Hacker News new | ask | show | jobs
by bpaddock 2462 days ago
My wife killed herself because of Chronic Pain. Her saga is required reading at Duke Medical School and has become part of the documentary Pain Warriors, to be released soon. The documentary covers the lives of those miss treated by the Medial Establishment, including doctors that treat Chronic Pain.

Those with Chronic Pain are being left to suffer because of abusers. In April of 2019 the CDC stated that their "guidelines" are being miss applied. Sadly the damage is already done.

https://www.cdc.gov/media/releases/2019/s0424-advises-misapp...

"CDC Advises Against Misapplication of the Guideline for Prescribing Opioids for Chronic Pain Some policies, practices attributed to the Guideline are inconsistent with its recommendations.

In a new commentary in the New England Journal of Medicine (NEJM), authors of the 2016 CDC Guideline for Prescribing Opioids for Chronic Pain (Guideline) advise against misapplication of the Guideline that can risk patient health and safety.

CDC commends efforts by healthcare providers and systems, quality improvement organizations, payers, and states to improve opioid prescribing and reduce opioid misuse and overdose. However, some policies and practices that cite the Guideline are inconsistent with, and go beyond, its recommendations. In the NEJM commentary, the authors outline examples of misapplication of the Guideline, and highlight advice from the Guideline that is sometimes overlooked but is critical for safe and effective implementation of the recommendations.

CDC is raising awareness about the following issues that could put patients at risk:..."

6 comments

Thank you for sharing this.

Someone I love has chronic pain managed with (legally prescribed) opioids, and they have constant low-level anxiety that a bureaucratic mixup will result in their medication being denied (or heaven forbid they lose a prescription, or that they'll need a refill when their doctor is on vacation and the locum will be 'suspicious of drug seeking behavior'.

They had to sign a document that if they lost a prescription, they understood that they would be denied a refill, even though (a) there isn't actually any reason to physically hand them the piece of paper, it could all be done between the doctor and pharmacy, and (b) people with chronic pain typically also exhibit various degrees of 'being distracted' due to that same pain.

I could go on, and TBH, my friend hasn't had any gaps in getting their medication, but the current wave of anti-opioid hysteria is concerning.

"current wave of anti-opioid hysteria is concerning"

This is not the media's fault, nor is this is not chronic pain patients' faults. This is the result of criminal corruption and abuse in the pharmaceutical industry and distribution system. There is a real and enormous problem https://www.drugabuse.gov/related-topics/trends-statistics/o... (opioid overdose death rates have more than quadrupled in 20 years, are at a high level already versus other causes of death at 50k annually, and are accelerating). Opioids are some of the most dangerously addictive medicines that exist, and habituation and pill selling is a huge problem that is also ruining and ultimately costing lives.

The death rate from prescription opiates has not budged since 2006[1]. The vast majority of opiate overdoses in America are not prescription opiates, but illicit fentanyl, and to a lesser extent heroin and methadone. Nor do chronic pain patients face any major risk of overdose. The fatal overdose mortality rate for long-term opiate-prescribed patients is 17 per 100,000[2]. And that number doesn't exclude the subset of the population engaged in abusive behavior like mixing with alcohol, snorting pills, or hoarding medication.

Finally the sizable majority of prescription drug abusers in this country do not source from a doctor or the healthcare system at all. The vast majority get their drugs either from the black market or a friend or relative. On the National Drug Use Survey only 18% of prescription drug abusers report doctors as their primary source. And among street prostitutes (a high at-risk group) only 5%[3].

All of this goes to show that there is very little evidence of any sort of over-prescription of opiates in America. To begin with the vast majority of the opiate crisis has to do with fentanyl, not prescription drugs. But even when it comes to prescription drug abuse, the intersection with medical users is vanishingly small.

[1] https://www.ncbi.nlm.nih.gov/pubmed/18489635 [2] http://www.ncsl.org/portals/1/documents/health/APeeples0118_... [3] http://sci-hub.tw/https://www.tandfonline.com/doi/abs/10.108...

