Attending a recent Oregon Pain Management Commission Meeting, patient/ advocate perspective

Oregon Advocate
Sep 1, 2018 · 10 min read

by Amara

Insight after attending the most recent Oregon Pain Managment Commission (OPMC) meeting in August 2018. This is an OP from the perspective of an intractable pain patient and advocate for human rights in health care.

I have enough real life experience to know when someone is being treated poorly, this was one of those times. It is an experience, to say the least, coming from a collectve group who’s main focus is supposed to be about the care and treatment of someone with conditions such as mine. It was made crystal clear that patients, advocates were not particuraly welcomed or wanted at this meeting. I felt an obligation though to observe and take notes. Other advocates waited outside, who did not feel welcomed by the OPMC. These patients deserved to feel welcomed.

The Pain Management Commission (OPMC) appears to be using the name “Pain Commission” now, removing the “management part” of the commissions name.

Some background on the Oregon Pain Management Commission

The OPMC is under the Oregon Health Authority. The OPMC oversees pain care for the whole state, not just medicaid with it’s primary focus being an “education module”.

In addition, it is also stated in their mission statement; The Commission represents the concerns of patients in Oregon on issues of pain management to the Governor and the Legislative Assembly.

While the OPMC may have begun (in legislature) with sound intentions, this is most certainly not what advocates are finding true today.

Oregon Pain Management Commission History and about: https://www.oregon.gov/oha/HPA/CSI-PMC/Pages/about-us.aspx

Full MISSION of the OPMC as it currently stands: The mission of the Commission is to improve pain management in the State of Oregon through education, development of pain management recommendations, development of a multi-discipline pain management practice program for providers, research, policy analysis and model projects. The Commission represents the concerns of patients in Oregon on issues of pain management to the Governor and the Legislative Assembly. The Commission develops a pain management education program curriculum and updates it biennially. The Commission provides health professional regulatory boards and other health boards, committees or task forces with the curriculum, and also works with health professional regulatory boards and other health boards, committees or task forces to develop approved pain management education programs as required. https://www.oregon.gov/oha/HPA/CSI-PMC/Pages/about-us.aspx

In the Legislation; The Pain Management Commission is established within the Oregon Health Authority. The commission shall;

(a) Develop pain management recommendations;

(b) Develop ways to improve pain management services through research, policy analysis and model projects; and

© Represent the concerns of patients in Oregon on issues of pain management to the Governor and the Legislative Assembly.

(2) The pain management coordinator of the authority shall serve as staff to the commission. [Formerly 409.500]

Chapter 413, Oregon Health Authority 2017 EDITION: https://www.oregonlegislature.gov/bills_laws/ors/ors413.html

Pain Education Module, OR Legislature: https://www.oregonlaws.org/ors/413.590

Pain Management Fund: https://www.oregonlaws.org/ors/413.580

Legislation OPMC: https://www.oregonlaws.org/ors/413.570

It states on the OPMC web site: The Oregon’s Pain Management Program was created by the state Legislature in 1999.

As one can see here: https://www.oregon.gov/DHS/PROVIDERS-PARTNERS/LICENSING/SafeMedDocs/Advancing%20Pain%20Management%20in%20Oregon%20module.pdf It states it began in 2001. Either way, it has been established for some time.

OPMC says to attendees, they are not involved with HERC or the Chronic Pain Task Force issues

Nora Stern, physical therapist and who appears to be the leader of the OPMC, explained to advocates/ patients who attended this meeting, that the OPMC is not involved with the Health Evidence Review Commission (HERC) or the Chronic Pain Task Force, so there is not a reason to stay for the meeting after testimony time.

Yet, here we see in the minutes, the OPMC is soliciting members of the OPMC to be members on HERC’s Chronic Pain Task Force, in April 2017.

