Dear Fellow Warrior, CIAAG is excited to welcome in the New Year with you! For our first correspondence of the year, we would like to discuss the National Institute of Health's "Pathways to Prevention Workshop: The Role of Opioids in the Treatment of Chronic Pain" and how it relates to the current state of pain management and access to opioid analgesics in America. The National Institutes of Health (NIH) workshop was co-sponsored by the NIH Office of Disease Prevention (ODP), the NIH Pain Consortium, National Institute of Drug Abuse (NIDA), and the National Institute of Neurological Disorders and Stroke (NINDS). A multi-disciplinary Working Group developed the workshop agenda, and an evidence report was prepared by an Evidence-based Practice Center (EPC) through a contract with Agency for Healthcare Research & Quality (ARHQ). At the end of the workshop, an independent panel prepared a report which identified research gaps and future research priorities (similar to the later published HHS Pain Management Task Force). The final report examines the impact of chronic pain in America, focusing on economic impact, disability and how we as a nation are currently approaching the treatment of chronic pain in a way that maximizes effectiveness and minimizes harm. The panel noted an increase in the incidence of chronic pain, along with a rise in the use of opioids and while opioids were associated with pain relief, they were also associated with adverse outcomes (particularly disability). Officials wanted to explore the alternative methods of treating pain to see if improved outcomes were achievable while simultaneously decreasing the rates of disability. The context of the report acknowledged a number of serious issues facing individuals suffering from chronic pain including but not limited to: 40 to 70% of people with chronic pain are not receiving proper medical treatment (both under and over treatment).

The burden of dealing with unremitting pain can be devastating to the patient's psychological well-being and can negatively affect a person's ability to maintain any gainful employment.

Negatively impact the doctor patient relationship with some patient's being "fired" by their physicians and/or stigmatized by their pharmacists.

