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Days of Miracle and Wonder in Patient Power

Patients like me was listed as one of the websites allowing patients to run informal trials on treatments (awesome to see the power of this site recognized!).  On the plus side, it is incredibly empowering.  However, the flip side is patients in clinical trials may use sites like this one to figure out they are in a control group and modify their treatment or drop out of the trial.  After all, who would willingly let their condition progress for the sake of a trial’s control group numbers?

An additional advantage of this spread of social networks tracking medical treatments and conditions is the earlier release of at least anecdotal evidence from those in the trials who are publicly tracking their condition.  I think of the information from posters on patientslikeme.com talking about Campath before the trials’ results were published.  By the time of publication, many following the patients in the trials had a good feel for the likely results.  Patientslikeme vastly shortened the dissemination time for results.  This model has the potential to drastically shorten the time between discovery of treatments and their use amongst the patient population.

The question which remains is what to do with the danger resulting from the removal of survey/testing methodology.  Will most patients understand the implications of non-response?  What does it mean when 20 people post about starting a therapy and only 2 or 3 chart it for years?  Did the others stop and why?  Are the two people in remission a sign the treatment could work, or is 10% the number of people likely to have a spontaneous remission without treatment?

How many of us will know enough to ask these questions before we ask for the treatment based on what we read?  We patients and our loved ones are desperate.

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Potential upticks in patient power have been happening across many fronts.  Last month I ran across a story from the U.K. where there was a proposal for drug companies to compensate patients if their treatments failed. http://multiple-sclerosis-research.blogspot.com/2014/06/will-pharma-compensate-if-their-drugs.html

On the idea of repayment if a drug fails, I think there are numerous issues with this in MS. How will we measure failure: new lesions, brain shrinkage, worsened quality of life, greater effective disability score, etc.? I ask this in all seriousness as I work with Patientslikeme.com to develop better measures for patients for tracking disease progression across a variety of medical conditions. We run into problems trying to develop questions and measures to accurately assess health versus illness.  Until we can define success and failure, I do not know how we could punish/fine/sue those who make an ineffective treatment.  This completely ignores the possible disincentive to create new treatments.

I saw this study a while back on cost effectiveness of DMTs in the United States (http://www.ncbi.nlm.nih.gov/pubmed/21775734), and the conclusion was DMTs in the U.S. are not cost effective by normal measures applied to our treatment of other chronic conditions. However, if we could get them marked down 2/3 to the cost level seen in the U.K. then the costs come in line with other chronic health condition treatments.  The temptation would be for all the patients who feel their drug is not working to seek repayment, and I can see and understand patients desire for “justice” in this as a way to bring the costs down.  However, we simply do not have the means to measure success, and attempts to punish “failures” could lead to worse outcomes for patients as a population.  .

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While I understand the frustration and annoyance with the pace of progress getting new treatments to patients, I think we patients need to be cautious in our use of our new market power.  While we have the ability to disseminate news and organize like never before, we need to be aware of the limits of our imperfect knowledge.  Perhaps the hardest part of this increase in patient power will be the self control to step back and look at progress from beyond just our personal benefit angle.  In research, a negative result is informative.  For an individual, a negative result can seem and even be, terrible.  To be successful, patient oriented research may require a selfless motivation foreign to most economic theory.

Indeed, “these are the days of miracle and wonder” when it comes to patient knowledge and power to effect change.  However, there may still be long distance charges to find and spread “truth.”

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Dangerous Knowledge

Mama-no-fun and I chilling on the couch.  She hates cameras and seems to know when the phone is about to be used as one.
Mama-no-fun and I chilling on the couch. She hates cameras and seems to know when the phone is about to be used as one.

Problem: We Have the Answer

Throughout the centuries, there have been various attempts to ban knowledge thought to be dangerous, but I posit the most truly dangerous knowledge is that which we stop questioning. The knowledge our experience reenforces is extremely hard to replace. Compare this with knowledge gained by efforts to prevent exposure to opposite views.

