Article - Drug pricing in America

[virdieblue]

Interesting article, especially concerning cancer drug pricing, by Leigh Purvis (AARP) In National Women's Health Activist newsletter.

nwhn.org/dont-hate-the-play...

[walkingspirit33]

It has long been known that drug companies have often inflated their product R & D costs to justify the high to exorbitant  prices here in the U.S. .As usual our elected officials are paid to look the other way or actively block opposed to the drug trade.It is done in far more then just pharmaceuticals , food , etc. . 

[Grieb]

My wife of 61 years was diagnosed with CLL 14 years ago, soon after phenotyping was first widely available for definitive analysis.  Much of what I have learned, in the years following her diagnosis, was from patient communications through this blog and I owe you (collectively) a great debt.

As a first attempt to repay this debt please accept that, while drug costs may be high, the incredibly rapid progress in recent drug development for effectively treating CLL would not have occurred in the absence of a large profit POTENTIAL. Estimate development costs by looking at the number of PhD researchers employed by each drug-development company and assume $200,000 per employee (I am confident this is a low estimate when essential overhead items such as "health insurance" are included).

My wife and I live in the US and those of us living here are really blessed. Contrary to this article, we have available the results from all of the double-blind clinical trials (see the  FDA website and the scientific papers, readily available via the internet, presented at the national medical-conferences). If we are not impoverished, we can be treated with the drug of our choice even if it is not yet FDA approved for our situation. In addition, we can be treated, generally, by the doctor of our choice. What more can we ask for?

I was not satisfied when our local CLL specialist recently recommended treatment with an FDA approved, first-line drug that has proven to be an easy target to beat in double-blind trials. I was particularly unhappy that he made his recommendation in the absence of DNA (FISH) analysis of MY WIFE'S defective B-cells. Please recognize that CLL is not a disease. It is a nearly infinite family of diseases. Your disease is distinguishable only by DNA analysis of your own defective cells. At the time I did not know the cost of FISH analysis. I only knew  that the analysis was difficult, time consuming and expensive. However, in the US medical system, I was able to insist that it be done  prior to any treatment decision.  A blood sample was sent out-of-state for the analysis. The analysis took a couple of weeks and the cost would have been covered by our insurance if the doctor had requested  prior approval. However, the cost was just several hundred dollars (not several thousand). Fortunately my wife did not have the dreaded 17p deletion and her immunoglobulin is mutated. Without this information, drug selection would have been unconscionable!!

I feel that any doctor recommending CLL treatment, in the absence of patient-specific DNA analysis , should lose his license to practice. Please, all of  you patients, demand DNA  analysis while you are still in wait and watch and again prior to beginning any treatment. If your insurance will not cover the cost, beg-borrow-or-steal and get it done. What better investment can you make?

 Based  on my wife's DNA analysis. our drug of  choice was Gazyva. My wife has a delicate digestive system. Gazyva is reported to cause nausea that is severe enough to force some patients to discontinue treatment. I want all of you to know that, because we live in the US, WE WERE ABLE TO SELECT Dr. Jeff Sharman to begin the treatment and, by prior agreement, our local CLL specialist administered the following 5 IVs. My wife's blood analyses have been normal ever since the first, very low Gazyva IV. 

I realize that all of this non-personal information is readily available. My motivation is to encourage all of you to take responsibility for your own health. I read in this BLOG, that many of you are taking vacations and doing all sorts of things that cost money but I never read about anyone spending their own money for a better health outcome. Where are your priorities? For any of you living in a country that severely restricts your health care options, go somewhere else or CHANGE THE SYSTEM!

[virdieblue in reply to Grieb]

No doubt we get great care, and I am grateful. My concern is that the US is bearing a heavier burden of the pricing, and how these high prices inflate the cost of insurance which is difficult for many to afford. I think the cost rise is referred to as unsustainable...

[AussieNeil Administrator in reply to Grieb]

Thanks for your informative reply from your experience with your wife.  Given the difficulty many of us experience outside of the USA with even getting a simple and relatively inexpensive FISH test done (which is all that is needed to check for 17p/p53 problems), it was interesting to hear of your difficulty in the USA.

Previous community discussions about the wisdom of knowing prognostic results have shown that for many of us, we'd prefer not to know them while in watch and wait.  I can understand that preference, but wholeheartedly agree with you on the critical importance of having testing done for treatment related prognostic indicators prior to starting testing.  Many of the prognostic indicators with CLL do change over time; some during watch and wait and more during treatment, so it really is essential to have pre-treatment testing. Otherwise patients may well go through the risky and let's face it, for many of us, a rather gruelling experience for little to no gain because we've been treated with an inappropriate treatment protocol for our particular version of CLL...

Neil