HHS Pain Task Force Holds Its Inaugural Meeting
The U.S. Department of Health and Human Services (HHS) Pain Task Force held its inaugural meeting in May 2018 that included a public comment period. Members of the public had also been invited to submit their comments about chronic pain online, and the site received 2,530 posts.
On June 9, the Food and Drug Administration (FDA) held a public hearing on chronic pain. The FDA is inviting chronic pain patients and other members of the public to post their comments online through September 10, 2018.
It seems to be a good sign that government agencies are now open to hearing the stories of chronic pain patients. People like Rebecca Sidden, who was one of a number of distinguished speakers at the HHS meeting, may be their own best advocates. As we work to mitigate the opioid crisis, we must recognize the needs of chronic pain patients and provide them the treatment they need.
Rebecca has agreed to share her comments on this blog for the benefit of those who did attend the meeting. Unfortunately, as you will see, Rebecca’s story is not uncommon.
Rebecca Sidden Shares Her Story at HHS Pain Task Force Meeting
Hi, my name is Rebecca Sidden. My story starts as a 22 year old graduate school student diagnosed with a rare condition known as Interstitial Cystitis, which is an auto-immune response in the Bladder Lining that results in constant pain. Along the way in my pain journey, attempts to treat the IC have resulted in complications leading to Pudendal Neuralgia. As a result, I can no longer sit for any extended time and require a special cushion and ice when I do sit. A good pain day for me is usually achieved by resting in a prone position and a medication protocol that includes the responsible use of Opioids.
Over the last 20 years, I have worked with a variety of specialists and attempted pretty much every treatment protocol; physical therapy, yoga, acupuncture, spinal stimulators, TENS, Botox injections, Radio Frequency Ablation and nearly every possible pharmacological solution and only two protocols have proven consistently successful: Pain management using Opioids, and CT Guided Nerve Blocks utilizing steroids. The latter has been losing efficacy over the last decade and in 2014, what is usually a routine procedure went awry resulting in the needle directly hitting the nerve and reversing a decade of positive progress. It was at that point, I finally had to retire from work and focus on my health. I would like to call out that I have a fantastic support system and a wonderful husband that keep me with a sense of humor during all this.
Although we have tried almost every alternative to the Opioids, from Anticonvulsants to SSRIs, we consistently return to a combination of Opioids and Lyrica to successfully manage the pain. A protocol that I have used, with only minimal change, for over a decade. In fact, almost every major change to my medication has been due to new regulations from competing federal agencies. The FDA drives a change, my pain management team adjusts and then the CDC intervenes resulting in another change in which I must endure repeated experimentation before returning to some degree of balance. To make matters worse, now the Insurance Companies and even the Pharmacies try to exert their less informed opinion on my pain management protocol; and now we have politicians with even less knowledge doing the same. The result is a landmine of sometimes conflicting regulations that combined with almost constant harassment by the DEA and State Medical Boards, almost make it impossible to find a pain management provider and when you manage to find someone, you have to submit to contracts and drug testing.
I am not saying that Opioids are the solution because they most definitely are not, but when the alternative is pain similar to that experienced by a second degree burn patient, I will live with the side effects until something comes along that gives me a viable alternative.
As a Social Worker, who served for 15 years as the Executive Director of small Non-profit serving families in crisis, I have seen firsthand the terrible toll that addiction can have on families, but in our rush to address this very real issue, we risk causing more harm than good to people in the Chronic Pain community.
The Hippocratic Oath states that above all else, do no harm…something I think that is missing in our current environment. Thank you for your time and the opportunity to talk to you.
People in Pain Can Make a Difference
It takes courage for people in pain to speak up. However, the rest of the world needs to hear what people in pain are experiencing. Change will not occur without efforts like Rebecca’s. I hope her message will inspire more people to tell their story at similar meetings, write op-eds in local newspapers, create blog posts, and write their Congressmen and Senators. I encourage everyone, whether or not you are in pain, to submit your comments to the FDA docket before September 10. If people in pain speak out, it may make all the difference.