PAIN REFUGEE STATISTICS
Comments on the tragedy and facts for writers and journalists
by JATH EDUCATIONAL CONSORTIUM, LLC **
Thomas F Kline MD, PhD
David John Williams, Jaime James Sanchez, Carolyn M. Concia, NP, Editing and Research
Raleigh, North Carolina 27613
Revised November 2019
A We are presenting facts for the first time. Fear of Addiction Phobia is not based on fact.
We at JATH are watching with horror as an estimated 4000 people per day are cruelly cut off of effective pain suppression medicines without consent, per week.
We have never seen or heard of a health care crisis of this magnitude. I could never have imagined this happening in the United States of America: forced of safe effective medication without a medical reason?
JATH Educational Consortium LLC estimates 5–7 million people of the risk of 10 million with rare painful diseases have been forced off life saving opiate treatment for no reason other than “I don’t want to lose my license, or be arrested and jailed like my collagues”.
Seventy percent of us doctors have quit writing pain medicine prescription as we did in 1920’s and 1930’s when we were jailed by the federal narcotics squads treating addicts overruling law. This is happening today with the newly made up crime of “overprescribing” what ever that means. It is like “over prosecuting” needs a reference point and definition. Doctors sit in jail accused of this.
The opioid crisis has nothing to do with office pain patients with rare painful disease disorders. Cardiac disease needs cardiac medication. Painful disease needs pain medication. If everyone treated with opiates were to eventually become addicted half the country would be shooting up behind dumpsters
On March 15, 2016 the CDC issued the “Guideline for Prescription of Opioids for Chronic pain” which started the cascade of disenfranchisement of potentially millions of legitimate innocent patients with very nasty painful rare diseases at an estimated rate of 4000 a day compared with the CDC 100 per day “ (Heroin)overdose deaths” driving the forced taperings to prevent these deaths.
That doctors caused the “opioid crisis” is a terrible accusation and would need substantial proof before a federal agency would issue such serious statement. To this date they have not provided the needed proof.
Ignoring the need for scientific proof CDC provided the accelerant for the wildfire worsening each day as access to medical care for painful diseases is closing rapidly.
Who are the 10 million government statistics say need daily “opioids” or opiate pain medicine? For the first time this is being defined.The vast majority are people with inherited or developed untreatable rare painful diseases. (see catalogue of rare painful diseases here in Medium)
Fear of Addiction Phobia, a real disease with maladaptive behaviors driven by unsupported irrational fear needs to be addressed before more due. (see Suicides in this Medium)
“Opioid exposure” is kin “satanic exposure”, who knows what will happen. It is the fear of the unpredictable that drives erratic policy with no chance of being effective.
Mass hysteria reminencent has escalated pre-existing prejudices into a destructive mythology harming huge numbers of innocent bystanders.
This national fear is as bad or worse than fears of being possessed by the devil leading to hangings in 1692 of 40 neighbors and one dog. Fear in the 1950’s of communists around every corner, fear in the 1980’s of “crack cocaine dope fiends” killing and raping, and the fear of catching HIV on every toilet seat were fears based lack of facts.
The mass hysteria is really based on the self serving “I don’t want it to happen to me — arrest them, get them away from me before it is too late!”
This heinous policy of opiate pain medicine eradication has led to pain so horrible from rare painful disease that people get together with their families and decide death is the only solution to ending their medical treatment (google “medium suicides”)
CDC may say they didn’t really mean it that way, but they published a “Guideline” that looked very much like a regulation which it is not.
CDC and their opioid avoidance consultants have tried to walk back the idea of forced tapering intended but 3 1/2 years too late. There are people dead from suicide an millions sitting on couches staying in bed all day trying to deal with these horrible diseases without safe effective medicines.
We are presenting facts for the first time. Fear of Addiction Phobia is not based on fact.
The following descriptive data is taken from our twitter polls and presented as a snap shot, not a rigorous academic stratified survey. It is close enough.
There are approximately 30,000 people in the twitter population of chronic and rare painful disease patients. Each of our questions had between 200 and 500 respondents. This information is offered a beginning point. We stand behind the data.
The CDC was tasked by its Scientific Advisers in January 2016 to follow up to see if any unintended consequences were occurring. It has been more than three years. No reports have been seen.
The unintended consequences of destruction of lives and suicide deaths remain unknown due to lack oversight. Until proven otherwise the estimate remains in the millions of American citizens, mainly women. These are people who did nothing to deserve being caught in the crossfire of opioid zealotry.
