The Annual Cost of My Chronic Illnesses

Lisa, that was an excellent analysis of your health care costs. It is stunning how much you spent out of pocket! Your insurance seems fairly good, overall. However, it is easy to see how close you are to financial peril.

Perhaps I missed it, but did you mention what your monthly insurance premium is?

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Lisa, thank you so much for this post. It's nice to see a "personal" story that we can all (sadly) relate to in one way or another. I like the breakdowns and the descriptions; your list is one example that I am sure is duplicated out there a million times over.

I just got on my own health care reform kick as well, tomorrow I am posting on the exorbinant costs of biologics - and how they may get even worse.

Hi Lisa,

I've just subscribed to your shareposts, and this one was fantastic.  First of all, I was impressed at your highly organized accounting.  Keeping track of how much I spend on what and when is something that I haven't really achieved yet.  I live in colorado and have no health insurance at all, and have not been able to get any disability or medicaid help whatsoever.  (I've tried.)  I am technically a freelance writer and editor, and a few years ago I was making a pretty decent (though never secure, and no benefits) living at that.  Now I am hardly ever able to work at all due to the progress of the RA, both in pain, fatigue, and disability.

Because of this, I am now planning to leave a place I love and move to Vermont, where they have a very good low income health assistance program -- it might make it possible for me to get two joint replacement surgeries that I desperately need in order to walk.

I'm on pain meds and Enbrel now.  The main difference I notice with the enbrel is in terms of energy -- on days when I take the shot (twice a week) I have some energy and can do a few things.  But it doesn't last, and thus far it just isn't doing much at all for pain, which is severe.  My doc is pressuring me hard to get off or drastically reduce the pain meds, and I'm very afraid, because when I go off of them (to give my liver and kidneys a break) my life is simply unlivable.  I just lie in bed and cry.  And I'm not a weak or complaining person.  

I do want to ask -- did you contract the MS because of an anti-TNF drug?  I know that is one of the possible side effects.  And while my doctors are freaking out about the pain meds (that I cannot imagine living without), I am very concerned about the Enbrel, or any other drug in that category.  I get sick all the time now, have gotten dermatitis and some awful kind of nail infection, and nothing like that has ever happened on just pain meds, plaquenil, or occasional cortinsone.

I would be most interested in any of your thoughts -- and thanks for contributing so strongly to this great website.

All best,

Susan Noel

Most days I am thanking God that we have free healthcare hear in th UK. The only annoing thing (sometimes ) is that new drugs have to be approved by NICE (natioanl institute for clinical excellence) before they go on the "white list" to allow prescriptions and some things remain on the "black list" so we can't get thenm unless we pay. The result of this was that we didn't get disease modifying MS treatment until years after you did in the states but when we did it was free.

The only time we have to pay is for such as residential care if we have nore than £16000 in the bank. Prescriptions are always free to under 16s and over 65s or unemployed or those on benefits.

I'm not really qualified to comment on this since I live in Canada where we have universal health care. However I do have an unholy amount of debt accumulated in large part due to having a chronic illness and disability. In the province where I live (Ontario), they have a government program for people who aren't fixed income and once you are approved, they pay for most of you meds. Which considering that my Humira costs somewhere in the neighborhood of $35,000+ a year (plus all the other meds) is something for which I am eternally grateful.

Your post reminds me that I've been thinking about the cost of disability in general. There are some meds that this program doesn't cover and then there's my wheelchair, some of which is covered by the government, but not all. Add to that wheelchair repair, hiring people to go shopping for me occasionally, home visits by the vet because I can't take my cat to the clinic, my dietary requirements which are mandated partly by my illness and partly by the meds I'm on and.... I need to go find myself a frail billionaire to marry!

Thank you, Lisa, for doing all that work to illustrate the desperate need for reform that makes it affordable for the chronically ill to get necessary treatment.  You've done a huge service by doing all of this work.  Thank you.  Jennifer Jaff

Wow, that was a lot of work you did, but thank you for doing so! Chronic illness is exorbitantly expensive, as I've been learning to my dismay for the past couple years. I just got my monthly statement from my health insurance company yesterday and noted that Aetna says they have paid just under $24000 for me on bills they received through June 30. (I think there's some from the first six months that haven't yet been through the insurance wringer yet, so that will probably go up.)

That doesn't include my prescription costs (theirs or mine), my out-of-pocket acupuncture (student rate of $40 per session) that keeps me slightly functioning, or all my co-pays.

I was dismayed to learn that our "new" insurance (started in January) redefines the whole out-of-pocket thing. Our old insurance had an out-of-pocket maximum for all in-network care of $1700. After that, everything was covered at 100 percent except prescriptions (which are spendy enough).The new policy has a $1100 cap, but it only covers what the insurance company deems "co-insurance." That means that even though I've reached that limit, I still continue to pay $25 doctor co-pays for every visit, and the doctor co-pays I paid during the first half the year didn't count toward that $1100 cap. That means it won't lower my expenses by much since the only things I won't have to pay for the rest of the year is the 10 percent of things like blood work and other tests that would have been my share.

I *am* lucky that my prescription coverage doesn't have a top limit. But I do worry a little about the $3 million lifetime limit on the health insurance policy ...

Ok, I'm starting to ramble. My brain is foggy today. But I really appreciate the time you put in to compile this for all of us.

Aviva

http://sickmomma.blogspot.com

To think that I have only one chronic disease and my costs are what they are has always made me feel for you.  The one figure I can remember calculating was my out of pocket medication costs for 2008 and that came to just over $1000.  Out of curiosity, I added up what it would cost me without insurance and I think it was either $32,000 or $36,000.

It just boggles my mind.  Without the insurance I am so blessed to have, treating my MS would leave me penniless. I see my MS specialist twice a year.  My December appointment includes both spinal and brain MRI's.  Without a doubt, I know that before last December, I never had a doctor's appointment that cost just under $10,000.

Having met my annual max. out of pocket by then, insurance should have covered 100%.  My insurer didn't come close to getting that right, leaving me holding the 20% co-insurance.  They now realize they made a mistake but it is seven months later, the medical center sent me to collections and and and.....just thinking about it sends my blood boiling.

Something, if not everything, has GOT to change.

OK, rant over.  

Thank you for SO much, Lisa.

Sheila