When you add up the bill..
The latest issue of The Economist (May 26th, 2011) has an interesting article titled “The costly war on cancer“. It is worth a read. This article and an email I received from one of our members on the costs of participating in a clinical trial got me thinking about the costs of cancer diagnosis to the individual and society as a whole. Here are some cancer drug statistics that blew me away.
- Herceptin, the breakthrough breast cancer drug that became available more than a decade ago made $6 billion dollars last year. Gleevec (CML drug) raked in $4.3 billion. Avastin out-performed the lot, making a cool $7.4 billion dollars last year.
- What do we as patients get for these hefty price tags? Compared to earlier therapy options, Provenge – a type of vaccine for fighting prostate cancer – increases average survival of patients by four months. Cost of one course of Provenge is a mere $93,000. Recently approved melanoma drug “Yervoy” costs $120,000 per course and FDA approval was based on the fact that it improved average overall life expectancy by 3 1/2 months. Remember, these are averages. There will always be outliers in any statistical set of data. Some patients will live longer than that, others will die sooner.
- Please click on the link to read the full article in “The Economist”. There are a lot more eye-popping statistics.
What is the value of a few more months of life? Is it worth hundreds of thousands of dollars spent on a slim chance of success? Each of us has to answer that question for our selves. The rational part of me has one answer. And I would be lying if I did not also admit I would have gladly given up everything I had, spent every last dime I owned, to have my husband with me for just a few more weeks. And hope springs eternal. Who knows, may be the next miracle drug will do the trick, may be it will be the real CURE we have all been waiting for? Maybe my guy would luck out, maybe he would be the one to beat all the averages and medians, he would be the one to get the impossibly long remission? People do win lotteries, don’t they?
The real costs of clinical trial participation
We have discussed this topic many times before and I will not belabor the points we have made already. I want to focus on one particular cost of clinical trial participation that I was not aware of.
One of our members is participating in a new clinical trial, a combination of kinase inhibitor + Rituxan, at one of our most prestigious research institutions. I won’t identify the member, the specific trial or the institution for obvious reasons: our young lady does not want to rock the boat and piss off the researchers involved! Her life may well depend on it. Here is what she had to say:
I have had many Rituxan infusions, so I know what that costs. Most recently I think that amount has been in the neighborhood of $6,000 per infusion for the Rituxan. The clinical trial pays for the kinase inhibitor, since it is still experimental drug and not commercially available; but not for the second drug in the combination, namely Rituxan.
Guess what they are charging per infusion! $25,000 per infusion for Rituxan. Actually, they are charging about $50,000 per infusion, but the insurance company has discounted it to around $25,000. That is per infusion so the 8 infusions required in the clinical trial are costing our insurance around $200,000. That is for the Rituxan alone.
Our local oncologist used to charge $500 for the extra two hours of chair time, because I need to get the Rituxan very slowly. But when I get it at the research institution, the charge is $5,000 for the extra two hours of chair time per infusion! They have dozens of other charges to our insurance, too many to even count. I am really worried because my insurance has a lifetime cap of a million dollars for me. And the charges of this clinical trial are burning through that at an alarming rate. I sure hope this clinical trial gives me a long remission!
You know what they say, beggars can’t be choosers. I wonder how many patients are shell-shocked at all the hidden costs of clinical trial participation – but dare not speak about it. After all, you would not want to be removed from the trial for non-cooperation, would you?
As for me, there was a time when I too worried about burning bridges with powerful researchers and drug companies. Not any more. My hostage is already dead. What else can happen to me?
I am aware medical costs and how we as a society manage them is a topic that generates much heated debate in this country. But please remember we are all blood-brothers and sisters here, no matter what our political affiliations. So, debate away, but please keep it civil. Do me proud folks – you guys have been a real class act thus far.
25 comments on "Cancer’s Cost"
I am shocked at the cost of this particular clinical trial. There are clinical trials and there are clinical trials. Thanks to a notice here two years ago, I was accepted into a clinical trial at NIH in Bethesda for 0 stage untreated CLL folks. It was the best thing that could have happened to me. I have the top research people in the country looking at my data. I live 1000 miles away from Maryland, and they pay me up to 500 miles one way, plus a night or two of lodging. I drive there once a year and have blood work done locally in the 6-month interim. I have had a CT scan and a FISH test…all free. Bone marrow biopsy will be in the near future, again, free. When the time comes for treatment they will release me from this program, but they will advise me on the best possible protocol and I may be able to get into another clinical trial at NIH. I couldn’t be happier about it. Thanks Chaya for alerting me to this study.
