David,

    When I was diagnosed with mm almost 5 years ago now, I had no medical insurance.  So of course, I took the cost of therapy into consideration at that time. I hope to write a longer article about it eventually for the Wall Street Journal.

I first went on dex alone.  At Rite Aid the cost for Decadron, the branded name, was 60 dollars.  The generic des at Rite Aid was 40 dollars.  At Costco, generic dex was six dollars.

I was also put on monthly Zometa.  I asked if the cost of Aredia would be cheaper, but because of the longer hospital time, it made no difference. I have never been convinced paminodrate, the generic Aredia, is quite as effective.  The cost of the generic was not a great deal less.

Then we added biaxin (clarithomycin).  At that time, there was no generic for the drug.  It was relAtively expensive at a a few hundred dollars.

When that stopped working, I was advised to try Velcade as induction therapy for a stem cell transplant.  Dr. Berenson said Velcade was far too toxic for my level of disease. And Velcade was very expensive.  So I went to thalidomide and dex instead, continuing with the monthly Zometa.  Please remember, I was still paying out of pocket for everything.  

 At Costco. 100 mg of thalidomide was 875 dollars per month.  At Rite-Aid, the same amount was 3,000 dollars a month.  I was on thalidomide and dex for about six months.  The last time, they told me on the phone the price was still the same.  When I got to Costco, they informed me the price had gone up.  The pharmacist told me that they had to give me the older price since that was what was quoted to me on the phone.  Is it any wonder why I am loyal to Costco?

Thal/dex put me in the mental hospital.  For that reason and others, I never went through with the transplant.  I had chosen Scripps-Green in San Diego for the SCT.  They treated me wonderfully.  The cost of the transplant there--45,000 dollars if nothing went wrong--was very good.  That factored into my decision.  At that time, a transplant at UAMS was 20,000 dollars.  But UAMS made you do all sorts of expensive things post-transplant and pushed dual transplants.  At any rate, money had played a role in my decision ewhere I was planning to have my SCT. Once again, I never had one, for various reasons.   

 I was in remission for about a year.  I took nothing, not even Zometa.  I got lab tests as infrequently as possible.  Lab tests were running me 350 dollars per month or more. (Quest charges uninsured patients about 5 to times what they accept from insurance companies for the same tests).  The freelite test was especially expensive.  It never worked for me fortunately.  At that time, I considered going to Tijuana to get my lab tests done .  They have labs there that run tests for Americans on the weekends.  You go in the morning and you get your results in the afternoon. The cost is about 1/10 of what medical labs charge here, and the quality is about the same. 

After a year, I came out of remission. I went to dex alone once a month. It did nothing.  Dr. Berenson recommended I go back on thalidomide and dex.  I balked since the last time it put me in the mental hospital.  i asked my local oncologist if we could try biaxin, dex, and Zometa, the Zometa being given the same time as one of the dex pulses.  This was a relatively inexpensive treatment.  By that time, clarithomycin had come out as a generic, or it did in a little while.  So the only expesive thing was the Zometa at 1300 dollars a month.  

I did not know at that time, that what I asked for was very unusual.  Most mm specialists assume if a treatment stops working once it will never work again.  This is not what happened. Dex, biaxin, and Zometa kept my numbers in check for a year.  I was not trying to get into remission--only to keep my numbers stable.  After a year, it stopped working.

About halfway through this year of dex, biaxin, and Zometa, I got insurance through domestic partner coverage.  It covered the Zometa, 6 months earlier than they said it would.  

When that stopped working, I went to Velcade, cytoxa, and dex.  I probably never would have tried Velcade previously because of the cost.  That stopped working after 7 months.

I stopped treatment for about 6 months.  I then moved on to Doxil, dex, and Velcade. That treatment was especially expensive, but I was not paying for it.

 When that stopped working, I tried thalidomide again.  Although insurance would have covered it, I ordered the thalidomide from England (www.alanpharmaceuticals.c...).  Celgene's pricing policy on thalidomide is unconscionable.  My cost was about 200 dollars a month.  Thal/dex did not work and again caused me mental problems.  Most insured patients would not pay out of pocket, but I could certainly afford the 200 dollars.

I am currently on Revlimid and Medrol, and the cost to the insurance company is staggering.  I try to do what I can to minimize my costs because of my history, but I can do nothing about the price of Revlimid.

I did not expect to get insurance.  If I had not, I was prepared to go to various trials since I could not afford certain treatments.  Although both Millennium and Celgene have patient assistance programs, I probably would not quality as I own a house.  I do not think I should have to sell my house to pay for their drugs.  Also, San Diego has an extremely high cost of living.  I could move of course, but I grew up here.  Few people here would qualify for financial assistance programs from those companies,,even some who are considered at poverty level. Local costs of living are not considered.

When I had no insurance, I considered various options, including going to a U.S trained hematologist I know who practices in Tijuana because the cost of doing medical practice is much lower (no inflated medical malpractice insurance).  There is a new state-of-the art hospital in Tijuana, right on the border, that was even supposed to take Blue Cross insurance from patients from California.

There is always the possibility that I will lose insurance, and if so, I have to make certain chocies.  Cytoxan is cheap.  Thalidomide from England is not especially expensive. Trials can be cheap, depending on how many bone marrow biopsies you are requirted to have.   

Obviously, I always do think of costs of treatment, and when I can do something about it, I try to minimize it so that it costs society at large less, even though my insurance covers about everything.  

Currently, I am getting frequent blood transfusions, and I do worry about the cost and the cost of Aranesp, which seems to do nothing for me. My local oncologist has told me, in his opinion, Aranesp does nothing for mm patients, especially for me. Dr. Berenson does not agree.  I think it is a waste of money, and I may ask to stop it.  

As you may remember, I tried a supplement from Costa Rica that supposedly can boost hemoglobin.  My motivation was to try to avoid such frequent blood transfusions.  It tasted quite awful--like a combination of dirty socks and chocolate.  It was not real expensive compared to Aranesp or something.  If I can find something that will help me reduce my costs to the insurance company, even at my own expense, I really do not mind.  Other patients on the same insurance plan are funding my healthcare, so I try to do whatever I can do to minimize my costs.  

That is how I look at the cost of my therapy for mm.

Alex Maas

San Diego, Ca

No SCt 

I'm assuming you applied for California state insurance coverage? What happened to that? Also in emergencies be aware that hospitals have to treat you and after treatment you can go to the hospital and work out payment or be completely deferred depending on circumstances. Sounds like a nightmare- my monthly insurance is $495 a month and then the co-pays so I'm not sure I'm ahead but mine hasn't progressed to MM but last year it was approx. $8000 just for MGUS. Hmmm....