Mental Illness Awareness Week and Patient Advocacy…part of a series

Above…just a real picture of a real human being, shaggy bottle dyed red hair that badly needs cutting….. and all.

We all want to improve our lives and help other people along the way if we think we have something to pass on, a situation we survived. I have several of those. Tardive Dyskinesia. Eating Disorder. Depression, Addiction….Allisonism, if you want to know the truth. But I told you I’d talk to you about how you can get involved, so here’s where I’m coming from.

 

The opiod epidemic drives me crazy, because there are a bunch of people doing their best to bring it to a swift resolution who have absolutely no idea, from an experiential perspective, what it’s like to have pleasure, pain, euphoric recall, the power of suggestion, peer pressure and any number of other mental and emotional factors driving something that’s just so basic…..pleasure, unequaled bliss, is how I remember it.  As excruciatingly difficult as it is, we can reclaim our lives. If I’ve done it so can anyone else. If I get an opportunity to speak to people in any sort of ‘recovery’ setting, (I hate the word ‘sober,’ and the word ‘recovery’ but that’s just me) I will jump to get there, no matter what. Sometimes the one-size-fits-all box of abstinence only 12 step programs gets in my craw, but I get over it. If it weren’t for the rooms of AA, who knows, I might not have made it.

So….here are a few things I picked up from a nice lady at a PR firm who thoroughly vetted me (job references, an interview conference call with their legal team)…when it turned out that for regulatory and legal reasons, they were NOT going to hire me, after all. It was a great experience. I learned a lot.

People at PR firms, casting directors, ad agencies, whoever is trying to promote a product, they are looking for that flash of inspiration that they need, they don’t know exactly what it is, but they recognize it when they see it. So you have to put yourself out there. Get connected with PATIENT COMMUNITIES, http://www.Health-Union.com and look for the health condition that might match a medication that is for that condition, whether you are taking it or not. Often times, we are hired for general “Disease Awareness” and asked to tell or blog or do a video about our story, irregardless of what medicines we are taking or intend to take in the future.

If they ask you to upload a picture, make it a ‘real person’ shot, not a glamour shot. They want someone who exudes beauty and humanity from within, it’s in the eyes, the smile, the tone of voice. I’ve got much more for you on this subject later. Let me know how you are doing with this, or if you think I’m full of shit. Sometimes I am.

About being a ‘Professional Patient’

 

Re: Finding work as a Patient Advocate, or Ambassador, or “Patient Influencer” paid or unpaid.

Last time I posted it was about drumming up some extra dollars by promoting what’s called ‘disease awareness’ or speaking on behalf a drug that’s benefiting you personally. I  promised you a series on this subject. I’m delivering, starting now.

As you probably know, Doctors often work for drug companies or manufacturers of patented medical devices, as recently reported by the New York Times and other major media outlets regarding Memorial Sloane-Kettering’s chief medical officer (CMO), Oncologist Dr. Jose Baselga, who failed to thoroughly and completely disclose his financial ties to industry, particularly in the arena of research. The public outcry regarding the financial pressures brought to bear on the Medical field, something called ‘Institutional Corruption,’ is well-documented in Robert Whitaker and Lisa Cosgrove’s book, “Psychiatry Under the Influence.” (Whitaker wrote “Anatomy of An Epidemic” and “Mad In America,” and crusades for social justice in the treatment of mental illness. His blog, Mad In America, or MIA, is easily findable online. Also, if you’re curious about a medical professional, everything you need to know down to the catered lunches is ‘supposed’ to be on Pro Publica’s “Dollars for Docs.” Dr. Baselga forgot to mention a few arrangements he had, more than a few times, it’s said.

My point? Doctors aren’t perceived as trustworthy as they were in the fifties and sixties, when they did commercials telling people of studies proving cigarettes weren’t harmful. Back then, a white lab coat could sell anything.

