Up All Night

By Rylin Rodgers, Riley Child Development Center

When was the last time you were up all night worrying about something? I hope you had to think hard in order to answer that one because it’s been a while. For most of us, though, it probably wasn’t that long ago. Most of us have the experience of losing sleep due to a health care need – an unpleasant bout of the flu, a fussy sick toddler, sitting bedside with a parent recovering in a hospital. These nights of lost sleep are part of being human, part of the loving support of family. And in most cases extra coffee the following day or even a quick nap is enough to set us back on our path.

In the last few weeks, I have been losing sleep around health care, but for a new and challenging reason. As a parent of children who have complex health care needs, I know how critical access to health care and health care financing is for my family and for millions of Americans who love someone who has a chronic illness, a disability or a pre-existing condition. I am watching the debate about what comes next for our health care system with concerns about my family and a deep awareness of the real life needs of so many Americans and, frankly, I can’t sleep.

My worries are around what coverage will mean, and what will or won’t be covered. What limits and caps will face those needing care, who will be excluded from access because the real cost is more than they can bear, what states will make painful choices about eligibility and who will be left behind?

My restless nights are based on lessons of the past and worries for the future. It was less than 10 years ago when my children’s illnesses and the medical care they needed and our middle class income created an equation whose results were unmet needs, medical debt and constant struggles to access the care that is life for my children.

Health care is complicated; not newly complicated, just complicated. And the needs of children and adults push systems, clinicians and funders for meaningful care that matches both science and human needs. In short the complications mean that our systems cannot meaningfully be reformed or even discussed in a sound bite, stump speech or fast-moving replacement plans.

The proposed American Health Care Act, in fact, provides a guide for sleepless nights filled with worry.

  • A continuous coverage clause that could uniquely punish sick Americans whose illness creates gaps in ability to pay for coverage, leaving them in the end with higher rates when they most need care.
  • The move to replace income-based subsidies with tax credits leaves large gaps between cost of coverage and the support for those whose income has the least capacity to bridge the gap.
  • The repealing of Medicaid expansion and a shift to per capita caps leaving states to bear more of their Medicaid costs and limit eligibility.

When I do sleep, my nightmares are about families and individuals, often with dual incomes, both with and without children or existing medical conditions, going without health insurance. This is about us all. If it is not about you or your family directly it is about someone in your neighborhood, a family in your church, a friend at work — our American family. If our friends and neighbors are struggling to pay their medical bills, they will be struggling in other areas; being on the brink of disaster can certainly keep a person up at night.

Join me in moving past counting sheep. Take a deep breath, then dive in. It is time to push for the needed long discussions across stakeholders, interested groups and most importantly patients and families. Together we must design a system where access is not merely a buzz word but a defined term that considers affordability and real care needs, where flexibility is not an invitation to create barriers to needed preventive and curative treatment, where choice is not the sole purview of the wealthy, but instead available to meet needs. A system that will let all of us sleep a little easier.