Value of CRABs

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Postby sh8un » Sun Jul 30, 2006 8:19 pm

If you keep your Canadian citizenship will the health coverage cover you in the States?

Bob[/quote]

My first time using the Quote thing... hope it works...

I can have coverage of my meds for a year but I won't be covered if I am hospitalized or anything. So, I guess I would just fly back to Canada if I have a relapse. I still pay for Alberta health care so that's why I don't feel bad about it.
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Postby sh8un » Sun Jul 30, 2006 8:20 pm

OOOPs :oops: I don't know how to use th quote thing. I guess I should have previewed that one.
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Postby Lyon » Sun Jul 30, 2006 8:37 pm

oo
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Postby HarryZ » Mon Jul 31, 2006 6:43 am

Bob,

It doesn't mention the reason for the switch from Sheffield doing it but a thought that comes to mind is that universities which do research sometimes get research funding from drug companies. Not that it denotes anything negative but maybe Sheffield just thought it was wise to bow out.


I believe that the UK NHS provided the funding for Sheffield to conduct this study. Generally, universities don't like to give up this kind of control and subsequent publication because they gain their status in the academic world with this very kind of work.

I have always wondered what it actually costs to produce the crabs. I know that a large part of the cost funds research of future drugs but I honestly can't imagine anything costing anywhere near that to produce unless it's derived from unicorn urine.


Ever notice why we have Betaseron, Avonex and Copaxone all approved and making a lot of money for the companies who make them? They are the same class of drugs for the same disease! And they ALL have that VERY BIG rider on them...it's called Orphan Drug Status! Without going into a lot of detail on how that comes about and how Avonex and Copaxone got this status after Betaseron was the first to get it, Orphan Drug status allows these drugs far greater patent protection and far reduced development costs than normal drugs. (if you want to read the story behind this, it's covered in that book you saw mentioned on the EDMS website -It Didn't Make Cents- the Prokarin Story)

The profit from these drugs is so high and has been for so long, why do you think that these companies fight for every percentage point of the market share. The revenue from these medications is HUGE and the development costs have been paid for long ago. Look at the trials these companies have done in the past few years...head-to-head, open label studies to try and prove that one company's drug is better than the other!!! Why? Market share!!

I can't imagine the MS pharmas leaving town unless the Sheffield study found that the crabs offered no value at any cost I want to believe that my wife is getting at least the 30% effectiveness we've been led to believe but considering the cost, the pain and the side effects no one would want to endure that to no advantage.


I doubt they would "leave town" either but if this study determined that the benefit was about 25% and the disease still progressed, the NHS may have a hard time justifying a cost of about US $ 17,000 a year per patient. If the cost was 1/2 that (and a nice little profit would still be there) one might be able to make a case for keeping the support.

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Postby amelia » Mon Jul 31, 2006 7:48 am

Greed and price gouging are probably the reasons healthcare is at odds in US. For instance, when we got Gary's wheelchair; something to have from time and time and possible future; Medicare had to RENT it for $88.00 per month with us left paying about $15.00 per month for 2 YEARS, manditory. Then to own the chair, we had to pay $88.00 for 3 months after the 2 year rents. This is a manuel chair with pnenumatic wheels. Nothing fancy, but better than average cheap chair. Do the math and you will see how expensive it really was. If the CRAB's could set up foundations to give the medicine free, or reduced rates, then why does the insurance companies and individuals have to pay the high rate? Somebody PAID for that medicine, whether it was the federal gov't or the drug companies themselves as a write off on taxes. I know for a fact that a drug rep will visit a DR's office and bring Red Lobster meals for everyone in a medium sized office. For those of you out of US, this is a nice seafood food chain in US. The drug company paid that bill. In turn, we as consumers PAID THAT BILL!
Yeah, greed and price gouging is definitely a problem that will have to be addressed soon.
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Postby Lyon » Mon Jul 31, 2006 2:03 pm

oo
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Postby LisaBee » Mon Jul 31, 2006 4:04 pm

I know I'm jmping in late on the posting, but the system for privatized medical care in the U.S. really is breaking down across the board. Most people in the U.S. actually get their medical insurance through their employer. More and more employers are no longer offering medical insurance. It is particularly difficult for small employers, because it cost them more, per employee, than for a large employer. Even if they can offer it, the copay that the employee must come up with is not affordable. Most expensive of all is for someone to get an individual policy, and at that, the only way to afford the policy is to have a high deductible. Even large employers are starting to back out of medical care promises to their retirees. More and more people that retired from large companies on pensions but have still not reached the age to be eligible for Medicare, are finding their benefits cut, and they are at an age where getting an individual policy cost a premium, even if they are healthy.

