Why are anti-rejection meds so expensive?

[Meinuk]

High up on the list of things that run through my mind when I am trying to fall asleep is "why?" (that is when I am not composing e-mails to the NKF in my head)

Yeah, yeah, yeah, we all know the standard answer, R&D and all of the money that is poured into launching these "Miracle Drugs".  But for some nagging reason, I wonder...  is it like EPO? Where the government is a guaranteed payor at least for the first three years?  (now that is a safe investment eh?)

What are the cost comparisons for other countries?  Now that Prograf and Cellcept are available in generic form, I can almost pay for them out of pocket  - but why when a month of CellCept generic is just a bit less than a month of COBRA?

I am already paying $444.00 a month for COBRA, when my Medicare kicks in next month, it'll be cheaper for me, but I still wonder... how much money are drug companies paying their professional lobbyists? 

It is already clear that it is big pharma money that paid for my grass roots PKD lobbying trip - it is only grass roots when the lobbyists is uncompensated - but don't be fooled, it is Big Pharma who is donating to these groups - hey, it is a win/win situation, patient faces on the government lobby AND a tax write-off - makes good business sense. But they all contract professionals to push their agendas on the Hill as well. Sadly, that is how a lot of legislation is actually written - not by the sponsor who puts it forth, but by professionals, who write the bill and then the staffers vet the bill, and send it to be entered into the legislative system by the sponsoring politician. It is a very expensive process.  When writing legislation - no one really works for free.

Per my MEDCO history:

Prograf 1mg                    $520.27 (#150)
Generic Tacrolimus 1mg    $468.32  (#150)

Prograf 5mg                    $1,040.62 (#60)
Generic Tacrolimus 5mg    $   936.57 (#60)

CellCept 500 MG                                        $740.56 (#60)
Generic Mycophenolate Mofetil Tabs 500mg  $428.46 (#60)


Well, on the one hand, I am very happy that I have insurance.  On the other hand, is this medicine as expensive in other countries?  Are the makers seeing profit from these drugs that are keeping my graft healthy?

Granted, in the long run, it is still cheaper than dialysis, but then again, DaVita made a good profit from my private insurance while I was their patient.

Did our American medical economy create this? When we fight for coverage via Medicare are we enabling this? I the system being abused? or is it just a very expensive niche market?

Like I said, these are just thoughts I ponder when I can't sleep at night, and tonight is one of those nights.  Maybe now, I'll go back to bed and draft an e-mail to the NKF....  But in the morning, I'll still be wondering:

How much do these meds cost in other countries?

Are they cheaper? 

If they are, "Why?"

[cariad]

They do appear to be cheaper in Canada, if by 'cheaper' we mean cash price for the patient. My prescriptions are solely through insurance and are $$$$$ for them. I get my prescriptions shipped from my transplant hospital, and when I set up the first order, the pharmacist said 'We have a prescription card for you - it covers all co-pays for Prograf and Myfortic (CellCept)". I think Medicare is involved in this somehow, and it did not matter that I had private insurance and no part D. It probably saves me $50-$80/month, but I am still confused about what this is, and does everyone in the US get this benefit?

I am interested in the why query as well.

[monrein]

http://en.wikipedia.org/wiki/Comparison_of_the_health_care_systems_in_Canada_and_the_United_States

This is a bit outdated but speaks to the issue of drug costs in one section.

[totosidney]

Amgen, the maker of Aranesp (EPO), probably the most important drug we take, and fabulously better than the constant blood transfusions that were needed before the erythropoiesis-stimulating agent was invented, has been quite profitable. One might say fabulously profitable as it was the basis for the creation of a giant corporation with 17,000 employees and $14.6 Billion in sales and $4.6 Billion in Profits in 2009. It is certainly a matter of opinion, but I for one, am happy that they exist, and am happy that they continue making a profit and seeking to invent new fabulously expensive drugs.

Without the incentive to become fabulously wealthy it is highly unlikely that the drug would exist. Someday EPO will be very cheap. Patients won't bitch about Angen then, eh?

