My thoughts on the health care thing (given my life, my multiple sclerosis, and my iBot)

by Michael S. Kaplan, published on 2010/03/21 21:01 -04:00, original URI:

Nothing technical in this post - if my multiple sclerosis does not interest you then feel free to skip this one, there will be another by morning!

Since this is not a political Blog, I am going to make sure this is not a political blog either. I am going to keep politics out of this one, and just talk about my situation over the last few decades. I'll be quick to delete anyone who tries to against this too much in the comments under the legal theory that the cross-examination will be exceeding the scope of direct! You have been warned!

Throughout the debate on health care, people have asked me various questions about how it would impact someone such as myself.

I figured I'd better explain.

My initial diagnosis, un-diagnosis, and re-diagnosis (details described in When is a question about prognosis a soup question?) was actually done as a self-pay kind of thing.

Interestingly, it was at first treated as a worker's compensation case, as the initial symptoms happened while I was working.

This was fine by me, as that was a part time job I was doing while building my consulting business into a full-time job, and I had no health insurance.

They quickly found it was not work-related, but the differential diagnosis included some pretty nasty potential stuff, from brain tumors on down. So there was not a ton of time to count the cost.

I was already doing a bunch of work as an independent contractor and/or a consultant (not enough that I would call it a career but it was a start), and I had piled up a bit of money doing it.

A bunch of that money got spent on MRIs with and without contrast, Visual Evoked Potential tests, Brain-auditory Evoked Potential tests, Somatosensory Evoked Potential tests, Corticosteroid infusions, and multiple visits to a neurologist (the one  who ordered all of those tests and treatments over the course of days and weeks and  months).

All in all, I spent at least $15,000 in that first year or two.

At the first juncture, my opinions about health insurance were made clear by the fact that there was no plan I could sign up for, since most would consider this lifelong illness to be a pre-existing condition, and the rest would be prohibitively expensive.

My neurologist pointed out that I may not need to be spending more money at that time (this was before Copaxone, Rebiff, Avonex, and Betaseron -- those $1000 a month drugs that have for so long since then become the staple for some neurologists), so now that I had paid for the expensive "diagnosis" part that, as long as I was mobile and had no debilitating symptoms, I could just go quiet and not worry about it so much.

Still I was advised to think about the future, as this was a ticking bomb of sorts, this fact that I had no health insurance and couldn't get any health insurance....

So there I was, off the grid. I would have exacerbations from time to time, and I would get better.

I bought the frames for glasses without a prescription (I wouldn't need prescription glasses for years, yet) because I would have some occasional visual symptoms and I wanted the excuse of I forgot my glasses if I was having trouble.

I bought a cane at a Rite-Aid without a doctor's recommendation because I was occasionally falling in the daytime and I decided I would rather people think I was a gimp than a drunk when it happened.

The latter was a terrible idea, by the way -- as I never got any training with it, and I was using the cane incorrectly!

The cane and the glasses were pretty cheap, by the way. So still self-pay, but not such a hardship.

In the middle of those years I had an attack of Trigeminal Neuralgia that was not assisted by medication, and I flew back to Connecticut to get the surgery done (all of that was previously described in Its been almost four years, Sherry....).

I still had no health insurance.

But Sherry was a resident (being paid by the hospital) and Dr. Poletti (who I did work for years prior) waived his surgical fee when I explained my insurance situation.

So I was "only" out the hospital fees, travel expenses, pre-op and post op medications, MRIs done before the travel to rule out more serious Janetta-esque illness mimicking MS symptoms, and follow-up care with a neurologist.

By the time the dust had settled, I was out a little over $25,000 that time.

All of this, I paid out of the (by this point) larger bit of money I had set aside.

After my post-op visits, I was off the grid again until my friend Tamra came to my apartment that I had not left for three weeks as I was having trouble walking and dragged me to the hospital.

I was now officially back in the system, and have been pretty much ever since.

Among other things, this included that whole "Copaxone, Rebiff, Avonex, or Betaseron -- pick your $1000 a month poison" thing. Plus new MRI scans, and new tests, time with physical therapy, and so on.

No one was waiving anything, so I went through another $40,000 or so over those next few years from all of that stuff.

Eventually, I started as a full-time employee at Microsoft, and one of the big conditions I had (knowing that my MS had cost me over $80,000 up to that time) was that the health insurance wouldn't exclude pre-existing conditions.

Microsoft's health insurance (in my case Premera Blue Cross as administrator, Microsoft as the paymaster) had no rules excluding pre-existing conditions.

Thus, by a fluke of circumstance I was finally be back under insurance again, just a decade or so and more or less $80,000 too late.

Now for many years that insurance has covered MRI scans and the $1000 a month drugs and later the six Novantrone infusions and eventually an iBot (which most insurance companies routinely deny and which even mine denied until after the first appeal -- as discussed in Cogito ergo cathedra... (I think, therefore IBOT...)).

I was prepared to pay for it myself if it was ultimately denied, after having gotten the hint of how empowering it would be (this was before later circumstances proved it to be such a game-changer that it was practically a world-changer). But it was nice to be back on health insurance, since the years I was covered had expenses that far outweighed/outspent the years I was not.

