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. Previously, back in January they said I was covered until next Feb in 2017. Legally, you guys, can they do this?

 

The Nami statistics are thus: For those of us who take an antipsychotic, whether it’s a traditional old school Haldol or Thorazine or an ‘atypical’ like Invega, Geodon or Abilify,  for a decade, they say that percentage of us who will get tardive dyskinesia is 30-60%. And that type of drug is not taken temporarily. Its a drug they give you and tell you you’ll be needing it for the rest of your life. So we’ll all be taking these meds for a decade unless we try to go without them, find out that we can, and get off of them. For me, it’s too late.

It’s also referred to as Parkinsonianism. There is no cure, only expensive symptom management.

I’m on a critical medication for this.  My Part D, Silverscript, who is owned by the wonderful folks at CVS  (wouldn’t that be a monopoly a pharmacy chain owning part D Medicare benefits?) who had approved me thru Feb of next year. Sent me a notice, …..ten days before my next refill that they are cutting me off. I have no time to react.

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?  Has anyone done an individual appeal process? The doctor says on their end, they are out of options, have appealed this decision twice. Now I hear about it.

Will they still give me my meds while we are appealing this? Is this even legal?

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?

Discriminated Against from Local Nami…still trying here but no response

This is a letter I wrote to a woman on the board of directors of NAMI Broward County

It’s hard when they ask for volunteers again and again but don’t return my calls or respond to my application. Ever since Tardive Dyskinesia, people see me differently, even though I exhibit no symptoms. I’m not even angry about any of this…..it just is. Maybe I’m meant for something else.

 

 

hi Edna
Thank you for emailing me back.

One of the reasons I was interested in volunteering for NAMi is to understand how our government works. The difference between an’ act’  ‘ballot initiative,’ etc. I have seen a few things lately that do not seem fair. Especially in our state. I think some activism is aggressive, silly and preaching to the choir. Like Hashtag campaigns and protests outside gates of pharmacy companies.

I’m speaking with John Rother at National Healthcare Coalition in DC, the FDA’s Orphan Drug Development Department and other people on this business of skyrocketing Generic Prices as I am doing a a consumer article about how to predict and prepare for things like ER Depakote shooting up to 1700 because it’s been repurposed and reclassified ‘Orphan.’ My Tardive med is now 300 a month and it’s an ancient generic like Klonopin. I want to volunteer in more ways than writing and John Rother told me to hook up with local Nami. It’s not for lack of trying on my part.

Nami knows how to advocate effectively. Not only do I want to write a series “Advocacy Made Easy,” I hoped to soak up Nami’s wisdom by being a ‘part’ of.

I did call David and over the phone fill out an application. Are you aware this is the fourth time I have tried to volunteer for my local NAMI?

In the past, I have started, publicized, nurtured new peer support meetings and at AA they still ask for me to come chair meetings because I am vigilant, spontaneous and can think on my feet. This is from two decades of live radio. That is the volunteer activity I’m best at.

Can you imagine attending ‘connections’ meetings, hearing over and over the need for volunteers to facilitate new ‘connections’ meetings and to call the office four times and have the calls never returned?

Edna, I feel I am being discriminated against for having tardive dyskinesia and speaking about it. In addition adhd impulsivity, before it was under control….let’s put it this way. I volunteered for Rebels and nurtured Eating Disorders Anonymous, Dual Recovery and finally OA before I was knocked over by tardive. I am not angry about it, I’m getting used to it.

It took three years to get it under control. I couldn’t drive or sign my name for three years. I must have gone on twenty docs appointments and ER four times.

It took two more years to get over my anger and grief over the process and stigma I encounter and still do within the medical and psychiatric community. When I came back around Rebel’s Decided I am unstable. Yet other volunteers of theirs call me to say they are being followed by the CIA and one of the secretly slid me a bottle full of narcotics wrapped in a New York Times.

I do telephone outreach for International Bipolar Foundation but I soooo wish I could have a peer support meeting. I might get involved with DBSA and try to get space donated from the Hollywood Beach Community Center and have a DBSA meeting in South Broward, as there isn’t one. I will have to drive up to Margate and Pompano, but I can do this.

Thanks for being kind to me and letting me know there was at least one person within Nami who cares.

Nami Broward County, needing help with Newsletter & asking for general volunteers Ignores Me.

