THE BLOG

Nothing NICE About ICER

This post was published on the now-closed HuffPost Contributor platform. Contributors control their own work and posted freely to our site. If you need to flag this entry as abusive, send us an email.

The Institute for Clinical and Economic Review (ICER) is emerging as a major player in the health care cost debate. The organization through its affiliates is holding public meetings focusing on specific diseases and outlining their model of controlling costs, providing value and what the "best" treatment will be for patients.

When I read their website, however, I was shocked to discover how ICER tries to portray itself to the world as a fair arbiter of controlling cost, providing value and deciding the best treatment.

First, let's look at their independence claim.

At the end of its website article titled "ICER Opens National Call for Proposed Improvements to its Value Assessment Framework," it says "the Institute for Clinical and Economic Review (ICER) is an independent (emphasis added) non-profit research institute that produces reports analyzing the evidence on the effectiveness and value of drugs and other medical services."

Dr. Steve Pearson, who heads the nonprofit, says ICER tries to be transparent and "whenever an independent entity takes a hard look at data, there's going to be tension."

When ICER was launched, Dr. Steve Miller from the pharmacy benefit manger Express Scripts said "ICER's new program will make a huge difference by providing what is sorely needed: an independent, trusted (emphasis added) source of information about new drugs".

But, as described in the section titled "ICER Value Assessment Framework,"

"ICER led an initiative to develop a conceptual framework which insurers (emphasis added) can apply to guide their assessment of the value of medical services including drugs, medical services and procedures."

Why develop a framework to directly help insurance companies and not patients? One clue is to examine the composition of the ICER Governance Board.

Its members include representatives from America's Health Insurance Plans (the insurance companies' lobbying arm), Kaiser Permanente, UnitedHealth Group, Blue Shield of California and the Blue Shield Foundation. The others are Big Data acolytes who value the group over the individual.

So, insurance companies comprise a majority of a not for profit board that directly states it is in the healthcare game to help insurers. As to why no patients -- the ultimate "consumers" of care -- are on the Governance Board, it is an ongoing story where insurance companies and medical bureaucrats want our premiums, copays, coinsurance and taxes, but not any wisdom and expertise we developed in our time as patients.

Second, they play the usual word games that seek to confuse and obfuscate.

They highlight "Choosing Wisely," an initiative of the American Board of Internal Medicine (ABIM) -- which certifies that doctors have met nationally recognized standards -- and "Proven Best Choices," a program developed by ICER and board member Families USA, which works to ensure "health systems meet best practices for delivering high-quality care that is cost-effective and benefits patients."

"Choosing Wisely" (who can object to wisdom?) seeks to pressure patients into believing that they are overusing medical resources, a theory which this study debunked. Until its recent scandal involving its foundation is completely resolved, the American Board of Internal Medicine is probably not an organization that I would cite as an authority on acting "wisely" as it relates to finances.

"Proven Best Choices" (who can argue with proven and best solutions?) attempts to examine "how well one option works compared to others based on scientific evidence" and "how much one option costs in relation to its benefits. But "scientific evidence" is only valid for looking at an entire group of patients and making a generic diagnosis. It ignores the development of precision medicine as promoted by the current administration and the genomic differences of patients as it relates to progression of a disease, its initial treatments and maintenance care.

There is both an art and science to medical care as practiced by our doctors in the office and at our bedside. They should be making all healthcare decisions to try to meet patient goals, not the goals of an anonymous and far removed Masters of Public Health. Their Big Data may get us into the ballpark, but a caring physician gets us to the right seat.

And how does ICER's insurance industry dominated board try to define value and benefits?

On its "ICER Opens National Call for Proposed Improvements to its Value Assessment Framework") page, it cites as one of its highest priorities the use of "incremental cost effectiveness ratios: appropriate thresholds, best practices in capturing health outcomes through the QALY or other measures. QALY (quality adjusted life years) is used by the National Institute for Health and Care Excellence in the United Kingdom to basically ration expected results from treatments based on averages (which as I have stated before, we patients are not averages) .

I have a personal reason to abhor any cost-effectiveness program in the United States that proposes using QALY as a standard for care.

In 2009 I was diagnosed with multiple myeloma. At the time that I was treated, most multiple myeloma patients were dying in one to three years. In the United Kingdom -- the home of QALY based care -- my novel treatment protocol had not yet been approved under their national health plan due to cost concerns and the statistical likelihood of its limited extension of a patient's life. If these rules had been in effect in the United States in early 2009, I probably would not have survived -- and those that endorsed these theories would have surely been complicit in my premature death from cancer.

Despite this extremely successful course of treatment, some medical bureaucrats seem to think that I am an outlier -- a mere statistical oddity who was not economically worthy of receiving treatment. If these soulless administrators get their way and QALY restrictions become the accepted method of dispensing care in the United States, it will cause thousands of people like me with life-threatening but treatable illnesses to be denied medically justifiable care and could thwart the continuous innovation process that leads to the development of new and better medications in the future.

And "benefits" to a patient may include non-economic items such as living long enough to see lifecycle events -- marriages, births, graduations and weddings, those moments that make life worth living in the first place. sadly, these unquantifiable experiences have no place in the value calculations done by those that rely on spreadsheets, apps or an abacus to apportion care.

I was unable to attend the ICER session on myeloma held in St. Louis and will probably will not be able to attend any of the other public hearings that are being held, but I can summarize my opinion of their organization as it relates to patient access and choice in treatments in only four words:

Shut it down now!