What Would You Do ?????
 

Multiple Sclerosis can be an expensive disorder.

[U]Here is the dilemma: to keep insurance or live off of the public dollar?:rolleyes:


Below is a graph from, people I know, showing the average annual cost for all MS-related medications and treatments:
Blue Line on Graph = 25 of the people with MS who have health insurance.
Red Line on Graph = 12 people with MS who do not have insurance and are below the legal poverty level (on paper).

Note that these are REAL NUMBERS and these data are based on three years of payments by each of the individuals evaluated, including me.

If you get hit by a bus, then your insurance will be a huge help, and it can prevent financial devestation to the family. However, this is not an issue if (on paper) you have nothing in terms of assets.

So, the question is this: Do you keep the insurance because of ethical reasons (i.e. you do not warrant public assistance), or do you dump the insurance and live off of the public dollar even though you can make the payments since it makes obvious financial sense?

This has been an on-going topic of discussioin amongst the 37 of us who have participated in the assessment.

FYI - We have not drawn any conclusions yet.

I thought that it would be a good topic for discussion here.

-Vic

I want to dump the insurance but I have an inner fight going on between the ethics and the financials.

Paying so much each year is just idiotic....isn't it?

Just something to chew on...

Well Victor, I have to say, coming from a home who lived off of the public without warrant at times, I would have to say stick with the insurance. I know what you mean and understand about the paying for insurance, however my parents "played" the system for their selfish gain. I know that you wouldn't be doing that, but for everyone who is legit there is probably 20 times more not legit. (I don't know the # for sure)

Again, this is only my point of view and I am probably biased b/c of the intentional lying on my parents part.

I would like to hear more views as well.

Take care Victor...

Missy

Victor,
My thoughts are dump the insurance and live off the assistance. BUT, I haven't done that myself. I think I may be better off if I did, but it's a hard decision. If I dumped my insurance then we'd have to dump some jobs also to qualify for assistance and because I have two teenagers, I don't want to do that to them. DH and I can live off of little, but I grew up with very little and not much opportunity and want better for them. I want to be able to give them all the opportunity that they would like to pursue. I don't want to give them a free ride when they are not working but I want to be able to help them get a start in life and have it be a little easier than I had it. I worked full time plus while in college and really had some tough times putting myself through college(affording basics like food and clothing). once my kids are not depending on me anymore, we probably will 'retire' then.

Kathy

Vic, clarify for me, are you talking about getting on medicaid and medicare?

Vic - My situation was a little different. As a single mom with sporadic child support it makes it a little different and it makes the answer almost a no brainer.

During my 1st major flare, I was unable to walk, had no balance, spasticity that looked as if I was having a seizure, etc. This went on for a couple of weeks and I would not go to the dr as I did not have health insurance, it was not offered by my employer and could not afford insurance on my own.

To shorten the story, I sucked up my pride and went in to apply for assistance. I completely looked out of place sitting there waiting for my interview, dressed casually but nice, hair done, make up on, etc. It was really tough but I knew it was in the best interest for my DDs and myself.

However, if my situation was different and I could afford to pay for insurance myself, I would opt to do that instead. There are so many others that need the help I would feel terrible and guilty of taking advantage of public assistance.

If I didn't do this, I would be in the red line group - below poverty level on paper as well as my assets and bank account. Even with the SSDI we are below poverty level on paper and in my account.

I now have Medicare and Medicaid and DDs are still on the public health system. Medicaid pays for my Medicare premium.

I have Medicare A + B and my wife has me covered on her health insurance. We use hers as a primary and Medicare back up.

If she lost her job and had to find another, chances are, my MS would be a pre existing condition and not be covered. I would then use Medicare as my sole insurance.

I feel I paid many years into the system and my wife still does. I don't feel bad about using my medicare. If I had to be on medicaid I would also not feel bad.

If you CAN'T work, its a legitimate option, if you CAN work and are too Lazy to work, I don't think you should. my opinion, that's all.

It might be because I just came inside from being outside. (95 degrees..over 100 in the shade...if we had any shade). I just couldnt see the red line. I saw one line, couldnt tell if it was red or blue, going diagonally across the chart. I saw the horizontal lines going across, but couldnt tell if any of them were red or blue. (stupid optic neuritis and uhthoff's phenomenon!)

Where was the red line?