AllisonBlackandWhite

 

I just could not resist this one. At the NAMI meeting at the Drop In Center they always ask for volunteers to organize and chair their “connections” meetings, need someone to do their newsletter and all phone calls I’ve made to them (five in all) have gone unreturned. “She’s trouble,” She’s got Tardive Dyskinesia and she’s Angry…” I know because well, you’ll read it in the email I just sent them, accusing them of discrimination against me for being slightly vocal about Tardive Dyskineisa. I don’t mention it everywhere I go…but I do speak up. It’s real. I have it. There are ways to delay or avoid it and still take your medicine. That’s what I want to get across. But now I’m asking..how do you think they will respond to this email? I would lay odds they will continue to ignore me like they have the past two years.

 

Dear David and Edna

I haven’t heard anything since I did the telephone interview and left David a Followup message on ‘starting small’ to work towards a common goal. I feel that because I have Tardive Dyskinesia and occasionally mention it, I am being discriminated against.

 

This happens in the medical and psychiatric community as well. I am the face of a frightening, at times grotesque statistic, even though I’m asymptomatic and pretty happy about life.

 

I’m not angry. it happened, It took three years to get help and I did a series of friendly, low key  videos for International Bipolar Foundations’s Youtube page how to find that ‘needle in the haystack:” the neurologist who is a movement disorder specialist who further specialized in Tardive Dyskinesia, comfortable treating the mentally ill. Not all neurologists are, my friends.
I had a nurse practitioner tell me she wouldn’t take me on for fear of ending up in some bitter lawsuit if I got worse under her care and have been thrown out of every office where I simply sought a second opinion. I’ve had the same collaborative psychiatrist for seventeen years and have stayed out of the hospital for that long as well.

 

When I’m in bipolar depression remission I am still able to go places, write and do telephone outreach, so I take my lumps when I get them. But having volunteered for years at Rebel’s and suddenly being deemed ‘too unstable’ to do so again when their other volunteers pass drugs in the parking lot and call me to tell me the FBI or CIA is after them, well, one has to ask if I’m too unstable or just too threatening.

 

I don’t mean to be any trouble. It’s too bad that you can’t even find the time to call back. It’s disheartening, to say the least.

 

Allison Strong

Stigma where it shouldn’t be: My local Nami.

This is a letter to another person who has tardive dyskinesia and is quiet about it. She’s smarter than me. She realizes it scares people. I’m writing her about being stigmatized and discriminated against by my local drop in center and local Nami. This is not the first time I’ve looked at this issue. For all of you people who are trying to advocate, help others, sometimes they don’t want our particular voice to be heard. I took her name out of the letter and am reprinting it and asking you…should I let NAMI national know about this situation or let it lie? I’ve already cried ‘foul’ locally in a very measured, calm manner. The problem is trouble begets trouble. What would it help? Would it result in more doors being shut in my face? My local Nami is Broward County Florida, by the way. This is my way of asking you: What should I do about this?

Allison

Dear M,

 

Buzzfeed published a list of thirty books on mental illness. My book is beginning to just come pouring out of me. I added bipolar hope blog and a one-off on Mindful Management of Mood Disorders-DBT to my list of publishers. When I saw this list, because I had gotten my first list of books from you, naturally I thought of you.

 

I have a thorny situation I thought I would ask your advice. I want to volunteer in mental health in more than just writing. I am doing a type of telephone outreach developing a database for IBPF and since I’m decent on the phone from years of being a disc jockey and know how to talk naturally, (you just talk and mumble and they get it..they don’t feel ‘slicked’ out..you know?) I am enjoying that.

 

 

Here is the situation. I wanted to write a second article about a drop in center that I’d written a first article about. In past, I volunteered for three years with high hospital clearance. I lead a good peer support meeting. I developed an eating disorder meeting, got us in newspaper, showed up until others began tooo..in short the meeting is still running today. I fell off their volunteer rolls. When I asked to be put back on and take the class, I was told I was too unstable. While it’s true I’m verbal, impulsive and sometimes dominant, especialy with people who have thought disorders and are going at a slower speed, I’ve worked on it and have gotten better.

 

AT that drop in center, there are peer volunteers who have offered me drugs in the parking lot. Others make professional appointments to fix the computer for example and don’t show or call to cancel. I even get calls from paranoid volunteers who think the CIA is after them. I don’t do things like this and I don’t report either. But I’ve run into the same problem with NAMI. I attended a few of their ‘connections’ meetings and was scolded for nodding my head and saying ‘uh huh,’ when someone was talking. They solicited volunteers to lead more support groups. I am really good at this. My calls go unanswered. I tried a third time and filled out a telephone application with the head office volunteer and told him about the problem at “Rebel’s Drop In.” He reassured me I’d done the right thing by confiding in him, as the information would have been relayed to him anyway. They vet us thoroughly. I have been told twice they have no one to do the newsletter. This would be so easy for me and I volunteered. My application has been ignored for two weeks. I followed up with a phone call a week ago and left a message about ‘starting slow and small to work towards a common goal.” it was also ignored.  I got an email from them yesterday and cooly responded that I’m aware I’m being discriminated against because “she’s got that.” she’s ‘trouble,’ ‘she’s angry.’

