Dear Representative: Save the Affordable Care Act

Dear Representative Cummings,

I am a legal permanent resident of these United States, currently living in Maryland’s 7th district, represented by your voice in Congress. I am writing to you today to ask you to keep up the fight to preserve the protections contained in the Affordable Care Act, and to work hard to convince your Republican colleagues to reconsider their efforts to repeal the Act. My son’s life may depend on it.

Liam is two and a half years old. He loves to play his ukulele and harmonica, and his favorite planet is Jupiter. He insists on wearing bow ties, he likes to help me make my coffee in the morning, and he tells me every day that he loves me “really much.” He is the greatest joy of my life. Born with a genetic condition called Neurofibromatosis (NF), he has already endured five sedated MRI scans, to watch carefully for growth of the tumors that already threaten his optic nerves and other regions deep in his brain. Every three months, we bring him to the hospital and hold him as they apply the anesthesia mask to his face. He holds his beloved Elmo, and we rock him and sing to him, but he always cries. He cries because he doesn’t understand. We cry because we do.

Despite all of this, he is a thriving and joyful little boy, loving and learning and testing his limits like every other toddler. He sees an ophthalmologist and a neurologist regularly, and he goes to music class on Sundays. He sees a physical therapist and an orthotist for the low muscle tone that come with his condition, and he has soccer once a week.

His extensive medical care is just a part of our life, and we adapt. We are grateful that he hasn’t yet needed any surgeries or serious intervention that would require hospitalization. Other children with NF aren’t so lucky. A day may come when chemotherapy will be necessary to stop Liam’s tumors from taking his vision. Serious and complex surgeries may be needed in the future, to remove painful nerve tumors growing along his spine. And one day, he will grow up and grow out of his dependence on us, leaving him to find coverage for himself. This is why we can’t allow the Affordable Care Act to be repealed.

If lifetime caps on benefits are reinstated, chemotherapy or surgery could have us reaching those caps within a matter of months. If pre-existing conditions clauses are allowed, my son may not be able to find affordable health insurance for himself when he grows up, because of a spontaneous mutation that occurred before he was born. And if anything happens to us to affect our ability to work, we need better options than high-risk exchanges or bankruptcy. Yes, we hope to maintain access to employer-subsidized health insurance, but without protections in place for us and our family, we’re one layoff away from a disaster. That’s a lot of stress to carry, when we already carry so much.

I came to the United States from a country where healthcare is understood to be a basic necessity, and is available to all through the taxes that residents pay into their government. When I moved to Maryland in 2007, I was consumed by anxiety. I had a good job with good health benefits, but what if I were to get sick enough that I could no longer work? What if I lost my job and it took me several months, or years, to find another? It’s common knowledge across the globe that Americans lose their homes when they get cancer, and carry crushing medical debt if their children have special medical needs. The passing of the Affordable Care Act, and the protections it contained, made me feel much safer here. America could be humane about health care after all.

That’s why I can’t understand why so many Republicans want to erase that progress and put stress back on American families and individuals. Surely they also have families of their own. Surely their constituents include families like mine, children like Liam. Why do they want children like my son to be left without access to reasonable health insurance once he’s out on his own? Why do they want to cap how much health care any one person is entitled to? Why do they want us to live in terror of losing our jobs or getting sick? Why do they think that families with sick children need the extra strain on top of what they’re already living? Why do they ignore the voices of the people they represent, and feel that they know better?

Please, sir, bring your Republican colleagues my story. Bring them all of our stories. Please appeal to their humanity and encourage them to do what is best for the people who are depending on them. Liam is counting on you. Our family needs the ACA “really much.”

Sincerely,

Me.




2 thoughts on “Dear Representative: Save the Affordable Care Act

  1. Valerie

    moved to tears. beautiful and powerful. what a tremendous inspiration you and your family are.

    Reply
  2. Tara Shepersky

    You frame the ACA “debate” with such immediate humanity and such devastating clarity.

    This should break every legislator’s heart enough to make them DO SOMETHING ABOUT IT.

    Reply

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