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Opioid Tax: Letter to my state representative

Dear State Representative,

Myself and my family are very excited about all of the things you are doing to support those with disabilities. My father heard you speak on the issues of pain medication and addiction, and trying to find common ground so both pain diseases and addiction disease can be treated simultaneously. That is a stance we in the chronic pain community are very excited to hear and support you in that!

In case you did not know about this newly proposed opioid tax, I wanted to give you a little information.
It is proposed that opioid pain medication will be taxed one cent per milligram to fund treatments for addiction.

As you can imagine, those with chronic pain diseases like Lupus, Multiple Sclerosis, CRPS/RSD, Fibromyalgia, or post-cancer pain would be paying for addiction treatments while those with addiction will just buy their drugs illegally instead of paying a raised price from the pharmacy.

Because this tax proposed is “per milligram,”  those suffering with the most severe, most debilitating cases of degenerative neurological pain will likely have the most un-affordable pharmaceutical pain management care, as our doses are typically higher, as you might imagine.

As I am a newly single woman, more recently on disability,  I know that the government works hard to keep drug prices low for those with disabilities. A tax will only make pain medication more un-affordable for those who are spending all of their funds on medical care as is. If this tax is passed on pain medication, it will begin a precedent to tax other RX drugs. It’s one cent now, but it won’t stop there.

Since the CDC’s federal guidelines on opioid control, chronic pain patients are struggling to find pain management care with good pain doctors who are not afraid to treat us. Deaths and overdoses continue to rise. Deaths of people in pain, who are without treatment, and deaths from those who are addicts, continuing to overdose. The guidelines do not work! The tax will not work either.

Again, pain patients are being forced to pay for a disease (addiction) which is not our own. The tax would exclude hospice patients, but what about pain patients who are bedbound like myself? What about those of us who have tried every treatment available and medication therapy is the only option that doesn’t worsen our conditions? What about those trying to maintain a somewhat functional life through chronic pain, and to keep off of permanent disability, taking medications is the only way to continue working and participating in family life?

Medical treatments should never be a punishment. Is this a “sin” tax? Am I sinning? Why should I be ashamed of having an illness I didn’t choose? I am alive in part because of my medications, and so are many, many people! That is nothing to be ashamed of.

Will diabetic medications be taxed to help treat cancer? Maybe Methadone, Suboxone, and Narcan (addiction medications) could be taxed to pay for chronic pain treatment facilities! We are certainly in need of those.

Thank you for using your platform to speak for people like myself.

Please do write your representative today, so a ludicrous tax like this would never get passed. No time to waste!

http://www.cnn.com/2016/05/03/politics/hillary-clinton-west-virginia-opioids/

http://www.painnewsnetwork.org/stories/2016/6/2/senators-propose-tax-on-opioid-pain-meds

CDC hears from Twitter on Opioid Controversy

In the last month, social media has been flooded with articles and blog posts regarding the proposed CDC guidelines to restrict prescription pain medications in the U.S. as an attempt at quelling addiction and overdosing. The controversy is that they are sacrificing those suffering with serious pain and illness for those suffering from addiction disease. Instead of sharing my letter(s) to the CDC with you, I am hopeful these short statements and commentaries from Twitter will encourage you to write your own comments to the CDC today. Each of us has a unique perspective, and story; yours is too important not to share!

Today and tomorrow (January 13th at midnight) are the last days to comment to the CDC. Leaving a comment is very simple, just include Docket #2015-0112 and type your comment here. You can even choose to remain anonymous.

