An Open Letter to Sen. Mitch McConnell and the GOP
A post shared by Lynne M. Thomas (@lynnemthomas) on Jun 1, 2017 at 6:09pm PDT
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
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I'm also angered by the GOP's insistence on repealing the Affordable Care Act, particularly the clause about pre-existing conditions.
I was born with a medical condition that is considered severe enough to be a "disability" under the Americans with Disabilities Act (I never considered myself disabled until two years ago, when both my job and my health care were suddenly determined by my disability. I was able to get the job I have because I'm "disabled" and for the year that I was unemployed before that I was able to buy insurance myself for the first time in 10 years because of Affordable Care.)
I don't feel comfortable discussing my health condition in public. But I was diagnosed in college (I actually missed what was supposed to be my final semester of undergrad because I was hospitalized due to my medical condition, and discovering a medication that worked took months. The first one they tried I had a severe life-threatening reaction to - I stopped breathing. The second had the "side-effect" of making me so depressed I was suicidal. The third medication I have been on since I was 25 and properly diagnosed. I did graduate from college - it just took another year. I went on to get two master's degrees.)
But without the Affordable Care Act - my employer-controlled health care can drop me at any time because I'm "too expensive". If I leave my job (and as it's entry-level, this is likely) a new employer can now refuse to grant me insurance because I'm "too expensive". If I go to an employer that doesn't offer insurance, try to become an independent contractor, try to run my own business, or even simply try to buy insurance like I did in 2015 when I was inbetween jobs -- I won't be able to. Just like the 10 YEARS before Affordable Care was passed - insurance companies will laugh in my face and refuse to sell me insurance.
As it is, my current employer-controlled insurance refuses to pay for my medication (their response was "try another drug" - oh, yeah, like the ones that nearly killed me last time?) This is because the monthly cost of the drug is about $380.00 - not nearly as bad as your costs, but it's a hardship when you make $15.50/hr. I applied for patient assistance from the drug manufacture and for the first time in 17 years I was denied. (I have spoken to them and sent additional documentation. Hopefully, that appeal will be successful.) My options if it fails are grim.
I know I'm preaching to the choir - but the whole idea of "profits first/patients last - and screw everyone who's ever been sick a day in their lives" makes me SO angry. Especially when every single civilized first world country has socialized medicine. Especially when other countries see their citizens as people, people who may have medical conditions and deserve the care they need.
With my medication, I can work full-time and contribute to the economy. I can live independently. I have a normal life. Without it I'd end-up in a hospital, nursing home or dead. In my view, that makes Republicans killers.