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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

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