Healthcare Case Study (A BG Social Experiment)

[Absolutely Virtue]

I'm challenging you, loyal BG reader, to discuss the current ZOMG HEALTH CARE REFORM EXTRAVAGANZA in a scholarly, productive way. I'll present a case study, and ask what you would do about the situation. This is a common tool in policy school, although I've simplified the case study to account for internet TLDR syndrome. And in the spirit of full disclosure, I'll tell you that the case study is my own story. That's not ideal for our purposes, but at least you know it's genuine and somewhat typical.

This worked for me earlier today on Facebook, so I figured I'd try it here. I'll establish some ground rules, though-

1) No personal attacks.

2) No partisan bullshit.

3) No memes.

4) No shitting up the thread.

5) No sympathy. That's not the point. But you can send me gil if you want np.

The goal is to see if we can discuss this in an open, honest, intelligent manner. I know a lot of you are diametrically opposed politically, and can't stand the sight of each other. But that only adds to the realism- it's not as if everyone in Congress loves one another. See if you can argue your point, raise counterpoints, and treat each other with respect. I'm as curious about your answers as I am about whether or not this will work.

The background:

Just over 8 years ago, I was diagnosed with Chronic Myeloid Leukemia (CML), a rare cancer of the bone marrow. The timing was significant, because it coincided with the development of a revolutionary new medicine called Gleevec. This drug is unique for two key reasons:

-Gleevec only targets cancerous cells, effectively stopping them from spreading and sparing healthy cells in the process. This means it has far fewer side effects than earlier cancer treatments, although there are indeed some effects and they tend to get worse over time. But the bottom line is that Gleevec patients can typically lead normal, if not sick, lives, unlike other patients going through bouts of radiation or other traditional forms of chemotherapy.

-Gleevec is not a "cure" for cancer, and clinical trials have shown that discontinuing use of the drug results in a return of the cancer, often in a stronger form than was originally present.

With the aid of Gleevec, I have been able to lead a fairly normal life. I can exercise, and hold down a job. The side effects have gradually gotten worse, but they are manageable for the most part. However if I project my course of treatment out to, say, another 8 years, I imagine they will become a real problem. On a scale of 1-10, I'm probably at 3 or 4 right now. If I get to 7, work will be difficult. At 9 or 10, it will be impossible.

I have to work, because I could not afford the Gleevec without insurance. On the open market, I would be paying between $5,000 and $6,000 for a one month supply of pills (600mg daily). With my current provider (Aetna), I only pay a $30 co-pay.

I have noticed my health decline over time, and I am certain this will only continue as I get older (I'm 34). I face the very real possibility of eventually losing my ability to work, and with that, my insurance. At that point, I face two options:

-I can join my wife's insurance plan, and shift the cost of my healthcare (about $50,000 annually for medicine, thousands more for oncologist visits) to her co-workers. They will foot the bill for someone who does not contribute to their company, and may see an increase in their rates as their cost of care becomes more expensive.

-I can attempt to pay out of pocket for my medication, but at the current prices I won't be able to do that for long. Without access to Gleevec, my long-term survival rate is effectively zero.

I've been working since I was 15 years old. I'm an American citizen, I have a clean criminal record, and I don't even take itemized deductions on my Federal tax returns. I vote, I give money to charity, I work in public service, and I need to take medicine every day or I will die of leukemia.

The question:

Do you think the current healthcare system adequately meets my current and future needs? Do you think there is room for improvement? If yes, what would you improve, and how would you do it?

[Acturus]

Looks like I go first...

Do you think the current healthcare system adequately meets my current and future needs? Do you think there is room for improvement? If yes, what would you improve, and how would you do it?

To paraphrase and sum up: The case is one where a rare form of cancer with no cure is being treated with a relatively new drug (wiki tells me Imatinib wasn't identified until the last decade), but the effects of the drug are not a cure for the illness, and the drug's side-effects are cumulative based on how long the patient has received the medication.

My assumption is that you were prescribed the Imatinib in an effort to keep the illness at bay, partly to enjoy a "normal" quality of life for longer, and to delay the effects of the illness in the hopes that "something better" might come along.

With this in mind, yes, the current healthcare system adequately meets your current needs. Specifically, when an insurance company decides to cover dependants of employees, people like you, while actuarial outliers, are somewhat expected. I also disagree with the statement that someone in your position is a "burden" on your wife's co-workers, unless you somehow are the only non-employee using your wife's insurance as a resource.

