Saturday, January 1, 2011

Linde's Cancer

I read the following article in Bloomberg online and as there was an address to write to I took them up on their offer. I laid out as starkly as I cloud a bleak vision for the future, not least because I read that health insurance profits are up 41% in 2010 and now there are 50 million Americans with no insurance coverage. Below the picture of George Santayana's famous dictum, photographed at Auschwitz I herewith append the original column and my e-mail correspondence with the author. I doubt I made a difference but I would like to go on record as having said something as we slip toward the abyss.

In July 2008, my wife Linde was diagnosed with advanced squamous cell carcinoma of the oral cavity. Her subsequent treatment has led me to view U.S. medical care from a different perspective. What Linde and I have learned over the past two years has broadened my fundamental beliefs about medicine. In sum, while amazing advances have been made and miracles are occurring, medicine remains very much an art.

I’ve spent almost 40 years on the business side of the health-care industry, including the last seven as chief executive officer of a health plan. I believed my network of contacts would serve us well. I presumed there were unambiguous answers to questions about the best treatment plan and the best providers.

What I learned was that for uncommon diseases like Linde’s, if not all diseases generally, clear answers often don’t exist. I will never forget one doctor telling me that the information I sought wasn’t available and that I would have to trust my gut. This is pretty incredible when you think about how much as a society we spend on health care.

The new federal health-care reform law promotes the adoption of health-information technology and supports comparative effectiveness research to understand the marginal contributions of new drugs, devices and procedures. But what we learned with Linde’s treatment is that data on innovations, especially for less common diseases, isn’t sufficient to broadly create evidence-based medicine.

Risk Adjustments

Often medical research, even when coordinated and summed across the industry, doesn’t have enough patients suffering with a particular disease to test alternative treatments using scientific -- trial and error -- methods. I can’t tell you how many times I heard from physicians that every patient is different.

The same deficiency exists for assessing a practitioner’s expertise with a particular treatment for a disease. To evaluate a doctor or treatment, it’s necessary to risk adjust for differences in patients. Generally, it’s more challenging to care for an older patient than a younger one. Similarly, treating patients with diabetes is more difficult than those without. There are myriad risk factors and standardizing for them is difficult if not impossible.

This has implications for what we consider the best places to receive care and how doctor performance should be reported. We really don’t want clinicians to avoid riskier cases to achieve better grades.

Work in Progress

In the face of these limitations, clinicians often rely on their understanding of underlying disease processes to decide the best course of action. Leading medical organizations convene panels of experts to provide opinions about the most effective approach for diagnosis and treatment. The work of these panels is important, but sometimes their opinions are later found to be wrong.

The recently developed human genome provides promise for gaining disease process insight, but it’s a work in progress.

Bottom line, there isn’t as much hard science as one would like.

So, what do we do? I wish there was an answer that offered real value. After all, I’m a business executive who runs a health plan providing benefits to thousands of employers. I’m also a taxpayer who supports government programs. Unfortunately, there are no such assurances, but there are steps we can take.

Best Course

As a society, we need to be honest about treatment limitations. Patients should be well informed about what the industry knows and doesn’t know. There should be candor about the likelihood that care will make them worse instead of better. Patients should be empowered to be the treatment decision makers.

In recognition of the uncertainty patients face, we need to compassionately acknowledge their pain and fear. We need to counsel that aggressive intervention isn’t always the best course of action.

I share these conclusions not to suggest dissatisfaction; Linde and I are grateful for her care. Her clinicians included the country’s most respected doctors who did what they were trained to do -- aggressively seek a cure.

Rather, these observations are offered to challenge the U.S. health-care industry to be more explicit about medical treatment being as much an art as a science and to provide emotional and spiritual support to improve patient and caregiver experience.

Course of Disease

There may be an economic benefit to this. As patients learn more about the limits of medicine, some may choose less intensive and costly care. As a nation, our health-care spending increases as patients near the end of life.

Since its onset, Linde’s cancer has come back twice. The first time, she continued a courageous and valiant fight. The second time, she learned that further treatment would be painful, risky and probably leave her partially disabled and deformed. She was further told that the likelihood of having an extended, high quality life was remote.

With this knowledge, she opted for palliative care favoring quality of life over extending life. My acceptance of her decision, while difficult, was the best way I could show my love and support.

Linde commends her clinicians for being great teachers. They were candid, patient, used non-clinical terms, and shared their uncertainty about the effectiveness of suggested treatment. Their support of her as the decision maker was wonderful.