*****
Tweets by :
-CDC I believe Addiction and can be fought simultaneously! These restrictions will only lead to compounded suffering.
-CDC I’ve been on the same dose of for yrs without requiring an increase. No tolerance. No euphoric high. Surprised?
-CDC If humane for those suffering in the US is not an option, we will have to legalize
-CDC says that opioids should be “last resort to treating chronic pain,” however invasive treatments can cause many of us with neurological disease to worsen.
-CDC patients treat our medication with the same seriousness with which we regard our disease
-CDC People with are afraid to take pain meds, not bc of addiction or overdose, but because of Social Stigma.
-CDC Why are you using addiction research to base your opioid guidelines? Less than 5% of patients become addicts.
-CDC You wouldn’t want your dog to be in this much pain. Veterinarians have fewer restrictions!
-CDC: If you restrict pain meds, it will lead to more DIVORCE, PEOPLE OUT OF WORK, SUICIDE.
-CDC One is not addicted just bc they are dependent. A diabetic is dependent on insulin, he is not an addict
-CDC People in pain HATE being on pain meds. We hate pain MORE, & love life too much not to try to do whatever possible to function!
More Tweets regarding the CDC guidelines:
-@ Still don’t understand why the head of the CDC believes lack of evidence is evidence. Amazing! People in pain deserve more.
Jan 11 As of 11:59 pm last night the has received 2450 comments on their Proposed 2016 Guideline for Prescribing [opioids]
You have no idea how frightening the thought is of my pain mngmt being taken away!
  professionals: Comment on new CDC Opioid Prescribing Guidelines. Impact on patient care?
  implemented pain med guidelines B4 it’s passed! Why is nobody talking about this?
 @ We have good literature on predictors of OD with prescribed opioids for pain. Dose is one of many. CDC guideline ignores all others
-@ Trying to read the comments on CDC opioid guideline. Stunned by # of comments about teen opioid Rx leading to addiction…
-@ Bob Twillman, Head of major US pain management organization recently said this: “@BobTwillman Unless/until I see evidence that opioids work for fibromyalgia, I agree that they should not be prescribed for it.”
-@ We have an opioid problem in the U.S. How should chronic pain + opioids be handled? CDC wants your thoughts!

How to Write a Letter to the CDC

PAIN PATIENTS, WE HAVE ONLY 10 MORE DAYS!
Letter to the CDC
Through January 13th, the CDC will be accepting comments from pain patients, caregivers, and family members regarding opioid pain management of adults before issuing the proposed prescribing restrictions.
If you are a chronic pain patient:
!!!YOU ARE THE BEST PERSON FOR THIS JOB!!!
I understand how intimidating this letter feels, and you might think there are better writers than you out there. But please remember, no one has YOUR STORY! Or your voice! Or your experience! We need as many people as possible to help the people at the CDC understand the necessity of pain medication (and good pain management physicians) for our quality of life and functioning.
Personally, I have learned that invasive procedures have proved to make my condition worse, and pain medication management along with what people consider “alternative medicine” or low impact treatment, have been my best options for living. What is your story? How do pain medications play a role in your life? How do they keep you functioning…or living?
I am including a packet below that should help you compose and send your letter, with the info you need to know.
***After you send your letter to the CDC, we would love to share it at Living with RSD on Facebook also. Please send it in a private message and we will repost it, with your name or anonymously.***
Thank you so much for being an advocate for all of us and working together with the pain community! This a historic. We have a chance to make a huge impact! Thank you so much!

Letter to the CDC
    Due January 13th
-IMPORTANT: you MUST list the Docket Number at the top of your document:
               – Docket ID: CDC-2015-0112
-Compose your letter in Word so you can see how many characters you are using
-click “Review” at the top of the screen in Word, and select “Word Count.” It will track your Characters. Stay within 5,000 Characters per CDC guidelines for comments.
-Using Word allows you to use Spellcheck before sending.
-Save your document regularly to avoid losing all of your great work.
-List your job, former job, current organizations you are involved with, and volunteer work you do (in person or online)
-If you list your conditions, remember that the CDC does not recognize all conditions and diseases (such as CRPS/RSD) so include the McGill Pain Index and/or NIH definition for your condition.
-When you are pleased with your letter, copy your document and paste in the comment section here: http://www.regulations.gov/#!submitComment;D=CDC-2015-0112-0001
-Or Print and mail your letter to:
National Center for Injury Prevention and Control, Centers for Disease Control and Prevention
DOCKET #CDC-2015-0112
4770 Buford Highway N.E., Mailstop F-63,
Atlanta, GA, 30341
-Here, you can read other patient letters to the CDC before submitting:  http://www.regulations.gov/#!docketDetail;D=CDC-2015-0112
-To get ideas about what you might want to say in your letter:  http://nationalpainreport.com/response-on-cdc-opioid-prescribing-guidelines-pain-patients-need-to-be-heard-8828943.html
-Excellent Facebook event forum for pain patients, answering questions in real time and giving advice regarding the CDC letters: https://www.facebook.com/events/1099948746690760/

