Even the Institute of Medicine suggests that the US healthcare system is now suffering from an epidemic of over-diagnosis and over-treatment (exemplified by things like MRI scans for people with a “black eye”). And yes, this all comes with a $210 billion annual price tag. That’s about $700 too much, each year, for every man, woman and child in America today. If you want to get the picture, read Tara Parker-Pope’s posting on the New York Times “Well” blog today.
We are not trying to imply that all of this is in some way specifically relevant to the management of prostate cancer, but what is certainly true is that as a nation we are not going to be able to go on underwriting the excesses of the US health care system in this way.
Who do you think is paying for all of this? At the end of the day, you do. It comes out of your taxes, your pay checks, your Social Security payments, and what you are paying for everything else (because the people who make and provide you with “everything else” have to pay for the health care of all their employees too).
It’s worth really thinking, each time you doctor says, “We could do this” or “I’d like you to do that” whether this or that is really going to be in your best interests. Will it actually change the way you are being treated? Is there a risk that (like the MRI for a black eye) it will suggest the possibility that there is yet another problem that turns out to be nothing?
Since, we believe in putting out money where our mouth is, I will tell you that I commonly “Just say no, thank you” to tests that get suggested by some physicians I see. I do this after I have done my homework, so that I am comfortable with my decision. I am always polite about it, but I am all too well aware of how excessive testing leads down dangerous pathways to unnecessary procedures and recommended therapies. Less is not always more, but more is commonly not the best way to need less! (Just look at our obesity problem if you don’t believe that one.)
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Search for new and
ongoing trials on the
CTAG PCa web site
And what about high intensity focused ultrasound (HIFU). It was invented in 1941 in Indianapolis for prostate cancer, shelved until the French brought the technology back 30 years ago. Yes, it’s been in trials in the USA for many years, yet doctors at those hospitals won’t tell us that the option exists, so the trials go unnoticed. If the doctors would tell men they could have free trial of HIFU and explain it, men would enter the trials, and then if the FDA would approve it, it could save millions in cancer care, as it treats not only prostate cancer, but breast, liver, pancreatic and more, without pain and hospital time, like the other treatments, and what could beefed up ultrasound cost to treat cancer? Very little, and no drug usage either.
It appears to me that the FDA and the AMA have no interest in lowering the cost, or even in saving our dignity and lives.
NYT link broken
Dear Ron:
It has always been the responsibility of trial sponsors (commercial or otherwise) to promote the trials they develop and initiate, in association with the physicians who are enrolling patients into those trials.
Apparently, here in the USA, HIFU International, Ablatherm, and the centers that are enrolling patients into HIFU trials have failed to develop sufficiently compelling messages to those who might benefit from HIFU. This isn’t the responsibility (or the fault) of the AMA, let alone the FDA.
Thanks Dave … Technical problem; now fixed.
Forums banned any mention of HIFU for years, they would erase all posts. Doctors cannot mention HIFU as it is not FDA approved. Television couldn’t or wouldn’t mention it as it wasn’t FDA approved, only FOX News had one segment on years ago.
I have friends who went to doctors at hospitals where HIFU was in trials; they were not told about the option. I even have a friend who is on the Board of Directors of a prestigious hospital in New York City; he hadn’t heard about it. He had surgery and was mad as hell a few months later when he met me.
I have no idea what International HIFU or Ablatherm needs to do other than fund the trials, which they did, I’m sure they would love your guidance.
My wife even went to the lecture M. D. Anderson gives every year in Aspen. Someone in the audience asked if they knew about the HIFU trials ongoing at their hospital in Houston. All five doctors (one was the president) on the podium answered “No”. My wife then stood up and told them about my experience. They were silent, and only said they were happy for us that it worked out. The next year they would no longer accept questions from the audience.
HIFU has been suppressed, because it would save us millions.
Dear Ron:
I know you feel very strongly about HIFU. So do others. However, you do have some facts wrong, as follows:
(1) Any independent physician and any independent journalist in the media can talk about HIFU as much as they like — just as you and I do. The only thing that can’t be done in the USA is actually treat a patient with HIFU outside a clinical trial.
(2) HIFU International and Ablatherm have both failed to convince the majority of the urology community in the USA (and a lot of other countries) that HIFU will ever be a viable form of therapy for most men with prostate cancer. As a consequence, most doctors don’t encourage their patients to enter clinical trials. However, I have to tell you that people like me are also less than convinced of the value of HIFU as a first-line treatment. A lot of this is because of the way that HIFU International went about promoting treatment with HIFU in Mexico and the Caribbean as opposed to setting up good trials in the USA early on. If you don’t do things right in the beginning, the consequences can come back to haunt you.
(3) I am not so sure that HIFU treatment will “save a fortune” in the USA. You may not be aware of this, but what Medicare pays hospitals and surgeons for a radical prostatectomy in the USA is a lot less than $25,000.
