Updated "About Me"

If anyone is interested, I've updated the "About Me" section


-----Updated Text-----
I apologize for not updating this part of my site for a while, but I've been fighting with the incompetent, ignorant, rude imbeciles who run CYS (Children & Youth Services) for over six months concerning my wife's and my need for prescription opioids. I've been told that they've never gone after people as hard as they've been going after us, that includes heroin addicts and crack whores. They routinely lie on court paperwork, leak confidential records, commit perjury, and they're constantly change their story & accusations. We've had to prove that we are ill enough to require opioids, but not too ill that we can't care for our daughter. Thankfully, our family doctor has not abandoned us. He knows how much these medications help us and he knows that our daughter is well taken care of. Thankfully, my state has never had a law allowing children to be taken from disabled parents and there are federal laws (i.e. Americans with Disabilities Act) that protect us, slightly. Unfortunately, we still have to prove that our medical conditions don't prevent us from caring for our daughter. Aside from our doctor, we have our almost useless lawyer who can't schedule a meeting, and a great subcontracted (not a CYS employee) parent educator who isn't afraid to tell the truth, even if it isn't popular and even if it contradicts her conclusions. We've also been complying with their ridiculous WEEKLY urine drug testing (costs taxpayers $100/test per person). I really wish that they'd switch to saliva testing, or better yet hair testing, which covers the last 3 months (more, if you're willing to pay for it) instead of the 2-3 days that UDT (urine drug testing) covers. I did the math once and found out that you could buy a VERY nice car with the money that they've spent harrassing us and violating our rights. Privacy is a thing of the past.

OT - FDA Approves New Opioid Addiction Treatment

FDA Approves New Opioid Addiction Treatment - National Pain Report
http://bit.ly/1oQMbPd

This isn't a new drug, just a new formulation of buprenorphine, but it's worth noting anyway.

Some of you may be wondering why I'm paying about an addiction treatment and it's a valid question. As pain patients, we are constantly grouped with addicts and we need to stay informed. Also, some PMs have prescribed Suboxone for pain, which is stupid because buprenorphine only treats pain with doses below 0.3mg/300mcg per day (Butrans is the only buprenorphine product capable of treating pain). The reason why doses above 2mg don't work for pain is that buprenorphine is a partial mu-opioid agonist (it acts like naloxone/Narcan and naltrexone at high doses and blocks opioids).

If we don't know the names of these addiction treatments, PMs can lie to to us.

SUBOXONE, BUNAVAIL, BUPRENEX, SUBUTEX, ZUBSOLV, AND ALL GENERIC BUPRENORPHINE PRODUCTS ARE FOR ADDICTION TREATMENT ONLY, DO NOT TAKE THEM FOR PAIN. Buprenorphine pills aren't for pain, only buprenorphine patches treat pain.

Steve

DEA official blames pharmacists, doctors for pain-med denials | Drug Topics

DEA official blames pharmacists, doctors for pain-med denials | Drug Topics
http://bit.ly/1kaNunT

My Story: The Dark Side of the Anti-Opioid Campaign - National Pain Report

My Story: The Dark Side of the Anti-Opioid Campaign - National Pain Report
http://bit.ly/1unVrhi

This article, and the comments, really say it all. The anti-opioid propagandists are doing nothing to fight drug addiction, but their restrictions are destroying HUNDREDS OF MILLIONS of lives. Even the lucky few who have prescriptions are afraid to sneeze wrong or risk being cold turkeyed.

Opinion: Bill Would (Have) Force(d) Drug Makers to Make Painkillers Tamper Resistant

Bill Would Force Drug Makers to Make Painkillers Tamper Resistant- National Pain Report
http://bit.ly/1kYSnVB

I know that this story is about two years old, but there is talk of reviving this bill in light of the Zohydro (non-tamper-resistant hydrocodone ER).

There are several problems with tamper-resistant opioids:
1) tamper-resistant opioids don't always work as well (or at all)- they're tested on healthy people who have an easier time absorbing them (the healthy people have to absorb them within a 30% tolerance)
2) they don't stop people from abusing them, but it does weaken the "high", which causes them to go to diacetylmorphine/diamorphine/heroin
3) they increase pharmacy prices, which makes it harder for pain patients to afford their medications
3b) increased pharmacy prices lead to increased street prices, which causes addicts (& sometimes even pain patients) to switch to heroin
3c) street heroin has unknown potency, unknown impurities, & poor oral absorption causing people to resort to intravenous injections

The ONLY way to reduce the harm caused by drug addiction is to switch from the law enforcement model to a treatment based model and to LEGALIZE ALL DRUGS (private prisons and the DEA would lose money, so they spend a small fortune fighting this). Legalization (& the drop in prices that this would cause) would eliminate the violence, crime, and disease (people inject heroin because it HA poor oral absorption & injecting is cheaper- same high from less drug; legal drugs also lack the dangerous impurities found in street heroin).