I recently completed the Revlimid and Rituxan trial at UCSD, under the care of Dr James. I had 12 Rituxan infusion sessions, including the initial Rituxan infsion which was split over 2 sessions. While the Revlimid in this trial is the experimental drug (and thus provided for free) the Rituxan was paid for by me or the insurance company. I paid nowhere near the amount mentioned above. In fact I would guess that all my Rituxan infusions in total did not add up to $20,000.
It’s curious that the research institution seems to be looking at this as a profit center. I didn’t think that was their charter.
I wonder whether all patients at the “prestigious research institutions” are charged the same $50,000 for Rituxan treatments?
Perhaps it time for Chaya/CLL Topics to publish a price list for various CLL drugs at various institutions- trials or non trials- and what the “wholesale cost” of these drugs is…
We as a society do not really manage medical costs. We prefer to avoid the difficult conversations about death/mortality, end of life care and the limits of what we can and should pay for. We seem to mostly go along…
I am also in the “Natural History of CLL” Clinical trial at NIH (like Hillhopper above). Like many CLLTopics members I read extensively. the most I expect from CLL trial is to contribute. I still have full responsibility for dealing with my CLL. Perhaps the clinical trial will prove helpful but I’m not counting on it. It is costing me for expenses related to the trips there. I’m going ahead and deducting as a medical expense.
For the convenience of our newer members, the NIH trial referenced in the comments (“Natural History of CLL”) was reviewed on this website back in March of 2010. Here is the link to it:
http://updates.clltopics.org/544-a-clinical-trial-perfect-for-our-times
The idea of a price list is fantastic. This is just the kind of thing a patient advocate group should lead, imo. Who else is in this kind of position? Health care centers are businesses, that means they should price at the highest price point that does not reduce demand. Most cancer patients have little options to shop around, especially in an acute disease.
Bringing some competition to the table seems like it would be a great benefit to patients, although it will surely step on some well heeled toes.
Patients have the right to demand transparency with no conflicts of interest, especially when there are lifetime caps on many people’s health care.
Keep up the good work Chaya et al.
Rituxan is marketed by Biogen Idec & Genetech in the U.S. and Hoffmann-LaRoche in Canada and Europe. Sales are over $40 billion in the last 10+ years. Financially it is a blockbuster drug for these companies so it’s no wonder its use is pushed very hard by sales reps. There is competition in the pipeline for much cheaper biosimilars. This mab has been around a long time and I would be curious how much of these profits have been plowed back into research to find better alternatives. Until biosimilars hit the market place or patents run out, don’t expect these big pharmaceutical companies to spend money marketing better replacements that would harm their current golden goose; it’s the nature of the system. Is it over-priced and and over used? I certainly don’t have the information to make that call but I’m not sure I trust these companies to be fully objective. I believe its long-term bad side effects are under reported. It has little specificity amongst B cell populations but usually produces improved lab counts. I would have to think long and hard before I would spend my wife/children’s inheritance to extend my life 3 months.
It seems to me what one pays in an outpatient oncology clinic for Rituxin [I received] and what the charge in trial arena huge difference. My insurance paid 2k a bag and another 1k for services and follow up. I really can’t wrap my arms arround why the difference. On a more personal level would have consider stem cell trans. But now why? It really takes a selfless person to do it for science and the hopes one day a cure can come from all the lives that have participated… Thank you for bring these difficult topics for all to think about.
chaya:
as always, thanks! you are amazing! (and so are all of the other participants on your site!).
i was originally on a clinical trial – a little over 5 years ago, the fcr-lite protocol. at that time, my insurance company would not cover/pay for rituxan (it was still “experimental!), so much for the insurance companies forward thinking. as we all know know,the fcr protocol (even the “lite”) is still one of the “gold standards”.
thankfully, during the trial the rituxn was covered by/paid for the drug company. at that time, the/my monthly healthcare bills (for thje treatment, testing, etc) were in the range of $70,000 to $100,000 per month!
now thankfully i am still in remission. my immune system is still shot. i still receive ivig every 4 to 6 weeks. the bill for each of these infusions/treatments is a real bargin at only $25,000 to $27,000 each time! the insurance company is not happy to pay for this – they told me “it’s a very expensive treatment”, but fortunatley they have no choice. (if they did i am sure they would not pay for it).
i agree with you comments re: clinical trials and infact have encouraged people who i know (and periodically counsel) to investigate and participate in clinical trials – if one is readily availalbe for their particular diagnosis.
thanks agian! hope you are well?
alan
pittsburgh
Besides the various costs of treatments etc., there is the cost of the monthly visit for the current trial that my husband is no participating in. (his third) Even with medical rates and as many economies as possible, it costs a minimum of $800-$1200 monthly. This may not seem like much to some, but he is on disability and there is no extra room in our budget. So we quite literally give up necessities in order for him to participate. However, as Chaya put it so well, we would give up anything for more time. Since he he has stage 4 refractory CLL and has already survived 10 years, we are quite aware that time together is precious and if it means going without, so be it.
