, and it played exceptionally well into the fears and worries of parents in the aftermath of Wakefield’s publications. By engaging with these fears and worries, and hopes of a cure, the movie communicated effectively with parents who had autistic children, parents who were worried about the vaccine. Though the movie was inaccurate, biased, and mostly not factual, the movie engaged people in a way which the Department of Health had failed to do.

By the time Hear the Silence was broadcast, several papers had been published refuting the claims made by Andrew Wakefield, yet Goldacre (2008) notes that less than one third of all of the broadsheet articles on the MMR vaccine in 2002 referred to the growing body of evidence demonstrating the safety of the vaccine. Just 11% of the articles mentioned that the MMR was (and is) regarded as safe in the 90 other countries it is used in. Goldacre criticises not only the media, but the scientists who, with no media training, were unprepared to counter the emotional anecdotes and sensationalist press. With poor public engagement and communication by the scientists, the studies which refuted the MMR vaccine’s connection with autism were lost among stories by non-science reporters, with comments from celebrities rather than specialists, and those celebrities had plenty to say.

Some celebrities have contributed significantly to the controversy surrounding the MMR, and the media, perhaps in a misguided attempt at impartiality (Ward, 2008), often seek to “balance” a piece on the vaccine by including both an expert (typically a doctor, scientist, or other qualified person) and someone who holds a different opinion (concerned celebrities, parents of an autistic child, leader of an anti-vaccination action group, etc.).  Actress Jenny McCarthy is a vocal supporter of the anti-vaccination movement, and claims that her son developed autism as a result of the vaccine (and has subsequently been cured by a number of alternative therapies for autism). Despite her lack of medical qualifications, McCarthy’s opinion on the vaccine may hold more weight than scientists give her credit for, with a recent survey finding that approximately one quarter of US parents trust the advice of a celebrity about vaccinations (Time, 2011). The same survey showed that, while most parents (76%) do trust their doctors, a significant majority (65%) also trusted parents who said that their children had been harmed by vaccinations. By juxtaposing celebrities like McCarthy with legitimate experts, the media have not only given those who are anti-vaccination a platform, but they have also given them a boost in credibility by association, and one which they do not deserve. Quoting Offit, Gross (2009) notes that the media have helped to perpetuate vaccine myths, in presenting two sides of an issue with equal time and weight afforded, even when only one side has supporting evidence.

In 2003, Verstraeten et al had completed a study of over 140,000 children, concluding that there was no link between vaccines and autism (in particular, the vaccine preservative thimerosal, thought by some to cause autism – the preservative was removed as a precautionaery measure, even though it contains ethylmercury, which is removed relatively quickly from the body, and not methylmercury, which bioaccumulates and has been linked with developmental defecits in children). By 2004, the Institute of Medicine had finished a review of over 200 studies for any possible link between autism and vaccines, and unanimously found that there was no evidence of a causal relationship between the two. The myth persists, Kaufman (2007) argues, because of the volume of conflicting and contrasting information available. With many anti-vaccination sites presenting themselves as legitimate sources of scientific information, many parents see expert advice and conclusions as just one more opinion on the issue, assigning equal weight to these opinions as those found on the anti-vaccination sites, perhaps taking their cues from the ever-present “balance” mantra which appears to have stuck firmly with science journalists.

The safety of the MMR has been verified by numerous studies, and this message has been well communicated to the professional audience of doctors, nurses, and healthcare professionals, but it’s clear that while this scientific evidence may be persuasive to some groups of people, it may not be as effective at persuading the true target audience – parents who will decide whether or not to vaccinate their children. It is comforting to assume that facts “speak for themselves”, but this fallacy ignores the greater political, social, and economic factors and consequences of a parent’s decision.

Pattison (2001) notes that the kind of composite knowledge held by ordinary people, founded in a more complex view of reality than that experienced by scientists, is often perceived by scientists as being superstitious or irrational, and something which needs to be destroyed. He points out that ‘scientists must take care not to treat fear and reservation as ignorance and then try to destroy it with a blunt “rational” instrument’. This oversimplified notion of superstition as a guiding force for parental decisions regarding the MMR vaccine does not acknowledge the perceived risks that parents must weigh when deciding to vaccinate. Parents’ decisions on whether to vaccinate their children were not wholly informed by the scientific evidence surrounding the safety of the MMR vaccine – McMurray et al (2004) found that their decisions were informed and affected more significantly by personal experience than by scientific evidence, and that the parents perceived the risk and long term effects of autism to be much worse than the risks associated with measles, mumps, or rubella. Those parents who chose not to vaccinate their children made the choice because they knew a child or children with autism; by contrast, parents who had experienced the long term negative effects of measles, mumps, and rubella were more likely to vaccinate their children. To merely dismiss the experiences of the parents who chose not to vaccinate their children is to trivialise the concerns of parents whose fear and mistrust of the official pronouncements of safety is founded not entirely in superstition, but in their own experiences and understanding of the information communicated to them.

A significant contributing factor to the understanding of the information communicated to the public regarding the scare was the journalistic presentation of the information. In their report “Towards a better map: Science, the public and the media”, Hargreaves et al (2003), showed that it is incorrect to assume that parents were unaware of the information regarding the safety of the MMR vaccination, but that the way it was communicated did cause confusion. Hargreaves et al performed surveys which aimed to find out how opinions and understanding of the MMR controversy (and other topical science issues) changed over a period of time (approximately 7.5 months), and examined this in context with the reporting on the story. In their first survey, they found that 39% of respondents incorrectly assumed that there was an equal amount of evidence on both sides of the debate, and in their second survey, this number had risen to 53% of respondents. The application of the journalistic norm of balance is likely to have played a part in this, as information presented as “both sides of the story” did not make clear the differences in the quality of the information and, as noted by Dixon & Clarke (2013) may have lead readers to infer equal status or expertise to the conflicting views. An additional, interesting discovery from the survey was the fact that 49% of people stated that their main reason for feeling confused about scientific issues in the news was the complexity of the science issues themselves.

