When no one believes you

http://www.painnewsnetwork.org/stories/2016/8/11/prop-ends-affiliation-with-phoenix-house

Like PROP, the foundation’s main goal is to reduce opioid prescribing. It is named after Steve Rummler, a Minnesota pain patient who became addicted to opioid medication while being treated for a back injury.

After several attempts at addiction treatment, Rummler relapsed and died of a heroin overdose at the age of 43.

“He struggled with the pain for a long time,” said Judy Rummler, Steve’s mother and chief financial officer of the foundation. “He had what I think later was figured out to be some damage to the nervous system around his spinal cord because he had what he described as shooting electric shock-like sensations that would shoot up his back into his head and down his legs into his feet.”

Steve sought help from many doctors, but never received a treatable diagnosis. He started taking OxyContin for pain relief. “Once he was prescribed the opioids in 2005, then he didn’t care about getting answers anymore,” his mother said.

After Steve’s death in 2011, the Rummler family established the foundation with the goal of helping others who also struggle with chronic pain and addiction. It was PROP’s founder and chief executive, Andrew Kolodny, MD, who approached the foundation with the idea of joining forces…

“Basically as the fiscal sponsor we accept donations and we manage the funding. We don’t set any policy for him,” Judy Rummler told Pain News Network. “Obviously our missions are similar. We are very concerned about the overprescribing of opioids. Yet I know if my son were alive today he would probably be telling you what you hear from so many other pain patients; that he couldn’t live without them. But the problem was he died as a result of it.

“I know there are a lot of people who are going to be hurt by cutting back on the prescribing, but I just think a lot of them are addicted as my son was. Yet he would have been the first one to scream and yell about having his pills cutoff.”

The Rummler Foundation calls this tug-of-war between opioids and addiction “The Dilemma.” It advocates for wholesale change in the treatment of chronic pain, emphasizing “wellness rather than drugs” and the use of “a wide array of non-opioid options.”

Opioid medication should not be prescribed for chronic pain, according to Rummler…

Poor Steve. So desperate and in so much pain — but he had nowhere to turn for help. He was being treated for addiction, not chronic pain. His chronic pain was ignored, even though it was the constant pain that caused Steve to become addicted to pain relief in the first place.

(Let me just say that I’m not sure Steve was suffering from addiction, but that is what he was being treated for.)

I’m sure that most chronic pain patients understand Steve’s desperation. Personally, I’m beginning to think that desperation is my middle name.

It was his pain (environment) and his DNA that made Steve susceptible to addiction. (DNA, by the way, he got from his parents.) A part of his addiction was probably caused by low self-esteem due to the censure of his loved ones and the shame all drug addicts feel (also his environment). There’s no shame in suffering from cancer, but those who suffer from addiction and chronic pain are weak and morally corrupt — according to the anti-opioid lobby. According to the drug war.

I consider it hypocritical and ignorant when anyone claims there’s no evidence that opioids work for chronic pain. (I also find the medical industry’s use of the word “evidence” to always be suspect. After all, I’m not a mouse. And my intractable pain is as unique as my DNA.) You can’t tell me that opioids don’t work — I took them for 10 years. You can’t tell millions of chronic pain patients that opioids don’t work — they’ve taken them for years, too.

Denying reality has always been helpful when fighting on the side of the drug war. #DenyingReality #ItsAllAboutFear (#DonaldDrumpf)

To all you hypocrites:  How much unbiased “evidence” exists that shows antidepressants or cortisone injections work for chronic pain? Denying adequate treatment for those in constant pain is the definition of torture. So, when someone advocates against the option of opioids to treat chronic pain, then that person is advocating for torture. (It seems there’s a high percentage of masochists within the 200 million people who don’t suffer from chronic pain in this country.)

Grief can motivate a person to do great things, but the reverse is also true. Rich, grieving parents, too blinded by their own pain to see anyone else’s. Like their grief is so raw and overwhelming that it destroys any empathy those people may have had for anyone else. Like their pain is more important than anything else. Like they’re more important than anyone else. (#TrumpSyndrome)

Let’s get this straight: Steve was not your average chronic pain patient. (To learn a little more about Steve’s story, click on the link below.) But, Steve is an example of the suffering that pain patients, who also suffer from drug addiction, go through. If you have a history of drug addiction, no one believes you’re in pain. And I know many chronic pain patients can understand what it feels like when no one believes you.

https://painkills2.wordpress.com/2015/09/22/the-epidemic-of-grief-stricken-parents/

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Dr. Hypocrisy

Here we have another one-sided article from the New York Times, this one about the abuse of drugs used to treat addiction.

http://www.edsinfo.wordpress.com/2016/06/28/addicted-to-a-treatment-for-addiction/

http://www.nytimes.com/2016/05/29/opinion/sunday/addicted-to-a-treatment-for-addiction.html?_r=0

“Let’s be clear,” said Dr. Andrew Kolodny, a longtime Suboxone prescriber in New York and executive director of Physicians for Responsible Opioid Prescribing. “The real crisis is the severe epidemic of opioid addiction and overdose deaths that’s devastating families across the country.”

