Four years ago, as my family celebrated Thanksgiving, my daughter Luna, who was only 5 years old, had her first seizure. As I dialed 911, I thought she might be choking, but it quickly became clear that something else entirely was wrong — and we had no idea what.
After rushing Luna to the hospital and enduring the long wait as she underwent hours and hours of testing, we were no closer to an answer. In just the first few days as doctor after doctor searched for a diagnosis, we had already racked up tens of thousands of dollars in medical expenses.
Nearly six months later, Luna had her second seizure and was diagnosed with epilepsy. Her diagnosis was, in some ways, a relief: It was good to know what the problem was. But treating it proved to be enormously challenging. Luna’s diagnosis came with more than two years of medication and near-constant monitoring. While this was a frightening and stressful process for me and my wife, Luna was, fortunately, insured through Virginia’s Children’s Health Insurance Program (CHIP) — so one thing we didn’t have to worry about was whether we would be able to afford the care she needed.
But now, we do have to worry about that. Over the weekend, Congress allowed CHIP to expire, which means that unless the program is renewed soon, there will be no more funding for kids like Luna, who have serious health conditions and need medical care. And there’s no reason to trust that Congress is going to take action anytime soon.
My wife and are small-business owners. We teach music to small children and their families in our community. It’s work we love and care deeply about. But it makes it hard to get health insurance on our own. That’s why CHIP is so important: Because of the program, which provides health care to children of low- and moderate-income families, we could follow the advice of our doctors and Luna could get the care she needed. Luna could see new specialists and go to follow-up appointments without us risking bankruptcy — just the first few days of testing and evaluation cost up to $40,000. Thanks to CHIP, my wife and I could focus on growing our business and taking care of our family.
We’re not the only ones who have benefited from this critical program. In 2016, more than 9 million kids across the country were covered. And since its start, CHIP has provided lifesaving care to millions more, bringing the percentage of uninsured children in America down to less than 5 percent.
Medical bills and bankruptcy are the absolute last thing your family should be worrying about when you’re pacing the hospital corridors wringing your hands while your son is in surgery or comforting your daughter while she receives another round of treatment. You shouldn’t have to debate putting your child’s health at risk so you can continue to pay the mortgage. And you shouldn’t have to worry that a common medical condition such as epilepsy could destroy your life’s work — or your child’s life.
Before the seizures, Luna was very precocious and funny, and very musical. She taught herself to play piano and would play beautiful classical pieces. After the seizures, she became timid and cloudy, and she seemed to forget songs that she loved to show her friends and relatives. It was a scary time, but with CHIP, we were able to get excellent treatment, and she was able to take medications that abated her condition.
Over time, we were able to wean her off the medication, and her life returned to normal. Her confidence and sense of humor are back, and she is thriving at school and with her music. And CHIP has given me the peace of mind that if she stumbles, and needs treatment again, I can focus on supporting her healing.
Nonetheless, the future of CHIP is uncertain. Congress will soon begin negotiations on a federal budget package that includes more than $1.5 trillion in health-care cuts, including even deeper cuts to Medicaid than what was included in the failed ACA repeal bills and nearly $500 billion in cuts to Medicare.
Cuts and irresponsible expirations like these hurt real children and real families all over America. Without CHIP, I could continue on my career path and livelihood, but at tremendous risk to my daughter. Or, I could try to get a job that has health insurance, but that would mean abandoning the business I have built, and I doubt that would be easy to do since I have worked for myself for my whole adult life.
Congress should focus on expanding access to affordable care and fixing the system we have. That starts with protecting our children and the programs already in place to make our families stronger. Families like mine are counting on it, and so are millions of children like Luna.