Thoughts On Pharmacology and The Search For A Cure

Cash

In the ten years since I was diagnosed, I have tried eight different medications to manage my symptoms and progression, and never gave much it much thought or questioned my choices until the last few weeks. What changed? I’ve noticed a number of posts from various bloggers about their experiences with the drugs they take for MS and other chronic conditions, and two truths have become painfully obvious.

The first is that pharmaceuticals are the primary, and in some cases, the only option provided to us. The second is that trying these drugs is similar to purchasing a lottery ticket, in the hope of hitting the jackpot, only to be left with a hangover.

I’m not anti-drug, just anti Big-Pharma. After all, doesn’t it seem ludicrous that the entire idea of legalizing marijuana, medical or otherwise, still meets a ton of resistance as it’s labeled as a gateway drug, yet scripts of opiates are dispensed like candy, creating an addictive culture that turns to heroin when the supply is cut off, and the outrage is muted? Don’t get me started.

As I was saying, I’m not anti-drug, and there have been a handful that have helped me, but let’s be honest. Even with the drugs the FDA has approved, we’re still participating in a never-ending clinical trial, serving as lab rats or human petri dishes for Big-Pharma and the medical community in general.

Is that a harsh assessment? Maybe, but we willingly take stuff we know may not do a damn thing, and make us feel like shit in the process, but don’t think twice if that occurs, and gladly move onto the next option. Maybe that option will be better, but if not we keep trying other things until we find something that works even a little. After all, what’s the alternative?

I know that the stuff that I’ve been putting into my body all these years isn’t healthy. The chemo I took for over eight years isn’t good for the liver, and necessitated monthly blood tests to ensure my liver enzymes weren’t all fucked up. I know Ocrevus isn’t much better. So yes, I do think about what the long term health consequences of what I’m doing might be, but that does not get in the way of continuing the path I am on or trying something new. It’s a safe bet I’m not the only person who feels this way.

That may sound desperate to someone not living this life, and I know holistic options exist, diet for one, that might be worth pursuing. But I’m brainwashed like everyone else in thinking that pharmacology is the best option. Either that or I’m following the gospel of my neurologist without reservations. I trust him and think, perhaps foolishly, that if the drugs were doing more harm than good he’d tell me.

Having said that, I believe that pharmacology is not going to provide the ultimate solution if a “cure” is ever discovered. I’m of the opinion that if a cure is out there, stem cells will provide the key. After all, if you’re going to try to regenerate myelin, I doubt a pill is going to do it. Doesn’t it make  sense that something organic will create something new and better? Be that as it may, I’m not holding my breath hoping that a cure will either be found in my lifetime, or happen before I’m primed for the Dirt Nap.

As far as brain lesions are concerned, I don’t think they will ever crack that nut. That organ is the final frontier in the medical community, and we are light years away from truly understanding how to treat it.

I suspect all of us ultimately reach a point where we’ll get off the medical treadmill of procedures, injections, infusions, and pills. I know the day will come where I’ll jump off and focus on rest, diet and more holistic approaches. But I will first have to conclude the results no longer justify the effort, and am tired of going to hospitals, tired of getting poked, prodded and stuck, and tired of the expense.

Reading the posts I mentioned also made me reflect on the economics surrounding finding a cure for anything. More specifically, there are millions being poured into research through grants and donations to find the elusive cure for various chronic and deadly diseases, cancer and MS to name two,  but don’t you sometimes think it isn’t in a lot of people’s best interest to actually find one?

If Big Pharma found the answer, which I doubt will happen but let’s stay on that thread, then that premise doesn’t ring true. I mean, can you imagine what they would charge for the magic pill or shot that prevents cancer or cures MS? They could name their price and nobody would flinch.

But what if, as I believe, the answers do not lie with pharmacology. What would happen to the big organizations that champion the chase for a cure? How much would they lose in funding and donations?

