Faceless, Corporate CVS/Silverscript Part D Denying coverage of longtime medicine

I hate dealing with these huge corporations. They don’t care. We are numbers to them and they’ve decided my life is too expensive for them. Denial of benefits. Denial of expedited appeals process. Third party arbitrator that they own.

It happens to everyone. A medicine you really need is suddenly no longer covered. In my case, CVS deemed it not medically necessary for me to have Relistor, a drug I take when I really can’t go. I take tons of meds because of Tardive Dyskinesia and a microdose of Suboxone for Chronic pain, part of Tardive Dyskinesia.

Then I do an expedited appeal, and I’m denied again, and now……I’m sent to what’s supposedly third party arbitration, and it’s a phone number that nobody answers. Then I call Silverscript back, file a grievance and ask them when I will hear back on the grievance and they say, well, maybe thirty days. Then I ask about this third party arbitrator, Maximus, the one where no one answers the telephone, and there’s no timeline on when I might hear back from something I mail or fax. Just unbelievable.

 

I ask you…where do I lodge my next complaint?  This story about denial of benefits has been told time and again…..But I’m going to write about it….I just don’t know where.

 

And yet, I’m so religious about taking my medicine!!!!

pills

After 27 years of this, it gets old. I lay out my meds in my tray, aware I’m just buying time until the antidepressants stop working and I go back to square one to find a new cocktail. I’m not easy to treat but we know what works. I stay with my ‘all cash’ shrink, even though over the years I’ve had ten second opinions (tardive will make you do that in hopes someone, anyone will be able to help) and I’m not impressed with whose out there. Especially the ALF and hospital Hacks. Even their patients don’t like them.

Anyway, I ‘forgot’ to put my Wellbutrin out for a week straight. The tray looked a bit light but I couldn’t figure it out and got distracted day in, day out. Well, it worked, I fell right back in the ditch until I figured it out.

I’m ‘over’ taking medication. You?

Why do I blog? I mean, really????

alblackdressmall

 

I used to be in radio, which is a commercial business that carefully calculates who they are trying to reach, how old they are, race, level of education, income, etc. My format, alternative, was aimed at 18-34 year olds, 60-40 men, mostly and women. At the time, I was in my thirties (I did this from 29-39). I knew as an employee, I’d age out sooner than later. When the ad department sells that Saturday Afternoon live remote from the car dealership, they don’t want to send out a 55 year old woman, I mean, not really.

 

The reason I bring this up in the overall discussion of why I do what I do… is I rarely blog and am even guiltier of not reading and responding to others. I hardly ever go on facebook. Twitter? Can’t be bothered, yet this is the best place to ‘reach out and touch’ someone.

 

Basically, I am looking to collaborate on an intellectual level with writers, bipolar so much the better. I’m in that phase of writing articles for magazines and the local newspapers (Miami Herald, South Florida Sun Sentinel, Bipolar Hope, etc.,) and try to figure out which books to write and which topics to include.

 

I can’t figure out if tardive dyskinesia belongs in a separate book all its’ own. What do you think?

I can’t get anyone to tell me how many of us there are.

The info I’ve dug up is of practical information to those of us who take the drugs that cause them…..those atypical antipsychotics advertised as ‘helpful for depression’ that list warnings for antidepressants so the consumer doesn’t realize they are being prescribed a cousin of Thorazine, a drug that helped a ton of people in the 52’s and emptied mental institutions. Those people could now live their lives on the outside.

The info on movement disorders caused by Reglan and antipsychotics that I can’t seem to dig up is even more interesting.

Many neuros in the field say they’ll answer questions and then blow me off.

I know why this is and want to write about it. It’s not damnning, but it’s practical knowledge we are deprived of.

I lost my grant for tardive medicine this year. It’s changed my perspective. To put it lightly.

I am just looking for feedback. But it seems like a crowded field out here. Especially when you get to the point that you are writing for all these publications demanding copy guaranteed to print….it’s hard to come back and blog, sorta.

Self Advocacy

tiarawithoutsilver 001Even warrior princesses crash and burn sometimes….

 

Oh, the time it takes! I lost my grant to get through the part D ‘coverage gap’ or also called ‘Donut Hole.’ I have to be on “Straight Medicare” because I see so many specialists and even my primary won’t accept one of the “Medicare Disadvantage Plans.” He says they are necessary (“Straight Medicare) for ‘Survivability’ but then, Dr. Morton can be a tad dark.

But right now, so am I? How am I going to afford my drugs in the spring of next year?

When they talk about Mental Health Reform, they should start with the Donut hole, because if you get someone all fixed up with mood stabilizers or antipsychotics, and then the donut hole hits…they go all the way back to square one. It’s Sisyphean even. Rolling that stone up the hill over and over only to have it roll down again.

There has got to be some rich person out there who would love my tardive dyskinesia book to be published, give me a small grant so I can pursue that. I’m already hunting down sources so I can get metrics. But who is listening to me, anyhow.

