All of us who experience chronic pain are seeing first hand what is happening with the opioid epidemic and specifically, from the fallout of the 2016 CDC Prescribing Guidelines (https://www.cdc.gov/mmwr/volumes/65/rr/rr6501e1.htm): the abhorrent scrutiny patients and healthcare providers are enduring, forced tapering off opioids and most alarming, suicides. But what can one person do about it? Actually, a lot! It’s easier than you think to become a patient advocate and I’m here to walk you through my recent meeting with a U.S. Representative’s team.

After reading about Patient Advocate Cindy Steinburg testifying on Congress, my own mother was motivated to write her Congresswoman (I had no prior knowledge of her doing this by the way). Her letter was brief but very passionate. First, she complimented the Congresswoman on her efforts; second, she briefly told her the (continuing) saga of my long and horrific journey through chronic illness and pain. Finally, she concluded by asking for the Congresswoman to keep chronic pain patients and “the other side” in mind when it comes to issues involving the “opioid epidemic.” Her letter was thoughtful and engaging, and laid out the facts in a respectful and concise way. She was very complimentary and never used an angry tone or “blamed” the government for hurting pain patients. She merely brought the issue to the Congresswoman’s attention.

To our shock and delight, an assistant to the Congresswoman in D.C. responded and asked if my mom and I would like to meet in order to discuss the issues further! A meeting was then scheduled with the District Director and team of the Congresswoman.

While I am an Advocate for myself and others with chronic illnesses and pain, I have not been too vocal in the opioid epidemic. In my role as a peer support counselor and advocate, I speak to patients on a consistent basis who, for one reason or another, have had issues with being prescribed opioids for their pain. But neither my mom nor I were very familiar with the specifics of the opioid epidemic and fallout from the CDC Guidelines. So the race was on to gather statistics and issues affecting chronic pain patients. We went to work gathering research and working on an informational “takeaway” document to handout in our meeting.

The Meeting

As we walked into the Congresswoman’s office, we were nervous! Of course I had to bring various modalities for my comfort as we pain patients often do. We got inside and immediately saw the seal for the U.S. House of Representatives! It was very exciting and surreal.

Our meeting went very well. We had a main takeaway document for them which we also used as a guideline for our discussion. We also gave them a few handouts that corresponded to certain items mentioned in the document. (Please see the main takeaway document and links to the handouts below). Our meeting lasted over an hour and they were very receptive. They admitted they knew nothing of the issue from the “other side” and were very interested to know more. All they hear about in the media is overdose deaths and how opioids are horrible and addicting. It never ceases to amaze me how grossly uneducated people are in this country (and in particular the government) and it’s up to us to change that! If we don’t do it, who will?

The meeting was very conversational; we kept it professional, told them my (and my mom as my caregiver) story of chronic illness and pain and simply educated them on the facts without getting angry or emotional.

Interestingly enough, one of the team members experiences debilitating migraines where she even has to miss work on occasion! She also isn’t allowed opioids for her chronic pain and said nothing helps – so like millions of others, she basically has to grin and bear it, effectively making her part of the huge burden cost of pain on society (which is almost 700 billion dollars annually).

The mere fact that she experiences chronic pain allowed us to develop a rapport. At least she understands and has a personal stake in the plight of chronic pain patients. I told her about some of the therapies I use for my migraines and even referred her to my doctor! You never know how many people in the government have chronic pain themselves or have a friend or family member with chronic pain.

Considering there are approximately 100 million of us who suffer from some form of chronic pain in America, and 20% of those deal with intractable or high-impact pain, it is inevitable that our representatives in Congress will know someone who suffers. The bottom line is that we are 100 million potential voters – so they should be interested in and listen to what we have to say, right?!

To my amazement, they mentioned that the Congresswoman might want to attend one of the support/empowerment group meetings I run to gain additional insight from patients! She’s the one who brought it up! Of course I was elated and told her we would love to have her and her team attend.

The meeting concluded with the team thanking us for coming in to speak with them and for the invaluable education. Of course we thanked them as well and told them we would be sending an electronic copy of the handouts as well as additional resources on the topic. We felt good and proud about what we had accomplished – we have now educated an elected official (and her team) who has the power to make real lasting changes in this country – and so can you!

ADVOCACY RESOURCES

State by state legislative contacts:

https://www.ciaag.net/legislative-contacts.html

Takeaway Document given to the team:

“Discussion – Issues Affecting Chronic Pain Patients” (April 22nd, 2019)

Congresswoman Bath Discusssion Takeaway Document – April 2019 – Modified Version for NPR Article

Links to handouts mentioned in document:

HP3 Letter (March 6th, 2019)

https://healthprofessionalsforpatientsinpain.org/

HP3 Press Release and CDC Response Letter (April 10th, 2019)

https://healthprofessionalsforpatientsinpain.org/press-release

https://img1.wsimg.com/blobby/go/3d70257f-a143-4a5b-b9df-f7d265df0d3d/downloads/Alford%20Final%20.pdf?ver=1554957603807

U.S. Pain Foundation Position Statement – “Balancing Pain Management and Opioid Reform”

https://uspainfoundation.org/wp-content/uploads/2018/02/Balanced-access-to-pain-management.pdf

U.S. Pain Foundation – Pain Management Best Practices Interagency Task Force (Draft) Report

https://uspainfoundation.org/advocacy/inter-agency-task-force-toolkit/

Links to additional resources:

YouTube video from LasVegas NOW – KLAS-TV8 “Our Pain. The Other Side of Opioids”

https://www.youtube.com/watch?v=FzY2tIU83II&feature=youtu.be

Article from The New York Times – “Good News: Opioid Prescribing Fell. The Bad? Pain Patients Suffer, Doctors Say.” (March 6th, 2019)

https://www.nytimes.com/2019/03/06/health/opioids-pain-cdc-guidelines.html

Article from The Washington Post – “The Problems with One-Size-Fits-All Laws on Opioid Prescriptions” (April 4th, 2019)

https://www.washingtonpost.com/outlook/2019/04/04/problems-with-one-size-fits-all-laws-opioid-prescriptions/?utm_term=.daf27efa7563

Article from Reason magazine – “America’s War on Pain Pills is Killing Addicts and Leaving Patients in Agony” (April 2019)

https://reason.com/2018/03/08/americas-war-on-pain-pills-is/