In the Feb. 6 edition of his Gamut column, LifeHealthPro chief editor Bill Coffin wrote about his friend Amy (not her real name) and how her successful battle with breast cancer was made easier by health care reform. Numerous readers responded to the article, and not always favorably. Rather than answer such responses himself, Bill thought that perhaps Amy could do a better job of it. This is what she had to say.
I’d like to thank Mr. Coffin for shedding some light on my story, the consumer’s story. Some responses have questioned my motives, and I’d like to address a few here.
My mother died of breast cancer in 1991, at age 40. She would not have died if she had been adequately screened. She was initially diagnosed with calcium deposits in her breasts at age 36; the belief at that time was she was just too young to have breast cancer. The delay was enough for the cancer to metastasize into her brain despite a bilateral radical mastectomy, radiation and chemotherapy.
My mother’s oncologist instructed my father to schedule prophylactic bilateral mastectomies for both my sister and me as soon as age 18. Strong evidence for a genetic component to breast cancer was just emerging in those years, and given that not only my mom, but both grandmothers and all immediate aunts had breast cancer at one time, that physician felt the only way to avoid the disease was to remove the breasts before the cancer appeared. A disfigurement or a death sentence at 17. Thus began my journey of vigilance.
My first mammogram was at age 25, per my PCP’s advice. This is about when the breasts stop developing, thus a baseline before that age is essentially useless. The opening salvo in a battle with your industry; I was too young, no need for mammography, no coverage. I fought this battle every year. I had the screenings annually, at my vigorous insistence, and occasionally at my own expense. I have stacks of correspondence with my provider, my physicians, and hospital administrators, who themselves in frustration some years simply provided the mammography and ultrasounds and biopsies free of charge rather than force me to skip them for economic reasons if not covered. I offer this as evidence that my avoidance of the genetic test for breast cancer is in no way indicative of a denial of reality or a lack of commitment to screening and prevention in general, nor my genetic predisposition specifically.
When the BRCA test for breast and ovarian cancer mutations was approved in 1994, I was undergoing treatment for polycystic ovarian syndrome (for which I was paying out of pocket because the recommended therapies are not covered by insurance). Numerous OBGYNs suggested I have the test. The familial history of breast cancer got them all amped up, too. You see, in the early years, Myriad as well as the medical community were actively recruiting patients with a high likelihood of testing positive in order to follow their cases for research. So I decided to do mine. I became the informed consumer so often touted.
Contemplating the genetic test, I had to consider a number of factors, including how the results would affect my future care and ensure the vigilance to which I had become proactively dedicated when I decided to keep my breasts for as long as they were healthy. Test negative and nullify the premise for my argument with the industry that the mammograms et al were medically necessary. Test positive and lose coverage, risk being unable to get new coverage because of my “pre-existing” genetic condition, get socked with exorbitant rates. I don’t have to tell you about the popular opinion of the insurance industry. We’ve all seen The Rainmaker. My research bore it out to a great extent. I discovered a number of cases where testing positive for a genetic anomaly created nightmare after nightmare for the patient. And if it wasn’t explicit, explained one investigator, the provider would simply find another reason to drop coverage. A clerical error, for example. A mistake on an application. A raise in rates to cause a lapse. So, since my provider would certainly cover me if I developed cancer without the test, there was no benefit, all risk. You must remember that the BRCA test is not “preemptive” as one commenter suggested. You may test negative and develop breast cancer, you may test positive and not develop breast cancer. I never stopped the physical screenings. I never took my eye off of the ball.
Then, after 13 long years of trying, GINA was signed into law in 2008: Patients testing positive for genetic mutations like BRC could not have their genetic status used against them. (Which means, to address one commenter, that YES, before that date, my genetic status could have been legally and explicitly used against me by insurers and by employers, regardless of disease status.) Barrier one overcome.
But would a positive test nonetheless trigger that other avenue? An “unrelated” reason to drop me? If I were dropped, would other providers see my status and find reasons to deny me? Would I get priced out of the market? What if I got breast cancer before finding new coverage? Could I afford to screen for and fight cancer myself? In order to be somewhat prepared for every possibility, I had to consider all that. And then, the Affordable Care Act. Barrier two overcome.
By this time, I was under the care of a breast health specialist. He was of the opinion that a prophylactic bilateral mastectomy as well as a hysterectomy were the way to go with or without the test, but that he’d feel better if I tested negative. I had fought to keep my breasts, and my ovaries, as I am as yet unmarried and childless. My sister, however, was newly married and getting nervous, having walked the same road. The test company, Myriad, offered a discount to full siblings if one tested positive (as long as they were not of Ashkenazi ancestry). Since I was better off financially, and there was no longer much of a practical downside thanks to new legislation, I went first. Out of pocket. For her.
That positive result was the key that opened the door to new and better screening, namely breast MRI. I had never heard of MRI for use in breast cancer screenings, and certainly not because I hadn’t been keeping abreast, if you’ll pardon the pun. Apparently cancer treatment is actually far more expensive than screening, so when one is “officially high risk,” you get the backstage pass. The spot on my second annual now-covered MRI, too small to be seen on mammography or ultrasound six months prior, was breast cancer. I had the bilateral mastectomy. I am now cancer free. No chemo, no radiation.
It’s a pretty straight line, actually: no new legislation, no test; no test, no MRI; no MRI, I don’t catch the cancer in time to stop it in its tracks. Saved my insurance company a ton of money, as well as my own life. And my sister tested negative.
That’s a win in my book.