Living with Pain: Prejudice and Mistreatment

Living with Pain: Prejudice and Mistreatment

There is a steady and continuing drum beat in the press and from researchers and commentators warning of the dangers connected to prescribing and using opioid pain medicine. In this mix are the usual research reports proclaiming the same debatable results.

There are two converging lines of research inquiry:

1) That prescription opioids are the gateway drugs to dangerous street drugs, most especially heroin.

2) That high doses of opioids are dangerous to pain patients, and the long term use of them doesn’t help reduce pain and exposes the patient to likely addiction.

The second line of inquiry conflates dependency with addiction. This confusion continues the canard that opioid medicines are extremely addictive and thus dangerous.

Janice Reynolds

Janice Reynolds

I interviewed Janice Reynolds, a member of the steering committee for The Pain Community (I was briefly, and will become again, a member of this committee), who is a retired pain care nurse.

I asked Ms. Reynolds why certain members of the medical profession and some researchers believe that legitimate prescribing and consumption of opioids are linked to addiction and the use of street drugs like heroin.

“Twenty years ago OxyContin was known as ‘hillbilly heroin’ because it was so much cheaper for addicts to use than heroin. Addicts will always look for the cheapest drug,” she told me.

Ms. Reynolds believes the notion that OxyContin leads to street drugs rests on a bias that many commentators and researchers have against prescription opioids. She believes drug abuse doesn’t start with prescription opioids, but has antecedents in other substances, such as cigarettes, alcohol, or other commonly available substances.

If most heroin addicts have a history of addiction to cigarettes prior to their addiction to heroin, are we at liberty to conclude that cigarette smoking leads to use of hard street drugs?

It’s as if the researchers are sitting at a railway crossing watching a very long cargo train go by, boxcar after boxcar. When they see the boxcar named OPIOIDS, they begin their research or commentary, ignoring all the other boxcars that preceded the opioid car. This distorts the picture of opioids and addiction.

Ms. Reynolds echoes a common complaint: Most of the criticism of legitimate prescribing and use of opioids comes not from physicians specializing in pain, but from addiction specialists.

The “sexiness” of opioids, addiction and death may have roots in what Ms. Reynolds sees as largely a media creation. As pain patients finally began to obtain better treatment through opioid therapy, the media began to run story after story about the rise in opioid prescribing and the increase in the numbers of people addicted to opioids, especially the now widely used medicine, the bugbear OxyContin.

“This was great advertising to drug addicts, who were until then buying more expensive street drugs,” Ms. Reynolds stated.

Sure enough, we saw addicts move from more expensive heroin to cheaper OxyContin.

However, more recently, cheap heroin has flooded illegal drug markets. And consequently, those engaged in the war on pain patients claim that opioid prescribing is leading to more heroin use.

This is specious. Any consumer will opt for the cheaper product in the marketplace, and that cheaper product is now heroin. We are witnessing the reverse of what happened twenty years ago, when addicts switched from more expensive heroin to cheaper OxyContin.

One of the mistakes researchers and commentators repeatedly make is viewing the rise in opioid prescriptions as causative, or at least correlated, with opioid addiction and accidental death rates.

This is a fundamental mistake that researchers are routinely warned against. Just because A and B happen simultaneously doesn’t mean that A causes B, or that B causes A. There are always intervening variables that need be accounted for.

Ms. Reynolds also spoke of her experience that deaths were frequently blamed on the presence of opioids in the system of the deceased, even though the person died of a disease. This clearly belies a prejudice with grave consequences for pain patients.

This practice obscures the real cause of death while pilloring opioid medicines. It is like saying that the cause of death of a body found in the desert was a rattlesnake bite, when the deceased had a large bullet hole in the head.

Ms. Reynolds also referred to the painfully obvious fact that physicians as well as the public at large do not believe in something they can’t see or quantify: namely pain. When she complained of pain after brain surgery, her surgeon dismissed her — saying she shouldn’t be in pain at that point.

Her surgeon was basing his opinion on “experience” without taking into account Ms. Reynold’s lived experience.

These prejudices have real, debilitating consequences. Across the country, and especially in Florida, people with pain have to continuously shop for physicians who will treat them and pharmacies willing to fill their prescriptions. Untold numbers of people with pain suffer stupidly due to lack of education for health care providers, biased science and commentary, and misguided government crackdowns that make viable pain treatment for millions of us a living nightmare.