The nature of the current system accepts people in your position. Therefore, regardless of how unique your situation is, it's still being covered under the total umbrella of how employer-based-insurance-as-a-benefit-of-employment works.

In the same vein, I believe the current healthcare system could adequately meet your future needs, provided that medical science advances faster than your specific case. Experimental procedures and medications are almost never a covered benefit under health insurance. The only inadequacy that I can see in your specific case is that certain specific experimental procedures could be viable treatment options, but the emphasis on that is the word "specific".

To digress a second, experimental procedures are simply those procedures that are not documented well enough to be accepted by the medical community. It is by no means an automatic qualifier that the procedure is completely off the wall, simply that it is undocumented.

With that in mind, one change to the current system that I believe would benefit this specific case would be to allow a greater flexibility in covering experimental procedures provided that such coverage was grounded by a positive history of trying all other applicable options. That doesn't happen as a rule in today's system.



Now, the system is not ideal for your situation. I want to say that the drug Imatinib should not cost as much as a new Lexus each month (unless that reflects the cost of production), but I don't know enough about patents and ownership of innovations to make an accurate claim.

Ultimately, the business of keeping people healthy sucks, because the health industry is subject to the same models and principles that keep car manufacterers and fast-food restaurants working. Unfortunately, that's more of a philosophic discussion than anything else, and I've never been well-equipped to handle such abstract discussions.

[Absolutely Virtue]

If I can simplify this a bit, it might help. My biggest personal concern right now is not the "next" drug after Gleevec (although there are several in the pipeline).

My concern is being too sick to work, but yet not sick enough to die. Quality of life is an issue, but my question was more geared toward that period when I still need to take the Gleevec, but can't get it through insurance and can't afford it on the open market.

You raise a very good point about experimental treatments (and by extension, clinical trials). But that's probably a bit more complicated than I wanted this discussion to be. It's definitely far less black and white than the issue of "What should I do when I'm too sick to work?" If I had a chance to write the OP over again, I'd make that distinction for the sake of simplification.

[kuronosan]

Myeloid leukemia thankfully has a good prognosis if they find the right type of treatment. Has your physician explored the idea of a full marrow transplant? We're studying this condition right now and they've done studies suggesting that full marrow transplants with stem cells can not only change your blood type but can remove the malignant leukocytes.

That aside, so I can answer your question:

Do you think the current healthcare system adequately meets my current and future needs? Do you think there is room for improvement? If yes, what would you improve, and how would you do it?

I think the health care system indeed meets your current needs, but it will not ever meet your future needs without serious pharmaceutical reform. This country shouldn't be about "whoever has the most money lives". I think there's plenty of room for improvement in this area.

First, the biggest improvement I would make would be in long term care. I think in the event that a diagnosis is made where long-term treatment is necessary the cost of treatment should be discounted significantly, especially if long-term prognosis is either death or gradually-worsened conditions. If someone can't pay insurance because they can't work, it doesn't seem very life-saving does it?

I would think, for example, if you have to pay $10,000 a treatment, that if insurance paid $7,000 of it, then you should only be responsible for even less than that (maybe about $1,000). Or if your pills were $5,000, for example, your insurance should pay for somewhere in the vicinity of 70-80% of what they cost (or you should get them at cost) to manufacture and distribute while you pay the remainder (which, theoretically, would be anywhere from $500-1000).

I also think there should be grants given to long-term patients with either terminal or life-threatening illnesses that offset the costs as compared to short-term or one-time patients. No, I don't mean balancing it so that a flu shot costs someone else $500 while a chemo session should cost $500. I mean if you have to get one shot a week for the rest of your life (or 10-20 years, or whatever) then the cost of those shots should be evenly distributed so that you can afford the medication. Say the shots are normally $5000 if some guy needs one. Well, spread out over 10 sessions, that would be $500 a shot. I would think it to be more affordable and prudent for that to be cut down to about $250-300 a shot for long-term patients.

I hope I'm explaining myself well. I have a bad habit of convoluting my thoughts.

[Therin]

I miss you Virtue.

[Acturus]

You raise a very good point about experimental treatments (and by extension, clinical trials). But that's probably a bit more complicated than I wanted this discussion to be. It's definitely far less black and white than the issue of "What should I do when I'm too sick to work?" If I had a chance to write the OP over again, I'd make that distinction for the sake of simplification.

