My Experience With the Affordable Care Act and the Health Insurance Marketplace

I’m getting a bit political, but I promise it’s not bad. I really would like to speak out about what I’ve experienced so far, especially since I have an incurable chronic illness. I am not trying to convince you of anything, I am just telling a story. Mean comments will not be welcomed or approved.

As some of you may know, Arizona is having a huge crisis at the moment when it comes to healthcare. My insurance company will be leaving the marketplace and I will only be left with one option for insurance. In the past two years I have changed insurers 4 times for various reasons.

Recently, my mother has gotten involved and spoke out about this in an article for USA Today.

Read that here

If you follow me on twitter you may be aware that I did an interview with PBS News Hour, and as an introvert this was my nightmare. But, It went smoothly and I believe the news piece should be up by the end of next week. I am still feeling after effects of the anxiety that the interview caused. But, regardless of how I feel now, I feel that I did the right thing.

While the system in place isn’t perfect, I don’t want it to go away. Before the Affordable Care Act (not obamacare, stop using that phrase) I was considered uninsurable. I was denied for simply having the diagnosis of anxiety and IBS. And growing up as a child my family couldn’t afford private health insurance. This was long before my diagnosis of epilepsy. When the ACA came about, my family was elated. We were all able to be insured. And we are still happy with that.

The first hurdle I experienced was when the first company I was insured with through the marketplace dropped out. I had just been diagnosed with epilepsy a few months prior to their announcement and I still needed more tests and new medications. When we got the new insurance, my health was at its worst. This was during my Topamax and Keppra phrase. The lowest point of my life. I couldn’t get emergency CT scans done, or even an ultrasound without waiting for days whilst in the worst pain of my life. I had to see a GP I hated, one who told me that my pain was normal and that I was being silly when I mentioned that I didn’t want to have children. Being mocked was the last straw. Read this -> It’s OK To Not Want Children

We weren’t given any details as to what exactly would be covered or what doctors we could see or even the process for getting tests done. For someone with a chronic illness, being able to have these tests whenever needed is very important. I was also being denied the medication I was prescribed and needed at the time. After many tears and fights, we figured out that we still had time to change insurers again. And so we did.

Again, my doctors weren’t covered and neither were my medications. It also didn’t mention WHERE their doctors were in the state. Turns out, they were far, far away.

So, we switched again. And at this time I desperately needed surgery for my Endometriosis .

Finally, we found the right one. And It’s sad that you HAVE to sign up before you get the real details of how your insurance will work. Planning and preparing is very important to those of us with chronic illnesses. Stopping and starting medications, along with all of the side-effects they cause is risky. And when you find out that you have 5 days of your meds left and no backups and you can’t see your doctor (getting appointments with neurologists can take weeks, even if you are a current patient), panic sets in. All of this while dealing with the pain of endometriosis and the depression caused from the meds.

Being on hold, and never knowing what will come next is terrifying and has been.

This system needs to be fixed. I am at my wit’s end, and my anxiety is at an all-time high because of this. I have an illness that can’t be cured, and without treatment epilepsy can spread to other parts of the brain. Going untreated is a death sentence. I can’t imagine those who are facing this crisis like cancer. Any disease for that matter.

We deserve better. So shame on you Blue Cross Blue Shield of Arizona, you are supposed to be helping, not causing more pain and suffering. I want to keep the insurance I have now, it gives me everything I need and I am now able to be a productive member of society because I am able to get the care I need.

Please let me know if you have gone through this bullshit as well.

 

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