For people with MS, it is probably impossible to get coverage if tyring to self-insure unless they are in a state that requires insurers (either private or state-sponsored) to offer insurance to everyone - Vermont and Massachusetts come to mind. In Massachusetts it is a new arrangement, so I don't know what the cost will be. In Vermont it is high. I don't think getting on group health insurance is as much a problem if working in the public sector because it is such a large pool (I'm guessing about this), but for a private employer there may be a delay before becoming eligible for insurance or being subjected to pre-existing clauses that prevent getting covered treatment for a pre-existing condition for up to a year. Formerly, employees with pre-existing medical conditions could be denied medical coverage or forced to pay a much higher premium than the other employees as a condition of their employment. This happened to someone I knew that had rheumatoid arthritis. However, that was back in 1993 or 1994, and I don't know if it is legal for a company in the U.S. to do that anymore.

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Postby LisaBee » Mon Jul 31, 2006 4:55 pm

Now that I finished my vent on the U.S. medical system,

Am I not mistaken, but isn't Parexel, the company that is taking over the CRAB review, the very company that tested TGN1412 on behalf of the German company TeGenero? Is this not that trial that went horribly awry and resulted in several healthy volunteers being subjected to multi-organ system failure and near death? I think they all survived, but the last to recover is still in a wheelchair and may lose all of his toes and parts of three fingers, according to a recent BBC article from the end of June.

Maybe I'm being unfair, but I'm not very confident in Parexel right now...I'm surprised, given the recent TGN1412 situation, that Parexel got the honor to take over from Sheffield University.
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Postby Lyon » Mon Jul 31, 2006 5:09 pm

oo
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Postby amelia » Tue Aug 01, 2006 7:44 am

There is a slight solution to the healthcare system without going completely gov't issued. First of all, you don't go to the emergency room for a cold because you didn't want to miss work that day and it cost nothing to go to the emergency room and it does at the DR's office. If you go to the DR all the time, you should pay to go to the DR all the time. Personally, I believe many healthy people go TOO much to the DR, at the DR's advice many times. "Come back and see me in 2 weeks and we'll see if that nasty cold cleared up" There should be a system that would reward you with a reduction in deduction or something if you don't go to the DR often. And it is time to stop denying insurance or making it impossible for the ill. MS in its earlier stages, for the most part, on average, does not require you to be in a DR's office every week. Or the emergecy room every other week. Yes, I know there are exceptions. My husband being one of those. We have all as a society got to take responsibility for our healthcare, TO A CERTAIN DEGREE. There must be some kind of CAP on insurance premiums so individuals can afford it. Why should I pay over $300.00 per month for moderate insurance coverage and not use it for a year or two.
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Postby Lyon » Tue Aug 01, 2006 2:00 pm

oo
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Postby Lyon » Tue Aug 01, 2006 2:06 pm

oo
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Postby Lyon » Tue Aug 01, 2006 2:06 pm

oo
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Postby LisaBee » Tue Aug 01, 2006 5:12 pm

Well, to close a loop on this thread, one of the aspects of having MS that makes one such an undesirable candidate for health insurance, from the insurers standpoint, is the cost of CRABs. Like Amelia says, people in the early stages of MS don't necessarily have a bunch of doctor visits or hospitalization, although some do. That is one of my big concerns about this neurological push to diagnose MS early, and get MS patients on CRABs early as possible, and keep them on them "for life". I've seen articles where the medical consensus is to get people with clinically isolated events on MS drugs for years, "just in case". Having a "clinically isolated event" with no actual MS diagnosis, would still be enough to send insurance underwriters running for cover once they see the cost of five years of Avonex; and in the U.S. insurance market that would lead to being blackballed for life.

