On March 13, 2014, the Value-based Benefits Subcommittee decided NOT to add fibromyalgia to the list of conditions covered by the Oregon Health Plan (Medicaid).

You can read more on the history of this issue in the following three blog posts:

• Get Fibromyalgia Covered by the Oregon Health Plan (Medicaid) (9/28/2013) 
• Value-based Benefits Subcommittee Votes To Consider Moving Fibromyalgia Above Line (10/17/2013)
• Will Outlier Oregon Move Fibromyalgia ‘Above the Line’? (1/6/2014)

Fibromyalgia Treatment Not Covered Under Oregon Health Plan

From September 2013 through March 2014, a collection of doctors, researchers, patients, and advocates have been petitioning the Value-based Benefits Subcommittee (VbBS) of the Health Evidence Review Commission (HERC) to re-score fibromyalgia so that it would be covered for Oregon Medicaid patients (those on the Oregon Health Plan).

Today, we received the final decision on that scoring. Fibromyalgia is still below the line of funding. This means that Oregon remains the only state in the US that does not cover fibromyalgia treatment.

How it works in Oregon

Let me give you a primer on how all this works here in Oregon. (Dunno how other states decide these things.)

First, you need to understand the difference between Medicare and Medicaid.

Medicare is where the federal government (the good ol’ US of A) pays for your medical care. Medicare is open to people who are 65 or older, and those who meet criteria for certain disabilities. There are different types of Medicare plans.

Medicaid is a state-run program. This means that every state can make its own decisions on who or what to cover (with a few federal guidelines). Here in Oregon, this state program is called the Oregon Health Plan. There are also income requirements, meaning that you can’t make much money if you are on Medicaid. (When I checked back in October 2013, the limit was $20,000 per year.)

Second, there’s the whole process of what to cover on Medicaid.

Here in Oregon, we have the Health Evidence Review Commission (HERC). From their website, “The Health Evidence Review Commission reviews medical evidence in order to prioritize health spending in the Oregon Health Plan and to promote evidence?-based medical practice statewide through comparative effectiveness reports, including Coverage Guidances, health technology assessments and evidence-based practice guidelines.”

The HERC uses a Prioritized List methodology to rank health services. They have a formula that takes into account various factors, such as: pain and suffering, need for service, effectiveness of treatment, and more. (Update 3/4/15: January 2015 prioritized list.)

Part of the HERC is the Value-based Benefits Subcommittee. This is the committee we have been meeting with. They review conditions every two years to update the list based on new research and treatment options.

In October 2013 we felt like we had won a victory

At the initial hearing, back on October 10th, 2013, the VbBs began by recommending keeping fibromyalgia as part of line number 634, “Disorders of Soft Tissue”. (Meeting minutes can be found here.)

Fortunately, the committee accepted expert and public testimony from:

• Dr. Robert Bennett, Oregon Health Sciences University (OHSU)
• Dr. Kim Jones, OHSU
• Dr. Ginevra Liptan, Legacy Good Samaritan Primary Care Clinic
• Jan Chambers, President/Founder, National Fibromyalgia & Chronic Pain Association
• Tamara Staples, President/Founder, Fibromyalgia-ME/CFS Support Center, Inc.
• Tami Stackelhouse, Fibromyalgia Coach and Vice President/Founder, Fibromyalgia-ME/CFS Support Center, Inc.
• other patients and support group members

By the end of the October meeting, the VbBS had voted to review the 200+ fibromyalgia studies that had come out since their last review in 2008. They would then talk at their January 9, 2014 meeting about re-prioritizing fibromyalgia in light of those new studies.

In January 2014 we felt like we had won a second victory

The experts and advocates who provided testimony at the October 2013 meeting (above) pleaded with the committee yet again to move fibromyalgia to a line that would be covered. (January meeting minutes can be found here.)

Doctors and patients expressed the need for proper treatment

One patient testified that once her chronic back pain progressed into a diagnosis of fibromyalgia, she went from having coverage (back pain) to no longer receiving treatment (for fibromyalgia). Another patient described having to be on two different blood pressure medications — but when her fibromyalgia was properly treated, they were no longer needed.

All of us explained, in our own ways, that proper treatment can mean the difference between disability or a productive life with fibromyalgia.

At the end of the January 2014 meeting, the VbBS agreed that fibromyalgia should be prioritized differently than it was at the time, which would definitely result in it moving higher on the list of covered conditions. They also agreed that fibromyalgia should have its own line, since the ICD-10 will be coming out in October 2014 and fibromyalgia will have a dedicated diagnostic code. (Note: the ICD-10 has been delayed and is scheduled for release in October 2015.)

What the VbBS could not agree upon was the impact that fibromyalgia has on patients lives (pain and suffering, impact on lifestyle, etc.) and the effectiveness of current treatment options. The committee voted to revisit this discussion at their March 13, 2014 meeting, after reviewing current research on these two matters.

Today we have a partial victory

At today’s VbBS meeting, the committee started off by going over the current scores they had given fibromyalgia in the various areas (as described in the Prioritization Methodology). They used osteoarthritis as a comparison, and were scoring fibromyalgia similarly.