Rat Park

Rat Park Comic

Please check out the comic version of the Rat Park experiment, which shows that opioids are not the addictive demons that we've been told that they are.

http://bit.ly/ratpark

Be sure to check out the "Links/Articles" page on there right for more great resources, such as the Intractable Pain Patients' Handbook for Survival.

Steve
IntractablePainKills@gmail.com

Sham Medical Devices & "All-Natural" Treatments

I recently responded to a question about NEUROVA, a copy of TENS unit that doesn't require a prescription (a HUGE red flag).

This led me to the decision to write a post about scams. Scammers are taking advantage of chronic pain patients, especially desperate pain patients, and the current climate regarding opioids.

The most common scam medical devices are "electric stimulators", which are a cross between those electric weight loss belts from the 90s that were supposed to give you abs without working out and TENS units, they bypass FDA clearance & approval by calling them "electronic massagers". These "TENS" units are not the same thing as the more expensive FDA approved TENS units that treat pain, especially neuropathy. Any legal TENS unit (the devices that can treat pain) require a prescription. Really, anything that is supposed to treat pain but isn't approved by the FDA or a similar international agency is suspect. Prescriptions are required for all legitimate longterm pain treatments with only a few exceptions (even FDA approved OTC treatments, like acetaminophen/paracetamol/Tylenol and Ibuprofen/Advil/Motrin aren't safe and effective longterm chronic pain treatments without doctor supervision (which is why the label tells you to seek medical care if you haven't improved after a few weeks). Acetaminophen/APAP is hepatotoxic and NSAIDs cause stomach irritation and bleeding.

Anyway, back on track...

When it comes to sham medical devices and "all-natural" treatments, the websites are great places to found clues, the wording frequently gives them away. Examples of Ted flags include:
* bad mouthing other treatments, especially opioids
* vague explanations of how it works
* not listing ingredients
* anything that's "proprietary" or "patented"- Remember patenting doesn't mean it works, it means they filled some paperwork. If they're advertising or bragging about the patent, they're scraping bottom for ways to con you out of your limited resources

If you want all natural, drug free treatments, research & purchase specific supplements, not "proprietary blends". You can save a fortune by purchasing these ingredients in bulk and putting them in capsules by yourself. Amazon sells everything you need, if you're interested.

Disclaimer: The links above are affiliate links, which means that if you click either link and subsequently make any Amazon purchased I, or rather my daughter's college fund, will receive up to 2% of the purchase price of eligible items.

Why are patients shut out of the debate over prescription pain medicine? - The Washington Post

Why are patients shut out of the debate over prescription pain medicine?- The Washington Post
http://wapo.st/1j9NRo1

This article really says it all, well maybe not everything, but they hit the major points. Please read it in its entirety

Opiophobia & Insurance

It has come to my attention that more and more insurance companies are refusing to cover pain management, opioids, longterm opioids, and/or procedures. Or, no PMs in network and within a reasonable distance.

I've heard of this occurring with Medicaid (parts of Florida), HeritageCare (parts of Florida), and private insurance (some BlueCross BlueShield plans) and I find this very worrisome.

I would appreciate it if anyone who knows about specific cases of this would common below and/or email me (please specify whether or not I may publish the information you email me). Please include:
* the type of discrimination (higher copay, unrealistic quantity limits, prior authorization on generics, duration limits, PMs not covered or not in network, PMs who practice opioids not in network, etcetera)
* the company name
* the type of plan (Medicare Part D, Medicare Advantage, Medicaid, Medicaid HMO, private insurance HMO, private insurance PPO, private POS, private FFS, ACA exchange, Tricare, VA, etcetera)
* state
* description.

If anyone knows about any petitions focused on this issue, please add them as comments and/or email them to me.

We cannot allow this practice to continue or, even worse, spread.