Victor,
This is such a complex issue...those of us with chronic pre-existing conditions are walking a very thin line. At any time, our insurance rug can be pulled out from under our feet with the loss or change in a job, which would require changing insurance.
I believe that if you feel that it is necessary to go on public assistance to get coverage, it is your right to do so.
I live in an affluent community, and used to work as a server in a restaurant before I quit due to my sxs. I would often hear people sit and discuss health insurance. One time a man said, "Why do people think they have the right to insurance coverage?" Boy, did I have to bite my tongue. He didn't realize how lucky he was to have health insurance. There are so many who have lost (or are close to losing) health insurance, and it's only a job loss away from any of us. I'm fortunate to be covered by my DH's insurance. Even though I'm not dxd with MS, I can't even get long term health care.

Our country was based upon principles of "the greatest good for the greatest number of people". It's no longer the case...just look at the disparity between the CEOs and the regular people who scrimp and claw to try to survive.
I think, if you can get it, you should take whatever insurance you can get. It won't be there for the taking forever...not the way this country's going.

Hmmmm .... :cool:

We don't pay very much for health insurance, but then again, I don't think we have cadillac service either. Our doctors are top notch, and we certainly get adequate care . . . but we don't snap our fingers and get what we want, when we want.

From what I've heard of the subsidized medical system there, the service can be not so good at all. Are you willing to take the stress that goes along with that?

Even with low premiums for most Canadians (about $120 per month for a family), people who are unable to make a reasonable ANNUAL INCOME are subsidized or fully covered. It doesn't matter how much money we have in assets (on paper, or not), if our income is insufficient, we may pay less then the standard, or nothing. I am disabled and on LTD, with very little "taxable" (on paper ;)) income, so my family is fully subsidized.

I guess my ethical response would be that I don't think a person should go broke by selling off their assets in order to pay for medical insurance costs every year. However, if they can work and have an annual income to make the payments, they 'should' carry their own insurance.

I don't like the system there though, so I might just want to stick it to them out of spite (and hope that everyone else doesn't catch on to the program). ;) :p

Cherie

I know this has not been easy for you financially. My questions are really about how your level of care and services might change when you are not privately insured.

Would you still be able to be on tysabri? Would you still be seeing the same medical providers? I had heard in the past from family members that there were limits on how many patients a doctor would take from certain systems, and that appointment times were less convenient for folks on alternate systems.

I had to look hard to find that red line, which of course it at the very bottom.
From the chart perspective it seems like the public program is a no brainer, but my concern for you is the quality of care, if you have a choice.

Thanks for the reply, Missy. I am sticking with the insurance even though the question is one that everyone needs to consider.

Kathy, I agree that financially we would be better off by dumping the insurance, but the possibility of leaving my wife with a huge debt if something horrible happens to me (like being hit by a bus and in stuck in a coma for instance) is what is keeping me writing checks monthly.

Cindy, I was not referring to any specific form of assitance, but rather getting public assistance in general even though the personal money is there to cover expenses without the public assistance.

Completely understandable. That is the value of the assistance, and the appropriate use of it. I am glad that it has helped! Getting it on other terms is what is driving this question of ethics which I have posted.

I agree, even though it would save me tens of thousands each year.

The red line is along the bottom of the graph, and is so low that it is hard to see.

I am keeping it. I do not have the ethical right to take public assistance when I can scrape up enough to pay for the insurance. There may be a time when that changes and I am broke, but until then, I will just keep on subsidizing the health insurance industry.

You have asked a very good question, and I think that everyone who reads this should consider your experience in Canada.

You bring up very good points that everyone should also consider. (1) Am I as healthy as I thin I am (my physicians do not think so); (2) I have paid into the system since I was 14 (28 years).

The reason I was asking about medicaid or medicare specifically, Vic, has a lot to do with what Starfish said. In MI, one must be at or below the poverty level to qualify. This means no liquid assets to speak of, no incoming resources, and no expectation of future financial resources.

Many physicians here will not accept the standardized portion paid by the system and therefore send a bill for the remainder directly to the patient. Dental and optical are pretty much out of the question, and progressive MS treatment is a battle.

Ty is flatly refused based on probability, they'd rather gamble that a patient won't need long-term primary care and if it is needed, patients are at the mercy of the state-funded warehousing facilities.

The ethical portion, for me, boils down to need and availability. If you feel that you honestly need the assistance, it is there for that purpose. Once you step away from your insurance, it will likely never again be available to you. Ty would most likely be out of the question (assuming you won't be footing the $20k+ monthly bill yourself).