Bellaby (2003) also notes that parents’ behaviour regarding the MMR is not necessarily irrational – pointing out that challenge to authority (including scientific authority) is not unexpected in a healthy democracy, and that the way to deal with such challenges is not just about disseminating the best information, but about two way communication and a transparency in the presentation of evidence. Despite these observations, the message today is the same as it was in 1998, when Wakefield first claimed to have found something which caused autism – parents get their information from a wide range of sources (Time, 2011), and scientists are hard-pressed to compete with the emotional stories and appeals of parents struggling with autistic children and no hope of a cure. Baker (2008) notes that the studies which appeal most to scientists, those which are the most “elegant” are likely also the most difficult for a parent to understand, and that scientists need to find some way to make these dry, detached studies as compelling as the anecdotes and small case studies presented to support the link between autism and the MMR vaccine.

Covolo et al (2013) note that public perception of presumed risk associated with influenza vaccines was high, and that the uptake was not optimal, suggesting that there have been lasting effects from the MMR controversy in the way people perceive vaccines and public health programs. Scientists need to acknowledge the social context in which parents receive and understand the information they disseminate, and not treat any confusion or concerns as something to merely be quashed.

Often, when a new study which show something groundbreaking, or something which is in sharp contrast to the current understanding of something, it is because a mistake has been made. Whether that mistake is intentional or accidental, the process of peer-review, other scientists repeating the work and not achieving the same results, usually shows up the mistake, and the result is published in a journal. Though this self-correction is at the heart of the scientific method, it is often misrepresented by the media, and thus, poorly understood by the public. A fairly common occurrence (the publication of a paper, and the further publication of a paper which disputes or rebuffs the findings) turns into headlines which first read that “coffee causes cancer”, only to read “coffee doesn’t cause cancer” or “coffee may prevent cancer” mere weeks later, and it serves to fuel the mistrust that the public has for science in the wake of its larger and more public scandals (climategate, Vogel, etc.). Though this self-correction is crucial, it is portrayed, and thus appears, as if “science” cannot make up its mind, and can’t be trusted to get things right. Though it would serve their reader well if they did so, many science journalists are simply not sceptical enough of the press releases which land on their desks. As noted astronomer Carl Sagan says, “extraordinary claims require extraordinary proof”, and while waiting for that proof might ensure more accurate articles, it might also mean fewer revenue-increasing exclusives, scare stories, or scandals.

While it is easy to lay much of the blame for the MMR controversy at the feet of the media, scientists are not without blame. Offit and Coffin (2003) note that scientists need to change the way they communicate in order to take account of, and counteract, the way that the claims are reported. Though facts may speak for themselves in a scientific context, simply providing these facts, and claiming that if the public does not understand them that it is a fault with the media, or with the public themselves, is a reiteration of the deficit model (Mikulak, 2011), and it’s clear that it is ineffective. Time (and declining immunisation rates, along with climbing infection rates) has shown that it is not enough to conduct studies which refute Wakefield’s claims and publish the results in a press release; the story must be made compelling, emotional, and personal, as well as informative. Many scientists, however, seem to feel that it is the media who are at fault in the MMR controversy, claiming that reporting of the MMR story is what drove parents to avoid vaccinating their children (Speers and Lewis, 2004; Mikulak, 2011), but the failures in communication lie not just with the journalists, but also with the scientists who have not engaged with the public, and who seem often to base their communications on the out-moded PUS (public understanding of science) or deficit model of communication. Offit (Gross 2009) wishes that scientists would “do a better job of communicating theoretical risk and the difference between coincidence and causation. Once you raise the notion of a possibility of harm, he says, ‘it’s hard for people to get that notion out of their head.’”

I believe that, in cleaving to the PUS model of communication, in not engaging with the public and recognising and understanding the source of their concerns, and in hoping that merely providing some papers which refute Wakefield’s claims will somehow fill the gaps in knowledge and correct the deficit in public knowledge regarding MMR, scientists are as responsible as the journalists for the continuing MMR controversy. The damage done by the MMR controversy has led the public to change the way they consume scientific information, and to doubt previously trusted sources, which has manifested as doubt in other vaccines, and damaged public trust in health authorities. The health and wellbeing of children is a highly emotive, often politically volatile area, and while the media led with impassioned and heart-rending stories of damaged children, science responded with epidemiological studies.

 

References:

  • Aaronovitch, D. (2003) A travesty of Truth. The Observer. Available from: http://www.guardian.co.uk/society/2003/dec/14/broadcasting.science
  • Autism Action Network (2012). Vaccine Court: CA Boy has Autism from MMR. Available from: http://capwiz.com/a-champ/issues/alert/?alertid=62329506&queueid=[capwiz:queue_id]
  • Baker J (2008) Mercury, vaccines, and autism: One controversy, three histories. Am J Public Health 9: 244–253
  • BBC (2008). MMR research timeline. Available from: http://news.bbc.co.uk/2/hi/health/1808956.stm
  • Bellaby, P (2003), ‘Communication and miscommunication of risk: understanding UK parents’ attitudes to combined MMR vaccination’, BMJ: British Medical Journal (International Edition), 327, 7417, pp. 725-728
  • BMJ Tamiflu Campaign (2012). Available from: http://www.bmj.com/tamiflu
  • Casiday, R, Cresswell, T, Wilson, D, & Panter-Brick, C n.d., (2006) ‘A survey of UK parental attitudes to the MMR vaccine and trust in medical authority’, Vaccine, 24, 2, pp. 177-184
  • Covolo, L, Mascaretti, S, Caruana, A, Orizio, G, Caimi, L, & Gelatti, U (2013), ‘How has the flu virus infected the Web? 2010 influenza and vaccine information available on the Internet’, BMC Public Health, 13, 1, pp. 1-10
  • Demicheli V, Rivetti A, Debalini MG, Di Pietrantonj C (2012). “Vaccines for measles, mumps and rubella in children”. Cochrane Database Syst Rev 2: CD004407
  • Department of Health (1998) Measles, Measles Mumps Rubella (MMR) Vaccine, Crohn’s Disease and Autism. Available from: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4013397.pdf
  • Dixon, G, & Clarke, C (2013), ‘The effect of falsely balanced reporting of the autism–vaccine controversy on vaccine safety perceptions and behavioral intentions’, Health Education Research, 28, 2, pp. 352-359
  • Goldacre, B (2008). The Media’s MMR Hoax (extract from Bad Science). Available from: http://www.badscience.net/2008/08/the-medias-mmr-hoax/
  • Gross L (2009) A Broken Trust: Lessons from the Vaccine–Autism Wars. PLoS Biol 7(5): e1000114
  • The Guardian, 27 February 1998, “Alert over child jabs”
  • Hargreaves, I., Lewis, J. and Speers, T. (2003) ‘Towards a better map: Science, the public and the media’, Economic and Social Research Council.
  • Holliman, R. (2011). Advocacy in the tail: Exploring the implications of ‘climategate’ for science journalism and public debate in the digital age. Journalism 12(7), 832-846
  • Institute of Medicine. (2004) Immunization safety review: Vaccines and autism. Available from :http://www.iom.edu/CMS/3793/4705/20155.a​spx
  • Jackson, C, Cheater, F, Harrison, W, Peacock, R, Bekker, H, West, R, & Leese, B 2011, ‘Randomised cluster trial to support informed parental decision-making for the MMR vaccine’, BMC Public Health, 11, 1, pp. 475-485
  • Kaufman S.R, Nov. 2007 An event in the history of thought: Autism and vaccine safety doubt. Paper presented at the American Anthropological Association conference, Washington, DC.
  • Mikulak, A 2011, ‘Mismatches between ‘Scientific’ and ‘Non-Scientific’ Ways of Knowing and Their Contributions to Public Understanding of Science’, Integrative Psychological & Behavioral Science, 45, 2, pp. 201-215
  • Offit, P. (2008) Autism’s False Prophets: Bad science, risky medicine, and the search for a cure.
  • Offit, P, & Coffin, S n.d., (2003) ‘Communicating science to the public: MMR vaccine and autism’, Vaccine, 22, 1, pp. 1-6
  • Pattison, S. (2001) ‘Dealing with uncertainty’, British Medical Journal, 323, p. 840.
  • Petts, J, & Niemeyer, S (2004), ‘Health risk communication and amplification: learning from the MMR vaccination controversy’, Health, Risk & Society, 6, 1, pp. 7-23
  • Reid, S. (2012). MMR: A mother’s victory. The vast majority of doctors say there is no link between the triple jab and autism, but could an Italian court case reignite this controversial debate? Daily Mail. Available from: http://www.dailymail.co.uk/news/article-2160054/MMR-A-mothers-victory-The-vast-majority-doctors-say-link-triple-jab-autism-Italian-court-case-reignite-controversial-debate.html
  • Roxby, P. (2011, May 13). Measles outbreak warning as cases rise in Europe and UK. Bbc.co.uk. Available from: http://www.bbc.co.uk/news/health-13378119
  • Serpell, L., & Green, J. (2006). Parental decision-making in childhood vaccination. Vaccine, 24, 4041–4046
  • Speers, T., & Lewis, J. (2004). Journalists and jabs: Media coverage of the MMR vaccine. Communication & Medicine, 1, 171–181.
  • Time (2011). Jenny McCarthy, Vaccine Expert? A Quarter of Parents Trust Celebrities. Available from: http://healthland.time.com/2011/04/26/jenny-mccarthy-vaccine-expert-a-quarter-of-parents-trust-celebrities/
  • Verstraeten T, Davis RL, DeStefano F, Lieu TA, Rhodes PH, et al. (2003) Safety of thimerosal-containing vaccines: a two-phased study of computerized health maintenance organization databases. Pediatrics 112: 1039–1048
  • Vogel, G. (2011, October 31). Report: Dutch ‘Lord of the Data’ Forged Dozens of Studies. Science, ScienceInsider. Available from: http://news.sciencemag.org/scienceinsider/2011/10/report-dutch-lord-of-the-data-fo.html
  • Ward, B. (2008). Finding and projecting the voice of science and engineering. Prepared for Science in society: A Career and Professional Development Course, held at the Open University’s Walton Hall Campus, 18-20 February 2008.
  • Wakefield, A, Murch, S, & Anthony, A n.d.,(1998) ‘Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children (Retraction of vol 351, pg 637, 1998)’, Lancet, 375, 9713, p. 445
  • Wakefield, AJ. (2002), ‘Enterocolitis, autism and measles virus’, Molecular Psychiatry, 7, 3, p. 44
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Ireland’s Shame

In 1992, as a result of being repeatedly raped, a 14 year old girl became pregnant. Her family reported the rape, and resulting pregnancy, and made the decision to travel to the UK so that the girl could have an abortion. Aware that there is a possible need, the family ask the Gardaí if DNA evidence from the foetus will be required, and the question was referred upwards to the Director of Public Prosecutions (DPP), and further again to the then Attorney General Harry Whelehan, who, as you might expect, immediately replied to the family to assuage their fears, and reassured them in this difficult time.

Except that this is Ireland, a “Catholic country”, and that’s not at all what Whelehan did. Instead, he demanded that they return to Ireland, without harming the foetus, because a 1983 constitutional amendment reaffirmed the illegality of abortion in Ireland, and sought to further prevent any possible change to allow abortion, by stating that “The State acknowledges the right to life of the unborn and, with due regard to the equal right to life of the mother, guarantees in its laws to respect, and, as far as practicable, by its laws to defend and vindicate that right.” An initial appeal to the High Court proved unsuccessful  because the judge in question ruled that the threat to the life of the unborn was “real and imminent” and the the constitution required the the life of the unborn be protected from this threat. The family appealed, their daughter suicidal at the prospect of having to carry the child to term, and eventually, Whelehan’s decision was overturned in the Supreme Court, with the judges recognising that “a woman had a right to an abortion under Article 40.3.3 of the Irish Constitution if there was “a real and substantial risk” to her life.” The girl miscarried shortly after the judgement.