My intent is not to imply that those who run these groups are only in it for the money, but let’s be realistic. Isn’t it in their best financial interests to keep chasing that cure than to actually discover one? After all, a significant percentage of revenue goes to overhead for some of these organizations. What happens if the money runs out or the flow is reduced to a trickle? Maybe I’m in a cynical mood tonight. I’d like to think it wouldn’t matter, but isn’t that naive?

It’s an interesting discussion, but probably pointless. After all, the medical community would actually have to find something that works, and in the immortal words of the neurologist I saw at Johns Hopkins during the early stages of my MS journey, when has medicine cured anything?

 

The Healthcare Conundrum

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In 2017, the Kaiser Family Foundation reported that more than a quarter of U.S adults, including those with medical insurance, struggled to pay their medical bills. Medical debt, they continued, was the number one source of personal bankruptcy filings, and in 2014, an estimated 40% of Americans racked up significant medical-related debt.

I’ve worked in healthcare for over thirty years, primarily for hospitals, in the revenue cycle arena, which in general terms are the areas that schedule, admit/register, code, bill and collect the cash for the organization. I am therefore intimately familiar with what goes into getting services paid correctly. Even though I was generally aware of what Kaiser reported, I never gave it much thought until MS came along.

Now, as a person who suffers from a chronic medical condition that will get worse over time and who requires more medical services than the average person, I can’t predict how this condition will impact my ability to work or earn between now and the time I would like to retire. So the inconvenient facts Kaiser points out are personally frightening.

In a country as wealthy and technologically advanced as ours, how can this occur, and why does the World Health Organization (WHO) rank our healthcare system 37th world-wide? I’m certainly not an expert, but do have an opinion.

The simple answer to a very complex problem, is that our system is profit-based, and the players in the big healthcare sandbox don’t play nice together. Everyone is trying to make money, keep what they have, and to get away with spending as little as possible while making as big a profit as they can.

Medical students graduate with massive debts, work their asses off at ungodly hours to matriculate to a point where they can enter a practice, start digging out, and hopefully earn a very comfortable living while pursuing a career they are passionate about.

Hospitals run sophisticated 24-7 operations that are labor and equipment intensive, in a culture where most not only think that access to healthcare is a constitutional right, they also believe they shouldn’t have to pay much for it. The equipment I’m talking about, like MRIs, aren’t cheap. Neither are computer systems. In order to gain efficiencies, large healthcare systems are being created, which results in more of a corporate culture, led by individuals who often make seven figures.

State and federal governments run and administer the Medicaid and Medicare programs that cover more than fifty percent of the patients treated at most providers, but don’t come close to covering their costs. Their resources are dwindling, so they continually force providers to accept less and less.

Big pharma meanwhile charges more than the cost of a luxury car for many of their drugs that get dispensed at healthcare facilities, but, in my opinion, escape the vitriol heaped on most hospitals.

Then you have the major insurance companies, who have stockholders they need to keep happy and are bottom-line driven. Their idea of the ideal policy-holder is someone who is young, healthy, and never files a claim. They loved someone like me when I was between the ages of twenty one and forty-nine. In the last ten years, however, I’ve narrowed the gap between the revenue they earned from my policy premiums versus what they paid during my healthy years. If administered truth serum, I am sure they’d admit that they would drop people like me if they could.

Everyone has different missions and agendas.

I can get into a lot of minutia regarding how charges are established, try to detail the maze of what has to occur in order to get a service approved, and explain all the things that can and do go wrong during the billing process. In fact, I’ve already attempted this three different times, but what emerged was something so convoluted your head would hurt if you read it. So I will try to keep it simple and basic.

Assuming all the necessary authorizations and approvals have been received, the provider submits a bill for “w,”the payer approves “x,”pays “y” to the provider, and the patient gets stuck with “z.” The actual payment is influenced by things like whether the provider is in network (where more is approved/paid) whether deductibles have been met, the percentage of approved charges the patient is responsible for, and if the patient’s total annual out-of-pocket maximum has been met.

