Mylan's Profiteering From EpiPens Must Stop - An Allergy Mum's Story

30/09/2016 16:38

Sarah Jessica Parker and I have three things in common- curly hair, a passion for beautiful, impractical shoes and a love of Ferris Bueller. Recently, I discovered that we share something else, or rather our children do. Her son and my daughter both have a potentially life-threatening food allergy.

My youngest daughter is a lively, sleep stealing, almost two year old. She's also allergic to dairy, eggs and, like Parker's son, nuts. Food allergy is caused when the body mistakenly makes an antibody to 'fight off' a specific food. When the food is next eaten or is in contact with the skin, it triggers an immune system response. Symptoms develop rapidly and can be mild or severe, affecting the skin, gut, breathing or the whole body's circulation system. The most serious type of reaction is anaphylaxis which can be life-threatening and requires emergency medical attention. There is no test for severity so allergists look at probability and risk when assessing patients and deciding on a care plan.

In my daughter's case, her allergies were diagnosed early, when she was 7 months old. To date, she has had numerous reactions, some even on skin contact with foods she's known to be allergic to. We don't go anywhere without her supply of antihistamine and an adrenaline auto-injector (more commonly known by the brand name EpiPen). We've had to use antihistamine on many occasions and I'm grateful for the safety net of the EpiPen, should the most severe type of reaction ever occur. In this situation, the EpiPen is an immediate way of administering a shot of adrenaline (delivering a single, measured dose when the pen is jabbed against the muscle of the outer thigh) buying crucial time until an ambulance reaches you. The pharmaceutical company Mylan, manufacturers of the EpiPen in the USA, has been heavily criticised for its stratospheric price hikes on EpiPens, meaning they now cost patients $500 or more. This prompted Sarah Jessica Parker (a campaign spokesperson for the company since her son's diagnosis) to sever her ties, stating:

"I'm left disappointed, saddened and deeply concerned...I hope they will seriously consider the outpouring of voices of those millions of people who are dependent on the device, and take swift action to lower the cost to be more affordable for whom it is a life-saving necessity."

Last week, Mylan's CEO, Heather Bresch, appeared before Congress, uniting Democrats and Republicans in their condemnation of the pharmaceutical giant's actions. In the UK, our precious NHS means that this life-saving device costs patients no more than the price of a prescription. And for children under 16, like all prescriptions, it's free of charge.

The reality of being the parent of a child with multiple food allergies is constant vigilance when it comes to checking labels, never being able to let your guard down in a public place and very rarely being able to grab food on the go. Think about standard kids' meals and try and think of things that don't contain eggs and dairy. Most processed food is labelled with a 'may contain nuts' warning because of production methods and these products are out for us too. On a bad day it feels exhausting. Because no matter how tired or late you are, you can never forget about it or be unprepared. It's exhausting having to explain to others on an almost daily basis. And it's exhausting because however careful you are, you worry about what will happen when - and it is most definitely when as opposed to if - your child has another allergic reaction. Cooking almost everything from scratch and being vocal about your child's allergies is the norm for any parent of a food allergic child. So is feeling isolated, rude, paranoid and fearful. I don't want to be the mum who answers your lunch invitation with a "yes please but... " I don't want to be the mum who takes her own food and cake to your child's birthday party. I don't want to be the mum who asks you not to give your child those biscuits to eat while he is playing with my daughter. But I am that mum because I don't want my daughter to miss out on ordinary childhood experiences or have problems making friends. But at the same time, I don't want to put her at unnecessary risk. So I will continue to advocate for her until she's able to explain things for herself.

As a parent, the discovery that your child's immune system cannot cope with something as fundamental to our existence as food is an overwhelming, frightening and sometimes lonely experience. In other ways, it's liberating. I don't sweat the small stuff as much anymore. I don't worry about whether she's getting her five a day, the timing of her meals or if she's eating something sweet, as I often did with my older daughter. Frankly, I'm just happy when she enjoys eating something that's safe for her. There are many theories about why allergic diseases (these include asthma, eczema and hay fever) seem to be on the increase. But contrary to popular belief, food allergies are still relatively uncommon affecting around 8% of children and only 2% of adults in the UK. Dairy and egg allergies are often outgrown during childhood but peanut and tree nut allergies are usually life-long.

As for the future, there is ongoing research in this area, particularly around desensitisation so I remain hopeful. But I know there are many challenges ahead. For now, I can be vigilant for her but there will come a time - school for example - when she will have to understand how to manage things. But worrying doesn't do either of us any good and I remind myself that there are worse things when it comes to your child's health. There is growing awareness of food allergies and while this is positive, I still encounter myths and misunderstandings from other people almost every day. The messages need to be louder and clearer. But I'm grateful for the work of the Anaphylaxis campaign and Allergy UK and for the support I receive from a brilliant childminder and other, allergy parents. And in the same way as I will teach her how to cross the road, I will equip my daughter with the skills she needs to take care of herself when it comes to her allergies. But for now, I'm the one navigating this minefield for her. It's a scary place to be but hand in hand, we will walk through it.