I would like as many of you who care to comment on it to read this article. It is well researched, the information in it is not OPINION, but carefully documented facts. When you have read it, I would like you opinions on why this situation is the way it is. Think of yourselves, think of your neighbors who have not had a direct contact with cancer. Think outside the box. Think what billion dollar organizations like ACS, or hundreds of million dollars a year organizations like Komen have to do with it if anything. Think what the medical establishment is like, in all respects. Please give me back your ideas no matter how obtuse they ay seem.

I am going to be talking with Senator Rockefeller next week. I have conversations scheduled with his staff. They are working on the health care bill and and addendum to the Medicare laws. Thanks.

http://oralcancernews.org/wp/medicines-to-deter-some-cancers-are-not-taken/?

A couple of observations, obtuse as they may be ... incongruent?

A) information overload.
One day coffee is bad then next day coffee will protect you from Alzheimers and cancer.... eventually people say screw it.
B) ignorance of the public. A report on CNN or web of some quack is treated at the same level as real researched and supported info.
C) research by definition does hardly ever claim 100 % effectiveness, the quacks do
D) money, something that does not cost a mint cannot be worth much. Plus who is pushing this? Also there is not much money in it for the MD's.. although there ARE those who push this now. (May I point to US hysterectomies.... )
E) Even if you have a decent scientific background it is difficult.. (Se, Vit D, E, kinase inhibitors, etc). Plus a lot of stuff makes sense in a narrow application (i.e. hyperthermic theapies etc).
F) did I say B....
G) Political considerations... Gardasil. Also, as a physician you can get in trouble if you tell a patient that they are overweight.
... This is a fact (in GA).
I) We need a place where you get spin free info ... besides OCF. NIH might (should?) be the place......

... and I am off the soap box....

M

Recently I asked my husband if he would have quit smoking if he knew what lay ahead for him. He told me that while he could logically understand the risk of smoking he wouldn�t have believed that it would ever happen to him�somehow, someway, he was beating the odds and would continue to do so.

I could understand his logic. If you are feeling relatively healthy there is no real reason to believe or focus on the possibility that you are vulnerable to a deadly disease. The body is not sending any warning messages. Why would you take a medication now, on a daily basis for something you don�t have and might not ever get?

I hope that someday researchers develop a test that clearly demonstrates to someone their risk of developing cancer. Individualize the approach to patients! Let them know that cancer is not something that happens to other people- it�s something that will happen to you- no matter how you are feeling today.

If someone had shown my husband the results of a test that showed his risk for developing this cancer as clearly as they did on the day he was told he had cancer, I think his response would have been different.

Brian,

Fascinating article!

I think there is an inherent distrust of doctors and a huge distrust of 'big pharma.' How many times do we hear that the Cure to Cancer exists but is being hidden from us in order to reap the big profits from treating cancer? Not to mention this weird notion that taking a pill every day for life is a huge inconvenience or something. (When I had to take radioactive iodine to kill my thyroid as a result of Graves' disease, that was the biggest warning, that I'd have to take a pill every day - like that was some huge burden.)

People also think it won't happen to them, case in point, smoking. We all know it causes major deadly diseases and yet, I still see young people smoking! Its all I can do to not walk up and show them my tongue. But they're invincible, right?

I think there's just a huge stigma about taking drugs, supporting 'conventional' medicine, giving money to 'THE MAN' and as stated in the article, this notion that by going an holistic or natural route, we're the ones in control.

I'm going to ponder this further.

- Margaret

Public not always made aware of these potential cancer preventing drugs. Most PCP depend upon the pharm companies to keep them inform so if they don't know, we aren't told and if the pharm companies don't spend the advertising $'s. Heck even if they do (Gardasil) response can be dictated by other issues like religion or politics.

Today something is touted as medically good for us and tomorrow it's medically bad for us so why listen?

Human nature, even if we are told to do something we just refuse to do it.

The good and the bad...in our political quest to protect us from false medical claims we also have made it sometimes impossible to bring something to the public that is beneficial? The FDA won't approve the Gardasil vaccine for say oral cancer unless they have a study that would take decades to prove even though logic says if you have a vaccine that effectively kills 100% of HPV 16 and we know that HPV 16 is linked to a large % of SCC in the oral cavity, then it doesn't take a brain scientist to conclude that eliminating HPV 16 will therefore eliminate THAT cancer.

Great article. My random thoughts:
Both individuals' and organizations' will to survive is on the most efficient and easiest way to get from point A to point B.

Prevention takes a back seat when you are vividly seeing and feeling the short term consequences of each decision to get through the day.
Research groups survive on funding.
Politicians survive by re-election.
Medicare survival needs funding and/or cuts. How to manage the ratio of available tax payers vs recipients.

