Doctor Knowledge of Cancer Treatment Options, Costs Key to Advising on Proper Medical Care

Jul 3, 2008 Full story: Newswise 23

The growing number of cancer treatment options and their widely varying costs suggest an increased need for oncologists to understand economic issues in cancer care and be able to discuss these issue with their ...

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Gail Perry

Bradenton, FL

#1 Jul 3, 2008
This is absurd. Patients should be INFORMED of costs, but *doctors* should not be giving or withholding information because a proposed treatment is expensive. They have no way of knowing what the patient's resources might be when his or her life is on the line.

Since: Dec 05

Union, NJ

#2 Jul 3, 2008
It amazes me not only that some private insurance carriers don't like to pay for oncologic in vitro chemoresponse assays but that they don't emphatically mandate it as a requirement for obtaining chemotherapy reimbursement against ill-directed treatments. Evidence in support of these tests is more than sufficient to justify them.

Profit, as we have seen, is a powerful motivating force. Among the private payors, at least, the profit motive is entirely consistent with the goal of the tests, which is to identify efficacious therapies irrespective of drug mark-up rates.

Everyone is scared to death - and rightly so - at what is going to happen to the healthcare economic system with increasingly expensive new drugs that benefit only a small percentage of patients who receive them. Hence the headlong rush to develop companion diagnostic tests to identify molecular predisposing mechanisms whose presence still does not guarantee that a drug will be effective for an individual patient.

The pressure, in fact, is so great that these molecular companion diagnostics they've approved often have been mostly or totally ineffective at identifying clinical responders (durable and otherwise) to the various therapies. Nor can they, for any patient or even large group of patients, discriminate the potential for clinical activity among different agents of the same class.

The FDA could benefit too, as they find themselves under increasing pressure to allow new drugs into marketplace while at the same time protecting the safety of potential recipients of those drugs as well as the financial interests of those who will have to pay for them.

I think that in both of these areas - private insurance carriers and the FDA - there is a very real opportunity to make a substantial impact and contribution, an interest in saving the healthcare system perhaps billions of dollars a year by ensuring that expensive treatments are used appropriately.

Committee chairpersons, committee members and persons in congress who may have personal interests not only in discovering new cancer treatments - everybody wants that - but also, in the "here and now," using currently-available cell culture assay technologies to improve the effectiveness of existing drugs and save lives today by administering the right drug to the right patient at the right time.

PFH

Since: May 08

Saint Louis, MO

#3 Jul 10, 2008
Gail Perry wrote:
This is absurd. Patients should be INFORMED of costs, but *doctors* should not be giving or withholding information because a proposed treatment is expensive. They have no way of knowing what the patient's resources might be when his or her life is on the line.
Gail, you make a good point, however you have to understand some of the underlying implications to the cost discussion. Telling an indignant patient about a treatment and its potential benefit to them, only to find out that it not economically feasible to administer, can have a serious emotionally detrimental effect.

In my opinion cost needs to be a consideration and dealt with gently and rationally, but you are correct in saying that it should never cause a doctor to completely withhold pertinent information or or options.
Gail Perry

Bradenton, FL

#4 Jul 10, 2008
"Gail, you make a good point, however you have to understand some of the underlying implications to the cost discussion. Telling an indignant patient about a treatment and its potential benefit to them, only to find out that it not economically feasible to administer, can have a serious emotionally detrimental effect."

I think you meant "indigent," but as it happens, I am one of those people with no insurance. My doctor had no way of knowing whether I could afford to pay what it would cost or not, but that did not stop him. His office connected me to a social worker who helped fill out the forms for altruistic programs. At first pass I did not qualify -- barely. However, even though it has been over a year since I finished chemo and six months since I finished Herceptin, they are *still* working to find me financial relief. As long as I pay what I can pay each month they treat me happily.

I am "correct in saying that it should never cause a doctor to completely withhold pertinent information or or options?" I am correct in saying that it is the doctor's job to make medical recommendations, the very best recommendations he or she can make. It is NOT their place to first decide what they feel I can afford. Maybe I have a wealthy relative. they don't know. Maybe I'm eligible for an altruistic program. Maybe the PRACTICE has a fund for such situations (as it turns out, my doctor's does -- they hold fundraisers, and patients who can afford to,donate to it.

Believe me, if anyone understands the "underlying implications of the cost" it's me.

If the doctor doesn't tell me what the best treatment for me is, I don't have a chance of finding a way to pay for it. My God, if he had done that ... I don't even like to think about it.

