Multiple Sclerosis can be an expensive disorder.

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


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

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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?

Vic --

I know that some people just play the system, and, may have done so for all of their adult lives. But, many of us with MS have spent many years employed, and paying taxes.

If it seems to make financial sense to you to dump the insurance, it might not be as complicated an ethical dilemma as you originally perceive it to be. Your taxes have helped to pay for others who needed affordable medical care. Maybe, it's just your turn to receive.

I read, with interest, what Debbie wrote regarding how the rug can be pulled out from under us. That can be true with insurance, or with employment.

I know that I wonder that about applying for SSDI, too. I wonder whether I really could look for another job, and whether I could continue working.

But, when I read what my doctors write about me to SSDI, I think that maybe I am more disabled than I am admitting, even to myself. Even if I could obtain another job for a little while, I expect that I would lose it, like I've lost 3 others within 6 yrs, because of of flares and absences. Perhaps your situation is similar to mine; it might just give more stability to be accpeting money from the government than counting on something that we might lose.

I guess that I don't really have an answer for you. But, you did not choose MS for yourself, and you would be glad to pay for insurance if you didn't have other issues that complicate this whole thing.

~ Faith

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.