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

Actually, the amount that I have paid the insurance company so far is 25% more than what they have been paying for all of my treatments combined.

That is why I chose to say that I am subsidizing them.

Before I replied to your original question I took the time to add up all of the costs that they have covered and the costs that I have paid. It was an eye-opener to say the least. HOWEVER, if something dreadful did happen to me, then the insurance would be the protection I need.

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?

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.

My premiums do total more than what the insurance company pays for my medical treatments based on the expense spreadsheet that they have provided to my attorney.

Also, if I was using public assitance, the State of California told me by telephone that they reserve the right to recover any costs to pay for a catastrophic event by attaching a lein on any existing assets (house, cars, bank accounts, stocks, bonds, etc). That was a shocker to me, and I still have not found any clarification of that statement (and it seems contrary to what was told to my parents). As a matter of fact, that conversation alone is a significant reason for me to keep my insurance.

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?

Cindy, that is correct. Unreal, but correct.

I have shopped around vigorously for a better plan, but without any success (so far).

Wow, that is unreal! 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.