For a while Drug companies used celebrity spokespeople to push their products, like Sally Field, Blythe Danner (Gwyneth Paltrow’s Mom), Professional Golfer Phil Mickelson, (Enbrel for his Psoriatic Arthritis), but research shows an inverse relationship between fame and relatability. Just because someone is well-known doesn’t mean you’ll go out on a limb and ‘Ask Your Doctor if Drug X is Right for You.’ What they’re looking for these days is the real patient, the everyday person, doing every day things, and the depth of their story.

 

Patients with otherwise unremarkable lives, like me, or you, are the last bastion of credibility.

The Drug Companies, Ad Agencies, PR Firms, Patient Advocacy Groups, they all want to hear our stories, whether they are stories of success or stories about our struggle. My next post will tell you where to find a few people who are constantly looking for us.

The USA Legal Show ‘Suits’ is charging for new episodes?

Cord cutters of the world unite!

 

Even though the premise of a false Harvard Law Graduate is weak, we really like the show Suits. The above is a picture of Megan (sp) Markle, who happens to be Prince Harry’s girlfriend/fiance and is stellar in the show. Apparently the British Paparazzi, who can be really vindictive, took issue with Prince Harry having a relationship with someone who is biracial. Unbelievable.

The last time we went to Xfinity to see the most current episode of Suits, it said “purchase” for 1.90. per episode. We are wondering if this is a mistake or if Xfinity is becoming greedy and we should dump it.

On the farm in Lexington Kentucky (family visit) w/3 sizes of clothes

horse

Even tho I packed really carefully, when I landed I had slacks that fell off my butt and dresses I could not zip up. We are going to a fancy equestrian party tonight and luckily I had a stretchy maxi dress. I have gotten sloppy w/food, not lifted weights as much as I should and right now, sugar and carbs have ahold of me.  My AIC, which I worked on lowering for four months, has risen w/the 12 lb I gained (all in one place). It’s hard not to feel like my life is out of control right now. Alot of our activities while visiting Dad center around food and drink. And on the subject of ‘out of control,’ I forgot to plan for the weather. I brought too many coats and not enough shorts.

But look at this horse. Do you think he likes me any less for any of that? Of course not. He is a horse, of course, of course.

Comments in Books “the sober truth” and “unbroken brain” on addiction/alcoholism

unbroken brainunbroken brainsobertruth

There are a couple new books about that jettison the ‘wisdom’ spouted in AA. I spent thirty years in “the program” but as a person with bipolar disorder and then three years of uncontrolled tardive dyskinesia, if I shared anything about these issues wanting to make me drink, the whole room would erupt into haters and ‘me toos’

I got tired of tripping on IED’s and left the program over two years ago. These books shed light on different approaches to treating addiction and point out that AA’s success rates, and this includes people who go to expensive thirty day rehab…those success rates are 3-5%. Of course this goes way up if a person stays, gets a sponsor and works the steps. Then the success rate for lifelong sobriety is thirty percent. But what about the other seventy percent of us??? Don’t we deserve an alternative?

“Unbroken Brain” suggests that addiction (and she’s a former opiate addict now successful author and freelance writer) is a ‘learning disorder’ in other words, by experimenting with drugs to begin with, we activate the dopamine neurotransmitter and if we could just unlearn that and replace it with a healthy way of getting ‘high’ we’ll be ok.

“The Sober Truth” points out many flaws in AA philosophy and the multimillion dollar rehab industry and other 12-step treatment providers, who think “abstinence only” is the only way to go. If you remember 8 in 10 people who start taking opiates took it for pain and still have that pain, then you can see that for someone like the late Prince, who had excruciating hip pain, “abstinence only” is not going to cut it. They always relapse and take the same amount they used to  take, but their tolerance has gone down and they OD. It’s a sad story.

Just like with heroin addicts, methadone, always has been legal and it’s proven that it cuts OD’s by 75% percent, cuts down on disease transmission (dirty needles) and cuts relapse on dangerous drugs like Heroin that’s laced with God knows what like crazy!

Everyone screams and demonizes the opiates instead of laying the blame where it belongs…the addicts who abuse the pills.