OPMC meeting minutes dated April 2017: https://www.oregon.gov/oha/HPA/CSI-PMC/Meeting%20Documents/OPMC-4.27.2017-Minutes.pdf

Current Members of the Oregon Pain Management Commission can be found here: https://www.oregon.gov/oha/HPA/CSI-PMC/Pages/members.aspx

OPMC members who ended up on the Chronic Pain Task Force; Nora Stern PT, Catriona Buist PsyD, Kevin Cussaro DO, Amber Rose Dullea, Kim Jones PhD.

The OPMC posted it’s agenda the night before the meeting. Stating testimony would be first on the agenda. This last minute information was difficult for some to accommodate for testimony purposes, especially for patients with disabilities and pain. In the past OPMC, allowed public testimony at the middle and end of meetings. Agenda should be given earlier than the night before the meeting.

OPMC members want to revamp the current and long standing mission statement. It was stated, Staff member Mark Altenhofen Coordinator is almost done with the revamp of the mission statement. It appears the OPMC is not very concerned with issues of the public or patient representation, they see their work being solely that of education with thier new “pain module”. Another observation was how important accolades and notoriety seems to be, regarding the pain module. Nora discussed recognition and praise from the CDC regarding the module, she told the group, Stating someone at the CDC asked Nora about the “great things happening in Oregon” refrencing the pain module. Referring to an upcoming pain summit in Boston Massachusetts in September, Nora Stern and Catriona Buist (both members of the chronic pain task force) are presenting the module. Nora Stern used the term “evangelize” regarding spreading the module coast to coast and nationally.

New Patient centered Pain Module in the works

It was mentioned OPMC member, Kevin Cuccaro DO is working on a new module for patient pain education in addition to the Clinician module, this is almost completed. The members discussed co-branding and selling the module, that the OPMC can receive contributions in the form of DOJ “pain grants” to promote the module. An upcoming collaboration was mentioned with Australian pain expert Lorimer Moseley they seemed very excited about.

Back to the Mission Statement of the OPMC:

Oregon Pain Guidance / an anti-opioid group, is collaborating with OPMC and already stating a new mission statement for them on thier web site, omitting the patient concerns part. It reads;

“Oregon Pain Management Commission, The mission of the Oregon Pain Management Commission is to improve pain management in the State of Oregon through education, development of pain management recommendations, development of a multi-discipline pain management practice program for providers, research, policy analysis, and model projects”. https://www.oregonpainguidance.org/oregon-health-authority/oregon-pain-management-commission/

This could very well be the new mission statement. Please note, it has not been officially changed in the legislature.

Oregon Pain Guidance (OPG) is run by Lines for Life, who also operates Oregon Coalition for Responsible Use of Meds (OrCRM): https://orcrm.oregonpainguidance.org)

Lines for Life (CEO Dwight Holton): https://www.linesforlife.org/about-us/

https://www.linesforlife.org/blog/opioid-abuse-roundtable/

I suggest those concerned with transparency in Oregon state pain groups, take a look into these organizations above, and it’s political connections, grants, and collaborations with the OMA and OHA.

Under the OHA, there is the OPMC and also The Palliative Care and Quality of Life Interdisciplinary Advisory Council: stated in the OPMC meeting minutes on Feb 23 2017 (page 4): https://www.oregon.gov/oha/HPA/CSI-PMC/Meeting%20Documents/OPMC%202.23.2017%20Meeting%20Minutes.approved.pdf

“Denise Taray (former coordinator) presented the concept of a collaborative project or joint statement between the OPMC and the Palliative Care and Quality of Life Interdisciplinary Advisory Council to identify differences in the management of chronic pain vs. pain in the context of palliative care or pain associated with a serious and progressive condition.”

Question? Why was this collaboration not done? Where is the Pallative Care Council now in all of this, especially the chronic pain task force?

