Today the Commissioner of the Food and Drug Administration, Dr. Margaret Hamburg, announced that the FDA is withdrawing approval of Avastin® (bevacizumab) for the treatment of metastatic breast cancer.

This announcement culminates a highly watched process where the FDA determined that although it had granted accelerated approval for the use of this drug in treating breast cancer, subsequent studies did not demonstrate in any group of women that Avastin® actually helped patients in any meaningful way, while causing significant harms-including death.

In the accelerated approval process, the FDA permits a company to market a drug for a specific indication, usually in a life threatening disease, while allowing the company to perform additional trials to confirm the value of the drug. After those trials are done, under this form of approval, the FDA reserves the right to revoke that approval if the original promise of the drug is not confirmed. That is what has happened with Avastin® in breast cancer.

As difficult as this decision has been for the FDA, it is even more difficult for women (and their loved ones and their doctors) who believe that Avastin® has saved their lives. The Commissioner emphasized that she was acutely aware of that concern in making her determination, but she underlined the fact that when the science was carefully reviewed, there was no evidence of meaningful benefit of Avastin® in breast cancer treatment.

The full impact of this decision is difficult to determine at this time. More...

Are we the victims of our own success?

That may be an unusual-and some would say offensive-way to open a discussion of cancer survivorship. I mean it only with the best of intentions, for when it comes to cancer survivorship over the past 40 years, there is much to be grateful for. But that doesn't mean the journey has been without difficulty, and it doesn't mean that there isn't much more to do.

Last week, in Washington, DC, LIVESTRONG brought together over 120 experts on the issues surrounding cancer survivorship to do something reasonable and fairly straightforward: define the essential elements of survivorship that every cancer patient, their loved ones and caregivers should expect once the acute treatment part of their journey has been completed. What's amazing is that no one has been able to do this before.

Having those experts in one room at one place at one time brought into focus the enormous task we face in trying to define those elements, let alone how we configure our systems of care to provide those services in a world where care is becoming more diffuse and resources for anything other than the most necessary care are dwindling on an almost daily basis.

It wasn't always this way. More...

I bet there was a huge collective sigh of relief about the land among men with prostate cancer, their families, their physicians and especially the company involved when the Centers for Medicare and Medicaid Services (CMS)-which runs the Medicare program-announced their decision this afternoon to cover the new cancer immunotherapy treatment for advanced prostate cancer, called Provenge®, under Medicare.

The stakes are huge: I suspect the market (and cost to Medicare) will run into potentially billions of dollars, yet the benefits for all of that money at first glance seem to be modest.

Ordinarily, the outcome in favor of approval would have been as close to certain as possible. 

After all, this new treatment for prostate cancer did increase the survival of men with asymptomatic advanced prostate cancer that no longer responds to hormone treatment.  But the treatment doesn't prevent progression of the disease, there isn't much data to show that men live a better quality of life after receiving Provenge®, and then there is the key statistic: it will cost $93,000 for each treatment-without including the associated costs for doctor visits and everything else that comes along with cancer treatments.

So the specter of the government saying "No more!" to expensive drugs with "limited" benefits has passed for the moment, but I promise the debate is just getting started.  Consider this the preliminary round in a heavyweight match-up between Uncle Sam and the pharmaceutical companies that charge lots of money for their new treatments. More...

Know what a "dilly" is?  The dictionary describes a "dilly" as something that is remarkable or extraordinary, as in size or quality. 

The headline I came across the other day from the Associated Press story is in fact a dilly of a story.  It has some of my colleagues here at the American Cancer Society and our affiliated advocacy organization American Cancer Society Cancer Action Network more than a bit concerned: "NH, RI, NJ Buck Trend, Propose Cigarette Tax Cut."

Hard to believe, but after years of making progress in the fight against big tobacco and helping people to kick the habit or prevent young people from taking up smoking in the first place, now come proposals that would take us backwards, putting more people at risk for their lives all in the name of economic recovery.

Folks, in my humble opinion, this is one screwed-up way for states to make money. More...

An article published this week in the medical journal Cancer Epidemiology, Biomarkers and Prevention and written by my colleagues at the American Cancer Society sends me a message that we can run but we can't hide. 