I see what you're going with, and this sort of herds me off a bit, because it's more of a discussion of trying to apply the "you get out what you put in" principle, which I don't think works in your situation, or with health insurance in general. Health insurance is a "pay now, just in case later" deal.

In dealing with healthcare and this principle, there are policies out there called HSA (Health Savings Accounts), which garnish an employee's wages directly into an account to be spend on health costs. It's typically offered as a cheaper alternative to risk-based insurance because there is little administrative cost, and it's your money, not a piece of a shared pool of risk.

I would be interested in seeing what would happen on a larger scale, where accounts were created early to be used later, or cashed in earlier in special circumstances, almost like 401K plans or other such retirement-based investments, but that would require a lot of fancy footwork in the world of beauracracy to handle.

And honestly, I don't know why insurance is a "pay now, just in case later" system, because eventually, we all need medical treatment. It could be better served by modeling health insurance after life insurance, instead of something like car or flood insurance.

[isladar]

I'm not trying to be facetious, but shouldn't the "plan" in the phrase "Health Care / Insurance Plan" by definition be something that takes into account future needs?

[chiyio]

For the people who may be thinking his needs are being covered just fine under under the current system, how do you account for he's basically gambling on not losing his current job before he has to stop working for health reasons.

Should OP lose his job, through any means, such as his company going under for instance, he will not be able to get insurance again.

He's covered okay for now, but the second he loses insurance for any reason, no other company is going to cover him and his "pre existing" condition.

This could happen long before he's actually unable to work due to the long term side effects of his current treatment.

He'll be stuck in the situation of being able to work, but unable to get insurance through no fault of his own.

Should his company lay him off tomorrow, he's basically fucked. That doesn't seem like the system is working to me. He could get COBRA for a bit, but it's retardedly expensive, especially for somebody who also just lost their job.

I'd be surprised if OP can even get on his wife's insurance. I'm kinda under the impression they can deny coverage since this is all a pre-existing condition. Somebody with more experience in the health care industry can correct me.

I'm lucky enough to be extremely healthy (eat right and exercise ftw), so my experience with the US health system is very small.

[kuronosan]

That's why he is okay for now. The system is working for him at the moment.

[Vito]

I say that once you're too sick to work, go on your wifes insurance and ride it out. Personally, I pay into health insurance and almost never go to the doctor but continue to keep coverage just in case something serious were to happen. I would feel much better knowing that the $ i contribute to the insurance went to helping someone that needed it than paying for a raise for some insurance executive.

Edit: didn't think about pre-existing condition, i would hope that wouldn't keep you from going on your wife's ins but probably could..

[Acturus]

For the people who may be thinking his needs are being covered just fine under under the current system, how do you account for he's basically gambling on not losing his current job before he has to stop working for health reasons.

Should OP lose his job, through any means, such as his company going under for instance, he will not be able to get insurance again.

He's covered okay for now, but the second he loses insurance for any reason, no other company is going to cover him and his "pre existing" condition.

This could happen long before he's actually unable to work due to the long term side effects of his current treatment.

He'll be stuck in the situation of being able to work, but unable to get insurance through no fault of his own.

Should his company lay him off tomorrow, he's basically fucked. That doesn't seem like the system is working to me. He could get COBRA for a bit, but it's retardedly expensive, especially for somebody who also just lost their job.

That's a pretty steep hypothetical. Yes, these are valid points, but not terribly likely, given the information we are presented with.

I'd be surprised if OP can even get on his wife's insurance. I'm kinda under the impression they can deny coverage since this is all a pre-existing condition. Somebody with more experience in the health care industry can correct me.

I'm lucky enough to be extremely healthy (eat right and exercise ftw), so my experience with the US health system is very small.

It depends really on the agreement that the wife's company has with their insurer. My wife transferred from her parents' insurance to mine when we got married, and had a hospital stay for a severe migrane denied initially for Pre-X. All we had to do was show that she had coverage in the past year and it was refiled and paid for.

If the OP is in a similar situation, under most employer policies, as long as he and his wife aren't delinquent in changing their benefits (which usually happens at one time in a year, barring significant circumstances, and this might qualify, but it depends on the employer's rules), then the new insurance shouldn't deny the coverage.

Bear in mind that is is my opinion based only on my one experience in a similar (but significantly less costly) situation.

[Max™]

Why is this drug so expensive?

Made from the pubic hairs of cloned baby mammoths?

What the shit?


My girlfriend takes Abilify, do you know what happens when you go off Abilify because you can't afford it?