You seem to have somewhat missed the point.

You are correct that chronic pain patients are not a high overdose risk and that there is little to no benefit to treating their prescriptions with suspicion. (People who don't have to operate in a black market are MUCH safer.)

Here is here you go wrong:

> All of this goes to show that there is very little evidence of any sort of over-prescription of opiates in America.

There is very clear evidence for over-prescription of opioids. There is very clear evidence that the risks of addiction were deliberately minimized by drug companies and doctors were incentivized to over-prescribe for as many off-label uses as possible.

The issue is: Anyone who does develop a problematic addiction to pill they are prescribed tends to have their access cut off and are thus forced into the black market where their chances of overdose increase dramatically.

Thus while users with drug prescriptions may not be overdosing at high rates, that does NOT mean that the black market overdoses are not directly causally related to the over-prescription of opioids.

> Finally the sizable majority of prescription drug abusers in this country do not source from a doctor or the healthcare system at all. The vast majority get their drugs either from the black market or a friend or relative.

They may not source directly from the healthcare system, but prescription diversion and fraud do indirectly source a lot of product from the the healthcare system. I suspect that crackdowns on this diversion helped spike the blackmarket opiod overdoses as it decreased the quality of the blackmarket supply (and thus increased the prevalence of Fentanyl.)

>All of this goes to show that there is very little evidence of any sort of over-prescription of opiates in America.

Ridiculous. It certainly does not, in any way, shape or form. Your "analysis" also excludes the very clear evidence that people get hooked on opioids from prescription pills and transition to black market products like fentanyl.

"The volumes of the pills handled by the companies climbed as the epidemic surged, increasing 51 percent from 8.4 billion in 2006 to 12.6 billion in 2012. By contrast, doses of morphine, a well-known treatment for severe pain, averaged slightly more than 500 million a year during the same period." https://www.washingtonpost.com/investigations/six-takeaways-...

Only 0.19% of opiate-treated chronic pain patients without a prior history develop any form of abuse or addiction[1]. And remember these are chronic-pain patients who take tolerance-escalating doses over years or even decades. Virtually no one develops an opiate addiction from following their medically prescribed treatment regiment.

[1] https://www.ncbi.nlm.nih.gov/pubmed/18489635

>Virtually no one develops an opiate addiction from following their medically prescribed treatment regiment.

Completely false. You refer to data about a subsection of opioid prescriptions (chronic pain patients), and asserting broad claims that are not accurate.

"In just 10 months, the sixth-largest company in America shipped more than 3 million prescription opioids — nearly 10,000 pills a day on average — to a single pharmacy in a Southern West Virginia town with only 400 residents, according to a congressional report released Wednesday."

https://www.wvgazettemail.com/news/health/drug-firm-poured-m...

There are no statistics that show properly prescribed and taken opioids have anything to do with the crisis. The crisis comes from illegal usage and tainted substances. Sadly this is not clear from the statistics without digging into them, and few do.

That prescription opioids are significantly reduced, yet the death rate continues to climb indicates the focus on the current solution is in the wrong place.

No one, including me, denies "pill selling" is a problem. However that has zero to do with the people with Chronic Pain that are doing everything within the law.

There are bad doctors, and other bad actors, they need dealt with of course. Not at the expense that need such medication.

>That prescription opioids are significantly reduced, yet the death rate continues to climb indicates the focus on the current solution is in the wrong place.

False. There has only been a minor reduction in sales. https://www.fda.gov/media/111695/download

Also, it just means those easy pain pill scripts are drying up, and people are turning to black market alternatives. It's cheaper and easier to import fentanyl from PRC and press it. Also leads to dosing errors (overwhelming cause of deaths).

> The crisis comes from illegal usage and tainted substances. Sadly this is not clear from the statistics without digging into them, and few do.

The crisis was directly contributed by over-prescription ande the deliberate minimization of addiction risks. The crisis was exacerbated by then pushing these people off their legal prescription once they become addicted, forcing them into the black market.