Ms. Reynolds believes, as I do, that it is imperative for those of us living with pain to tell our stories publicly to offset the ignorance, arrogance and prejudice that seems to rule the market place.

To this end, I invite all of my readers who have met with this kind of prejudice to contact me here at the National Pain Report so that I may bring to the public the real stories of people like you and me who live with the twin scourges of pain and prejudice. Telling our stories is the most effective means to bring about change.

You can send your stories to editor@nationalpainreport.com.

Mark Maginn

Mark Maginn

Mark Maginn lives in Chicago where he is a poet, writer and social justice activist. Mark suffers from chronic pain and was a longtime volunteer with the American Pain Foundation. His blog “Left Eye Blind” can be found here.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

For more information, read our User Agreement and Terms of Use.

newest oldest
Notify of
Brenda Alice

I am unable to get prescriptions filled locally with lies such as we don’t have it, no we can’t order it without even looking. Mail order is working. Although if the governor’s plans on Tennessee.gov. under news goes into effect my death will be from pain or withdrawal. Some points are good but no sleeping aides or tranquilizers? Doctors having to explain doses? Top pharmacy and doctor investigated each month? Police able to pull years worth of meds for any traffic stops? Thanks for the sharing and support.

Granny Ralls

That’s what I wrote BL. Believe me, as a Medicaid patient I know all about lack of access to quality healthcare. Illinois instituted a law here that allows Medicaid to extort your 4th Amendment rights and more via the prior authorization process in lieu of payment. Either you sign this ridiculous treatment contract that has terms that don’t apply to most, yet you’re expected to sign off on, or else. The ACLU Indiana is suing their state Medical Licensing Board for their emergency rule their that strips docs of their licenses if they don’t obtain signed treatment contracts that also allow law enforcement and paper pushers at there to poke around in your confidential medical files. We have Medicaid administrators and others practicing pain management when it is our doctors alone that should be! Despicable! Yet, here in Illinois, the ACLU declined suing the state. Thank you for the petition link Brenda Alice. I and a friend of mine signed but it stills says only 1 signature Dearie! <3

BL

Granny Ralls, There is a world of difference between access to care and access to quality care. The old saying “you get what you pay for” comes to mind.

The poor may be in worse pain that those who have insurance, income and resources to pay for quality medical care. The poor generally make a living doing physical types of labor. So the chances of them being injured or having impairments from pushing their bodies much further than they should is greater than for others. The possibility of them becoming disabled and unable to work is greater. Yet, they are denied pain management at a larger rate than others. This segment of the population if use to not being listen to in the medical community. Combine that with their options being very restricted in medical care choices and they just give up.

Granny Ralls

“In December of 1948, the United States and forty-seven other member states of the United Nations voted in favor of the ratification of the Universal Declaration of Human Rights, accepting and affirming it as an international and universal standard of humanitarian law. Amongst the guarantees set forth by this doctrine was Article 25, which gives us the assurance that everyone has the right to a standard of living adequate for the health and well-being of themselves and of their family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control. This is a standard which the nations enacting this declaration have sadly made very few steps to bring to fruition.

In 1966, Doctor Martin Luther King, Jr. addressed the Medical Committee for Human Rights in Chicago, stating that, “Of all the forms of inequality, injustice in health care is the most shocking and inhuman.” …and making it evident that, in spite of the progress made in defining humanitarian law and the obligations of states under international doctrine, gross iniquity was still imposed upon the American populous. Then it was the color of one’s skin which could be held as the regard by which one’s necessities for treatment as a human being could be so easily dismissed, and today, other socioeconomic factors…such as one’s income or one’s ability to pay taxes and avoid public subsidy could be held as the defining factor, as times have progressed to embody different prejudices into the minds of man.

Nevertheless, in 1990, the United States Congress enacted the Americans with Disabilities Act, prohibiting discrimination against individuals on the basis of a disability. The Justice Department announced their barrier-free health care initiative, acknowledging twenty-two years after the enactment of the law, that barriers exist to it’s realization, particularly in the case of people who are deaf or hard of hearing receiving medical information in a manner that is understandable to them, and in people with mobility issues being able to access facilities necessary to their well-being in the treatment of their health.

The Food and Drug Administration must realize that the manner in which they classify controlled substances has a direct and material impact on the ability of people with disabilities, many of whom also suffer from chronic pain, to receive necessary treatment and medication, in accordance with their most basic and fundamental human rights, and to act accordingly, to prevent further hardship from befalling the most vulnerable members of our society.”

