Whatcom's Beloved Healthcare Myth

Robert A. Duke is author of "Waking Up Dying: Caregiving When There Is No Tomorrow," he lives in Bellingham. His email: boshduke@gmail.com

The name itself, Statewide Health Insurance Benefits Advisor (SHIBA), sounds like a godsend to the sick and dying and their caregivers desperate to understand their health insurance.

For Whatcom County caregivers, patients and health insurance beneficiaries, SHIBA symbolizes hope for getting care and treatment information and advice about the complexities of health insurance during times of sickness, dying and the threat of medical financial ruin. This was also my image of SHIBA, but unfortunately I have to tell you this common notion about that SHIBA's role in providing health insurance advice is a myth.

I first encountered the SHIBA myth in August 2009 when my wife, Shearlean, was diagnosed with terminal brain cancer. I searched Whatcom County for some form of social, medical, healthcare or insurance assistance for two weeks following Shearlean's diagnosis, but found nothing we were eligible for until I stumbled upon our local SHIBA office in downtown Bellingham. The office, then as now, was staffed with trained and knowledgeable people eager to provide health insurance benefits advice.

I wager nobody wanted more than I for SHIBA to be what its name implied: Statewide. Health. Insurance. Benefits. Advisor!

As a college professor, my wife was a state employee covered by state health insurance. We needed to know the extent of her health insurance benefits and how the insurance worked to get the care and treatment she required. Her condition was so desperate that we were forced to plow ahead with treatment regardless.

Western Washington University, her employer, was responsible for administering her health insurance benefits but, as I quickly learned, knew little. Her insurance flowed through the state's Health Care Authority (HCA), Uniform Medical Plan (UMP) or Public Employee Benefit Board (PEBB). Outside of UMP, whose name appeared on her health insurance card, we had never heard of HCA or PEBB, or others such as ODS (now Moda Health), Washington State Rx Services or MedImpact, which we eventually had to deal with.

When I first visited SHIBA in 2009, I found its staff knew nothing more about the alphabet soup of state health insurance organizations than I did. I knew only that our insurer was Uniform Medical Plan (and even that later proved wrong according to ODS information). My questions were the widest and wildest: What does brain surgery cost? Is it negotiable? Are there brain surgery or cancer options we can elect or cancel? Who can I ask for information? Whose job is it to answer my questions? My ultimate question in any category of care or treatment was: What do I do? The staff did know about Medicare, but my wife was too young for it. The patient and sympathetic SHIBA representative could offer no advice or referral. I was disappointed but not discouraged. Until my wife's death in February 2011, I repeatedly returned to SHIBA seeking help in obtaining care for her. I thought if I asked new questions or asked old questions differently, I would finally get answers. That never happened.

After 18 months of caring for my wife, by dealing with the state health insurance system and endlessly questioning Whatcom healthcare providers, I had assembled my own knowledge of the system. In so doing I was horrified to discover that I had acquired greater expertise about HCA, UMP and PEBB than SHIBA or any Whatcom provider.

But my patient, my wife, had died of her disease, and suddenly all of my hard-won information was no longer relevant.

Desperate to use what I had learned, I got involved with the Whatcom Alliance for Health Advancement (WAHA) with the intention of contributing to the push for healthcare reform in Whatcom County. This put me back in touch with SHIBA, and I tried to interest it in the knowledge I had accumulated about the state's employee health insurance. But SHIBA's Medicare mandate made that impossible. During one of my proselytizing missions, though, I heard about an occasional SHIBA visiting advisor who was reputed to know something about state employee health insurance.

Ever hopeful, and though my wife was gone, I made an appointment and we met. Though we talked pleasantly for a half an hour, I learned nothing from her while she scribbled notes as I talked about Washington's HCA and PEBB. This advisor turned out to be another dead end in a long string of dead ends when it came to learning about Washington's own health insurance for state employees.

With so much hard won knowledge and experience on the verge of being wasted, and other motivations, I decided to document what I learned by writing a book. I titled it Waking Up Dying to answer my not-so-hypothetical question: What do you do if one day you wake up dying on the doorstep of Whatcom County's healthcare system, blessed with undefined health insurance benefits that neither you nor anyone else know how to use?

Over the 20 months it took to write and publish a 318-page book I continued trying to unravel the organization and function of HCA to at last understand how its services should be used to obtain care and treatment for a terminally ill state employee. Calls to HCA and the office of the Washington State Office of the Insurance Commissioner, Mike Kreidler, always resulted in referrals back to my local SHIBA office. By late 2013 I had been wandering around the healthcare maze for four years and still hadn't found my way through it. To vent my frustration and disseminate the information and experience I had accumulated, I decided to also blog about my experience. For the blog, robertaduke.com, I commissioned a cartoon to illustrate my vision of being a caregiver and patient in the Whatcom County and Washington State healthcare systems. It depicted a bewildered hospital-gowned patient pushing an IV stand pausing at the entrance to an endless maze illustrating the healthcare system.