[Meinuk]

Cariad, thanks for the support - sometimes I wonder if I am the only one out there who says "huh?"

Monrein, thanks for the link.  Here is the pertinent quote:

There are several reasons for the disparity. The Canadian system takes advantage of centralized buying by the provincial governments that have more market heft and buy in bulk, lowering prices. By contrast, the U.S. has explicit laws that prohibit Medicare or Medicaid  from negotiating drug prices. In addition, price negotiations by Canadian health insurers are based on evaluations of the clinical effectiveness of prescription drugs,[89]  allowing the relative prices of therapeutically-similar drugs to be considered in context. The Canadian Patented Medicine Prices Review Board also has the authority to set a fair and reasonable price on patented products, either comparing it to similar drugs already on the market, or by taking the average price in seven developed nations.[90][91]  Prices are also lowered through more limited patent protection in Canada. In the U.S., a drug patent may be extended five years to make up for time lost in development.[92]  Some generic drugs are thus available on Canadian shelves sooner.[93]

The pharmaceutical industry is important in both countries, though both are net importers of drugs. Both countries spend about the same amount of their GDP on pharmaceutical research, about 0.1% annually[94]

My take on the above:  Your tax dollars are paying retail.... now that is just bad business....

And TotoSidney, welcome to the forum.  It is always great to read a new voice.  I believe that there is a line between profit and profiteering. With regard to EPO, the abuses are documented.  The LDO's over prescribed EPO, because they could buy the drug at a negotiated price, and be reimbursed at a premium rate. This is not really a good parallel for immunosuppresives though, especially Prograf/Tacrolimus as it is nephro toxic, and we need to be on the lowest therapeutic dose possible. My suspicion is price fixing, and since CMS will not negotiate drug prices, it is a guaranteed profit.

How is the retail price point set for these drugs? How much of a profit is seen from the net income? The gross income?

What about the cost of graft failure when people stop taking their meds because they can't afford them anymore? (those stats are staggering!), and the physical cost that takes its toll when an otherwise eligible person does not list for a transplant for economic reasons?

What gives me pause is that we will rise to the occasion when asked and beg congress to pay for our drugs.  But we don't ask "why do they cost so much?".  And are we really doing the best for ourselves and society by just accepting it blindly?

I get your admiration for the vast pharma profits that entice people.  I'm just glad that Alexander Fleming, Linus Pauling, Jonas Salk and Belding Scribner were not bedazzled by glittering piles of money.

And as far as being a bitch (extrapolated from "bitching"):  Bitch is my baseline. I will wear that label proudly as long as just one person can gain something from my writing and questioning.  It was Epoman who started me down this path.  He created IHD as a place for everyone, uncensored, a place to ask questions, bitch and commiserate. IHD changed my life, and I decided to buy into it wholeheartedly.  I'll share my 1am thoughts, my whinges, my rants and anything else that catches my fancy, because we are who we are, warts and all, and we are all in this lifeboat together.

[Meinuk]

Ok, curiosity brought me to Drugstore.com.  Now I am really wondering....

Generic Cellcept (Mycophenolate Mofetil) 500mg #100 is $129.99

HUH?  What a GREAT deal.  Why the disparity?  Medco, a huge volume buyer is charging my insurance $428.46 for 60 tablets.

I'll call drugstore.com in the morning and ask how they got such a deal.

[Chris]

Curious to what it now cost for my CellCept and Prograf. I never look at the sheet anymore since I do not have to pay it. I know it use to be in the $1000's when I first had my transplant and was on higher doses. I also wonder if there is a price difference when I am given the 500 mg tablets over the 250 mg (2 per dose) of CellCept. Hopefully didn't shred that report yet from insurance.
 
Cariad, did you get anything from Medicare? the immunos are always Part B coverage while b/p, and most others are Part D regarding post transplant care. One way to find out is when you call to get a refill and ask the pharmacy. For the Medicare prescription coverage program (Part D), when I order my prescriptions, I have to call their Part B department to order my immunos    Which to me is odd, should be able to talk to one person to order all meds at once, shipped from the same place

[Meinuk]

I spoke to a pharmacist at Drugstore.com, and was e-mailed an official reply:

Dear Anna,

Thank you for contacting drugstore.com regarding the pricing of medication.

