Guest Editorial: Save Oregon Letter Writing Campaign – “A national focus is needed”

Guest Editorial: Save Oregon Letter Writing Campaign – “A national focus is needed”

By an Oregon Advocate.

The Oregon Chronic Pain Task Force proposal of forced taper from opioids for Medicaid patients sparked a national debate—-a debate that has made a mark. If public attention hadn’t been brought to this issue, the proposal would have long passed back in August of 2018. As it stands now, the vote is set to take place March 14th, 2019 (meeting details below. A meeting March 14th of the Value based Benefits Subcommittee (VbBS) in the morning and the Health Evidence Review Commission (HERC) in the afternoon. HERC has promised to give ample patient and expert testimony time at this particular meeting.

This is not just an issue for Oregon patients or Medicaid. If implemented, this will reach far beyond Oregon borders. This will serve as a precedent for all insurance payers and a reference guide for all other states.

We need your help. A letter writing campaign is underway to help influence change. We’ve created some form protest letters or you can write your own. See below.

Update on proposal: One week before the January VbBS/HERC meeting on January 17th, some new revisions by HERC staff were added to the Chronic Pain Task Force proposal. This would technically be the second revision since public objections. To reiterate, the public has had no concerns pertaining to adding complementary services to Oregon’s Medicaid program such as CBT, yoga, massage, acupuncture, etc. What the public and expert objections highlighted was the prohibition style forced tapers to zero of all long-term opioid therapy for all chronic pain conditions, which are contradictory to scientific literature.

Patient advocacy, experts and respected institutions have interjected, the four chronic pain areas once on the chopping block are now aligned with the present national standards. A win on this note, if voted on as is on March 14th. As it stands now, those patients should be allowed opioid coverage on OHP if appropriate. Yet, chronic pain for ALL Back/ Spine/ Neck conditions as well as Fibromyalgia will NOT be allowed any long-term opioid coverage and are still being subjected to forced tapers to zero.

If implemented, this policy could extend beyond the borders of Oregon. Because knowledge is power, the goal of patient advocates is to arm as many individuals as possible with the background information and intricacies inside the OHA. We believe the OHA will continue to overreach. Bias and agenda are the rule right now, and until oversight and accountability are mandatorily implemented into the system, the overreach will continue.

Next steps are clear and will require a monumental outpouring from the community. This letter writing campaign has been enacted to facilitate change within their system.

Located in the Oregon Pain Action Group Google Drive are instructions, form letters broken into different critical categories and a suggested contact list is provided; https://drive.google.com/drive/folders/1s0RNbCjx9Ek-SxnCJp_flafx4VRIln_R

Please join in our campaign. This is rare opportunity to affect change for patients that face the most radical, authoritative blanket pain policy ever enacted in the U.S. This is a national effort.

Important Links

1.)  The Chronic Pain Task Force highlighted disturbing aspects inside the Oregon Health Authority operations to advocates and experts in the field of pain as well as addiction. It became clear that the complexities and confusions surrounding all manners of pain policy development within the Oregon Health Authority and the powerful groups who advise them, required a comprehensive, investigative style reference article.
Caylee Cresta visited Oregon for the last Chronic Pain Task Force meeting December 5th, 2018 and dedicated significant time working in collaboration with local Oregon advocates and experts to assimilate a thorough compilation of the current events related to pain care transpiring in Oregon.
Her article can be found here. OREGON THE DEATH OF COMPASSION IN THE SANCTUARY STATE: https://medium.com/@caylee.cresta/oregon-the-death-of-compassion-in-the-sanctuary-state-237cef708b1c

2.)  Oregon Pain Action Group Google Doc, Instructions, form letters, contact list: https://drive.google.com/drive/folders/1s0RNbCjx9Ek-SxnCJp_flafx4VRIln_R

(The form letters were created to act as a guide, inspiration or as the actual letter. Please personalize each letter as much as possible. The contact list is also a suggested guide, please feel free to add additional contacts.

3.)  Health Evidence Review Commission (HERC) meetings page:

https://www.oregon.gov/oha/HPA/DSI-HERC/Pages/Meetings-Public.aspx

4). Most recent CPTF proposal update (see section 4.0 Biennial Review, Chronic Pain Task Force Proposal and HERC Staff Suggested Revisions)

https://www.oregon.gov/oha/HPA/DSI-HERC/MeetingDocuments/VbBS-Materials-1-17-2019.pdf

The author asked that we not provide a name, but it is a person that the National Pain Report has been in constant contact in the past several months. The National Pain Report has reported extensively on the Oregon issue. For past articles, see here.

