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Generic Copaxone Co-Pay Assistance Not Available in California

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    Generic Copaxone Co-Pay Assistance Not Available in California

    I was diagnosed in September and it has been a fight with the insurance companies to get me started on treatment. I ended up switching health insurance carriers November 1st and they outright denied brand name Copaxone. They approved the generic medication but my copay is a couple hundred dollars a month. This is a huge hardship as I have been on temporary disability since October. As of right now, I can pay the copay but it will use up my families safety net each month.
    I've always said that I would never drain my family financially over health issues. This is something I had decided at a relatively young age and I still feel that way now.

    I feel conflicted to start medication as I know it will cost more down the line if I don't try to slow down the progression or limit amount of disability I will accumulate if I don't start a DMD. But it still feels selfish to put a financial hardship on my husband and kids that they don't deserve.
    I called Mylan and found out that their copay assistance does not apply to residents of California. I don't know why but this is a huge barrier as to whether or not I pick up the medication next week. Have any of you been in a situation where you weren't eligible for copay assistance although you really needed it?
    I don't want to go through the hassle of having my neurologist order new medication after new medication just to see which one I can afford. I also decided on Copaxone as it has the least amount of side effects and is the safest. I will not consider a DMD that lowers the immune system as I plan to go back to work and I am exposed to sick patients all day in my career. I am also unwilling to risk PML, so medications such as Tysabri are out of the question.
    Any advice? For those who chose to forego using a DMD, did you ever regret it?
    “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

    #2
    Hey IntoDust,

    In California there is a LAW that no monthly prescription copay can be more than $250. That is probably why there is no $0 copay program for Copaxone in California, because you receive it as a monthly prescription and the copay cost isn't totally prohibitive. Your Explanation of Benefits should show prescriptions capped at $250 a month. That's still not cheap, but it's NOT 20% of $6,000 bucks per month either!

    From past reading I think you and I are in similar situations with maintaining our own private insurance. I did extensive research on the above, because initially I was prescribed Copaxone. But in the end we went with something a little stronger due to evidence of past disease activity on my spine (that which on you do not want to go...).

    Otherwise it's perfectly reasonable to put your neurologist's office through the paces in terms of finding out which DMT you could get funding for. They are probably fairly used to dealing with patients having insurance issues and would like to see you on treatment. That's part of their job, actually!

    Regarding going on a DMT or not, this guy pretty much convinced me there's no point in gambling if I don't have to:

    https://activemsers.blogspot.com/201...arguments.html
    All the best, ~G

    Comment


      #3
      Originally posted by gargantua View Post
      Otherwise it's perfectly reasonable to put your neurologist's office through the paces in terms of finding out which DMT you could get funding for. They are probably fairly used to dealing with patients having insurance issues and would like to see you on treatment. That's part of their job, actually!
      To clarify what I meant up there - you should be able to discuss treatment with your neurologist as much as you need to as you work to find what is covered. They might have some insight.
      All the best, ~G

      Comment


        #4
        Originally posted by gargantua View Post
        Regarding going on a DMT or not, this guy pretty much convinced me there's no point in gambling if I don't have to:

        https://activemsers.blogspot.com/201...arguments.html
        When I was going through the diagnosis process, this is the exact article I read that convinced me to consider using a DMD if I was eventually diagnosed. How appropriate that you bring it to my attention again.

        Thank you for pointing out the copay cap in California. I think it's interesting that when I was speaking to Shared Solutions in the past when I was waiting for authorization from my PCP's medical group to start brand name Copaxone, there was copay assistance available and I would have gotten the medication for free. I understand the need to put a cap on copays, I really do, but for some families $250 a month is cost prohibitive - especially when a lot of us in California are "house poor" due to ever increasing rent and housing prices.

        I'm just very overwhelmed and I only have until next week to pick up the medication or the pharmacy will send it back to the manufacturer. If I could just get through Christmas and my next neurologist appointment it would be easier as those are two huge expenses.

        And to top it all off, Mylan hasn't even reached out to me to offer to send a nurse out to teach me how to self inject. Shared Solutions had the nurse contact me the day they got the order. I work in the medical field but I have no experience in injecting myself, let alone with an auto injector.

        I'm feeling very overwhelmed right now and I feel... lost I guess. My symptoms are not being managed and I'm just so incredibly exhausted.
        “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

        Comment


          #5
          Originally posted by IntoDust View Post
          I'm feeling very overwhelmed right now and I feel... lost I guess. My symptoms are not being managed and I'm just so incredibly exhausted.
          Yes, California's cost of living can render a couple hundred dollars prohibitive. People do not deserve the financial baggage on top of adjusting to living with this condition. I am uncertain about how I'm going to financially continue with treatment if I have to do it for many years, but since at the moment I can afford it, I'm considering it an investment in my well-being and by default, that of those around me. If I'm whole in the near term, maybe increasing my livelihood will be more of a likelihood. This is where a good measure of faith comes in. <3

          You HAVE done footwork. You just have a few more decisions before you are on treatment. Even though that milestone doesn't end all of your problems, it may be a significant (or partial) head-clearing relief.

          Without adding to your overwhelmed-ness, do you have until January 15 to switch policies again if you need to, to a co that covers non-generic making you eligible for $0 copay?
          All the best, ~G

          Comment


            #6
            Originally posted by gargantua View Post
            Without adding to your overwhelmed-ness, do you have until January 15 to switch policies again if you need to, to a co that covers non-generic making you eligible for $0 copay?
            Unfortunately, I don’t. I switched to my husbands commercial policy when I went on disability as my employer couldn’t hold my job indefinitely.
            The only other option is to go through Covered California. I’m not keen on it as last time we were enrolled, the government paid the subsidy to the carrier but the carrier didn’t enroll us for 6 months because we weren’t in their system for billing purposes but we were signed up online. It was a huge mess that I’m not willing to go through again. It left us uninsured and it was not worth the hassle.
            “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

            Comment


              #7
              Originally posted by IntoDust View Post
              It left us uninsured and it was not worth the hassle.
              I understand your state of mind here - If you can muster it, it could be worth it to call a certified enroller. There's a link for that on the top page of the Covered Ca site. Open enrollment is until December 15 and premiums for low cost silver plans are super cheap depending on income.

              BUT, it does sound like your ducks are already in a row with the policy you found. Taking away the monthly cushion may feel unaffordable. I'm sorry, I don't know if your disability is temporary or permanent. But in terms of avoiding possible disability and burdening your family anyway, isn't this what cushions are for?

              I wish I could help to make the decision easier. Hugs.
              All the best, ~G

              Comment


                #8
                Originally posted by gargantua View Post

                I wish I could help to make the decision easier. Hugs.
                Actually, Gargantua... You did. I think it was kismet that you posted the exact article that initially opened my eyes to the need for a DMD. It was a perfect reminder to me about making the right choice.
                Thank you. This is exactly what I needed at the right time.
                “I’m pretty and tough, like a diamond. Or beef jerky in a ball gown.” - Titus Andromedon

                Comment


                  #9
                  Originally posted by IntoDust View Post
                  kismet
                  Here's to kismet! I hope that you'll feel some relief with starting. Sending peaceful thoughts to you!
                  All the best, ~G

                  Comment

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