Request for a Christmas present for all!! A new roll call on Herceptin reimbursement

Christmas is a terrible season to be burdened by uncertainty regarding how to pay for the life-saving medication that Herceptin is proving itself to be.

Now that more her2positive early breast cancer patients are on herceptin I would like to suggest that this site be utilized to provide information not available elsewhere, due to the secrecy surrounding the pricing of medication.

Neither the individual providers/hospitals, nor Genentech nor the insurance companies will inform the public (or the individual patient) regarding what their reimbursement is for the Herceptin they provide.

Genentech is afraid to anger those who buy their product by making the providers'/hospitals' profit margin more transparent , providers are afraid to make transparent how much the price they charge exceeds their cost (as its cost must reflect the cost of keeping an inventory of Herceptin at hand, the cost of an inhouse pharmacist, equiptment to mix it sterilely at the time it needs to be used, salaries for infusions nurses and other costs of cancer centers--they try to utilize this profit to pay for their new PET/CT, etc), and the insurance company does not want providers to know what the maximum amount they reimburse is, in fear that every provider would then charge the maximum and costs get even more out of hand.

Of course dosage depends on body weight, but not unreasonably, as the vials of HERCEPTIN ARE multi-use vials, ie, you don't have to charge for two if someone needs and a a tenth vials. But I assume few of you ladies weigh twice as much as others of you do.

From previous posts on this website I recall that Stanford Hospital charged $17,000 per 3 week dose (medication only). I understand Cedars-Sinai in West Hollywood, CA charges approximately the same amount, as a private oncology group in Beverly Hills is charging $8575, stating they tried to set their price at half what Cedars did.

The reason I am inquring has to do with the fact that this group is not a contracted provider for any insurance and, in the case I am referring to
the insurance company (not a PPO or HMO) has declared that the usual and customary price for the medication provided in Beverly Hills is $2811.

Inquiries have been made, and it has been made clear to them that this is a triple dosage provided every three weeks, not a single dose provided weekly. They have not budged.

Articles published this past month show the price of Herceptin in both the US, the UK and most Western European countries to be about $50,000 annually (usually quoted as "the wholesale price")

Another posting regarding your "posting name", the location of your treating facillity, the price you/your insurance pay per herceptin infusion (medication cost only), whether it is given weekly or every three weeks, and (if it is not too rude to ask) your weight in lbs or kgs WOULD BE GREATLY APPRECIATED and could be utilized by all the women now fighting their insurance company not just for reimbursement altogether , but for
reimbursement of the amount they are being charged. I recognize that many of you have PPOs or HMOs so that you are not responsible for the balance and therefore ignore the amount actually paid, but if you could take the time and trouble to peruse your "explanation of benefits" and find this extremely important (and carefully guarded information) you would provide a great service to the her2neu positive community. I understand there are approximately 400 members out there and, of course, many unregistered "hangers on" Let's see how big a Christmas present we can fashion!

Thanks for the Christmas present!

[Lolly]

You're asking for personal and sensitive information, yet provide no corresponding clues about your identity and wherabouts. I'm uncomfortable with your approach.

Lolly

I am a university student and have been doing my best to help a neurologically-challenged patient under treatment for her2neu positive breast cancer patient file her insurance papers.

I became aware of your site as a source of information regarding what insurance companies are paying for herceptin when I was told of a previous "roll-call" (which I found in your archives) regarding Herceptin pricing.

The lady I am trying to help has been under treatment with herceptin for over six months and her bills are mounting.

I was totally dismayed to discover the absolute refusal on the part of her insurance to pay even the "wholesale" price of herceptin,stating that the "usual and customary price" of the triple dose of herceptin she receives every three weeks is less than a third of the price she is charged (which is half the price of the nearest large hospital cancer center). This leaves her to pay over $6700 for every 3 week infusion.

After unsuccessful attempts to gleen information from representatives at Genentech, as well as the billing office of her oncologist and the billing office of a the nearest cancer center, I suggested the repeat roll call on your site.

It appears Herceptin pricing is secretive.

