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