Oxycontin was terrific in terms of being safe and time-released except addicts figured out a way to trick with the coating so they could get the ‘rush’ of the entire dose right away instead of letting it slowly time release.

And we pay for the ‘high’ they were chasing. I don’t take Opiates anymore but I did so safely and conservatively for twelve years. It bought me a quality of life I can only dream of now. Unfortunately, I wasn’t able to take them anymore due to side effects. Since I stopped, I’ve canceled gym membership, let my pilates classes expire and can’t write nearly as long as sitting in the chair aggravates it.

 

Declaring a Stigma Free, Demilitarized Zone in New Bphope.com (Bipolar Hope) article!

tribal 078

So ironic this article coincided with the passing of the world’s greatest boxer, ne Cassius Clay then Mohammed Ali. Also the opiate wars escalate with the DEA and FDA at cross purposes. It used to be that if the DEA suspected a pharmacy, any pharmacy, of dispensing to abusers or if they suspected a doctor doing the same (and how would a doc or a drug store even know if it’s not on a database but street action) they used to be able to just ‘shut ’em down a la Rico Statute. No more. So anyway, for now, it’s a Stigma Free, demilitarized zone.

I know, you see me as a fighter but bipolar disorder mood cycles and many other things can’t be won by resisting to waging war.

click me and see!

http://www.bphope.com/blog/bipolar-mood-cycles-stop-fighting-and-win/

For Prince’s sake, Cut 2 chase, cut the carnage, widen access to MAT & wipe out black market!!

atcomputerprincetwo

I heard about Prince. So tragic. The Suboxone thing might not be the answer but it does reduce mortality by accidental and intentional overdose by 50%. Restricting access and insisting everyone immediately wean off does nothing to address the 8 in ten drug abusers/addicts who originally took narcotics for pain, both short term and chronic. Studies show 99% of them will relapse back onto heroin or worse. When you go to the street you get no medical warnings or advice and you never know what’s in the drugs you are buying.

I don’t think “The Box” is the Answer, in fact, I wonder about it being its’ own Satan, the negative facts suppressed for profit.

Everyone makes out, the pharmacies, drug dealers, doctors, drug companies…everyone but us.

Rapper Scarface: “We Can’t afford our drugs so we all gonna die CVS is slingin dope on every block worldwide!!!!!” They don’t have any responsibility to use because they’re in healthcare…why should they????? Not necessarily. Then there’s the beaurocratic nightmare of federal officials trying to do the right thing coming up against powerful lobbyists who want the Oxy to continue because it IS safer if used as directed. I had conservative, safe, minimal use of MS contin for 16 years before I quit because of side effects, my body unable to relieve itself of the meals eaten yesterday. That can kill you too. Then there’s the prescription laxatives that only buy a few more years of time. But we’re all buying time.

I for one am sooooo tired of paying for everyone who is chasing a high. I kid you not. I used to be an addict, now I’m not. Furthermore, I don’t abuse drugs…they abuse me. That’s why I quit. Cold Turkey. Done. Hundreds of leftovers left over that I rarely think about. Might need them if I get in an accident and access is so limited I can’t stand it. I’ve had ‘failed surgery syndrome’ when the bones of my feet wouldn’t knit together lasting three years after surgery, steel pins holding my feet together. Foot pain worse than back pain. Of COURS I took narcotics. Then, when they healed I immediately stopped. But the point is I was in legitimate pain due to doctor error and on pain meds long term and then stopped for ten years until my next ortho operation, thanks to ongoing exercise bulimia.  The switcher upper in my fight against cocaine addiction to suppress my appetite. It’s all sort of a hazy dream and my family has now disowned me. Bipolar My fault. My foot problems, my fault. Every new side effect or illness, my fault. My choice. This has been going on since DX.