> That prescription opioids are significantly reduced, yet the death rate continues to climb indicates the focus on the current solution is in the wrong place.

When you push more people into the black market, it is reasonable to expect that over-doses will rise.

> There are bad doctors, and other bad actors, they need dealt with of course. Not at the expense that need such medication

Yes, I agree. We are much better served by educating about and being aware of addiction risks than we are by limiting access to prescription medication because we are concerned a person is already addicted.

'hysteria' is the key word here. A blanket ban on more than 7 days of opioid medication is a hysterical reaction to the current problem. Sure, root out the corruption. Blame people and companies and even put people in jail if you think it will help. But in the meantime, it saves lives.

Also, as long as we're here, the reason pill-selling and whatnot exists is because of the war on drugs. But that's a larger discussion than what I/we can do here.

The fault belongs to the enforcement and the enforcement alone. No matter how extreme the criminals they still control their own actions. They cannot be allowed to pass the buck of their collateral damage for that lets them ignore their contribution entirely.
I fight this urge every day because of pain and have great empathy for both you and your wife. I was left in constant pain by badly done and, ultimately unneeded surgery. I have been off and on medication for many years now and have fought the system the entire time. I was recently cut off again after a long term doctor retired and the new options are all fairly hostile to pain patients.

The thing that is the hardest is that ultimately the best pain control for me is a safe and calm lifestyle and decent healthcare in the right conditions I can survive without medication, but with the loss of health and money goes your access to that lifestyle and healthcare, increasing the need for meds, at a time and situation in which you can least get them. I've tried nearly everything, at least that I can access, and that access, mainstream and alternative just gets worse here in the USA. I just need a small flat and a simple life in a city with connections and resources. I am stuck in the opposite.

I had a great, once in a lifetime, accomodative job opportunity abroad from a member here that I couldn't get to because of worsening pain and life stability and I sunk further as a result. Should have just gone and failed and gotten it over with rather than suffering more in worse conditions. It's a pit of quicksand once you get in it. It's hard enough in countries with good systems, but in the USA it's hopeless. I am now stuck in rural nowhere in so much pain with no good healthcare and transport and a horrid quality of life. I am over the debate and the "opiod crisis" and people's judgement here...I just want out and stable if thats even possible anymore, or it over. Tired of suffering every day.

Many underserved chronic pain patients are turning to growing their own, seed tea, and kratom. Might still be able to find decorative dried pods as well.

Dextromethorphan and grapefruit juice can potentiate to stretch out doses in times of drought.

Sorry to hear that our medical system is failing you. Truly immoral.

The FDA is on a Kratom witch hunt now. Must remove anything that helps people.

https://www.fda.gov/news-events/public-health-focus/fda-and-...

Yes, as can all opioids (or drugs in general). Biologicals are particularly challenging in this regard as potency can vary wildly. From what I've read, the people who use this regularly try to make very large batches to standardize and then titrate up slowly with every batch. It seems the son in that link was used to taking huge amount of washed seeds and then got an unwashed batch - so in a sad ironic way, the company's attempts to keep people from getting high led to his death.

Definitely risky, and not something I'd ever suggest for recreational purposes. Also important to know that many opiate tests look for non-intoxicating metabolites that are directly available in the poppy, so doctors may overestimate the amount of morphine the individual consumed: leading to overprescription in replacement therapies or overdose treatments, both of which can be dangerous.

The US solution to this problem is to sue to the surgeon and retire from the settlement
I didn't downvote you. I tried to sue after hearing from multiple doctors abroad how badly it was done and how I never needed it, but it's not like people think from TV and "common knowledge". It's hard to win malpractice. Most cases are not frivolous but people think they are all money grabs. The doctors and their insurance companies do things like insulate surgery centers in friendly counties and under special business arrangements etc. There are small caps and extremely short statutes of limitations on many things. Even if I had won 100%, which rarely happens according to the lawyers, after all was said and done I might have gotten 10,000usd max...and that's nothing for taking away a future. People don't understand the reality of medical errors and malpractice. Patients always lose.
A friend's wife underwent brain surgery ~8 years ago. She was prescribed pain medication for a long while.