The X case was resolved in 1992, and since then, there has been a need for legislation to allow abortions to be performed if there is a real and substantial risk to the life of the mother. As yet, almost 20 years later, there is no legislation. Ignoring this need for legislation has led to further cases where women have been put in difficult situations, needing to travel outside the country, and finding themselves unable to receive advice regarding abortion. In all cases, the women needed follow-up medical care, and either did not attend due to uncertainty about the legalities of abortion, or were failed by medical staff who seemed to ingore the fact that they had had abortions.

Today, we learned about Savita Halappanavar, another woman who has been failed by the unclear abortion laws and lack of legislation regarding threats to the life and health of the mother. Her case goes beyond a need for travel, or the inaccessibility of information and follow-up medical care regarding abortion, because on October 28th, as a result of being denied a termination, Savita died.

Savita Halappanavar presented to University Hospital Galway on October 21st, when she was 17 weeks pregnant. She was suffering from back pain, and after examination, was found to be miscarrying. The doctors informed Savita, and her husband Praveen, that her cervix was dilated  that she was leaking amniotic fluid, and that the baby would not survive. The doctors also told them that the miscarriage would be over in a few hours. What followed was three days of severe pain, with Savita exposed to life threatening infection as her cervix remained dilated. After the first day, when it became clear that the miscarriage was not going to be over in a few hours, she asked for a termination. She was informed that they would not carry out the termination, because the foetal heartbeat was still present, and that “this is a Catholic country”.

Savita spent 2 more days in agony, and extremely susceptible to infection, before the foetal heartbeat finally stopped. Only at this point was the foetus removed, and although the procedure was successful  it was far too late for Savita. She died, a week after presenting at the hospital, of septicaemia which had been documented “ante-mortem”, i.e. before her death, and E.Coli (ESBL) infection.  Though Savita had pleaded with the doctors to help her, once it became clear they could not save the baby, her husband says she was repeatedly told that there was nothing they could do because the foetus’ heart was still beating. When told that it was the law, and that this was a Catholic country, Savita pointed out that she was neither Irish nor Catholic, but the doctors maintained that there was nothing they could do, and so, while Savita succumbed to infection, the doctors did nothing.

Earlier this year, Cardinal Seán Brady said that the Chruch would lobby the government if there was any attempt to legislate for abortion, and indeed, on the same days as Savita’s story appeared in The Irish Times, a letter from the Bishop of Killala, John Fleming, reminds us that “ for Catholics is that the life of the unborn can never be taken intentionally”, and that “Ireland, without abortion, is recognised as one of the safest countries in the world to be a pregnant mother.” Fleming also pays lip service to that old chestnut that the law in Ireland wouldn’t prevent a mother getting the care she needed, reminding us that even though we should “Choose Life!”, that “Clearly, if the life of the mother is threatened, by illness or some other medical condition, the care provided by medical professionals will make sure that she receives all the medical care needed.”

Bishop Fleming needn’t worry. Rather than come down on any one side of the abortion debate, our elected officials have been avoiding the matter for over 20 years now, and seem determined to continue doing so. Referring to the impending publication of a report regarding Ireland’s abortion legislation, recently one minister said “I hope that report doesn’t come for 10 years, but it’s coming and we’re going to have to deal with it,” and for me, this neatly encapsulates how our elected officials feel about this issue. Rather than fighting for women’s rights, or attempting to finally resolve the decades long outstanding legislation, they hope that the report doesn’t come, so that they don’t have to deal with it. Rather than seeing the report as an opportunity to codify something which has been missing from our law for an embarrassingly long period of time, they see it as something that they are stuck with, that they must reluctantly deal with.

Abortion in Ireland isn’t a right, and it isn’t a privilege. It isn’t even a choice. It’s a political football to be kicked around at times like these, a hot potato that no party wants to be left holding. The cowardice of our elected officials in ignoring the 1992 X judgement, in hoping that the problem would simply go away if ignored for long enough, is something which should not be forgotten. The A, B, and C cases, the X case, and now Savita; all victims of our compassionate, humane, “Catholic” country.

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Balancing act

What would you do if someone claimed that, because of “geopathic stress”, moving your bed could be the key to avoiding cancer? Well, if you’re the Irish Independent, you give that someone the most prominent picture and article space in a section about cancer prevention and treatment, with the bold headline “The truth about avoiding cancer”.

The man in the picture holding the magical pieces of wire is Brendan Murphy, and the article is little more than an advertising piece for his company, Positive Energy. Though the piece starts promisingly by pointing out that geopathic stress is “an area that is still open to debate”, sadly, it fails to deliver that debate. Instead, the reader is treated to a number of claims with a dearth of supporting evidence.

  • By ‘dousing’ (an ancient practice of using two wires to find underground waterways) Brendan can identify where water runs under a house and has found a strong correlation between that and illness.
  • If you’re constantly waking tired and unrefreshed it could be a sign that you’re sleeping over geopathic stress.
  • There’s a growing interest in how geopathic stress or ‘sick building syndrome’ affects health, with planners in several countries now considering geopathic stress lines when building houses. 
  • On the basis that electromagnetic waves affect the body’s ability to restore itself during sleep, Brendan advises also keeping mobile phones and electricity boxes an arm’s length from the bed – as well as keeping WiFI switched off at night.

The piece neither provides, nor suggests where you might find evidence to support the claims about Murphy’s dousing abilities (or anybody’s ability to accurately douse), or why electricity boxes and wifi might prevent your body from “restoring itself”, and if you found yourself wondering what planners are interested in geopathic stress lines, and how they could possible hope to avoid them all if they are as prevalent as claimed, you are not alone. A quick search through any academic database will cure what ails you – geopathic stress turning up only in low quality journals and those that focus on complementary and alternative therapies. Whatever strong correlations Murphy claims to have found between illnesses and these imaginary stress lines, it certainly hasn’t been documented in any research papers.