The topic of the research is the relationship between whether or not a man has adequate (or any) health insurance and how far advanced and aggressive his prostate cancer is at the time of diagnosis. 

The message we seem to be running from is that we continue to bury our heads in the sand at the sad truth that people without adequate health insurance are somehow less worthy of having some decent level of medical care that might save their lives, especially when viewed through the cancer lense.

More...

An article published today in the journal Cancer claims that Medicare “incentivized” urologists to do more surgery in their office, and the net result was a significant increase in medical costs for doing the procedures, compared to doing them in hospital facilities.

But, just as in all research, it’s important to get the data and the facts correct.  And when you do that for this article, you may just not come to the same conclusions.  In fact, the conclusions may be so different that one might ask whether the authors need to go back to the drawing board and update their report.

More...

I find myself early on Sunday morning after the House of Representatives passed landmark health care reform legislation last night asking how I really feel about this momentous event.

The answer is that I actually feel pretty good. And I must admit that surprised me. 

Like you, I have been exposed to many “inputs” that have vied for my attention and have tried to influence my opinions.  I would expect nothing less, especially with something as momentous as health care reform legislation.  After all, this is a bill which inevitably will have a substantial influence on how we receive our medical care, how we provide our medical care, and how we pay for our medical care.

Some of those inputs are “pro,” some are “con” and all try to sway us into their camp as part of the political process.  Some of the sources are “distant,” but some are very “up close and personal.”

I can start in my own family, where our internal discussions about this legislation have given rise to a considerable amount of disagreement. To put it mildly, not everyone in my household thinks this version of health care reform is such a good idea.

I live in an area of the country where opposition to health care reform among physicians and my neighbors and friends runs strong and runs deep. 

I work for an organization that supports health care reform.  I belong to other organizations that have been very vocal in their support of the reform legislation, and others which are equally strident in their opposition. 

I have been glued to my computer, my Blackberry and the various news shows seeking information and opinions on the reform legislation as it moved through the House.   And I haven’t been disappointed with the variety and number of comments that I found through those outlets.

So, with all of that considered--including the personal dilemmas and conflicts--how do I finally come to grips with the realization that this legislation will truly change the landscape in this country for health care for the good and the benefit of many?

On a personal level—as reflected in one of my previous blogs where I wrote about what I wanted from health care reform—I believe this legislation will move us forward to address several of those concerns in a positive way.

I believe that the concepts embodied in this legislation will result in dramatic, beneficial innovations in health insurance and health care that will considerably improve what is now a very dysfunctional system.  I also am of the opinion that this legislation will support “game changing” advances in processes, administrative simplicity, and customer service that we have seen in other industries.  Competition, after all, is usually a good thing.

And then there were the statements of support for the legislation that came from sources that I know and trust.

Obviously, I work for the American Cancer Society.  The board of the Society made a commitment several years ago to make improving access to access to health care the leading nationwide initiative for the organization.  Comprehensive health care reform is a major part of the effort to improve access to care, and the Society's advocacy affiliate the American Cancer Society Cancer Action Network (ACS CAN) has led the charge for reform on behalf of cancer patients and survivors across the country.

Last week, ACS CAN supported this legislation after carefully analyzing what it would mean to people as viewed “though the cancer lens.”  That evaluation showed that there was much in the legislation that met their expectations and our country’s needs when viewed through this prism.  

They weren’t alone.  The AARP, other respected voluntary health organizations, the American Medical Association and numerous medical professional organizations also supported the legislation after their own very detailed examinations led them to conclude that the concepts embodied in this bill were overall good for the country. 

I keep hearing the same thing from every one of them: there is much here that conforms to our policies and our expectations.  Every one concluded that—on balance—the legislation is overwhelmingly more favorable than negative.

There are significant unknowns about the impact of this legislation, as is always the case with something as far-reaching as health care reform.

This is a bill that—if ultimately signed by the President—will be subject to regulatory interpretation.  There will inevitably be “follow-on” legislation over the years to further refine and define what we are trying to accomplish.  And that doesn’t even consider the fact that there is still a long way for this bill to travel before it becomes law, as it moves to the Senate followed by the conference committee followed by reconsideration by the House and the Senate before it is signed by the President.

