March 13, 2016
Dear President Obama,
Today at noon I could hardly breathe. Hot tears fell on my cheeks, and a deep heartache filled my soul. The U.S. Centers for Disease Control Guidelines for Prescribing Opioids 2016 was published. I was saddened at the words on the pages. More than most, I was acutely aware of the impeding impact of this new policy on tens of millions of people with chronic pain. To be sure, I agree that significant changes in opioid prescribing needed to be reined in and that the opioid epidemic requires strong measures. But I have never agreed that it should be done at the expense of the lives and increased suffering of people with chronic pain.
As a patient advocate, for the better part of 2014 and 2015, I consulted and worked with other pain relief advocates to understand the impact of policies restricting access to opioid medications on legitimate chronic pain patients who needed them. I participated in many meetings, conversations, and panels. I had an unshakeable confidence that if major policy changes in prescribing opioids were to occur, the leadership of federal agencies making those recommendations would care about the millions of people with chronic pain and say, “we will help you advocate for major research funding to understand chronic pain and find effective non-opioid pain treatments.”
Now I am chagrined by my trusting naivete and lack of seeing the moral and ethical weaknesses of these appointed officials. Director Michael Botticelli, and perhaps Dr. Doug Throckmorton of the FDA, seem to be the exceptions. I silently overlooked their spurious and unsupported numbers, percentages and inflated representations. I trusted they were listening to the desperate cries for help from the millions of people I was representing. I and cadres of advocates worked harder and harder to educate them with solid facts backed up with quality references to show the very serious life-altering effect that undertreated and unmanaged chronic pain has on good, once-productive American citizens whose lives and dreams were dashed by the disease of chronic pain.
The CDC Guideline has far reaching effects. Their clearly stated intent is for every state to adopt their guidelines. Accessible, effective treatments do not exist for the majority of people with chronic pain. Prescription opioids exist because pain exists.
I was advised to always be respectful in my advocacy letters, calls to action, and conversations with federal officials because through listening and being civil, resolutions and answers would develop. I’m ashamed that I muffled my internal screams demanding mutual respect and concern for both populations (pain and addiction) and that I respectfully “discussed” points instead of demanding that action be taken to achieve parity in policy by our public servants in the federal agencies.
Whether one can exist, or have the will to live, with undertreated, moderate to severe chronic pain is not a negotiable point, and there are no compromises we have to offer. Despite its potential to help people with chronic pain and pre-existing conditions, insurance through the exchanges of the Affordable
Care Act is unaffordable to pay for, just like the deductibles. Paying for healthcare outright until a deductible is met equates to not having insurance at all. So millions of people in this very large American population are caught in a double whammy.
The CDC Prescription Opioid 2016 Guidelines are paving the way for Members of Congress and state legislatures to legally torture people who have chronic pain. They are simply turned away from health care because of the lack of accessible, effective integrative treatments to replace prescription opioids. The Comprehensive Addiction and Recovery Act passed with bi-partisan support wherein there was only a mention of preserving access to prescription opioids for people with severe pain. Congressional work to drastically reduce access to opioids is additionally harming millions of people who need them because there are virtually no accessible, effective alternatives for pain relief. Applying pain to coerce someone to say or do something against their will is torture. Intentionally withholding pain relief is also torture. To wit:
- There is no outcry in Congress for major research for pain to identify treatments to replace the opioids or even for parity in research for pain and addiction when looking at the sheer numbers of people affected. (More people are affected by chronic pain than heart disease, diabetes, and cancer combined.) People like me are on Capitol Hill trying to find champions to help us.
- There is no outcry in Congress to support and fund a National Pain Strategy or Federal Pain Research Strategy.
- There are no publicly announced plans in place by federal agencies to measure the impact of the prescribing policy changes on people with acute and chronic pain. Instead, mothers, wives, and people like me are on Capitol Hill begging for legislation to simply force the federal agencies to create reports back to Congress about the accessibility hurdles faced by people seeking pain relief. And then we’ll have to beg Congress to listen to the report.
- There is no outcry in Congress to force insurance companies or Medicare to pay for integrative treatments nor publicly announced plans to include pain as an Essential Health Benefit that must be covered by Medicaid in each state.
To rub salt in the wound, the CDC opioid guidelines do not use the 2011 IOM Report Relieving Pain in America for even one reference and state that only 11% of American adults have chronic pain, which is contrary to, and ignores the findings of, the IOM report that more than 100 million American adults have chronic pain (about 35%).
The National Fibromyalgia & Chronic Pain Association expects the U.S. Department of Health and Human Services to release a respectful, supportive, and funded National Pain Strategy and a robust Federal Pain Research Strategy to counterbalance the CDC Opioid Prescribing Guidelines released today. We also call on HHS to advocate well on behalf of the 100 million American adults with chronic pain whom they serve and who deserve no less.
Very sincerely yours,
Jan Favero Chambers, President/Founder
National Fibromyalgia & Chronic Pain Association