Respond to CDC proposed guidelines

Dec 17, 2015

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Here is your chance to voice your opinion on how the PROPOSED CDC Guidelines may affect you as a pain patient who needs proper and timely access to care. (this link is the place to submit your comments), there is also a link on the CDC page that brings you to the guidelines, as well it might be a good idea to write your statement in a word document so that you dont lose it, as well as share it here on our page in the comment section on this post. ‪#‎ShareYourStory‬‪#‎RaiseYourVoice‬ ‪#‎MakeADifference‬

Dont forget to send your letter to the CDC… http://www.regulations.gov/#!submitComment;D=CDC-2015-0112-0001 #AccessToProperCare #MakeADifference #ShareYourStory

Here is POP President Barby Ingle’s submission:
National Center for Injury Prevention and Control
Centers for Disease Control and Prevention
4770 Buford Highway N.E., Mailstop F-63,
Atlanta, GA, 30341

Attn: Docket CDC-2015-0112

Dear CDC and NCIPC staff,

I am Barby Ingle, a chronic pain advocate, author on pain issues, and a chronic pain patient. I have been battling chronic pain since 1997. First with endometriosis which resulted in a full hysterectomy and left oophorectomy. In 2002, I developed Reflex Sympathetic Dystrophy (RSD), is a progressive neuro-autoimmune condition that affects multiple system in the body and needs to be treated early so that disability does not take over. I also have intestinal/cardiac ischemia, TMD, epilepsy and other secondary conditions. I know firsthand how hard it is to continue looking for relief, perfect answers, and to hit roadblocks in getting access to proper and timely care. As I search for a cure, I have become my own best advocate and work sharing the information to help others in my situation. Even after seeing over 100 healthcare professionals, having major surgeries, complications such as internal bleeding, medication interactions, kidney stones, tumors, severe constipation and so much more – I did not give up or give in! I have tried at least 2 dozen types of treatment options from invasive surgeries, chiropractics, physical therapy, to less invasive like medications, infusion therapy, oral orthotics and posture apparel.

I was able to stop taking opioid medications long-term back in December 2009 after gaining access to infusion therapies. I know that if I lose access to the treatments that are currently keeping me out of a wheelchair I will need opioid pain medications again. I developed internal bleeding after taking NSAIDS for over a year trying to stay away from prescription pain meds, after being told they were harmful for me. Turns out the NSAIDS were even worse. This past March I needed opioids again after 26 inches of my intestines developed ischemia. I was hospitalized and in acute severe pain, in addition to the chronic pain I live with due to RSD. I see multiple providers to assist me in my care (PCP, neurologist, cardiologist, neuro-dentist, dentist, general surgeon, pain management, urologist, gastroenterologist, and others as needed). I have been through counseling, physical therapy, occupational therapy, Calmare therapy, and more.

I found that a well-rounded approach works best for me (medication, oral orthotic, posture exercises and apparel, infusion therapy [IV-ketamine and stem cell], medications and specialized physical therapy. I have faced insurance company barriers such as step therapy and prior authorization stall tactics. The more road blocks that are put in my way the worse I become physically and mentally in my challenges of living with chronic pain. The weaker I become, the more I will cost the system. Considering this happens to too many of the 130million+ Americans also living with a chronic disease this is costing our society hundreds of billions of dollars that could be avoided.

If I didn’t come up with fundraising and family to help me out, most of the care I received, I wouldn’t have had an opportunity to receive. My only choice then would be pain medications. Many of my pain friends are in this tough situation. They wish they had access to other treatment options, but due to other limitations financial and blocks by insurance companies and providers becoming more and more afraid to prescribe to us the lifesaving medications I have seen a horrible trend increase over the past 5 years. Since 2012, I have lost at least 2 friends each month due to suicide. Many of them did it through intentional overdose. Their numbers are included in your ‘abusers’ statistics. They were not abusers, they were making a conscious decision based on the difficulty in getting proper care. When they feel trapped, hopeless, and like they are not going to be able to get their medication due to barriers like the ones the CDC is proposing they give up. They are getting slammed off of their medications and decide death is a better option as they have no strength to fight the system to get what they need.