The $129.99 is within a small percentage of the price we pay for the medication [wholesale]. Since we are a mail order pharmacy, we do not have the overhead costs that may be added on to the price at other pharmacies.

Ok, so their wholesale price seems reasonable for a new(ish) to the market drug.  Why the difference between retail and insurance payment via Medco (also an on-line entity)?

Maybe it isn't the drug companies - maybe it is the pharmacies....

hmmmm. 

Costco Pricing:

 MYCOPHENOLATE 500 MG TABLET (ROX)    $137.97  (#100)

 TACROLIMUS ANHYDROUS 1 MG CAP (SAN)  $312.68  (#100)

I guess my question is, has anyone used Medicare Part B at Costco?  I am not using it yet, so I have no experience.  My Insurance forces me to use the more expensive Medco - I don't have a co-pay, so that isn't an issue, I just wonder about the disparity in pricing.

[Chris]

How else can the board get their bonuses, stock options, high end vacations, cars, homes, and so on and so on 

[Meinuk]

I actually have a meeting with an Astellas rep on a totally different issue.  I'm gonna ask what their wholesale price is. I am quick to blame Big Pharma (oh, they are NOT innocent - but maybe not as guilty), but it looks like MEDCO (Trivia: founded by the Kennedy Family) is not so blameless either.....

[cariad]

Amgen, the maker of Aranesp (EPO), probably the most important drug we take, and fabulously better than the constant blood transfusions that were needed before the erythropoiesis-stimulating agent was invented, has been quite profitable. One might say fabulously profitable as it was the basis for the creation of a giant corporation with 17,000 employees and $14.6 Billion in sales and $4.6 Billion in Profits in 2009. It is certainly a matter of opinion, but I for one, am happy that they exist, and am happy that they continue making a profit and seeking to invent new fabulously expensive drugs.

Without the incentive to become fabulously wealthy it is highly unlikely that the drug would exist. Someday EPO will be very cheap. Patients won't bitch about Angen then, eh?

totosidney, I agree completely with Meinuk - prove to me that the only way to get people to create new drugs is the chance to become "fabulously wealthy". This is what big pharma apologists state as if it were an established fact. If that were the only way to get people to try to improve the lives of others, we would have no teachers, no firefighters, no policemen, no EMTs, no conservationists, no social workers. What is so bleeding special about drug research that we cannot convince anyone to get involved with this exciting field without bribing them? I have met one of these drug researchers, a Dr. Vincenti of UCSF whose belatacept should be on the market soon, if it is not already. He is perhaps one of the most compassionate individuals I have ever met, and I highly doubt that he is motivated by money. And as for 'bitching' - while I find that term demeaning to people who are on a support board and may be suffering, prednisone is practically free and people have many legitimate complaints about it. Amgen has been caught in criminal activity just to try to squeeze ever more profit from this drug - I would not cross the street to spit on them if there were on fire. (Just as an aside, this is the transplant section, so Aranesp is actually of little consequence to those of us with a working transplant. It is the immunosuppressants that will save the big money over time as theoretically, they will prolong the life of the transplant.)

Chris, ah, I get it now. Thanks, I've learnt something new. I have part B, so that's why the immunosuppressants are free. Thank you once again, socialized medicine! The co-pay coverage practically pays for my monthly premium. Although, I'm disappointed that Blue Shield won't be stuck with that bill. Oh, well - Valcyte costs a pretty penny. That is madness about having to phone different departments within Medicare. I don't talk to Medicare at all - isn't that meant to be the pharmacy's job or something?

[Rerun]

The real answer to "why are rejection drugs so expensive" is because they have our lives in their hands.  Drug Companies have us over a barrel.  Our food in the US will someday be like this once we run all the family farms out of business and only corporations milk cows and grow food.  You get your transplant just so you can go back to work, 70 hours a week, to pay for your drugs to keep you off dialysis which keeps you alive.  It sickens me to think about it. 

