Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I am always leery of treatments that are very profitable for clinics and hospitals. And IVIG is a huge profit center for those places that do it, at least in the USA. Does that make a difference in what your doctor prescribs for your treatment? Too often it may.
Most US medical centers are not different than other businesses in that they are in it to make money and that can mean we get the most profitable treatments for them rather than the best for us.
The folks for whom the drug based immune lowering drugs don't work are often stuck with IVIG or PLEX.
So the question you need to think about is your treatment plan based on your doctor's, hospital's and clinic's desire for profit?
I am giving information on IVIG, as it is a huge profit maker in the USA for everyone involved except insurance companies, Medicare and patients. We can get a hint of the level of profit by comparing Canadian at-cost levels versus US profit making levels.
"The mean per-patient cost of IVIG as a treatment for MG crisis/exacerbation was estimated at $6620 in Canada(including hospital costs, costs of blood products, and physician fees) and $90,760 in the US.
Corresponding estimates for PLEX were $4990 and $116,470, respectively.
Although the difference in cost between Canada $6620 and the US $90.760 is not all profit-taking, a great deal of it is-- all the way up the supply chain from IVIG manufacture, middlemen resale, and clinic/hospital/doctor profit.
And that is a great deal of money being made off our treatment and is the reason why I never assume that my treatments are not partially or maybe even totally driven by the profit motive. And so I am always skeptical of being told to continue a high cost (high profit) treatment vs a less costly one. The medical world, at least in the US, has a great share of greed included in its business model.
https://link.springer.com/article/10.1007/s40273-020-00912-8 Costs of MG treatment study - world wide review.
My experience in life is that very seldom are other people purely looking out for our own best interests, and so it is up to us to do it ourselves. My own medical care is through a non-profit where all of the doctors are on salary and treatment cost alternatives are presented to me before we make the decision. And even there, I don't assume that a new machine that needs 10 patients per day to be paid for is not coloring my tests or treatment plan.
Good Luck
Russ
The medical industry is BIG BIZ and they like it the way it is.
Always do your own research and be prepared when you visit a doc.
thanks for finally making this blog open to discutions it is about time that we all talk about the greed of big pharma , middle man, insurance, hospital ect, and the ttal disregard that they show to us patients.
for manny years i have tried to make people aware of this situation, and encoutered lots of rebuke , some of it not to nice, but thats life.
just remeber that mg, is the oldest autoinmune disease in the world, and not much has been done for it, except super expense treatments with no foresight to a solution.
maybe the reason being the greed of the pharmas and consecuentes entities, that put money before all, since as i said before, nobody dies from mg,, they do mostly from respiratory failure due to mg as secondary course
that is what figures in the death certificate.
i am the first to admit that all pharmas ect, have the right to make money, but lets not kidd ourselfs gounging is what they do exploiting the situation that all seek people are going thru.
thru my years of mg, and my relapes, i have seen the manipulations of hospitals , drug companies ect, and the way our desease is manipulate to extract the bigest profit available, with little advensment for any cure for us.
all thru the years we have been the doctors of our own desease, since doctors determinate what couse they will follow, by what we comunicate to them.,
in a way i am very lucky for doctors neuro and endocrinologist which will work with me completely in all aspects of our desease, allowing me to decide mi forward progress
i hope that many other people have the guts to express theyr feeling in htis conversations. as we are realy in need of it
thanks again
best of luck
Andre
Whilst no one can argue that BIG pharma continues to make a lot of money and certainly would seem to do so with iViG. Comparable costs in the UK £2000 / treatment, that’s about $2500.
As you’re all probably aware the UK is working its way out of the EU (BREXIT) and as part of that negotiating with the USA for a free trade-deal. Currently the NHS negotiates far better terms from US Pharma than does the US equivalent. Needless to say, that has been questioned along with many other things, chlorinated chicken being another difference. We do like our animal welfare, that tends to exercise many of us over here as does chemically fattening up beef herds.
The problem would seem to be the US obsession with needing to make everything bigger and in theory at least, gain maximum profit – why breed 250 beef cattle when you can have a factory with 50,000, same with pigs and on it goes. Seems to me that Pharma and insurance companies operate using the same model, with the sole aim of increasing profit.
However, I do see some advantages. If you can afford it, the health Care system in the US is probably better than anywhere else on earth.