No one (in publications anyway) seems to be discussing the impact of the earlier and earlier diagnosis on obtaining employment, obtaining medical insurance, obtaining life insurance, etc. From that standpoint, for early MSers with mild symptoms, the potential impact of the diagnosis is far greater than the disease or any advantage of getting earlier tratment. Thinking back, I've probably had symptoms, mild ones, for at least 20 years. In a lot of ways I'm GLAD I didn't get diagnosed sooner - an earlier diagnosis would have gained me nothing and cost me greatly in terms of being able to go to grad school (with affordable health insurance as a "healthy" student), to have good job mobility, to obtain medical insurance, etc and make COBRA insurance payments when I wasn't working, take a year off and travel, etc. If the whole impetus behind early diagnosis is to get people on CRABs as early as possible to slow disability progression, yet in the long run CRABs aren't shown to meaningfully slow disability progression, it begs the question of the whole paradigm. I haven't even touched the issue of the cost of the CRABs themselves in relation to efficacy, which was purpose of the Sheffield study and the start of this thread. I don't know how it is in countries like GB that have nationalized health care, where access to health care is not tied to employment, like it is in the U.S. In the U.S., people lose their job, they lose their health benefits. If they have a pre-existing medical condition, establishing health benefits again becomes very hard. I suspect that twenty years ago, before CRABs, doctors were a lot slower to diagnose MS in people with mild symptoms because of the fallout in their lives that were worse than their potential disease course, at least for a while. Without MRIs, it was also a harder diagnosis to make. Now we've got MRIs for diagnosis and CRABs for treatment, but CRABs don't work very well for a lot of people and/or some people can't take them. In some ways that hasn't made the situation better on the early end of the diagnosis, in spite of what all that pharma marketing says that people are better off now with an MS diagnosis than they used to be.

Sorry for the dark post, but this impact of diagnosis, and how the CRAB availability drives diagnosis, is something that I think should actually be studied, particularly in the U.S. I'm not advocating that people shouldn't get a diagnosis. It's just that the diagnosis has huge economic implications for the individual receiving it, particularly in the American medical health care system, and all the neuros and pharmas marketing early diagnosis and early treatment don't necessarily consider that. The fault is with the medical system itself.
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Postby LisaBee » Tue Aug 01, 2006 6:19 pm

In regards to amelia's and Lyon's posts, I agree that some people do use the medical system irresponsibly, with unnecessary visits, especially ER visits. Some of that, though, is not people's fault - it's the system. I've had experience with having insurance through a past employer that no private physician office would accept, and my designated primary care provider did not have an open office appointment for a month. The insurance company instructed me to go to the ER, for an acute but non-life threatening illness, just the type of patient an ER hates to have to deal with. I wound up getting treatment at an occupational medical clinic, which the insurance company then refused to pay because I didn't go through my primary doctor (who couldn't see me). Yet they would have paid if I went to the far more expensive ER and sucked time and attention away from someone with a real emergency. So I paid out of pocket for the occupational clinic. Catch-22, neh? Sometimes those cheap group plans aren't worth a dime. There's one insurer strategy to keep costs down - make it extremely hard to access medical care. I don't know what my employer was paying, but my portion was about $50-$100 a month for what was largely unusable coverage.

I am curious about the U of Michigan system. The concern I had from the description was if an individual employee got diagnosed with a serious (and costly) illness, would that screw up the raises for the rest of the employees? Would that make someone afraid to go to the doctor? If several employees or their dependents had the bad luck to have bad illnesses, then the insurer would review the group and probably raise the group rate and everyone would be out of luck for a raise? What would constitute excessive for an individual? Someone actually could be seriously sick. The potentially bad thing about awarding people for not going to the doctor, is well, they might have diabetes or something and it would be much better if they went.

One thing my current health plan does, which is nice, is give access to talk to a nurse before scheduling a visit, in fact, this is necessary. That way the nurse can query symptoms and give guidance on whether or when, a visit is really needed. I personally use what I call the 10-day rule - if some illness or symptom doesn't go away in 10 days I call in. Because I do that, I am usually able to get in quickly once I call. That works for nonserious viral stuff, obviously crushing chest pain wouldn't wait. That cuts down on going to the doctor for simple colds and saves on costs. Preventative care and wellness programs also save on costs.
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