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In my opinion until this mess we are in with the government what has happened to us is on the far back burner and will stay there. One idea, those who can we send a version of our stories to the editor of our local newspapers. If we sent our stories all in the same week maybe someone will print it. A friend did and it was printed in her local newspaper. We can include what Oregon in the letters discrimination, a group of people that have a disability, all of our rights guaranteed in the constitution, our bill of rights for how we should be treated as patients, abandoned by our doctors, truth of the new CDC guideline numbers from the 2016 overdose report, the AMA report that condemns the guidelines, pharmacies who will not fill prescriptions even for cancer, the reports about how fentanyl comes into our country, the false reports that started this mess to begin with, a few thoughts from the research I have.

ecanarensis

As someone who’s been as active as my issues allow me to be in Oregon for a long time, I laughed out loud when I got to “HERC has promised to give ample patient and expert testimony time at this particular meeting.”

Riiiiight. At the last meeting I spoke at (September), they initially promised us 6 minutes apiece. Then 3. Then at the beginning of the meeting, they announced that we’d get 90 seconds. I was in charge of rebutting their “evidence” (reviewing their bibliography). Even if I ignored the 1100 page unpublished draft (believe me, I did) even 6 minutes was nowhere near enough to address the idiocy of their so-called “evidence.” They don’t want to hear from us, they don’t listen to us, they don’t even listen to medical professionals that have written & flown across the country (a group of which they barred from speaking at the August meeting). The supposed concessions they’ve given have been minimal & VERY grudgingly given; this bunch is impervious to reason, data, evidence, argument, ethics, and sanity. The only possible way to divert them at all is to get a national movement screaming (but screaming in a sane way) down their doors.

Those who are having trouble with the form letters, a few points: there is more than one form letter because there is more than one issue that people may want to comment on. They can be modified for those who want to. Please, use them! Write as many people as possible, and (difficult tho I find it most of the time), be as reasonable & rational as possible. I am utterly enraged at these zealots, but if we sound deranged, we’re not going to be given any credence. If we don’t want to be treated like wacko addicts we need to make sure we don’t sound like wacko addicts.

Jackie L Cross

So, essentially, despite the fact that a person had worked as long as their painful disorder allowed them to, once they’ve become debilitated to the point that they can no longer work & subsequently wind up on Medicare/Medicaid, they lose their Civil Rights and rendered even further disabled due to lack of appropriate and adequate pain control. Oregon is basically saying that the poor & disabled don’t deserve proper treatment, hence, only the rich do???
Whatever happened to “Bring us your weak, your tired, your poor…” & the Medicare/Medicaid Act, as well as the Social Security Act which both state that the “Government cannot interfere with matters of medicine..” Let alone our 5th & 14th Amendments Rights of the U.S. Constitution; which both state that every U.S.Citizen “[is created equal by their Creator and are guaranteed these certain inalienable Rights to the Pursuit of LIFE, LIBERTY & THE PURSUIT OF HAPPINESS..]”; the 1961 International HUMAN RIGHTS Laws “[Countries must provide pain treatment as part of their core obligations under the right to health; failure to take reasonable steps to ensure ppl who suffer from pain have access to adequate pain treatment may result in the violation of their obligation to protect against cruel & inhumane & degrading treatment]”… as the HIPPOCRATIC OATH to ‘[First do NO HARM]” goes flying out the window.

I can go on and on… as a person who was a 1st Responder/ Paramedic/ EMS Instructor until I could no longer overcome the debilitating pain of hEDS & was subsequently rendered disabled by one of the top 4 most PAINFUL conditions known to man, 2 decades ago; though I could no longer be the “HERO” I once was, I still managed to raise 2 stellar young men, my sons, alone, as my husband & father of my 2 boys died 1.5 years after I became too ill to work at the career I absolutely loved. But, I did, because I had adequate, dignified, compassionate PAIN MANAGEMENT.

This is NOT my AMERICA!!!

David W Cole

Thank you, I’ll be sending them more letters. These people are torturing us, where does it say in the Constitution it’s okay to torture us?

Pamela Lee

ANYTHING Kate Brown can do to produce an improved balance sheet for the State of Oregon. Yes, this is strongly supported by her. Be that as it may, why target one of the most fragile population in the state? It’s telling them they are worthless because of their pain and financial status.
PLEASE email/write expressing your journey and how pain meds help you be a productive member of society.

