Announcement

Collapse
No announcement yet.

Please include MS, etc

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Please include MS, etc

    As we all know, insurance companies are looking to deny whatever they can. Their objective is not to cure us or give us a better quality of life or even to contain longterm costs since they hope that in the future we’ll be someone else’s problem. Their objective is short term profit optimization.

    That said, after 26 years of atypical MS I’ve got lesions up and down my cord but none in my brain. I’m paralyzed with a substantially compromised core, baclofen pump, bowel/bladder nightmare, the usual. My arms work tho I’ve had neuros say they shouldn’t. So I have MS technically but very much “identify” as SCI.

    As the robotics and stim stuff become viable functional treatments as I really see happening, I’ll be denied and the language will read “for any diagnosis other than spinal cord injury, the procedure is currently experimental”.

    I try to make companies aware that they should list all applicable diagnoses in their studies and approvals preemptively and am posting a request to y’all to please keep this in mind and spread the word should the situation present itself.

    Thanks!
    Last edited by Sheri; 1 May 2021, 2:45 PM. Reason: Added pump

    #2
    This site has always included people with spinal cord injuries AND diseases, which includes MS, ALS, transverse myelitis, and a number of other non-traumatic causes of spinal cord damage. You will often find that listed as SCI/D.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

    Comment


      #3
      Right. It’s the robotics and science community who, if they test and license things only for SCI, inadvertently allow insurers to exclude those of us whose diagnosis is not expressly Sci. I’m hoping they instead sweep in everyone up front who might benefit. My insurance company denied me when I was doing estim. It was deemed “proven” for I think SCI and stroke, and thus covered. Because MS wasn’t expressly in the studies and licensing, they happily denied me, saying it was “experimental” for me so not covered. I can’t imagine I’d not benefit from an exoskeleton in a manner similar to any para.

      Comment


        #4
        what therapy was deemed "proven" for sci?
        "That's not smog! It's SMUG!! " - randy marsh, southpark

        "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


        2010 SCINet Clinical Trial Support Squad Member
        Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature

        Comment


          #5
          One of my insurance companies would reimburse NMES (?) little machine/electrodes/supplies with diagnosis of SCI or stroke only but said it was experimental for anything else. That stuff is fairly cheap but no way I’ll be able to foot the bill for an exoskeleton.

          Comment


            #6
            When I sustained an SCI I realized how badly doctors had been treating my dad for years. He had spinal stenosis and when he complained of incontinence then told him it was because he was old. Several things like that.

            Comment


            • Sheri
              Sheri commented
              Editing a comment
              My grandmother died of colon cancer after doc diagnosed her as “nervous”. Ugh

            #7
            Well, some things researched and approved for MS are not approved for SCI because not included in clinical trials as well. This was initially true for tizanadine, and also for the prescription 4-AP. Are you an active member of the National MS Society? They can help you advocate for people with MS (most of whom do have brain lesions) to be included in such trials.

            (KLD)
            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

            Comment


              #8
              Excellent avenue I hadn’t considered! I’m sure study restrictions are innocent. They’re pursuing an idea that they’re hoping will work. But they’re ultimately creating something for the purpose of helping people and/or making a profit so the sooner the wider net is cast, I’d assume the better. I doubt PhDs off in a lab are considering the villainous insurance companies. I thought docs can prescribe drugs “off label”? But not equipment? Or if the Reeve Big Idea comes thru, I’d imagine that’d be categorized as a medical device like baclofen pump?

              Comment


              • SCI-Nurse
                SCI-Nurse commented
                Editing a comment
                Not all insurances will pay for off-label prescription medications. Medicare has it's own rules for DME and medical devices, and is slow to approve them for anyone, even if FDA approved, and many insurances just follow Medicare's lead on this. (KLD)

              #9
              Or do you mean we all got tizanidine legally, off label or not, but mine was paid for while SCI folks wasn’t? So a doc may ultimately be able to prescribe exoskeleton or internal cord stim but I’d have to crowd source or win the lottery?

              Comment


              • SCI-Nurse
                SCI-Nurse commented
                Editing a comment
                Tizandidine was approved in Europe, and the FDA said they would not approve it because we "already have enough antispasticity drugs that work"! The NMSS led the way in getting the FDA to reconsider by providing significant information about the studies done in Europe with people with MS, as well as information on the limited options and poor outcomes of the long-standing approved meds for people with MS. Although eventually approved for SCI and other CNS diseases or disorders, initially people with SCI had to find a doctor and insurance that would allow tizanidine to be prescribed for those who did not have MS.

                Medicare doesn't cover exoskeleton or cord stimulation at all in my experience. (KLD)
            Working...
            X