 

You are the perfect person for this job! You CAN do this! Let’s all do it together!

Should Children take Oxycontin? FDA Approval for Pediatric Pain

On August 14th, 2015, the FDA approved children as young as 11 years old for the drug Oxycontin. There is public outrage and disbelief at the thought of children so young taking such powerful opioids in the midst of the current “prescription drug crisis.” Although there is a great deal of public awareness for prescription drug addiction, it’s important we also understand who this medication is intended for.

I found the article about the new FDA approval on the timeline of a friend who is passionate about raising awareness for addiction issues. She and her friends view this news very differently than I do because of our individual experiences with opioid medications. On one end, prescription pain medications can be abused, cause addiction, ruin lives, and even cause fatal overdose, tragically. In my experience as a chronic pain survivor, I view pain medications like Oxycontin as a tool for temporarily relieving the suffering of a person in severe ongoing pain, the improvement of quality of life, and in the worst cases, prescription pain management can be life-saving. 

The drug Oxycontin or “Oxy” is widely known for its addictive properties and high performance on the black market. The drug was reformulated 5 years ago to make it more difficult for individuals abusing it to get a “fast high,” though its reputation has not diminished.

This is Lucie. She has Superior Mensentric Arterial Syndrome and Complex Regional Pain Syndrome. She was active and healthy until the excruciating pain took over her body. Now, she is in pain all day, every day and night, begging her mother to take away her pain. [How you can help Lucie]

This is K. Chandler Rosemont’s experience in physical therapy. She has CRPS/RSD, or the childhood name RND. Because the nerves are so hypersensitive in the disease, even the slightest touch and movements are unspeakably painful.

To those reading this who have loved ones who suffer from addiction as I do, you may be thinking that making pain medication more widely available is the worst thing to do in this prescription drug climate. Actually, pain medications are becoming harder and harder for doctors to prescribe. Every year, the regulations tighten around doctors prescribing month to month opioid pain medications without refills, blood tests and urine samples are often required (state by state basis), there are strict patient contracts, etc. If a patient does not comply, they are terminated as a patient, and the black mark on their medical record follows them. That is protocol for pain management, and it causes pain patients to view their medications as seriously as they view their pain. (Read more in my article, Pain Pills: Chronic Pain Sufferers Speak)

In response to the growing public awareness of the problems surrounding prescription pain medication addiction, both chronic pain patients and doctors are under tighter regulations each year. However, since 2004, children diagnosed with chronic pain has increased by over 800%! So this approval by the FDA is certainly not unwarranted.

Personally, I believe the bigger problem lies with non-pain management doctors prescribing pain medication with a cavalier attitude. This past year, one of my relatives was prescribed a pain medication after she was seen for a sore throat. Dentists often prescribe a full month’s supply of strong pain medication before knowing whether or not the patient will be able to tolerate their minor after-procedure pain. Studies show that less than 3% of chronic pain and cancer pain patients are actually becoming addicted to their pain medication; chronic pain patients can typically stop taking the medication on their own. However, when pain medication is prescribed for acute, healing injuries without concern of addiction history, doctors don’t consider if the short-term pain could be tolerated without the medication, or if there is an alternative to manage the pain, the average person is put at greater risk for becoming addicted.

