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One of my two daughters was born with a complex, highly variable genetic disorder capable of affecting virtually every organ system and associated with a high risk of cancer. Now approaching 40, she was diagnosed in infancy but fortunately escaped the dreaded childhood manifestations: severe cognitive impairment, skeletal deformities, malignant tumors of the eye and central nervous system. She was the dearest, sweetest little girl, bright as a button. Problems, including depression, issues with planning/organizing/multi-tasking, and mild cosmetic disfigurement, began with the onset of puberty. She required her first surgery, to remove a large tumor in her thigh that made it painful to sit, as a junior in college. Long story short, she would have gone blind in both eyes at 26 and died a quadriplegic at 28 and again at 32 without expert surgical intervention. Along the way she sensibly decided she would never have children.

Two years ago during Breast Cancer Awareness Month, after getting the run-around from an inexperienced doctor who didn't think the tender lump in her breast could be malignant, my daughter began the triple whammy of mastectomy, chemotherapy, and radiation for early breast cancer, boosting her odds of surviving five years to about 95%. Recently she has developed osteoporosis. (Her underlying disease predisposes her to both early-onset breast cancer and early-onset osteoporosis, which isn't common knowledge in the medical profession.) The University-affiliated physicians currently treating her or supervising her care include specialists in family medicine, medical oncology, radiation oncology, surgical oncology, plastic surgery, neurosurgery, and medical genetics.

So here's where the ACA comes in (or doesn't). My daughter is a college graduate, but her employment history doesn't reflect this, and needless to say, there are gaps in it. At the urging of her highly talented sister she quit her first Big Box retail job to find something better through temp work, which didn't pan out. Then, just as her out-of-state individual health insurance plan expired (which she could have renewed once, for six months, but hadn't gotten around to), she lost a full-time job she was about to be hired for, due to emergency eye surgery followed by a week of facing the floor without raising her head (her face was so swollen, we had to ice her lips so she could drink through a straw). It was around this time that her father and I, having advised against quitting her Big Box job with its health benefits until she found another position, and having covered the out-of-pocket for her eye surgery, helped her find an in-state individual health plan. (Of course anything to do with her eyes was excluded for three years as a pre-existing condition, but the unsuspected spinal tumor at the top of her neck was covered.) She had exhausted all her reserves during her prolonged job search, so we offered to pay the premiums. To her credit she hates being dependent, and it's terrible for her self-esteem, but we insisted on grounds that in a sane society, health insurance premiums wouldn't be an issue.

My daughter has been on this individual plan ever since, partly because if she lets it go, she'll never get it back. (In our state they can't dump her or charge her a higher rate for getting sick, but they can reject her application.) When her breast cancer was discovered, she had been working in a Big Box warehouse for six years continuously, declining their inferior, high-out-of-pocket-if-you-get-sick health plan, with no compensation. Said Big Box went into bankruptcy around the time she was diagnosed, but fortunately she was still eligible for long-term disability from them, after Social Security turned her down; however once said Big Box was sold to the highest bidder, its purchaser promptly fired all employees who were out on long-term disability. When she was able to return to work, it took months to find another job.

This is a better job (heating! air conditioning! no repetitive arm-raising! possible to sit! okay to wear pockets!) albeit not better-paying, at a new company that seems to care about its employees. Already they've promoted her. But again with our blessing she has rejected their medical coverage (she accepts vision and dental) because although it's fairly generous, it would require her to switch to an entirely different, less excellent system and change every single doctor. And then what if her new employer goes out of business, or she loses her job for some reason? She won't be able to reactivate her individual plan.

Under the ACA, my daughter would have to go without coverage for six months before she could qualify for a high risk exchange, with probably fewer benefits and a higher out-of-pocket than her current plan. Again, she gets nothing -- zero -- in return for saving her employer the cost of coverage. And just this month, her individual monthly premiums went up from $385 to $427. Without family assistance, she would be forced to accept her employer's plan, given her meager income.

The ACA offers premium subsidies for low-income people, but only if their employer doesn't offer ACA-approved coverage. So assuming the ACA goes into effect as scheduled, her only relief is to accept her employer's plan and change all her doctors, her cancer care center, her hospital etc.

Health coverage should have nothing to do with where a person works. We need single payer!

Originally posted to pianogramma on Wed Oct 03, 2012 at 09:15 AM PDT.

Also republished by Single Payer California and Community Spotlight.

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