When you go to the polls …

It’s Election Day in the United States for 2024. My husband and I decided to take advantage of early voting here in Florida, so we’re not physically going to the polls today; at the same time, it’s very much top of mind today and it may be for you too. While I’m sure that most people have made up their minds about the candidate(s) of their choice, I’ve been thinking a lot about what people might be thinking about today and felt it important to share a perspective that might be foreign to some.

For the first time in my adult life, I am the closest to a single issue voter as I ever have been. I don’t recommend this perspective since it can become a bit like tunnel vision; at the same time, there are some issues or some positions that are quite literally life or death for someone like me. This isn’t a theoretical exercise, it is a literal life or death issue for someone like me who depends on the healthcare system to stay alive.

As many of you are aware, for the vast majority of my life (prior to 2017), I only accessed the healthcare system in times of minor crisis — pneumonia, ear infections, mono, etc. While I did see healthcare workers more often during my two pregnancies and the two C-sections, I was still healthy enough not to take regular medication or see doctors outside of annual visits. Then, in 2017, life as we know it changed irrevocably and I’ve been tied to the healthcare system ever since. Since my mother’s breast cancer diagnosis happened prior to the Affordable Care Act’s (ACA’s) passage, I have been able to compare her experience to mine in a variety of ways.

Here’s some specifics to remember when you think about who you want in a position of authority in our government:

First, the ACA eliminated the ability of health insurance companies to deny treatment based on a pre-existing condition. I will never forget arguing with insurance adjusters for years over whether a patient could have known about a diagnosis prior to purchasing an insurance policy when the diagnosis occurred after the policy was purchased. It felt like the twilight zone at times since many of the positions taken by insurance company employees would literally require someone traveling back in time to make their position make sense. I had to fight for months with my mother’s insurance company until they finally capitulated and paid what they contracted to pay. While I have had to fight with my insurance company for coverage at various points over the last seven (7) years , they have not been able to interfere with my care by trying to avoid their responsibilities based on an argument that I should have known sooner.

Second, the ACA eliminated lifetime limits. At this point in my treatment for Stage IV Metastatic Breast Cancer (MBC), the amounts paid by the insurance company under the policy we pay for far exceed any of the lifetime limits I was aware of prior to the ACA’s passage. Prior to the ACA, I knew of someone who had a child who needed so many life saving surgeries before she reached one (1) year old that she would never be able to obtain insurance later in life. When I go into the infusion center for Enhertu every three weeks, my insurance company is billed around $98,000.00 based on a recent EOB — lifetime limits don’t go so far when the medication is this expensive; when it is this expensive to stay alive.

Third, the ACA requires that insurance companies cover preventative testing, screening, and any necessary treatment. While we did not have the opportunity to have genetic testing done prior to my diagnosis, everyone in my family who has needed screening based on my diagnosis has been able to do that and continue/obtain health insurance coverage even after the germline mutation in my family has been diagnosed. Between screening, preventative surgeries/medication, and treatment when the mutation has caused cancer, the ACA has meant that my family has been able to select the treatment they decide to pursue in communication with their healthcare providers and insurance companies are unable to interfere with that.

Fourth, the ACA expanded Medicaid (still optional for the states) and established requirements for the policies that can be sold through the marketplace. There are so many different experiences in this category, especially because there is inconsistency across different states, but I have personally seen and experienced how much these protections have helped people in the United States who have been diagnosed with cancer. The sad fact of the matter is that healthcare is so expensive in the US that not having insurance coverage can mean the difference between life and death — seeing a theme here?

Fifth and finally, the ACA limited how insurance companies could change premiums or even benefits based on their risk assessment of the person applying for coverage. We humans have so little power when it comes to negotiating with the behemoth insurance companies and our lobbying as individuals pales in comparison to the lobbying done by insurance companies, focused on enriching themselves and their shareholders. The regulations instituted in the ACA means that we human patients are not penalized for so many things out of our control.

As I began, this information may mean very little to you who is reading this post; at the same time, perhaps it is a perspective that you aren’t so familiar with. Perhaps suggestions of repealing the ACA doesn’t feel like a threat to your life. Perhaps this election doesn’t feel like it could spell the end of your life or the life or lives of someone (or many someones) you love.

That’s where I’m at, the outcome of this election could mean life or death for me and so many people I love.