 

So my email just said, “I’m not angry, this happens to me a lot since I got Tardive and that I understand I’m the face of a fearsome statistic even though I’m asymptomatic. I think it’s the tardive. If I had never mentioned it in a “Connections” meeting I would have been warmly welcomed. I have a strong skill set.

 

Sometimes doctors won’t take me as a patient, and the ones willing to explain said it was because they viewed me as ‘trouble,’ ‘a walking lawsuit’ a ‘basketcase on too many drugs.’ My own psychiatrist of  17 years says I’m an ‘exotic’ and that people just don’t understand.

 

I feel good. I had bipolar depression last year from April to Mid july and it was tough. My new antidepressant is hard to keep down, side effect of nausea. But I’m a trouper.  I realize certain things aren’t meant to be. I was hoping to volunteer for the drop in center or Nami by facilitating ‘connections’ or a ‘mat pilates’ class. The nearest DBT class is held there. I don’t feel comfortable or supported there.

 

I wanted involvement with Nami to learn more about things like mental health parity, ballot initiatives, etc. I had wanted to do a series of articles called “Activism Made Easy” giving examples of petitions signable by the click of a mouse. I was hoping to soak up their expertise. I’d be a great grant writer. Maybe I’m meant to write my book and isolate. I crave human interaction, especially with my peers.

 

I’m at a fork in the road. I’m considering contacting Nami’s national branch and explaining the situation. I am continuing to work on my character defects and off putting personality traits. But I hurt deep inside at an organization dedicated to eliminating inequality and stigma stigmatizing me. It really hurts, M.

 

Allison Biszantz

So be clear: I’m being discriminated against and not allowed to contribute there in any way even though I could help fundraise, do the newsletter, start and nurture new “Connections” meetings and more. I’m also considered ‘not stable enough’ to volunteer again at the local drop in center. That is also a deteriorating situation. Question is…how far should I take this?

 

 

Tardive Dyskinesia Resources and Research: Don’t give up!

Tardive Dyskinesia resources and research.  When I became bipolar I and started hallucinating and thought I had kids, (I don’t) I was put on Seroquel. It was a great drug for me and I believe, based on my experience, that it is a drug that doesn’t cause as much TD. But it has other side effects, which I blather on about endlessly.
I want to help. I want to get the word out there to the 200k people who have Tardive Dyskinesia and can’t take Cogentin like me. It gave me blackouts. If you don’t have this problem or know someone who does, never mind. But be aware that Nami statistics, (and they are funded partly by drug companies so their figures would be conservative) Nami says that 30-50% of us, if on both original and or atypicals like Abilify or Latuda, just for two to mention, over a ten year period, will come down with some kind of movement disorder. No reason to be scared, like I said, most people can take Cogentin and it’s just a bump in the road. I think like 90% can take Cogentin without a problem. And you can always switch antipsychotics or lower your dose with your doctor’s approval. I tried, in the hospital, to wean myself off my antipsychotics because to remove the cause makes sense, right? Wrong. Those of us with chronic TD, even if we carefully titrate down develop “Withdrawal Emergent Syndrome” where the symptoms get worse.  This means that we have a chronic, lifelong, permanent condition. But we need our antipsychotics, right? I know I did. When I came off Seroquel I was so weepy, fragile and hallucinatory, paranoid.
 We’ve been messing with the messages in the basal ganglia (base of the skull in the neck) so long (they regulate thought and movement) that it all rushes out like a dam or levee that broke. I am married to antipsychotics forever. But there is light at the end of this tunnel.  I’m writing this longass blog because of the responses and questions I receive when I mention my Tardive Dyskinesia. I have some info about research and helpful meds that not every doctor knows or cares about. Let me help out here, since I’m the poster child for Tardive Dyskinesia. Or so it seems. that is my platform, Tiny as it is. Because the suffering I went through was anything but tiny.  And if anyone else with TD wants to Guest Blog about their experience or their knowledge of it, be my guest, I’d love to have you contribute to the pool of knowledge that those of use who have it have picked up along the way. Otherwise, I don’t expect you to be interested in this. I am not trying to cause a panic, but we need to be careful about doses and meds.

