An Open Letter to Sen. Mitch McConnell and the GOP

Caitlin and her dad Michael, as she graduates from middle school.

Dear Sen. McConnell,
I’m writing because you are trying to kill Obamacare/ACA, and your choice to do that as Senate Majority Leader could force my child into an underfunded institution, or force my family into bankruptcy. I find this especially frustrating because I was a college classmate’s of your daughter Claire (we were in the same dorm at Smith), so this feels personal.
My daughter, Caitlin, is 14 and she has Aicardi Syndrome, a congenital disorder (i.e. nothing genetic, just a thing that happened). She uses a wheelchair, is tube fed, and has massive cognitive delays related to her intractable epilepsy. Her epilepsy is controlled by a drug (Sabril/Vigabatrin) that is recently FDA approved under the Orphan Drugs provision. The official cost of her meds is about $15K per MONTH before insurance. We tried every other option before Sabril; none worked. On Sabril, Caitlin went from 15 ten-minute seizures per DAY to one or two seizures PER YEAR. We are able to care for her at home, which is cheaper than institutionalization, because Obamacare doesn’t let our insurance company decide she’s too expensive. She would have hit the typical lifetime limit by her 12th birthday.

I am a state of Illinois employee (librarian at a public university) and my husband is a small business owner; I GLADLY pay my premiums for the really good insurance, understanding that it’s only a drop in the bucket. We don’t qualify for Medicaid for Caitlin because we make “too much money.”

Obamacare’s ban on lifetime limits means that we can’t be forced to give up the expensive medication that actually controls Caitlin’s seizures, and we can’t be forced to institutionalize her in a state that has a billion-dollar deficit. Repealing Obamacare means that my family could be bankrupted at the moment when our insurance decides that they don’t want to pay for Caitlin anymore. That would mean that our small business would fold, and we would stop contributing to the economy positively. Our family would be MORE of a drain on the system without Obamacare. We are able to run a small business BECAUSE of OBAMACARE.

Caitlin didn’t choose to have Aicardi Syndrome. She was born this way, and we have been able to give her a pretty awesome life so far. She goes to school (she just graduated junior high) and she is part of a community; she has friends, and a social life. She has family who love her.

Caitlin’s syndrome is fatal; the average age of death is around 18. Repealing Obamacare’s protections is a choice to sentence my family to choose between bankruptcy and institutionalization for my daughter’s possible last years, and you should be ashamed of yourself.

Please, stop hurting families just to score political points. If you properly funded Obamacare, the economy would boom because people wouldn’t be terrified of being bankrupted by illness that they don’t choose to have, and don’t control.

I’ve enclosed a link to my website, which talks about Caitlin’s life a bit, in case you need a face to go with the name.

Cordially,

Lynne M. Thomas

Edited To Add a clearer photo, and to close comments to avoid trolls.

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About Lynne M. Thomas

Lynne M. Thomas is a five time Hugo Award winning editor and podcaster. In her day job, she is Head of the Rare Book and Manuscript Library at the University of Illinois at Urbana-Champaign.
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7 Responses to An Open Letter to Sen. Mitch McConnell and the GOP

  1. Pingback: Healthcare and Open Letters – Jiggery-Pokery's Soup of the Day

  2. jeffgonyea says:

    An intelligently written article, with just enough emotion and edge without having to be profanity or insult laced. Here’s sincerely hoping this letter makes it before the eyes of the Senator.

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  3. Ahimsa says:

    Thank you for writing such an eloquent letter. There are so many stories like this out there. I wish politicians would listen to them and stop trying to repeal of the Affordable Care Act.

    Sending hugs to you and your family.

    Like

  4. I wish I could believe there was some possibility that this letter could touch Mitch McConnell’s flinty little heart.

    Like

  5. Darla Higgins says:

    My heart goes out to you and your family. Raising a special needs child is difficult enough without the threat of losing life saving care for your child. I pray your letter and the letters of those many other Americans in your shoes reach him and soften his heart.

    Like

  6. deeayna says:

    what a touching story. we can only hope that enough republican members in the senate with ‘sense’ sees what damage their new ahca bill is doing for not only the poor, disabled and seniors but also to middle class families. shame on them! shame shame shame!!!

    Like

  7. Pingback: UPDATED: Meet a Family Who Will Suffer if the Republicans Destroy Obamacare. Then Recruit Your Red State Friends to Call Their Senators and Oppose Trumpcare With You – One Thing You Can Do

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