Steve
IntractablePainKills@gmail.com

The Innocent Victims of America's Painkiller Panic

The Innocent Victims of America's Painkiller Panic | The Fix
http://bit.ly/1qh5Xbr

The Problem With Pain Pills: A Letter to Mr. Barry Meier and The New York Times

The Problem With Pain Pills: A Letter to Mr. Barry Meier and The New York Times
http://bit.ly/1iZROKS

This amazingly well balance article is a response to a highly irresponsible article that was in the New York Times, and reposted on DrugFree.org

I highly recommended that you all read both, but remember that the NYT article is a highly misinformed, highly opinionated EDITORIAL article.

Fear Of Addiction Means Chronic Pain Goes Untreated | Health News Florida [Transcript]

Fear Of Addiction Means Chronic Pain Goes Untreated | Health News Florida [Transcript]
http://bit.ly/1iJH9Vs

FDA Warning on Epidural Steroids is Too Little, (7 years) Too Late

FDA Warning on Pain Injections Comes Too Late for Some - Businessweek
http://buswk.co/1n25Qfc

These injections weren't just ill advised, they were/are malpractice. They should NEVER be tried prior to safer, more effective options, like opioids. Greed and Opiophobia are the cause, the cure is knowledge.

FDA Warns about Epidurals

FDA Warns about Epidurals - National Pain Report
http://bit.ly/1iq0mdA

I can't tell you how many people were FORCED into these injections so that crooked doctors could make big money from insurance and avoid prescribing opioids. This NEVER would have been an issue if it wasn't for a combination a Opiophobia and greed/for profit healthcare.

Judge Overturns Massachusetts Ban on Zohydro - National Pain Report

Judge Overturns Massachusetts Ban on Zohydro - National Pain Report

Apparently, I missed this while sick with an eight day stomach bug, but in case you've missed it Zohydro AND compounded hydrocodone are both available in Massachusetts. The judge set a powerful precedent, and I'd personally thank her for using her brain and not giving in to opiophobic propaganda and paranoia.

Drug Maker Seeks to Block Ban on Zohydro - National Pain Report

Drug Maker Seeks to Block Ban on Zohydro - National Pain Report
http://bit.ly/1ivz8zc

I know that Zogenix will get a lot of crap from the anti-opioid lobby (aka rehab business) for this, but I'm glad that they're protecting Massachusetts CP/IP patients and challenging this drastic overreach.

Steve

FDA: Naloxone Injector Not Just for Drug Abusers - National Pain Report

FDA: Naloxone Injector Not Just for Drug Abusers - National Pain Report

http://bit.ly/1kEtGLQ

This is SCARY! This device would be scary enough, but to advocate its use on pain patients is somewhere between malpractice & medical terrorism. Instead of reposting my thoughts here, I've included the comments that say it all.

Even if unconscious, it is illegal to administer naloxone unless you are a doctor or an EMT being actively advised by a physician. I doubt that these laypeople will bother along for consent. Without significantly training (like the REMS programs for Accutane & Xyrem), this is scary.

Why was this rushed through approval?

~~~~~
Kurt says:
April 4, 2014 at 7:14 pm
I guess I need a new Medic Alert tab for my necklace in case I faint the next time I am in Safeways shopping for dinner, and succumb to shock over the high prices they’re charging these days for a pound of hamburger.

I am a chronic pain patient maintained on opiates.

DO NOT INJECT WITH NALOXONE. I am opiate tolerant and not likely to overdose on opiates. Naloxone could put me into immediate opiate withdrawal causing a health crisis.

Lord keep us safe from do-gooders.

~~~~~~~~~~~~~~~
Steve says:
April 7, 2014 at 6:36 pm

Exactly, Kurt! Thank you!...

[trimmed]