If you are hospitalized, you can get separate bills from the hospital, your doctor, the anesthesiologist, the radiologist, and maybe even an ambulance company, all of whom submit their own claims to your insurance, who will process and pay them in different ways. There will be outstanding balances after each of them does their thing, and if you have a second insurance, your primary plan will either submit the balance to them in the form of a claim on your behalf, or you’ll have to do it yourself. Either way, you pay the freight of whatever remains.

No insurance program pays the same thing for the same service. As I previously mentioned, Medicaid and Medicare programs do not cover cost, so providers are forced to recoup those losses from private insurers in order to stay afloat. This is what is meant by cost-shifting. Providers have to figure out the complex calculus of projecting revenue by payer, service line and volume of patients, combined with what they anticipate will be written off to bad debt or charity to achieve a certain bottom line. This may not be rocket science, but it is just as hard.

Now, allow me to share a personal experience that illustrates the frustrations of many when it comes to healthcare billing and what is owed.

I’ve been getting apheresis and infusion treatments once a month for years, and knew they would be expensive before I started. When I saw what was being billed, I wasn’t surprised, and it did not appear excessive based on what I’ve witnessed during my career, so didn’t think twice about it.

My drug of choice changed from Cytoxan to Ocrevus last year, but the first administration of this dose was split over a two week period. The bills for those infusions were more than what I was used to seeing, but not enough for me to take notice. Last month, however, was the first time I received the full dose in a single infusion, in addition to the apheresis, and I don’t have to look at an itemized bill to know that the reason the total charges for this service was almost three times more than previous treatments was because of that drug. Anthem covered the service, but approved less than ten percent of the total charge. The difference, which was six figures, was written off. If I had no insurance, I would have been responsible for the entire thing. Then again, if I didn’t have insurance, the treatments would not be an option.

Meanwhile, tucked between that breakdown on the Anthem Explanation of Benefits (EOB) was a $2,285 charge for the physician part of that service. That charge was not unusual because I’ve seen it before, but maybe it pissed me off this time because of the other bloated charge. Why? Because the physicians that provide the service being charged don’t do anything.

Here’s what happens every time I get treated:  A young doc, typically a resident, or fellow, stops by once I’m hooked up, asks me how I feel, asks if there have been any changes or if I have fallen since the last time I was there, listens to my heart and lungs, feels my ankles, and asks me if I have any questions, the answers for which are “the same,” “no,” “no” and “no.” Many of them appear shy and unsure of themselves. Their perceived insecurity gives the impression they would rather be doing anything other than speaking with me, and that they are doing this only because they have to. I am admittedly painting with a broad brush here because a handful of them have been engaging, articulate and ooze confidence, but those have been in the distinct minority.

So I was billed almost five hundred dollars a minute for a physician who didn’t do anything, didn’t add any value to my experience, and was there purely for protocol purposes. I complained, but knew I was chasing windmills.

Anthem approved about forty percent of that charge, so my total out of pocket hit for these two bills was about $1,100, and I’m fortunate. Believe it or not, I do have very good health insurance. I also know that the out of pocket expenses for my policy, outside of co-pay and prescription drugs, are capped at a certain number each year, and I budget accordingly. Not everyone has the same luxury.

Is there a solution? Probably, but doubt I will ever see it in my lifetime unless the country goes bankrupt. Too much money is involved, healthcare employs a lot of people, and lobbyists swarm Capitol Hill to protect their vested interests. It’s a multi-billion dollar industry. Why else would providers and insurers fight like hell over fractions of percentages in claim denials and during contract negotiations?

Besides, any rational and intelligent discussion regarding healthcare expenses have to involve limiting, otherwise know known as rationing, healthcare service, and nobody has the political stones to go there. Remember the “death squads” that were frequently mentioned during the politically-charged debate about universal healthcare in 2009?

What I can see occurring is a two-tiered system. One will involve a single payer concept that oversees governmental-run organizations, operated in a manner similar to the Canadian system, where access is not immediate and treatment could be denied based on person’s age and prognosis. The financial burden would be a fraction of what currently exists, however, which would go a long way to reducing personal bankruptcies and solving the dilemma of healthcare consuming an ever-growing percentage the federal budget. Maybe the doctors and clinicians who work at these institutions will do so as a means of paying off their massive debts.