I think that Ablatherm and HIFU International had a massive opportunity to “do the right thing” about 5-6 years ago and they completely messed it up. They won’t be the first or the last to make such mistakes. Is the situation recoverable today. Potentially, yes. But they still need to do the trials to clearly prove to the FDA that HIFU is safe and effective. Those trials do not all need to be done in America, however, and at this point in time they might be better off looking at doing them in somewhere like India or Australia or elsewhere.
I know you believe that this is all some sort of conspiracy, but I can only assure you that it isn’t. It has taken even longer to start to persuade the urology that active surveillance is a viable method for the management of men with low-risk disease. Both active surveillance and HIFU have been “outside the comfort zone” for most of the urology community. It takes immense effort to change beliefs, and if you don’t want to “play by the rules” then you need to be extremely compelling and innovative to get people to “see things your way”.
HIFU would not cost $25,000. if there was no need for doctors to travel outside the US to treat men, those doctors have many costs including attorneys fees to review every word they say, and they have to pay International HIFU for the use of the machine. If it were legal here, it could cost $5,000. and be quite profitable.
I have many friends who have also been treated with HIFU, ALL feel they are lucky, no one had any side effects, all are cancer free today.
If doctors can talk about HIFU, let me assure you they will not, I’ve had a few tell me that they are afraid of reprisals. One M.D. emailed me, and I quote, “It’s all about money as you know. The HIFU is not a pharmaceutical and if they can’t make money on it the FDA will slow its approval.”
Dear Ron:
A lot of physicians have no idea what the FDA does for a living. It has no interest in costs of therapies. That is not an FDA issue. All the FDA is interested in is efficacy and safety.
I will believe that the cost of HIFU is only $5,000 per treatment when I see it, but I will never see it if the companies don’t get the trials done, so the issue of cost is moot.
Are there a lot of urologists who don’t like the idea of HIFU and pressure their colleagues? Sure there are. This sort of thing happens in every type of business I know of. What’s new?
Does HIFU work well for a lot of men? Sure it does. We’ve had that conversation 30 times. We have also seen data showing that it doesn’t work so well in a lot of men.
What’s new? We are talking people’s lives and quality of life, not just business. Doctors won’t inform men of their options, so the trials sit, draining the manufacturer of it’s money.
Swiss doctors treated 10 people with HIFU for brain tumors. They did the treatment and doctors and patients all went out to dinner together, the same day. That was years ago, cannot find any more news on that.
You say doctors can talk about it, but a forum moderator told me that until HIFU was approved they couldn’t let anyone mention it. They said it would hurt poor people’s feelings. They banned so many men that finally they will allow some talk.
Ron:
Your passion is understandable. … The behaviors of others are beyond my control (and yours too, it would seem).
The MD Anderson lecture that my wife attended was a show of clinical ongoing trials. One of the doctors at the lecture was the doctor in charge of trials, yet when asked about HIFU he said he didn’t know about it.
Sitemaster,
Thanks much for the bullhorn.
Excellent article. I posted it on my Facebook page.
COULD GENERICS DO EVEN MORE TO CUT HEALTH CARE $?
The simvastatin (generic Zocor) tablets I take daily now cost just 19c each to my insurer — really cheap! No doubt that low-cost statin alternative is doing its part to keep health care costs from rising even higher. Zocor’s sister statin drug Lipitor also recently went generic, which will help further. Other important drugs I take for prostate cancer have also gone generic in the years I’ve been on them, and the substantial reductions in costs are helping; specifically, Proscar is now available as finasteride; Casodex is now available as bicalutamide; and Fosamax is available as alendronate. National statistics show an ever-growing proportion of prescriptions being filled with generics.
However, I also was recently taking a drug that has been available since the 1950s, and the cost to my insurer was $3,600 every 28 days. That drug is Thalomid (thalidomide), and I’ll bet the production cost for each pill is under a buck. Granted, company expenses for managing extremely tight restrictions on using this drug add to the cost for Celgene, but I am at a loss to understand why this old drug costs so much. This drug was originally for Hansen’s disease (leprosy), and I’ve been told that at one time the cost per pill to the consumer was extremely low.
Does anyone know the story here? I’m hoping the answer is not because Celgene has somehow prevented generic companies from marketing inexpensive versions. Whatever the answer, I suspect the same answer appies to other old drugs whose high current costs are aggravating the national and personal health care cost problem.
Dear Jim:
In theory, any generics company could now bring generic thalidomide to market. However, to do this they would also have to develop a a risk mitigation system to manage all the risk factors associated with this drug (just like Celgene did when they brought it to market). They are highly unlikely to do this because: (a) generics companies have no experience with that type of system; (b) Celgene holds a patent on the system that they developed that is still valid. So, to all intents and purposes, Thalomid is still a patented drug until some other company is willing and able to develop a completely new system to manage risk mitigation that is not in breach of Celgene’s patents.