BIG Pharma has really pulled out all the stops with COVID-19 and that would not have happened without their previous profit-taking.
Hard to compare where we are with the treatment and ‘solution’ to MG. It’s a complicated disease, but it’s far from being alone either, yet there have been tremendous advances in that knowledge over recent years and no doubt, not in our time, there will be a ‘cure’.
Doubt that will ever be to the advantage of us older patients, much more likely to be a modification of our DNA at a young age. That is, of course, is the way it should be? We all die at some point and there is a certain logic in the thought that it is the immune system that can and should determine when that should be.
I appreciate that Andre has his views, but I don’t share them, albeit we seem to have followed a similar path. I too have great faith in my medical team. they have looked after me really well! All at no extra cost, which I totally concede.
Peter
the best thing you are doing for yourself is to change doctor.
i have been lucky to have chosen 2 females doctors for me a neuro and a endocrinologist.
since we are our own doctors we brinf to teh our experiences pain suffering and result of theyr meds scheduling, the they agree or tell you take the pill
females docs are more interested to leasing to theyr patient and work with them, we as males have the idea that we know all the answer and our words are final, wrong? yes try and you will see the difference.
i know by experience with our daughter and also with my wife, also i can assure you, that with my 2 docs, i am at peace with my inner soul, i trust them and they give me total control of my life, and not specukating if this going to be ok or should i tell this doc, to take aa hike
best of luck
Andre
https://www.usatoday.com/story/news/factcheck/2020/04/24/fact-check-medicare-hospitals-paid-more-covid-19-patients-coronavirus/3000638001/
That being said, I have mentioned they don't like the use of the cheaper drugs, like Hydroxycloroquine because they make more money on other things. When the very real threat of losing your hospital and possibly your livelihood or career in a city, with little options, the options become very scary to the general public. We used to have confidence going to the hospitals and seeing the doctor. They are going to find out that is no longer the case, especially when they try to rollout mandatory vaccinations on the world.
Anyways it is hard to find a good neuro doc especially with MG. Ive been on many visits to be sent back out the door in search of another.
I confess that I don’t understand much of what ‘cgreens’ ever has to say and I don’t mean that to be disparaging. I simply don’t understand and suspect that to find out wouldn’t do me any good anyway. I’m ‘trapped’ with whatever MG and the Doctors throw at me.
Moving on we then have a debate / opinion about the merits of female verses male doctors, quite what the point of that is, equally escapes me. It’s pretty meaningless, albeit what I do get from that is it would seem far easier, is that the right word, to change horses (consultants) in the US system? I suppose that implies an element of the patient is in charge and satisfies some of you?
I did get what philomena50 had to say and that resonated with me and it’s how I generally see things. We have a lot of medical research going on in the UK, especially here in Dundee, Scotland. I’m hopeful for the future, not personally, I’m too old to see the benefits of current research, but that’s no reason to stop it because some of you think it is too costly or just wrong!
i need to apoligize to you, as i read that after 30 yrs. you lost your job in the pharma industries.
maybe i should make my statments more clear to be properly understood. all the emplyers in differents stage of research , i have the most respect for them as i use to say, you are not in the spot. since your functions are discoveries and research of peoducts and meds.
the only ones guilty af abuse of people confidence are the elite of the companies the ones whom make sure that they are entitle to charge whatever they can. and enriche themself and theyr cronies
all the others researchers and emplyees deserve our respects, their is no insult intented for all, but only the ones whom desrve these insults
more know you have my respect as they dint care to lay you off, and to let us know, make us a better people to explain and make the distinction betwen employes and decition makers
thanks for your output
best of luck
Andre
as always you are the master of ignorance and only know how to critisize others
i see that you only know how to trow adjuctives into your phrases, maybe that make you feel good, but really it stinks
spot picking every statment that i explain, and play your disparaging and miningless,or binary ,
it would be great if you take the attitude to diminish our comments and flip flop at every ocasion, consider and aborb all our comments from every body
or stay out ,
since you got your nose so much in the air, like you are above it all ans since england is doing so much as you say, why bother us with your disparities
best of luck
It hardly warrants a reply, but you really do act dumb at times. I doubt a comparison that female doctors are better than male doctors would see the light of day other than on Social Media, or here of course! You're the one with the problems not me, I don't have any need to differentiate people the way you do. Now you imply that all employers are bad and employees good. What's your problem - bad things happen - get a life!