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  #1  
Old 10-30-2017, 07:33 PM
Shandor Shandor is offline
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Default Trial to See if Disease-modifying Therapies Not Necessary in Older MS

https://multiplesclerosisnewstoday.c...ing-therapies/
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  #2  
Old 10-31-2017, 10:08 PM
Suebee Suebee is offline
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I'm disappointed in the apparent hypothesis for this study. Clearly, no one wants to be involved in a treatment plan that is of no benefit. But the study doesn't appear to be focusing on other ways to regenerate neurons but on omission of DMD. Doesn't this type of research seem to patently benefit the insurer and not the patient?
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  #3  
Old 10-31-2017, 10:33 PM
Suebee Suebee is offline
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HUMMMM...A quick google search about the trial suggests this about Medicare coverage.
The trial is being run by:
J.R. Corboy Neurology, University of Colorado School of Medicine, Aurora, CO, United States

"...[he] hope[s] to have data in 2020 that will further guide clinicians in this area. The relative futility of presently available DMTs in aging MS patients, especially those with progressing symptoms, argues strongly for development of approaches that diminish neurodegeneration and enhance CNS recovery and/or regeneration.

Disclosure: Dr. Corboy receives research funding from Med Day, Novartis, the Patient Centered Outcomes Research Institute and the National MS Society.


"The Patient-Centered Outcomes Research Institute (PCORI) is a United States-based non-governmental institute created as part of a modification to the Social Security Act by clauses in the Patient Protection and Affordable Care Act. It is a government-sponsored organization charged with investigating the relative effectiveness of various medical treatments. Medicare may consider the Institute's research in the determining what sorts of therapies it will cover."

Why not research CNS recovery/regeneration first? Oh, wait is it because they already speculate that the data might be able to be interpreted in a way to not justify DMDs for over 55 MSers and it will cut Medicare costs for that older population and researching ways to regenerate /CNS recovery AND providing that care to over 55 MSers will increase costs? For e.g., regular PT, cool aquatic therapy, and FES???
Just saying.
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  #4  
Old 11-01-2017, 07:34 PM
GoatHerder GoatHerder is offline
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Default Heck No!

I have, on occasion, considered stopping the Avonex that I've been on for over 15 years. But as my neurologist tells me, most people who do, are simply tired of giving themselves the IM injection every week.

But I'd never do it for a study, or to save Medicare any money! I'm in the age group they are interested in, a hairs breadth away from 60; but my DMD has kept my M.S. at bay and manageable for a long time, and there is really no way I'd want to go off of it.

My insurance company has pestered me from time to time, wouldn't I be interested in a different therapy? No it works, I'll keep it!
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  #5  
Old 11-02-2017, 06:17 PM
heaven_17 heaven_17 is offline
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Default when you put it that way...

Follow the money! Yep, when you put it that way, it sure does sound like an attempt tailor-made to cut people on Medicare out of services...especially when I read this: "Corboy also underscored that the vast majority of clinical trials have not studied disease-modifying therapies in patients older than 55."
Huh.
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  #6  
Old 11-03-2017, 08:34 AM
Suebee Suebee is offline
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What makes me so upset about this trial and the the potential data of stopping DMD is how it will be interpreted?!?

What Biomarkers are going to measured?
If a person with RRMS natural course of the disease is to slowly turn into SPMS, with less inflamation and more neuron degeneration, what biomarkers are going to be used to determine that the DMD is not effective? Inflamation will already be low. What amount of brain atrophy indicates a DMD would have been beneficial? What is the "measuring stick"? Seems like without an established measuring stick to interpret the data, they can make one up after the data is collected to fit their hypothesis.

What level of patient deterioration will qualify as having been preventable with DMD? Will a single relapse of DMD count as evidence the DMD had been working? Maybe a person that is transitioning from RRMS to SPMS wouldn't have had any relapses if they continued to be on DMD. What about cognitive and motor skill changes? How will they differentiate between inevitable MS progression and progression which could have been slowed by continuing to use a DMD? Again, it seems without an established "measuring stick", the data can be interpreted in a way to fit their hypothesis.

This trial has a poorly defined definition of the MS patients in the trial.

The pool of people used for this study is small and hand picked. Selecting MS patients for the trial with solidly defined SPMS who already decided with discussion with their neuro that their particular DMD was not slowing their specific disease process, should not be equated to a trial of patients that are over 55 years old with RMMS transitioning to SPMS! The later is a far larger group.

A Better Trial
What about doing a trial of patients over 55 with RRMS who have just recently transitioned to SPMS and document how well a DMD benefits this individual?!?! Isn't this a better attempt to improve the lives of over 55 year old MS patients and understand which DMDs work best in this population?

Advocate!
We need more treatment options to improve quality of living of MS patients, such as regular PT, FES, orthotics, and access to aqua therapy. Not removal of DMD option and Dr. Conroy's promise of development new helpful non-pharmaceutical interventions. The shame. Remember Doctors promise to do no harm. UGGG.
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  #7  
Old 11-06-2017, 12:43 PM
Shandor Shandor is offline
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Default trial

Thank you for all the insight on this subject. I fall in that age range and am new to the whole MS community. I was on one DMT and it did not leave my liver too happy, so now I am in the middle of deciding whether to give it a go again with another drug. When I saw this trial it made me question whether or not I needed to get on another drug. I appreciate the wisdom you all have in helping me see the reasons behind the research. You're awesome!!
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