Greed!  That's all it is.  Remember when they found a cure for Polio and the little drink was free.  The R&D was then awarded.  Now they get grants and money to keep "trying".  Why would they find a cure for kidney failure when the money is in trying!

Meinuk, don't worry about this too much because I can tell you from experience there is nothing you can do about it.     

[totosidney]

It was said above>> prove to me that the only way to get people to create new drugs is the chance to become "fabulously wealthy". This is what big pharma apologists state as if it were an established fact.

My response: I did not say that it was the only way. There is no need for it to be the only way, as you prove. It is only one way. And we do now have EPO which was very expensive and difficult to develop. So I think it certainly is one way. Private Research is not evil. The profit motive is not evil.  Fabulous profits are not evil. Evil exists is very poor people, in very ordinary people, and in very rich people.

It was said above>>"And as for 'bitching' - while I find that term demeaning to people who are on a support board and may be suffering"

My response: Bitching about things on dialyisis was not meant to be demeaning, and isn't demeaning. Isn't that name of the forum "I Hate Dialysis" an expression that is bitching? I think your bitch about the word bitch is a dubious complaint.   best wishes..Sid

[Meinuk]

Ok Toto, correct me if I am wrong, but my understanding is that you are OK with the EPO for profit abuse that has been going in in the dialysis community, because the ends justify the means?  Do you really  think that because we now have EPO, it is ok for the LDOs to overdose patients and reap profits? (read the congressional testimony)

My thoughts are that creating a miracle drug is not a license to abuse patients and the system (Amgen is not alone in this BTW). For a bit of background, I was working in dialysis/transplant when we we had EPO in human trials in the `80's.  It works miracles - no doubt.  We had patients who were flying it in from Japan at their own cost.  But just because it works is no excuse for what the LDOs were doing. Overdosing EPO wipes out the iron stores, and is no help to a patient - it causes needless suffering in the minor, and death in the major.

As for the "pissing contest" (hahahaha a pissing contest on a dialysis support board....) Let's just stop right now, take a deep breath and remember that these are people at the other end of the keyboard.  My advice is do not type anything that you wouldn't say to someone's face.

My intent in starting this thread was to:

A) point out that these drugs are remarkable expensive and in some case prohibitively so.
B) comment that Big Pharma uses patients to lobby for government payment
C) ask "why aren't we questioning that?"
D) and ask is pricing the same world wide?

Rerun, I thank you for your practical advice.  It is true, we aren't even cogs in the wheel, but I'm not losing sleep over this.  The fact is, sometimes I lose sleep over different issues, and it is easier to ponder this than address the real reason I am losing sleep, and I like to share!   

[cariad]

Sid, you stated that it was "highly unlikely" that we would have EPO without the promise of extreme wealth. I say that is a preposterous statement. I don't really want to get into hair-splitting semantics games with you, but now you are backtracking and saying it is "only one way" which is a far cry from your hyperbolic "highly unlikely".

Perhaps I did not make myself clear when discussing your use of the word 'bitching'. I will take your word for it that you did not intend to be demeaning. There are actually ways to express that same sentiment without the the use of a sexist epithet, now lobbed at my behaviour, which I do find offensive in the extreme. One of the reasons why I chose to join IHD was Epoman's rule that swearing be used sparingly or not at all, and that members need to show each other respect at all times. Now that you know that I find that word offensive, I'll trust you'll show me the very basic courtesy of not applying it to my actions. Comparing the use of that phrasing to 'I hate dialysis' is ludicrous. Dialysis is a machine and process, not a person, and there is no vulgarity in that sentence. I did hate dialysis when I was on it. That is not a complaint, it is an irrefutable fact. I love that Epoman created a space where people can share their struggles with little fear that anyone will accuse them of whingeing, complaining, ingratitude, or something coarser.

As for the "pissing contest" (hahahaha a pissing contest on a dialysis support board....) Let's just stop right now, take a deep breath and remember that these are people at the other end of the keyboard.  My advice is do not type anything that you wouldn't say to someone's face.

