I've been in a bit of moral dilema lately. There's not really an answer and I'm not really looking for one I just need to throw these thoughts out there and get them off my chest.
Copaxone is the med I take for my MS. It is an injection given with a tiny little needle [I rarely even feel the needle] and the medicine is a small amount [1ml] injected under the skin. It takes about 23 seconds to start feeling the burn. It starts as a slight sting and within 90 seconds it feels as if someone is snubbing out a cigarette whereever the injection has been given that day. Over the next 15 min the burn eases up but it's pretty ouchy for about 6 hours and tender for 30 hours. I have to rotate the injection site daily - the jiggly underside/back of each arm, the upper thigh, the hip and the lower abdomen. I know the start/finish of the burn because out of curiosity I have timed it many times. Somehow know exactly what to expect and when it's going to stop just helps me get thru it. I'm a nurse - would you expect less? :-) The resulting welt is about the size of a medium orange and about 1/2 the time has hives surrounding it [OR is it all hives and the center hives converge to make a welt?] and the size of the sting extends about 8 inches in each direction. In the case of my arm it is the entire upper arm. I'm not complaining [well not in this post :-)] but it does contribute to my dilema a little. I'll explain that in a bit.
It's no secret that I am not a fan of giving myself a shot everyday. I've 'forgotten' to give my shot every day for a week. I haven't missed a day but it's later and later in the day. Today it was 9 hours late.
My medication costs $3606.18 every month. [I have extremely fortunate in that my co-pay is only $40]. Do the math - that is almost $130,000 in 3 years. The copaxone does not change the course of my disease and the mechanism of action is 'unknown'. It is 'believed' that the copaxone will reduce the number of new brain lesions and is 'hoped' to reduce the number exacerbations from 1.3 exacerbations a year to 1 exacerbation every 3 years. 'Unknown', 'hoped' and 'believed'. For $43, 000 a year. I may or may not EVER have another exacerbation with or without the medicine. Assuming that I do have 1.3 exacerbations x 3 years that would be 4ish. With the copaxone they are anticipating 1. There is no crystal ball. So essentially I have gambling $130k on 3 exacerbations. I am really struggling with that. With all of the healthcare cuts and uninsured [or under-insured] patients I'm not sure I can justify that kind of expense for a maybe. It's a question of social conscience. How many mammograms could be done for 130k? 130k could hire a doctor for a free clinic for a year. How many patients could get TB tests? How many kids without insurance could get a checkup?
The company that makes copaxone sends me literature every single week. They sent me a fancy-dancy day planner early on. One week they sent a fancy travel bag. Once they sent a little lock box that I have nooooo idea how it supposed to be used. Someone said it's for the fridge. Really? This week there was a box which came by 'expedited' mail and it contained alcohol wipes. Seriously? I doubt that they would have cost more than 2 bucks at the store. Why could they not have sent them WITH the medication or reduced the cost of the med by 2 bucks? It's been about 6 weeks and I have gotten at least 8 or 9 packages from them. I shudder to think of the marketing costs for the pamphlets and brochures alone. Postage. Go to sharedsolutions.com. There's an 1-800 number staffed should patients have questions about the treatment. Shouldn't patients be directing those questions to their doctor? Are they trying to create an emotional tie to the support that we newbies need? Shouldn't that be directed toward an unbiased support system like The MS Society instead of a company that thrives [and profits] on our insecurities and fears? Don't forget that they sent an 'injection specialist' to teach me how to do an injection. Where did the money for her salary come from?
So that's what is going on in my head. I have to think about it before I give the shot and it's front and center during the burn. I tend to question the ethics of it all more when I'm at work and I see so many patients who do not have insurance. Especially when something bumps that tender spot and I think about why it's tender. Instead of seeing stars I see dollar signs. Since the spots stays tender for about 30 hours the odds are that one of them is going to get bumped.
I am so fortunate to have insurance that covers my medicine. I worry what would happen if we didn't have insurance but not for this. Without insurance I not hesitate to walk away from it. 43k for 'unknown, hoped and believed'? I don't think so.
So the question is - why am I am I not walking away now? And THAT is the elephant in the room.