Palliative Care Advisory Council under the OHA: https://www.oregon.gov/oha/HPA/CSI/Pages/Palliative-Care-Advisory-Council.aspx

Question? Why does the OPMC’s Nora Stern claim that the OPMC is not in charge of the prioritized list changes for Medicaid? When, in fact, they have been heavily involved in the development/implementation of Note 60 Conditions of the back and spine (2016), and removing analgesics from the Medicaid prioritized list for back and spine. In fact, some members of the OPMC are also members of the Chronic Pain Task Force, who have drafted the new policy on the prioritized list change, that involves removing all longterm analgesics therapy for chronic pain conditions for medicaid members.

The OPMC appears to be dismissive, annoyed and disrespectful of the current plight of severe intractable pain patients in the state of Oregon.

OHA oversees itself essentially

At this time, and up until a few years ago, the Department of Human Services (DHS) and the OHA worked together as a unit with medicaid. They are now separate. OHA oversees the OPMC, the Palliative Care Council and the Chronic Pain Task Force, when members of the public have concerns with operations, protocol and transparency, they are directed to contact someone inside the OHA.

No Coordinator on staff for a few months in 2018

There was no OPMC Coordinator for a few months in 2018 — at the height of the chronic pain task force meetings. The Coordinator is also staffed with HERC and the chronic pain task force, who is supposed to be “the go between” person to take concerns of the public to these commissions, task forces and the like. The former Coordinator was Denise Taray. Mark Altenhofen is the “new” OHA staff Coordinator presently, they claim he is new but he has a long history with the OHA and the Oregon Health Plan (OHP).

At the recent OPMC meeting, Mark Altenhofen did not introduce himself to patient advocates or reach out for follow up, in fact, the best way to discribe it was snubbed. In the past in comparison, Denise Taray always made sure to communicate who she was and welcomed pateint input at the meetings and through email exchanges.

More about Mark Altenhofen, the new OPMC Coordinator

Director of HERC’s announcement of Mark Altenhofen:

“Dear Commission members:

I am pleased to announce that Mark Altenhofen has accepted the offer to be your new Pain Management Coordinator! Some of you may already know Mark from his past presentation at a 2015 OPMC meeting on his work coordinating with CCOs to develop nonpharmacological treatment programs (“pain schools”) in mainly rural areas of the state. Prior to that he had over 20 years of experience in pain psychology. He is currently scheduled to start on July 1st, so you can continue to go through me for OPMC matters until then, but (thankfully for me) he will be joining us in time to begin preparations for your August 23rd meeting”.

Darren Coffman, HERC Director OREGON HEALTH AUTHORITY

The new OPMC Coordinator is the owner of Pain Advisors and Pain School

Mark Altenhofen is the owner of Pain Advisors, and something called Pain School. Pain Advisors: https://www.painadvisors.com and Pain School: https://www.painschool.co/who-we-are/

Mark and the OPMC appear to collaborate with Oregon Coalition for Responsible Use of Meds (OrCRM) a service of Lines for Life: https://orcrm.oregonpainguidance.org/wp-content/uploads/sites/6/2016/10/Session-A-Altenhofen.pdf

Dr. Cat Buist and Mark Altenhofen

https://pdfs.semanticscholar.org/presentation/e7c7/53082f4b44fbaa10e77b200ef228a8d19fe2.pdf

Commission Staff with the OHA: https://www.oregon.gov/oha/HPA/CSI-PMC/Pages/Contact-Us.aspx

And here Mark is listed with HERC as policy analyst. https://www.oregon.gov/OHA/HPA/CSI-HERC/Pages/Contact.aspx

Records Requests of past OPMC meetings destroyed

Patient advocates attended some meetings in 2016 regarding opposition to Note 60 changes to the prioritized list for conditions of the back and spine. Patients gave testimony and received critical feedback. For example it was stated by OPMC members to patients, that exceptions would always be allowed in regards to analgesic coverages on the Oregon Health Plan. The audio or transcripts of this testimony for meetings in 2016 was officially requested by advocates. The records response, was they were unable to locate the transipts or audio. Information obtained by someone inside OHA explained the records are distroyed after one year (this needs to be looked into and verified). Because these records had been requested and no longer available, HERC had an emergency meeting regarding this issue, an inside source explained. Public testimony/records by patients and the replies from the OPMC are no longer accessible/obtainable. This is not right and could very well be a violation.

