As a sufferer of Idiopathic Anaphylaxis the latest Epipen controversy has me a little concerned for a number of reasons.
My life could literally hang in the balance.
I don’t just carry an EpiPen or two. I carry ten or more at any given time. When I’m planning to go on a trip, I discuss with my allergist just how many EpiPens he wants me to take with me.
When we went on a cruise last year that number was 21, incase we were somewhere in the wilds of Alaska and I had to wait for emergency medical services. That would give me almost two hours to live if we had to wait for medical services. Since anaphylaxis isn’t something you can choose to treat or not. It is literally a treat or die situation; I am dumbfounded at how a company can choose their bottom line over saving lives.
The answer I am seeing the most to the high cost of the EpiPen is to get an ampoule of adrenaline and a syringe.
I have an issue here.
When you can’t breathe, you can do one of two things…
1) focus on breathing – it is kind of important after all.
2) divert the energy I should be putting into breathing to draw up the right dose of a life saving drug.
I do not see how this is an option for an adult who is often on their own.
For children who are around school nurses, or even at home with their parents I can see how the ampoule could be a viable option. (Though when seconds count making sure you have the right dose takes too much time). While still having the auto-injector for when the child is outside or at a friends house.
Fear of needles.
Let’s face it, the auto-injector is favored because you never have to see the needle. I have a number of friends who will pass out at the sight of a needle, let a lone seeing actual blood. So if my life is at stake I don’t want to be reliant on someone else to draw up AND stick me with a needle. Because lets face it, if you prick me with a needle…I’m going to bleed, a bit. And if you have to use a syringe there is no way to hide the needle from view.
Then you get into the situation of needing a sharps container to dispose of the needle, and carrying multiple syringes incase you need more than one dose…. The list goes on and on.
So what are my options?
The News Media is talking up a couple of different manufacturers who plan to put out a generic auto-injector within the next year. However, my fear is that the FDA will rush them through without allowing the proper amount of time to test for viability. One generic brand has already attempted to release an auto-injector but was shut down because it didn’t deliver the correct dose.
Another question I have is, how can they be sure the generic adrenaline will be as effective? Not to mention…for me specifically…will they work? Since I also have adverse reactions to Soy and Yeast, AND other drugs – namely steroids- there are no guarantees that a generic will work for me. Since one of the reactions I have to these additives is anaphylactic you can imagine my fear of using a new product.
So where does that leave me in this medical corporate greed era?
My personal take on the issue.
Since I am often out doing errands on my own – quite literally taking my own life into my hands to keep up with the demands of our household – having things pre-measured is a must.
My husband found me small containers which I filled with the exact dose for my antihistamine I’ll need at the start of an attack. This way I’m not carrying around the giant prescription bottle filled with the magic elixir and trying to find the measuring cup, and measure out exactly 15cc’s of the medicine when I’m oxygen deprived. Believe me when needed I’m not afraid to just put the whole bottle up to my mouth and pour, which isn’t a good thing. So my little bottles are a must!
However, I wouldn’t be able to pre-measure the adrenaline as it cannot be exposed to sunlight for long periods, thus a pre-filled syringe would not be a viable option as it could degrade to the point of being ineffective, which leaves me having to draw up another dose when I’m even worse off than when the attack started.
Let’s get real:
Do you see the snowball effect here? It’s act quick and decisively…or…die. There really isn’t a middle option unless you can afford to have a certified medical person with you at all times.
Also there are times when more than two doses are required (for me), if I’m by myself, I’m screwed because at that point my oxygen levels are down to the point that I can’t count to 10, let alone focus my eyes adequately enough to read the line numbers on the syringe.
So the auto-injector is vital to my survival.
Also when it comes to other brands I have to not only be careful of what’s in the new brand, but also whether or not it will work as effectively as what I currently use. Believe me, most of the time I fall into the .01% of people who it won’t work on.
( I don’t carry the mantlet of medical freak lightly, I have earned it! Even the National Institutes of Health don’t know what to do with me.)
I will be having a long talk with my Allergist about what to do when I get my new prescriptions from him. I’m very much a ‘stick with what works’ person, so if my insurance says no to the EpiPen, I’m not sure what I’m going to do. Aside from having major panic attacks about leaving the house.
The stress of switching brands.
Aside from the stress of wondering if the generic will work there is also the issue of new procedures to use the auto-injector. Apparently the one generic that is offered currently has two caps that need to be removed before use, not one as the EpiPen has. So for someone who often has to jab the auto-injector into her own leg, this means learning new moves to ensure a successful dosing. Not the easiest thing when you’ve been using one style for over a decade.
I know it doesn’t seem like that big of a deal, but believe me it is. Muscle memory is a real thing, and it is vital to my survival during an attack. I have to focus on getting air past my swelling airways and into my tight lungs in order to survive. So that means if I get distracted on something crucial like…opening an auto-injector I could pass out before I can get the meds into my system, which literally lessens my chance of survival.
*All articles were found on either CNN or Fox, for more information I urge you to search out these articles and arm yourself with information.