I was not trying to sound secretive, nor like a "plant" from some insurance company or oncologist's office. It seems noone is being straight-forward, perhaps for the reasons I hypothesized in my post. Everyone seems to have their own agenda.

With 39 persons reading the post, and yours as the only response, I do not hold out much hope that the her2group will repeat the roll call they participated in earlier this year which helped a member fight the inflated charges demanded by her treating hospital.

I know that the lady I am assisting would have greatly appreciated if not an outpouring of information, at least some sort of response besides suspicion of my motive! Not only does she have the disease to fight, but her insurance company as well. A little information would have been a great Christmas gift for me to give to her.

How will patients ever be able to bring some transparency to what hospitals and providers are charging, and insurance companies reimbursing, if they do not feel free to share information on what they are being charged and what their insurance companies are paying for Herceptin? I was so impressed by the outpouring of support on this website during the previous roll call regarding Herceptin pricing and your response(Lolly) and lack of response (38 others) has amazed me.

The suspicion now shown reminds me of tenants of an apartment complex who will not discuss their rent increases with one another for fear that, if it gets out, they will receive a greater increase. Sharing information on the pricing of Herceptin cannot help but enable patients to get a better price or get the chance to go somewhere else where the price is more affordable!

No, I am not one of the insiders on this website and perhaps you are right that if I am not a regular contributor of information or advice perhaps I am not entitled to ask for an outpouring of such "sensitive" information (perhaps it is the body weight request which kept people from coming forward!)

I remain confounded as to how much one is being charged and how much one's insurance is paying is considered so " intimate" and "sensitive" information. There was no request to identify oneself by name, merely to list treatment facility and location, insurance company, amount charged and amount reimbursed, whether weekly or every 3 weeks and estimated body weight.

Members and nonmembers of this site freely shared this information during the previous roll-call /request for information on Herceptin pricing. Was it because it came from someone they were well acquainted with from previous postings? Is that a rule of calling for a "roll-call"? Does providing my name and city really make the difference? Perhaps you can enlighten me.

Laura Adams
Charleston, South Carolina

[Sheila]

Laura
If your friend is being denied financial reimbursement for the Herceptin, she can either contact Genentech that makes Herceptin or contact your state Attorney General...they will look into it. There is a wide range of pricing it seems, and reimbursement depends on the individual insurance company. I filed a claim a year ago with the Attorney General and had the price reduced for everyone who received the medication at the hospital I go to for treatment. Believe me...hospitals are the most secretive about what they charge for treatments and medications.

From my expereince of posting on this site it is very open. This is the christmas period and traffic seems lower than usual which is what you might expect. I think in this case your understandable emotional anger at the situation you are trying to sort out was not failrly directed. We have all proabably been there.

Many insured people proably do not see their bills, and are simply too thankful that they are paid to either prod their insurance company for details or face the reality of the treatment costs, and the implications.

Is it unfair that many do not have access to medicine - yes.

Are you likely to be able to start a popular "uprising" on the price of drugs - no. History suggest that mass movements only occur when the sense of injustice is greivous AND widely spread.

Routes with a greater chance of success might be freedom of information requests - examination of potential legislation eg anti trust - the media.

The only agencies that will mediate prices are governments (because they simply cannot afford the prices) or market competition.

I feel for your anger frustration and indignation as you rail against perceived injustice of the pricing of this product, and at such a young age. I only say "perceived" as this is a subject I know nothing about and so cannot comment on the specifics. It certainly is very expensive - is it "fair value" I simply don't know. Do drugs companies make excessive returns - I dont know.

I am afraid that injustice is self evidently the consequence of human nature and behaviour. You will come accross many more such indignities and injustices over the years. For any given example usually everybody involved at an individual basis would say this is unfair should no be this way but collectively go with the staus quo - for job -familly - beacuse it is easier - because we switch off - because we have other things to worry about - because we are powerless, because of lack of leadership, rotten apples etc and we are all guilty to greater or lesser extent.

Such is the nature of power, authority, our aquisitive nature, status being vested in the display of consumption, our fear of being out of line, promotion often not being based on ability, human frailty, rotten apples, and a host of other traits. All of which suggests to me that such has it always been and will always be until we start plugging our brains into "computers", neural nets etc. A whole new chapter, the borg, seven of nine.............. any better who knows.