I also don't believe that the reason researchers are looking for more sensitive tests to determine treatment options is money. Lives are on the line. Get the wrong treatment and you could die. All these treatments can compromise your health, and people should not be receiving treatments that won't be effective for them. They aren't perfect yet but that doesn't mean there's some nefarious motive involved.

I say again, doctors, don't decide, based on what will necessarily be incomplete knowledge, what your patient can afford. You aren't in charge of their money, and you don't know what resources they do or do not have. Your job is to give the best medical advice you possibly can. Mine did, knowing that I might not be able to pay for it, and thank God he did.

Been there, done that, PFH, and I'm so glad it didn't go as you think it should have.

PFH

Since: May 08

Saint Louis, MO

#5 Jul 11, 2008
Gail Perry wrote:
I think you meant "indigent," but as it happens, I am one of those people with no insurance. My doctor had no way of knowing whether I could afford to pay what it would cost or not, but that did not stop him. His office connected me to a social worker who helped fill out the forms for altruistic programs. At first pass I did not qualify -- barely...
Gayle, while I appreciate your passion, I think your aggression is a bit misguided. Between your spelling lesson and the defensive tone of your reply I believe that you may have misunderstood my comment.

A physician's number one priority is the health of the patient; that is not being debated here. No one is advocating that the doctor should decide what a patient can or cannot afford, simply that it should be a part of the discussion.

Also, the varying efficacy of many cancer treatments today is a larger economic issue than much of the public understands. Its rarely as black and white as you insinuate ("get the wrong treatment and you could die"). Sometimes the discussion is surrounding a $75k treatment that may or may not extend survival by 2-3 months at best. If I was put in that position, I would consider that information relevant to my decision making process.

The economics of our current health care system are unsustainable. Lets not fool ourselves, we live in a capitalist society. There is a reason that AIDS treatments haven't made as much progress as they could/should have. The majority of those who need it would have no way of paying for a treatment. Yes, funding is pouring into the development of these tests because they will help people, but lets also acknowledge that there is a monetary motivation as well.

Please don't jump to such conclusions when reading comments on these forums. Most of us have the same wish: an efficient, effective, and sustainable health care system capable of delivering life saving treatments to those in need.
I congratulate you on the success of current battle over this ugly disease. I have no doubt that with your determination, you will prevail.
Gail Perry

Bradenton, FL

#6 Jul 11, 2008
"Gayle, while I appreciate your passion, I think your aggression is a bit misguided. Between your spelling lesson and the defensive tone of your reply I believe that you may have misunderstood my comment."

There's no "aggression" here. I disagree with you. That does not make me aggressive. In addition, yours wasn't just a spelling error. You used the wrong word (indignant). I didn't jump to any conclusions. I took you at your word. Own your words.

I stand by what I said. It is not the doctor's place to concern himself with how a patient is going to pay for treatment before they even know what all the options are. MD's should never govern what they say by their estimate of a patient's ability to find the funds to pay for a treatment, and I'm very glad my doctor did not that.

But, by the way, determination and attitude does not determine who lives and who dies when it comes to breast cancer. Attitude affects day-to-day quality of life, but not how many days you have.

The best way to have lots of those days is to get the best treatment available. My first oncologist listed what I needed even though she knew I might struggle to pay for it. My second oncologist seconded those recommendations even though he knew I would have difficulty paying for it.

Since: Dec 05

Union, NJ

#7 Jul 12, 2008
Side effects are another very important consideration for both patients and physicians when making treatment decisions particularly with newer treatments that could provide longer periods of time without advancement of disease. The costs of managing side effects in patients with cancer can be significant.

Different treatment regimens have very different side effect profiles. Reducing the doses of treatments does not appear to affect the efficacy of drug combinations which may lead to lower cumulative toxicity.

Cancer sufferers are taking doses of expensive and potentially toxic treatments that are possibly well in excess of what they need. It would seem that pharmaceutical companies are attracted to studies looking at the maximum tolerated dose of any treatments. It is suggested by some that we make the search for minimum effective doses of these treatments one of the key goals of cancer research.

An increasing number of drug studies are developed through collaborations between academic medical centers and drug companies. In fact, pharmaceutical-industry investment in research exceeds the entire operating budget of the NIH. It is important to understand the influence that industry involvement may have on the nature and direction of cancer research. Studies backed by pharmaceutical companies were significantly more likely to report positive results.

Over the past couple of years, if you watched TV with any regularity, it would have been difficult to miss the direct to consumer advertising that touted the benefits of some drugs over others, especially for patients undergoing treatment for cancer. Even to the point that buses covered with "shrink wrapped" advertising being strategically placed outside major cancer centers for patients and their families to see.