The committee then heard testimony from Dr. Bennett, Dr. Jones, and Jan Chambers. Here’s some particularly interesting points from their testimony:

• The doctors said that while the committee was trying to score fibromyalgia in a way that was similar to osteoarthritis, fibromyalgia is actually more similar to rheumatoid arthritis. They also agreed that fibromyalgia is worse than RA in terms of pain and it impacts patients’ lives.
• Dr. Bennett quoted a study from Denmark on the mortality of fibromyalgia patients. In this study, it was found that fibromyalgia patients had a 19 times higher suicide rate than the average person. *
• In a survey conducted by Dr. Bennett for the NFMCPA, 39% of fibromyalgia patients said that they have contemplated suicide. Based on a 2010 study, only 7% of osteoarthritis patients have considered ending their lives. ^
• Jan Chambers used a clothes pin and sandpaper to try to give the committee a small taste of life as a fibromyalgia patient. She asked them to clip the clothes pin to their finger, then rest their hand on the sandpaper. She asked them to stay that way during our testimonies. The constant pressure (and then pain) of having the clothes pin clipped to your finger gives an idea of what it’s like to have constant pain (only we can’t take the clothes pin off!). The sandpaper demonstrates what it’s like to have allodynia (painful skin sensation). Jan also testified that for people with serious neck pain in fibromyalgia, restoring the cervical curve and reducing forward head posture will reduce fibromyalgia symptoms.

I was also able to give testimony and present our petition, which has nearly 1,000 signatures, asking the VbBS to move fibromyalgia above the line of funding.

In the end, the scores the committee gave resulted in fibromyalgia being placed around line 534 (vs. line 634 previously). The current budget for the Oregon Health Plan covers lines 1 through 476 on this list. ˜

The Good News (yes, there is some)

For the most part, I agree with how the committee scored fibromyalgia. Plus, as Dr. Bennett said after the meeting, we have been able to educate the committee on what fibromyalgia is, and how it affects people.

Here’s how fibromyalgia was scored in a few of the criteria. A higher score means coverage is more likely:

• Impact on Health Life Years (0 to 10) = 4
• Impact on Suffering (0 to 5) = 3
• Effectiveness [of treatments] (0 to 5) = 1
• Need for Medical Services (0 to 1, 1 = services always required) = 0.8

The Bad News

The bottom line is that fibromyalgia is still not covered.

There are also one-and-a-half other things I disagree with.

Let’s start with the half of a thing — the Effectiveness scoring.

I believe that there are very effective treatments for fibromyalgia. I believe that you absolutely can get better. I think you can live a full and productive life, even with fibromyalgia.

So why do I say I only “half” disagree with this score? It’s because the committee must base it’s decisions on actual research. This is how they apply the rules fairly to all conditions and services.

Right now, the research only shows treatments to be 10-15% effective.

This places the Effectiveness score at 1.

In order to change this, more research needs to be done. Research needs to focus not only on the reduction of pain, but the other ways treatment benefits patients. There is so much more to fibromyalgia than just pain!

There also needs to be studies on combined treatments. I believe that treating fibromyalgia is more of a “shotgun” approach, rather than one magic bullet. Research needs to be done to provide the evidence that this is true.

I also think that we didn’t play the game right as patients and advocates. We went in telling stories about the people who are disabled and how horrible fibromyalgia is. This just underlines the committee’s belief that treatment is not effective. We should have told more stories about people who got proper treatment and felt better.

I also disagree with their assumption on the severity of fibromyalgia.

The committee seems to hold a basic assumption that most of the patients the doctors talked about were the “worst ones” — and that these are the patients who research is done on. The committee seemed to think that there were many more fibromyalgia patients who weren’t all that bad and didn’t require much treatment.

I think this is a huge mistake. It also doesn’t fit with what patients are telling us.

Over half of the patients surveyed by Dr. Bennett for the NFMCPA symptom survey^ saw four or more health care professionals in order to get a correct diagnosis. One third of those surveyed had to see more than five!

I think that the fibromyalgia patients who aren’t “all that bad” aren’t the ones trying doctor after doctor trying to figure out what is wrong with them. They may not even be all that worried about their mysterious aches and pains. They probably just think “this is part of getting older.”

Because it is so difficult to get a fibromyalgia diagnosis, I believe that those who are diagnosed do need treatment.

This would change the Need for Medical Services score.

The other good (and bad) news

The good news is that the VbBS reviews conditions every two years, so the battle isn’t over yet — it’s just postponed. We will be able to meet again with the VbBS again about getting things changed.

It’s also good news that the committee discussed having the Effectiveness score at 2. If they had gone this route, instead of scoring it at a 1, fibromyalgia would have ended up around line 475 — just above the line of funding. We are hopeful that when the VbBS reviews fibromyalgia again, we should have research to present that supports this score.

The bad news is that this does mean that if you’re on the Oregon Health Plan, you cannot get treatment for fibromyalgia today.