For 25 years I had excellent employer-based health coverage. Literally at age 19 I got a full-time job at a tech company and I stayed at that company for 23 years. I had virtually no pre-existing conditions because I’d always had coverage. I had truly excellent health insurance through my employer , so I saw doctors frequently over the years for preventative medicine and to treat my routine sports injuries (I was quite active athletically and had epic weekend adventures camping, hiking, rafting, skiing … kickboxing, triathlons, etc.) 

About 20 years in to my employment I started to suffer the early symptoms of what was eventually diagnosed to be a chronic, incurable auto-immune disorder. I struggled to keep working for a few more years – trying biologic medications which suppressed my immune system and left me vulnerable to infection, and dragging myself to work even when I felt awful. I did it, because I loved my job and my career and my company. After 3 years my immediate manager made it clear that my new disability and symptoms were not conducive to me keeping my job. I wasn’t ready to give up yet, though – I battled to keep my job in every way that I knew how and when it became clear that it was a losing battle, I parlayed my 20+ years of experience over to a better-paying job at a competitor. 

My disability continued to progress and it started to truly affect my ability to do my job, and it took me a long time to realize just how much it was affecting me and the quality (and quantity) of my work in a VERY fast-paced and challenging environment. My new management made it clear that my disability was not conducive to me keeping my job – even with an accommodation. Was it legal for either company? Nope. Is there any way to prove discrimination due to my diagnosed disability? Nope. It was a huge shock to learn that despite 25 years of experience and expertise and stellar reviews and feedback from my peers and colleagues that I was now worthless on the job market due to the unpredictable nature of my symptoms and my ability to function. Because I was single, I didn’t have another income to help soften the blow. After 25 years the lucrative, fun, and challenging career I had -which provided good medical, vision, and dental benefits – was over in the Spring of 2013.

For the first several months I paid a large sum of money to continue my employer-benefits through COBRA. It was about $700 each month. (I had no idea how COBRA premiums were calculated – ouch). I stayed on COBRA for about a year until I figured out how to find a private insurance plan through the ACA. Having the ACA – no pre-existing condition clauses, no lifetime caps – was like a miracle. I had been aware since my diagnosis in 2008 that I was at risk of being uninsurable. Instead, I was able to find a plan very much like my old employer-based plans for far less than the COBRA rate. I was able to keep seeing my specialists, had really good prescription coverage .. . even vision and dental! It was nearly seamless! What a huge relief!

And then .. . unfortunately (?) I was awarded my Social Security Disability benefits in October 2015. I was relieved, because yay! Income! What I didn’t know was that once you are awarded SSDI benefits that you are automatically enrolled in Medicare. You don’t get a choice. Now instead of my ACA policy which – while expensive, got me great coverage for my very high medical needs given my disabling conditions – I’m actually paying far, far money out of pocket for far worse coverage. I have doctors who will not treat me because they cannot afford to see Medicare patients. I have no dental or vision coverage. I have a Medicare part D (and F!) supplemental plan, but the co-pay for one of my medications is $18,000 per year. That’s not a typo. I stopped taking the medication with a monthly co-pay of $350 even though it was effective for one of my diagnoses, and I was just notified by my Sched D insurer that they have decided that the one muscle relaxant which is effective for me will no longer be on their formulary (after covering it for the past 18 months). My co-pays for prescriptions totaled roughly $25,000. Plus another $8500 in Medicare premiums. Plus vision and dental care out of pocket. I was temporarily approved for six months of the most expensive medication, for now. If they don’t renew that program then I cannot afford to take the one medication which both treats and prevents the irrecoverable progression of the disorder which attacks my spine. It’s terrifying to think about.

To recap: I paid $700 for COBRA coverage which was sufficient for my needs. I switched to an ACA plan which was something like $400 per month for similar – and great! coverage. Now? I’m paying more than $700 per month for Medicare Parts A, B, D and F PLUS a ton of out-of-pocket co-pays . . . for no dental or vision, terrible prescription coverage, and I can’t see some of my carefully-chosen specialists. I’m seriously considering marrying someone – anyone – with good employer-based insurance because I cannot afford to neglect my symptoms and I cannot afford to pay any more money than I already am.

The ACA was wonderful, for me. For 25 years I worked hard, paid my taxes, kept active and fit. I did all of the things people say that we should do to take care of ourselves and to be responsible healthcare consumers. Heck, I went to the doctor a bit more often than most because I wanted to stay healthy! 

Now that the ACA is at risk I cannot imagine how the millions and millions of people who have finally been able to seek care, and have been able to sleep at night without worrying that an accident or a bad illness will make them and their families homeless – what are they thinking, now? It was such a blessing. I know it wasn’t without flaws, and I know that some people saw increases in premiums. I’m also aware of how much negotiating and compromise that it took in order to get the ACA passed at all – and with half of Congress and the House doing everything that they could to kill it the whole time. We’d finally made some progress towards a truly civilized society. Access to affordable healthcare should be a right, not a privilege.

Now that even Medicare is on the chopping block according to Paul Ryan, I wonder: do they want us all just to die? I mean, I’ll end up losing my house and going bankrupt first, but when that money runs out I’ll become a burden to taxpayers and then I will die from lack medical treatment and coverage. It’s inevitable. Our country had finally started to move past that archaic thinking! Now with the ACA and Medicare at risk I fear for my future and the futures of millions of sick and disabled kids, adults, and seniors. Apparently now expendable according to the new administration and a majority of the Senate and the House.

Rose Bigham, Newcastle, WA