Continuing to largely ignore the seemingly fictional nature of the piece, the author concludes that there has been “little investigation into the area, but if something as small as changing where you sleep, or moving your phone, might impact on your health it could be worth thinking about.” A statement of equal legitimacy might be “there has been little investigation into the area of alien-induced head colds, but if something as small as wearing these protective alien UFO blocking nose plugs might impact on your health, it could be worth thinking about”.

Further down the page, nestled between largely sensible articles from an Irish Cancer Society representative and a dietician, Dr. Aileen O’Kane, now an Ayurvedic practitioner tells us that “if the digestive system is overtaxed the immune system is compromised and can’t gobble up the cancer cells that the body is always producing, the way it normally would”, and in a nod to the thoroughly debunked “alkaline diet” craze, that ”Many people who have cancer have excess acid in the body.” The conclusion, highlighted for you in a section of its own, is to “keep acidic foods to a minimum”. O’Kane believes that any illness, including cancer, is the body’s warning sign that our lives are out of balance.

Our lives aren’t the only things suffering from a lack of balance – increasingly, in the name of journalistic balance, legitimate and accurate information is overshadowed by misleading quotes and scaremongering by those brought in to “balance” the piece. It’s one thing to include dissenting opinions when discussing the latest trend in fashionable shoes, or whether some movie lives up to the hype, but medical science isn’t about which opinion is more popular or compelling, it’s about evidence.

These articles might pay lip service to the lack of evidence by saying things like “still up for debate” or “Dr. Someone  believes that”, but placing these articles next to pieces by legitimate medical professionals lends them a degree of credibility which they often don’t deserve. When articles like these are published, the trust that is placed in well-respected and nationally read newspapers such as The Irish Independent is extended to the people who make claims about alternative therapies. They are claims that shouldn’t be trusted, claims for which they should have to provide evidence – but the mere fact of publication often means they don’t have to.

Every time an author discusses serious medical conditions like cancer, and decides that appearing to be “neutral” is more important than reporting accurately, they perpetuate the idea that alternative and unproven therapies are as legitimate as proven ones, and that when it comes to treating these conditions, everyone’s opinion is equal, even if those opinions come with no pertinent training, no supporting evidence, or an eye-watering price tag. Encouraging people to “think about” these alleged cancer causes and prevention methods essentially encourages baseless worry, reaching down to a fear of terminal illness and death that we all possess, and as no effort is made to draw a distinction between the sensible advice (eat a healthy, varied diet) and the more ridiculous advice (magical invisible lines under your bed), the overall impression one is left with is that each of these “truths” about cancer prevention are equally valid. Alternative therapies are alternative because they have either not been proved to work, or have been proven not to work, and including these therapies, simply so that you can call your piece balanced is irresponsible to the point of dangerous – a lesson which The Independent sorely needs to learn.

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Scapegoats and quackery

““The search for a scapegoat is the easiest of all hunting expeditions.” – Dwight D. Eisenhower

Quack clinics are often quick to claim their victories, with the smallest improvement in a condition being hailed as irrefutable proof that the treatment works. When the treatment fails, however, and there is blame to be apportioned, it seems that everyone and everything but the treatment are to be targeted.

A few days ago, we heard about Olivia Downie, who sadly has become so ill that she is unlikely to live. Her family raised money to send her to the Hope4Cancer Institute in Tijuana, Mexico, so that she could receive Sono-Photo Dynamic Therapy. The unproven  treatment uses light and sound to fight cancer, and is not generally accepted as an effective treatment for cancer. The expense, difficulty, and stress of travelling to Mexico have been compounded for the family, as the treatment has not worked, and Olivia has deteriorated significantly. She is now too unwell to fly home without medical assistance, and will need a chartered flight with specialist care if she is to be brought home before she dies.

This is a story which is all too familiar for many who read about alternative cancer treatments – though we are told at great length about the alleged successes of the treatment, more often than not, a family spends all that they have only to be separated from their loved one, and to potentially see them die alone in a foreign country. Several articles appeared today, detailing the fears of her parents that her life support machines will be turned off, because of delays in paying their medical bills. Surprisingly, instead of criticising the clinic for what is despicable, bullying behaviour, the blame has been placed at the feet of NatWest, saying that their banking problems, which caused delayed payments and account issues, are threatening Olivia’s life.

The Daily Mail opens their article by talking about the “innovative”,”life-saving”, “specialised” treatment, and gives no mention to its unproven nature (barely mentioning the fact that the treatment hasn’t worked). Later, we are told that the hospital deny making this threat, but that denial has come after a rushed payment was arranged by the family at the weekend.

 

 

The Daily Mail article quotes the mother as she spoke to the Telegraph, and the article which appears in the Telegraph is similarly uncritical of the clinic and the treatment, and eager to lay the blame with the banks.

 

The Telegraph is happy to tell us about the “life-saving” treatment which Olivia received at the Mexico clinic, and though Olivia’s mother, Linza, is quoted as saying that you “can’t blame the banks. It was bad timing, it was one of those things”, the Telegraph (among others) seem to be quite happy to blame the bank for threats to Olivia’s life support machines. In fact, as more articles appear, the focus seems to be on the role the NatWest problems may have played in the transfer of funds, and on nothing else.

I can only imagine how difficult and upsetting this time must be for Olivia’s family, but this doesn’t excuse the lazy, uncritical reporting which will almost certainly draw more attention to the clinic. The treatment doesn’t work, and it hasn’t been properly tested or proven. Andy Lewis blogged about Olivia, including a video which shows the doctors promising results that they cannot hope to achieve, lying about the effects of chemotherapy, and the effectiveness of their treatment, and articles discussing the treatment have been at best uncritical, and at worst, complimentary.

