I'M NOT OK: Dealing With Health Insurance When You Have a Chronic Illness

If you had told my needle-phobic childhood self that I’d ever be begging complete strangers for a box of shots so I could inject myself at home I would never have believed it, but that was my life for months.

Jul 24, 2012 at 9:00am | Leave a comment

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A box of my shots, with comics for scale. Bonus dirty fork!

I have multiple sclerosis. 

I’m also ridiculously, unbelievably lucky. Not because I have MS -- I would call that a moment of less-than-stellar fortune -- but the circumstances surrounding my disease are really, really positive.

I was diagnosed early and young, which is happening more lately and has a huge impact on my prognosis. I have a team of doctors that I trust and who treat me with respect. I also have some of the best insurance possible -- when I retired from the military, my retirement came with a health care for the rest of my life. I see doctors that I choose at Johns Hopkins at a very low cost.

I know exactly how lucky I am, and I’ve never stopped being extremely grateful. For all the things that went wrong during my medical care during my time in the service, there are some things the military gets right, and this is one of them. Even things that are very, very good can go wrong, and sometimes they do.

MS isn’t an inexpensive illness to treat. There are worse -- cystic fibrosis, cancer, HIV -- but MS isn’t a cheap date. She likes long- stemmed roses, champagne, and always orders the surf and turf; she’s that girl. I take 18 pills and one shot a day, and while these are all covered by my insurance, the system isn’t always smooth.

Getting authorized for my injectable medication, Copaxone, was originally a knock-down drag-out fight with my insurance company that took about three months. Copaxone is the medication that keeps my disease in remission; it’s intended to keep me walking, keep new lesions from forming, and prevent the most severe symptoms from arising. It isn’t perfect, but it’s one of the best medications on offer, and it’s the key component of my treatment. 

There were countless phone calls and faxes between my doctor, my pharmacy, me, my insurance company, the drug company itself, and a company associated with the drug company who helps handle issues like this.

At the time Copaxone cost about $2,800 a month, and I was desperate for it. If you had told my needle-phobic childhood self that I’d ever be begging complete strangers for a box of shots so I could inject myself at home I would never have believed it, but that was my life for months.

My husband and I were looking at what we could sell to make it work without the insurance authorization: blood, plasma, my hair, maybe my sweet, sweet ass? I’m only half kidding about the prostitution: While I’d never done anything in that line before, I considered everything, but I wasn’t well enough to actually take on sex work. I wanted to stop being sick, I needed this drug to do that, and I was willing to do whatever it took to pay for it. 

The standard drug-discount programs weren’t an option for me, because I had insurance; I was just waiting for it to work out. While I was waiting, I was losing work days, losing ground to my disease, losing time with my family and my friends, and in general just losing. I felt like hell. I was spending every ounce of energy I had in trying desperately to acquire this medication that I didn’t even technically want to take. Who looks forward to giving themselves shots? 

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My glamorous life. I mean, who ISN’T vying for opportunities to be this hot?

Eventually, my pre-authorization came through. The trick was time and very helpful pharmacy staff who had been through this so many times before. They’re fantastic. 

After nearly three years of no problems, last December I went in to the pharmacy to pick up my monthly box of shots. Despite having plenty of refills, when I arrived I learned that the pre-authorization was no longer any good. There wasn’t any warning, and due to how expensive the shots are (the price has been going up every year) I never get much wiggle room with refills, so I only had four shots left. I was stuck.

I began making all the calls; I remembered enough of the process from the last time, and I’d taken meticulous notes, but I spent weeks without my shots. 

After that I was so afraid of ever being caught without my medication again that I spent the month alternating between injecting one day and skipping my shot the next in order to store up a reserve. This had two results: First, I had a half box of backup shots, which made me feel safe. Second, I had my worst relapse, and needed to have my first set of infusion treatments. 

Paying for my Copaxone out of pocket isn’t an option. I never have an issue with my pills -- there isn’t any pre- authorization for those, as they cumulatively come in at a little over $1,200 altogether. If my insurance were to fall through in some strange freak accident, I’m lucky enough that I could dig together the money for my pills -- wrecking my savings, selling my hair, pawning things. Copaxone, though -- that’s just impossible. As of today, it costs $5,128.99 a month.

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Looking at this number just hurts.

$5,128.99 a month, everyone. That means that without including my doctors’ visits, my mobility aids, or my pills, I’m looking at $61,547.88 a year. That’s more than my family makes a year, in case you were wondering. 

So what happens when you are disabled and your insurance falls through? Or just goes off the rails, due to a pre-auth falling through? If your insurance just falls through -- if you lose your job, or you otherwise just plain lose your insurance, there are resources. You can call the drug companies and ask about discount plans -- Copaxone has a good one, and others do, too. You can call your disease societies and see if there is help there, too. The MS Society has help, and many other disease societies have help, too. But if you have insurance and your insurance just flunks out for a bit, well, you’re left hanging, hoping, and relying on them to get it right. Eventually. 

This sort of thing happens all the time. When it happened again last week I realized this isn’t just a fluke. I talked to my pharmacists and I discovered that pre-authorizations can be set for three months, six months, one year, or several years. I learned that patients don’t need to be told when they will run out. When I called my insurance company to ask when my current Copaxone pre-authorization will next expire, I received two different answers from three different calls. 

Here is the thing that I really want to say: I am one of the lucky ones. I am one of the luckiest people in this country. People answer the phones at the offices that I call. My doctors’ offices call me back and they work with my insurance offices. I don’t have to pay extra to have my doctors work with my insurance company. (This is real and it happens.)

When problems happen, I’m still healthy enough to have the energy to fight it out; not everyone has this advantage. When things like this come up, I’m sad and scared and my hands get shaky but I’m able to sound calm and use all the right words; this is a huge advantage. It works out, eventually. I go to the car and scream and punch the dashboard and in the end, it’s OK.

But it still shouldn’t be like this. I can’t look at this number, this terrible number, this enormous number -- $5,128.99 -- and feel OK. I’m going to be OK, but hey, you know what? Some other people are not going to be OK, and that fucks me up.

What happens if you go to pick up your meds some day and you find out your pre-auth is jacked up and you can’t work it out in time to maintain your health? You can lose time at work, potentially lose your job, which can mean losing your insurance -- a whole spiral of awful. 

What happens if you can’t scrape together the funds to pay for your medication directly?  Really what it all comes down to is this: What happens to the people who aren’t lucky? There are people who can’t stay calm, who can’t find the right words, who have doctors who charge money to work with their insurance companies, who have insurance companies who don’t always pick up the phone. There are people who have to deal with months of fighting every single time a pre-authorization fails. There are people who have to deal with never, ever resolving a pre-authorization; those awful times when a doctor writes a prescription but the insurance company says no, this medication just costs too much, they won’t cover it. 

I spend a lot of time hearing genuine horror stories from my other disabled and chronically ill friends. My “bad times” are nothing compared to theirs. If I am spending weeks making frantic calls begging for medication that I need (because multiple sclerosis is forever) then I can only imagine what it’s like for my friend Daydee, who just had a lung transplant but was denied coverage for her anti- rejection medications.

I’m lucky and I’m grateful; I’ve always been a grateful girl. I’m so damned grateful for everything I have. I’m also furious and scared: I want something better for everyone else. I’m seeing the cracks in some of what I’m told is the best of what’s on offer: This system is not good enough.  

This isn’t good enough. People who are sick don’t always have the energy or time or help to fight these battles, and some days, I wonder if the insurance companies aren’t counting on that. 

I don’t know what else to say. There has to be something that is more compassionate, more kind, more giving, more capable, more competent. We can do better. We have to do better.