So now we move on.  We are not finished with this process, and there is probably going to be a considerable amount of discussion and drama as we go to the Senate and the conference committee.

Maybe we are finally on the cusp of making a real difference in the lives of real people.  Maybe we are on the cusp of getting reforms that will work, and which will expand access to health care for people in this country who have no hope today of getting the health care they need.

And just maybe we are on the cusp of fulfilling my own long-held dream of developing a truly American solution to providing adequate, affordable, quality health care to every citizen. 

Let’s hope that in the spirit that has made this country great, we will not lose sight of that very elusive goal. 

Let’s continue to craft that truly American solution, one which will make many of us proud that we worked towards providing an answer to a fundamental need that will improve the health of our nation and benefit us all.

I have a confession to make: I am not a big fan of “gee whiz” medical technology.  At least not until it is proven to really make a difference in the care we provide our patients, or the outcomes of their treatments. 

A study in yesterday’s Journal of the American Medical Association comparing the side effects and outcomes of prostate cancer surgery using the robot to more traditional surgery reinforces that notion. 

Using the robot to treat prostate cancer surgically may be better in some respects, but not better in others.  And maybe not better enough for you to listen to all of the advertising hype about the robot, and forego treatment from a urologic surgeon who in fact may be more skilled at the operation and not use the robot.

The study was reasonably straight forward.  The researchers looked at patient information they obtained from a highly respected national cancer database called SEER and matched those men diagnosed and treated surgically for prostate cancer with another set of data obtained from Medicare fee-for service Part B billing records.

Once they matched the men in both sets of records, they looked at factors related to treatment and outcome, such as how long the men stayed in the hospital and what complications they had over the year following their operation.

Their goal was to evaluate men who had surgical treatment for their prostate cancer one of two ways: with the robot, which is called “minimally invasive radical prostatectomy”, (MIRP) done with instruments passed through small holes and manipulated by a urologist who is sitting at a special machine, compared to men who had their surgery the more traditional way, called “retropubic radical prostatectomy” (RRP) where the surgeon is standing directly by the patient and operating through a more typical (but still fairly small) incision.

Both of these operations remove the cancerous prostate, and--when appropriate—allow the surgeon to remove lymph nodes nearby the prostate.  Both are designed to reduce the risk of impotence, which many years ago was a common problem for men who had prostate cancer surgery before newer types of surgical treatment were developed.

The robotic surgery is very new, and has only been used to any significant degree to treat prostate cancer since the early part of this decade.  But it clearly has caught the attention of the public, and hospitals across the country can’t seem to wait to get their hands on one of these machines and advertise that they are a “robotic center” to accommodate the patient demand.

The problem is that these machines cost millions of dollars, and the disposable equipment sold for each operation has made the company that supplies these machines a heck of a lot of money.  That in turn means more costs for hospitals, health insurance companies, and ultimately the patients.  It also takes longer to do the robotic operation, according to my colleagues who perform this surgery.

So, whether or not these machines are really worth it is a very important question.  Not to mention that the increasing concerns about the value of the PSA test has run head long into the reality that prostate cancer treatment in this country has turned into a huge business for doctors and hospitals—whether or not the treatment is necessary.

(That issue was highlighted recently by a hospital in Philadelphia offering PSA screening to men 35 years and older, despite absolutely no proof that this was of any value to men in this age group. As with most community screening fairs run by hospitals, I suspect that one of the major drivers for that campaign was probably to “feed the beast” rather than offer scientifically valid screening to men at risk.)

So what did the study find?

There has been a huge increase in MIRP from 9.2% of prostate cancer surgeries in 2003 to 43.2% in 2206-2007.  However, if you were poor and/or black or Hispanic and/or less educated, you were less likely to get one of these fancy surgeries. 

You were likely to spend one day less in the hospital with the robot (2 vs. 3 days), less likely to have a blood transfusion after surgery, and more likely to do a bit better with regard to surgical complications post-operatively.   But the authors also suggested that the number of days in the hospital may in fact be similar in high volume hospitals, so whether or not this difference is “real” is not certain.