It is difficult to think of children suffering in excruciating, non-stop, pain every day, but this is a reality we cannot ignore. Complex Regional Pain Syndrome is a debilitating neurological pain disease that has deteriorating effects on muscle tissue, it shrinks bone, and changes the brain and nervous system to feel pain at an outrageous level. CRPS also causes the skin around the “affected area” to turn purple, black, blue, causes swelling, changes skin temperature, and the skin can begin to deteriorate as well. It is considered more painful than amputation, childbirth, or cancer pain, and there are children living this nightmare every single day. Children suffer from a variety of neurological and muskuloskeletal pain conditions just like adults do. Children are treated for disabling chronic migraines, Childhood Fibromyalgia, and tragically, children are treated for cancer pain.

Oxycontin has been approved by the FDA for pediatric prescription for severe cases of chronic pain and end of life care in children ages 11 to 16. Before it can be prescribed on a regular basis, there is a protocol to make sure the child can tolerate the medication safely. Interestingly, there is only one other opioid pain medication approved for pediatric pain management- the Fentanyl Pain Patch. If you have ever been prescribed any kind of medication to help manage a problem with your own health, you know that it can require trying a few different types of similar medications before you and your doctor find one that helps you without causing intolerable side effects. Until now, children suffering from debilitating chronic pain had only one FDA-approved option to try for pain medication.

There is still the question of theft. Pain medication is often stolen by relatives or house guests who struggle with addiction. I have heard many stories of spouses and caregivers who skim a few pain pills each month when they pick up at the pharmacy. One fellow pain patient told me she kept her medications in a heavy locked safe that was bolted down, but a family member still managed to steal her safe and medications inside. This is a real issue that should be part of the awareness of opioid pain medication addiction along with the patient’s responsibility to protect his or her medications. However, just because there is a public addiction issue does not mean individuals in pain should be deprived of proper care. One problem does not supersede the other. Would you tell a child screaming and writhing in pain every day without sleep, unable to go to school or play with her friends that she should be denied some relief? 

I personally think that a child suffering should have access to pain medications while they seek out other methods of treatments. We know that children respond better to alternative treatments than adults do; however, that doesn’t mean they should have to wait months or years while trying treatments and procedures to have improved quality of life, nor should they have to suffer for years until they are “old enough” to receive proper pain management.

I am interested in your thoughts. Please share them below in the comments section.

**********

Sources:

http://nationalpainreport.com/fda-approves-opioids-for-some-children-8827137.html

http://www.nbcnews.com/health/health-news/fda-approves-oxycontin-children-young-11-n409621

http://www.drugfreeworld.org/drugfacts/painkillers/warning-signs-of-prescription-painkiller-dependency.html

http://www.medscape.com/viewarticle/807349

Pain Pills: Chronic Pain Sufferers Speak

"Pain Pills: Chronic Pain Sufferers Speak" #Pain #Meds #Health #Cancer #Spoonie Art Print by Flat Earth Designs on Etsy. Nathaniel Bibaud. "Pill Rat"

Flat Earth Designs: Etsy

There is a great debate in America regarding prescription pain medication. From someone who hears this issue from fellow chronic pain sufferers regularly, we have a dog in the fight, too.

Those with chronic, non-cancer pain have been criminalized in the last 10 years along with their doctors because of the medications being prescribed…wait, no…flip that, reverse it. In the last 10 years, because of individuals abusing their pain medications, addicts buying opioids on the black market, and doctors over-prescribing irresponsibly, chronic pain patients, and their doctors have been treated like criminals.

Founding a support group for Complex Regional Pain Syndrome: known as the most painful condition one can endure, let me be clear that even people with the worst possible pain do not want to take pain medication. Why not? When they are screaming, crying, homebound and barely holding on, why won’t they take 1 tiny little pill? For one, they are afraid of becoming an addict! They are worried their family will think less of them. They are anxious that if their doctors prescribe it once and it helps, how will they ask for a refill without sounding like the “pill seekers” they hear about on television? Too many times people are nervous about taking their prescribed medication for severe chronic pain because of what they have seen on talk shows and read about on the internet.