(Excerpt of my hopefully soon to come testimony before the UN. I went last year and hope to return this!)

Folks! Access to Adequate Pain Relief is a Disability Human Right! Don’t Agonize! ORGANIZE!

BL

Brenda Alice, many yrs in the future when the cost of care at the tax payers expense is so high that it can’t be covered it. . then, maybe then things will change. But, it is a shame that so many will end up losing their life to medical ignorance that has been brought about, encouraged and reinforced by politicians.

Brenda Alice

I would love for the chronic pain community to start stopping the discrimination from doctors and pharmacies and DEA. Even the governor of Tennessee is guilty of this with his plan on Tennessee.gov under news. Why should police need our medication for a year at any traffic stop? Why should people in the state have no need for tranquilizer or sleeping aides? The DEA putting pressure and fines on decent Doctors and pharmacies only hurt every disabled person alive. Lives will be shortened by the lack of narcotics that allow people to move.

BL

I understand what you’re saying. But, suing takes time, and some chronic pain suffers don’t have time. They have already wasted time trying to find someone to listen, look at their medical records and help them. You can only beat you head against a brick wall for so long before you give up. When someone isn’t able to physically continuing going to one place after the other, only to be told no. When their resource/income and insurance options leave them with no where to turn. When others say, “if the pain was that bad, they could get treatment.”

I often wonder if the medical community wants to see the chronic pain patients die because for many medications are of the most help. And because the medical community will not admit that so far they have not come up with anything that will offer the same level of pain management as meds.

Grnny Ralls

I know BL! I know. Everyone must educate themselves about their civil/human rights and fight back. I know it’s hard. But, together we can do it 🙂 Don’t ever give up! The WHO, the UN and many others have said Pain Relief is a Human Right and we have rights to equal access to healthcare. If we start suing folks for violating our civil/human rights, they will get a wake up call! To all my fellow sufferers: You are awesomely beautiful, strong, and worth it! Hang in there 🙂

BL

Granny Ralls, for many, it’s more than suffering with chronic severe pain, although that is more than enough. It is not being able to take a shower, or dress yourself or fix a sandwich. It is knowing that nothing is going to change soon enough, if at all, that will allow you control of your pain. It is being told you have to go into a nursing home, when the only problem you need treatment for is chronic severe pain. It is knowing and having medical records that prove than when your chronic severe pain in moderately managed that you can live independently. But, no medical professional will take the time to read them. It is knowing that going into a nursing home, will still leave your chronic severe pain untreated.

Granny Ralls

A dear Facebook friend of mine just lost a family member to suicide because he could no longer stand the chronic pain he was being forced to endure. They wrote:

“Very sad news last night. A member of my family, living with terrible physical pain and no access to affordable health care, killed himself this week, leaving behind a bereft and traumatized family. The pain was too much for him. This is still American’s experience with the US healthcare. My love to his brother, sister, son, sister-in-law ,niece and nephews.”

Too many deaths are being blamed ON pain meds and little is being said about deaths from lack of access. Cruelty prevails in these short-sighted knee-jerk reactions primarily from those on the right.

BL

I ran across this and thought it would be interesting for those here. It is a letter to the Administrator of Center for Medicare and Medicaid Services from Senator Charles Grassley and Senator Dianne Feinstein. The letter is regarding the connection between prescribing opioid pain meds and patient satisfaction surveys.It was written June 23, 2014.

http://www.grassley.senate.gov/sites/default/files/news/upload/Letter%20to%20CMS%20%28Patient%20Surveys%29%206-23-14.pdf

Granny Ralls

I had one of the so-called foremost pain clinic directors in Chicago tell me that people who smoke cigarettes cannot take Oxycontin because they will become addicts. This doctor (term used loosely) was scheduled to do an epidural on my spine and had he not made that statement, I wouldn’t have cancelled the procedure. Long story, short? I learned I have painful Tarlov Cysts on my sacral spine from my urogynecologist, and epidurals are out if the question! Haha! Too bad no one gave a damn about those “incidental” perineural cysts, eh? It boggles the mind that there a docs practicing junk medicine based on their junk research.

