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?

CEO of embattled Valeant Pharmaceuticals Taking a Time Out

It’s been a tough year for Michael and Ackerman of Pershing,  the hedge fund Valeant merged with. They both lost credibility, dignity and cold hard cash. Bummer.

The man at the helm of the embattled Valeant Pharmaceuticals, CEO Michael Pearson, has a case of pneumonia so severe that he’s temporarily (or is it permanent?) stepped down to recover.

What a tough year it’s been for him.

Pop Quiz:

Is Valeant most famous for:

A. Raising the price on old generics by reclassifying them as ‘orphan,’ under the “Orphan Drug Act?”

B. The scandal that ensued when their price protecting relationship with a mail order dermatology pharmacy became public?

C. The ensuing media glare.

D. The subsequent 50% devaluation of Valeant stock since August.

E. All of the Above.

If you answered “All of The Above” you get 100%, which makes you a Winner unless you happen to be on one of the generics that got classified ‘orphan’ and repriced. But if you are on Medicaid, this won’t hurt you, as the taxpayer is known for picking up the tab.

But that doesn’t mean that we shouldn’t mobilize and write letters to our senators and congress people.

Young Wonderboy Martin Shkreli, out on a 5 million dollar bond has actually become more famous at the expense of the public, who assumes he’s the only one who is doing this. The rest of Big Pharma is publicly distancing themselves from him and pointing out, “He’s not representative of Us.”

What a laugh.

Lesson of the story? Look for an upcoming blog or article in IBPF on this, (High Pricing of Low Cost Generics and what we can do about it) and (Activism Made Easy) the followup.

Also, the National Coalition for Health Care (NCHC) in Washington has a campaign called “Campaign for Sustainable Rx Pricing.” They take donations and have other ways we can get involved. valeant guy

More on Genetic Testing for Antidepressants and other meds

ali

 

 

This is a long post but what you read may help you out. I’m going back on the trail of researching and finding someone to do genetic testing on me for the best metabolized psych med in the event of my next bipolar depression due to antidepressant fatigue. My antidepressants last typically for a year or two and then poop out. I want to know, ahead of time, what would be the best pill to take. In the last five years, I’ve had incredible luck with Viibryd (2 years), Brintellix and Fetmiza. All of them worked in a week or less and lasted from 8 months to two years. Right now I’m on a combination of Wellbutrin (which I took effectively for a five year period starting fifteen years ago and Brintellix, which is a new drug that they don’t know exactly how it works but for me it was a ‘Rescue’ drug that I use for Code Black situations. I only take it twice a week.

Yes, I talk about meds a lot. Many people with mental illness are still sick, wondering if they are on the right medicine. this post is super long but it’s about a brand new way of finding ‘the right medicine’ that will work for you, as an individual, for your brain chemistry. I think it’s important.

 

Many of you know that I wrote a letter to my nearest location of a Mayo Clinic, in Jacksonville, Florida. I live near Miami, in Hollywood. My letter was ignored. At Mayo clinic, no matter what kind of health problem you go in for, genetic and enzyme testing is “the standard of care.”

No matter what, when you go to a Mayo Clinic,  they do genetic testing and enzyme testing to see what drugs, not what class of drugs-we already know if you need a a statin for high cholesterol for example, but which exact one, be it Lipitor or Zocor or Crestor…see what I mean? Narrowing it down to the exact brand or generic name.

It is important to narrow the possibilities or possibility down precisely to dose you with what YOUR body will metabolize the best.

The problem is that Mayo clinics aren’t taking any new patients and my request to be put on a waiting list when I tried both the Phoenix and Florida locations was met with, “We’re sorry, we aren’t taking new patients and there is no waiting list.”

This sounds like the VA. I wonder if they took pages from the same playbook. Sometimes the medical profession can be a cold, calculating place.

***

Back to the topic of finding the right or a new psych medicine if you’re in a depression relapse,

If the doctor just ‘guesses’ what he thinks might be right, (or which new drug has been promoted lately by a drug rep in whatever means they promote-I’m told Golf trips are sometimes involved), there’s a chance that your genetic makeup and or enzymes will not break down the drug it will just freefloat in your bloodstream;  jamming up your internal eliminatory organs, increasing toxicity, negative drug-drug interactions and (god help us) chronic, incurable side effects, like the Tardive Dyskinesia I took. The drug I think caused it was not real effective for me, so my dose was jacked up beyond the recommended top end, and I think that was the last thing I needed-I needed a different drug. This is why I got sick with TD and will have it for life.