Another wrinkle to consider in this study was that many of the robotic procedures in this study were performed in Detroit and California, which the authors point out are high volume robotic centers.  This may have contributed to the better outcomes for MIRP, compared to RRP which is done by more surgeons in more locations.  As they say in the weight-loss commercials: “These (robot) results may not represent the typical experience with our product”.  (Detroit, in fact, was one of the “homes” of robotic prostate cancer surgery because of a surgeon there who was nationally renowned for his early work with the robot.)

But the robot did not fare better on every measure.

You were over twice as likely to have a problem with your urinary tract after the robotic surgery, and have a higher risk of urinary incontinence (controlling your urine flow) compared to the non-robotic technique.  Your risk of having impotence after the robot surgery was about one in four, compared to one in five with the more traditional surgery.

Unlike a previous study where the men operated on with the robot were more likely to have an earlier relapse of their prostate cancer and require additional treatment for the spread of prostate cancer compared to men who had traditional surgery, this study showed that both groups did the same.  When it came to the control of prostate cancer, there was no advantage to one type of surgery compared to the other.

So what do you do if you are a man diagnosed with prostate cancer who has made an informed decision to have surgery for your disease?

I guess for some of you the decision will come down to the old adage “you pay your money and you make your choice.”   You may decide that how long you stay in the hospital is more important than the difference in whether or not you can control your urine flow or are able to have sexual relations.

But I think there is a more rational recommendation that actually may surprise you: I suggest you find a surgeon who does either procedure regularly and has done hundreds—if not thousands—of prostate surgeries for cancer.  To me, it is experience that counts not whether the procedure is done with or without the robot.

The bottom line is that you can have a great surgeon who doesn’t use the robot, or a lousy surgeon who uses the robot—and vice versa.  The robot does not make an inexperienced surgeon better.  It’s that simple.

Take a moment to read this information that was contained in the JAMA paper, and read it carefully.  It is very informative and something that every man considering prostate surgery who has succumbed to the advertising and hype surrounding this robotic procedure needs to know:

“For surgeons eager to add robotic-assisted MIRP to their armamentarium, there are few barriers to entry: surgeons must attend a 2-day course before scheduling cases proctored by another surgeon who has performed at least 20 robotic-assisted MIRPs.  Requirements may be less rigorous for attaining hospital privileges for MIRP without robotic assistance*.  Studies estimate the learning curve for either approach is at least 150-250 cases, and greater RRP or MIRP surgical volume is associated with better outcomes.”      

(*Note: That means doing the prostate surgery laparoscopically without using the robot)

I would suggest that if you need to get surgery for your prostate cancer using either type of surgery, you make certain you are not case #21.  You should be at least case #250, and I would prefer to be case #500 or higher. 

Here is what the authors have to say in concluding their report:

“In light of the mixed outcomes associated with MIRP, our finding that men of higher socioeconomic status opted for a high-technology alternative despite insufficient data demonstrating superiority over an established gold standard may be a reflection of a society and health care system armored with new technology that increased direct and indirect health care costs but had yet to uniformly realize marketed or potential benefits during early adoption.”

In other words, many of us buy the hype and forget the reality that just because it looks fancy doesn’t mean it really gives you a better result.  We are medical consumers run amok, dazzled by ads and unsubstantiated claims rather than by science and documented outcomes.  If we see it on TV or a billboard, it must be better.

The science tells me it is the experience of the surgeon that counts, not whether the doctor can play video games. 

So, if you decide to get your prostate taken out because you have cancer, go with a surgeon that has done the surgery lots of times, whether or not they use a robot.  You don't have to be uncomfortable if you want to leave the video games to the kids.

The debate about euthanasia has gone too far.

Someone’s intent to do a good and necessary deed has now been transformed into a hideous misrepresentation that not only affects our humanity and dignity as a nation, but goes to the heart of the physician/patient relationship and the responsibility that physicians have to provide healing and comfort as well as treatment. 

That’s our oath, and that’s what we are supposed to do.  Recognizing that imperative is not something that should be punished as an evil act.

Perhaps some background would be helpful in framing the issue:

Medicare is supposed to only pay for medically necessary and effective care.  It is not allowed to provide other services such as screening or prevention unless specifically authorized by Congress.  End of life counseling falls under the category of non-covered services, but probably gets into the payment mix as part of other billing codes which doctors use to get paid for more routine “evaluation and management” services. 