Closing Thoughts

The original constructs and mission statement of the OPMC was positive for the state. Oregon needs an oversight commission to ensure the state of Oregon is adequately caring for and managing Chronic Pain Patients. The Commission has shifted exponentially along with the Oregon Health Authority in it’s care, respect, treatment and attitude towards actual pain patients. It now appears thier education module (heavily set in group-think) is the primary focus. Coordinating with the OHA/HERC and the Chronic pain task force to fast track draconian state mandates that include involuntary tapers for Medicaid members is absolutely part of what the OPMC does and is doing. Sharing this module across the country, getting recognition for it’s creation seems to be what is paramount to the OPMC presently. Patients who live with intractable pain do not need more “terms” or “education” what we need are protections and our rights and lives valued.

The Oregon Health Authority’s HERC / VbBS, received more comments in opposition to the Chronic Pain Task Force proposal, than any other issues in the history of the Oregon Health Authority (by August 9th meeting). This was not even a topic of discussion by the Oregon Pain Management Commission. Why?

The Patients should be at the table, they should be actively sought out for input and feedback. I was allowed 4 minutes to testify, this subject was part of my closing testimony to the commission. The OPMC had to cut the meeting short by 30 min, to go to a “farewell” lunch for the OPMC chair, Cat Buist (they only meet a few times a year).

Some follow up emails have been sent to the OPMC on 8/23, 8/27 and 8/29 no varificaiton or reply has been recieved.

What we expect as patients is to be treated with respect and for these commissions (appointed by the Governor) to follow proper protocol. To base the work on what is in the best interest of the patients they serve, who are living with conditions that cause intractible pain.

I believe it is the commission’s job to represent the concerns of the patients of Oregon- on issues of pain managment. As patients, we desreve to be treated with respect. We expect commissions appointed by the Governor to protect and represent pain pateints. Whatever gear the commisison is in now, It does not appear to be aligned with thier origial purpose and it seems we have lost a legistlated ally. In our own lonely fight, it wold be nice to have one political body on our side, but regardless, we will continue on- exposing these kinds of injustices.


Additional links of interest:

The Oregon Pain Management Commission Education Module: https://www.oregon.gov/oha/HPA/CSI-PMC/Pages/module.aspx

Here is the module in slides form (easy access, do not need to sign up): https://www.linesforlife.org/wp-content/uploads/5.17.18-Team-Based-Care.pdf

Oregon Pain Guidance promoting the OPMC Pain Module, Authors info: https://www.oregonpainguidance.org/events/webinar-changing-conversation-pain/

Advancing Pain Management by the OPMC: https://www.oregon.gov/DHS/PROVIDERS-PARTNERS/LICENSING/SafeMedDocs/Advancing%20Pain%20Management%20in%20Oregon%20module.pdf

OPMC 2017 Legislative Report: https://www.oregon.gov/oha/HPA/CSI-PMC/Resources/2017%20Legislative%20Report.pdf

(unclear publishing date): https://pdfs.semanticscholar.org/presentation/8124/0992c8d48c10aa797c5ec1c856bab7732fac.pdf

OPMC “Your Pain Management team”: https://www.oregon.gov/oha/HPA/CSI-PMC/Documents/Your-Pain-Management-Team-exerpt.pdf

(origin page) https://www.oregon.gov/oha/HPA/CSI-PMC/Pages/manage-your-pain.aspx

OPMC medication and prescribing: https://www.oregon.gov/oha/HPA/CSI-PMC/Pages/medications-prescribing.aspx

National Pain Strategy on the OPMC website (under news): https://iprcc.nih.gov/sites/default/files/HHSNational_Pain_Strategy_508C.pdf

Webinar : https://register.gotowebinar.com/recording/viewRecording/6855916080380610563/5624991923273015811/natalya.seibel@q-corp.org

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