There are numerous complex issues touched here and exploring them in a chat room format is difficult; perhaps a separate session at one of the CLL Forums?
There is no price list and there are no standards for the value of services or products; the approach appears to be to charge an outrageously high number and accept a fraction of that to settle the charges. (Chest X-ray charge $768.60, insurance paid $13.61, co-pay $3.40; recent example)
Elek
This is a fascinating and very important topic and I can’t thank Chaya enough for providing the background, and opening the door for discussion. I had no idea that trials were that expensive for those without Medicare and still in the “for profit” insurance engine. I would love to see some equivalent numbers for those in Rituxan-based trials who are on Medicare: what is the Medicare negotiated rate?
I’m sure there are accounting complexities (and tax implications)between hospital billing and insurance company responses. I think of the odd “accounting” that is done for Medicare part D (prescription “plans”). The insurance provider (not the government) has a “drug price” that the client pays, but the higher “retail rate” is used to accumulate the benefit the client has received for the year, and when that accumulation exceeds a certain amount, the insurance isn’t there for the rest of the year (doughnut hole).
I only bring that up because of the odd math that seems to exist in this world where hospitals (and other providers) negotiate with insurance companies and carry these two sets of numbers. My heart goes out to those without some insurance entity on their side as they are caught in that “retail” world when they can least afford it.
Anyway, building a list of observed rates by institution would be very interesting. We could start with Rituxan for University Research Hospital X and see what
1) Trial participants were billed with private insurance and with Medicare
2) Standard of care patients were billed with private insurance and with Medicare
We could also include uninsured patients in both categories if they exist. Sigh .. I had naively assumed that trials were the way for uninsured patients. Now it may be that trials are even more expensive than standard of care patients, even subtracting the “free” experimental component?
Again .. thank you Chaya. This article has really been an eye opener and it is extremely relevant as one wants to understand the real economic engine of health care. It may also provide another facet on why more people don’t participate in trials.
Lynn
PS .. Looking back, I see others are enthusiastic about creating a price list as well, which would be valuable for many reasons .. both practical and then more academic, as providing some insight on how the system really works and how trials really get paid for. We need to come up with a way of creating this list that doesn’t compromise Chaya and her relationships, so I don’t feel comfortable asking her to do it and put her name to it. How shall we go about this?
Lynn
Lynn and others:
If you guys are willing to do the hard work of getting the information together, I will gladly publish the result of drug price comparisons on this website, with as much fanfare as I can muster. To hell with compromising my “relationships”. The only ones I care about are my relationships with you. As long as you guys are willing to support my work, I am content.
I think it is a good idea to stick with a few basic drugs to begin with. Say Rituxan. Arzerrra. Bendamustine. Revlimid. I picked these four because they are all still on patent and bloody expensive. By comparison, fludarabine and cyclophosphamide are relatively cheap. How long will it be before the generic Revlimid out of India will become legitimate? This is a small and simple molecule, its equivalency with the present standard is very easily established. Same goes for bendamustine. Rituxan and Arzerra are huge biologics and establishing bioequivalency is pretty tough to do. I will settle for cheap generic versions of Revlimid and Bendamustine for now. Anyone willing to tilt with this windmill?
I think it can be done if a bunch of you got together, organized yourselves and decided which drugs, which institutions you want to cover – then get into the serious business of investigative reporting.
This article is uncomhotyably interesting; particularly to someone who lives with what in the States was reviled as “socialist” health, and therefore dangerous….makes one wonder for whom?
It is also interesting when one knows that also here there are sections of society who call people who have to use the national health service, for irresponsible scroungers. ah well, there are all kinds of views. Over here a lot of the private medical insurances will not carry on providing at all for what becomes termed as a “chronic” condition.
Keep the discussion going, and do keep Chaya free of trying to get the details; she provides an invaluable service, not just hor you lor in the States, but also for many elsewhere! She manages to be clear, crisp and factual….and above all human and even has humour! She ought to be gold-plated…thank you so much.
Mette
As always right on Chaya. And it is probably not the scientist and real doctors who are getting rich form these drugs. I’m pretty sure that most of them do what they do for more than just the money.
To us in the UK the cost of these drugs are staggering. With our NHS National Health Service, we are privileged not to have to worry about costs. However if the present government’s proposals go through, we may well be joining the USA soon enough. I just think it’s a wonderful idea that everyone puts in a small amount all through their lives for if and when you need any medical help – mostly at the beginning of life as a baby and at the end when you’re old.
Transparency in the costs of these drugs seems like a really good idea in promoting a level playing field. Also having the cheaper drug versions from India to compete in bringing the price down.
