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Hatin' the Haters - 09/29/13

posted Sep 29, 2013, 1:00 PM by Kathryn Simpson

I’ve been writing this little bloglet for the last three years (and can we all briefly say, “Holy crap! Where did the time go?!”). Kind folks who’ve been reading during these months know I’ve was diagnosed with Multiple Sclerosis in early 2011. It’s been a learning experience, above all, but I’m generally in pretty decent shape. I am definitely fortunate. I have a great support system; access to medical resources and the disease itself has been fairly gentle with me.

It certainly hasn’t been without hiccups. My first prescription protocol didn’t work. It didn’t stop the progression of the disease, so my then-neurologist switched me to a more aggressive treatment. Which DID seem to stop my crazy immune system from attacking my central nervous system. Huzzah! But after a distressingly brief period, my body responded to the drug by triggering a response to a usually-benign little virus most of us actually already carry around in our systems*. The response is an antibody. The antibody means continued treatment could result in a bad case of PML, or Progressive Multifocal Leukoencephalopathy**. 

Long story short, I need a new drug. My new neurologist is confident the next step is an oral medication. No injections, no infusions, no needles in general. My veins are very grateful! We're trying to get the necessary ducks in a row so I can start this protocol before my immune system catches wind I'm not currently medicated and decides to freak out like the Cookie Monster at Mrs. Fields. I think I can trust this doc and Husband definitely likes him, so.... Forward motion, right? 

But not so fast! I got word Friday that my insurance company will not cover the new drug. That in and of itself is not a surprise. What's surprising is the reason. Apparently, I haven't "failed" enough drug protocols for them to cover me trying a new one. They acknowledge the first fail. But in their pencil-pushing, insurance-adjusting, money-grubbing paradigm the first failed drug that resulted in new active lesions on my brain (lesions, as opposed to Legion) should have resulted in my then-neurologist putting me on a specific different prescription of less effectiveness. Does that make sense? They're saying I should have tried another drug with a less successful track record AFTER the other drug didn't work. The insurance company wants me to waste more time and risk more of my health to prove that I'm really sick enough to justify trying this new drug protocol now. 

My first drug didn't work, I tried a second one. The second one put me at risk of disability or death. But because my second attempt wasn't the drug the INSURANCE COMPANY recommends, they will not approve my 3rd chance for keeping this disease at bay. 

So...you know. The insurance company holds the strings for the care of my central nervous system. It boggles the mind in question.

That everyone reading this has themselves--or knows someone who has--been in this pickle makes it even more simultaneously ridiculous and infuriating. Insurance companies are not medical experts, regardless of the alleged qualified professionals they hire as consultants. I get they have to hedge on the side of caution because there are humans who want to work the system for extra meds or extra treatments or whatever. But I don't think I'm off base when I say people with chronic debilitating illnesses are not just out drug seeking. Somebody with lymphoma, lupus, Alzheimer's, scleroderma, rheumatoid arthritis, multiple sclerosis, etcetera...we're not just out to get high or try a new Rx. We're trying to live our lives. Meaning, with no hyperbole, we are trying to HAVE a life. To STAY alive. And these insurance company stooges*** make decisions based on numbers on paper. Decisions that have nothing to do with the impact on actual human organisms. It's a farce!

Here's the deal for me, personally. Like I said before, I'm very lucky. My symptoms have not yet manifested in obvious physical infirmities. I'm able to walk unassisted, most days, and my vision has only been affected about 5%. I have issues that are frustrating (sometimes terrifying), but compared to many people with this disease I'm doing pretty darn good. But the nature of MS and other progressive illnesses is exactly that. They progress. They continue to advance in whatever hell they want to reap on our systems. Our care is basically about stalling and postponing further damage. And that fact is always just out there. A peripheral truth of our "new normals" and I'm here to tell you, it's a drag. Because when I got the call that the insurance company is not supporting my new treatment, I immediately heard a clock ticking. Because every day I live without some kind of harness on this disease is a day closer to when the disease decides to stop screwing around and really deal me another major setback. 

The insurance company, with its paper-pushing, money-grubbing, bottom line-worshiping paradigm, is risking my health and my future. It's playing chicken with a disease that it doesn't have to live with. I'm living with it. Husband is living with it. The people who have to pick up slack for me when I make MStakes (that's MS+mistakes...get it? har-dee-har-har!), they have to live with it. 

So from all of us to you, ICP (that one's Insurance Company Paradigm), how about you just do what you're supposed to do and insure I have a chance for a safe and healthy future as a premium-paying client? Because right now it feels like you're just stalling. Like you want to drag out my disease in favor of me getting so sick that I can no longer ask you to cover my health needs. I wonder...are you in the practice of denying treatments because you're secretly waiting for your clients to get ill beyond repair? Are you patiently angling for your chronically-ill insured to go on Hospice because that's ultimately less expensive than pursuing new avenues for health? Making us wait costs you nothing. Sending us a letter or a missive isn't nearly the investment of supporting a more advanced drug protocol. Making us chase our tails by slowing our treatment in favor of older, less-effective prescriptions is far less uncomfortable for your board members. Don't mind us. We're just listening to clocks tick.

I am so angry and frightened right now, I'm having a hard time holding my act together. Husband is doing is best to keep me laughing and focused on all the good in our lives. But I am pissed. Because of all the obvious reasons, but also because I hate having my fate rest in the hands of people who have no appreciation for the position in which they've placed me. So hear this, ICP, loud and clear: 

Leave the big decisions to the actual medical experts.

People who are facing a shortened life because of a physical condition truly don't give a crap what it's costing your stockholders. 

Keep your fiscal bottom line away from my future. 


*What I like to call Jesus Christ Supervirus

**Keep your mitts off my white matter!

***Not the best quality, but you get the point.

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