1. Ten million people in the US need to take daily opiate medication, of the 25.3 million with daily pain lasting longer than three months with 15 million already trying alternatives.
2. Four different surveys, including our own Twitter poll indicate 60–70% of the ten million are being actively tapered off opiate pain regimens without medical reason.
3. When asked why the doctors were tapering for no reason patients reported they were told it was due to the CDC and DEA. (“I cannot lose my license over this, you will need to deal with your pain”)
4. Fifty percent of the ten million with legitimate long term, incurable painful diseases are completely taken off medicines that should never have been taken away in acts of grossly negligent medical care.
5. Half of primary care doctors have quit prescribing opiate pain medicine in the last three years
6. Picking up the slack, pain specialists now bursting at the seams to help those denied access for their disease, are being raided by federal and state drug squads for “having too many patients” which the federal prosecutors call over “overprescribing” , more than any other doctor” — a crime I never heard of. Punished for helping out.
7. This data to follow is informal and should have been obtained by the CDC. But, the obvious is not always an illusion. Reading the stories of 28,000 pain patients makes me believe these informal twitter poles more than likely portray the truth.
These statistics are from those patients who have been tapered down or off their pain medicines:
— 2/3 of patients require more than 90mg Mme per day (CDC never checked if 90mg would work)
(FDA, the rulemaking agency for opiates has not recommended tapering and by law and regulations has no maximum amount or dose)
— Those doing “fine” after the tapering 15%
— negative impact on parenting — 78%
— negative impact on sexuality — 88% (78% stopped having sex altogether)
— negative impact on social activities like PTA, church, civic activities: 57% stopped activities, major reduction 36%, no change 3%
- -“big” problems with relationships — 92%
— weight gain 45%, weight loss 35%, no change 20%
— considered an addict for taking pain medicine- 50% said yes
— Flagged in computers as “drug seekers” — 43%
— agree or disagree with the statement made by opiate opposed doctors that long term opiate medicine is ineffective: 82% disagree
— Percentage of painful disease patients refused medication because they did not have cancer -69%
— Statement by CDC Director Thomas Frieden MD that “doctors are the cause of the opioid epidemic” — 82% disagreed
— Percentage receiving “adequate pain medicines” 17%
- suicide numbers — unknown. CDC is reporting sharp rise in suicides especially in women. About 70% of the population of chronic painful diseases are women, reflecting similar weighting in autoimmune disease. CDC has not reported and data on why the increase in suicides. It must be assumed to be related to pain so great as to make life not a life until proved otherwise. One CDC person interviewed indicated the notion of medication tapering suicides said they were not studying this. Google “medium suicides” for case reports.
— Problems filling their doctors’ prescriptions at the pharmacy -33%
— Major “life changes” — 68%
— Tapered off or down on pain medicines but still doing “ok” 6% 94% worse
— Forced tapering without a say so- 76%
— tapering effects on employment- no change 3%, negative effect 36%, had to quit job 61%
— once tapering was found to increase pain and decrease functioning how many had their original doses restored- — 13%, 76% of practitioners refused to restore to previous effective levels
— Percentage of “doctor shoppers” who are addicts — 40%, percentage who are pain patients -60%
— Percentage of patients currently looking for doctors but cannot find one — — 65% (of ten million presumably)
CDC recommends using alternative, second line treatments first, not a standard medical practice I am familiar with.. Generally we physicians like to treat with the most effective first, back ups if the drug of choice fails. As a result of the stampede to more expensive, higher risk and reduced effectiveness we asked several questions in each poll —
— Back surgery, was it “worth it”? — yes 23% , 77% no
— Neck surgery, was it worth it? — 68% no, 32% yes
— Physical Therapy helped — 10%, PT made it worse 43%
— Alternate medicines worked as well as the opiates: 5% yes, 95% no
— Lyrica — effective in only 8%, noticeable side effects 72%
— Neurontin, side effects in more than half, worked in only 13%
— Spinal Stimulators implanted by surgery, “was it worth it”? — no in 86% (40–50K dollars)
— ketamine infusions — effective in 50%
— Morphine pumps “did it relieve pain”? — 50% yes, 50% no (30–50K dollars plus monthly fees, surgical risks)
— Injection treatments, “would you recommend to others with the same diseases?” 47% said no (high risk of addisonian adrenal suppression and adhesive arachnoiditis, a disastrous lifelong disease)
— Radio frequency ablation, “was it worth doing?” — 79% said no, 21% said yes (extremely painful and expensive procedure)
Most patients are referred to pain clinics. The status of licensing requirements is unknown. People who no longer are treated for their pain by their regular doctors, traditionally the ones who treated pain prior to 2015, who now go to “Pain Clinics” are asked to respond on twitter polls.