I’ve been dealing with a night mare that would drive someone less stable to drink or another unhealthy coping  mechanism. Stigmatized by family since my diagnosis of bipolar, Stigma and I are fast friends. Because it came from family I associate it with love and don’t know when to walk away like in the case of the “BFF calling the cops on me and saying I’m suicidal, even though she’s got the plan and the means to attempt it for a fourth time secretly stashed away in her closet. And then this…….It’s about reverse diversity….do ya feel me?

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.

There aren’t enough weeks for all the new words!!!!

Before I forget, as I just looked all these up electronically,..oh, and I used one today. in an article I used the word “Bloviate” as I’d read it in relation to The Donald. It’s a verb. That’s what he does. Go here and there and everywhere but be consistent with his emphatic stances on important and ‘presidential’ topics. Don’t get me wrong, I might vote for him as the lesser of two evils. I’m not sure. Hilary looks “House of Cards” to me but maybe that’s what our country needs.

Exogenos…coming from outside sources.

Conflagrating. A timely word as It means a huge burning fire that devours everything in sight. I ran across this word before the fire in Canada. It was used in a political context.

Pernicious…Hurtful, vicious, damaging.

anomalous…deviating from the norm.

Sobriquet…a nickname or a term for something that sticks.

Imprimatur…endorsement or ‘ok.’ To sign off on something or someone.

 

Third leading cause of adult death physician error

or

 

A topic gets sensationalized, everyone jumps on it and we forget all else. Like my wisecrack about the airlines being like the drug companies. Right now, a hot topic is demonizing the use of opiates. Yet the third leading cause of death is doctor error …sometimes writing the wrong medication.

They are changing the name of my antidepressant, Brintellix to Trintellix because docs and pharmacists were getting Brintellix confused with something else….

Gosh, I had just gotten my pharmacist and my doctor accustomed to the original spelling. As if life wasn’t confusing enough. Instead of further restricting people’s access to pain medicine they should make those doctors slow down and take remedial medical courses after an incident of physician error, as I’ve suffered a few of those and walked away from a lucrative lawsuit. (See: Tardive Dyskinesia, Failed Foot Surgery)Photo of a photo

A pain doc explains how she has to lie to prescribe Buprenorphine

princeThis is from “Under The Influence.” It’s by a doctor who writes prescriptions for buprenorphine. For pain. For addicts temporarily but for pain patients indefinitely. She wanted to speak out.

This practitioner calls Suboxone a ‘stealth’ drug. Read it. You’ll see. There is not a lot of press coverage on the use or lack of use on this drug. There is an alliance organization that matches people up with doctors but it says the limitations on how many patients a doctor can treat at one time…waiting lists, they say it’s easier to just get placed in a research study.

Doc, I need some help getting off this stuff.”

My new patient Marshall*, a pale 63-year-old man who lugged around a portable oxygen tank for his breathing problems, had been stuck on pain pills for years. Sharp pain from a gruesome factory injury to his shoulder 25 years ago had evolved into a nightmarish, shock-like nerve pain down his arm to his fingertips. A succession of medical treatments culminated eight years ago in prescriptions for daily use of oxycodone.

It had worked well at first. But after a few years, he descended into a continuous state of opioid withdrawal. At best, he felt mildly anxious and tremulous. Two hours after each dose, he would skid into a wretched state of sweats, gut-knots and dread. His whole body screamed with a pain unrelated to his injury. He craved relief from the next dose.

Sometimes, out of desperation, Marshall would take the next dose early. In exchange for the immediate comfort, he would accept a guaranteed anguish starting days before the next refill was due. His previous doctor had attempted to help by increasing his dose. Symptoms would subside for a month or so, then return with a roar, growing ever more intense. His arm pain had been relegated to a minor annoyance.

The best solution to his cyclical torment was clear to me. I would transition him to a medicine called buprenorphine.

Opioid task forces springing up in the US at the local and national level have begun to cast a spotlight on the surging opioid epidemic and its deadly consequences.

