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Fearing the Faceless: One Woman’s Fight to Fund Her Health Care

Fearing the Faceless: One Woman’s Fight to Fund Her Health Care

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Nicole Rosenleaf Ritter

Nicole Rosenleaf Ritter is a writer, editor and communications manager living in Bozeman, Mont. We attended Great Falls High School together and later The University of Montana. She wrote me about another Great Falls High graduate, Danni Cote Gilbert, who had been battling with her insurance company over coverage for her cancer treatment. I asked her to write a guest post about that battle.

Despite the Supreme Court’s decision to uphold the Affordable Care Act, many Americans remain suspicious -- even fearful -- about the law. North Carolina Republican Congresswoman Renee Elmers, a nurse, said at a Capitol Hill press conference that she had suffered sleepless nights due to terrible visions of life post-Obamacare:

“[I see] myself holding the hand of a patient while the doctor comes into the room and says that their lifesaving treatment will be denied because the independent payment advisory board deems it unnecessary,” she said, according to an NPR report on the ruling.

The idea of the “independent payment advisory board”-- a body created by the ACA with the power “to recommend proposals to limit Medicare spending growth” -- looms large in many an American psyche. Conflated with the mythical “death panels” of the fierce pre-ACA debate, the independent payment advisory board is seen as the ultimate insertion of government between patient and doctor, a nightmare world where faceless bureaucrats make life-or-death decisions based on money.

For my friend and high school classmate Danni Cote Gilbert, I would argue that the nightmare is already here.

Danni had just turned 37 when she started having shortness of breath on her regular runs near the home she shares with her husband and two young daughters in Mountain Home, Idaho, about 35 miles southwest of Boise. At first, she wasn’t overly concerned, but when the breathing difficulties continued, she made an appointment with her family doctor. She was diagnosed with seasonal allergies and given standard allergy medications.

Three months later, still struggling, she was referred to a pulmonologist, who ultimately ordered a CT scan. What the doctors found was a shock to everyone: masses in her lungs that, when biopsied, contained colon cancer cells. Danni had Stage IV metastatic colon cancer, and it had already spread not only to her lungs, but also to her liver.

That was September 2010. Since then, Danni has endured multiple rounds of chemotherapy and a course of radiation. She is insured. As a public school teacher, she has group coverage through Blue Cross of Idaho. And the premiums that she has paid for years have allowed her family to avoid financial ruin. She has continued to work, paid the out-of-pocket costs incurred and tried to live her life.

In June of this year, Danni found out that her latest chemotherapy regimen was no longer working. While Danni’s doctor was sharing that bad news, he also told her about a new development in the world of colon cancer research. Avastin -- a drug that helps cut off the blood supply to cancerous tumors -- had been shown to help patients live longer. It was already approved by the FDA to be used in combination with chemotherapy drugs as an initial treatment for colon cancer. It also was approved as a second-line treatment, meaning it could be used after the cancer had worsened. But, it was not approved for use in both stages of treatment. 

The new study in 820 patients showed that those taking Avastin lived only about one month longer on average than those undergoing chemotherapy without Avastin, but it appeared to confirm what doctors already knew. As Deena Beasley at Reuters wrote, “Genentech said some doctors were already using Avastin as a follow-up regimen for colon cancer patients who had relapsed, and it is talking with regulators about changing the drug's label to include the latest findings.”

Danni’s oncologist put her back on Avastin the next day.

When her case was reviewed at Blue Cross of Idaho, the fact that Avastin is not approved for both first- and second-line treatments became a problem. Its use in her case was viewed as experimental. The company denied the claim, leaving Danni and her family on the hook for the $3,383 per treatment, every two weeks. They dug deep and agreed to pay for it while appealing the decision, but Blue Cross then told the hospital that they would deny payment for all of Danni’s treatment if she went ahead with the Avastin.

That was when Danni wrote a post titled “How much is a month worth?” on her CaringBridge site:

“I'm sure that each and every one of you reading this would agree that more time with our children, spouses, parents, siblings, friends, relatives and loved ones is priceless, but in my case it is not.  There is a very real, and significant, price tag attached to these extra months that I so need (and deserve)…”

The next week, Blue Cross told Danni that they had never intended to deny the entire treatment, but Danni and her supporters feel strongly that the company -- which had its most profitable year ever in 2011 -- should cover Avastin as well. They have started a petition on Change.org to encourage Blue Cross to change its mind. As of the 4th of July, close to 100,000 people had signed.

At 39 years old, Danni is in the prime of her earning years and her children are just 5 and 7. The value of her life would seem well beyond $6,766 a month. For the actuaries at Blue Cross, however, the math is harder, the slope slipperier. If they approve Danni’s treatment, what other “experimental” treatments will they need to cover?

Stories like Danni’s are far from unique, because cost calculations are already a major factor in U.S. health care. Patients are already told that treatment that could prolong or even save their lives is too expensive.

The bottom line is that if you’ve got private insurance, you already have faceless bureaucrats between you and your doctor. They just don’t work for the government.

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