Today, as the fifth anniversary of my wife's cancer diagnosis approaches our healthcare maze is still as impenetrable (maybe more so) than when I started. Unfortunately it has grown more complex with the addition of the Affordable Care Act (ACA) and national Palliative Care Initiative, which have added two additional layers to the already multi-layered American healthcare system. When caring for my wife I once cataloged 32 layers of healthcare providers (doctors, nurses, social workers, records clerks, dieticians, laboratory, imaging) I might have had to penetrate to reach a practitioner or obtain a procedure she needed. Now, to my way of thinking, there were 34 layers.

And the SHIBA myth is stronger than ever. On Tuesday, June 10 the audience at PeaceHealth's Adult Day Health Center's Caregiver Support Group conference I attended mentioned SHIBA as a source for health insurance information. I knew it wasn't so, but SHIBA's promising title had more endurance than my outcry that it wasn't so. And to my chagrin, I discovered I was not yet immune.

SHIBA-- State Health Insurance Benefits Advisor -- I found the idea of it still tempting. Why not a health insurance advisor, I asked myself? It seems like such a good idea to provide advice about state health insurance (in general) and benefits (in particular) for the public at large, but especially for the 230,302 active PEBB members such as my wife was. *

I recently talked with Maureen Kane, the current director of the Bellingham SHIBA office, and she confirmed that Medicare information is indeed the focus of SHIBA's benefits advice. Although understandably somewhat defensive about her organization, she acknowledged in so many words that SHIBA's name does promise a lot more than it delivers.

SHIBA in Whatcom County is sponsored by the Whatcom Alliance for Health Advancement (WAHA) with which it shares facilities. On WAHA's Web site SHIBA's relatively new posting now makes it clear about SHIBA's Medicare orientation with a page titled SHIBA/Medicare and explanatory text mentioning Medicare in each paragraph.

I also spoke with Todd Dixon, SHIBA Program Manager, in the Washington State Office of the Insurance Commissioner, appointed Oct. 16, 2013. He thoroughly reiterated SHIBA's mission and charter. He emphasized that SHIBA is a volunteer-staffed organization that serves 56,000 persons annually. When I asked whether it didn't all boil down to providing consumer information about health insurance, he in so many words agreed. As a counterpoint, I asked, "I am not going to get care and treatment benefits explained to me by calling SHIBA, am I?"

Without getting into any discussion with Dixon, I pointed out that SHIBA's name promised a lot and this was reinforced by the About SHIBA services page on Washington's www.insurance.wa.gov Web site, which, in a bulleted list, states SHIBA can help you:

• Understand your health care coverage options and rights

• Find affordable health care coverage

• Evaluate and compare health insurance plans

"That's promising a lot more than consumer information about Medicare," I said, not expecting or getting a reply.

So what information had I wished Washington had provided for my wife when I was her caregiver? Information about the components and functions of Washington State Rx Services then managed by ODS under Uniform Medical Plan (UMP) would have been of great help. In February 2013, two years after my wife's death, while fact-checking my book, I uncovered a simple organization chart, which clearly showed the existence and relationship of MedImpact to UMP a key component in PEBB.

ODS was a health plans sales company that sold a prescription benefits plan to Washington State. When Washington bought the plan, it hired ODS to manage the plan. Since ODS was a sales organization and not a benefits management company it hired MedImpact, whose business it was to manage prescription services.

Medimpact decided when to refill prescriptions and for what quantity. For example, though Shearlean's doctor prescribed 42 doses of Temodar cancer drug, MedImpact approved only 30 doses, which was insufficient to complete initial treatment and in full contradiction to published medical protocol for glioblastoma tumor treatment. In fact, MedImpact decided whether a prescription would get filled in the first place even if a life were at risk -- and MedImpact answered only to ODS.

Asked about MedImpacts relationship to MODA/ODS, Jonathan Nicholas, VP of Marketing for Modahealth, replied in an email, "We have a contract with MedImpact to provide certain services in certain markets. That's about as direct as it can get."

I bet you thought your doctor decided about your prescription!

No, that's another myth.

Aside from requiring every health insurer to write a user's manual for patients, what do I recommend, after five years of trying, that you do to make the best use of your healthcare benefits? Demand! And I mean DEMAND that your doctor or nurse fully explain exactly how a practice, procedure, treatment or care will begin, proceed and terminate before you agree to it.

At all times your greatest power as a patient or caregiver is to say, "No!"