Biased media reports on opioids effect patient care. They noted all of these factors may lead to increased anxiety and fear among stable patients, that their medications could be tapered or discontinued to "prevent addiction." In addition, the panel acknowledged that only a minority of those who use opioids for chronic pain become addicted, were compliant with their medications and had a "satisfactory quality of life". The panel also stated, "some patients experience substantial pain relief from prescription opioids and do not suffer adverse effects." Despite this statement, the report claims that the benefits to individual patients must be weighed against the public and population health goals of our legislative bodies. The panel acknowledged the potential for patient harm as a result of this process. As noted, "they struggled with striking a balance between two ethical principles, beneficence and doing no harm, specifically between the clinically indicated prescribing of opioids, the desire to prevent inappropriate prescription abuse and harmful outcomes." This statement shows that the panel was aware of the potential that patients could be harmed yet they proceeded to prioritize the benefit of the population over the benefit of the individual. Wait....so they knew patients could be harmed?!?! Up to this point, the message we have received from Washington is that the reduced supply/patient access to opioid analgesics was due to the "crisis" and the so called weaponization of the CDC Guidelines yet as evidenced here, this has been a long term strategic goal of HHS and other relevant federal agencies and private stakeholders. Right there in black & white, they acknowledged that the goal was to develop a new system of care that would prioritize the health of the population over the individual. This makes it clear that the changes taking place in our healthcare system are not rooted in the opioid crisis but are instead rooted in the government's focus on pain research. Let's take a look at what they proposed to do about it: Despite the fact they acknowledge a number of benefits of opioid analgesics and "that there is a subset of patients for whom opioids are an effective treatment method for their chronic pain, and that limiting or denying access to opioids for these patients can be harmful". They proposed a holistic approach to management of chronic pain. So, how did they propose to accomplish that? They proposed a redesign of the electronic health record that would facilitate an assessment and integration of standardized data that would permit wide-spread studies/clinical trials to take place within the private healthcare system. This would permit a pragmatic clinical trial to be embedded within the healthcare office visit. This would take place without the patient and/or treating physician's knowledge. Principal Investigators (researchers) would then be permitted access to our private medical files to review newly created standardized patient data. Some of the holistic approaches being tested include, yoga, cognitive behavioral therapy, acupuncture and physical therapy. The outcomes would then be used to develop and later disseminate "best-practices." Therefore, patients are being force tapered and put into untested therapies under the guise that these treatments are so called "best practices" however, the data has not been produced and is being currently studied. The potential benefit to the patient is unknown. The researchers were left with one more problem: How do we get people to willingly taper off their opioid medications? The panel noted: "It is not clear from a practical standpoint that patients with chronic pain would be willing to be randomized to placebo, non-pharmacological treatment, or non-opioid medications." They also identified similar practical issues around recruitment of individuals who would be willing to have their medication tapered so they could engage in these various treatments. (You see, in order to test the effectiveness of each treatment, patients could not be taking opioid analgesics as it would effect the outcome of the studies). Their Solution: The workshop speakers (which included Jane Ballantyne, Roger Chou, Daniel Clauw and Erin Krebs--all board members of the anti-opioid advocacy group PROP) proposed an alternative design, which involved accepting patients on long-term treatment into a study and randomizing them to maintenance verses tapering of the opioid. They proposed conducting pragmatic studies using the electronic health record; they can create randomized studies without having to recruit anyone therefore, resolving the issue of patient consent and willingness to taper. All they need to do is go through the health records and find patients who fit the profile they are looking for and take it from there! So much for de-identifying the patient records.... Patient consent? Pffft! Who needs that when we can bypass this and find a way to do it anyway, and do it without their knowledge that their private care is being dictated by Principal Investigators rather than their treating physician. How it all comes together.... A 2011 report by the Institute of Medicine, "Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research" sparked efforts from various federal agencies to partner in addressing this issue including, but not limited to, HHS, CDC, FDA, AHRQ, NIH, DoD and the VA. The Centers of Excellence in Pain Education (CoEPEs), act as "hubs" for the development, evaluation, and distribution of pain management curriculum resources for medical, dental, nursing and pharmacy schools. This would ensure that the new data created by these studies would then be integrated into the education system; therefore, influencing the prescribing practices of physicians at the start of their career. Other entities involved include the Stanford-NIH Pain Registry, now called the National Collaborative Health Outcomes Information Registry (CHOIR). They collect outcome data on a large number of patients suffering from chronic pain. Finally, the Inter-Agency Pain Research Coordinating Committee is a federal advisory committee charged with coordination of all pain research efforts across all federal agencies. The IPRCC was the agency that was appointed by HHS to coordinate and oversee the population studies and pain research that was mandated by section 4305 of the Affordable Care Act. As a result of this, the National Pain Strategy was drafted and later the Pain Management Best Practices Task Force wrote a report that identified further gaps in "best practices" that would need to be identified in order to complete the strategy. You mean the CDC did not act alone? No, they did not. We have been told that patients are losing access to opioid medications due to the "opioid crisis" with little to no other explanation. We can see here through this workshop, there is much more to this than meets the eye. See Below for our Call to Action January 2, 2020 - Call to Action: We are asking our members to send their congressmen/senators a copy of this email. We are also asking that you let them know that you are aware of the changes in how pain is being managed in our country. That it is due to a policy change, that it had nothing to do with addiction/overdoses but rather is a result of a population study. Part of this policy was to discontinue opioid medication and replace it with alternative therapies in order to study if they work so they could be manufactured into best practices and used to rehabilitate current and future patients. They need to be told that we demand oversight and that tax payer money is being wasted. We as concerned citizens are demanding an investigation into these studies. Do not let them redirect the conversation back to opioids; this is not about opioids! This is about pain research, privacy rights, civil rights as American citizens and our right to choose...and now we have the proof. Now that we have the truth, in their report and in their words, it is time to start discussing the real matter at hand. No more discussion about opioids. Makes you wonder why anyone would work so hard to deny this fact. How many people knew and didn't say anything, or worse...told you this was not true? Are you an Organization or Healthcare Advocacy Group interested in joining the CIAAG Coalition partnerships? If so, reach out to us at info@ciaag.net and inquire how to become a partner and join our monthly collaboration call. Please Donate Here! Thank you for your support and your help in our effort to promote change and protect patient rights! Together we are #CIAAGStrong! Sincerely, Lauren Deluca & Shasta Rayne Harner Founding President & Vice President Chronic Illness Advocacy & Awareness Group, Inc., dba CIAAG Po Box 1203 Worcester, MA 01609 Phone (774) 262-6671 Fax: (508) 453-1033 Tweet Facebook Linkedin Instagram YouTube Pinterest Note: CIAAG is a 501(C)-3 organization therefore any and all donations are are 100% tax deductible. Things that donations will be used for: Travel

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