We are the 98% that are doing things right. We are following the directions of our providers, we are doing what is allowed through our insurance and government. These decisions should be between the provider and the patient and it should be individualized care. We are the majority. Unfortunately, these guidelines are causing the ‘right’ to go wrong, to give up, to take despite measures. It is very hard to lose so many friends when it could be prevented. You have the ability to help the ‘right’. You have the ability to concentrate on getting access to the majority. You have the ability to focus policies that will provide proper and timely access to those of us who need it while addressing the abusers in a more targeted manner. To blanket this abuse issues of the minority and cater to those who decide to do it wrong you are making more abusers. Some of whom are not even true ‘abusers’ they chose to overdose because of bad policies that are preventing proper access to care.

We need policies that open access to multiple forms of treatment and get insurance to cover a better multi-disciplinary approach to care. This would cost them less in the long run and it would lower the intentional suicides of pain patients. A good start would be guidelines from the CDC to better integration of eastern, western, psychological, and naturopathic treatments so that we are able to lower medication doses. Taking away pain medication and making providers afraid to prescribe due to your guidelines is only going to make more abusers, increase suicides, and tear apart the lives of millions.

Thank you for taking the time to read my comments and opening the door for chronic pain patients across the country to voice their stories. We need hope, we need help. We don’t need to be punished for the few who are doing it wrong. Please keep us in mind as you work on abuse issues are realize that there are a lot more of us choosing ‘right’ and our lives have value. Please don’t help lower our life standards and abilities due to the actions that abusers choose for themselves.

Sincerely,
Barby Ingle, President
Power of Pain Foundation
480-882-1342
www.powerofpain.org

Comments

3 responses to “Respond to CDC proposed guidelines”

Joann Parks

December 29, 2015

Docket No. CDC-2015-0112

I am one of over 2 Million people who suffer daily-hourly-minute by second with Chronic Pain, RSD/CRPS.
While my condition has been around and documented since the Civil War, there has never been a cure for this Disease and minimal research has been received for a cure. Therefore the community of Chronic Pain sufferers has been sentenced to a lifetime of Intense, Grinding, Unbearable Pain.

The Opiate debate is merely a smoke screen for Pharmaceutical errors and greedy politicians as there is proof in the public media of Doctors who support the standing of Opiates and its required prescriptions until a cure has been publicly announced.
There have been 8 Doctors in the past few years that have been shot or mysteriously killed in which they had connections within the research and development of possible cures. If they were able to bring a cure to the table the pharmaceutical companies would lose Billions of dollars. The CDC would not be able to play drug lord and patients would live a pain free life once again.

There is too much money to be made while people are living in constant pain due to Cancer, Leukemia, MS, Arthritis, RSD/CRPS, Fibromyalgia and list is endless. Thanks goes out to Dr. Fudin, for being supportive and standing up/out in support of our treatments and the Required Opiates. It is sad that the Government wants to play God and/or Doctor without the required training and ongoing studies needed to treat and care for patients. Doctors play a very Key role in the patients lives. They spend a great deal of time getting to Know the patient and their conditions, and after several attempts of medications, diet, and exercise they prescribe the Best possible and/or available medications to the patient.
However, since the CDC (a disease prevention) has stepped in and overshot their role on the subject by limiting the Educated Doctors on the amount of medication they can prescribe, Millions of people are suffering at a higher rate than before the 10-04-2014 ruling. This is a very inhumane treatment for humanity and a major setback for mankind.

I have been living with RSD/CRPS for 5 years now, never heard of this condition until I was diagnosed with it after 2 meniscus surgeries on my right knee. It took a year to even receive the diagnosis which delayed my treatment and possible improvement because doctors are reluctant to commit to the diagnosis as a possible error on their involvement. My Disease can have an onset from a very minor injury to surgery, in the Civil War it was from gun shots, exposure etc….
Since my diagnosis it has been an ongoing battle with treatments, medications, loss of independence, loss of loved ones and family who can’t stick around to help and support you. My daily life, (existence) has gone from a 6 figure income to welfare, loss of my partner in life, and family members who judge and reject me, and my story is shared by millions of other Chronic Pain Disease ridden sufferers.

My Day begins in pain, I have to make my 2 Norco’s last all day…..needless to say it doesn’t. I have to see the Doctor who prescribes my medications and Norco’s monthly. I am on a pain contract (I am drug tested like an addict) so therefore I cannot take any other medications that are not in my file or my contract is broken, my treatment is stopped and I most likely would commit suicide because the pain is that bad! Once I receive my paper prescription for Norco’s I go to the pharmacy they do not have it in stock, once again due to your 10-04-2014 ruling. Therefore I have to go up to 5 days at minimum, no pain meds, and I lay in Unbearable Pain, Grinding teeth and crying uncontrollably because I have no meds.
I am already at a minimum daily dose that is not keeping me comfortable, and to have no meds…….just shoot me!!
My Doctor would like to be able to do more but her hands are tied up by CDC Tape and each person who handles the prescription on a professional level is fearful of losing their license and why….because CDC thinks they know better than the attending educated Physician who sees the patient on a regular basis.