Linde and I have opted to share our journey because we hope the understanding of medicine we have developed will be helpful to others.

(David H. Klein is president and chief executive officer of Excellus BlueCross BlueShield in Rochester, New York. The opinions expressed are his own.)

To contact the writer of this column: David H. Klein at

To contact the editor responsible for this column: James Greiff at

Just curious: did you deny yourself coverage at all? Reject any bills? Refuse treatment as too expensive? Require endless reams of paperwork? Any pre-existing conditions? Did your application include any mistakes or errors that canceled coverage? Did you receive any medical bills with no explanations of benfits long after treatment was delivered that your insurance company (you yourself) rejected out of hand?
As you might imagine my wife has a "condition." We have suffered all of the above and we reject private health insurance as ineffiicent cruel and wasteful.
And downright irritating.


Subject: Re: Re Linde's Cancer
Dear Michael,

Thank you for your email. I'm sorry for the negative experience you've had with your health insurance company.

In order to better understand our members' customer experience, I asked that my wife's claims be processed the same way everyone's are. In thirty months and nearly $700,000 worth of care, she's had only one denial which was appropriately made (for an out of network procured durable medical equipment device).

I believe my experience with my company is very typical. Our plan is perennially highly rated.

As an aside, even if I didn't ask for special treatment, I would need to be careful about any self-dealing behavior. Because of regulatory and IRS personal inurement issues, 100% of my claims are audited.

Back to the company, Excellus BCBS prides itself in taking care of our communities. Our costs are 80% of the national average. We use pure community rating for individual and small group. We guarantee issue and have no pre-existing condition exclusions. We have voluntary external review (patient bill of rights) well before state law required.

We have an uninsured rate of less than 10%, administrative costs plus profit of 11% and high share/high provider/high customer satisfaction.

We're champions of not-for-profit health care/health insurance.

We support health planning, workforce development and community health initiatives. These initiatives have recently included promotion of generic drugs, electronic health information exchanges and appropriate end of life care.

We also heavily involve practicing physicians in setting medical policy. This leads to better decision and frankly earlier acceptance.

I'm sure we're not getting it completely right, but we are certainly trying.

I understand that all of my brethren plans don't behave quite the same way we do. I'm not offering any excuse for them. Rather, I'm suggesting that there is clearly an option other than government.

Again, thank you for reaching out.

David H. Klein
President and CEO
Excellus BlueCross BlueShield
165 Court Street
Rochester, New York 14647

Thank you for taking the time to reply.

I grew up with single payer and now I wish I had emigrated to a place that still has it, Australia oir New Zealand. My wife and I have no children which is good for us but to live in a wealthy country with more than 50 million uninsured, many of whom are children is a disgrace and no one in power seems to give a damn.
I read this in Huffington Post, in an article discussing the fact that our uninsured population is larger than the entire population of Spain:

"As the Great Recession has sown unemployment and downgraded work even for those people who have held on to their jobs, the number of Americans lacking healthcare has swelled beyond 50 million, according to a sobering new report from the Kaiser Foundation.
Among the report's most troubling findings: The number of Americans without any health care coverage grew by more than four million in 2009. That left almost one-fifth of non-elderly people uninsured. Among those between 19 and 29 years old, nearly one-third lacked coverage.
The study underscores the degree to which the recession has accelerated the loss of basic elements once viewed as inextricable pieces of a middle class life. The number of Americans lacking medical coverage now exceeds the population of Spain.
Nearly all Americans over 65 are insured by Medicare, the government-run health care plan, but those beneath that age are increasingly vulnerable to losing health care once provided by their employers or finding themselves unable to afford private coverage, according to the report, "The Uninsured: A Primer."
As those lacking health insurance grow in number, so do those missing out on necessary medical attention. About one-in-four uninsured adults have forgone care in the past year because of costs, compared to only 4 percent of those who have private coverage, according to the report."

You'd think we could do better.


Subject: RE: Re Linde's Cancer
Date: Tue, 28 Dec 2010 13:57:14 -0500

The various SCHIP programs have had a significant impact in reducing for documented low income families children not having health insurance. With the recently enacted federal reform, adult uninsured rates will also drop. The problem the country is facing is cost and the Legislation did little to address that problem. Indeed, some argue that the law has aggravated the problem.

The issue with cross national comparisons is a significant one. It's very difficult to reconcile differing cultures, starting points, macroeconomy, scale and diversity.

Nowhere else looks like us. We will need to forge a uniquely American solution.