When a lone maverick sets up a clinic, because he or she has been persecuted by the mainstream medical community and Big Pharma, because they have a simple, non-toxic cure for all cancers, it all sounds a little bit too good to be true, and that’s almost invariably because it’s not true at all. The Hope4Cancer clinic is another example of this, and once again, the uncritical reporting serves only to harm the public. NatWest haven’t threatened the life of this little girl, the clinic which promised a cure based on wishes and dreams, and then threatened to pull the plug for purely mercenary reasons are the ones who should be at the receiving end of any backlash forthcoming, as they alone are responsible for what has happened.

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Dad

Don’t think of it as dying, said Death. Just think of it as leaving early to avoid the rush.”  - Terry Pratchett, Good Omens

A little over a month ago, on April 13th, my dad died. Really though, this story begins much earlier than that. In October 2010, my dad was first diagnosed with cancer, Non-Hodgkin’s Lymphoma, after finding a lump in his throat. We were told that it was very treatable, even curable, and he began treatment (CHOP). When he began to lose his hair, I shaved his head. He seemed to respond well to the treatment, and at the end of March, he was given the all clear. Unfortunately, after just 5 months in remission, the cancer returned. It had grown and was continuing to grow quite aggressively, and had spread beyond the initial lymph nodes. So, in September 2011, treatment resumed again. The cancer seemed to respond to the treatments (ICE, GemCis, and then Velcade), but only for a while before it began growing again – it was chemo-resistant and very difficult to treat. The stem-cell transplant that we had hoped would take place in January was postponed, as the doctors simply couldn’t clear his blood of the cancer cells.

Dad began to spend increasing amounts of time in the hospital, spending some nights there virtually every week in March. On April 7th, my dad turned 56. We celebrated his birthday, even though he was feeling quite unwell, and thrush in his throat (a complication of his immunocompromised state) made it difficult for him to eat and drink anything. He returned to the hospital on April 10th, and was diagnosed with pneumonia. He saw his oncologist on the morning of April 11th. The doctors explained that they had done everything they could, but that they could not see a way to beat the cancer. They intended to treat the pneumonia, get him out of hospital, and make sure his remaining time was a easy as possible. We thought that we had a few months of time left. We visited that night, and the following evening, and though a little sleepy due to the pain medication for his throat, dad was able to talk to us all.

On the morning of April 13th, when we called the hospital to check in as usual, the nurses told us that dad had deteriorated quite a lot overnight. We all went into the hospital, and spoke to the nurses, asking them to address the elephant in the room: was this it? They told us that he had deteriorated very sharply, and that they were not going to be able to cure the pneumonia either. We asked for an idea of time, and they guessed at a few days. About an hour and a half later, dad simply opened his eyes and stopped breathing.

The days that followed were difficult, but we were greatly helped by friends and neighbours (who were also dealing with another tragedy – the death of our friend and neighbour, who passed away about 30 minutes after my dad). The two funerals took place, on the 17th and 18th of April, and our community rallied together to support each other, and both families, in a way which makes me proud to be a part of the neighbourhood. And then, slowly, we tried to return to our lives.

In the weeks since, I have thought often about my own beliefs. As I’m not religious, and have no belief in an afterlife, there is no comfort for me in the idea that I will meet dad again when I die. I wondered whether, at a time like this, someone with no faith might feel hopeless or lonely, but that hasn’t been the case. In the deep sadness which has underpinned every action in the previous weeks, I have drawn comfort from friends and family, from the wonderful moments of happiness as we remembered dad in all of his grumpy, practical joking, leaving too early for everything, tv-hogging glory. I have been touched by realising how many people cared about my dad and my family, by seeing our very large local church filled to capacity and then some, by the constant hum of activity in our house as people came to see us and say goodbye to dad. I have found solace in all of the messages that I have received via twitter and facebook, from people who have simply been moved by dad’s passing.

I have also thought a lot about my stance on superstitions, psychics, alternative medicine, and my general efforts to think critically about these things, and I’d like to share some observations. Dad died on April 13th 2012, and anyone who is paying attention will note that that was a Friday. Though that particular Friday the 13th will remain as a beacon in my memory, I have no greater fear of Friday the 13th, the number 13, or any associated superstitions than I did before my dad died. Friday the 13th was not responsible for my dad’s death, any more than Saturday the 14th would have been, if he had died 24 hours later.

Dad died of cancer, or more specifically, of pneumonia (and other conditions) associated with his immunocompromised state and cancer. I still believe that the doctors did everything possible to cure him, and that we would not have been helped by alternative medicine. Since dad’s death, I have watched several video advertisements, read articles, and generally been exposed to a number of alternative cancer cures. Though I am upset, and emotionally fragile, I am still not convinced that switching to an entirely plant based diet, having a daily coffee enema, drinking litres of fruit juice, taking antineoplastons, or any of these other treatments would have cured my dad, and if I was diagnosed tomorrow, I wouldn’t choose them for myself either. I still think that people who prey on the ill and vulnerable are wretched, and dad’s death hasn’t changed that.

In the last week of dad’s life, we were told first that he would have months, and then that he had days, perhaps a week. In truth, once he deteriorated, we had only a few hours. This hasn’t shattered my trust in the institution of modern medicine, but rather, has highlighted how, sometimes, patients and conditions behave in unexpected ways. Though stories of people outliving their expected 6 months are often told, there are, I’m sure, stories like ours to counterbalance that. As dad was known for leaving far too early for everything (in case there was traffic, a flat tire, a road closure, etc.) I’d like to think that he just didn’t want to delay! I would, of course, have liked for dad to be one of those stories, and for him to have amazed doctors by living beyond their expectations or making a recovery, but it simply didn’t happen, and truthfully, another 6 months would have been unfair if he would have had to endure the pain and general difficulties that he saw in the last week of his life.