And here we have Mr. Kolodny, still trying to convince everyone that drugs like Suboxone aren’t part of the opioid family. As if there aren’t any families that have been devastated by deaths related to the use of bupe, methadone, and Suboxone.

It says a lot about how lazy the media is that it uses “experts” like Kolodny. And they never include important facts about Kolodny, like the criminal investigations into some of his Phoenix Houses. Like how Kolodny started his work with addiction in the New York prison system, specifically with bupe.

And before Kolodny began his work in the prison system, in 1996, France approved bupe (Suboxone) for the treatment of addiction. The current situation in France is that, along with methadone, buprenorphine is the opioid that’s causing the most damage:

https://painkills2.wordpress.com/2014/12/02/whats-the-drugopioid-epidemic-look-like-in-france/

Dr. Kolodny ranks anti-Suboxone judges like Judge Moore in a category with climate-change deniers and people who believe vaccines cause autism. “When there’s really dangerous heroin on the streets, I’d rather see Suboxone out there, even if it is being prescribed irresponsibly or is being sold by drug dealers,” he said…

And here we have Mr. Kolodny advocating for the underground Suboxone market, which really makes him look like a drug dealer. I wonder if he gets a percentage of all Suboxone sales… Or maybe he’s been promised a better job with the government or Big Pharma.

Hey, Kolodny, don’t you understand that doctors are drug dealers, too? Do you think the drugs that doctors prescribe never do any damage, never kill anyone? Perhaps you should change your name to Dr. Hypocrisy.

Under comments:

Steven A. King, M.D., Philadelphia, May 29, 2016

The issues of using buprenorphine for opioid use disorders are not as clear cut as the author appears to be making them.

Some of what Judge Moore believes is true and some of what Drs. Volkow and Kolodny say is misleading.

As a physician who specializes in pain management, I know that there are a not insignificant number patients prescribed opioids for legitimate pain complaints who end up abusing and becoming addicted to these, and although it is often reported that we’ve only become recently aware of this in fact there is research going back 25 years demonstrating this.

However, there are no studies showing that either buprenorphine or methadone are appropriate treatments for these patients. As these both provide analgesia equal to the other opioids, if these were the proper treatment for these patients then it would make sense to make them the first line opioids for pain as we would be prescribing the appropriate treatment for the problem at the same time we were prescribing the cause of the problem.

Sorry, bupe and methadone do NOT provide analgesia equal to other opioids. Yes, they help some pain patients, but their strength is more in line with, say, codeine, if that.

I’m not exactly sure what this pain doctor is trying to say, but I think pain patients will increasingly be offered bupe and methadone, whether they’ve been red-flagged for addiction or not.

Et tu, Guardian?

I’m surprised The Guardian published such a one-sided article. It’s like Kolodny from PFROP wrote it himself.

http://www.theguardian.com/us-news/2016/mar/17/cdc-guidelines-against-prescribing-opioids

Under comments:

hang3xc fortetoo 2d ago

They have stopped paying for pain meds too. Everyone I know has had problems since the first of the year. My insurance company (BCBS) had been paying for my pain meds since I got hurt in 1992. Jan 1st 2016 they denied payment. My doctor called and gave them everything they wanted yet they still denied me. Again, this is something I have been stuck with for 24 years, but NOW it is a problem? … As it is, my monthly prescription, which cost $20-$30 per month NOW costs me $250…

No More Shame and Blame

http://www.theguardian.com/society/2016/feb/25/by-understanding-why-people-use-drugs-i-now-know-why-i-dont-use-them

(2/25/2016) Why I don’t use heroin by Chris Arnade

I spent the last five years documenting drug traps in neighborhoods poorer than is decent for such a rich country. I have become close friends with women and men who live under bridges and earn money for heroin by selling themselves for sex. I have bought heroin for them, unable to stand by as their body rejected the lack of drugs. I have provided them with clean needles, water, and a safe space to inject…

I am surrounded by heroin but have never used, because I am not in pain and have it good. I grew up with parents who cared about me and kept me safe, surrounding me with books and toys. I was encouraged, and expected, to finish high school, and to keep learning beyond that. After my education I was lucky to find a job (I was good at thinking in numbers), and was paid well.  The people I met in the drug traps had none of that. Their parents, if around, were too busy with their own problems to keep them safe. Many did far worse, abusing them physically and sexually. If the abuse didn’t come from a parent, it came from an uncle, or the mother’s boyfriend, or a stepbrother, but the abuse almost always came. It was the ultimate betrayal of trust: being raped by men who were supposed to keep them safe.