The other tier will encompass a provider network that is brazenly profit driven, where anyone with means and private insurance can get what they want, whenever they want it, but at a cost. Everything is known and agreed to in advance. These will become your proverbial five-star Marriot/Hilton type facilities, while the former will be more like your Motel 6’s. I’m being sarcastic, of course, but there is more than a grain of truth in that premise.

Meanwhile, small community hospitals will continue to die a slow death or get gobbled up by larger systems. Healthcare in general will become more expensive, corporate and top-heavy.  Consumers will have fewer choices and we’ll continue to meander along our current path.

I hope I’m wrong.

Is it Me?

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It is me, or do people you don’t know very well say “I’m sorry” if they ask what is wrong with (fill in the blank – with me it is my leg) and you tell them you have MS?

Is it me, or do the “I’m sorry” people end the conversation immediately, and try to discreetly move away as quickly as possible?

Is is me, or do you find all that annoying?

Is it me, or are more non disabled people using the handicapped toilets in public restrooms? Boy, does that piss me off (no pun intended). And when did being a large person become a disability?

And speaking of bathrooms, is it me, or does it seem like you are as far away as possible from the nearest bathroom when you need one and are at work or in a public place?

Is it me, or do more non-disabled people park in handicapped parking spaces than before? Either that or I happen to notice it more because when it does happen, the next available spot is a long walk from where I need to go.

Is it me, or do you hate the term “handicapped”?

Is is me, or do you have a greater awareness of other people who have a disability of some kind? I sure hope it isn’t because there are more of us than ever before.

And speaking of awareness, is it me, or are you more aware of your surroundings since you were diagnosed? I have to be, especially when there are a lot of people around, because one mistimed bump or stray cord laying across a floor might create an embarrassing fall.

Is it me, or do you find people going out of their way to open a door for you in a public place?

Is it me, or does that annoy you? Listen, I appreciate the motivation behind the gesture, and there are times, like when my hands are full, that I am happy for the help. But I’m not an invalid, and like to fend for myself most of the time. Is that being overly sensitive?

Is it me, or are you paying a lot more attention to healthcare politics than ever before?

Is it me, or are you more aware of your insurance benefits, and all the rules and regulations regarding getting services approved for payment, than before you were diagnosed? (Confession: this is a cheat question because in my line of work I have to know all this stuff. But I need to fill the page, and thought it was an appropriate question.)

Is it me, or do your parents (if they are still alive, or were alive after you were diagnosed) treat you like a little kid because of your disability?

It is me, or has your diet become a lot more important than it used to?

It is me, or does your body ache more when you get out of bed in the morning than it did when you went to sleep the previous night?

Is it me, or has the amount of medication you’re taking increased exponentially since you were diagnosed?

Is it me, or do you not bother to read all the literature that comes with those drugs? I typically don’t, and never have, because reading it can make you think the stuff you are about to take will cause something a lot worse than what you have. Aren’t lawyers wonderful?

Is it me, or do you not fully understand why some of the stuff you are taking is supposed to work?

Is it me, or do you discover that the stuff you are taking actually does work, but only after you stop taking it?

Is it me, or does it seem that most, if not all, of the options available to ease your symptoms involve pharmaceuticals?

Is it me, or do you appreciate friends and family more since you were diagnosed?

Is it me, or are there a lot of things you used to fret over that are no longer important?

Is it me, or did you begin thinking about your mortality much sooner than you could have imagined?

Is it me, or did going to the bathroom become a much bigger production than you thought possible?

Is it me, or did going down the stairs become potentially life-threatening?

Is is me, or does the same thing apply to taking a shower?

And since we are on the subject of hygiene, is it me, or can you no longer wash the bottom of your feet?

And, is it me, or do you not even think about taking a bath anymore because you won’t be able to get out by yourself? Or because of what the heat of the warm water might do to your symptoms?

Is it me, or is condo-living starting to sound pretty good?

