The Blog

I Can't Wait to Be Average

We patients are not averages, we are human beings. We respond differently to diseases, treatment and their aftereffects, including possible relapses.
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.

Who wakes up every day and says "I can't wait to be average!"? No one in the medical profession should, but that is exactly what will happen if Dr. Peter Bach and those who think like him get their way.

His recent New York Times piece and similar articles on the "unsustainable" cost of health care repeatedly mention that patients given a novel therapy "only" live on average a few months longer, so this treatment is not appropriate and access to it should be denied. It is a shame that he and some other like-minded medical professionals at Memorial Sloan-Kettering Hospital continue to spread economically baseless stories like these that scare patients, considering their hospital's recent ad campaign slogan is "more science, less fear."

This view that practicing medicine based on existing averages or expecting an individual patient's response to treatment to align closely with these averages is absurd. We patients are not averages, we are human beings. We respond differently to diseases, treatment and their aftereffects, including possible relapses. Advances in knowledge gleaned from the field of genomics have shown that responses to potential cures differ with each patient and with each disease, necessitating a more individualized or targeted therapy approach on behalf of each patient undergoing treatment.

In practicing medicine to a mean based on data points, we deny the fact that positive outliers can exist. Each point on a graph, each number on a spreadsheet is a human being hoping to live longer or to be cured, not an amorphous inkblot or pixel to be analyzed by a soulless bureaucrat. To advance medical care, we should spend more time determining why the outlier occurred and attempt to replicate it for the good of all patients.

This cost-based line of reasoning would have harmed me when I was diagnosed with multiple myeloma in March of 2009. At the time I was deemed a high risk patient with an estimated survival of only one to three years. It is now almost six years later and I am still here -- teaching, working out and paying the taxes, insurance premiums and copays that support our medical system. In October, my oncologist informed me that I am as close to being cured of a chronic disease that one only hopes to manage as he has seen in his entire career.

At the time that I was diagnosed, this prognosis of "only one to three years" of life would have caused those like Dr. Bach who have a solitary mind numbing cost containment focus to declare that the spending of resources on my care was inappropriate, unnecessary and wasteful. Under NHS, the British national health care system, which operates in a fashion that administrators like Dr. Bach wish they could replicate here in the United States, I would have been denied access to the novel pill-based regimen that saved my life due to cost concerns and an aberrant focus on QALY (Quality Adjusted Life Years), an analysis that bases care provided on average or expected extension of lifespan and its yearly price. My cost of treatment related to my expected time of survival would have doomed me.

If I had been forced into accepting the prognosis of a medical professional more interested in wearing a green eye shade than a doctor's white coat I would not be alive today.

This cost-based line of reasoning would have also left hundreds of thousands of HIV/AIDS patients in the past thirty years to fend for themselves with little access to care. The prevailing economic wisdom in the late 1980s was that the costs of treating these patients would soon overwhelm the entire health care system and bankrupt society. Scientific advances proved them wrong then, have proved them wrong in other instances in the past, and will prove today's naysayers wrong again in the future.

These medical administrators also want us to supposedly save costs by using older or existing methods of treatment and will only allow access to newer treatments once the original method is shown not to work. The "old" drug regimen that has traditionally been used may be an adequate treatment for a majority of patients, but not for all patients. Besides offering hope and promise for future patients, the innovative therapy may even provide better results right now. These restrictive "fail first" programs truly fail those with aggressive cancers that could be treated with cutting edge regimens -- they die much sooner than they should!

Insurance companies and their lobbyists also want us to go to hospitals for intravenous treatments as opposed to having the ability to access pill-based regimens that can be taken at home. My pill-based care and those of other cancer patients dramatically reduce hospitalization stay expenditures and also allow us to avoid time and costs of traveling to the hospital, avoid having needles jammed in our arms on a regular basis and enable us (and our caregivers!) to have more time to work. The implementation of "oral parity" in insurance coverage would encourage access and choice in care, save costs and produce quality results for the chronic patient.

As a society and as individual patients, we want and need all parts of the health care system to be innovative, working together to create more success stories that beat the averages, not merely meet the existing averages. We want to raise the bar, raise that average expected life span, not just to help the patient today but to meet the needs and goals of future patients with the same disease.

With each attempt to develop novel therapies we may "only" increase lifespan by a few months or a year today. But, through scientific inquiry and continuous innovation, patients will soon live three to five years longer, then ten years longer -- and who knows, perhaps a cure for that disease will be found.

In the process, the exceptional result today will become the new norm in medical care tomorrow.