Days b4 my next refill of Tardive Meds, Silverscript is denying coverage

As many of you know, I have a neurological side effect from the antipsychotics that I’ve been taking all these sixteen years. It’s like severe Parkinson’s.

I take meds for it. Expensive meds.

Silverscript, my medicare part D, has suddenly cut me off, just days before my next refill. Legally, you guys, can they do this?

Before you look away, some of you who are on antipsychotics, especially at high doses, will get this syndrome. It’s called Tardive Dyskinesia or a ‘movement disorder,’ and is also referred to as EPS, (extrapyramidal symptoms). No cure. Only symptom management.

The Nami statistics are 30-50% of patients who take an antipsychotic, whether it’s a traditional old school Haldol or Thorazine or an ‘atypical’ like Geodon or Abilify, if you are on these drugs for a decade, they say that percentage of us will be like Michael J Fox x 60. It’s also referred to as Parkinsonianism. It looks and acts like Parkinson’s.

I’m on a critical medication that is partly paid for by a charitable foundation, Caring Voices Coalition. My Part D, Silverscript, who is owned by the wonderful folks at CVS approved me thru Feb of next year. But we got a notice …..ten days before my next refill that they won’t pay. We have a piece of paper saying that I’m covered through Feb of next year, so how can they cut me off at the last minute? Ideas anyone?

My doctor appealed the decision twice and now we get a letter saying we have a right to an appeal. What they are doing midyear seems illegal. Ideas anyone?

15 thoughts on “Days b4 my next refill of Tardive Meds, Silverscript is denying coverage

    • Originally, and we have the paperwork, we’re approved until feb of next year. Then we get a denial. Not sure exactly what to do. The doctor’s office thinks the error is on the charity’s end, the one who pays the massive donut hole and monthly copay. The drug itself is 3k.

      Like

      • we think the problem may be on their end. We think they are the ones who asked the insurance company to pay at a lower tier, which is the ‘reason’ they say they ‘denied’ it. But it has to be all straightened around. If I end up taking it all the way to federal court, which I would do if I had to…it would make a killer story, don’t you think? they make it difficult, painful, expensive, even, to go back to the doctors, other specialists to get other letters of support to stay on name brand, rather than brand new who knows how good it is generic. The thing aobut this med is that it’s carefully calibrated. Too much of it or the wrong blend of ingredients can cause depression. It’s a side effect. I’m on 15 meds for my bipolar and all my side effects. It’s a lot to ride herd on and insurance says ‘no’ at every turn. 39% of drugs have either ‘prior auth’ or not on formulary.

        Like

      • This is part of the reason my husband is so bent out of shape with the meds that I’m on…and he doesn’t even know about this side effect. But the cost is high, I take a lot of pills per day and yesterday I was suicidal.
        I am definitely interested to hear how this progresses and I wish you the best of luck with it. I pray you get it straightened out before you run out of meds.

        Like

      • how long have you been on your regime? How long did the doc say it would take you to feel better? In my 26 years of xperience, the drugs you are on and the doctor you have have a great deal to do with it. Atypical antipsychotics are less toxic than lithium but they bear side effects of weight gain, high blood sugar, diabetes, etc and this neurological problem, tardive dyskinesia. The more sedating a drug is, like Seroquel, the less tardive but the more weight gain. I found the reverse to be true. I have both side effects but people on lithium for 26 years are often in liver or kidney failure so it’s best to find the right meds and lowest therapeutic dosage you can get by with to avoid or delay side effects like what I have described and thanks so much for your concern. I plan to take them all the way to federal court and skewer them in the press. Believe me when I tell you. I’m not gonna be a ‘little person’ and let them run over me because they make it so painful to keep getting denials appealed and overturned. I have time. I’m on disability. I have a working brain, at least these last nine mos I do…and I will fight them with everything I have. It’s part of the reason I write, to figure out how things work so I can spread the word and help others work the system. I want to do this with advocacy too so I can make it easier for larger groups of people to mobilize.

        Like

  1. I’ve been on Tegretol for a few months now with Prozac as my antidepressant. I’ve been on pretty much everything except Lithium. I also take Neurontin for Restless Leg Syndrome, which in higher doses also is supposed to help with bipolar depression, so I am on the higher doses. Ambien for sleep with a trazadone backer in case I still can’t sleep. I’m considering switching pdocs just for the simple reason that I’m not better. But she is highly respected in the area, so I’m not really sure what to do because it seems stupid to leave a well respected doctor. But maybe another doctor will have a new idea.
    You will have to keep us posted on your progress with your med. I’m very interested to hear how it all ends up shaking out.

    Like

      • exactly. only worked for one mo. R U on an atypical antipsychotic like abilify, Geodon, Latuda, Saphris, Rexulti, Seroquel or like that? That is what can cause tardive dyskinesia, which is permanent if not caught super early. I have it for life.

        Like

      • No. I was on everything except Geodon. Latuda and Saphris caused such extreme pain in my legs that I stopped taking it. The pain always seemed to coincide with the normal onset of my RLS. My fear was that the meds were going to cause tardive dyskinesia because they were seemingly making my RLS substantially worse.

        Like

      • Leslie, do you know anyone who has TD? I don’t know that many. Your instincts were right, I fear. I’m on a very sedating atypical, one not popularly prescribed because of a 1% mortality rate and monthly blood draws in order to just get the meds. This med has never had td assigned to it.

        Like

      • No, I don’t know anyone with TD at all. I told my hubby about this conversation the other day. He’s not big on the meds anyway, mostly because I’m not getting better. Have you made any progress yet?

        Like

      • I dropped my press credentials on them and asked about my status. Then I let it go for a few days. Then I called them again. And miraculously there was no problem getting the tardive meds. My tardive is still twitchy, will be forever, might get worse….but since 2010 I’ve had good symptom control. I have to write a story about it. I’m dying over heah. My mood is great. I’ll be on these meds forever unless something better turns up. And it might. I’ve been around long enough to see big things turn around.

        Like

      • That’s fantastic!!!! Good for you, I’m glad that you’ll be getting your meds! I hope something better turns up for all of us!

        Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s