Providing explicit payment for this service will encourage appropriate and needed discussions between physicians and patients on this very important, difficult and humanitarian topic.

For years, many of us have been concerned about end-of-life issues, such as living wills, pain management and hospice care.  Counseling our patients as they age about their options—and equally important, understanding what our patients’ wishes may be—is an honored part of the physician/patient relationship, especially for primary care internists, family physicians and oncologists.  The reality is that we have not been as successful as we need to be in encouraging these discussions.

We have tried for years to get people to sign living wills and provide durable powers of attorney for health care.  Medical professionals need guidance—preferably in advance of the moment--on what patients want done, either at the time when their lives are coming to an end or when they may not be able to speak for themselves.

There is nothing inhumane or inappropriate about that discussion.  It is a discussion that no one wants to have, and one that is never easy.  But it is the right thing to do, and there are plenty of medical and patient organizations who have devoted considerable effort to encourage these discussions.  There is nothing about the discussion that is preordained to limit care.  In fact, some patients and families want “everything done” even when medical professionals find that directive to be against their own ethical instincts.

I learned these lessons early in my career as a medical oncologist.  Having discussions about end-of-life is an unfortunate reality in cancer care.

What surprised me at the time—when there was less I could do for many patients than is the case today—was the number of patients and families who told me they were more interested in comfort than they were in treatment.  They wanted to be certain someone would be there to care for them through their last days or months and ease their pain and suffering more than they were concerned about getting the next drug which more likely than not would have given them more discomfort that hope and relief from their suffering.

Those discussions had an incredible impact on me as a person and a physician, and the experiences remain with me today.

I didn’t euthanize anyone, and never, never would such a thought enter my mind.  My patients taught me that having a heart beat and being alive to see the sun rise another day was not living and was not life.  That was their decision, not mine.  I would do what they wanted, but almost always what they wanted was care, compassion and relief from pain. That is what we tried to offer.

When I recently heard the gross misrepresentation surrounding the portion of the health care bill that referred to paying health care professionals for these end-of-life discussions, I couldn’t help but be concerned and confused.  When I heard the rhetoric stormed up to a level of “death panels” and “Nazis” I knew we had gone too far.

I have stayed out of the politics of health care reform in these blogs, and will continue to do so.  But as I mentioned in my comments the other day, someone has to be an honest broker of what is going on out there, dealing with some of the rhetoric that is coming from both sides and which is designed to inflame rather than inform.

If you are a physician who has cared for a patient for years or even decades, you know that person as a friend as well as a patient.  Your goal is to provide the best care you can, but also to provide comfort when cure is no longer the goal.  You counsel your patient and their family on what you think the best path may be at that moment and in the future, whether it be treatment or comfort.  You act as protector for their wishes, the guardian of their health, and at the appropriate time the minister for their comfort.

You are not a Nazi.  You are not triaging who will live and who will die.  You are not some thoughtless bureaucrat who is concerned about how much it will cost to keep someone alive.

I have stood in the places of remembrance for people who were killed without cause.  I have cried my tears over those who were lost by senseless murders.  I have read the writings of those who survived.  And I will never forget.

So please do not dehumanize the memories of those who suffered from terminal illnesses or the ravages of age by suggesting that somehow our great country, our great people, and our great physicians and health professionals are somehow going to become agents of the state and in turn agents of death. 

Please understand that dignity in our lives must always be paramount in our thoughts.  Discussing end-of-life wishes is humane and appropriate.  Providing counseling, care, hospice and pain control is in the noblest traditions of our profession and our country.  Listening to our patients and their families is what we do, and what we pledge to do.

Continue with the debate and the discussion, make your case and make your points, but do not dishonor those of us who have tried to do the right thing for our patients, families and friends and the memories of those who have died in peace, honor and dignity by make the choices that were best for them.

I suspect I am one of many who are not unhappy that Congress has finally taken their August recess.  I suspect I am also one of many who are alarmed and upset by the next act in this play, which is the rancor and near-violence we are seeing on our TV sets every day at the various town hall meetings when health care reform is the topic of discussion.

This isn’t what health care reform—or whatever you choose to call it—is supposed to be about.  This is a serious matter for our nation and for many of our fellow citizens. It deserves thoughtful and deliberate discussion.