A lot of people I am reaching thru my blog question me about ‘who helped you with Tardive Dyskinesia?’ Since I was stigmatized, labeled as psychosomatic (even tho Tardive Rates for us on antipsychotics are as high as 50%) I often just got sent up to psych. Initally I was helped by changing antipsychotics back to Seroquel. But the illness progressed. People who have it in their neck and jaw can be helped with Botox injections. I was initially put on Requip and that worked for a month. Then they put me on the other restless leg syndrome drug and I got another month and then it stopped working. The drug that ended up helping the most is a drug doctors don’t want to promote, for reasons I elaborate on at the bottom. I’m sorry this is so long, if you don’t have Tardive, there is no reason to read this.

I struggled for 3 years. One clinic, the National Parkinsons Disorder here in Miami had a specialist who told me, “Your case is pretty hopeless. Get ready to Suck it up.” But he did prescribe Xenazine, or Tetrabenzene (also called) which helped a little but caused depression. I Googled every day and went through various result fields. I saw four local neuros who wasted my time doing complete workups, head MRI’s and all and shook their head in disapproval about the fact that I was on a Benzo. (Tranxene) I guess they thought I didn’t deserve any relief. Remember, there are doctors like that out there.

One more google search led to a movement disorder clinic up the state from me, Shands Movement Disorder Clinic. Call them. Write them to try to find another specialist near where you live. Many neuros have no clue about my medicine for reasons I will elaborate in a minute. Shands is located at University of Miami, Gainesville, Florida. I mention the university affiliation because other times with …medical mysteries I’ve had good luck with University doctors cause they still care about their work. I write them letters or emails. Anyway, My doctor was a neurologist and he had been doing research with clozaril. I was already on Xenazine and it was helping some, but a small amount of clozaril finished the Tardive off. Other people can be helped with Baclofen, chewing gum, Amantadine and antihistamines and Long acting Benzos like Klonopin or Tranxene, and maybe have a faster one on hand when a thrashing attack starts and they want to quell it. my doctor’s name is Ramon Rodriguez, but he’s gone to clean up the mess at the VA in Orlando. But you can write him.  He has been replaced by a wonderful female doctor. Also….THERE IS ONGOING RESEARCH there is a company called Praxis, Website WWW. Kinect4Study.com and there may be studies within a company called Clinical Connection. Or Segal Institute. Google “Studies for Tardive Dyskinesa.  To get in a study you have to tell them a lot of stuff, and often if you are on other meds they won’t take you. But the Kinect study, which was given to a friend of mine at the NAMI convention two weeks ago, they know you are on psych meds because that’s what caused the TD in the first place!!!

One more point: The reason that the use of Clozaril in low dose is not widely promoted or known is multipronged: 1:There is a 1% fatal side effect, but #2: they have safety protocols in place, namely blood tests to make sure that doesn’t happen. #3 Doctors, who are overworked enough, don’t want to write the scrip for the lab work, and in the first six months the labwork is every week. Then it drops down to every two weeks then it drops down to once a month. It is absolutely Mandatory. # 4: It’s a geneeric drug and no one stands to make any money. It’s the most underprescribed and unfairly maligned drug out there. It was a miracle drug for me along with the Xenazine in small small doses (larger doses of Xenazine create depression) These things get complicated.

It’s the same thing with MAOI’s, doctors don’t want the complications. I had real bad tardive dyskinesia for three years, people looked at me with fear in their eyes, I was Michael J Fox X20 for three years.  There are currently 200,000 cases of this disorder in the country and a bumper crop to come, since doctors prescribe antipsychotics too often in my view, because they act quickly, and are a quick ‘fix.’ In my journeys to Shands Movement Disorder in Gainesville, I have met several people given Abilify or Latuda because their wife left or their dog died. Not the same as a true mental illness. And the risk of heart attack and stroke goes way up when elderly people are given these drugs. For a while there were a lot of class actions against Geodon, and I tried to get on one, but my case would be impossible to prove since over the years I’ve been on so many. But once again, in my view, the more sedative antipsychotics (Seroquel and Clozaril in my experience) are less likely to cause the problem . Also, it can be prevented by using the minum therapeutic dose and you can work with your doctor on that. I’m only on 100 mg of Clozaril and it stabilizes my mood big time. If you know anyone with uncontrollable muscle movements in their face, jaw, smacking of lips or in their neck or extremities, encourage them to seek out a movement disorder clinic.
‪#‎tardivedyskinesia‬
‪#‎tardivedystonia‬
‪#‎schizophrenia‬
‪#‎sideeffects‬
‪#‎bipolardisorder‬
‪#‎endthestigma‬
‪#‎amwriting‬
‪#‎manicdepression‬
‪#‎extrapyramidalsideeffects‬
‪#‎neurology‬
‪#‎movementdisorderclinics‬
‪#‎Parkinson‬’s

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NAMI article published on Mental health discrimination in March

Stigma and Discrimination Where It Hurts the Most: The Local Mental Health Consumer-Run Drop In

Some of you think Allison Strong is strong, but I hurt and bleed, just like you. I’ve actually bled alot this week.