Contracts, pill counts, urine-analyses were traditionally reserved for opiate addicts. It is not clear why these methods are forced on the pain patients abandoned by their primary care practitioners. They report the following:
— forced to sign addiction style pain contracts -80% restricting what pharmacies to go to, forced birth control, etc one person committed suicide after an ER relief prescription was refused by the pharmacy due to restrictive pain control (google Medium Suicides)
— numbers reporting good care at the pain clinic- -25%, not so good in 25%, “terrible” care 50%
— Number of pain clinics not prescribing actual pain medication — 25–31%
— Number of pain clinics offering “injections only” — 41%
— Number of pain clinics refusing to prescribe pain medicines until patient agrees to injections first — 34%
— Number of pain clinics prescribing pain medicine according to FDA guidelines- 18%
— Number of patients that were not sent to Pain clinics by their primary care and followed in the office for the pain treatment — 19%, with 63% were “referred out”
— 50% have to pay $100-$300 for each pain clinic visit after insurance pays
— Forced to have addiction type urine tests in spite of no one ever reported to addict already on pain medications with false positive and negative rates leading to discharge from pain clinic and labeling as drug seekers on EHR records damming the patient for ever in receiving pain medication for any reason.
In general painful disease patients are also reporting:
— 34% take both benzodiazepines and opiate with no problems reported in 87%, problems in 13%
— Two percent report benzodiazepines work best to relieve pain, opiates work best 52% and the combination of benzodiazepines and opiates work best in 36%, with neither working in 10%
— Outcomes with opiate pain medicine: 89% reporting “good”
— Numbers of patients in the universe of twitter followers officially disabled from their painful diseases: 53%
— requiring more than 90mg MME for pain control: 63%
These twitter polls were conducted by JATH over the last two years. Many of the polls were validated by other polls outside of JATH. The polls cannot be dismissed by saying they were not properly done. The obvious is not always an illusion. Are these randomly stratified samplings — no. This information is provided to issue an alert.
Opiate drugs have an addiction rate of 0.5% — a major side effect but which can be managed easily if caught early. If each prescriber would merely ask their patients if they have ever had an opiate we would stop new deaths from opiate addiction. With this simple question no more teenagers will die due to ignorance of the pathophysiology of opiate addiction and the different types. There is no such thing as “addiction” or “drug abuse”, but there are types of addiction which are very different and need to be treated differently just as we do with the two types of diabetes.
If the answer to the critical question “ever had a pain killer before” is YES the person will never opiate addict. If the answer is NO they will have < 1% change for genetically determined opiate addiction. The prescriber needs to warn “no” patients to report back if they have other than a sedative effect from the narcotic especially if they “go on a magic carpet ride” If they do, they have opiate addiction disease, type 2. They need not seek out heroin and die. No new cases of addiction need to die. Ninety percent of opiate addiction occurs in teenage years. Why? — First exposure. Opiate addiction differs from other forms of addiction as it is triggered by the hidden propensity for immediate addiction. This is why the news stories report the addiction from the doctors prescription — first exposure, not “substance exposure”.
Thus identified, the patients can be medically treated in the office. Opiate addiction is serious side effect, but it is not fatal like many serious side effects of other prescription drugs. We need to ask more about the facts of the two types of addiction and why they are different. We cannot apply one solution for both. This is where the mistakes have been made, and money wasted for 100 years. We need medical facts, pathophysiological facts before we subject millions of people to the withdrawal of medical treatment without rhyme or reason. It is their choice to take the risks or not take the risks, not the government, not doctors cowed into harming their patients, not the drug police.
Of any new idea, Einstein said that some things are easy to understand but hard to believe. This is offered in that light. I have seen it. Heads are in the sand. A nationwide tragedy is really happening on a scale no one could ever imagine.
Thomas F. Kline MD, Ph.D
Chronic and Rare Disease Specialist
Raleigh, North Carolina
Email: firstname.lastname@example.org Intelligent discussions are welcome
**JATH Educational Consortium LLC is a Raleigh based research group providing unrestricted data to the medical community and the general public for policy making and improvement of medical care