The events of the past several days have left me distressed and concerned.  The anger, the accusations, the lack of decorum and the distortions and occasional “untruths” being promoted by all sides have left me dismayed.  It is even beginning to affect relationships among friends and families.

All of this has led me to think about what is important to me, and for my family.  What do I really want from health care reform? 

1)      I want to know that I can get health insurance.

Sound simple?  It really isn’t. 

I have been in a medical practice or otherwise employed most of my adult life.  I have always had health insurance for me and my family.  I have had the opportunity to pick my plan, and pay more to my employer and a bit more in co-pays and deductibles so I could get the coverage I wanted. 

But I can not let go of the thought that I am one step away from disaster.

If I had to go out into the private market today, I would have difficulty getting insurance.  Why?  I have a couple of fairly common medical problems.  I am older.  Members of my family also have some medical problems.  I suspect we would be “rated” and pay through the nose if we had to purchase our own insurance, if I could even get it. 

I have “pre-existing conditions” and despite my efforts to take my medications and exercise regularly to keep those chronic conditions under control, there aren’t many companies who would welcome me with open arms.  I am a “high risk”, despite doing what I am supposed to do to avoid a more serious medical problem. 

But what if I had cancer?  What if I had heart disease?  What if I had type 2 insulin dependent diabetes?  Do you honestly think I could get insurance anywhere other than through my employer?  And if I was in a small business—such as a medical practice—can you imagine what my illness would do to the premiums of my company?

We know that these scenarios are not unusual or unique.  Listen to the stories, read the studies, talk to the people who have faced the problems.  These are real issues, and these are everyday occurrences for honest, hard working people that are right there in your community.  They are your neighbors, they may be your friends, and they may be your family.  They are not fictional, and they have a very real interest in the outcome of this debate.

2) I want to be able to afford insurance.  I want the system to be more effective in terms of quality and less expensive (or at least reasonable) in terms of cost.

We are out of control when it comes to spending on health care.  That’s it, plain and simple. 

People who want insurance and need care can’t get it; some people who have insurance want everything.  Doctors say that they have to do all the tests they do because of “defensive medicine,” yet we don’t talk seriously about tort reform.  And even if we had tort reform, I don’t believe that it will resolve the issue of over-ordering tests and procedures. 

Quality of health care is not top of mind for the medical profession in this debate.  We order too many tests and studies too often without evidence that they make much difference.  We can spend thousands of dollars on scans, but can’t afford dollars for vaccinations or “well care.”  We install imaging machines in offices to make more money, because our physician payment system distorts the incentives substantially in favor of doing more tests.

We talk about the “savings” that will come from the widespread use of health information technology, yet we don’t have standards that will allow computers to talk to each other.

We pay lots of money for doctors and hospitals to do things.  We pay a pittance for those who try to prevent disease, and we pay relatively even less to those who are charged with trying to coordinate the complex medical care of seriously ill patients. 

We need to promote preventive medical services, pay adequately for our necessary (and at the very least) basic medical care including primary care, obstetrics/gynecology, and general surgery.  We are losing doctors in these specialties, and it will take decades to replace them.

3) I want to know what I am being charged for when I receive a medical service, what my insurance covers, and what I owe in clear, understandable language. I want to know those fees are reasonable for the service provided.

We are charged substantial fees for some medical services, and as ordinary people we have no idea whether or not that fee is reasonable or the service is appropriate. 

I recently got a bill for the treatment of a member of my family.  Two 1 centimeter superficial lacerations resulted in a $1700 bill, including a remarkable physician charge which was in fact “upcoded” (that means the doctor “coded” for a service that was a higher level code than appropriate for the service that was performed.  I assume it was an “honest” mistake, because if it wasn’t it would be fraudulent).  The skin glue was charged out at about 9 times the purchase cost available to me on the internet.

I get hospital bills that simply say “pay us money”.  No itemized bill. No insurance bill or statement, just pay us the money. 

Patients go to doctors, who look at you sideways if you ask in advance what their charges are for their services.  Keeping their fees secret has been a long tradition among my colleagues, and in private conversations they tell me they should be able to charge whatever they want to.