My DH has medical and health insaurance through his company, yes it would be great to keep the amount we have to pay for the difference between family and individual but we have access to great doctor and care, low co-pays, etc. It does cost X amount a year, but the two years I got a DMD monthly for nothing, good doctors for all of us at $15 a visit, when DD pulled her shoulder out, wemnt to ER, had several follow-ups with a good doctor, well worth it. The power chair I'm getting has more bells and whistles I want than Govt. would give me. I know I'm lucky in my situation, see my cleaning woman, single mom with 2 kids can't afford it, but the quality of care she must accept from system for her and her kidsis not very good in my opinion. Unfair? Dreadfuuly. But since I can do it, will do for us, especially the kids.
When bad things happen or chances at working against the MonStter come up, want to be econically able. Hold on to making it mote possible. Not fair, but private insurance makes me believe that's possible. A friend had what I thought a terrible unethical doctor for his drug addiction who I feel prescribed things unethically, without proper needed supervision, and set him up 100% (in a low sucess rate area) for failure. Private insurance enabled me to concieve which cost big bucks over 15 years (nobody allows it now, considered Elective and unnecessary but was covereded way back then) and I consider myself lucky. If we can afford it, I want private insurance right now.

AMN brings up some good points. With many public health systems your choices are limited as to which dr to go to, what meds are available, what facilities you can get treatment at, etc.

As an example, when I was 1st diagnosed the neuro wanted me to take Provigil. The insurance company would not approve it. We tried 3 times to get it approved and they just wouldn't. So, no Provigil for me (well, except for the samples they gave me). In my case, it was ok as it did nothing for my fatigue.

Additionally, my choice of neuro's is very limited. In fact, only 1 MS specialist is on there. I did go to her for a while, I ended up switching as she was ill herself and her partner left much to be desired (I had dealt with him for years on a professional basis and then as a patient once. He was just as temperamental and hotheaded in his treatment of patients as he was the professional staff). The neuro I now go to is listed as taking care of MS patients. My PCP tried to get me in to another highly recommended neuro (MS specialist) that was not on my insurance but the prior approval got denied as there were others that treated those with MS.

Dental and optical are not covered by public insurance for adults. That is an out of pocket expense for me. However, should I have trouble with ON again, I would get approval to go to a neuro ophthalmologist. As for dental, instead of going twice a year for teeth cleaning, I now go once a year as that is all I can afford.

Even though I am on Medicare now, Medicaid still requires prior authorization even though they are my secondary insurance. It is still a pain.

The great thing about the public health insurance is that my kids get awesome care. They have more choices of drs., prior authorizations go through quickly, they are covered for dental and optical, etc. The system really takes care of kids needs.

It's not $20K a MONTH, is it? :eek:

Your meds, treatments, surgeries, hospital stays, etc. ... probably add up to much more then what you are paying for your insurance premiums, don't they? :confused: Your insurer would likely be more then happy to drop a client like you, to bring the "pool costs" down. More profit for them. :D

I don't feel as guilty being 'on the medical dole' because I don't cost the system very much either. My only med is $20 a month, I've had one MRI in almost 18 yrs, and I visit my neurologist once a year (and do that only because that is mandatory for insurance purposes). Any other medical costs I incur are par with most every other "normal" family in Canada . . . so I'm not costing the system much due to my specific health issues.

These are social safety nets, meant for those in NEED. I'd have much rather paid in for the rest of my life, and have not NEEDED them, but unfortunately that's not the way things worked out. :( I do feel guilty about getting Canada Pension Plan (similar to SSI/SSDI). Yeah, I paid in about $2,000 a yr for 30 yrs . . . but since I am dependant on it until death now, I'm definitely going to be getting every penny back (that me and everyone else in my family ever contributed), plus heaps more.

Cherie

Hi Vic and Everyone,
My thoughts on this are the same as my thoughts on financial aid for college, subsidized veterinary care and any type of program that is set up to help those in need. I have been bashed on the topic of financial aid with regard to people that quit working while in college because their income was too high to get aid. Perhaps my favorite is the couple of single mothers that didn't marry their live-ins until after we graduated because it would cut off their financial aid. I'm sorry but no argument in favor of that sounds fair or honest to me.


As long as I can pay for myself I will. The no brainer reason for me is that I would feel horrible getting assistance when someone truly in need, living off only disability etc. would not get all they could to help them. What I keep coming back to is that these funds are finite. No matter how you look at it, how much I may have paid into these funds etc. there are X amount of dollars to help X number of people.

I am not suggesting that anyone who has no other choice be too proud or feel guilty for accepting public assistance, just that if you can care for yourself please consider doing it.

