Sneaky and harsh proposals are playing with our lives

In 2012, my older son, then 20, was diagnosed with a rare form of cancer, a pituitary germinoma. The second thing the doctor told us was: “You’re lucky; the numbers are with you.” He was referring, of course, to my son’s odds of survival — after chemotherapy and brain radiation and assuming a lifelong supplementation of the pituitary functions wiped out by the disease.

I remember the early years of my son’s treatment as a dark tunnel through which he, his brother, his father and I had to travel. Studies suggest the importance of positive imaging for patients and their families. Intuitively, I imagined the “good numbers,” gleaned from the internet and from (sometimes reluctant) doctors, as numerals in colored light against the blackness of the tunnel walls. Like the figures from a projection alarm clock on the ceiling of a darkened room, the numbers were always there if I turned my head: 80 percent, 85 percent — as high as 95 percent in some of the very few studies of this rare disease.

One number, the proverbial light at the end of the tunnel, I could not at first even dare to imagine. Always beyond the limits of my vision was the number “5,” that magic digit representing for most cancer survivors the years that have to pass before they enter, statistically speaking, the general population — before they are “cured.” Around his birthday this fall, if all goes well, my son will achieve that number.

But now there are other numbers to be faced as a family. Each year of my son’s survival, each month and day of his long recovery, brings him closer to being 26, the age at which people can no longer be covered under their parents’ insurance. His sickness and treatment delayed his college graduation; he is just now entering the job market, three years later than his peers. He has no idea whether, as a person with pre-existing condition, he will be eligible for any form of insurance or how much he will have to pay for it. The Senate version of the health care bill, as the Los Angles Times noted a few days ago, is no kinder to the sick and recovering than the House version, although it is sneakier about its harshness. Although the bill claims to cover people with pre-existing conditions, states can easily — indeed almost automatically — get waivers that will allow them to force such peoples into much more expensive plans with very limited coverage.

The numbers I have seen for the cost of high-risk pools are staggering: For cancer survivors, insurance might cost individual subscribers close to $50,000 a year. We do not know what my son’s medicines — currently $40,000 a year without insurance — would cost under a new and harsher dispensation.

We face a world of numbers so big, so confusing and so contradictory that they boggle the mind. One thing we do know: Almost no individual, no family, can afford the cost of cancer treatment or post-cancer care. Even with our professional jobs, even with what we have been able to save, my husband and I cannot help pay these premiums for very long. The versions of the American Health Care Act, as they stand now in both chambers of Congress, would bankrupt the family in a few years.

I am well aware that we are, relatively speaking, the lucky ones. We have money that might last until 2018, when there’s a chance for new majorities in Congress. My son has an excellent college degree and impressive numerical and verbal skills that might, even without employer mandates, land him a job with insurance. Of course, he cannot afford to take a nonprofit job, to finish the novel he has been writing or even go to graduate school. He will almost certainly have to leave Texas. In two months he will have to open his laptop, take a deep breath and see what is left of the promise that was Obamacare.

Ross became ill at a moment in his life and in the life of the country in which many people — by no means enough — could afford not to think about the kind of numbers we are debating today. In my own tunnel — my own tunnel vision — there were no dollar signs on the walls. Today, Congress is playing with numbers, trading health care for a tax cut.

This is another way of saying it is playing with lives. And the numbers do not add up — not for Ross and not for the millions like him.