If "global" human behaviour outcomes are a cake, put the same ingredients (the human mix) into the cake, on the average over time you will get the same old cakes out. The desruction and breakdown of many previous civilisations makes the point. Have we with all our access to technology learnt much. The world will see.

You are facing a multi billion industry and human frailty - some combination.

You will be a little sadder more cynical and "wiser" at the end of your road.

I wish you luck. My cynicsm comes from extensive experience, but such efforts have to be made.


RB

[Marlys]

I may have a little input on the topic of how hospitals charge and even more about reimbursement. I am a retired operating room nurse and I was responsible for maintaining charges for O.R. supplies based on their costs. We marked items up considerably with really a bigger mark-up for lower cost items than for the most expensive ones. That being said we are a non profit facility and what that means is we must make up the losses for those who cannot and/or do not pay by charging these big mark-ups to those who can and /or do pay.
Example: implants used for spinal fusions might cost us as much as $10,000 and Medicare reimburses us only $4400 for the entire hospitalization. I am on Medicare and TriCare for Life. I receive an explanation of benefits from them on what they have approved. The hospital charged $5290.14 for Herceptin alone. (This was for the first dose) and Medicare reimbursed them $670.43. Tricare for Life paid $711.28. Without knowing for certain what the hospital pays for the drug I think it is safe to say it was more than $1381.71. Hope this adds some insight into the mechanism that goes into what hospital charges versus what it costs them.
Marlys

[Lolly]

Laura,
I'm sorry my response angered you and made you feel unwelcome here. We do share a lot of personal information through this site, but for myself it does make a difference if I "know" the person I'm talking to from other posts....sorry if that seems unfair but that's just how I am. You do have some responses now, and maybe some of the others will jump in now that the holiday's are winding down.

I'm not adverse to helping you help your friend, but as Sheila points out the prices and reimbursements vary greatly from one area/insurance company to another, and especially from state to state as most if not all insurance companies now take their cue on coverage/reimbursements from Medicare, and Medicare reimbursements are not even close to being universal from one state to another due to Federal guidelines. Some states get many more Medicare dollars per patient than others.

If you have accessed the archives, you already know what my insurance company reimburses compared to what my treatment center bills, and I remember that I did specify the dose as per kilogram of body weight. Nothing has changed as far as price or weight, so you are welcome to use my information as you see fit. I think Sheila's suggestion are also good, and come from experience, so good luck in your quest.

<3 Lolly

[sarah]

In France the price for Herceptin for 3 weeks including pre-meds, nurse, place to sit, etc. costs 2200 euro at a public hospital. I would be surprised if the hospital would charge excesively here so this should be close to what Genetech and Roche charge for it but I'd love to know. the high cost is a great barrier for many and why the protocol is for a short time.

Here are some links on patient billing, access to data, agencies etc. which may help you on your path.

RB

http://www.cancerlynx.com/healthform.html

http://www.cancerlynx.com/healthcode.html

http://www.cancerlynx.com/healthrecord.html

http://www.cancerlynx.com/balancebill.html

[Ginagce]

Hello. I'm new to this site so I'm not nearly as educated as many of these women but I do have my bill in front of me.

I am treated at Hospital of the University of Pennsylvanie, which is an NCI center here in Philadelphia.

I am charged $7,525.00 for each herceptin dose which I receive every three weeks. The bill lists "43 Herceptin 10mg.". I weigh about 160 pounds.

I am very fortunate in that I have an HMO health insurance policy and I only pay a $30 co-pay for my treatment.

Hope this helps.

Good Luck to you.

Gina

[Ginagce]

P.S. I have no idea how much of that my insurance actually pays. I don't get those statements from HUP but I will ask next time I go in. Now I'm curious too.

Good Luck

ANY AND ALL information is GREATLY appreciated!

Laura

[sarah]

In most of Europe, Herceptin apparently can be genetically made after 2010 and in the US, after 2012 - this may help the price.