What is ideal is finding a drug that your metabolism (read enzmes) breaks down into molecules small enough to pass through the blood-brain barrier, so it can do its’ work and make you whole again. This is very important.

I’ve heard Medicare pays for this testing but right now, but not every doctor who takes the measly compensation of Medicare reimbursement wants to deal with the extra paperwork.

 

And the ones that will do it that I talked to want ridiculous sums of money, like 500 bucks, to administer the tests, read the results and then prescribe the best drug.

Furthermore those types of ’boutique’ psychiatrists are often the ‘all cash’ ‘no insurance’ and certainly ‘no medicare insurance’ type and don’t do hospital rounds anywhere. That means, that if you are like me, Bipolar I, and might have to go inpatient, they don’t want to treat you. They way they put it to me last time I was depressed and worried I might have to go inpatient it was clear that they did not want ‘acute’ cases, as they put it.

 

They want the well educated, well heeled, well-off working professional with a mild mood disorder willing to come up with the cash each month for their med check.

Most of the seasoned, really competent good psychiatrists I know (and I’ve had ten second opinions while staying with the same doctor for fifteen years just to know who is out there) well, they’ve already done decades of hospital work and don’t do it anymore either!!!

Pre-retirement, they are reaping the rewards of their years of experience in the trenches, ministering to the very ill, like I was when I met my shrink of fifteen years.

He no longer accepts Medicare or Medicaid or insurance as of 3 years ago. On the plus side, there is continuity of care and I’ve not had to go inpatient for that period of time. Knock on wood.

***********************

But I digress again:

Back to the point of Genetic Testing: We’ve known for some time that not every medicine works for every person. Sadly, for psych patients in depression or a relapse into bipolar depression or schizo issues, it’s a painfully long period of trial and error.

Like I said, one time it took Dr. L to help dig me out of the dark. We tried this and that and in the end we tried another SSRI and I was one of the subgroups of the population who has to wait twelve weeks, not four, for the SSRI in this case, Prozac generic, to become effective. Whew, what a relief. If we had genetically tested me, it would have shown that Prozac would not have been a recommended choice. It only lasted a year anyhow and I had another relapse and switched yet again. I was lucky again. The first one we tried, worked. By the way, he’s cool, he knows I have a sixth sense and lets me help choose what he offers.

Recently I saw a testimonial to the effectivement of genetic testing in a reply to a post on International bipolar Foundation’s Facebook page. Those people, by the way, as well as bipolarhope.com, (bphope.com) are good resources for general and specific information on all sorts of things.

Not to be deterred by the fact that my local mayo clinic’s chief of psychiatry ignored my letter, I’m going to try again. I’m going to announce my journalism credentials and tell them I’ve got both a personal and profession interest in testing to find out which antidepressant would be best in the need of diggin out of my next bipolar depression.

My last one was in April and lasted until July. It was shorter than the year-long one in 2005, but unendurable just the same. I considered suicide every day.

You guys might think I’m strong, like my name but that’s an aspiration. I’m actually not.

I have severe chronic pain and some days I worry about the day coming where I’ve outlived my body’s usefulness and can go no more.

With all the crazy healthy lifestyle choices like raw foods diet, daily exercise and weight training (even though I hate it), I have this feeling I’ll live to be 90,  accumulating more side effects from the medicines for side effects.

I’m already swimming in a sea of them. Once again, side effects or the absence of them, can be traced to finding, as Nine Inch Nail’s Trent Reznor said, “The Perfect Drug.”

(For Tardive Dyskinesia info it’s both on IBPF Youtube channel under “Tardive Dyskinesia” part one, symptoms and cause and statistics and part 2, Getting treatment and the Website, ibpf.com “Move Over Movement Disorder).

I’m going to try again to get them to see me, even though they say they are taking no patients.

I’ll let you know what happens and when it happens. If this shit didn’t work, no one would be doing it.

Reading Material “The End of Illness” David Agus, M.D.

He has his own company that does testing and it’s expensive. ali

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

See More