Is it me, or has walking on a snow covered sidewalk, driveway, or parking lot, become like walking on a tight-rope, or in a minefield?

Is it me, or do you only fall when you aren’t paying attention?

Is it me, or do you want to crawl into a hole and disappear when this happens in public?

Is it me, or can you gain weight more easily than you used to?

Is it me, or do steroids make you ravenous?

Is it me, or do you bleed more easily from all the drugs you take?

Is it me, or were you resistant in the beginning to accept help because of the misguided notion that you would be giving up your independence?

Is it me, or has that shit stopped?

Is it me, or do you think that your spouse and kids were somehow cheated because of your disability?

Is it me, or do you feel profoundly guilty that you can’t do as much around the house as you used to, and your spouse/family have to pick up your slack?

Is it me, or are you doing more than you probably should because you try to minimize the slack they have to pick up?

Is it me, or has daily life become a lot more expensive since you were diagnosed?

Is it me, or do hallways seem overcrowded when another person enters your space?

Is it me or do you no longer walk in the middle of a hallway? I’m always off to the right side, hopefully with a handrail or a wall within easy reach.

Is it me, or are airports a lot more intimidating?

Is it me, or does it take you longer than thirty seconds to get into a vehicle?

Is it me, or do you avoid support groups. I think I don’t go to them because I don’t believe I’m that bad off, and seeing others who are would scare the hell out of me. It’s that denial thing I keep talking about. Who knows, maybe I’d be pleasantly surprised.

Is it me, or did you become a expert on all matters related to MS within a very short period of time?

Is it me, or isn’t a lot or this really comical?

Is it me, or doesn’t a lot of this really, REALLY suck?!

 

FYI: One of my readers, whose mother has progressive MS, started a company, in part to  help her mom stay independent and as safe as she possibly could, with help, of course. She sent me a link ( http://www.helpmedicaldevices.com ) to the company. I checked it out. While it lists a lot of stuff that might be better suited for frail seniors, there is also a lot on the site that people with MS-related mobility issues could find helpful, so I thought I would pass it along.

 

 

 

MS Gear, and What I Most Dread

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As a person whose symptoms impact my mobility, I’ve accumulated  some gear over last decade.  They are placed side by side in the accompanying photo, in the order in which I obtained them.

My first noticeable symptom was a droopy foot, which tended to drag across the floor when I walked. An AFO brace solved this dilemma. It gave my foot a permanent lift, which helped prevent me from stubbing my toe on the floor or having it get stuck in the carpet, which could result in a fall. I still use this today, although  the Velcro straps and padding have to be replaced occasionally.

As my foot and ankle became weaker, I purchased a cane. At first, I only used it when I was outdoors, because that was where I ran the greatest risk of spraining an ankle or stumbling over something that might cause me to lose my balance. Now my balance is shot, and I use it all the time when I am not in my house. I can walk without it as long as I am on a flat surface, although it is a struggle over long distances, but I use the cane more as a way of keeping my body from listing to the left, and also to help take some of the pressure off my back and hip. I have three that I use now.

By the way, if you need one, and want something with more fashion and style than the shiny metal variety with the grey plastic handles, you can’t beat the selection offered by The Fashionable Canes web site.

Next, after a lengthy battle with my insurance company to get the purchase approved, came something called The Walk Aide, which is a device that I strapped onto my leg below the knee. The Walk Aide sends electrical impulses down the leg, which lifts the foot.  This was a godsend when I first started using it. I didn’t need the foot brace or the cane, and I could literally jog with it. Unfortunately, once the progression reached my knee, it rendered the Walk Aide useless because my entire leg was screwed up, not just the foot and ankle.

Once the symptoms reached my knee, and made the joint feel like a hinge without any screws to hold it together, I obtained a knee brace brace. When I first strapped that beast on, it felt bulky and unnatural, but this changed after a few weeks, and I hardly notice it now. When I am at work, or am going to be in public for any length of time, I wear both the AFO and knee brace.