At some point, she realized that she may be developing a bit of a pill problem. She went to her doctor, to see what could be worked out.

He listened her out, marked her down as drug-seeking, and cut her off, cold turkey.

Surprise, fucking surprise, the very next thing she did was to turn to black market oxy.

Eight years of rehab, rehab again, fighting, bargaining, threatening, and pleading, she's once again relapsed, and their marriage is falling apart.

I speculate that if it does, she'll likely be dead in a few years.

Doctors aren't allowed to help people to recover from drug dependencies. If a doctor opens a clinic that gives people access to non contaminated drugs with a dosage that is controlled by a trained professional then it will be shut down because people get jealous that their tax money is spent on keeping junkies "high" when in reality the dosage gets lowered successively until no adverse health effects remain and the "high" almost completely disappears but still satisfies the dependency enough to prevent them from seeking out black market drugs. What most of the population also fails to realize is that the health effects of black market drugs are almost trivial compared to the financial damage they cause which has a far greater impact on the lifestyle of that person. You don't become a criminal or a prostitute when you spend $50 on "medication", but it's pretty much guaranteed when your "medication" costs you $1000 per month. For most people that's the difference between being homeless or not.
I've been through that over and over with doctors turning hostile and outright lying and am going through it again now after the worst year I have ever had pain wise. I never took a LOT by any measure, in fact very small doses just to get by, and only about half of the days in any given year as I cycled off and when situations were calmer. I have avoided seeking stronger things offline and will off myself before going there as its costly in every way and has no good outcome. I have a sensitive corpus it seems and can't take a lot of any medication, a built defense against massive addiction I am thankful for in a way, or else I probably would have ended up like some of the worst victims in a gutter using heroin. But I guess in the end what does it matter if you cannot get better anyway. Ultimately people just want to stop hurting and don't care about people's politics...and when it gets like this, and doctors and society and families are so hostile and blaming, the only plausible thing becomes stopping the existence that hurts.
The whole situation is already the product of too much left-brain imperative thinking, but I have to wonder if a basic suit for medical malpractice would have legs. The doctor in question essentially got her physically addicted, and then when told of the symptoms, unilaterally chose a wildly inappropriate "treatment" which exacerbated that addiction.
Dr Myles Gart wrote a piece entitled “Pain is not the fifth vital sign” Medical Economics on May 20th, 2017.

http://medicaleconomics.modernmedicine.com/medical-economics...

This is my reply to Dr Gart's editorial, edited to fit the format here the best I can.

“… First and foremost, we must bury the claim of pain being the fifth vital sign and replace it with a 21st Century pain assessment tool that incorporates objective evidence and measures of pain. …”

Dr Gart, at this moment are you hungry? In your lifetime have you ever been hungry? Hunger is a type of pain. Did you treat that pain by consuming a substance?

Please correct me if I am wrong. To my knowledge there is no objective test, no simple Pain Meter, that will show me that you are hungry. Yes we could look at enzymes and such. Will that truly tell me just how hungry you are objectively?

If there is no objective test for a pain as simple as hunger, that each of us experience most every day, what hope does a person in Chronic Pain have?

In Ohio the Governor is now practicing medicine by decreeing that there can be no more than seven days of opiate pain medication. Perhaps he should discuss that with the person that was hit by a train and survived with most every bone broken.

My wife Karen died of suicide to stop the pain she experienced for over over 20 years, due to the failure of the Medical Establishment as a whole. THIS IS THE REALITY OF Chronic Pain.

"Karen's Journal of CSF Leak Headaches and Chronic Pain: How Intracranial Hypotension and Levaquin (Levofloxacin) Killed Me"

is now required reading at Duke School of Medicine to educate future Neurologists about the realities of Chronic Pain.

A local reporter wrote in a Cover Story:

"Karen's first-hand account of her illness gave an honest, heart-wrenching depiction of what it is like to live with debilitating pain day-to-day." – http://www.kpaddock.org

May I humbly suggest you read it.

