What I wish I knew about Multiple Myeloma treatments 25 years later...

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Evidence-based Medicine and the Multiple Myeloma Patient

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“In medicine, the term “evidence-based” causes more arguments than you might expect…Everyone is a bit right here, and everyone is a bit wrong… It’s the old guard versus the new. It’s the patient versus the system. It’s freedom versus rationing.”

In the article linked and excerpted below, writes an excellent broad brushstroke article about the term evidence-based medicine. It took me years to understand that the oncologist treating my multiple myeloma (MM) was making medical decisions based on his limited view of what the Food and Drug Administration considers “evidence-based medicine.”

In Dr. Berger’s defense, in the United States, board certified M.D.’s can prescribe only those therapies approved by the FDA. FDA approval also applies to off-label medicine. I’ve never understood how and why the FDA can be strict with the application of say, cytoxan, yet allow any board certified physician to prescribe cytoxan for almost any application he/she thinks is necessary.

As Dr. Carroll points out, there are strengths and weaknesses of evidence-based medicine, especially in conventional oncology.

My favorite example, where my own MM therapy is concerned involved my main therapy. At the time, 1995, an autologous stem cell transplant was considered “experiemental.” This therapy did little for me. I then underwent another “experimental” therapy that put me into complete remission after 17 months. My health insurance paid for the experimental therapy prescribed by my board certified M.D.’s. My health insurance denied the life-saving therapy prescribed by the controversial M.D., Stanislaw Burzynski M.D. PhD.

Since my original cancer diagnosis in early 1994, I have come to the conclusion that oncology relies exclusively on the Food and Drug Administration (FDA) to decide what is and what is not evidence-based medicine. While I understand the need for the FDA I can’t help but think that Dr. Berger was limited in his treatment decisions as a result of clinical oncology’s strict adherence to FDA standards.

Conventional oncology resulted in my oncologist telling me “there is nothing more we can do for you.” Evidence-based but non-conventional therapy led to complete remission from my end-stage cancer…in 1999 where I have remained since.

Please don’t misunderstand me. I work at staying cancer-free. But I do so with the help of evidence-based therapies such as nutrition, supplementation, exercise, mind-body, and lifestyle therapies. Evidence-based but non-conventional or FDA approved therapies.  My definition of evidence-based, not Dr. Berger’s.

The six bullet points below summarize what I believe are basic bias’ of evidence-based medicine (EBM).

  • Most published research has had minimal patient input
  • EBM’s hierarchy of evidence devalues the individual patient experience
  • EBM conflates patient-centredness with use of shared decision-making tools
  • Power imbalances can suppress the patient’s voice
  • EBM over-emphasises the clinical consultation
  • EBM is concerned mainly with people who seek care

Understanding that conventional oncology is limited to its application of EBM, when I launched PeopleBeatingCancer.org, I decided to apply a broader, more patient-focused use of EBM. My personal cancer experiences combined with research of thousands of cancer patients and survivors forced me to bring a wider array of therapies to people who come to PeopleBeatingCancer day in and day out.

Each and every blog post I write contains both my own patient experience when applicable as well as research, articles, and meta-analyses linked in an effort to educate the reader.

Thank you,

David Emerson

  • Cancer Survivor
  • Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:


What We Mean When We Say Evidence-Based Medicine

“In medicine, the term “evidence-based” causes more arguments than you might expect…

The mission of “evidence-based medicine” is surprisingly recent. Before its arrival, much of medicine was based on clinical experience. Doctors tried to figure out what worked by trial and error, and they passed their knowledge along to those who trained under them…

Many were first introduced to evidence-based medicine through David Sackett’s handbook, first published in 1997. The book taught me how to use test characteristics, like sensitivity and specificity, to interpret medical tests. It taught me how to understand absolute risk versus relative risk. It taught me the proper ways to use statistics in diagnosis and treatment, and in weighing benefits and harms.

It also firmly established in my mind the importance of randomized controlled trials, and the great potential for meta-analyses, which group individual trials for greater impact. This influence is apparent in what I write for The Upshot

Many of its supporters say that using evidence-based medicine can address the problems of cost, quality and access that bedevil the health care system…

Critics of evidence-based medicine, many of them from within the practice of medicine, point to the weak evidence behind many guidelines…

Some of these critics (as well as many readers who comment on my articles) worry that guidelines line the pockets of pharmaceutical companies and radiologists by demanding more drugs and more scans. Others worry that evidence-based medicine makes it harder to get insurance companies to pay for needed care. Insurance companies worry that evidence-based recommendations put them on the hook for treatment with minimal proven value.

Everyone is a bit right here, and everyone is a bit wrong. This battle isn’t new; it has been going on for some time. It’s the old guard versus the new. It’s the patient versus the system. It’s freedom versus rationing. It’s even the individual physician versus the proclamations of a specialized elite…

The benefits of evidence-based medicine, when properly applied, are obvious…When evidence-based medicine is not properly applied, though, it not only undermines its reasons for existence, but it also can lead to harm…

All research is not the same. A hierarchy of quality exists, and we have to be sure not to overreach…

Too many articles, studies, and announcements are quick to point out that something or other has been proved to be dangerous to our health, without a good explanation of the magnitude of that risk, or what we might reasonably do about it…

If evidenced-based medicine is to live up to its potential, it seems the focus should be on that side of the equation as well, instead of taking best guesses and calling them evidence-based. This, probably more than anything else, has made the term so widely mistrusted.”

 

 

 

 

 

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