Koa

OREGON has made this process purposely confusing, frustrating patient advocates for months. We’ve tried to simplify the campaign process, but we’re aware it remains a challenging amt of information to absorb.
Pls peruse Caylee Cresta’s Medium article which summarizes not only the radical policy to be implemented, but also the immense amount of conflict of interest & bias of voting panelists involved in the process the OHA has created to circumvent the usual scrutiny a state legislature vote. These kinds of policies will continue to be imposed upon patients if OHA is allowed to continue without oversight & accountability.
Next, there is a file INSTRUCTIONS:GUIDE SAVE OREGON CAMPAIGN
Pls read this carefully as it has the instructions for writing to the contacts, & includes reasons advocates are opposing the policy implementation and reasons to investigate the process OHA uses to spend federal funds on unequal access to care. There are several different main points which each correspond to a form letter. If this point resonates with you, please fill out the corresponding letter. The number of contacts you’d like to send each form to is up to you. Of course, these form letters were provided to be used as is, as example or as inspiration. Patients are also welcome to write their own letters, in hard copy if desired, or electronically.
You may send as many or as few of each corresponding letter as you prefer. Only Oregon contacts are provided, as we must stop not only this policy, certain to cause catastrophic harm &suffering to patients in Oregon &all other states, but the biased, unbalanced practices OHA uses to easily implement harmful policies must stop as well.
We would prefer to have all letters in by March 4th to be sure they will be considered.
So many patients are suffering now, & if they chose to send 2 letters a day until March 4th, we would have the outpouring necessary to stop this & future harmful policies!♡

How is a bed bound person yelling with pain supposed to fill this out? REDICULOUS!

Daisy Jorge

Where in New BEDFORD, Ma., 02746 could we get helo

Why are they killing the CHRONIC PAIN PAIENT??? We did nothing to deserve pain like a genetic mistake. CMT 2. 20 years of pain and now a gruesom death at the hands of Satan himself and his followers. You want change? You got it.

Linda N Coffman

Thank you! I was born in Oregon, have family still there and want to move back. As a breast cancer survivor stage 3 C I have several diseases from the cancer treatment. Most serious is Chemo induced peripheral neuropathy. Without my pain medications for the past 10 years, I would not be teaching middle school math and hopefully have touched thousands of kids lives. The policy Oregon wants is inhuman. I would not wish even my better days on a healthy person, but I do wish they could spend a few hours in my body. Pain takes so much from our lives, the correct doctor approved treatment allows us some dignified moments and let’s many of us continue being a valuable asset in the workplace. I will be writing letters. Thank you for the google drive information! You made it easy!

Jeanne

This is great. I printed out the documents and will send them in as instructed. Thank you!

ElizabethR

I wonder if it would be possible to clarify or at least narrow down the list of contacts for out of state correspondents. Which contacts are pivotal to the cause on a “global” or national basis? (I live in a state contiguous to Oregon.) I definitely want to participate in this campaign, but six pages of contacts is pretty overwhelming. Also, I wonder if a shorter, more personalized letter might be more helpful than copying a form letter.

Thanks for guidance anyone may provide.

Paul Bartolini

I was forced tapered by the Curry Medical facility in Brookings. Doctors were terrible, uncompassionate and treated me terribly. They have ruined my life with their lack of professionalism and had me start a taper at more than 50% of the medication that I was taking before. I am moving away from Oregon because I simply couldn’t get good medical care no matter how hard I tried. It’s pathetic that in America any patient would be treated like this. I’ve been in chronic pain since 2009 and on pain meds for hernia mesh repair for 10 years. The opioids help with my pain and allow me to move around and do things. Since I went to this so called pain management facility they have done nothing but make my pain worse.

Cindy

Does anyone understand the pdf that gives an email address and then a list of people but with no individual email addresses? I have no idea what to do about those names. It’s the second pdf in the second link. Entitled: Save Oregon Contact List”.
It gives one email address for the org, and then a list of names with no individual email addresses. And so why not just send an email to the email address given w/no names?
Very confusing.

ALso, the lines thru the Captcha verification code today make it impossible for me to see 2 of the letters there are for me to type to get this thing posted. And this happens way too often. NPR needs a better system of verification.

Jan

I am sorry, but you have blown away any chance of getting anyone to do this, because you have over-complicated something that could have been made so simple! I have teaching degree and I clicked on every link listed. Some have nothing to do with someone writing a letter to Oregon HERC!

I had to download something and there were at least 6 or more letters to choose from so small you couldn’t read. So then I had to guess from the titles which was the Form Letter. Then I have no idea where to email it to OR if we are supposed to write a letter and mail. If so, where? What are the addresses for either emaing or writing?????

PLEASE REDO THIS WITH JUST THE BASICS (LINK FOR JUST THE FORM LETTER AND THE ADDRESS TO SEND WHETHER EMAIL OR WRITTEN LETTER!
OTHERWISE YOU ARE LOSING PEOPLE! THANKS

Gary Raymond

These task force sadomasochists are forgetting one fact: Chronic pain exists until death. Therefore, addiction is inconsequential. I am addicted to high-potency insulin. Take that away too. These government sickos can play with themselves while my limbs are being chopped off and withhold pain medication after each procedure. This is a true scenario in Lynchburg, Virginia. The man in the hospital with me had his leg amputated and they gave him a prescription for Tylenol. I heard his doctor say, “This is the best I can do.”