Living with conditions that cause an incredible amount of pain, daily, was never part of how most patients envisioned their future. Coming to terms with this reality and coping with progressive diseases is a long and personal and honorable journey.
At the last Health Evidence Review Commission (HERC) meeting on March 14th, 2019, there was a pause on a vote to pass a dangerous proposal drastically affecting Oregon’s Medicaid population. The pause was initiated because there is a possible conflict of interest for a decision maker that wasn’t disclosed and needed to be investigated.
The chronic pain task force (CPTF) Medicaid proposal, if passed, will require those with Fibromyalgia to completely taper off their pain analgesics. It will put limits and restrictions on medication for four broad pain conditions, as well as updating and stiffening a requirement for those with painful conditions of the spine, back and neck (updating Guideline Note 60 from a previous proposal). Readdressing Note 60 will force a complete taper of pain medications for conditions of the spine, back and neck with a mandated date of completion. Public attendees at the HERC meeting were told the CPTF topic (including the vote) had been tabled and the meeting would focus on other health topics. Attendees, who were expecting to testify, were still allowed to do so with a three minutes time limit. Because their topic was tabled, as soon as the public comment time was over, the chronic pain attendees left.
The Oregon Health Authority opened the Value-based Benefits Subcommittee with a statement informing attendees of the pause, It was reiterated at the beginning of the HERC portion of the meeting in the afternoon. You can find the OHA statement here. “OHA director pauses review of chronic pain benefit changes in Medicaid program pending independent review, in light of potential conflicts of interest by staff.”
It is important to note, this investigation needs to encompass not only the chronic pain task force proposal but the 2015 Back Reconfiguration task force. Oregon’s Medicaid Guideline Note 60 in particular, because of the possible conflict of interest present in that proposal as well. You can find out more about Guidelines Note 60 in this Lines for Life presentation Ariel Smits MD, who advises the chronic pain task force and the past Back Reconfiguration task force.
In addition, the 2015 Back and Neck Guideline Note 60 was passed without enough evidence. This shouldn’t have been allowed from an “evidence-based” committee. Without any evidence to support the guideline, HERC relied entirely on “expert opinions.” Further investigation (and this has been confirmed by the Oregon Health Authority) revealed the expert were all members of the task force itself. If the members of these task forces, committees and commissions are fundamentally relying on opinions from themselves, and not evidence, major issues can arise and curtail a policy based on beliefs, perspectives and possible biases and conflict of interests. In the words of Dr. Cuccaro himself who is on the HERC (you’ll hear him say this on the audio from the last meeting), “you cannot escape your biases.” Such as in the case being investigated now, that goes all the way back to the Back Reconfiguration task force and guidelines note 60, where there was lack of evidence to solidify removing opioid coverage for all back and spine conditions. We know of three “experts” total (members of the task force) who are now being investigated for financial conflict of interest. They are currently active members in the CPTF and HERC, and were a part of the previous proposal.
The quality of the call-in line (listen in only) to this particular HERC meeting was abysmal. It was virtually impossible to make out what was being said for the majority of both the morning Value-based Benefits Subcommittee (VbBS) and the afternoon’s Health Evidence Review Commission (HERC) meeting. Many chronic pain patients were unable to attend because of their disabilities and the call-in option is the only way for them to be present at the meeting. It was frustrating when the accommodations provided for the disabled are unusable. It should be the job of government agencies to make accessibility easy for the patients affected by potential decisions, not difficult. In lieu of being able to hear the meeting via the phone, and as a part of advocating for those unable to attend, audio recordings were immediately requested. The conversation that ensued after the chronic pain attendees left was very upsetting.
The call-in line continued to be sketchy at best. For the few who continued to attend the meeting via phone, at some point it became clear that there was further discussion happening about the chronic pain task force proposal—specifically the pause and conflict of interest topic. We waited for the audio recording from the public records department to hear the continued discussion, we were told would not happen during the meeting. We have sectioned this part of the conversation adding it to the beginning of the recording to allow for time constrains.
The audio can be found here and includes two parts. The introduction to the HERC meeting and explanation of the pause from the head of the OHA begins at the 40-minute mark. From the beginning of the audio to the 40-minute mark is the discussion of patients and advocates.
Some examples of the discussion include; @9 min 36 seconds Holly Jo Hodges MD says “I didn’t know what today was going to be like and wondered, did I need to bring my husband with me to walk with me (giggling). I mean, I did not know what to expect based on the amount of hysteria that seems to have been stirred up in their misunderstanding”.
@13 min 9 seconds, Kevin Cuccaro DO says “But everybody has some sort of conflict of interest because you cannot escape your biases. And what is a little disturbing to me and I understand trying to be completely transparent, but having looked at some of the evidence that is being put forth in support, and some of the people that are testifying supplying information, the conflict of interest that “they” have isn’t being revealed”.
We will leave that here. Further written transcripts are available by request by contacting The Oregon Pain Action Group. We welcome comments regarding your reaction to this audio, either here or please send an email to: firstname.lastname@example.org.
In policy-making and committees who make decisions drastically affecting lives, there is a vast difference between patient advocates biases and those of the health policymakers (task force and committee members). Policymakers are deciding on the fate and lives of patients care, and their future. There is a level of conduct and respect that is essential when serving the public (and in this case a very vulnerable population with complex disabilities) in this manner. Clients’ biases, do not impact the wellbeing of the policy-makers, they do not potentially cause harms to their lives. The reverse cannot be said. The burden falls to the group with the power, but not to those defending themselves.
For patients and advocates, it takes courage to expose and open oneself up to testify at public meeting such as this. Patients deserve to feel safe, respected, heard and welcomed sharing personal health stories and insights of disabilities. Their input should be valued, and received as important information. There should be professionalism among the committee members, and courtesy extended to patients who are attending in order to give valuable information. Patients are experts too; they are living experts. Generalizations are dangerous, lumping populations together is dangerous, and contention breeds bad policymaking.
While it is hurtful how some members of HERC refer to patients and their testimony, this is not about feelings. This is about evidence or lack thereof. It is about making policy on a grand experimental scale for a very vulnerable population, a population who cannot acquire additional insurance coverage or pay out of pocket, this is the essence of Medicaid. It is about National and world-renowned experts who have interjected with facts, scientific evidence and dire warnings of harms. It’s HERC’s obligation to make sure their personal feelings about the disabled and the committees biases don’t get in the way of making evidence-based decisions that is in the best interest of the population they serve.
We believe it is not too much to ask, that this policy be corrected, that experts and patients are listened to and basic professional conduct is presented that is void of discrimination or contention. There is no place for discrimination in health policy, that’s why all policy should be evidence based without bias.