As a running coach, Roger Morse is a big believer in setting one’s own pace, not overdoing it and, above all, enjoying every step of every training session.
Which might help explain why, as a patient with a relatively rare neuro-muscular disease called myasthenia gravis, or MG, Morse is getting a little tired of running repeatedly into a brick wall.
We’re talking about health insurance here. Or, in Morse’s case, his inability to pursue a promising treatment option because, in his humble opinion, too many of the faraway doctors who keep stamping “denied” on his requests for insurance coverage haven’t a clue what they’re talking about.
Sitting at his dining room table in Westbrook on Friday afternoon, Morse offered his 2 cents on physicians, many of them retired, who make good money reviewing insurance requests from patients like him.
“You take a guy who’s been retired for years, is probably not keeping up with the medical practice,” he said. “Then you take a disease like MG, where there are so many things coming down the pipeline. If they’re not continually getting re-educated, they can’t make a good decision.”
Morse’s conclusion: “These retired doctors who are being paid to review these cases – they’re not being paid to approve them. They’re being paid to reject them.”
A little history:
Morse, a lifelong resident of Westbrook who for more than four decades has owned and operated his family’s Joseph O. Winship & Co. Insurance agency just a few blocks from his home, decided about 10 years ago that he was getting too paunchy for a man his age.
So, he resolved to do something about it. And he knew, having coached local youth soccer and high school hockey for years, that the more help he got, the better.
Off he went to Maine Running Company, now Fleet Feet Sports Maine Running, in Portland, where he signed up for a running group and didn’t look back.
Speed was not his goal – if he ran a 5k in 30 minutes, that was plenty good enough for him. What mattered, in addition to improving his health, was having fun along the way.
It worked. His weight dropped, his outlook on life improved and his infectious enthusiasm soon earned him a gig as a running coach for Fleet Feet, which he continues to this day. He does it not for the money, but for the love of helping others achieve their own often-modest goals.
“And for the free shoes,” Morse said with a chuckle.
Six years ago, after struggling through a half-marathon at Disneyland in California, Morse suddenly began experiencing double and blurred vision and extreme muscle weakness. The eventual verdict: myasthenia gravis.
Somewhere between 70,000 and 100,000 Americans have been diagnosed with the disease, which knocks out the receptors that convert nerve impulses into muscle responses.
The bad news is that there is no cure. The good news is that the mortality rate has dropped over the decades from between 30 and 40 percent of all patients to just 3 or 4 percent today.
Living with it, however, is often easier said than done. One day Morse might be out mowing his meticulously kept lawn; the next, he’s flat on his back on the couch, unable to even get up.
This may come as news to many who have known him for years.
“I’m the type of person who doesn’t live it on the outside,” he explained. “A lot of friends still don’t know how bad it is.”
But it’s pretty bad. Back in May, Morse actually managed to complete a Mother’s Day 5k, albeit in a run-walking 43 minutes. Then the other shoe dropped.
“I was wasted for two weeks,” he recalled. “Just gone.”
Treatments have ranged from surgery to remove his thymus gland, which can exacerbate MG in some cases, to long-term use of immunosuppressants like prednisone, which has brought back all the weight he lost.
Then there’s rituximab. Commonly used to treat various cancers, it has in the past few years shown promising results for certain people with MG. So much so that three months ago, Morse’s neurologist strongly recommended that he try it.
Morse and his wife, Carol, have health coverage with Anthem through her job as a registered nurse at Maine Medical Center.
Twice since May, the insurance company has denied his request for rituximab – an admittedly expensive drug that can run over $10,000 per infusion – on the grounds that it is “not medically necessary.”
Says who?
“Anthem Blue Cross and Blue Shield strives to provide consumers with access to safe and effective medical care that provides quality health outcomes,” said company spokeswoman Stephanie Dubois in an email. “As part of that effort, Anthem has a broad team of doctors, nurses and other health professionals who evaluate the benefits of health care treatment options and make recommendations for coverage.”
When those decisions are appealed, Dubois continued, “we conduct a second level of review, which is done by a licensed, board-certified physician who is a specialist in the same clinical area as the treatment. This physician may be an independent doctor.”
Morse, who knows his way around Google, has his doubts – if not about the reviewers’ resumes, then with the notion that in the ever-changing world of health care, they’re all on top of their game.
A few years back, while getting his ducks in a row for his thymus surgery, Morse’s request for an overnight hospital stay was denied.
That decision was later overturned at his doctor’s insistence. But in the interim, Morse detected the evaluator’s name on the rejection form and did some digging.
“He was a 74-year-old pediatrician,” he said. “He’d been retired for 25 years.”
More recently, Morse got out his laptop upon receiving his second denial for rituximab. At least it was a neurologist this time.
But this guy too is in his 70s. He too has been retired for years. And lo and behold, back when he was practicing near San Diego, his patients rated him a collective 1.5 on a scale of 1 to 4.
“You’ve put your finger on the problem,” said Nancy Law, chief executive of the Myasthenia Gravis Foundation of America, in a telephone interview. “That is exactly what we see – the people who are reviewing these physician requests many times have nothing to do with myasthenia gravis. They don’t even know enough about the disease to realize what they’re saying.”
Saturday morning, Morse headed out to Cape Elizabeth to coach a group of runners through their dress rehearsal for next weekend’s Beach to Beacon 10k. He’s run the race six times himself, but his MG lately has reduced him to cheering them along and keeping them hydrated from his son’s pickup.
Then on Monday, it will be back to that brick wall with yet another appeal for the treatment that could well put him back on track.
Don’t even suggest that he give up. A good coach never does that.
“You’ve got to look at the bright side,” Morse said. “If you look at the bad side, it’s going to eat you up.”
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