Nord, National Organization for Rare Diseases, has blown off four phone calls and four emails.

Why?

NPR on Prince, The Replacements, Minneapolis Music Scene & 1990’s sax rock band Morphine R.I.P.

princetwoNPR had a whole feature on Prince and Minneapolis today that made me cry when I heard another Minneapolis band, The Replacments. They also played Rrrriott GiRrrl Band “Babes in Toyland.” Were they from Minnesota as well?

I don’t care how Prince died. Everyone has a bottom line. His? To continue performing a bit and KILL THE PAIN. I’m in the same boat.

Only I went cold turkey three or four weeks ago. I slept thru most of it. I went down for a week.

After 16 years of safe use that restored function and allowed me to lift gentle weights, ride the life cycle and swim, The side effects  got to the me. The medicine, even at 1/3 the dose I’d taken in previous years, ( according to experts, EVERYONE goes up in dosage and tolerance) my body shut down. I quit.

If I’m such a ‘junkie’ as the former BFF said, why are there still 100 of The MS is still here? Answer: I never took the full dose prescribed because I lived in fear of terrible, disabling flareups from the “Interventional Pain Therapy” spinal injecttions,  all ten of them 200.00 each and a failure. I also did piltes and paid for four expensive and pointless rounds of PT, stuff I could do at home and electrostim making me worse.

I’m sorry Prince and the 20% of pain patients who become problem abusers   turning to  the streets for a cheaper fix and a cheaper high have to die. I pay for the high they’re chasing. This kills me.

There are measures like Suboxone that are way safer tho you have to be rediagnosed and the idea is to wean ya down. What about the pain? I’ve tried everything, holistic, medical, athletic, hydration, cutting back to gentle exercise but at least “The Box” won’t kill you and buys time while you look for something safer. The truth is, Opiates are a naturally occurring substance, much more  natural than the primitive nerve burning  Coolief, which would work for me but Medicare doesn’t cover it.

The doctor wouldn’t  give me any estimate of my of pocket responsibility or help me set up a payment plan.

So the one ‘respectable’ thing that I would have paid thousands for to get a year of comfort is out of my financial reach and  I have money, too.. It’s called “Coolief,”they have no 800 number and Medicare should be prior authorizing and covering.

It’s three years old. They haven’t caught up.

But back to Prince.

I was listening to Sirius 27, “Deep Tracks” and they had an interview with a local yokel music critic speaking about Prince’s role in Minneapolis, currently a music scene in the grieving process. Then they played a band that should have been a big hit but just …sort of slipped between the cracks. They were on a major record label, critically acclaimed, alt guitar pop with a grunge overtone in the 90’s all of the right ingredients. I know from beign married to a Record Guy (Geffen Records…Eagles, Joni Mitchell, Beck, XTC, Aerosmith in the late 90’s, Jackal, That Dog, Nirvana, Courtney Love, Elastica, Garbage…a boutique, eclectic artist roster from way back) but back to yesterday’s NPR Broadcast

“The Replacements,” Minneapolis other “Favorite Sons”  (‘Merry Go Round; ‘I will Dare’  were songs) were often compared to a British outfit called “Big Star.” Neither of them made it. Just like Prince.

 

Medicare Oversight Company I sent grievance letter says they don’t look into labs. Who does?

Allison Strong i have a huge grievance over seven years of abuse and was directed to an agency to improve quality of service. i wrote out a seven page letter including doctors who would confirm the egregious conduct of a particular Quest Diagnostics lab service location and the systemic problem i found among representatives, being denied a number for a supervisor, finding out at the last minute, when I needed service most, not being able to make a payment plan to secure or guarantee my service, if i didn’t get it i wouldn’t get lifesaving medicine. The agency that improves quality of health told me they don’t investigate grievances of laboratories who draw blood for diagnostics. I need help. This abuse can’t go on. I’m on hold with medicare now. They were the ones who sent me to the agency who says they don’t deal with labs. Round and Round I go.

Heres start of A Medicare Report of Abuse .. Stigma, both racial, socioeconomic and bipolar

ali

 

Hey you guys…I just wrote this up. A formal complaint of long term abuse I endured by Quest laboratories over a seven year period because I was ashamed, cowed and didn’t think I deserved better. They almost succeeded in denying me my critical lab services to get my most important mood stabilizer. They are NOT going to get away with it. I may be one of the ‘little’ people but I’m “mad as hell and not going to take Stigma any more.”

Local Lab Chain’s Long Term Abuse, shame shame shame on YOU@!

 

 

To: Medicare’s Beneficiaries and Family Centers Care and Quality Improvement Center for quality Improvement Organization.

Re: Systemic and local problem in my seven years as a monthly client of Quest Labs, 3343 Sheridan Street Location, Hollywood, Florida. 33021-3606. (the last four digits of zip were hard to read).

This long letter, I’m sorry but there’s a lot to cover, chronicles a litany of abusive treatment, jeapordy of my health, healthcare and access to a most critical medication by one of your providers.