This will be a daunting challenge given our political system

However, I remain optimistic.

Take care.

David H. Klein

I have never had the opportunity to write directly to the head of a health insurance organization so if this letter is taking the debate one step too far forgive me and I guess we will meet on the barricades where I hope we will have ample time to talk before they string you or me to the lamp post.

The problems with health insurance are easily solved (just like the Middle Eastern endless war) with compromise. Insurers accept regulation and fewer profits, but profits nonetheless, and patients accept a lower, but not bad, standard of care- fixed pensions for medical mistakes, compassionate but not intrusive end of life care- what the Tea Party nutters call death panels- and so forth. We get treatment without paperwork and doctors get to practice their trade without seeking bureaucratic permission first. And we all of us accept death and dismemberment as realities alongside the realities of paying for care. All government has to do is oversee the fairness of the system, much as they do in Germany.

However in a country where the paradigm is slipping and more and more people are without coverage and profits in the insurance industry are skyrocketing such notions seem quaint at best. You and I both know insurers seek to deny claims all the time on spurious grounds. the law may soon prohibit that, but without vigorous enforcement nothing will change. I am sure you know how many meat packing inspectors the Department of Agriculture doesn't have to oversee the brutal mid Western slaughterhouses that feed us our fattening and salmonella laden burgers. In the current political environment (supported by the masses amusingly enough) regulation and big government are catch phrases that give corporations free reign.

It has been my contention for some time that the social contract in the US has been broken. Over the past several decades our corporate and political leaders have been nibbling at the edges of the New Deal and the Great Society reforms and the more they nibbled the less resistance they found. The destruction of the social safety net is in full swing now because globalization and the off shoring of work (12 million Americans now work in manufacturing and God knows how old that statistic really is) has been enthusiastically supported by the voters. Now the people in charge (your bosses) have no need for us the workers therefore there is no need to provide anything as basic as health care, never mind a job. Until our economy finishes imploding and our wage aspirations don't mirror those of an Indonesian peasant our country will continue to spiral downhill. Writing as one who has traveled I know what a gulf separates a peasant from the owner of the wealth. I see it coming here too.

The other scenario is the rise of the Tea Party. Clearly neither Democrats nor Republicans will change the plot. They won't bite the hand that feeds their political ambitions so at the 2012 election the Republicans will be as discredited as the Democrats are now (deservedly) as the economy will not be revived by tax cuts. History show demagoguery is the next step and those of us that take Santayana's dictum at face value know that no one pays attention to history any more. I suggest to you that the people in charge are as disconnected from people's real pain as Marie Antoinette was said to be. After all when your company denied Linde one claim what did you do? Write a check or did you declare bankruptcy after holding a bake sale? Thats what the workers have to do. Even I who have kept up health insurance coverage all my life with few claims, know that my future is one of no assurance- my pensions are on the line, my insurance through my city job will cost me evermore and cover ever less. I have been a cautious investor planning for retirement and the bank crash has been the tool to wreck it all. Not my recklessness funnily enough.

I wish to God I had emigrated somewhere else 30 years ago but I made my bed and must lie on it for I am too old to move again. Old age in a social democracy would have been nice but I didn't act when I had the chance. Paradoxically I wish I were older because I have no desire to live through what my parents lived through in the misery of the early twentieth century. I had hoped Obama was FDR, but he turned out to be Herbert Hoover and it seems the die is now cast, as I see no other pretender to FDR's legacy stepping up to save us.

When my wife's rheumatoid arthritis drugs are denied on the grounds of expense what do you suggest I do? I see the day coming and it fills me with dread.


1 comment:

Danette said...

Just now had a chance to read this entire post. I'm glad you had a chance to write him however futile it might have been. I don't know if you saw my post in November thanking my doctor for helping me with my migraines but since that time I've had a relapse. Not a serious one but I did have to buy more migraine meds again. It has caused me to wonder if I will once again wind up with migraines 2-3 times a week and if so, how will I afford the meds when they are $45 for 4 pills? (and I was taking 3 pills per migraine) Plus my insurance company would not cover it if I needed them more often than they would approve, which was once every 6 days or something like that. And what happens in another year when they decide to charge more and give me fewer pills? I was upset when I went to pay for my rather expensive pills and said something to the Pharmacist assistant about how much I hated my insurance company (I now have United Health Care) Her response? "They're all bad. They're all bad and they rule the world." This from the person who deals with them the most.

I'm still hoping Dr. Moon has solved my the worst of my migraine problem but I fear the worst...