Two Stories of Deaf Americans with Cancer

Lately a lot of my friends have been discussing ACA / Obamacare on Facebook. This is my response.

“Insurance rates will go higher!”

Elise with kids post chemoI am self employed and I had my own insurance policy for over 8 years. At 32 years old I got diagnosed with two forms of cancer. I felt blessed to have insurance – the treatment cost over $300,000. My monthly premium was about $230, with an $8K deductible. With copays for visits every week for over 6 months, OTC medicine, several surgeries, and paying the deductibles, the total cost was about $20,000, not counting the premium payments and lost income.

A couple years later, my insurance pulled out of our state and I lost my rate from before getting cancer. I was without insurance for about a year until I found out about the federal program established by Obama for those with preexisting conditions – the PCIP program that is run by the state you are in. The rate was $209 with an even bigger deductible. When I moved to other state and cancelled it, then went to apply for the PCIP in my new state, I found they were full and not accepting any more participants.

The insurance agents I talked to said that I probably would get declined or pay over $1K a month. Unaffordable on our limited budget. So I applied for state assistance and I don’t qualify. I’ve been without insurance for almost two years now while trying to deal with this insurance situation.

It’s really scary because I’m supposed to be getting checkups every 6 months in case cancer comes back. Fortunately I’m considered as cured – 6 years remission. So I’m not tooooo nervous, but still. I’m considered high risk for developing another form of cancer. Early detection is key.

That’s the story of a young cancer survivor with little children trying to make ends meet while recovering from 6 months of more chemo than most people get (because of two different kinds). ACA will be a blessing.

Sometimes I look at others my age who are way ahead of me and my family financially and I feel like it’s not fair.  My country, my people should all come together and agree on sharing the burden.

So what if it goes up a little bit for a few people, for a lot of other people it allows them to GET insurance or brings their rates down to be the same as what everyone else pays. Good, hard-working people who have children to support and deserve to have the security of health insurance

“Our Medicare program will do!”

Chuck Baird, one of the most talented Deaf artists ever, was on Medicare when he got diagnosed with cancer. Due to the “donut hole” problem, he couldn’t afford to pay for chemo treatment. He got accepted into a few trial programs which worked at first.

I was a “cancer buddy” who would sit and chat with him about the chemo, the side effects, etc etc. When he died, the Deaf community mourned. We lost a great artist who may have survived if he had adequate coverage for a better treatment.

Stories like ours happens all over the USA. THIS  is what ACA is for. For people like us. WHY does it have to become such a political issue? To me, it’s illogical that it has to be political – to me, it’s simple human decency.

PS. If you want to add your story here, feel free to post on comments below. The more stories about REAL people – hard working, not lazy bums on the dole – hopefully we can do our part to win over more people to the ACA cause.

Elise

Elise is a former  journalist turned web developer turned event planner. She is deaf, advocates for accessible technology and ASL literacy, and very opinionated. Her passion is her family - husband Lee, sons Logan and Lucas - and her business.

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