In the past, it has been said to me that a critical thinking position will crumble when the issue is personal – i.e. when it is one’s own family member (or someone to whom you have a strong emotional connection) who is ill, rather than someone you’re reading about in an article. The past month has been one of the most emotionally charged and challenging periods of my life, and I believe, a fair test of this statement. Having tested the theory, I still don’t believe that having kids, experiencing death, or any other emotional upheaval will make me suddenly change the way I think, place less value on rational thought, or make me regret trusting conventional medicine. Or as I like to call it, medicine.

My dad taught me to think and stand up for myself, and made sure I knew that when something appeared to be too good to be true, that it probably was. Even though our lives are changed forever because dad is gone, I’m still me, and I still think the way I did before.

Dad had long maintained that, when he died, he wanted “Always Look on the Bright Side of Life” played at his funeral, and we couldn’t but honour that request. A memory which will stay with me forever is laughing through my tears as I heard the congregation whistling along, and I know that dad would have been amused indeed. I’m grateful that we have so many wonderful memories to choose from when we want to remember dad, and they’ll continue to help us smile when things are jolly rotten.

For life is quite absurd
And death’s the final word
You must always face the curtain with a bow.
Forget about your sin – give the audience a grin
Enjoy it – it’s your last chance anyhow

 

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Burzynski and Patient Choice

It’s difficult to know where to start a post like this, perhaps because I most often start my posts by noting something which has been asserted as fact, and then proceed to debunk it. This post is about Burzynski, a subject which is becoming increasingly hard to write about, because two issues – namely the validity of the treatment (incorporating Burzynski’s practices, honesty, publication, etc), and the patients being treated – have become so entangled that it is difficult to discuss one without treading on ground covered by the other. Last week, after being contacted by a tweeter who asked me some leading questions about Burzynski, I tweeted the following messages:

 

This sparked a series of messages (excerpts of this particular exchange can be seen here, many examples can be seen by simply searching for #Burzynski on Twitter) the general form of which have become par for the course for any people critically discussing Burzynski on Twitter. It isn’t long before I am being asked to comment on specific patient cases (in this case, Laura Hymas of HopeForLaura), and before that specific patient is drawn in to the conversation. Despite the fact that it was a supporter of Burzysnki who originally began to include Laura in the conversation, it quickly becomes a case of “skeptics attacking a patient”.

Though I suspect our reasons will differ wildly, there is one point on which myself and @BurzynskiSaves agree on here – it is all very sad indeed; a conversation which started about a treatment, and the need to publish data, has devolved into mudslinging with patients and supporters.

Stanislaw Burzynski & Antineoplastons

At the heart of all of these exchanges are the questions of validity, honesty, and integrity – does Burzynski’s treatment work as advertised, is he being honest about the protocols that he is using and the results he is getting, and is it correct for him to be operating as he does. At the risk of treading over old ground, I do not currently believe that Burzynski’s treatment works as advertised. However, this belief is not because I blindly believe whatever the FDA tells me, or because I want to help suppress a revolutionary cancer cure; it is because I have examined the evidence presented to me, and concluded that it does not support the assertions that he is making. Burzynski’s website tells us that he discovered antineoplastons in 1967, the same year he graduated. It also tells us that he founded his clinic and began treating patients in 1977. Burzynski’s resume notes that he made a presentation on April 9th, 1988, in Kurume, Japan, at the Kurume University School of Medicine. The title of this presentation was “Clinical Results of Antineoplaston Therapy”. In order for such a presentation to be made (assuming that the details about the presentation are accurate), there would have to be clinical results, and in order for there to be results, there would have to be clinical trials. One can postulate, then, that Burzynski began trying his antineoplaston therapy, in humans, at some date before the presentation. It has been approximately 45 years since he discovered antineoplastons, approximately 35 years since he began treating patients with them, and approximately 24 years since that first presentation in which he discussed the clinical results of his treatment. This is an extremely long time to be testing a treatment without publishing significant results, moving further through the trial process, or reaching a stage where the product can be marketed to the general public. The FDA estimates that it takes approximately 8.5 years for a new cancer drug to reach the market, from inception, through trialling, and to delivery. This 8.5 year timeline includes laboratory and animal testing. The FDA have recognised that some drugs are a priority, and have even made special processes available to try to shorten this timeframe further, to allow patients to benefit from lifesaving drugs. Even allowing for extra time in laboratory development, typical delays in the process, and other factors, 45 years is an extremely long time for anyone to be trialling a drug, especially one with such astonishing results.

There have also been some questions raised about the honesty of Burzynski, and this is of particular importance when it pertains to his treatment protocols. Patients go to Burzynski when they have no other treatment options available, or when those treatment options available have proved unsuccessful or too dangerous. They do so because what Burzynski advertises is a targeted gene therapy using his antineoplastons. I suspect that many are not expecting to be given chemotheraputic drugs as part of their treatment, and it is certainly not something that is featured prominently on his website, but Burzynski isn’t just treating with antineoplastons – he’s often prescribing multiple chemotheraputic drugs for off-label use, at highly inflated prices from his own pharmacy. One patient blog talks about Afinitor and Votrient, and mentions that the patient is taking a combination of five off-label chemo drugs, along with the antineoplastons. This is not the only mention of Afinitor, there are numerous comments (scroll to comments for those) and patient blogs which mention that they are taking this (and other) chemo drug in addition to the antineoplastons. This couple maintain that they were not told that some of the drugs were chemotheraputic drugs, and that taking those drugs has cause problems with eligibility for other trials (though I am uncertain of the veracity of this site). Though the Burzynski clinic website prominently features the antineoplastons as the cure for cancer, it seems that many (if not all) of the patients are being given traditional chemotherapy in addition to the antineoplastons.