Catrina

My story is similar to many out there. I have an invisible diseases that are painful. I’m relatively young. Every month I have to do the pharmacy dance. Diving from pharmacy to pharmacy to find my medication. Sometimes they have it, but refuse to dispense it. That’s the most frustrating. I’m lied to about it not being in stock. How do I know they are lying? They don’t even look in there computer! Never offer to order it. When I asked for it to be ordered I been told no because they don’t normally carry it and they don’t want any tablets leftover after filling my prescription. I always love hearing it’s back ordered when I know it’s not true. I waste hours driving from pharmacy to pharmacy to ask if they have it. Rarely will the pharmacy call another pharmacy to ask for me. Even when it does happen there is a certain tone in their voice that makes me feel I’m getting the brush off. My back and legs in burning pain. They don’t care that I only have 1 dose left of my pain relief medicine. They give me that pamphlet that says DO NOT ABRUPTLY STOP THIS MEDICATION. I’ve had everything from waiting for a prescription to be filled for over an hour and when it reached the pharmacist refuse. I’ve had a pharmacist hold my written RX hostage to order medication. When I returned to pick it up on the day it should have come in I’m was told it was not ordered. I waited a week. I have to always try to make sure I have enough to last more then 30 days. I’ve had pharmacy staff make comments about me loud enough for other customers to know what kind of medication I’m on. I’ve been on 2 pain (long and short acting)relief medicines for 3 years. I go to the same doctor monthly. He is one of the top Rheumatologist in NJ. My dose has been adjusted just 3 times. I recently had to switch from. Oxycontin 40mg to MS Contin due to financial reasons. I had to be put on 100mg when 60mg was not controlling the pain. I wanted to be on 80mg but it doesn’t come in 80mg and my doctor could not write the RX to take 2 tablets of 40mg because it would be red flagged for being such a large quantity. I have finally found a wonderful pharmacist that has worked with me to make sure I get my medicine in a timely manner. The crazy part is I have to drive 45minutes to 1 hour from my home to the CVS where she works and pray she is the one working and hope she never leaves that pharmacy.

Brenda Alice

Thank you for sharing this. I am sorry about your illness and mine requires me to take narcotic medication, for years now. It doesn’t completely relieve the pain but keeps me from crying most of time. I too could not bear the pain with out the cocktail that is effective now. I sincerely see the old statistics are being used and not allowing for intentional overdoses for suicide when people can’t cope anymore. They like to link meth and heroin problems together in many articles. Instead of treating us all as criminals why not treat and fill our prescriptions until we prove that we can’t take them as ordered. My prescriptions are not hurting others. Time for DEA to see the difference. Well written.

E

Well written and informative 🙂

BL

I wonder how many people will have to die for the the powers that be to realize that not treating or undertreating chronic severe pain is actually costing lives. How many people will have to go into nursing homes because they can’t take care of themselves ? How many people will die from too much tylenol, before that makes the evening news ? The tylenol overdosing isn’t going to be from not knowing how much tylenol you take nor will it be deliberte, it will be from being in so much pain that you will do anything to take the edge off, even if it is only for an hour or two. When someone is forced to be bedridden because they can’t walk or stand well enough due to chronic severe pain, there’s not much left. It is sad when a dr tells someone that if they continue to take the amount of tylenol they have been taking they will die and then tells them they will not give them anything for their pain.

BL

I agree with Ms Reynolds. And regarding the number of deaths we are “told” that are due to opioids, there is no proof that these people died because of opioids. Common sense alone tells you there i soething wrong with the numbers. Think about where you live. Do you believe if that may people were dying that close together, you wouldn’t know at least several people who knew someone who had died from it ? If someone has an opioid in their system or just a prescription for it, their death as counted as dying from pain meds. I don’t know what is worse the fact that the American people, including the medical community are being lied to like this or the fact that others aren’t making enough noise about it that they have to put them on the eveing news.

I found a reference regarding Hydrocodone Abuse & Deaths. “The HHS states that there are increasing trends in the adverse effects from abuse of HCPs, including emergency department (ED) visits, admissions to addiction treatment centers, and deaths in selected States.” & “The HHS mentions that nationwide estimates of overdose deaths due to HCPs cannot be quantified, but the available data for a limited number of States suggest that HCPs contribute to a substantial number of overdose deaths each year. ” This is on the DEA’s website under RESOURCES > Federal Register Notices > Rules – 2014 > Rescheduling of Hydrocodone Combination Products From Schedule III to Schedule II.

Doc ForthePeople

And it seems to me that I have read that the DEA had actually contacted Medical Examiners in the early 2000’s asking them to look more carefully for the presence of “narcotics” and to list that as a cause of death or as a contributing factor. If that is the case, then the statistics have certainly been “doctored”.