It’s a case of stigma, and if you get to page 8 you’ll see the ‘diversity in reverse’ racial discriminatory aspect as well. I don’t come out and say who’s what color but I do remember distinctly a conversation I had with the supervisor whose name is Augusta.  You’ll be able to see this sad scenario in full blown Technicolor. But there are other types of stigma, abuse, and discrimination as well. A systemic aspect infecting all aspects of the corporation. It can’t continue. You must be informed of this so it doesn’t happen to anyone else.

(I will be sending this to better business bureau, chamber of commerce and any other regulatory agencies I can find too. ‘

Do you want to hear the rest of it?  Let me know.

South Florida Sun Sentinel Published my Opinion-Editorial!!! I’m still in shock.

Photo of a photo

 

 

SunSentinel

I’m one for 7 in terms of freelance writing (This is outside of what I send to international bipolar disorder foundation and bipolar hope).

I have sent out, let me count….7 pieces of content. See, I’m manic and will be all over the place with no perspective if I don’t keep track. Finally, one hit in the Daily Newspaper. South Florida Sun Sentinel. Since my point of view is ironically funny with the airlines metaphor and inflammatory I only became aware they printed my story by the huge amount of backlash!!!!!!!!!!!!!

http://www.sun-sentinel.com/opinion/commentary/fl-viewpoint-pharma-20160419-story.html

Check it out and comment on it if you want to jump in the fray. Topic? Drug prices. Prescription drug prices. Wouldn’t it be great if we could get all our scrips on the corner? That’s what Scarface, the rapper says in his song “Can’t get right” …”We can’t afford our ‘scriptions, so we all gonna die. CVS is slingin’ dope on evry block WORLDWIDE!  See, we little people? We have to deal with all those middle men that make things legal.

Silent, Saddled w/Sadness, Shame.. Noncancerous Chronic Pain compounded w/Tardive Dyskinesia

ClairAndI

If Dr Deb Houry at CDC has her way, being able to sit through a movie in semi comfort and sharing smiles with my friend will be history. Many people will and have already judged me. I’m not happy there’s going to be even more trouble getting pain medication for noncancerous pain.  I have low back pain and over the years have been subjected to thousands of dollars of physical therapy, expensive shots, injections that did not work, judgement, stigma, fear, shame and yes, the pain because unlike most, I do grind through days off. They are called “Holidays.”

When I’m on a Med holiday to keep my tolerance low, my pain is so bad I wish I HAD CANCER. ITS THAT BAD. A relative died recently and I felt envy. It’s that bad. It’s not my mood. My life is good, steady. I have a great publisher. Terrific. Sometimes my personal problem with pain bleeds into my writing and I always have to watch that.

But now, I’m alarmed. As if the horrible side effects I suffer from pain killers and the pain in between doses wasn’t bad enough,

The CDC has issued a blanket, though nonbinding, statement about not prescribing opiates  for any other pain than terminal cancer.  The people with Cancer are the lucky one. They know it’s gonna end and can make their peace with God. I’d do it if I could. But I have to live in a body that is older than my brain, all used up from exercise bulimia and professional beach volleyball.

The ONE SIZE FITS ALL PRESCRIPTION OF THE CDC IS  we’re all children, all going to abuse our meds, get psychologically hooked and die of overdoses in search of a rush.

So not so. Statistically. I never abuse my meds in all 12 years. I need them to work when I need them…they are not a toy. There are many others like me. People with fibromyalgia, lyme disease, arthritis, low back pain, neck pain, migraines…and they are helped. GO RESTRICT ALCOHOL OR CIGARRETTES WHY DONTCHA…

ALCOHOL kills more adult people. And you can’t regulate that.

So they target, judge, forbid and further restrict something they CAN CONTROL with a database and scrupulous doctors, patients and pharmacies.

NEWSFLASH: Not all opiates are intoxicating and unsafe.

 

The whole point of long acting, abuse deterrent meds like Oxycontin and MS contin was there is no ‘high’ or euphoric kick. When I’m not in pain I forget to take it and feel relief that I won’t have side effects. I’ve managed to reduce dosage by 2/3 and frequency by half. I hate the side effects. The pain from professional sports and exercise bulimia to my low back is clearly visible on MRI, 3 herniated, one bulging, and annular tear and disc degeneration throughout.

I should not have to pay the price for people who take more than they should, mix it with other drugs or drinking, sell it, or crush the tablets so they’ll get that rush. I stopped that kind of behavior in 89, right after my bipolar disorder diagnosis, to protect myself. I have too much to lose to give it all away.

If Dr. Houry at the CDD Has her way, I won’t. Have Much. To Lose.

The bipolar disorder community has enough advocates. If they want my two cents now and then, fine. But I want to advocate for an issue that’s really harming my life and those of other people I know, some of whom are in AA. People you would suspect are addicts, but are not. They have chronic pain and are ashamed like me.

#chronicpainlivesmatter