I guess this is going to be considered a rant!!!!
After talking to my GP and rheumatologist, from their opinion, I made the decision to try the Actemra, only to call my Medicare Part D coverage to find it is not a covered drug. The out of pocket cost would be $12,000.00 Sigh!!!!!!!!!! What a merry-go-round, and we are suppose to get rid of stress in our lives---Good grief!!!! All this causes stress!
Ideas? thoughts?
Part of the reason I don't go overboard in saying it is wonderful! Had you said earlier you were Medicare I'd have asked if they'd checked reimbursement!
But as already suggested - Genentech do have a scheme if you are not covered. We in Europe don't qualify...
OMG!
The monthly infusions are said to cost IRO $40K - because of the added clinic costs.
Wow!
Ooops - just realised you probably are thinking that is per month? That is per year.
Ohhhhh. Yes, I was thinking a month. Feeling much better about it. Thank you!
Sorry - so used to thinking in annual costs!
When I was visiting the Actemra FB page, one of the members commented that she had just received her monthly (i assume) doses when she was told that she needed to stop taking it. (I don’t remember the reason.). She contacted Genentech to see if they wanted her to mail it back to them. They instructed her to throw it away. (I’m sure they couldn’t resell it do to possible contamination.). She said it made her sick to think of the thousands of dollars that was going into the garbage. I thought of how many times this probably happens. Boggled my mind.
No, as far as I know the infusions are kept at clinics, it will be the self-administered injections she had at home, and then it depends on the pack she had. The smallest size vial are about $2000 for 4 and the larger ones a similar price for one. So not as horrendous as you might fear. And the cost of production is only a small proportion of the selling price but I doubt Genentech will tell us the details!!
In the UK you can't return any medications to a pharmacy for re-use once you have left the premises. That's why you should always check the stuff is correct at the counter. I gather you can donate whole packs of unused medications in certain states in the USA for use for people with no insurance. They don't accept drugs that require refrigeration and Actemra comes under that - who can be sure the cool-chain was maintained after it was delivered. It is part of the reason that the NHS has started only handing out minimum amounts of medication as it has been established that such large amounts are being wasted. If you already have a pile in the cupboard and have no intention of taking them - why request a repeat prescription in the first place????????
Ohhh...yes, $2000 is much less than what I thought.
I’m going to show my ignorance with this question, but what would make the cost of Actemra so high? Is it that is cost billions (?) in research developing the pharmaceutical, doing clinical trials, etc., and now the company is recouping those expenses so that they can focus on another idea/experiment? If so, do they keep charging those prices until another company offers their version of the drug, or some new treatment is offered? Was Prednisone considered expensive when it was first offered? I know - I’m showing my naivety but I wonder about those patients that could benefit from it, can’t afford it, have no options to it and will it ever be affordable to them. I’m sure the snswer is thst the price will come down, but how long does that take? Oh... and does it cost RA patients that much, too?
It's the same with all new drugs still under patent protection which Actemra still is though, I think, not for that much longer. That is the point at which they try to claw back as much as they can - developing drugs is a very expensive business, dozens of potential medications are ditched even quite late in development when they are discovered in clinical trials not to live up to expectations. So while their drug is the only one they maximise profits. Especially, it has to be said, in the USA where your individual insurance schemes aren't able to put up the same front about price as the NHS or European systems. If it is too expensive - Europe says so and refuses to buy it.
I doubt there is any difference between the price for RA patients and GCA patients except whether it is monthly or weekly/biweekly as the clinic costs come on top of the drug itself. In RA they have had to compete with other new slightly different monoclonal antibody medications and that also makes a difference - they have to position themselves correctly or the insurers/doctors say no too. But they have the rights as long as it is under patent although they may allow other companies to make it before that runs out. After the patent has expired other companies can start to make it as a generic but sometimes there is a difference - same with all generics.
The production of monoclonal antibodies is also quite costly - relatively new technology and doesn't make vast amounts of the stuff at once. It means growing cells - and while these days it is pretty reliable they can still have a mind of their own! Plus Genentech has the patents for a lot of the stuff - so have a great say in how it is used by others. I think too that when they are making the antibody they can get different antibodies being created - so, other drugs that should do the same but are different so can't be sold as the same and must be subjected to trials themselves.
Was prednisone considered expensive at first? Don't know really - it was developed pre-Big Pharma and that makes a big difference! And is a totally different technique, more like making a cake.
You do have to remember though that the USA is almost unique in its health care provision. There may be some restrictions in social medicine but no-one ever has to go without medical care because they can't afford it, whatever age, whatever background. You might not get the all-singing-all-dancing latest Actemra equivalent - but you will get good treatment overall and all you need. Not much point getting a drug that cures you but leaves you unable to live because you have no money to pay the bills and keep body and soul together. In social medicine they start with the basics - but if you don't respond there they keep working through the list. You will get the fancy stuff if you need it - but if the other stuff is good enough, and it is for many, that saves a lot of money.
Thank you so much for taking the time to explain all of this. Big pharma- fascinating and also scary.
When I first joined the forum, I would read about people unhappy with their docs. I thought, “Make an appointment with someone different. Open the phone book (ha aka computer), pick a name, call to see if her/she is taking new patients and make an appointment ..” We certainly have that freedom, But with it comes that ‘you owe’ bill that comes in the mail. Do you ever get you owe bills (if not on private insurance.)
some of us don't have the luxury of opening phone book and getting an appointment with another dr. I live in western NE and drive 4 hours to see my rheumy. just no one else available.
Pwalker801, thank you and sorry. That was so insensitive of me. Living in a city with not just one but two medical schools I forget that there’s a shortage of doctors in our rural communities. Do you travel to Omaha?
I'm sorry, I didn't mean to make you feel bad-- I've been traveling to see a Lincoln rheumy. Your response about Omaha makes me think you are familiar with NE. Do you live in the "GO Big Red" state? There is a rheumy in North Platte an hour away, she has had my file for probably 8 weeks, reviews everything before she will take an appointment, they finally called and I can see her PA on Tuesday so I'm anxious for a 2nd opinion.
Me? No, not now I'm 65 
Before that I had small co-pays for anything that wasn't exempted (most chronic illness is, not PMR though!). We had a charge of 18 euros for a first hospital specialist consultation, 11 euros for follow-up. A small charge for imaging if not associated with an exempt problem. All GP visits are free, 2 euros charge for a prescription - whatever the cost of the drug if it is medically necessary although some things are up to me to pay for. But you also get exemptions on the grounds of income - I had pension income that took me over the limit But all medical-associated bills are tax-deductible - even your electic toothbrush can be put against tax!
I will never get a bill from the healthcare system I can't afford to pay.
I live in the US, and my Part D didn’t cover my Actemra. But I have a Part D supplement - it’s about $250/year. It covered part of the Actemra injections (give them every two weeks) and the pharm company is paying most of the difference. So I only pay $5 a month for the med. When I was getting monthly IV infusions, which I received at an infusion center, Medicare Part B and my BC/BS supplement paid the entire amount. The infusion med wore off after two or three weeks, so the every two weeks self injections work much better.
My rheumatologist and the university pharmacy department “jumped through some hoops” to make it happen, but they got it done. It’s unbelievable the game they have to play to in order for patients to get their meds.
Steroid sparing drugs
Pred the 'controlled drug' 
Chemo drug used for PMR
Leflunomide DMARD drug