Their childhoods were spent dealing with problems that would break most adults…

And so drugs are popular, because drugs work. They allow people in pain, whom society has rejected, a way to integrate into a community that does work for them. How much someone uses drugs is often a measure of how much pain they have suffered, how isolated they are…

That in any city or town, across all of America, people live on the streets, shooting up, selling themselves for another bag, should make us all stop and ask ourselves “why does our society create and allow such pain?”.

I never saw Bernice again, she disappeared from the streets, presumably into a rehab, jail, or perhaps she moved to another town. Still, I cannot forget the last thing she said to me, “Why am I using drugs and hustling? Because I am out here trying to kill myself. I want to get a gun and do it faster, but I am too scared to blow my head off.”

Try not to judge people for how they decide to manage their pain. I know that many of these ways are often destructive, like my addiction to cigarettes. I don’t have the looks to be able to sell my body, but I know what desperation and pain can drive a person to do. And if you don’t understand that kind of desperation, then you’re lucky.

According to all of my reading on this subject, most drug addicts are like the ones described in this article. And so I’m wondering about the homes they ran away from, specifically if most drug addicts are from poor neighborhoods. According to the government’s statistics, most heroin addicts are white people from middle-class homes. I’m not sure about the government’s definition of “middle-class,” but I know that most patients who can afford an addiction clinic are usually from the middle-class.

And so I’m wondering, what kind of pain are these middle-class heroin addicts running from? I’ve been comparing the current heroin “epidemic” to the drug epidemics of the past, specifically in the middle-class. It seems like boredom is one of the reasons for drug use in the upper classes, and I suppose we can also blame the immaturity of young brains.

I used to think I was in the middle-class, perhaps lower middle-class. It’s hard to remember every day of my life, but I don’t think I’ve ever been offered heroin. I don’t know what kind of crowd you have to hang out with to be exposed to drugs like that, but I’m guessing it’s people with a lot more money than I’ve ever had. And perhaps, also, people with a lot less than I have.

I can see why a lot of parents blame legal drugs and drug dealers (I mean, doctors). Who else is left to blame? There are many people who believe that parents are to blame when children do things like take drugs. But parents who don’t take drugs also have children who do, and vice versa, so I think the blame falls more on our DNA (along with the types of drugs that one is exposed to). And yet, there’s all this violence, abuse, rape, and bullying, that contributes to drug addiction…

Does the white middle-class really want to stop the heroin “epidemic”? Does it really want to delve into the reasons for addiction? Abuse and violence are already against the law, yet that hasn’t stopped drug use and abuse. The drug war hasn’t stopped it either.

People abuse sex, just like they abuse drugs. In the past, most people felt that unmarried women having babies was shameful (only for the woman, of course). People used to think that women who took the pill were sluts. One day, our society will progress to the point of not shaming those who use drugs, for whatever reason.

DSC01559 (5)

Thinking of you, Bernice.

Title fight: Big Pharma vs. The Feds

http://bigstory.ap.org/article/765439c771b649a7b6940fda87595735/effort-curb-painkiller-prescribing-faces-stiff-opposition

But industry-funded groups like the U.S. Pain Foundation and the American Academy of Pain Management warn that the CDC guidelines could block patient access to medications if adopted by state health systems, insurers and hospitals. Such organizations often look to the federal government for health care policies.

“Could block patient access”?  When will everyone else join pain patients in the real world? Patient access has already been blocked, patients have been abandoned by doctors, and these groups are still saying this “could” happen?

Which is better, groups funded by industry or those funded by the federal government? What about all of the people who don’t have the funds to pay for representation?

The CDC decision to delay its guidelines followed months of lobbying by physician and patient groups aligned with the pharmaceutical industry, who have almost always had a seat at the table in federal discussions on painkillers. As a result, they have had far more influence over federal policy than addiction activists, according to experts.

I can report that there are millions and millions of pain patients who are not “aligned” with anyone; do not have a seat at any table for discussions on painkillers; and have absolutely no influence whatsoever over federal policy. I can also report that there are thousands of drug addicts who similarly have no voice in this fight.

“They’re very well-funded and they have a lot of pharma money behind them,” said Dr. Lewis Nelson of New York University, an FDA adviser who is also advising the CDC on its guidelines. “And then you have the anti-addiction groups on the other side, which is clearly much less funded and organized.”

It’s funny how some people — usually those sitting in a seat of privilege — live in a bubble of their own made-up reality. Since Big Pharma funds both sides of this issue, and the federal government only funds the anti-drug side, which side is clearly better funded? And which side does the media report on?

CDC’s Frieden says more Americans are “primed” for heroin use because of their exposure to painkillers.

I call bullshit. There are hundreds of millions of Americans who have been exposed to painkillers with no problems whatsoever.