LOL, it might as well be, the best average I can find says $5,200 which is just as ludicrous to consider as a monthly out-of-pocket expense.

:p Fair enough.

I suppose if it makes a big difference in the much LONGER run, like enables a person to continue to be a reliable, tax-paying & productive member of society . . . it could be a good 'investment'.

As it is, I don't think there is ANY treatment out there yet that would get me back into the land of the living, at least in any financially meaningful way . . . but it certainly would be 'nice' to feel better while at home. ;)

Cherie

I will lose my employer paid health benefits on 12/31/08. It scares me to death to think about what I'm going to do after they're gone. No private company would insure me at a rate that I could afford living on SSDI. And COBRA is over $600 a month - and I can't do that either.

I've worked since I was 16 years old. Only taking a few years off to have my 2 children.

I asked Shared Solutions how much they are billing my insurance company for my Betaseron and I think she told me it was about $1,900 a month. I nearly choked! She told me not to worry - they will provide it for me for free if I am on SSDI. I'm sure there's a qualifying process to go through.

Now that prescription meds are easier to come by with the Prescription Assistance Programs I'm not so much worried about my meds as I am my ability to go to the doctor of my choice - preferably the ones I'm seeing now - and being able to afford the office visits. I'm told you can negotiate with the office staff for an affordable charge although I've never done that before.

I will have no choice but to accept Medicare and Medicaid once (and if) I am approved by SSDI. I don't see anything wrong with that - I paid into the system for years just so I would have the benefit of the services should I need them.

I guess your premiums are either much higher then the "average" blue-liner ($35,000), or you are paying out of pocket/being subsidized in some other way for some of the Tysabri costs then . . .?

I'm curious too though, Vic, you said you hang onto this insurance partially for your wife's sake (don't know the exact wording), so that she may not be left with debt should something happen . . .

If one is on the "public" medical system (whichever one, not with private insurance) would that not cover off all medical expenses in the event of an emergency? What goes down for the people who are disabled and dependant on that system, if something really bad happens? Do they accumulate a debt? :confused:

I am always learning something new about how things work down there.

Cherie

Before I had insurance, and between plans, I always negotiated with physicians for their services. Normally, the smaller private practice physician are the most wiiling, whereas the ones tied to larger institutions are much less willing to even talk about it.

Please don't misunderstand my PERSONAL (as it pertains to ME) perspective on this, because I certainly don't think people in need SHOULD feel at all guilty about being forced into this situation. I don't think there are too many people who would prefer this way of life . . . even though it might look glamorous from the outside. ;)

Nothing comes for free though. These drug companies do not do this out of the goodness of their heart, or at the expense of their bottom line. Every time they hand out these drugs, they jack up the costs to their paying consumers (and insurers) to balance this out. At the end of the day, they are still generating billions, and meeting their profit margins.

That's the way any social safety net works, whether that be provided by our government or a for-profit business.

It doesn't take long for $5,000 a month in expenses to accumulate to the amount we've paid in over a lifetime. Unfortunately, there's not a lot we can do about it in our situation . . . however, these costs are something we need to appreciate, for the greater good of the economy, etc.

Cherie

Vic! Do I understand correctly? You are paying a monthly premium that is 25% greater than the Ty infusions?:eek:

Wow, that is unreal! :eek: I had the option of the insurance through my employer and I pay less for family coverage than the Avonex costs. Are you close to being able to get Medicare Vic? I'd definitely drop the insurance then if I were you.

Since my MS dx we double insure through my DH's employer and mine - my DH's employer is self insured and they gave us all sorts of issues with the Avonex price. Since I took the plan through my employer there hasn't been any issues, I have a $50 copay.

I read your first response to imply that perhaps your insurance company is not paying the total cost of your drugs . . . that you are being subsidized in some other way. I thought that was the case, because I seemed to recall something about Biogen agreeing to subsidize some of the Tysabri a few months ago...?

But you are saying you are paying about $100,000 a year in insurance? :eek:

How can anyone possibly afford that?

Why so much, because you joined up after your dx?

Cherie

For me, the point is moot, since I'm on Retirement SS, now. But I paid for Private Family Health Ins Coverage untill I was 62 and then Single Cov, at around 1,000,00 per month, unill I went on Medicare, at 65.

For the last few years of that, I had no income, except SS (I retired at 62), but I had assets...booooooo....and didn't have enough work credits to apply for SSDI. What can I say...I was between a rock and a hard place.:rolleyes:

I guess what I'm saying is that, there should be some kind of a reprieve for those, like me, who fall through the cracks between poverty and okie dokie..:rolleyes: :D

We're damned if we do and damned if we don't, Vic.....KWIM?