The Catholic Church had the Index Librum Prohibitorum, a list of works deemed heretical until 1966 when the pope abolished it. Still, subsequent Church leaders and an eventual pope remind us of the moral obligation to avoid books thought dangerous to our faith and morals. I have to admit I have looked at the list to try to find interesting reading in my contrary teenage years. Truth told, I was already familiar with many of the authors like Galileo, Darwin, Voltaire, etc., and I think my education better for my exposure to their work. Lest one think this desire to repress thoughts and literature are a Catholic thing, I note the more modern Satanic Verses which lead to a fatwa issued against Salmon Rushdie in 1989. I read the book solely to see what thoughts could merit death threats. Attempts to repress knowledge almost always seem to have the opposite effect. We all want to know who is the man behind the curtain.

However, there seems to be an ironic flip side. We seem to have an extremely hard time questioning “truths” which have seemed confirmed by experience. I was reading this week about chronic pain and the changes in our thoughts and behaviors which accompany it. In one study on dogs, when a group of dogs begins to believe nothing they do will change their pain, they stop trying to find ways to avoid it. Even when they are presented an opportunity to avoid the pain, they do not take advantage of it. They are no longer looking for the pain-free solution. http://psychology.about.com/od/lindex/f/earned-helplessness.htm

Personal/Micro Example:

In many ways, I find myself fighting against this loss of hope for a pain-free time. I no longer remember what it is to be without pain. I find myself behaving like the dogs no longer looking for a solution. In my defense, I have found things I still find extremely pleasurable, to the point where I do not wish to lose sensation even if it involves some continual pain.

I want the pain in my legs from a long run because it displaces the pain in my head and forearms. I want the pain because it means I am not numb. Finally, I want that pain because I can follow it with one of the most exquisite feelings I know. The moment after the run when I turn the cold water in the shower and it beats down on the back of my head. The cold shock spreads as the water goes down my shoulders and almost always makes me shudder as it hits my butt. Still, the ecstasy isn’t complete until I’ve shifted my shoulders to send some of the chilled water down my chest over that most sensitive spot just inside the hip bones. In trade for that first 30 seconds in the cold shower after the run, I will gladly overheat and tire my entire body.

Those positive physical sensations are probably all that separates me from those dogs in the experiments above who no longer look for ways to stop the pain. My experience is still giving me reason to hope and try, even as the length of time with pain a constant companion decreases my expectations for relief.

Societal/Macro Example:

I see a similar pattern emerging with our healthcare. We have been taught for generations about “American Exceptionalism.” Our strength comes because we are different, and surely this makes us better. There seems to be a perception amongst many the Affordable Care Act will make things worse for us as it hauls us toward similarity with foreign medical systems/markets. Outside of politically biased sources looking for reasons to deny Obama credit for anything, the most common things I see are concerns about change and being the outlier negative case in a system geared more towards helping “others.”  Still,  as a  guy who favors utilitarian beliefs of “greatest good for the greatest numbers,” I look at and follow publications like http://www.commonwealthfund.org/~/media/files/publications/fund-report/2…

I note the U.S. was last amongst the 11 countries studied in healthcare performance measures. This study included patients and physicians. Without a single payer system, it is not surprising that we rate low on access to care. What surprised me was our low rank on outcome, quality and efficiency measures as well. For this “great” system so many seem hell-bent on preserving, we pay more per person and more as a percentage of our total GDP than the other 10 countries studied.

I think it is natural to fear change if you think you are being well served, but are we as a nation being well served? Most of the quantitative research I have read says no. The problem is hearing this flies in the face of what we think we have experienced, example after example of our medical system as “American Exceptionalism.”  I even recognize I am one who has benefited from the differences between our healthcare and other healthcare systems as I doubt I could have been placed on Tysabri as quickly as I was in any other system.  So it would seem natural to believe we have it as good as it is possible to have.  Why change?  We have a natural tendency to imitate the dogs who believe nothing they do will improve their lot in life.  It seems a very natural problem, recognizing the possibility of “better” because it flies in the face of knowledge seemingly reenforced for years.

The hardest things in life are often difficult primarily because they involve risking a challenge to areas we think a strength or truth.  The most dangerous knowledge is that which we no longer question.

 

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