Some physicians say that we should individually contract or negotiate the costs of our medical care. The man I cared for a couple of weeks ago on an airplane was in no position to negotiate the costs of his care as the emergency medical technicians wheeled him off the plane on his way to the hospital.

Hey, folks, here’s a bulletin: there IS no private market in health care, except for cosmetic and concierge services.  Patients are at an incredible disadvantage in understanding the costs of their services. There is no transparency regarding the costs of medical care and services. The prices are jacked up for those who pay because others can’t—or don’t—pay their bills. 

My personal experience confirms that you have to go to incredible lengths to get answers to even simple questions, and I am considered an expert in this stuff.  If you are an “ordinary patient,” I can’t even begin to imagine how you would understand the charges and the payments.

4) I want to know what treatments and medicines work, what doesn’t work, and if we know whether or not it works.  I want to know that I am getting appropriate, quality care for my medical problem

That is NOT rationing.  It is information.  We need more of it.  We are doing too much of what doesn’t work, too little of what does work, and who knows how much of what may or may not work.

It may be a surprise to some of you, but there are many thoughtful physicians and top-tier medical professional organizations who have been clamoring for this type of research.  I have said this publicly and will say it here: It is time to understand that just because a doctor recommends something, doesn’t mean it works or is the right treatment for you.  But you (and too frequently even your doctor) don’t know that, because the research hasn’t been done. Think about hormone replacement therapy, and you will understand what I am saying.

Here’s another bulletin: In too many circumstances, you have no way of knowing whether or not you are getting quality medical care. 

Too often you as a patient have no way of knowing if you are receiving the right recommendations for your health, whether or not there is a less invasive or less expensive treatment option, or whether the treatment has been shown to effectively treat the condition you have.

The medical profession should embrace quality, quality improvement, transparency, and accountability to demonstrate they are providing the best medical service.  Unfortunately, this has not been exactly at the forefront of the discussion about health system reform.  If it was, I would venture that patients and those who foot the bills for these services would greet the effort enthusiastically and reward health care professionals appropriately.

5) I want confidence that my insurance will be there when I need it for a serious medical illness.

We have too many instances—and too many bankruptcies—where “satisfied” people suddenly found themselves not so “satisfied.”  I am willing to bet that you (and me) have no idea whether or not your insurance will be a facilitator or a barrier to your care if you or someone you love becomes seriously ill with a disease like cancer.  You just don’t know. 

So don’t stand there and rail against your Congressman or Senator because you are “happy” with your health insurance.  I wonder how many of you have had a serious, prolonged illness in your family.  If your experiences have been positive, terrific.  But don’t discount that many others have not been so fortunate.

I am looking for someone who is a “trusted voice” or “honest broker” who can bring this discussion and debate about health care reform back to the center, who can tell us what is in the bills and what is not.  Too many lies, too many untruths and too many distortions have me feeling there is no such voice being heard in the land today.

Then there is the question of what we are really talking about anyway.  There isn’t one bill about health care reform; there are several.  And there is one that hasn’t even made it to the public.  (I find myself hoping against hope that those six senators will have the wisdom to get this close to “right” so we can have something that will ignite the passion of those of us who want something done, yet want it done with balance and the participation of both sides of the aisle.)

When this discussion started several years ago, the American Cancer Society had four principles that were core to the Society’s efforts surrounding health care reform.  On reflection, those four principles articulated at that time are consistent with what many of us want today: 

• Adequate—Timely access to the full range of evidence-based health care, including prevention and early detection.
• Affordable—Costs are based on the person’s ability to pay.
• Available—Coverage is available regardless of health status or prior claims.
• Administratively simple—Processes are easy to understand and navigate.

Aren’t those principles what this is all about?  Can’t we focus on those principles and move this process forward?  Is it really that difficult to get this done?

We need some sanity in this discussion.  We need to think as individuals, communities and as a nation about what is important to us when it comes to health care reform and our health care in general.

I suspect there is a sense in the country that many of us are willing to “pitch in” if everyone pitches in.  This shouldn’t be about us against them.  This shouldn’t be about “I’ve got mine and you can go to h---.”  We are better than that as people and as a nation.

It’s time our public discourse and our political/legislative process should reflect the best of what we are as a nation.  We need to get this done.