Since I can pay for my own insurance I do not feel that it would be appropriate to get any forms of assistance ...yet!

Biogen has not come through with the "promise" ...yet.

I do not pay $100,000 per year for insurance, but rather about 1/3 of that for my medical care.

It is a tough position to be in,..., no doubt about it.

Medicare is not income based and you've paid for it over the years(I think everyone pays Medicare taxes). Why not take it??

Vic,

If I were in this situation, I think I'd have to go on state insurance. I think IL has a BC/BS plan for those considered "uninsurable" because of certain progressive diseases, including MS.

Right now, our medical expenses are about 15k per year and we can handle that. We haven't had any hospitalizations in awhile... Knock on wood. We're still on my DH's union insurance PPO, but it's very expensive ($850ish) a month OOP plus all the other co-pays we have. I realize we're extremely fortunate to have this, but I wouldn't hesitate to look for assistance if necessary.

If work got to be too much, I'd apply for SSDI. I'm hoping I won't have to think about these options in the near future.

From a national viewpoint, your question is obviously a challenging one. Yes, everyone does deserve medical coverage. But are we really willing as to pay the higher taxes we would have to in order to accomplish this? Probably not!

Illinois has a program called kidcare for those that fall under a certain income level. That is a start. Yet many of their parents have no coverage as they are part of the "working poor." They fall between the cracks of being able to afford insurance and qualifying for medicaid. So they end up going to the ER's.

As an aside, I recently changed my insurance from an HMO to an open access plan where I do not need any referrals. My premiums are increasing from 45.00 a month to 100.00 per month and I have a maximum of 1100 of out of pocket expenses. This does not include prescriptions, but my max co-pay for meds is 40.00. I did not have to pay anything for my tysabri as it was considered a treatment and not a med. I am lucky to have such good coverage. If government employees can get such good medical plans, why can't the government figure out a way to even the playing field for everyone else? Taxes! No politician is willing to say that we need to raise taxes!

Sorry for the rant:rolleyes:

Victor - does your insurance plan not have a copay maximum for the year? Many do...it does seem just outragous that you spend so much.

My out of pocket maximum for the year is $4,000. Sadly, I think I JUST hit that mark. At this point, all of my copays will be 100% covered. Unfortunately, prescription meds do not count toward the copay maximum.... (Tysabri counted b/c it was an office procedure, but Copaxone is not counted - so I needed to get assistance for that b/c I am going back on it in a few weeks).

Medicare, last I heard from someone, does cover Tysabri. Also, I was told that with medicare you can select to have the coverage go thru another company - so I have a friend with medicare who actually has Kaiser. I believe her tysabri payments are ZERO.

I met someone here in Baltimore and Medicare is covering his HiCy/Revimmune, too!

Now, as for insurance - do you know the State of California has a great thing - (yeah, believe it or not - it's actually decent) - It is catastrophic health insurance plan - or something like that - and basically it is this:

If you do not have insurance or can't get insurance (so if you dropped yours b/c you couldn't pay) - AND you have an illness such as MS - you would qualify for TWO years of health insurance, offered by one of many major carriers out here - and the rate would be about 200-300$ a month. After the two years - that company has to continue insuring you, though it would be at higher rate - but wouldn't be over the top (still under 1k, I'm told). As for the insurance companies - it covers the major ones out here - I'm not sure you get a choice of carriers, but you would get choice of plan (HMO vs PPO, etc). The companies basically provide this for the state - and how it was explained to me is that they rotate through the companies - so whoever is up when you apply, that is who you would get. I WAS TOLD IT IS NOT INCOME BASED! IT IS SOLELY BASED UPON THE FACT THAT YOU HAVE BEEN UNINSURABLE.

It is worth looking into this - for the reason that: 2 yrs at a reduced copay - and then that same major insurer has to cover you - but you will have been able to pick what plan works for you (ie: one that has an annual out of pocket maximum).

Don't quote me on the specifics of that CA plan - but call the NMSS and they will tell you about it. Someone spoke to a group of us once about it. It was great to know that was out there for "people like us".


Victor, you pose a great question! I don't qualify for much assistance b/c I own a home and a car. Which is absurd - because basically the BANK owns my car and my home! And even when I had more income coming in - it went to pay for the home and the car....and mortgage interest is tax deductible - so my income after my deductions has been very low - but NO one wants THAT number!

It's very expensive to live, I tell ya!

~Keri