If Microsoft had no health insurance (rather than having such a superior one that they do!), I probably couldn't afford to work for them.

Now, looking back....

In some minor way, getting actual glasses sooner (rather than using "fake" glasses to hide visual issues) and training on the cane sooner (rather than using it in a way that increased the amount of fatigue) would have had symptomatic benefits for me, for over a decade that I had no such benefit.

And in a more major way, there is statistically significant benefit to overall disease course in going on one those drugs (Copaxone, Rebiff, Avonex, or Betaseron) earlier rather than later.

It will haunt me (and some of my friends, and maybe even an ex-girlfriend or two) for the rest of my days how much better I could have been, had I not been forced off the grid of insurance coverage by the rules about pre-existing conditions that made me think of clever solutions to avoid going bankrupt.

My choice, to be sure, but I really didn't have the money in those earlier days, and then since I was "off the grid" I had no doctor to encourage me to do anything different, or to go on some study, or whatever.

I will take the blame for the decision (since it was mine) and I definitely have the consequences of it to deal with -- I might still be walking or dancing or running or skiing now. Something I would gladly give up my iBot-esque "life on two wheels" for. In a heartbeat.

So getting back to the original issue, how do I feel about the health care bill passing?

Well, leave aside the way Johnson & Johnson dropped the iBot (discussed in From I SCOOT to IBOT, #10 of ??: The good, the bad, and the ugly (IN THAT ORDER)) in large part due to the refusal on the part of insurance companies to pay for it. I say leave it aside since even Medicare and Medicaid and the VA1 were often refusing to pay for it, so perhaps it would be just as hard to get in a few years as it was back then.

Looking past that, my feelings?

Well, it is too late for me.

But luck saw me through in spite of that, during the early days.

However, the next person who has a similar situation does not have to rely on the luck of circumstance to be able to get more effective (and professional) short-term and long-term care.

Because no matter what the republicans get repealed or the states push back, that one bit of poison (the pre-existing condition exclusion clause) is unlikely to ever make it back in. For me it is the single most important part, and all of the rest is just trying to get more people covered. The pre-existing condition exclusion blocks even the people who could pay for insurance as I was from being able to get in on it.


1 - The one vereran who had an iBot that I met (at the Halloween Party at the Playboy Mansion, a charity gala for Wounded Warriors) did not get the iBot through the VA, it was through donations and other assistance after an injury in Iraq left him paralzed with a full spinal injury. He was one of the last -- possibly the last -- person to get an iBot....

John Cowan on 22 Mar 2010 8:11 AM:

When I read horror stories like this, I thank Ghu that I live in semi-civilized territory, namely New York State, where pre-existing condition exceptions are forbidden.  (Insurance is basically a state-by-state issue.)  By the time I came to work for a California company, HIPAA was in place and I was easily able to prove continuous coverage, though of course it was a paperwork headache.  (Think how much insurers save on New York contracts by not having to jump through HIPAA hoops!)

Michael S. Kaplan on 22 Mar 2010 9:03 AM:

On the other hand, I have never considered New York City to be even semi-civilized :-)

Michael S. Kaplan on 22 Mar 2010 9:24 AM:

Though I wouldn't consider it a horror story in a classic sense -- in the end, I made it through, though not through any particular heroics or anything. True horror really needs to instill pity and/or terror, and this story doesn't do enough of either.

Now if you had to tack in a bankruptcy, or losing a house, or not being able to get treatment, or not knowing an eminent neurosurgeon to do the cutting, or not getting an iBot but being in a wheelchair, not being able to work anymore -- there may have been a shot. But with the story as it happened? Not so much....

Wesner Moise on 22 Mar 2010 10:15 AM:

Oh my god!

My personal fear is that once I get sick, the insurance company will cancel my coverage that I have been paying for years.

Rob Margel on 22 Mar 2010 10:20 AM:

So just to compare my UK situation with CML (Chronic Myeloid Leukeamia) and our NHS, whihc doesn't always get the best press but in my case saved my life.

Being in employment in the UK I have paid taxes to support the National Health Service and also have additional private company insurance via Microsoft if for what ever reason I need to go private.

I was diagnosed of the Leukeamia following a failed blood test when I tried to donate blood (I was a previouse blood donor) at Microsoft one time 3.5 years ago.

Since then all my treatment, tests including bone marrow extraction (ouch) and drugs (Gleevec/Imatinib) which cost the NHS annually in the region £30,000 . I even get my £7.20 3 monthly prescription paid for now as all cancer drugs are free prescription as well.

My only personal costs have been travel to the specialist center, all the rest of costs has been paid for by the NHS.

I now thanks to an early diagnosis and good response to the drugs have only 0.12% of leukeamia cells in my blood (was 70% at diagnosis).  So I have been able to lead a pretty normal life for quite some time without any treatment costs concerns.  Which if it where not for the NHS might not have been the case.

How some americans label the NHS as Evil is beyond me.

Just a comparison.


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