Ask the Right Question

So often the hardest part of any endeavor to learn is knowing what to ask.  We all look for the readily quantifiable to give us the answer in black and white.  We hate basing our decisions on subjective findings. Did the student get 90% correct?  As a teacher, the multiple choice test gives the easiest answer.  However, the essay which is harder to grade may in many cases, give a truer measure of the students knowledge.   
This week I was at a dinner for MS patients sponsored indirectly by a pharmaceutical company through their patient outreach program.  I tried to get the neurologist speaker to explain what the long term benefits of taking the front line MS drugs were for patients, but she stuck by the reduction in flares line.  I know the standard for assessing the success of the disease modifying drugs (DMD) which is a reduction in flares/exacerbations.  
My question is as patients, why should we care to the tune of thousands of dollars a year about what an MRI says the disease is doing to us? There was a 10 year study’s results released two days after the dinner which said the level of disability for patients on the front line MS drugs was not significantly different from those who took no DMD.  Note, the front line drugs studied did not include Copaxone. 
All of this leads me to two conclusions. 
First, isn’t the real question we want answered, “What can I do to slow/stop the progression of symptoms?” rather than what can I do to prevent flares?  As a patient, I care far more about my ability to see, swallow, and walk than I do about what a picture of my brain looks like.  I understand lesions showing up on an MRI allow us a clearly measurable level of success for DMD approval, but it doesn’t seem to be a meaningful measurable.  The correlation between lesions and disability isn’t strong.
Second, if one accepts the results of this study, should not a bigger push be made for patients to quickly move to the second level drugs like Tysabri which have evidence of halting symptom progression?  Yes, Tysabri has risks for those who are JC+ like me, but for the half of patients who are JC-, why not start with the drug which works best?  For those who are JC+, how about giving the patients the information and options to make an informed decision?  I know J and my decision about which drug to take was always based on the give me 6 good years over 30 crappy ones premise. 
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On a positive note, it seems we have made progress in figuring out which patients may find some drugs ineffective.
These seem able to suggest some classes of MS treatment drugs will be ineffective for certain people.  Maybe once these people are removed from the base, the remaining will be those who will respond well to the front line drugs.  As it is, we should at least be able to prevent recommending patients take the drugs with the known bad/or not helpful reaction for their MS.
Finally, it should be noted none of these studies looked at the new oral pills which will probably take over most of the market due to patient convenience.  I just hope we measure their utility by looking at symptom progression rather than just the easy to quantify MRI results.
We need to ask the right questions.

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  33. The article you listed was on the same study I saw written up in the NY Times and on Patients Like Me. I still think we have asked many wrong questions. This post is mostly on the wrong questions when determining efficacy of treatment, but I still think we have to answer the question on is MS one disease or many with subgroups? The blood test link for me is encouraging because it gives a clue to this question.

  34. Ack, sorry. the link I had before was changed since I wrote the first part of this last week. I corrected the link. to webmd which has the same article I read last week.

    Thanks for catching the bad link

  35. This is a wonderful, timely post. I did see the article, and sent the link to my neurologist, who had agreed to accept my discontinuing the DMD injections last fall. And watching the orals for their own efficacy is also critical, as I believe they are designed along the same premise of linking the immune system to the central nervous system is the only avenue toward finding a cure. I am more in

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