I will never take up for the drug companies. They are doing their best to screw us. We do need to look at the Gov. regulations that run up the cost to the drug makers and the researchers. What use to be a 3 page sheet to do a clinical trial from the gov. is now 300 pages. It starts with gov. regulations then they dump on the drug companies, then the drug co. dump on the researchers, then the researchers dump on the patients with the cost. Its a vicious circle, with us being the loosers in the end. Raymond Parker
Great article, thank you Chaya.
Monique
When my husband was trying to get Arzerra in a small clinic locally, our insurance company agreed to pay for it but when the clinic named their price (like pulling teeth) they wanted $150,000 per infusion, drug only. The insurance company was pretty stunned, indicating that the wholesale cost was probably around $45,000 per dose and so they thought that mark-up was a bit too much. So Mark did not get his Arzerra! It is like a shark feeding frenzy with some of these drugs! We rarely get a look at this ourselves as patients, but – wow.
Beth
Chaya, I can probably get the prices charged for Rituxan and some of the others at Mitchell Cancer Center in Mobile. Of course what an institution charges and what actually is paid are oftentimes two different prices. Usually Medicare drives the bottom line price.
Does anyone know what Medicare pays for Rituxan? Just regular Medicare, not part D.
Art
In general I support medicine companies making as much money as they possibly can. I also kinda support US citizens paying more for drugs that are much cheaper elsewhere. The more profitable they are the more apt they are to spend the kind of money they have to spend to develop newer and better drugs so we can all have hope for the real breakthrough that is just around the corner. Waiting out the expiration of patents before generics can be sold is painful, but on balance is a very real incentive to develop newer/better proprietary drugs – those of us that can afford (I can’t) these very high experimental drug prices are serving the greater society by speeding the time when cheaper/better drugs become available. Is it fair that the more affluent get better care/opportunities – probably not, but it’s a system that incents drug companies to make better drugs.
In a perfect world, the more profitable these companies are the more apt they are to have real competition. Absent real competition from other companies I fully support the idea of publishing whatever pricing data everyone can find as that is an excellent way to add an element of competition in the pricing. I don’t know what it would take to create more competition, but I know that real competition eliminates the abuses we all see and leads to better products and lower prices.
I also jumped on the opportunity Chaya created by giving us a heads up on the “Natural History” study along with Hillhopper and MSGolub and am quite delighted with the service and especially the price. The price to participate in this one could be zero if traveled coast to coast and back in same 24 hours – did it once, not again. Probably shortchanging future $ needs but I’m using the NIH partial reimbursments as “seed” money to justify taking few grandkids with me each trip to see the sights in D.C. and to get some quality time with that generation while I’m able. I’m sure I’m not the first to find a lot of good that can come from the “cancer” diagnosis.
Ken
I did a quick search of the costs of Rituxan via the Medicare Part D drug plans comparative list.
The pharmacy retail cost to the consumer of one 50ml vial of Rituxan 500mg ranges from $4500 to $6000. How much that price is stepped up by various institutions probably varies widely.
The typical cost that the insurance carriers pay is roughly $3100, depending upon the carrier.
The NIH is funded by the taxpayer. This year the cost was $30 billion+. The NCI alone was $5 billion+.
Art
My suspicion is that there may be something incorrect about these numbers as they are so much higher than I’ve ever seen anywhere. Nevertheless, it is disgraceful that any institution would rape patients and their insurance companies.
As a retired healthcare worker must say that any oncologist or institution that charges even one dollar extra for extra “chair time” is in the wrong and should be mightily embarrassed!
Most clinical trials are more expensive than necessary to begin with because of all of the extra LAB tests & other studies (eg, Ct scans. BMBs) as well as all of the follow visits which are scheduled (necessary, but usually more frequent than would otherwise be clinically necessary) as these ate usually charged to the patient and their insurance as well.
Hi Everybody– We’re trying to compile a list of how much is charged at various facilities for Rituxan, Bendamustine, Revlimid (lenalidomide) and Arzerra (ofatumumab).
If any of you have seen the costs of these drugs used on you or your loved one, would you let us know the cost and the institution?
For example, at Mitchell Cancer Center of the Univ. of Southern Alabama, for RITUXAN they charge the Medicare allowed price of $930 per each 100 mg used (375 mg/mg2 is common). I believe the Administrative fee (which includes the chemo room charges) is $300 for the first hour, and $44 for each additional hour.
They don’t use REVLIMID.
The price of BENDAMUSTINE is $1370 per each 25 mg increment.
The price of ARZERRA (ofatumumab) is $740 per each 100 mg increment.
I’m guessing that most facilities linked with universities accept the Medicare allowable charge. But we’ve heard wide variations in the cost of these drugs at private insitutions.
We’d appreciate your responses. Either post them here, or you may Email me at gulfportdoc@gmail.com. Thanks! ~Doc
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