She tried to go off of it because the insurance fucked shit up and we weren't able to pay the full price, which is something like $40 a pill or more. On top of other prescriptions.


She starts having spasms, can't stop grinding her teeth, is hearing voices, phantom noises, and a quick read through the (thick) packet of info that comes with it says this shit can become permanent if dosing is ended.


So, I'm totally aware of what it means to go off of a drug, I've had to sit and watch the horrifying and painful experiences second hand, can't even imagine what it is actually like to experience it.


Why are the drugs so expensive?

That's just what occurs to me.

[kuronosan]

Because with only one or two companies actively making copies of that drug, and often owning the rights to distribute non-generic forms of it, they can charge whatever they want without regulation.

If you ask me, that's one of the major problems with health care right now - insurance companies being the other.

[Max™]

Oh, incidentally we were able to get it for much cheaper through the wonders of the internet as I recall. Her mother talked to someone, the Doctor she goes too gave her a kind of "wink wink" tip about it confirming it was possible, so we do that.

It's still expensive, but something like a couple hundred a month vs well over a grand for 30 pills is much better.

[Acturus]

Why are the drugs so expensive?

That's just what occurs to me.

Part of the initial cost of a drug goes into the per-item production cost, like any other product.

Another (more significant) part of the cost goes to repay the investment into research. This is usually associated with the branding of an item. In this case, the drug is Imatinib, but is marketed as Gleevec and Glivec.

As with anything unique and valuable, there is always also a commodity markup, as well as a supply-and-demand association. This sort of mark up can go towareds further research in other products, but also accounts for company profits.

It sucks that private research companies will get there first and be able to do this sort of thing, but it's how it tends to happen.

[Max™]

Yeah, research is a nice excuse, but the profits and markup is rather...

I guess vile is a good word.


I mean, if she went off this drug now, she'd be effectively crippled, like the backwards walking chick with seizures, suicidal thoughts without constant therapy (I had to sit and talk with her non-stop to keep her from feeling like she was trapped in the room she was in, a lamb marching to slaughter, a cog without a place, all sorts of dark ideas), and no alternative but to pay whatever price is deemed appropriate?

[Odon]

Why doesn't she taper off the drug? Or has she tried that?

[OctavoGilgamesh]

That's why he is okay for now. The system is working for him at the moment.

That is the reason so many people are upset with Health Care reform, their insurance is working for them, at the moment. The problems that a lot of people don't see and the OP clearly does, due to his existing problems, is that people are fucked if they lose their job. The question these people need to ask themselves is what would they do if they were put in the position where they lose their coverage.

Don't get me wrong, I have no idea on how to reform health care. I just know changes need to be made. My opinions are biased I'm sure, but I think more along the lines that you are solely responsible for your own health. Yeah that might sound hypocritcal to my paragraph above. Requiring everyone to be covered and to pay at least a bit to their insurance is one way, although probably not the optimal way. You are responsible for your diet and other habits. You are also responsible to pay for things that affect your body.

The real problem in the OP's story is the cost of the treatment they need. Supply and demand is the basis of all economics, but when there is a low demand for something that will save somebodies live, people will pay well above what the cost of that product is to make. Hell yes I would pay the money in the OP's case, that company could probably charge me as much as they wanted (until the cost goes beyond my financial means) if it meant me living versus dieing. How do you solve that problem? Simply tell people no if they can't afford it?

What if the cost of that drug was $50,000 a month instead of $5,000, and it is still the only way the guy lives. Who wants to be the one who tells him that there is a treatment that can at least prolong his healthy life for years to come, but fuck you, you can't have it because it costs to much. Next patient please.

[Seraph]

The cost of the drugs isn't usually reflective of the actual current cost of production for said drug. Much of the cost goes to cover the development costs of said drug, the cost of FDA approval, the cost of all the failed drugs they tried to bring to market besides said drug, and the advertising for said drug and potentially other drugs.

What is left over, they usually pump into development of new drugs, sometimes completely unrelated to said drug. You aren't paying for the drug as much as you are paying to maintain the 'machine'.

Edit: Yeah, also, some percentage of the total cost will go to profits and the like as well. Sometimes outlandish, sometimes not.

[Max™]

Why doesn't she taper off the drug? Or has she tried that?

She was on a reduced dose anyways, but there is no real way to be weaned off of abilify, it makes your brain chemistry reliant on the drug, more or less.

If you don't NEED an anti-depressant, don't touch the shit.