This is excellent advice, Meinuk, and a welcome reminder for us all.
I am finding the information that is coming out of this discussion fascinating. I just underwent a transplant through a research trial that ideally will see me off all immunosuppressants within a year. Guess Big Pharma will have to do without my financial contribution. *fingers crossed*

[Rerun]

I think it is evil to make HUGE amounts of money off sick people and Medicare (which was intended for old people).  I just do.  I hate that I'm a part of it.   

[chris73]

Well i guess i will put my 2 cents in.....I work 65 hrs a week to pay for my meds and my just enough for my other living expenses.If i lost my job today i don't know where i would turn too it would be no way i could pay for the meds out of my pocket and insurance wont cover preexisting conditions.This is the main reason that my neph quit practicing medicine was  going into politics he said" I could do more for renal patients by lobbing for more help for dialysis/tx patients" and that transplant used to be the hard part but getting and paying for the meds  should be the easy part.

[Meinuk]

Chris73, you are not alone in this. The more time I spend at my transplant clinic (visiting) the more I realize how messed up this system is.

I've seen an elderly man sitting in the lab in tears.  Come to find out, his drug addict kid stole his social security, and he was homeless. Forget about the Part D donut hole for his meds.  The last I knew, the social worker was getting him bus fare to his brother's house in Philly.  You think his kidney is still working?

A young person at the clinic who has medicaid/medicare, and the pharmacy will only dispense his meds one week at a time. How can he look for a job when he is living with the stress of "where will his meds come from?"

An elderly couple who were having tx meds delivered to the clinic, and the delivery person would not give them the meds because they needed to be paid first. (there was a mixup with Medicare) The husband put his arm around his wife's shoulders and asked "Do you take mastercard?" (don't get me wrong, when I am 80, I am maxing out all my cards - but not on tx meds)

Should these people have NOT had a transplant if they can't afford the meds?  Then they would have been on dialysis, and that would be even more expensive. Or, they'd be dead. Where is the profit in that?

I was in a huff last year, and I walked off my job of nine years (well, it was walk or wait a few weeks for the new dean to start and be fired - I am still glad that I walked) This Spring, I finally bit the bullet and signed up for medicare (valid until 10/11), after seeing my savings dwindle each time I wrote a check to COBRA. 

Rerun, I know how much it galls you to be "in the system" but I for one am glad that you are.  I will never forget you walking into the restaurant in Vegas. The IHD shirt, your no nonsense attitude, and the fact that you have caused me to laugh so hard that I spit on the keyboard quite a few times - my world is a better place with you just a flashing cursor away.

Cara, in the beginning with EPO, it was amazing to see the lengths that people with connections would go to get it from Japan. It was also amazing to see the agony in the reps faces when they had to tell us that it would not be market ready as soon as we needed it. Part of what has made EPO synonymous with fiscal abuse in some circles is that it is such a miracle drug, people would pay or do anything to get it (sick people or athletes) And where there is desperation, there is abuse. (don't get me started on the Organ Market!)

But now that it is general knowledge, hopefully that is one of the factors that CMS took on board when they set their new rules.  Sadly, because of the EPO abuse, we are looking at other cost saving measures for therapeutics that were not abused.  Binders for example.  This is a case of one bad apple ruining a lot.  Or maybe I should say greedy LDO's ruining the practice of medicine.

A new study published in the Journal of the American Medical Association has concluded that patients in for-profit dialysis chains routinely get higher doses of the antianemia drug Epogen. These larger doses, while lucrative for the chains, can sometimes boost red blood cells above FDA levels. Part of the reason for the higher doses is financial. Medicare reimbursement encourages use of the drug, and clinics take in about 25 percent of their revenue through Epogen payments. What's more, drug maker Amgen offers volume discounts, which also encourages overuse. Another, more troubling reason for the large doses is that kidney specialists often hand off Epogen dosing decisions to dialysis clinic staffers, which means that doses aren't calibrated to individual needs. Meanwhile, the FDA is concerned enough about Epogen--and other erythropoietin drugs--that it placed its most severe warning on all of them.