Finally, many have questioned Burzynski’s integrity, due to the prices of treatment at his clinic. Reported prices vary, but are generally in the tens of thousands per year of treatment. The FDA permits charging during clinical trials under very specific circumstances (related to investigational drugs), though it does not regulate what is charged. The FDA permits the charging so that drug manufacturers can recover the costs for making these drugs while trialling them. Although one patient blog mentions that the charge is not for the trial but for “case management” (suggesting that they are not being prescribed under this investigational drug regulation), it is possible that things have changed since this blog (and indeed, the law changed to allow for charges around the time of that blog). One can only speculate what it costs to produce antineoplastons, though Burzynski sells capsules containing antineoplastons for approximately $1 per capsule (0r $0.78, if you buy in bulk), though Burzynski seems to make most of his cash charging inflated rates for case management and off-label chemo drugs.

Data is important

It would be more than a little hypocritical of me to point out the fallacy of ad hominem attacks, and then base my own criticism of Burzynski solely on personal actions which are questionable. Whether or not Burzynski is himself ethical, honest, or even nice, if he has developed a miracle drug, he has as much right to trial it as anyone else (and even to be lauded for his discovery). Though I don’t like the stories which suggest dishonesty, they are just stories, and are as liable to bias as the patient anecdotes that “skeptics” dismiss as “not proof”. One thing which is more telling than any stories, and the point which should be focused on, is the lack of any real data to support Burzynski’s treatment. Though his website has many patient anecdotes and success stories, there are also plenty of examples where the treatment did not work, and as he seems to exclusively list success stories, they can not be counted on as reliable evidence. Most articles about antineoplastons published in scientific journals have been authored or co-authored by Burzynski himself. When people use these to point out that he has published data, they overlook the mediating factors – namely that the research hasn’t been replicated (to any significant degree) by completely external researchers, and that the journals in question are often considered poor quality. When it comes to drug development, data is king – this is simply the application of the scientific method. An assertion must have the data to support it, or else it should be considered false, and in this case, the data to support it is not reliable. It is true that there have been cases where data has been withheld from the FDA, and where drug companies have behaved unscrupulously – I absolutely won’t claim that “big pharma” is perfect – but these cases do not override the need to produce data which supports your assertion that your treatment works.

Patient Choice & Informed Consent

It has been said to me that patients don’t care about data, they care about people. They speak to people treated by Burzynski and they are given hope, and hope is the most important thing. It would be easy to keep discussing Burzynski in a very detached way, focusing only on the data (or lack thereof), but for many, this discussion is too shallow, because there are patients involved, and those patients have families and friends, and a whole host of people who would give anything for them to be better again. More than this, the patients have been drawn into the discussion, either willingly or unwillingly, and for them, attacks on Burzynski must often seem very personal, for a number of reasons.

One issue that is often raised is that of patient choice – the right of a patient to chose their treatment without criticism. Cancer treatment can be brutal, and even though treatments have improved, and the side effects are more manageable than before, there is an undeniable effect on the patient. Sometimes, patients decide that the side effects of the treatment outweigh the potential gain, and either decide to seek no more active treatment (e.g. pursuing palliative care only), or decide to seek an alternative, whether it be conventional treatment in another country/hospital, or an alternative therapy. Patient advocates, and Burzynski supporters, all maintain that patient choice is important, and I’m inclined to agree. I imagine that, if I were very ill, and the chances of a cure were not good, I would like the ability to choose whether to pursue further treatment. I wouldn’t like to deny this choice to anyone, but what I would like is for that choice to be based on the best information possible.

People say that patients don’t care about data, journals, and FDA squabbles, but even if that is true, patients do deserve the truth about their treatment, their prognosis, and everything associated with it. A patient has every right to choose alternative medicine over conventional treatment, but it is a poorly informed choice if it is based on informercials, advertising websites, and unproven claims. The fault, and the criticism, lies not with the patient, but with those who would prey on people when they are feeling vulnerable or desperate. Scientific papers are often dry and inaccessible (both because of the content, and because of the expensive paid access required to read them), and it is not as easy to relate to data points on a graph as it is to relate to a named patient, with an adorable picture and a heart-warming cure story. Quacks know this, and use it to manipulate people, helping only their own bank balance, and often leaving families devastated when the promised cure does not come about. I have been accused of attacking patients seeking Burzynski treatment, of wanting to deny their freedom of choice, or take away their last hope; this has never been the case. I don’t attack patients because I am aware of how difficult it is when a family member is sick, and when the treatment is difficult. I don’t attack patients, because I believe the blame should be laid squarely at the feet of those who manipulate and deceive patients.

A final, thorny issue is that of fake patients. Even as people call for Burzynski to publish data, there are various patient blogs reporting successes and shrinking tumours, and a multitude of patient anecdotes and youtube videos featuring people who were given a very poor prognosis, and have lived far longer than expected. Whenever Burzynski is discussed, these patients are mentioned as proof, and I have more than once been asked to comment on specific patient cases, or asked if I am, in criticising Burzynski, calling these patients fakes, shills, or liars. The truth is, I can’t comment on these cases, because I just don’t know the circumstances. I am not privy to medical treatment details, personal information, or anything like it. I see the information that is made public by the patients and nothing more. I am glad to know that there are people beating the odds, living longer than expected, and even going into remission where before there was little hope for a cure, but I can’t say what causes these events any more than a Burzynski supporter can claim them as definite proof of efficacy. I would certainly prefer to believe that we do not live in a world where people pretend to have terminal illnesses to make money, sell a treatment, or otherwise deceive people, though I know there are those who have. Asking me to comment on patient cases is ultimately fruitless – I have no way to know if people are legitimate, or if they are telling the truth when they update their blogs – and, importantly, my quibble has never been with the patients. If there are people acting as paid marks for Burzynski, then they are doing something which my conscience would not allow me to do, but they are ultimately in the employ of Burzynski, and this is where the buck should stop.

This is not, and has never been, about me wanting to take away hope, or be malicious to patients. The onus is on Burzynski to publish data to support his claims, and I believe that patients are entitled to know what data there is (or is not). Patients deserve real information to help them make their treatment choices, they do not deserve to be manipulated or lied to. This has only ever been about one thing: information. Patients deserve information, not infomercials.

 

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