Drugmakers are going directly to the consumer at a time when their products are indeed at the margins of evidence-based medicine. On one hand, pharmaceuticals advertise extensively and the advertising is manipulative in the extreme. On the other hand, even NCI-designated cancer centers do this sort of direct to consumer, hard sell advertising. And in cancer medicine, the media advertising is no more misleading than the one-on-one communication which often goes on between a chemotherapy candidate and an oncologist.

More must be spent on analyzing drug data, and the need for larger and more detailed studies to figure out why there is an association between pharmaceutical involvement and positive results.

http://jco.ascopubs.org/cgi/content/full/25/2...
Gail Perry

Bradenton, FL

#8 Jul 12, 2008
"
Cancer sufferers are taking doses ... that are possibly well in excess of what they need."

Evidence, please?

I've had breast cancer, and I am extremely grateful to my ongologists, who treated based on the best information they had available at the time. Both were completely honest with me about side effects, and PHYSICIANS were on call 24 hours a day should I have significant side effects.

I didn't, by the way. I am sorry but I think it is reprehensible for someone to come in here and try to scare people away from chemotherapy, and if someone is going to do it, I think that person should state what their interest is. I don't mean more explanation of their viewpoint but what their background is. Why should we be listening to this person? What is his or her expertise to be telling us about what's wrong with cancer treatments?

People's lives could be on the line here. Yes, I know, there are risks with chemotherapy. Having been through it and having researched it thoroughly I am well aware of that. But I am also well aware that my doctors have done the very best they can to give me the best treatment they can given the information they have at any given time.

So the drug manufacturers are going directly to the consumer. I don't LIKE that, but I recognize two facts about this country of ours: 1) we have freedom of speech and 2) our economic system is based on capitalism. That means -- advertising.

This makes no sense ... "to figure out why there is an association between pharmaceutical involvement and positive results." Huh? Why? What a sweeping question. Good research would never ask such a question.

By the way, your link was incomplete. It ended with "..." and didn't work.

Since: Dec 05

Union, NJ

#9 Jul 12, 2008
Major health care issues are discussed on blogs and discussion boards more extensively than they could ever be discussed in academic articles. The ability of readers to leave comments in an interactive format is probably the most important part of most blogs and discussion boards.

The interactive format allows rapid responses to medical and health care issues which frequently intertwine moral, ethical and legal concerns, and provides valuable feedback and commentary not available through traditional media.

Blogs and discussion boards are increasing the visibility of laypeople medical experts, who share tips about treatment and care giving from personal experience, and others have relied on them for straight talk about their health issues and bloggers often provide links to other blogs they favor.

As always, some cautiousness is needed on them because some bloggers can have a hidden agenda, like some of the main line medical and health care associations can have. I am providing information and a point of view. I am not making a decision for anyone.

For an oncologist, or anyone, telling a cancer patient that chemotherapy and radiation treatment are the only hope of survival, strikes total fear by telling them they would die in a short time without it. Fear is the greastest tool an oncologist has to snare a fearful victim.

The url link worked for me.

http://jco.ascopubs.org/cgi/content/full/25/2...
Gail Perry

Bradenton, FL

#10 Jul 12, 2008
"Major health care issues are discussed on blogs and discussion boards more extensively than they could ever be discussed in academic articles."

They talk about whether the Earth is round on blogs for the Flat Earth Society, too. That doesn't make it accurate.

gepawel, what I see from your post is that you declined to reveal what your background is, and yet you continue to make disingenuous remarkes, such as:

"For an oncologist, or anyone, telling a cancer patient that chemotherapy and radiation treatment are the only hope of survival, strikes total fear by telling them they would die in a short time without it."

So: we know that you are neither an oncologist nor any other kind of MD, or you would know that oncologists customize their recommendations to each patient. When it comes to breast cancer you didn't even begin to list all the options (depending on the type of cancer).

So we know what you are not, but we still don't know what your agenda is. We only have your superficial claim to "provide information," but what you're providing is misinformation. your comment that oncologists "snare fearful victims" is just plain disgusting, so I will tell the truth:

Folks, for me, chemo was a cake walk. It was just another bump in the road of life. If it's appropriate for you it's nothing to be feared, and the side effects (if you have them) can be managed. Someone here is fear-mongering, but it isn't an oncologist.

If you're facing these choices, have courage and don't let yourself be frighted by fear-mongers who won't reveal their background.

By the way, gdp, I'm still not angry. I'm just confronting your misinformation.

