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