Cost effectiveness of DMD's

[glenmoor_guard]

Hi all.

In the news today have been summary of a report that attempts to weigh the cost of DMDs for MS against the gains by patients as measured by a quality of time of life in perfect health gained. For a disease that uses terms like "is thought to be caused by" and "is most likely an immune over-response" I don't think an adequate measure of gains exists.

Years of perfect health are not in my list of goals for the DMD I am taking. The retention of the ability to use a fork to feed myself is on the list. How valuable is having the chance to take a DMD that might prolong my ability to feed myself? Incalculable!

As my ability to hold onto some parts of my daily living skills that "normals" (muggles to MSers) take for granted (holding onto my keys at a locked door, shopping at a Super Stop&Shop without falling down from fatigue, working a full day and then cooking a decent meal) slip away, I will take the chance, however small, that the DMD is slowing the progrssion of the MS.

I dare any bean-counter to say different if they had to face that choice.

The death-boards that were fictionalized by the health care reform opposition have a basis in best-practice boards. These committees would exist to pick a number based on research like this to determine whether or not I (or a loved one) gets a treatment based on the budget allotment.

I hope healthcare does not end up like this. Glenn.

[celloyogi]

Ditto.

Bean counters shouldn't be dictating what is or is not appropriate treatment for any medical condition, let alone serious life-long illnesses like MS.

[0485c10]

I'm glad you posted this, i saw the many articles myself & wanted to discuss this with MS people. I suppose i will supply a few links to some of the articles so others can see what we are talking about.

the articles state that the study show QOL improvement cost for MS meds is much more than the cost of maintaing QOL for other chronic disease. I remember a few years ago when the UK went through the same controversy in their national health care system. the gov refused to pay over a certain dollar amount for the amount of QOL improvement that the meds gave...so the drug companies sell the meds at half the cost in UK that they do in the US.

this study may drive cost of MS meds down in the same way? although new meds may drive the cost of old meds down any way?

in the webmd article it says that over 10 years the cost of the med is $267, 710.

and in the UK betaseron costs about $12,000 per year
and in the US its $34,000 per year.

we ms people are really cash cows to the pharmescetical industry!

that AAN report says that
those taking Avonnex gained 2 quality adjusted months over 10 years compared those that didn't.
those taking betaseron had 6 out out 10 years relapse free compared to those not taking meds that had 5 out of 10 years without a relapse.

it also points out the issue we struggle with....for some it helps much more and some much less & we don't know which one we will be within in these averages

but it does cost a lot for not that much of a return. its tough to remember these meds have not bee around for that long--starting in 1993. they are getting their report card now..and it doesn't look like an "A", so no free videos from family video for each A.

here are some of the articles. much interested in what other ms'ers have to say about the study.One study generates many articles.

http://www.newswise.com/articles/view/578579/?sc=rsmn

http://www.webmd.com/multiple-sclero...ss-of-ms-drugs

http://www.reuters.com/article/2011/...ame=healthNews

http://www.bloomberg.com/news/2011-0...tudy-says.html

http://www.sciencedaily.com/releases...0720162039.htm

[golfwidow]

Beginning in May of this year we lost our group insurance and being uninsurable because of MS I am now on our State High Risk Insurance. It is not free, I pay a hefty premium, and I must pay for my Betaseron and then be reimbursed by the insurance. My Beta is 2929.00 per month to fill.( SHOCKER !!!) I paid for May and was reimbursed partial because I have a deductible, June, there is a problem and have not seen any reimbursment, I have my July meds, have submitted them as well, however unless I see reimbursement money I will have to stop getting the medicine.
Scary thought as I have been doing well on them, but 3000. a month is not in the picture, the money tree in the back yard has not been producing. I have two friends who pay 49.00 per month for their Betaseron. Both have group insurance. On our previous group insurance I paid 200 a month for the meds.
There is such a discrepancy in health plans, and payments.
Would love to see the "pre-existing condition" end. Private insuranced is a mess, and group is not much better.
I am grateful I can get the state insurance, but it is expensive and if it won't help with my Betaseron I will have to stop taking it. too bad cause I really do think it is keeping things at bay.

[skreynolds57]

I suppose its worth doing a similar analysis of the cost/price of DMDs. Are the drug companies making a reasonable profit? Are the drug companies, in concert with insurance companies (and perhaps even some doctors and patient groups who they support finacially) gaming the system to the detriment of the people paying the bills? Not so easy to get a true picture. I'm no conspiracy person but this scenario, quite frankly, stinks.

[Bob698]

I went thru this back in Maine.
I had the symptoms but couldn't get an MRI for the DX. I had Drs tell me that steriods wouldn't help the ON in my left eye and that if it was MS, there was nothing they could do to help me.
This was the same crew who originally told me it was either a brain tumor or MS, have a nice day! Nothing about treatment or diagnosis since I lost my insurance a couple of years before that.
On the flip side, it wasn't like anyone was selling space on passing icebergs* so you're just kind of left to wander around and hopefully find some kind of job that has medical bennies. Of course, this is also small town New England where everyone knows about everyone else and good freaking luck convincing anyone that you won't bankrupt their company if they hire you.


* - The old story about Eskimos jumping onto a passing iceberg once they felt they were too much of a burden.

[0485c10]

there has been another thread started on this subject...hust putting a link to it in this thread to keep the subjects together...did the same in the other thread with a link to this thread.

http://www.msworld.org/forum/showthread.php?t=113080

[kelm10]

golfwidow

Insist on assistance from the drug companies. Keep documentation that they are not reimbursing you.

[cosake]

Golfwidow - Betaseron has one of the best financial assistance programs. They even have a $0 co-pay program for those who qualify.

I was able to get it for $ 50 / month because I didn't qualify for for the $0 program.

Check it out - you may be surprised !

[golfwidow]

Thanks, I was getting a little assistance ( not very much), but was told the insurance would not reimburse if I got assistance.......so i am waiting to see what happens next.

[SwedishPrince]

So easy to be lured by the prospect of a benevolent Uncle Sam taking care of our health insurance woes.... and then you start to realize good old Uncle Sam might not be so generous and helpful after all.