Will Outlier Oregon Move Fibromyalgia ‘Above the Line’?

This press release was just sent out from the Oregon Healthwire. You can see more on this issue at the following two blog posts:

Will Outlier Oregon Move Fibromyalgia ‘Above the Line’?

Oregon, as the only state in the U.S. that excludes Medicaid coverage of fibromyalgia, will have doctors, researchers, patients and advocates asking the Oregon Health Authority (OHA) to cover fibromyalgia diagnosis and treatments, in light of ongoing research and new ICD coding.


(Portland, Ore.) — A national petition having gone viral garnering more than 600 signatures (http://chn.ge/1aua7js), highlights a concerted effort by clinicians, patients and advocates who are asking a subcommittee of the OHA’s Health Evidence Review Commission to allow Oregon Medicaid to cover diagnosis and treatments for fibromyalgia. Oregon is the only U.S. state that excludes Medicaid coverage of fibromyalgia.

Tami & Tamara at 2013 Women's ExpoIn the past several months, many Oregonians with fibromyalgia, physicians, counselors, medical providers and advocates have been asking the state of Oregon to reconsider such coverage. In October, advocates and providers, along with the National Fibromyalgia & Chronic Pain Association, appealed to the Oregon Value-based Benefits Subcommittee (of the Health Evidence Review Commission, or HERC) to begin covering fibromyalgia for Oregon’s Medicaid enrollees. Currently, fibromyalgia is currently “below the line” of covered conditions, meaning it must be prioritized to gain coverage.

Tami Stackelhouse (on left), 42, is not only a fibromyalgia patient, she also coaches those living with fibromyalgia and co-founded a support center. She lives in Tigard, Oregon.

“I was diagnosed when I was 35, and was fortunate enough to immediately get effective treatment. I have no doubt that this is why I am able to live mostly as if I don’t have fibromyalgia. As a fibromyalgia coach, if I can connect someone who is newly diagnosed with the correct treatments and providers, they can usually get better. Most of my clients are working full time. When a patient comes to me who has had fibromyalgia for years, and who hasn’t had treatment, it is much harder to get them to a place where they can work again. Early and appropriate treatment is the key between becoming disabled or continuing to live a productive life with fibromyalgia,” said Stackelhouse.

Tamara Staples (in center) is a 50-year-old fibromyalgia patient, advocate and support group leader living in Newberg. She shared that although she has commercial health coverage, many of the support group members are on Medicaid. “It is heartbreaking for them to have this diagnosable illness with bonafide treatments that they don’t have access to because of their insurance status. This is a segment of society that can least afford to pay out of pocket. It has been proven with this illness that if diagnosed early and treated aggressively, patients have a much better chance of continuing to work and to be productive members of society. Otherwise, most patients are faced with disability.”

It is believed that fibromyalgia affects as many as 117,000 Oregonians, or 3% of the state’s population. Researchers and providers have also shared with state policymakers that fibromyalgia is a studied and treatable disease, with successful therapies that include medications, exercise, cognitive therapy and education, Medicaid coverage will mean earlier diagnosis, better symptom management, fewer people on disability payments, and financial savings of health care resources.

Kim Jones, Ph.D., a clinician and researcher from Oregon Health & Science University, is a national voice and expert on the condition. She studies and sees patients with fibromyalgia. Dr. Jones said, “Not treating or under-treatment drives up utilization and costs. Moreover, treating individual fibromyalgia symptoms under different diagnostic codes in a piecemeal fashion does not result in best outcomes for management of the overall serious and debilitating nature of this condition. Effective comprehensive treatment for fibromyalgia actually saves lives, as people with untreated fibromyalgia are more likely to commit suicide or develop diabetes.” She notes that research findings over the past 15 years have provided conclusive evidence that fibromyalgia symptoms are real and emanate from subtle changes in the working of the body’s normal pain system.

Recent studies by other researchers show fibromyalgia is a chronic disorder with evidence-based guidelines, and patients suffer at the same or greater magnitude versus other musculoskeletal and/or debilitating conditions. Early diagnosis and effective treatment of fibromyalgia saves money; improves functionality and productivity; reduces personal suffering, the impact on families and communities, and long-term disability.

Also important to this effort is that in October, 2014, new ICD-10 codes* will be issued, and for the first time, fibromyalgia will have a dedicated diagnostic code. Oregon providers can use this new code to better diagnose and treat fibromyalgia patients, and allows for reimbursement. Also, the new Social Security Administration Ruling qualifies fibromyalgia as a medical disability (as of July, 2012).

Clinicians, researchers and patients on Thursday, January 9, 2014, will HERC’s Value-based Benefits Subcommittee (VbBS) to cover treatments for Oregon’s fibromyalgia patients who are enrolled in Medicaid. The subcommittee will continue hearing evidence and testimony asking them to move fibromyalgia onto the Prioritized List of the 498 conditions covered by Oregon Medicaid reimbursement (fibromyalgia is currently listed at line 634, lumped in with other nerve disease or ‘myalgias’). Fibromyalgia is medically defined as a “a common and complex chronic pain disorder that causes widespread pain and tenderness to the touch that may occur body-wide or migrate over the body.”

Fibromyalgia, up until recently, has not been well understood by patients, physicians and the community. The NFMCPA defines the most prevalent symptoms as comprising widespread pain, fatigue, sleep disturbances (sleep apnea and/or waking up unrefreshed), cognitive difficulties (memory problems or thinking clearly), and stiffness. The NFMCPA notes that additional common symptoms may include depression or anxiety, migraines, tension headaches, pelvic pain, irritable or overactive bladder, irritable bowel syndrome, temporomandibular joint disorder, tinnitus, and gastrointestinal reflux disease. Stress often worsens the related problems and symptoms.

Interested individuals can sign the online petition, write or call to VbBS subcommittee members, or attend the VbBS subcommittee meeting:

* Says Jan Favero Chambers, the founder and president of the National Fibromyalgia & Chronic Pain Association (NFMCPA [http://www.fmcpaware.org/science-of-fm.html]. “Health insurance coverage for Oregon Medicaid patients will mean earlier diagnosis, better symptom management, fewer people on disability payments, and financial savings of health care resources.” Two national developments have occurred that help these efforts. The first is the July, 2012 ruling by the Social Security Administration that qualified fibromyalgia as a medical disability. Second, in October, 2014 new ICD-10 codes will be issued, and for the first time, fibromyalgia has been given its own unique code. The International Classification of Diseases coding is the official system of assigning codes for diagnoses and procedures associated with hospital utilization and medical reimbursement in the United States.

Photo by Terri McKee. All rights reserved. Used by permission.
Tami Stackelhouse



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