Well, here’s something else to read…

A study in 2007 sampled 15,000 veterans with chronic pain (Edlund et al.). They were all given opioids, and only 2% abused his or her medications. I have read other studies like these for chronic and cancer pain in which the addiction or abuse rate is always extremely low. Apparently, people in excruciating pain, 24/7, every single day for years are managing his or her pain medication AS PRESCRIBED. This may shock some of those television personalities.

Why is it that those with chronic pain are much less likely to become addicted? In those without chronic pain, opioids cause a sense of euphoria. For those WITH chronic pain, the medication does not match or overcome the pain. A neuropathic pain study published in 2003 by the New England Journal of Medicine found that opioid pain medication only gave 36% pain reduction at the highest dose possible before side effects of the drug were intolerable. Those with such extreme pain continue to feel pain; therefore, how can there be a medicated euphoria? Maybe this is why there is a much lower rate of addiction in chronic and terminal pain.

Many of those I encounter are so conservative with their medications. They take as little as possible, even when pain is high. When pain is low enough to tolerate, most don’t take any pain medications. No one wants to take any type of medications. Those I encounter do what is available to them to manage pain: treatments, therapies, procedures, etc. Pain medication is seen as a means to an end. A short-term negotiation until there is a better pain relieving strategy. But for many, it is a necessary part of living, coping, and functioning with painful neurological disease.

Doctors who treat chronic pain exclusively are held to increasingly high protocols by the government. There are more changes all the time concerning how they can and cannot care for their ailing patients. With more government restrictions, more paperwork, more required seminars for doctors and nurses… Do you think MORE attention and time is being given to patients, or less? If you are a patient who sees a pain management specialist, you would be expected to sign a patient contract. The doctor has communication with your pharmacist, and you would be expected to furnish monthly urine and/ or blood depending upon which state you live in. Because of the current climate regarding these “controlled substances,” those with painful chronic illnesses like RSD, Peripheral Neuropathy, and Trigeminal Neuralgia who go to a hospital for an emergency may be treated like a criminal until their pain doctors can be contacted. Imagine if you were the one having a medical emergency!

Just a side note, in my research I learned that a doctor’s office can be thought of as a “pill mill” if 50% or more of its patients are treated for pain management, even if they offer physical therapy, biofeedback, counseling, acupuncture, interventional pain therapies, etc. If the doctor is chief at the local hospital, she still runs a “pill mill” up the road because she primarily treats people with chronic pain or cancer pain. Nice, right? CDC Pain Clinic Regulations

Whether you are judging someone else with chronic pain for taking pain medication, or if you are judging yourself because you think it means you are somehow weaker for taking your meds, please ask yourself a couple of questions. If you had another condition… cancer perhaps, would you feel guilty or like you had caved in by starting on the prescribed chemotherapy protocol? If you had diabetes, would you deprive yourself of your insulin, only taking half the dose, when you are on the verge of going into a diabetic coma? Do you feel shameful about the other medications and treatments you are being prescribed currently for pain?

If you are taking your medication as prescribed, then is your concern about becoming addicted, or is it the social stigma you worry about? For those judging, if your sister, son, or elderly grandfather were suddenly touched by crippling degenerative neurological pain, wouldn’t you want them to have the best Quality of Life possible while they explore ALL available treatment options? If every treatment they tried in the next 5 years failed to help, but you knew pain medication would keep them functioning through the pain, would you still want them to suffer the next 5 years without pain medication?

Pain medications can be dangerous, yes! They ABSOLUTELY should be taken with caution, with respect, and with the same seriousness with which you regard your disease. Along with all of the voices yelling about the pain medication issues, people who have chronic pain tend to have quieter voices, but please remember, we are still speaking.

**********

More resources:

DEA Rescheduling Hydrocodone

The Doctor’s Dilemma: opiate analgesics and chronic pain

How Does Chronic Pain Management Work?

art print by Nathaniel Bibaud. Flat Earth Designs on Etsy.

“Pill Rat”

Flat Earth Designs on Etsy. “Pill Rat” art print by Nathaniel Bibaud.

Thank you so much Nathaniel. Go buy something awesome from his shop!

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