Since: Dec 05

Union, NJ

#11 Jul 12, 2008
Gail, I wouldn't mind a real dialog concerning what's wrong with the treatment of cancer patients and what's wrong with the research going on. However, using intimidation tactics to try and suppress real dialog is rather disingenuous.
Gail Perry

Bradenton, FL

#12 Jul 13, 2008
"Gail, I wouldn't mind a real dialog concerning what's wrong with the treatment of cancer patients and what's wrong with the research going on."

That's simply not possible if you won't share what your background is. I agree -- using intimidation tackts and tryin to suppress real dialog is wrong, and you should stop. You should stop giving such powerfully-stated stated opinions unless you're willing to tell use something about YOU, the speaker.

I saw this on a message board for years. Turned out the guy who was trying to tell us that every single thing our doctors did was wrong -- was a janitor. Certainly he's still entitled to his opinion, but when he worked that hard to influence our medical care we were entitled to know something about his background.

By the way, I'm not trying to suppress your information. I'm trying to put it in the larger gramework of who you are.
Gail Perry

Bradenton, FL

#13 Jul 13, 2008
PS: You said, "Gail, I wouldn't mind a real dialog concerning what's wrong with the treatment of cancer patients."

Well, if you really a "real dialog," then that would mean that the other person's view is also welcome, and the truth is that there is a great deal that is RIGHT with the treatment of cancer patients. A "real dialog" would include other people's opinions -- even if their opinion is that they disagree with you on some things. For instance, I do not believe that oncologists are "fear mongering." I actually saw three. My first left to have her baby, and I went to another one, but I also got a second opinion (from someone in anther city and state).

None of them were "fear mongering."

I'll provide the link about the woman dying of breast cancer because she insisted on alternative therapies for her breast cancer. What she's going through right now is far worse than anything chemo and radiation (not the only treatments, folks) bring.
Gail Perry

Bradenton, FL

#14 Jul 13, 2008
Death by cancer treated with alternatives:

http://www.sciencebasedmedicine.org/...

Since: Dec 05

Union, NJ

#15 Jul 13, 2008
To paraphrase Martin Luther King Jr: "A scientific communication should be judged on the quality of its content and only secondarily, or not at all, on the qualifications of its author."
Gail Perry

Bradenton, FL

#16 Jul 13, 2008
Martin Luther King? Being a bit of a student when it comes to MLK, I could not recall any such statement. I have just searched using every variant I could think of and could not find anything remotely resembling that quote. Perhaps you could provide a source? I think that -- by accident, no doubt - you have confused him with someone else.

However, I am asking you about what your background because the quality of your content is so lacking.

You are advising people to avoid chemotherapy. You have been quite assertive on this. You owe it to the people reading here to give us some tiniest of reason why we should give you any credibility at all.

No one would recommend chemotherapy to treat a cold. It is used to treat quite serious illnesses. When the risk from the illness is greater there is greater justification for treatments that have risks as well as benefits.

I will tell people again -- I had chemotherapy. I have also had two other treatments, along with surgery, for breast cancer. That was all for a "first occurrence" and it has not come back.

That was the point of all of that.:)

Since: Dec 05

Union, NJ

#17 Jul 13, 2008
Gail, "paraphrase" represents a dynamic equivalent thereof. It conveys the essential thought expressed in a source text at the expense of literality. The quality of my content speaks for itself. Your accusation that I'm advising people to avoid chemotherapy is once again disingenuous on your part. There is no point in having any dialog with someone who feeds on confrontation.

PFH

Since: May 08

Saint Louis, MO

#18 Jul 14, 2008
Gayle, instead of being so accusatory and aggressive with your replies, consider that there is a slight chance that you do not know it all. I'm sorry, but being a cancer survivor does not qualify you as an expert within the Oncology market. Its one thing to present your ideas and opinions, but to lash out on people as you have done a number of times on these forums borders on silly. At times you seem to thrive on adding minimal value, and maximum confrontation with many (not all) of your posts. Objectivity is a key to understanding the broader world around us, and without it one risks joining the typical under-informed, overly-opinionated citizen that offers little back to those they engage with. Take a breath and try to acknowledge that nearly every issue can be approached from multiple angles.

PFH

Since: May 08

Saint Louis, MO

#19 Jul 14, 2008
I'll apologize before being called out, on the misspelling of your name, Gail.
Gail Perry

Bradenton, FL

#20 Jul 14, 2008
Oh phf I never claimed to know it all, and gdp you I'm sorry but you didn't even come close to expressing Martin Luther King's statements and belief about science. Take a breath yourself, phf, because it seems you can't bear to be disagreed with. By the way, you don't need to apologize for misspelling my name. It's hardly a big deal.

I'm not "feeding on confrontation," gdp. I have disagreed with you. I am as entitled to my opinion as you are.

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