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Annie's nightmare: Needing treatment she can't afford

July 09, 1997

Ever had one of those scary dreams? A beast is approaching, a lion or gorilla perhaps, and your legs are like two hunks of stone stuck in cold molasses. The creature closes in, you struggle to escape and then...you wake up, sweating and breathing hard, giving thanks that it was only a dream.

Annie's nightmare was different, because it wasn't something she could leave with the pillow when she awoke. Annie's waking horror was an illness, made worse because the 40-something Hagerstown woman, a nurse who works for the State of Maryland, said she'd always been careful about her health.

"I've always been in excellent health. The only thing I've ever had was an injured knee. I hadn't missed a day (of work) in 10 years until I hurt my knee (in 1995)," she said.

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Things changed last October when she found a lump on her right breast. She saw a doctor, who sent her for a surgical consult and a mammogram. The surgeon ordered other tests and decided to do a modified radical mastectomy, which meant removal of the breast.

After surgery, she saw a specialist who said he wanted her to undergo "a few cycles of chemotherapy" and a bone-marrow transplant. Without the procedure, he said, there was a 75 percent chance the cancer would come back.

With such odds, what choice does a patient have? She agreed and underwent several doses of "chemo" in preparation.

And then, a week before she was due to begin the procedure at Johns Hopkins University Hospital, the hospital's finance department called to say her insurance company was rejecting the procedure as "investigational." Annie's cancer specialist told me that means the procedure they wanted to use doesn't have five years' worth of study evaluating the results. Unfortunately, he said, Annie doesn't have five years to wait and see how the research turns out.

The hospital asked for financial statements from her father's business and a promissory note to cover the $85,000 cost. Like any father concerned about his child's health, he began making calls, hired a lawyer and enlisted the help of local elected officials.

He also called the newspaper. I interviewed Annie, and asked her whether all that had happened had left her scared, or angry.

"I'm both of them," she said, adding that she'd been told that she'd have to undergo extra chemotherapy because of delays in the procedure.

Her voice breaking, she said, "This has been a physical and an emotional roller-coaster. When you think you're secure in your health, that's when the bottom drops out."

She was upset at the insurance company for balking at payment because she'd chosen them during the open-enrollment period state employees have to evaluate various plans. This summary of Maryland state employee benefits sent annually to each worker promised it would pay for routine exams, and for bone-marrow transplants specifically, she said.

(The fine print, unfortunately, says the book's chart is "a summary of generally available benefits and does not guarantee coverage.")

And so Annie's dad began pushing every button and pulling every lever he could reach, hoping that one would open the door to the treatment his daughter needed.

Tricia Hinchliffe, a top aide to Maryland state Sen. Don Munson, said that her office was working with the state insurance commissioner. Del. John Donoghue said he was trying to find a Johns Hopkins endowment fund of some sort that would pay for the treatment.

Then Annie's lawyer filed suit, Donoghue said, and nobody could talk to anybody about the case. Both sides prepared to take depositions, with the insurance company expected to argue that it denies payment for certain procedures because that's what the state had asked it to do to hold down costs.

But then, just when everyone was settling in for a long siege, Annie's dad called to say the insurance company had agreed to fund the procedure. It's happy ending (of sorts) for Annie, who can undergo treatment now. But what about all the other Annies, who don't have fathers who are prominent local businessmen with the smarts to involve everyone but the dogcatcher in the fight?

Some relief may be coming for them, in the form on SB 163, which passed in the 1997 General Assembly. It requires insurance carriers to develop procedures to evaluate certain "emerging" medical technologies.

And coming up for the 1998 session is HB 823, co-sponsored by Donoghue. A version passed the House in 1997, but didn't clear the conference committee by the deadline for the session's close. (Munson voted in favor of a companion bill in the Senate).

Both bills would require insurance companies to establish a health-care complaint and appeals process. It would also require the attorney general's Health Advocacy Unit to report annually to the General Assembly on complaints and how they were resolved.

It's like a chess game, really. The insurers change the way they do business and the regulators have to adapt.

And what does Annie think about all this? She can't say, because part of the deal with the insurance company was that she sign an agreement not to talk about any of this. I'm not bound by it, but I'll honor it anyway, at least until I have $85,000 I can give her if some insurance company official decides she's blown the deal.

Bob Maginnis is editorial page editor of The Herald-Mail newspapers.

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