What the ACA Means to Me


*No kittens were harmed in the making of this post. Obviously.

“Oh nooooooo….she’s going to talk about politics!” While I can assure you that I am just as politically exhausted as the rest of you, I am going to broach the subject. Because in today’s world, it appears that we can’t afford not to. And healthcare legislation, being particularly critical to survival at this point in my life, is capturing my attention at the moment.

The Affordable Care Act (ACA, aka Obamacare) may not be perfect, but it has a solid foundation that has brought health coverage to millions of Americans. Building on that foundation and investing in strategic fixes versus a complete gutting would make the most sense in a sane world. But things haven’t been so sane lately, and a full repeal and replacement of the ACA is the most likely scenario ahead of us at the moment. With that in mind, I thought I’d share a little of my story and how the ACA has helped keep my family and me alive and healthy.

No more lifetime spending caps

Before the ACA was implemented, 59% of Americans with employer-based health plans had a lifetime cap, or limit, on their health insurance benefits. While caps varied, 16% of those insured Americans had a lifetime spending maximum of between $1 million and $2 million. Even those with a “generous” cap of $2 million or more could quickly find themselves in trouble if they were diagnosed with a chronic condition or experienced a catastrophic medical event, such as a serious car accident or a premature birth.

Last year I had $619,728 in healthcare expenses covered by Tim’s employer-based insurance. That’s a single year of staying alive, and a cost that will most likely just go up as treatment progresses. It doesn’t take a math genius (which is good, because I’m definitely not one) to figure out that if lifetime spending caps are reinstituted with a repeal/replacement of the ACA, I would quickly run out of financial runway to continue life saving treatments.

Getting insured for pre-existing conditions

When I was in my twenties, I had to pay out of pocket for antidepressants and related doctor’s visits. Like any 20-something kid, that era was punctuated by a number of upwardly mobile job changes, and insurance plan changes to match. And because my major depression was considered a pre-existing condition, new insurers wouldn’t pay for its treatment.

Fortunately I had good doctors who were also generous with their drug samples, but I remember having to make prescriptions stretch and occasionally going without. In 1996 the Healthcare Insurance Portability and Accountability Act (more commonly known as HIPPA) placed limits on insurers’ ability to implement a pre-existing conditions clause, and the ACA further removed these restrictions.

If pre-existing condition health insurance clauses were to become legal and widespread once again, my husband would be locked into his current job so that we could retain the same health insurance. In those circumstances, a job loss would be absolutely devastating.

Coverage until age 26

When I was a young woman, having the ability to gain some financial breathing room by remaining on my parent’s health insurance until age 26 would have been a huge help. The crushing student loan debt I was under in my early twenties was enough of a burden (but that’s another discussion). As a parent, I know that by providing our young adult children with health insurance, we’ve been able to help them successfully transition into the working world without making them choose between essentials like healthcare and food.

These are just a few of the reasons why I’m invested in making sure that our lawmakers don’t throw the baby out with the bath water when it comes to repealing and replacing the ACA. There are plenty more, and I’m sure you have your own “wish list” for whatever health insurance legislation we end up with (I’d love to hear your thoughts).

Which brings me to the impetus for this post. On April 1st, there will be a nationwide March for Health in D.C. and other locations across America. Spearheaded by the fabulous Christel Marchand Aprigliano over at The Perfect D and DPAC, the March for Health provides an outlet to make our voices heard so that any repeal/replace program for the ACA promotes “equitable and affordable access to quality healthcare for all.” This is a non-partisan event, and I would encourage anyone concerned with the future of our healthcare insurance system to get involved. You can sign up for updates over at the new March for Health website.


Welcome to my new blog, Living with Stage IV. Take a seat at your space bar and stay a while.

If you were following me over at CaringBridge, thank you. I wanted a bit more freedom and platform flexibility in communicating with you all (such as being able to answer your comments and questions), and that’s a big reason why I’ve switched over to a fully functioning blog format. And while I plan to primarily use this space to keep my friends and family up to date on my health and to talk about the challenges of living with stage IV cancer, I’m sure I’ll also be veering off into other topics that impact my life and keep me up at night. That’s especially true in today’s political climate where the protection of our civil liberties appears to be as fragile and unpredictable as life with cancer at the moment. But I digress.

Let’s get to a health update first. My latest three-month follow up MRI of my brain was moved up to January due to some nausea I was having. The results were stable – some spots of metastases were slightly larger, some were a bit smaller, but no brand new spots were detected. I’ll go back in April for the next follow up scan.

I’ve had some right side rib pain for the past couple of months, which only hurts when I lie on or place pressure on the rib. When you have stage IV, your mind automatically goes to the worst place when any new ache or pain appears. Case in point – the ingrown toenail I finally had taken care of last week because at first I was sure I had some sort of exotic big toe metastases.

I have to remind myself that I’m almost 50 and of late, have not been very active, so the rib pain may very well just be a strained muscle. My bottom right rib had shown some uptake activity on my bone scans in the past, but nothing on the last CT scan (although the CT is an imperfect test for bone metastases). My oncologist ordered a simple x-ray that should have caught anything major brewing (nothing showed up). When I follow up with him in two weeks I’ll find out if any further testing is warranted. In the meantime, I’ve been trying to stretch out and increase my activity so if it is just a pulled muscle it will hopefully work itself out.

Other than the rib, I’ve been feeling pretty good physically and the fatigue has waned somewhat. I’m still taking my Perjeta and Herceptin infusions every three weeks; it’s been 14 months on those particular drugs and I’m grateful that they continue to work for me.

We are looking forward to a trip to Chicago in June to see old friends, show Tim around Chicago and my hometown, and to see Hamilton (which will cross one item off the bucket list!). If you are one of my Illinois friends, I’ll get in touch as it gets closer to try and find some time to see you!

hamiltonThanks for your continuing messages, visits, and cards. They always make my day a little brighter. I look forward to being a little more frequent in my posts now that I’m on the blog. If you want to be alerted to new posts, please feel free to sign up for email alerts by clicking on the Follow button on the right side of your screen.

Until next time,