Will My Children Ever Be Able Afford Health Insurance? I'm Worried

by Debi Lewis
Xavier Arnau / iStock

I am the mother of two young daughters, and like most mothers, I am worried about their futures. I worry about all the standard, common worries, but recently, I’ve added a new worry: Will their financial future be decimated by health care costs?

Both of my daughters will enter adulthood with pre-existing conditions. My older daughter has a kidney condition that doesn’t require medication or regular treatment, and my younger daughter has a host of historical diagnoses stemming from a congenital heart defect. Both are healthy now — active, bright, and unburdened by anything more than colds and menstrual cramps. Nonetheless, their childhood illnesses will put them into the uncharted territory of the “invisible risk pool.”

The Center for American Progress reported earlier this month that while the American Health Care Act, passed last week by Republicans in the house, will not allow insurers to refuse coverage to people like my daughters, it will allow them to charge more. “Based on our analysis,” CAP writes, “we estimate that individuals with even relatively mild pre-existing conditions would pay thousands of dollars above standard rates to obtain coverage.”

When I read this, I picture my daughters — smart, creative, compassionate people both intending to do good in the world — forced to alter their futures in order to pay 10 to 30 times more than their friends for health insurance. I imagine their path to homeownership considerably longer than mine was or impossible, their ability to start families hindered, their lives necessarily made spartan so that they can remain insured. I picture them paying for their insurance with shaking heads, knowing that it may not even cover the very conditions that raised their rates in the first place.

I worry that the new health care laws will allow insurers to refuse coverage for anything related to their pre-existing conditions. For my older daughter, that could mean no coverage for anything related to her kidneys or bladder. For my younger daughter, that list could include her entire cardiovascular, digestive, and respiratory systems. In my deepest moments of worry, I picture them in doctor’s offices: my older daughter being told by a billing specialist that a urine pregnancy test won’t be covered by insurance, my younger daughter left puzzling over whether it’s worth spending the money out of pocket for a chest x-ray for pneumonia.

On page 19 of the report by the Centers for Medicare & Medicaid Services on risk adjustment, they list the “hierarchical condition categories” (Risk Adjustment Payment Model HHS-HCCs) that determine especially high expenditure risk to insurers. This is governmental bureaucratic terminology that means, essentially, that those conditions are expensive to insure. People with those conditions are likely to be the first ones to see their insurance premiums rise under a repeal of the ACA. The list is not exhaustive — in fact, my older daughter’s condition doesn’t appear on it — but I could easily find codes for my younger daughter. Her codes are HHS_HCC247 and HHS_HCC138. These codes could define her financial potential for the rest of her life.

My worry is not unfounded and, in fact, has been amply tested. The Kaiser Family Foundation commissioned an experiment in 2001 — before the Affordable Care Act — titled “How Accessible Is Individual Health Insurance for Consumers in Less-Than-Perfect Health?” In their study, they created seven hypothetical insurance applicants. Most were single and one was a family of four. Their potential “less-than-perfect” health conditions included individuals with hay fever, a knee injury, asthma, “situational depression” (the insurance-world code for, in this case, a woman mourning the loss of her husband), asthma, breast cancer, high blood pressure, and HIV. The responses from potential insurers are telling. (Note that the study describes unconditional offers of insurance as “clean offers.”)

“Taken as a group, the 7 hypothetical insurance consumers made 420 applications for coverage. Most of the time (90%), the consumers were unable to obtain the coverage for which they applied at a standard rate — only 43 clean offers of coverage were made (10%). They were rejected 154 times (including 9 cases where Colin [a 12-year-old boy with asthma] was rejected but the remainder of his family was accepted), or 37% of the time. Greg [a 36-year-old man with HIV] accounted for 60 of the rejections. Among the 63% of applications that were accepted, the vast majority (53%) imposed benefit restrictions (118, representing 28% of all applications), premium surcharges (56, or 13%), or both (49, or 12%).”

This is the time to which we’d be returning under a repeal of the ACA, made even more unnerving by the repeal of penalties to companies who opt out of offering insurance to their employees. In other words: Our employer-provided insurance may be a thing of the past, and we all might end up on the open market.

Of all the concerns I have about the devastating potential of an ACA repeal, I worry most that the best option my daughters will have for their futures will be to leave this country and live somewhere with socialized medicine. For me, this would be as understandable as it would be devastating. After all, who would want to remain in a country where one’s birth defects — even those which can be repaired and healed — can determine their financial potential for the rest of their lives? As I look at what has happened to health care here, I have come to believe that, among the many ways in which repeal of the ACA will fail us, it will fail to make this country attractive to the young people who will emerge unprotected from and awakened to its flaws.

I worry for my children, and for all of us.