On October 10th, the Value-based Benefits Subcommittee met to consider adding fibromyalgia to the list of conditions covered by the Oregon Health Plan (Medicaid).
The subcommittee began by reviewing the decision made in 2008 to not cover fibromyalgia. At that time, the committee’s position (as I understand it) was:
- The most effective treatments for fibromyalgia are exercise and anti-depressants.
- Exercise isn’t a covered treatment for any condition.
- If a fibromyalgia patient is depressed, then the anti-depressants would be covered under a diagnosis of Depression.
- No other treatments showed enough evidence as being effective.
The committee acknowledged that there have been many more studies done in the last five years, since their last review, but still recommended keeping fibromyalgia at line 634, with “Disorders of Soft Tissue”, and below the line of funding.
Several fibromyalgia experts gave testimony
Jan Chambers, President/Founder of the National Fibromyalgia & Chronic Pain Association; Dr. Robert Bennett, Oregon Health Sciences University; Dr. Kim Jones, OHSU; and Dr. Ginevra Liptan, Legacy Good Samaritan Primary Care Clinic; all gave expert testimony for the hearing.
Dr. Bennett explained to the subcommittee that fibromyalgia is a complicated medical condition. It is much more than just a “disorder of soft tissue.” There are actual changes that happen in the brain and neurological system of a fibromyalgia patient. He told the subcommittee that there are many things that can treat fibromyalgia — and that the best approach is one that uses a variety of treatments.
Dr. Bennett also provided some interesting statistics:
- In some studies, it’s estimated that fibromyalgia is the third most common chronic pain condition, behind back pain (#1) and Osteoarthritis (#2).
- In US studies, there is a three times greater risk of suicide if you have fibromyalgia. Some studies in other countries show a seven times or even 10 times greater risk.
Dr. Jones elaborated on the 256 studies done regarding fibromyalgia
Only about 50 of the 256 fibromyalgia studies were done prior to 2008, when the committee last reviewed fibromyalgia for coverage. Dr. Jones stressed the need to take more time to review the 200+ new studies and their findings, since some of these findings contradict what the subcommittee had in their notes. Primarily, the use of Lyrica (pregabalin) in the treatment of fibromyalgia; the importance of using SNRIs instead of SSRIs (the norepinephrine reuptake is important and provides more benefit than serotonin alone); the effectiveness of trigger point injections; and the need for a multi-disciplinary approach to treatment, which would include physical and/or occupational therapy.
Dr. Jones also quoted a study showing that a typical 40 year old fibromyalgia patient has the physical capabilities and balance of an 80 year old. (Those of you who are fibro patients are probably nodding right now. You feel like you’re 80 years old, right?) This requires the intervention of physical and/or occupational therapists to help the patient know how to move in a way that helps, instead of hurts.
Dr. Liptan spoke as a primary care physician, fibromyalgia expert, and as a fibromyalgia patient
As a primary care physician, Dr. Liptan expressed her frustration at not being able to prescribe the things that she knows will help her patients. She talked about the great resources to help fibromyalgia patients, like OHSU’s fibromyalgia clinic, that her Medicaid patients cannot take part in because fibromyalgia is not covered.
As a patient, Dr. Liptan also explained that with proper treatment, fibromyalgia patients can go on to live productive lives, enter the work force again, and function almost normally. Without treatment, this may not be possible.
Hearing from the public (patients)
When it was time for public testimony, I was able to speak along with a support group member.
The three of us focused on giving the patient’s perspective. We talked about how difficult it is to get a diagnosis in the first place.
A 2010 study showed that most fibromyalgia patients see three doctors before they get a diagnosis. A full quarter of patients see seven or more doctors! When you finally get a diagnosis, you are relieved. “Finally! I know what’s wrong with me and someone can help me!”
For Medicaid patients, the next thing that happens is that they find out their insurance won’t cover their condition. All that relief turns into horror. You know what’s wrong, people can help you, but you can’t get treatment.
We pleaded with the committee members to sit down with the experts who presented today and go over the 256 studies. We asked them to step back and take a good look at all the data, not just the bits they had in front of them.
In the end, we feel we have won a victory
The subcommittee voted to do what we asked. They will be looking at the materials again with fresh eyes. It was shocking to learn that if they do move fibromyalgia above the line, then something else must fall below the line. <sigh> It is a never ending battle, this business of being sick.
The meeting ended with the subcommittee committing to further review the data that was presented today. They intimated that if they did move fibromyalgia above the line that it would likely be for specific treatments that are already approved for fibromyalgia such as pregabalin or trigger point injections. They further committed to keeping the doctors who presented and the fibromyalgia community apprised of their decision.
It is really the best outcome we could have expected out of today. It was highly unlikely they were going to approve it on the spot.
To keep up-to-date on the activities of this committee, you can sign up to receive the announcements that HERC sends out. Here’s the link: https://public.govdelivery.com/accounts/ORDHS/subscriber/new?topic_id=ORDHS_378.
Curious about my testimony?
I prepared a statement before I went to the hearing. I ended up deviating a bit based on what Jan, Dr. Bennett, Dr. Jones, and Dr. Liptan presented, but this will give you an idea.
One key thing I added to my statement was in response to one committee member’s question regarding testing for fibromyalgia. I pointed out that there are two blood tests that have been discovered for fibromyalgia, one of which is accepted by the Social Security Administration.
Hi, I’m Tami Stackelhouse, Fibromyalgia Health Coach and co-founder of the Fibromyalgia-ME/CFS Support Center, Inc., a local non-profit support community.
Through one-on-one coaching, support meetings, webinars, Facebook, and other social media channels, I provide support to nearly 1,000 fibromyalgia patients through my coaching business and another 700 in our support community.
A 2010 study showed that most fibromyalgia patients see 3 or more doctors before getting a diagnosis. A full quarter see at least 7 doctors! I was no different.
After I received my diagnosis, I drove home crying. After 4 doctors and more than 5 years, I had finally found someone who knew what was wrong with me and could help me get better.
Because I was able to get the treatments I needed — I can now live like I don’t have fibromyalgia.
Did one treatment provide 100% healing? Definitely not. But you can still get to 100% with 50 things that give you a 2% improvement. That’s what I did.
The abstract for the 2012 Canadian Guidelines for the Diagnosis and Management of Fibromyalgia Syndrome reads:
“The diagnosis of FM is clinical, not one of exclusion, not needing specialist confirmation, and requires only limited laboratory testing.”
The Conclusion of the study goes on to say:
“…Although there is currently no cure for FM, many patients achieve moderate symptom control and are able to lead active and fulfilling lives.”
When you are diagnosed with a chronic illness, it is scary. You have lots of questions. How will my life be different? What can I do to get better? Is there even a cure?
Can you imagine not being able to see a doctor to find out the answers to those questions?
No matter what you feel about treatments or medications, surely you can agree that Medicaid patients with fibromyalgia should be able to see a doctor. They deserve to be able to have these questions answered. They should have an opportunity to find out what their options are.
Please, move fibromyalgia above the line. Thank you.