[Christine MH-UK]

Herceptin is a biologically produced drug. In order for any generic to be produced, it would have to run through as extensive trials as herceptin originally completed. As such, there will be relatively few competitors and the price is likely to reflect this. The more promising scenario is better treatments for all her2 patients that will do a much better job of preventing and eradicating secondaries for good.

I think comparisons can be good. My oncologist is the UK was quoted 60,000 pounds (about $80,000) for one year's treatment from BUPA, but half of that from a Healthcare at Home (I weigh about 120 pounds).

I completed my chemotherapy in Nov 02, however my oncologist feels I may still benefit from Herceptin. I live in Ontario, Canada and my scenario is not covered by our provincial health care plan. OHIP will cover those newly diagnosed up to 7 months after completion of chemo. So I am paying for it myself. The cost every 3 weeks is about $3K Cdn and then there are costs for the infusion. Altogether for one year it will work out to be $80K Cdn.

Since it is extremely unlikely there will ever be a clinical trial for women in this scenario (why bother -there are a finite number of us since all newly diagnosed with Her2 get it and all who do develop mets will get it), I would dearly love to see Roche Canada provide it on compassionate grounds to all who want to try to take it. I have contacted them, but so far to no avail. My argument is that if I had been part of a trial (I was never offered one, nor did I ever hear of it here) and part of the control group, I would be offered it. Since the timing of my diagnosis and treatment is similar to the timing of the trials, this argument has merit.

If anyone has any suggestions about lobbying this company, please post information here.

[Becky]

If I had to pay for the year of Herceptin myself, it would cost approximately $72,000. We costed this before I knew if our insurance would pay because we were going to take a loan against our house to pay for it. Thankfully, Cigna paid with absolutely no arguement. Because it is a negotiated drug, the cancer center will be paid approximately $61,000 for a year of Herceptin and I pay $25 copay for each visit (which is now once every three weeks).


Happy New Year,

Becky

[AlaskaAngel]

With all due respect, I strongly differ with Ontario's conclusion that those who could benefit and who are not benefitting now are just a "small group", implying that this group should not be considered worth the effort to be included with authorization for use of Herceptin.

Ethically, about 20-25% of ALL breast cancer patients from years past (other than those already falling with the time-frame provided for under the ASCO recommendations) are also HER2-positive and could potentially benefit from treatment with Herceptin, even if they have not yet recurred.

This includes years of survivors who were never tested for HER2, years of patients who (like ME, for example) were tested but were never told what the results were, and years of patients who were tested and were incorrectly classified.

So in terms of those who potentially could/would still benefit from access to Herceptin for prevention of recurrence, the group is NOT small and is not confined to "early stage".

I will and do ask that others here acknowledge this fact, so that as a group we aren't helping to minimize opportunities for these patients, who are currently being prevented from documenting by clinical trial what their situation truly is.

AlaskaAngel

[Lolly]

AA, have you tried contacting Dr. Slamon, who is on the Board of Directors for the Her2 Support Group, about the need for such a trial? If he agreed with your analysis it would be incredible for you and all the others in your situation...maybe you've already pursued this angle. Just a thought.

<3 Lolly

[RobinP]

I just got to put my 2 cents into this arguement for late Herceptin adjuvant trails. Martine Piccart, herself, PI of the HERA trail states in her SABC live webcast that if we know our target, her2, then we should use the appropriate targeted therapy, Herceptin, without hestitation. So what stops her and lead speakers at the SABC from recommending Herceptin for all her2+ bc? Why not fully inform the public and give them the appropriate weapons they need to fight the enemy before them? Or at the very least develop a clinical trail for late Herceptin if they are so hung up on evidence based medicine to the "T". AA, you have my support.

[Val Pfeiffer]

My EOB (Explanation of Benefit) shows my charge for Herceptin as follows:
Trastuzumab, 10 mg $ 740.00

Now that I am on the triple dose, the charges are exactly 3X the $740:
Trastuzumab, 10 mg $ 2,220.00

I weigh 115 pounds.

It sounds like I am getting a pretty good deal on my drugs! These charges are before the HMO discounts. I have not been paying a co-payment, but starting in 2006 I will pay a $70 co-pay for IV drugs administered in doctors' offices.

happy new year and good luck :-)
Val