It takes about ten minutes to get both of these on or off, and is a bit of a production. The most maddening thing in the beginning was that both items had Velcro straps, which kept getting stuck together. I didn’t know which one belonged to the AFO or the knee brace, and wound up mistakenly taking some of the straps completely off the knee brace. Unfortunately, I never bothered to see how they were attached in the first place, so it took a lot of trial and error getting Humpty Dumpty back together again, stretching my patience thin. It was a good thing no sharp objects were within reach.

When I am in full battle regalia, my right leg is covered or supported by something from my toes to just below my crotch, and I have a cane in my left hand. Maybe I’ll wear a full suit of armor some day. Wouldn’t that be a sight for sore eyes.

I know the odds are not in my favor on this, but what I am trying to avoid is having to add the dreaded wheelchair to this list. Or as least defer it for twenty years or so.

Why do I find the prospect of wheelchair so alarming? Realistically, it would make getting around much easier, provided the environment I’m in is wheelchair friendly. Not having to walk so clumsily might also be easier on the back and hips, which constantly bark at me. Maybe I’d find it more palatable if I only needed or used it some of the time, where it was an option instead of a requirement.

Does what the wheelchair symbolizes bother me the most? A little piece of me dies every time the symptoms progress, because the functionality that is lost doesn’t come back. I know that. But there is something about walking on your own two feet that gives you a sense of independence you don’t realize is there until it becomes threatened. Will having to  rely on a wheelchair signify that I have lost the battle, that MS has gotten the best of me, and that the me who used to golf, go for walks, ride a bike, mow the lawn, and take care of all of the yard work, is dead?

No, that’s silly, because the truth is that I can’t do most of that stuff now, and haven’t been able to for years. But, my mind tells me the potential is still there, because I still have the use of my legs. In fact, I still do some outdoor work, and shovel snow. I can still vacuum the house, and clean bathrooms, although not very well. I’m running errands all the time. I push myself to do these things, in part to prove to myself that I still can, but to also feel useful.  If a wheelchair entered the picture, will all of that be gone?  I know the only way I will sit in one of those fucking things is because I have no other choice. How useful will I be then?

I hate being less than whole, and I hate being dependent. It’s one thing to have that happen when you’re really young or really old, but I’m neither. I should be at the stage of my life where I should eagerly plan for retirement, and look forward to the options that come with those years, instead of worrying about becoming a burden to those I love, and drain my finances in the process. All of these certainly impact why I find the idea of a wheelchair so abhorrent, but one reason stands above all.

I mentioned in a previous piece that I keep the fact that I have MS at arm’s length. I know it’s there, but have conned myself into thinking it isn’t that big a deal. I know it can get worse, and am aware of the other nasty symptoms I could come down with. I have blinders on when it comes to all that however, because the fact is none of it currently applies.

The reality of a wheelchair would burst that bubble, and shred my comfy cocoon of denial. I’d wake up one morning and realize, “Holy Shit! I’ve have MS!” Plus, it would make daily living much more complicated, and I have enough complications in my life.

I’m the stubborn sort though, so what will happen is there will be a period of grieving, then I’ll make lemonade out of the lemons dumped in my lap. My glass is always half full, you see, so something positive will come out of it. Maybe I’ll enter wheelchair races to…….well, just because.

I’ll figure something out. Resiliency is important when MS is your constant companion. I’m sure as hell not going to be someone who is miserable to be around.

I just hope that I don’t have to worry about it any time soon.

 

POST SCRIPT TO THE ACCESS TO HEALTHCARE PIECE: Congress is as it again. It is very possible that the latest proposal, which is to eliminate the Affordable Care Act and replace it with block grants to the states, will come to a vote next week. The only way that will occur is if the votes are there to pass it by a simple majority vote. If passed, this in all likelihood will allow insurers to have pre-exhisting condition clauses, effectively excluding us from the market. If that doesn’t scare you it should. If you don’t like this development, please make sure you let your Senator know ASAP, particularly if he or she is a Republican.