Most intriguing to me is the Biomarker research. That is where I would put my money. This seems to have the most promise on better quality of life for society as a whole.

Brian

Very provocative article. On a personal level, I was relieved to read it and see no mention of any drug, diet, nutrition or exercise program that would have prevented my base of tongue cancer(or any of the OCF family's oral cancers). The news that there were clinically proven preventive medicines for both prostate and breast cancer came as a shocker to me. Equally compelling was the debunking of the diet and nutrition claims that I have railed against here.
At the risk of being cynical, I feel that large Anti-cancer groups like ACS or Komen are just as bad as big pharm in keeping all the research dollars and so called public service ads focused on the twin illusory chimeras of "a CURE" or "diet & exercise". Shame on them for not spreading the word of an affordable and easy medicines proven to reduce the chance of prostate and breast cancer.
There is hope though. Many people see past the American Heart Associations pablum and follow the South Beach Heart program of taking statins daily. The immediate problem is that I did not see any glimmer of a similar preventive breakthrough for oral cancer (except perhaps for Garasil but since I am not HPV positive, that would not have helped me anyway).
Good luck in your talk with the Senator - and thanks for sharing this article.

Interesting article. I think Gardasil could be an easier sell than the preventative drugs you mentioned that require taking pills for 5 years of longer for something that has a lower than 50% chance (in most cases cited) of happening. Taking a daily pill creates a psychological state of "intrusion" of anxious thoughts about why you're taking it and reminding you that you might get something serious down the road. It's one thing if you've been diagnosed with something (high blood pressure) where the event has actually occurred. It's another thing if you're taking a medication for an event that may or may not occur. Gardasil faces those same issues of perception of one's risk, stigma and cost and effort(barriers), and intrusive thoughts. But in comparison to the others, the three vaccine doses are over pretty quickly and can occur when you're 9 or 10. Also, if one needs to take a pill to possibly prevent breast cancer, would one eventually be offered pills to prevent colon, pancreatic, ovarian, prostrate, etc. cancers? For some, organic diet, vitamins, etc. likely seem simpler and one is promoting health rather than preventing disease.

Sophie

People are hesitate to take medication on a regular basis for something they may or may not get and naturally worry about potential side effects. Vaccines might be an easier "sell" as many are already required.

Serious trust issues due to changing and sometimes contradictory medical advise.

The Blame Game - When medical establishment does not have an explanation, blaming the patient for something she/he did or didn't do (poor diet, weight gain, etc.) and then discovering that it had nothing to do with getting cancer, does not instill trust.

Do we need more research funding for brand new approaches? Money for researchers not tainted by old assumptions? Why are certain cancers more popular and therefore receive more support and money? Obviously these are not original ideas.

Honestly with the public might help - stating that this is very complex and you can do everything "right" and still get cancer.
Lottie

I agree with some of Lottie's comments above about possibly over-funding for some cancers (e.g., breast and colon) and/or not targeting the public messages in a manner which will actually reduce deaths. I believe there is serious underfunding for many types of cancer that have a high mortality rate.

I do not think that we get to the point that you would have to take pills as a preventative for each possible cancer, there probably are some commonalities. Moreover, when such pills may be available, so would be genetic testing/metabolic profiling to allow a individualized selection for the cancer that are most likely in a given individual.

Many people already take daily vitamins and other supplements, I see little difference with this. For that matter how many people are taking their daily aspirin? What about vitamin D? I see absolutely no psychological issues with this. Taking a baby aspirin does not remind me that I am getting a heart attack, quite the opposite actually.

M

Great comments people, and helps me rethink my upcoming conversation. I am bringing this back to the top since I have two days before the meeting. Anyone else that what to jump in please do so.

For many years here in the UK it has been the norm to prescribe a small daily dose of asprin to help protect against heart attacks in what is perceived as high risk patients.Last week the media was full of doctors reporting on the possible dangers of taking daily asprin.Its so frustrating ..good for you one day,dangerous or worse still useless the next.Are theses studies flawed, published too soon,or just wishful thinking.

Brian

Liz's comments ring a bell with today's Washington Post report on the New England Journal of Medicine study questioning the worth of 2 drugs recommended by lots of doctors for preventing heart problems (Vytorin & Zetia)by exactly Heart drugs questioned
You have to wonder whether or not Woody Allen was prescient in his movie Sleeper dialogue:
[quote]Dr. Melik: This morning for breakfast he requested something called "wheat germ, organic honey and tiger's milk."
Dr. Aragon: [chuckling] Oh, yes. Those are the charmed substances that some years ago were thought to contain life-preserving properties.
Dr. Melik: You mean there was no deep fat? No steak or cream pies or... hot fudge?
Dr. Aragon: Those were thought to be unhealthy... precisely the opposite of what we now know to be true.
Dr. Melik: Incredible. [/quote]

At the risk of sounding holistic, I believe the modern medical system in the US needs a change of thinking from a crisis-oriented care system to a more proactive approach. To me this means going beyond standard disease care and developing a program for helping people stick with recommended changes long enough to see a benefit, not just pushing the latest drug du Jour for the perks coming from the drug companies.

