This week is the Anaphylaxis Campaign’s Anaphylaxis Awareness Week, and I am going to be doing a blog post every day. Today’s blog post will be about epipens, which I feel is in need of greater discussion. As an epipen carrier myself, I am faced with questions about them from everyone from friends, strangers and even GPs. So much information is batted around, which is often incorrect, so I thought I would try to dispel some of that here.
An epipen or an epinephrine auto-injector is a needle of adrenaline which is used to treat anaphylaxis. It is given as an intramuscular injection into the outside of the thigh (NOT INTO A VEIN as someone once asked me). It will reduce the effects of the anaphylactic reaction, such as inability to breathe, swelling of the throat and tongue, which are potentially (and certainly in many cases) fatal if not managed properly, or even if epipens fail. It is the first stage of treatment until medical professionals arrive (always call for an ambulance if someone is having an anaphylactic reaction). This is partly why I get so angry with people in public who refuse to stop eating something if an allergy sufferer is nearby and cannot move away (e.g on planes), and say ‘just use your medication’, because using an epipen should be an EMERGENCY option, and putting yourself in a circumstance to use it involves putting your life in serious danger, which no one should have to suffer.
There are currently three different brands of epipens available in the UK: EpiPen, Emerade and JEXT. They essentially all do the same thing, although Emerade used to boast a longer shelf life. I have carried all three brands in my life, although EpiPen tends to dominate the market. I personally prefer EpiPen and JEXT over Emerade purely because the instructions and bright colours on these make them easy to find and use in an emergency.
An epipen typically expires after one year, which means that new ones are required every year (or often less depending on the expiry date – I’ve been given ones that only last for six months!). The time of year when you need new epipens is always a nightmare, particularly in the last few years when there has been a serious supply issue. It took me nearly three months to get my last prescription, meaning that a pharmacist in Boots was genuinely concerned that I had no in date epipens to carry and issued me an emergency one for safety. In August 2018, the FDA approved extending the expiry dates on some products by four months to relieve some of the pressure, but this is worrying as the adrenaline becomes less effective the older it gets. An epipen is safe to use until the adrenaline solution goes cloudy, but it would not be as effective, and would certainly not guarantee saving someone’s life. Many people are concerned about how Brexit is going to further impact this supply problem, as medical supplies are heavily reliant on other countries. There has been little update from the government on this issue (surprise surprise).
I was prescribed epipens when I was three years old after my first (and so far only) anaphylactic reaction to peanuts. I was given those with the child dosage of 0.15 mg, and instructed to always carry my epipens in pairs in case one failed or if I required a second dosage of adrenaline. This is very important if you carry epipens, as only carrying one could be a risk if it fails. It is reccomended that epipens should always be carried in pairs for this reason. My mum always made sure that we never left the house without them, with a special bag to put them in. As I got older, we had special insulated pouches to keep them in, so that they didn’t get too hot or too cold (which can result in them failing) – I have put a link to where I get my own from at the bottom. Even now, with a larger adult dosage, I follow the advice of the Anaphylaxis Campaign to carry my epipens in pairs. The fact of the matter is that it’s better to be safe than sorry, and having two doses of adrenaline is not harmful.
I have, however, had difficulty in the past with convincing doctors to prescribe me the correct number of epipens. I have met many who simply didn’t know their own guidelines, and I once had to have an argument with one who refused to prescribe me two pairs (which I was willing to pay for). I often find myself quoting their own guidelines to them, and I met one doctor when I first came to university who did not know that epipens are supposed to be carried in pairs! From my interactions, there seems to be a lack of knowledge amongst doctors about allergies and epipens, which doesn’t provide me with a lot of faith in their opinion. The Anaphylaxis Campaign is running a campaign called Anaphylaxis Information Matters (AIM) to better educate healthcare professionals in their understanding of allergies, and to raise awareness of the massive underfunding of allergy care (there are only 30 allergy specialists in the UK, equating to one specialist per 700,000 patients) which I have left a link to at the bottom.
The majority of people who die from anaphylaxis do not have an epipen with them. A survey conducted by the Anaphylaxis Campaign found that an alarming 44% of 15-25 year olds admitted to not always carrying their epipens. Given the size of them, it is to a certain extent understandable, and there is ongoing scientific research to turn the epipen into a pill to take every day (think of an antihistamine on steroids – pardon the pun), which would be ideal. Men have difficulty with the size of the epipens, particularly young men and teenagers who do not carry a bag, as there are few pockets big enough to accommodate an epipen. Additionally, people can be cruel, and many allergy sufferers (myself included) have been at the receiving end of bullying for having to carry medication. This discourages young people from carrying their life saving medication with them, and the Anaphylaxis Campaign is running a campaign called #takethekit which encourages young people to carry their epipens.
Hopefully, raising awareness of the importance of epipens will help people to better understand the seriousness of anaphylaxis, and to encourage the carrying of them. This will hopefully save more lives and bring the seriousness of allergies and the life-threatening nature of them into the public consciousness, ultimately providing a safer environment for allergy-sufferers.