changing health care, disability justice

Repealing the ACA will kill disabled people

With the proposed changes coming to healthcare, I can’t afford to tiptoe around the situation.
Repealing the Patient Protection and Affordable Care Act will kill disabled people.
50 million Americans with disabilities depend on the protections that the ACA provides. The CDC recently came out with statistics that show that nearly half of all Americans live with at least one chronic illness – and they depend on the ACA, too.
Before the ACA went into effect – before I even started this site – I was uninsured for a while. While my father kept insurance on me until I was 18 as a part of child support, mother didn’t utilize it at all. Without continuity of care, I suffered immensely – not just pain but issues that wouldn’t have happened had she gotten me the right (or any) medical care.
Once I hit 18 and got into college, I was concerned about what to do. I knew I needed to get medical care but couldn’t afford anything.
2007 Kirsten
When I met T, I started trying to get quotes from insurance companies. I was very upfront about the fact that I had multiple chronic illnesses… which led to a lot of sad phone calls and emails. One memorable phone call with one representative got me to give up. I was told that it would be $2200 a month for coverage and that it would not cover anything related to my pre-existing conditions.
Since my diseases affect every single part of my body, there was no point to this. I obviously couldn’t afford it anyway.
I eventually was able to get coverage through our college’s partnership with an insurance company. It didn’t cover much, though, and I began to go into medical debt quickly. Luckily, some of that was forgiven as the hospital I saw my first adult rheumatologist at had a great forgiveness plan for us poor people.

Thank you Froedert Hospital.
Still, it was a constant fight. I had to get things rediagnosed or diagnosed at all. This meant far more visits than the average person has in a year with the accompanying blood draws and everything. I moved which meant transferring that care and then dealing with insurance not covering a lot…
which meant more medical debt (that we only recently paid off).
I’m lucky enough that I’m married to someone whose insurance covers me. It’s good insurance and allows me to have access to the specialists I need to see.
Not everyone is so lucky.

Others with disabilities or chronic illnesses rely on more services than I usually need. Others are better at seeking out the care they need than I am. Others simply have different needs that wind up costing more like wheelchairs and other equipment – along with the medical visits for physical therapy, etc. 
Hell, if T and I ever got divorced? I’d be practically as good as dead. There are worries that these efforts will force those of us who need healthcare access to stay in abusive relationships because, like me, they need that coverage.
My family will still be affected by the ACA repeal. People in my family or group of friends will lose medical care making access to the life-saving medications and treatments they need nearly impossible. More people will go bankrupt or lose their homes as a result of medical issues. Others will no longer be able to afford to live in more accessible housing, accessible transportation, and more.

Some will die.
The ACA provides protections for many people – things that are often overlooked when we talk repeal. 
It provides access to free contraception, yes, and better access to reproductive health care – but it also allows children up to age 26 to stay on their parents’ insurance plans. 
It provides coverage for people through subsidies, but also (finally) makes good on a centuries’ old promise to Native Americans to cover their health needs. 
Clinics in rural areas who depend on the ACA protections to keep them going will go out of business and jobs will be lost.
The things I care about the most? CHIP – the Children’s Health Insurance Program – and coverage for our pre-existing conditions? Those were basically just dumped.

If little Kirsten was young today and lived with a parent that wasn’t abusive? She would be incredibly screwed.
It’s not enough for those now running our nation to take progress back – they have to enact legislation that will remove protections for those of us with disabilities and pre-existing conditions. They have to kill us before they’ll be happy.

Write to your legislators. Call them. Tell them how this will affect you and nearly half the nation. Tell them that, like me, you’re not ready to die for their petty politics and racist ideologies.

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  1. It makes me sick to even think of it. I am so sad to be a man.

  2. I don't live in the US and to me, it seems like insanity that this is even up for debate. I can't get my head around the situation at all. I truly hope that the ACA stays.


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