 

MS and Access to Healthcare

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I normally avoid writing anything that can be considered remotely political, but I’m making an exception in this case because living with a chronic condition, and having unfettered access to healthcare, is not a political issue. It’s a moral and ethical issue.

When efforts to “improve” the Affordable Care Act captured the spotlight earlier in the year, I could not believe Congress was seriously considering giving insurers the option of waiving the requirement that forced them to provide coverage for people with pre-existing conditions.

Don’t they know that treatment for something like MS can make the difference between living a productive life versus becoming dependent on Medicare disability or even Medicaid, which would cost taxpayers more long term?

Don’t they know that nobody chooses to be in this position, and how vulnerable we are to their political whims?

Don’t they know that even with good health insurance, the out of pocket costs for many of us can be daunting?

Don’t they know that one of the leading causes of personal bankruptcies are overwhelming healthcare bills?

Don’t they know that nobody, save for perhaps the very wealthy, can foot the bill for the treatment we need to halt or slow the progression of our condition?

Are they that blind? Even worse, are they that ignorant or mean-spirited?

Listen, I’m all for reigning in healthcare costs and government waste. I know there are a lot of people who feel government should not be intruding into people’s lives and dictate what they or businesses should or shouldn’t do. But I don’t think it is a stretch to say that anyone who feels that way would change their tune if they were in our position.

Quite frankly, if our elected officials in Washington all had chronic health conditions like MS, access to healthcare would not have strings attached. It would probably become law in a heartbeat.

Our treatments can be very expensive. Without health insurance, there is no way in the world I could get the care I’ve received over the last decade. Seriously, having to pay for one month of treatment would be disheartening. As it is, my yearly out of pocket medical expenses are significant, but what choice is there? Is it right to put someone in a position to make a choice between eating and getting the healthcare they need?

Health insurers will say otherwise, but their primary goal is to make the largest possible profit. They want their premiums, but they also want to pay as few claims as is legally possible. I admit to being biased about this, because I have worked in the healthcare revenue cycle arena for over thirty years. But I do know what I am talking about.

It’s complicated enough to get approval for treatment, and getting the bills paid. Insurers play games all the time, trying to avoid paying a claim or denying treatment that should be covered, often putting patients in the middle and causing undo stress in their lives. If you have doubts, someone who once worked for a large health insurance company, and was responsible for processing and paying medical claims, told me (he was out of the industry by then) he had a monthly denial quota to meet. In other words, his unit had to deny claims, regardless of whether the denial was valid, to hit his number.

I’ve endured a few of these games myself, and it took weeks of persistence on my part to get them to overturn a decision that was wrong to begin with. Fortunately, I had the knowledge to cut through the bullshit and run-around I was getting. And if that didn’t work, I knew who to contact in the state to intercede on my behalf. I can only imagine what it would have been like had that not been the case.

Healthcare is big business, and everyone wants their piece of the pie. The discussion over pre-existing conditions pissed me off because regardless of the rhetoric, this entire debate was about greed, not common sense.

This is not meant to be a commentary about how expensive healthcare is. I think everyone would agree the costs are insane. It is not a critique on what is wrong with the system (a lot), or who should pay for what. Nor is it a recommendation that everyone should be required to have healthcare coverage, although I do have a strong opinion about that. I am not advocating anyone should get a free ride either, because I don’t think we are entitled to anything.

What I am saying, is that if you give health insurers the choice of deciding who or is not eligible for coverage, and/or give them the option of pricing the coverage for those with chronic conditions, they will not do the right thing. Instead, they will either say you can’t be covered, or set their rates so high that nobody could afford them. So don’t put us in that position. The only thing we are entitled to is to have the same access to coverage, and the same financial obligations, as those who aren’t living with something like MS.

Fortunately, it appears that this storm has passed, but I don’t think the issue is dead. Each and every one of you should stay on top of it, and e-mail your senator and congressperson, letting them know how you feel on matters as they develop.

You voice could make a difference between getting access to the care you need, or be shit out of luck, unable to afford what you need, and left hoping your MS will be merciful and leave you alone.

I think we all know how that would work out.