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In Case You Missed It, Dr. Chelsea Lewis, a Manchester physician whose daughter's health care depends on the protections guaranteed by the Affordable Care Act (ACA), is calling on Governor Chris Sununu to join the 21 states suing to protect health care in response to President Trump’s recent efforts to strike down the ACA. Trump’s full repeal of the ACA would leave tens of thousands of Granite Staters without health care, especially hurting those with pre-existing conditions and those seeking substance use disorder treatment.
Twenty one states are leading the lawsuit to protect the Affordable Care Act and protections for pre-existing conditions, including four states with Republican Governors (Iowa, Kentucky, Massachusetts, and Vermont). Governor Sununu has not directed his Attorney General to join this lawsuit, or taken literally any other action to oppose the Trump administration's efforts to end these protections, Medicaid expansion, and guaranteed coverage of essential health benefits.
LAST MONTH, THE Trump administration announced that it wanted the entire Affordable Care Act to be repealed by the courts. That would end coverage for people with pre-existing conditions. The end of Medicaid expansion. Millions of adult children would be kicked off their parents health insurance. And it would create an impossible choice between bankruptcy or denying my daughter the treatment she needs to live a normal life.
Our best hope are the 21 states defending the ACA from the Trump administration’s efforts to overturn it. Encouragingly, there are both Republican and Democratic governors leading the defense. Unfortunately, Gov. Chris Sununu isn’t one of them. Sununu is standing with the President instead of Granite Staters worried about our health care. He has the opportunity to lead by joining the lawsuit, but he has chosen not to. He has said it’s too late, even when Republican attorneys general in Montana and Ohio spoke out just a few weeks ago.
While senators and representatives from both parties in Congress are fighting to save the ACA in Washington, the governor is passing the buck.
Gov. Sununu needs to understand the stakes of his decision not to defend the ACA. So, governor, here’s my story. He should know what his decision to stand with the President on health care means to people like me.
Two days after the birth of my daughter, she was diagnosed with Tuberous Sclerosis. Essentially, she had benign tumors in every organ in her body, including her brain and her heart. Then, after 48 hours of life, her seizures started. Fortunately, my husband was serving in the military, and our Tricare covered everything — from her medications to her brain surgery. We were able to keep her healthy.
After my husband got out of the military, health care became a big problem. You see, my daughter has a complex form of epilepsy. Despite the fact that her doctors had been providing her with effective treatment, our new insurance said it was too expensive and started suggesting alternatives. Can you imagine that? Our insurance, not doctors, said they wanted to stop her treatment because of the cost.
And it only got worse. By the time she was a year old, the entire left side of her body was paralyzed. The insurance company said they would cover some physical therapy, but they would cap it at 30 appointments. For her lifetime. After that, it would be on us to foot the bill entirely.
Who on earth could afford to pay for that out of pocket, for the rest of her life? My husband and I are both physicians, and we certainly could not. Essentially, they were saying, “Sorry, but your daughter will likely have to stay paralyzed, and never be able to have a job to support herself.”
Today, my daughter is 4, and she is doing great. We moved and found insurance that will cover her care. But her health-care expenses far exceed the lifetime caps that insurance companies used to institute before the ACA.
It’s a perilous time for families like mine. If the Trump administration is successful in striking down the ACA entirely, then our insurance could just refuse to cover her, because of the treatment she has already received. What kind of person could look a 4 year-old in the eye and tell her that she doesn’t deserve health care?
They would be sending a message that she has exceeded her worth in this world. “Whatever you have to contribute to this society is not worth the cost.”
We pay the maximum out-of-pocket premiums every year to keep her healthy, but if they strike down the ACA, there’s no way we will be able to afford it. We would quickly end up in medical bankruptcy. It will affect every aspect of the rest of our lives.
I know my story is more dramatic than most. But my husband and I are both health-care providers and every day we see what other families are experiencing. People with diabetes are already being priced out of their insulin and test strips. Without the ACA, that pre-existing condition could be enough for any insurance company to deny them care.
We can’t afford to go back to a time when health care was reserved exclusively for Americans of means. We need New Hampshire to join the other 21 states fighting to save our care.
The governor and state legislature need to hear our stories.
They need to stand up for us against Donald Trump because the stakes are too high not to.
Dr. Chelsea Lewis is a physician in Manchester.
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