It seems that it is no longer about patient care, but what can be done for the bottom line and what procedure will befit those goals regardless of what the patient may actually need.

One has to wonder what could be accomplished by taking half of a drug company's budget for doctor perks, advertising and Washington lobbyist and re-focused that on patient care and more research.

Charm - with you again. I just finished reading that article about Vytorin & Zetia.

Not exactly comparable to above but another example of blame the patient is peptic ulcer disease. Remember when patients were told they needed to relax? They were causing their ulcers due to high stress, aggressive personality, etc. Turns out it's caused by a bacterium, treated with antibiotics. Lottie

Medical knowledge is increasing and is getting more refined. The fact that treatment modalities are altered to include such findings can only be positive. I am pretty sure that a MD with an ulcer got exactly the same advice as the rest of us. It simply was what was understood at that time. Then again, lifestyle has an effect on disease development and progression, if an MD cannot tell a patient that they are overweight (when they are massively obese) then this is plain insane (same goes for smoking).
There is a difference when you take a drug for an existing conditions which you must treat right now or when you are trying to prevent something long term. In the latter case the dosages are generally much smaller and drugs must be taken for a very long time (while having no symptoms of any kind) before one can even evaluate the benefit vs long term risks, in addition a large number of subjects are needed.

I would want to know what is available and have the option of making a choice, while knowing that there are no totally harmless drugs and this includes many vitamins and supplements.

M

I agree with Kevin. A pro active approach to treating patients would be a refreshing change. Im not talking about taking meds for years to possibly ward off a serious disease. Most people wouldnt do it. If there was a shot or series of shots to protect from serious diseases then it would be more successful than a daily pill.

If a patient sees a doctor trying to avoid a more serious problem later, then the doctor should help them. This only would work if the doctor had already established a relationship with the patient. There are too many hypocondriacs and drug users out there. For instance, if I go to the doc for a upper respitory infection, I already know I will become sick from the antibiotics. My doc should treat me for both issues.

There are so many flaws with our health care system and medications. All too often a PCP becomes a puppet of whatever the drug reps who visit them are pushing. In other countries there are different regulations and standards drugs must pass before hitting the shelves. From what I understand, other countries are much quicker at getting products out to the public.

The Guardisil shot should be better explained to the public. It was offered to my daughter by our PCP when I asked about her shot records. I was already planning on having her get the shots, I wanted to see if my PCP would offer it. My PCP did offer it and explained it very well. However, there was not even one brochure in his waiting room about it. This should be available to boys too.

Markus, Your point is of course valid. Medical knowledge changes. However, I believe that there is a bias, which includes the advice given to MDs by MDs, to look for non-medical explanations when a medical cause is unknown.

In the above comment, I'm referring to bias with regard to personality causes, that often persist even after they've been discounted (autism & detached mother).

I would consider obesity and many other lifestyle issues as a medical issue. lottie

Christine said....This (Gardasil vaccine)should be available to boys too.

It is available for boys but your PCP will probably only recommend it for Genital warts as the CDC gave it it's Permissive Recommendation which is one step below a Routine Recommendation that the female version has. In a Routine Rec the doctor is obligated to inform the patient of the availability and if it's approved for the VFC (Vaccine for Children) program, which both the male and the female version are, then it may be free to the patient. Under a Permissive Rec, the doctor is not obligated to recommend it but if a patient asks for it, then it will be made available and again free if the patient comes under the VFC guidelines.

Re the advertising of this product, I think Gardasil has hit the market really strong on the female front and in spite of that we have only seen a 17% vaccination rate. It remains to be seen what, if any, advertising is done on the male side since again it's only approved for and can therefore only be advertised for Genital warts.

With only 17% of females getting the prescribed 3 shots and the male version only recommended for Genital warts, males will continue to be totally at risk to not only contract the virus but spread it.

David,

I asked my family doctor to give it to my son and he said "no" and he said it was not allowed by the FDA. If I'm willing to pay for it, do you know how I would go about getting it for him?

Margaret

Margaret,

First off, it is approved by the FDA as a vaccine against genital warts even though it will clear the HPV strains that cause SCC in the oral cavity, anus and penis and frankly if he's that much of an idiot I would go elsewhere to have my son cared for.

I really don't know how he can say no if you tell him you want to protect your son against genital warts.