The CDC had not publicly disclosed the panel’s membership, but Twillman and other pain advocates identified several members, including two who are leaders with Physicians for Responsible Opioid Prescribing, a group working to reduce painkiller prescribing. That group is backed by Phoenix House, a network of rehabilitation clinics.

Also backed by the federal government, along with anonymous, right-wing, private donors (like ALEC  and the prison industry).

My comment:

I want to thank the AP for not describing Mr. Kolodny from PFROP as some kind of expert on pain management (as many other media outlets have done). Unfortunately, I can’t thank the AP for its biased reporting on these issues.

As a 30-year intractable pain survivor, I’m sad to say that my voice isn’t a part of the media’s reporting on the opioid war. But what’s really tragic are the millions of pain patients who also have no voice (or a seat at any table), silently suffering and fueling a suicide epidemic that everyone refuses to talk about. Because when up to three times as many people die by suicide every day than by drug overdose — and all the CDC (and the media) can talk about is how doctors are over-treating pain — then something is terribly wrong. Maybe one day, someone will figure out how to report on the difference between tens of millions of pain patients, and the thousands of patients who suffer from drug addiction. (And maybe one day, the word “epidemic” will have meaning again.)

Since I was able to recover from my addiction to the medical industry, I can only hope that other pain patients are able to do the same. I was very lucky to survive this addiction, but there will be many who do not. While almost everyone blames suicide on the victim, my own experiences have shown me that the blame doesn’t belong there. In fact, agencies like the CDC and DEA should be held accountable for every pain patient who chooses suicide as a last resort to manage their pain, and for every pain patient who ends up in jail for being forced to turn to the underground drug market.

Thinking of you, Martin Szczupak

http://www.reuters.com/article/2015/09/02/us-usa-rehab-phoenixhouse-specialreport-idUSKCN0R21PY20150902

(9/2/2015) Special Report: Renowned U.S. drug-rehab program spun out of control

Martin Szczupak had already been in and out of rehab when, for a misdemeanor possession charge, a judge sent the 21-year-old heroin addict to a century-old estate in the wooded hills of upstate New York for another chance to clean up…

By December 2012, he had given up on the treatment program. He felt he would be stuck going from “dead end job and rehab and jail until I eventually drop dead,” he wrote in a letter to his fiancée. “You deserve better than that.” He didn’t want to use drugs anymore, he wrote, “but realistically the odds are against me.”

Szczupak never sent the letter. Three weeks later, he walked out of Belle Terre without permission. One day after that, police visited Szczupak’s mother, Inez, at her Staten Island home to tell her that her son had been found dead from a drug overdose…

In 2012, the U.S. criminal justice system sent 580,000 people to drug treatment…

At Belle Terre, criminal-justice referrals account for the majority of residents. The facility is run by Phoenix Houses of New York, whose parent foundation is one of the nation’s largest drug treatment nonprofits, operating in 10 states and the District of Columbia. In the year ended June 20, 2014, the Phoenix House Foundation and its affiliates reported operating revenue of $141 million.

Phoenix Houses of New York is 95 percent publicly funded and enjoys star-studded endorsements. Beyonce donated a cosmetology center at a Brooklyn facility. Financier Pete Peterson chaired a summer fundraiser in 2013 in the posh Hamptons on New York’s Long Island…

The closures that preceded Szczupak’s arrival weren’t the last. And nor is Belle Terre an anomaly. In November last year, OASAS suspended admissions to Belle Terre and four other Phoenix Houses of New York facilities. In a letter to Phoenix House’s then-chief executive in November 2014, OASAS said Phoenix House had “persistent regulatory violations and resident/patient care concerns dating back several years.”

An OASAS site report on the five facilities went into graphic detail. The regulator’s findings at some or all of the facilities included use of marijuana, cocaine, heroin and other illegal drugs; sexual activity among residents; reports of violence and sexual assault; insufficient, inadequately trained or abusive staff; dirty premises; and lax security, with residents coming and going as they wished…

In November 2014, regulators again suspended admissions at Belle Terre, as well as four other Phoenix House facilities. State regulators noted high staff turnover and need for improved clinical practices at Belle Terre. They also warned the facility to let clients speak to their attorneys without staff present.

OASAS let Belle Terre reopen in January 2015. Three of the other centers were reopened with limited admissions in late 2014 and early 2015. The Shrub Oak teen residential treatment facility was closed permanently in June 2015.

In March, OASAS inspected Belle Terre again, prompted by unspecified complaints against director Alan Hargrove, OASAS reported. Phoenix House then fired Hargrove, based on OASAS’s feedback.

Hargrove declined to comment.

Phoenix House announced on Aug. 19 it would be closing Belle Terre and the 185th Street facility…

Perhaps Mr. Kolodny should attend to his own affairs, instead of fighting the war against pain patients.