See for FDA links on the antibiotic issue [at http://www.kpaddock.com/fq ].

In book form it has been edited by a medical doctor that has the same condition has Karen had. When bought through the Spinal CSF Leak Foundation 100% of the royalties go to them, to support them, just in case anyone thinks I'm posting this to promote the book for profit myself. The book can be read for free at http://mystory.kpaddock.com for free.

I do not know what motivated you to write your article. I do know from it that far more time needs to be spent with people in Chronic Pain, to understand the realities of their life.

When a person in Chronic Pain that has been taking opiate pain medication under a competent doctors supervision for ten years, is able to function, take care of their family, hold a job, is without warning told then can not have it any more, “tough luck”. What are they to do? They resort to street drugs and become the very victims this currently policy is trying to prevent.

People in Chronic Pain have typically already tried multiple rounds of physical therapy, bio-feedback, meditation, exercise and the list goes on, with no relief from the pain. What are they to do?

Not having Chronic Pain myself, I will never claim to understand it. I did watch my wife suffer with it for 20+ years. What exactly is the agenda here? None of us such as Advocates like myself nor the sufferers have figured this out yet. Can anyone please explain? To us it appears as an attack on the most vulnerable.

This is one of the many comments I received about your article: “…Chronic problems frustrate doctors and they blame the patient rather than look at themselves. …” or support research to find real solutions to Chronic Pain. No one chooses to live with Chronic Pain each and every moment of their lives.

> Dr Gart, at this moment are you hungry? In your lifetime have you ever been hungry? Hunger is a type of pain. Did you treat that pain by consuming a substance?

If you don't eat you die. Do you die if you don't consumer pain killers? No you don't.

This is similar to the nonsense peddled by people who claim anti-depressants are the same as insulin and various other snake-oil salespeople.

Have you ever suffered constant pain, of the sort where you really can't think of anything else? I have been fortunate to have such events rarely, and then in spans measured in hours. But the intensity is enough to give me a notion of what others have gone through. The people I know who have used heavy-duty pain killers have not wanted to get stoned--one in particular despised the fuzzy feeling--they have wanted to function.
It's a losing game putting out reasonable arguments as to why this hysteria is bad.

Some people want to control others and just don't care what the reality is.

They would never ban alcohol, they consume it.

They would never ban cars; they drive them.

They would never ban fast food; they eat it.

They will never ban sugar; they love it.

All of these things have cause a million times more misery than opioids ever have, by all measurable statistics (deaths, injury, domestic violence, etc)

But if there is something someone is doing that they aren't, their measurement of pros and cons will change. Statistics and comparable things of pleasure/damage will never be considered.

> But if there is something someone is doing that they aren't, their measurement of pros and cons will change. Statistics and comparable things of pleasure/damage will never be considered.

HN is also guilty of this in otver contexts.

I think we are all guilty of this to a degree. We all measure risk/reward differently when the risk is perceived to be on our side and the reward on the other side.

The issue with perception is universal. We all feel these things.

How we act though? That's a choice. We can choose to read statistics and let our 'slow thinking' brain take over. But it has to be a choice and that lies with each of us.

> Do you die if you don't consumer pain killers? No you don't.

Do you notice you are replying to a comment about somebody that did, right?

Not every problem is simple.

The comment above clearly stated that someone died of pain.

Your refusal to believe that illnesses can affect the brain is obsolete thinking.

You may commit suicide, though.
*die of suicide, as a side effect of chronic unrelievable pain
The solution for chronic pain is to prescribe opiates on an ongoing basis. The solution for addiction is to prescribe opiates on an ongoing basis. That might be methadone or suboxone or something more common like oxycodone or morphine. What happened to your wife should never have happened. It's tragic that incompetent organizations like the CDC and others still haven't realized this and are driven by unscientific drug war hysteria rather than scientific approaches to recovery. Not only do addicts suffer, but chronic pain sufferers also suffer. Often there is no difference between the two groups.
I am sorry for your loss.