Unfortunately, a sharp focus on the target of opioid “abuse”—non-medical use of pain pills that has led to addiction in an estimated 2 million people in the US, and to heroin use in 1 million—misses a fundamental problem of a much larger scale. Roughly 17 million US adults living with chronic pain are prescribed opioids for daily use. Many, perhaps most, are not thriving.

Yet without these pills, many find life intolerable. Neither patients nor doctors know what to do about it.

A readily available solution—buprenorphine—is a secret weapon largely still waiting to be discovered. And President Obama’s strong emphasis this week on medication-assisted treatment—especially buprenorphine—in his announcement of his plan to combat the opioid crisis, is therefore particularly welcome.

As a family physician, I am in the trenches with patients battling chronic pain. I have seen Marshall’s story played out again and again. Sometimes people are referred to me for help after limping along on opioids for years. Buprenorphine is often the best choice.

Some make the transition seamlessly. Others traverse a rocky road that tests their mettle. Ultimately, most arrive at our intended destination, experiencing a calm normalcy they can hardly believe. A tolerable vestige of their original pain is still present. Opioid withdrawal and its accompanying super-pain, sometimes known as “opioid-induced hyperalgesia,” have vanished.

Patients describe a sense of release from a box or a locked cage. One said, “I felt like a little troll trapped inside a bottle, a horrible feeling. And now I’m free. I’m absolutely thrilled.”

Buprenorphine is better known by one of its brand names, Suboxone, an under-the-tongue film laced with naloxone to deter non-prescribed use. In 2002, buprenorphine–alone or combined with naloxone—was approved by the US Food and Drug Administration as a treatment for people like another of my patients, Luke.

A gentle giant in a black leather jacket, Luke is a 20-year-old convenience store employee who casually enjoyed a Percocet now and then while hanging out with friends. Then he began enjoying one for relaxation daily after work, “like having a beer or two.” Eventually he found himself entangled.

To avoid the agonizing withdrawal symptoms, Luke began spending most of his income buying pills illegally. He risked arrest. He arrived late for work. He could not afford to move out of his parents’ home. The drug’s negative impacts on his life landed him the diagnosis of opioid use disorder—the latest medical term for the condition most people recognize as addiction.

Buprenorphine is often, in my experience, like a magical key that frees people from their seemingly inescapable dungeon. It is an opioid medication with a unique profile that fits the lock precisely. It blocks withdrawal symptoms and craving. There is no drug “high.” Patients trade sluggishness for a fresh energy. Best of all, the hovering risk of overdose death vanishes.

Buprenorphine was developed decades ago and approved by the FDA in 2002. Yet it remains nearly invisible, despite its potency against a fiendish trio of adversaries: withdrawal symptoms, craving and overdose death. That’s why I call it the Stealth Medicine. It is hidden behind the term “medication-assisted treatment,” which also includes methadone and naloxone. Buprenorphine is the only one doctors can use to treat opioid use disorder in their patients with chronic pain.

Any doctor can prescribe buprenorphine for opioid use disorder, after undergoing a brief training required for authorization, known as a “waiver,” from the Drug Enforcement Agency. Only a tiny minority obtain the waiver, however. Due to federal rules, the number of patients each one can treat is strictly limited—to 100, although President Obama’s plan will increase that to 200—and other prescribers (nurse practitioners and physicians’ assistants) are not eligible for a waiver.

Ironically, there is no such bottleneck on access to the opioid pain pills involved in the deaths of 19,000 people in the US in 2014.

Read more from The Influence:

Meet the Victims of Russia’s War on Methadone

The Anatomy of a Heroin Relapse

…and follow us on Facebook and Twitter.

There are strict rules constraining use of the waiver. For one thing, the patient has to have a diagnosis of opioid use disorder. This diagnosis implies a stark but false distinction between “legitimate pain patients” like Marshall and “drug abusers” like Luke.  The same dreadful craving afflicted Marshall, who lost his struggle to use pills as prescribed, and Luke, who never had a prescription. Buprenorphine brought relief to both.