Patients with Diseases that require Opiate treatment should be able to receive it without fear, discrimination and/or humiliation. We are human beings and should be treated with respect and dignity, not be prejudged or condemned because we have received a life sentence of Pain at no fault of our own. We are not drug seeking addicts, we are Patients with Chronic Pain looking for relief at minimum and a cure in our daily prayers. So while you sit at your desk disconnected from the people you affect, try to remember a loved one in your family who has suffered from pain, cancer etc. put a face to the
rules and regulations and remember it may be you or your family who is affected by pain someday………

Reply
Emily Ullrich

January 20, 2016

Barby, your comment was wonderful. As usual, I’m inspired by you. I thought I would also share my comments…I was so worked up over the guidelines, that I ended up making three in total!

As a person who has suffered from chronic pain for eight years, these guidelines will negatively affect me in a number of ways. As a patient advocate, chronic pain researcher/writer, and Delegate to Power of Pain Foundation, I am privy to the healthcare information of thousands of other chronic pain patients for whom this set of guidelines would also affect negatively. On behalf of myself and those whose needs and rights I fight for every day, I implore you to consider the following concerns.

First, the CDC’s statements regarding the need for more pain training for all physicians are correct, but in order for that training to optimal and effective, pain patients and/or advocates should be involved in the training process. My pain doctor has put me on his board for this reason. He says as a patient and advocate, I often know more than the doctors, because I live and breathe it. This inclusion is important, because doctors need to thoroughly understand what patients go through, and how pain affects our lives, in order to treat us properly.

Second, the stigma surrounding chronic pain is already so horrible, that most doctors already won’t prescribe pain meds, and almost all chronic pain patients are accused of drug seeking, at least once. The continued misinformation (like some of the wording and lumping together of addicts and pain patients) only serves to fuel this stigma. Doctors and the public need to know that the REALITY is that less than 5% of chronic pain patients abuse their medication or become addicted. Doctors and the public need to be keenly aware of the difference between dependence and addiction.

Third, most of the suggestions in this document regarding “preferred treatments” are things that the majority of pain patients either tried, and have had fail, or use as part of their overall pain regimen. I and every pain patient I know would stop taking opioids in a heartbeat if we had any quality of life without them. Accessibility to these medications is becoming more and more difficult and making patients live in Hell is not only unethical, but it’s against a doctor’s oath to do no harm. So, I fear that these guidelines will make obtaining much needed relief even harder.

Last, the suggested morphine equivilent daily dosage is excessively restrictive. We pain patients deserve quality of life, and for many of us, this limit is FAR lower than what we need to function. If we are aware of the risk we’re taking, and our doctor has informed us of the potential harm, we should be allowed to chose to take this risk, if the alternative is little to no quality of life. Additionally, this report is not forthcoming about the equally, often MORE harmful potential of drugs like Neurontin, NSAIDs, biologics, and many other “preferred treatments.”

I have pasted links below to articles I’ve written which defend the statements I’ve made above. I hope that you will take these important details into consideration. Most importantly, unrelieved pain KILLS, and doctors need to know that. It is my hope that you will make chronic pain patients, advocates, and pain groups (the people affected most by these guidelines) a part of this discussion.

Sincerely,

Emily Ullrich
Delegate Power of Pain Foundation

http://www.painnewsnetwork.org/stories/2015/9/29/the-risks-of-non-opioid-pain-medications

http://www.painnewsnetwork.org/stories/2015/12/8/the-importance-of-treating-chronic-pain

http://www.kentucky.com/opinion/op-ed/article44613426.html

Although I have already submitted a comment, I would like to add a few thoughts upon further consideration. The comment made by the CDC on behalf of these guidelines, “Many non-pharmacologic therapies, including exercise therapy, weight loss, and psychological therapies such as CBT (cognitive behavioral therapy) can ameliorate chronic pain,” needs to be re-thought…It should be noted that most of us already use some of these therapies (as we are able), and that many of us need pain medication in order to be capable of doing these things. Also, many of us are on medicaid. Medicaid won’t pay for most alternative therapy, and in fact, most insurance will not pay for gym memberships, trainers, massage, etc.

