Respond to CDC proposed guidelines
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.
Barby Ingle, President
Power of Pain Foundation