“Off-label” prescribing for chronic pain is perfectly legal without a waiver. The limited research available supports this practice: It shows that a switch to buprenorphine improves pain and quality of life.

But here’s the catch: Without a diagnosis of opioid use disorder, buprenorphine is rarely covered by insurance. With the diagnosis, it usually is. Under Obamacare, insurance companies must provide coverage for treatment of substance use disorders. Luke pays roughly $10 per month for this otherwise pricey drug, which can run to hundreds of dollars without insurance.

The case of Marshall, the patient with arm pain, illustrates the awkwardness of this situation. He never once used opioids for euphoria or relaxation. He never committed a crime, never harmed a relationship with family or friends, never even pressured his medical providers to obtain more of his drug. A diagnosis of opioid use disorder was a stretch. But I made the diagnosis based on his unwelcome craving, and his inability to resist taking doses earlier than scheduled despite known consequences. This diagnosis allowed him access to this life-saving treatment.

Other insurance quirks can create frustrating obstacles. Lily is a trim and perky middle-aged homeowner, a responsible caregiver to two grown children with special needs. For years, Lily had been prescribed oxycodone for arthritis in her spine. She described what happened.

“The longer you take them, the more they make you hurt. It creates pain. You get tolerant to it. And then you think, I’ll take just a little more, and then you take a little more, and pretty soon you hurt worse than you did before you started taking them. The brain creates this fake pain, a magnified pain that really isn’t there. In between doses you would get a depressed feeling, because you knew you weren’t supposed to take another dose, but you hurt, and this becomes cyclic. When you take buprenorphine, you get your whole mental stability back. You don’t have to worry about driving or feeling dopey. It gives you your life back on a plate.”

Since starting buprenorphine for opioid use disorder, Lily had begun walking two miles a day. For two years, she often had no pain at all. Insurance coverage was in place.

Then the insurance company discovered she was not enrolled in a chemical dependency program. She was thus deemed noncompliant with their requirements for buprenorphine coverage. Payment for the next refill was denied.

A formal treatment program would be overkill even for a patient like Luke, the convenience store employee, although he could certainly benefit from having a counselor. But what about Lily? Such a program would be an irrelevant intrusion.

I re-prescribed buprenorphine for Lily, this time using a diagnosis of pain. Coverage was denied. I appealed. Ultimately I talked with the medical director. He politely informed me, “Buprenorphine is not a good medicine for chronic pain, so it is not an option for your patient. But we will cover oxycodone.” Lily has since switched to a more flexible insurance company.

Robin, a stylish business executive, got coverage because she met criteria for opioid use disorder; after discovering buprenorphine’s unique effectiveness for her fibromyalgia, but before she found me to prescribe it, she had guiltily resorted to buying it off the street.

But what about Sally, a sweet 50-year-old lady on opioids for many years after an injury to her lower back? In a classic example of opioid-induced hyperalgesia, she described intolerable shoulder and neck pain after a demanding night at the community center playing bingo. She has always been meticulous about using her pain medicine as instructed, so she doesn’t meet criteria for opioid use disorder. But with exaggerated pain sensitivity, she might still benefit from buprenorphine.

The tides are turning. Many national leaders are now recognizing opioid addiction as a disease and not a crime. Now we need a more nuanced view of the challenge people face when their chronic pain is poorly controlled by opioids. Many struggle to use their prescribed pain pills as directed. Whether they succeed or fail, buprenorphine may improve their quality of life.

A sea change would be possible if millions of patients with chronic pain were switched to buprenorphine from daily pain pills. This would dry up the flood of opioids leaking out to the streets. Fewer young people would find pills and be tempted to try them. Fewer still would graduate to a gritty life of heroin use, or risk a death from overdose.

Doctors, patients, insurers and policy makers: Take note.

*Patients’ names have been changed.


Lucinda Grande, MD is a board-certified family physician who practices in Lacey, Washington. She specializes in chronic pain and addiction medicine. She has prescribed buprenorphine for opioid use disorder for four years, and currently prescribes it to 70 patients.