...I’m considering a permanent tattoo claiming allergy to naloxone. I already have a DNR refusing naloxone, but where I live DNRs are ignored in the prehospital setting (ambulance, etcetera), which is why I’m thinking about the allergy tattoo, I’d love your thoughts.

~~~~~~~~~~~~~~~
Steve says:

April 7, 2014 at 6:29 pm
Naloxone only reverses opioids, but the vast majority of overdose deaths are not opioid only, they usually involve alcohol and/or benzodiazepines (Valium/diazepam, Xanax/alprazolam, Ativan/lorazepam, etcetera)

This is deeply rooted in opiophobia.

Also, of they really wanted to help people, it would be OTC or OTC worth log book (like pseudoephedrine/Sudafed), but then they wouldn’t benefit from Rx insurance reimbursement. This should be “Pharmacy Only Medicine”, like Imitrex in the UK, where you don’t need a doctor’s prescription, just counseling with the pharmacist (slightly more restricted than Sudafed because training should be required).

This product is used to COMPLETELY reverse opioids, which is fine for an opioid-naive overdose, but would kill an opioid tolerant IP patients like myself. Without dose control, it could kill. Without dose control, I’d imagine most Heroin addicts will refuse a dose because every documentary that I’ve seen involves a human going around with naloxone and they always have trouble convincing these people to take the naloxone. They frequently convince them to take half of a dose.

Pain patients rarely overdose. Family members who can’t mind their own business and don’t know ANYTHING about opioids will abuse this and/or abuse their pain patient family members.

This is all about money, generic naloxone is ~$0.50/dose

Steve

Medication Jeopardy - National Pain Report

A Pained Life: Medication Jeopardy - National Pain Report

http://bit.ly/1lGjvrJ

"I was concerned about being able to get methadone when I returned home to New York City.

“My mentor is there. He’ll give you the prescriptions. Don’t worry,” Friedman said.

Unfortunately, he was wrong.

When I told the doctor, “Dr. Friedman told me you would write the methadone prescriptions for me,” he stood up, said he would not, ended the appointment, and sent me on my way – with no prescription or instructions about stopping the drug."

My comments:
~~~~~ Comment #1 ~~~~~
I was cold turkeyed from methadone (although I had oxycodone, which helped with the mu-opioid activity, but not kappa-opioid or NMDA).

Methadone it's cheap and effective, but it is also misunderstood because of a few overdoses caused by uneducated physicians. Methadone should NEVER be increased more than once every 5-7 days. Other opioids can be increased every few days or even every few hours. If a doctor increases methadone as often as they increase oxycodone, oxymorphone, morphine, or fentanyl, the patient could overdose.

There is a irrational fear surrounding methadone and because it is about $10/month, there's no incentive for drug companies to spend money dispelling those myths. Some brand name drug companies will scare doctors away from methadone to boost sales of OxyContin (oxycodone ER - major culprit), Kadian (12 hr morphine ER), Avinza (24 hour morphine ER), Exalgo (24 hr hydromorphone ER), Opana ER (oxymorphone ER), and, now, Zohydro (12 hr hydrocodone ER).
Sorry, I don't mean to sound like a conspiracy theorist.

Duragesic/fentanyl patches 400mcg/hr have no effect on my neuropathic leg pain, but low dose methadone (even 5mg/day) can have huge effects.

Methadone is uniquely effective because it it's not a pure mu-opioid (like morphine, oxycodone, fentanyl, sufentanil, alfentanil/Alfenta, oxymorphone, hydrocodone, hydromorphone, codeine, and remifentanil). Methadone is a mu-opioid, but it's also a kappa-opioid, an NMDA receptor antagonist. Methadone is ideal for nerve pain, but it is also effective for back pain and cancer pain.

Steve
~~~~~end~~~~~

~~~~~ Comment # 2 ~~~~~
Robert is correct, this is medical malpractice.

Untreated and under treated intractable pain can and do kill, usually through cardiac over-stimulation and various changes in the cardiac, pituitary, and adrenal systems. Dr. Forest Tennant explains it best in 'The Intractable Pain Patients' Handbook for Survival', which is (legally) available for free.

http://bit.ly/PainGuidePDF

Dennis is correct, pain patients need to be given a voice among those who regulate pain treatment. To those who lost kids, I'm sorry, but you kids was an addict who broke the law and took powerful medications without any regard for the directions.  These kids toss random points in a "candy dish" and swallow handfuls, you can't regulate that kind of stupidity. We pain patients are completely different from the drug abusers who make our lives hell.
~~~~~end~~~~~

Steve

Massachusetts Ban on Zohydro a Slippery Slope - National Pain Report

Massachusetts Ban on Zohydro a Slippery Slope - National Pain Report

http://bit.ly/1fMfcGq

Overcoming Opiophobia & Doing Opioids Right

Pain-Topics.org has removed or moved Overcoming Opiophobia from its server, so bit.ly/Opiophobia is now a dead link. Bit.ly will not allow me to change the url that bit.ly/Opiophobia points to, but since bit.ly links are case sensitive I have created a new mini-URL to link to the file using a permanent Google Docs file. Overcoming Opiophobia is now available via http://bit.ly/opiophobia

I apologize for want confusion that this has caused.

Steve