I’ve had bipolar disorder for 26 years. I tried to commit suicide as a small child by drinking alcohol. Obviously it didn’t work. For the first ten years after I was diagnosed I had a high profile career as a major market alternative disc jockey and nationally published music journalist.

When my anti-depressant stopped working, I was under the impression that it was the ‘drug I was to take the rest of my life.’ That’s what the doctor’s at the neuropsychiatric center I was at for 60 days had told us all at family week. It’s what we all thought! At the height of my career and happily married,  I was already cutting corners by getting my meds from my general practitioner. All of a sudden, and on a daily basis from the moment I opened my eyes each day,  I wanted to disappear, or die. By my own hand if I must.

In terror,  I pressed her: “What should I do, Dr. __________? I’m scared to death!” She looked up from her chart with the wide eyes of the truly panicked.  “I have absolutely No idea.” She didn’t suggest I see a therapist or a psychiatrist. She just closed my chart and moved on to the patient next door.  You’d have thought that she was the one with depression. I’ve since learned to be on a team player with my shrink and my mentor at the Consumer-run Peer Drop-In Center.

I’ve been involved with the local drop-in for ten years. I have nurtured successful self help groups, and put hours assisting other individual’s programs as an ‘official volunteer.’ I used to bring ‘Dual Recovery Meetings to the inpatient psych ward on a weekly basis, which required a high degree of clearance.

Five years ago, I fell into a deep, long term depression and struggled vainly with treatment resistant tardive Dyskinesia from my antipsychotic medication. I fell off the grid, and was taken off the volunteer rolls. I was at the same time struggling  with treatment-resistant Tardive Dyskinesia . Happily, both are behind me.

I want to be reinstated as a general volunteer and especially bring a gentle, beginning ‘Pilates Mat’ class to the center. I’m in a ‘well’ cycle. Or, at least I think so.  The women on staff who make those decisions do not. One of them is 400 lbs, and at the time of my eating disorder meeting a few years ago eyed me up and down and declared publicly, “I’ve chosen to be sane and heavy rather than skinny and crazy.” This was an unsolicited indictment of my medications and their effectiveness. Not being able to take medication, I am not as sedate as others.   But believe me, with the antipsychotics I take, I struggle with an oversized appetite and body too!  One time I walked into the center and was  happy to see the project director.  I must have raised my voice.

I said, “Hi ___________, with a huge smile at her. ” She fiercely barked back at me,  “Don’t shout!  If you want to voice a concern, or make a complaint about something, let’s go in my office and sit down.” That day confused me, for I didn’t have any concerns.  All I wanted was to show enthusiasm for our leader. This project director, who has a diagnosis of her own, leveled with me when I asked her about the other girl, who was pulling power plays in jewelry class.

“I think that _____________is triggered by your mania, Allison.  She takes a lot of medicine for that and doesn’t think you take enough. Of course, it’s not her call. As a team, we’ve decided you’re not stable enough to volunteer here again, Allison.  We want to see you WIN here.  I’ve always won there before.  Giving back to other mentally ill  people is like being a wide receiver. It’s total teamwork and feels great.

There are other ‘volunteers’ who call me on the phone, complaining that the CIA is after them and can we meet where our phones aren’t bugged?  How about the legendarily lecherous volunteer who covertly slid me a 100ct bottle of painkillers under my arm out in the parking lot, unsolicited.   He simply knew I had back pain and said ‘try this, it should work. Let me know,’ got in his car and drove away.   Another ‘volunteer’ was referred to me by the drop in center to do some paid computer work. She didn’t show up, didn’t call to cancel, twice.   (She had told the center she was ready to work and needed the money.  They people get to keep their badges, rejoice at official ‘Volunteer’ parties and bat around suggestions for new groups to be formed,  while I keep my mouth shut about the bad apples,  and am again, a lifelong theme for me,  on the outside, looking in.

What would you do?

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