I have been to two addiction specialists, both of who said I was not addicted to pain medication, and that I had reached the highest level of CBT exercises and meditation/breathing training that I could do. It was concluded that I needed pain medication. Like all medicine, pain treatment is not a “One size fits all” therapy. We need to be able to do WHATEVER it is that works for us, and it is unreasonable and unethical to prevent a pain patient from achieving relief. Additionally, if, for example, weight loss is a suggested treatment, A) the patient needs help in this process, help which is covered by insurance, and B) weight loss cannot be achieved overnight. In some cases, it cannot be reached for years. What is the patient to do in the meantime? And what if they can only exercise WITH the assistance of pain medication?

It is true that doctors (including the ones who wrote these guidelines) are under-trained in pain. But it is untrue that doctors throw around opioid prescriptions haphazardly. In fact, most pain patients have under treated pain, because either their doctor doesn’t believe them, they’re scared to ask for higher doses, they are discriminated against due to gender, race, and other socio-economic factors, and none of these reasons are acceptable. It has been proved that unrelieved pain causes brain atrophy at an astounding rate. How is it okay to not only allow patients to suffer, and to have little to no quality of life, but also to threaten their overall health. Unrelieved pain KILLS. It causes high blood pressure, heart attack, stroke, and brain damage (in addition to hundreds of other comorbidities). If doctors withheld insulin from diabetics, because they are dependent on it, they would lose their license. How is this any different?

Please consider the potential harm that these carelessly created guidelines will do. Even Dr. Ballantyne herself said, in regard to pain patients whose medications were reduced or removed, “…if they don’t get them from doctors they will turn to illicit sources which are even more dangerous.” How can doctors knowingly throw us to the wolves? It is absolutely barbaric, insensitive, unethical, and astonishing that doctors KNOW that patients who are suffering will be forced to take drastic measures, some will turn to heroin, and worse, suicide. How can this be considered good medicine!? I know that her argument was based on patients who had already been on opioids, but what she said is true about those who are in relentless, unrelieved pain, whether they’ve been treated with opioids or not. None of us WANT to be on these medications, but we do want quality of life, and life itself, and as American citizens, we deserve it, as our human right.

I have read many comments from people who are concerned with addiction, and who have lost loved ones. I truly sympathize with them. However, addiction and chronic pain are two very separate and complicated illnesses. Addicts have the gene, predilection, and natural desire for a “high.” They will chase that high in whatever form they can, and it is not going to be fulfilled by a prescription. Chronic pain patients do not ever feel intoxicated from taking their medicines. They merely feel relief. Doctors need to understand that relief seeking, and drug seeking are not the same. And, no matter what the CDC does, addicts will get their high. Legitimate patients are the ones who will suffer. Even Dr. Ballantyne herself was quoted as having said that patients who are taken off of opioids will likely turn to the streets, or even suicide. How can we conscionably make a law or guideline which could cause this?! I implore you to include the MILLIONS of chronic pain patients who are literally alive only because they can bear their pain with the help of opioids.

I know, I went overboard, but hopefully at least some of our comments will be heard and taken to heart!

Reply
Barbara Woolston

March 10, 2016

Yes to what ohers have stated regarding the CDC doing even.more restrictions. I have been a pain patient for 30years ,started out slowly with Darvocet but involved in 3 major car accidents. The damage sneaks up over ti.e. I have been lowered from the amount of meds that actually help too due to my doctors being scared. I have been thru the gamit of surgery ,physical therapy accupunture etc. I will write to the CDC too! Also I think the Media has done us great harmfavoring the addicts. We need to go on our citys news national news & tell our side of the story. This is a huge violation of our Civil rights, shedding the bill of rights having the final day of governiring our own bodies. This way the public does not confuse the issues when politions are trying to take away our right to life liberty & the pursuit of happiness (pain free)! Barbara from california. If an one wants to do a class action law suit against the DEA, CDC, FDA I have spken with the lawyers that can overturn the constitution. They just need one patient & one doctor that was to hold back pain meds. & they pay the cost by winning. I have studied the War on drugs dating back to 2001 & whom the players really are!

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Respond to CDC proposed guidelines

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3 responses to “Respond to CDC proposed guidelines”

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