Read more: Study: Dialysis chains profit from higher Epogen use - FierceHealthcare http://www.fiercehealthcare.com/story/study-dialysis-chains-profit-from-higher-epogen-use/2007-04-18#ixzz0qPCg3AsD

[totosidney]

I'll trust you'll show me the very basic courtesy of not applying it to my actions. Comparing the use of that phrasing to 'I hate dialysis' is ludicrous. Dialysis is a machine and process, not a person, and there is no vulgarity in that sentence.

I apologize. I didn't intend the word in any pejorative manner. The usage of the word as a verb/adverb is in a state of flux in modern culture and isn't considered offensive by everybody. I will be more careeful in the future. again sorry, noharm intended. respectfully..Sid

[cariad]

totosidney, you are right - the word is, according to merriam-webster, a simple synonym for 'complaint'. I made the assumption that you were slyly hinting that I was in fact being a bitch, which I see now was me overreacting. I appreciate your graciousness and apologize for misreading your intentions.

(This actually reminds me of a time I was volunteering for a playground build at my son's school. A man walked up to my husband and me and I swear he said "Where does this bitch go?" I laughed out of shock and replied with a harsh "Excuse me?!". The man literally went pale, looked utterly confused, pointed to the picnic table and said "Where does this go?" It took me a few minutes to realize he had actually said "Where does this bench go?" With his accent, he pronounced it 'binch'. )

[Rerun]

   

I'm sure all those times I "thought" someone was calling me a "bitch" they were saying bench!   

[Meinuk]

You know, I sometimes wonder if I should be left alone with internet access....  A couple of days ago, I got a solicitation from the NKF asking for me (us) to lobby for the Immunosuppressive Drug Bill. Of course, I had to ask....

Here is the conversation so far.... [edited to be in chronological order and contact info redacted]

>>> < 6/21/2010 9:46 PM >>>

What about doctors visits, hospitalizations and blood work? Will those be covered?

Thanks,

Anna Bennett

-----Original Message-----
From:
To:
Sent: Tue, Jun 22, 2010 3:14 pm
Subject: Re: Ask Congress to Continue to Support Immunosuppresive Drug Coverage

The legislation would extend only the immuno drugs covered under Medicare Part B (no other drugs would be extended beyond the current 3 years after the transplant).  We know the follow up tests and other expenses are often a challenge, but this should be alleviated with the expanded health care coverage that will be implemented over the next few years.


Troy Zimmerman
Vice President for Government Relations
National Kidney Foundation
www.kidney.org/takeaction

My reply today:

Has anyone asked why these drugs are so expensive in the first place?  Forget about R&D etc, that is standard in a start up.  But now we are in the generic phase, and these drugs are all over the map when it comes to retail pricing.  Does the NKF check to see if there is gouging going on either at the manufacturer or pharmacy level?

Since CMS will not negotiate their buying, are we supporting our tax dollars paying retail?  And saddling people with transplants with a 100 dollar premium that will cover two expensive drugs (the majority of tx being now treated with generic Prograf and Cellcept), while valcyte (imperative in CMV control) will be out of pocket at $35.00 per pill (non generic) as well as other medications for people who have co-morbidities (the majority of transplant recipients). Under this bill, Cipro won't even be covered.

I am starting to think that this lobby is simply guaranteeing payment for big pharma.

Troy, am I far off in this?  Please feel free to reassure me if I am.

Best,

Anna Bennett

[cariad]

You know, I sometimes wonder if I should be left alone with internet access.... 

You use your powers for good instead of evil, so I personally have no problem with you being let loose on the web.

I hope he responds. I will be interested to hear how he explains this.

[Rerun]

He probably has no idea what you are talking about. 

             

[Katonsdad]

I was transplanted 11 yrs ago in Aug 1999 . I was given the Cell Cept and the Prgraf . It was covered by insurance with a $50.00 copay per refill .  Now  Prograf comes in generic (on the market for 10 yrs) and my insurance uses mailorder so I get 3 months for the cost of 2 .  That gpes for all my meds. I do not know how others afford it.   If I lost my job I would be up a creek without the paddle,