I grew up in a white middle-class family of teachers with pensions and good benefits. I took a lot of things for granted, including my access to health care. When I was young, I both had my needs met and was generally healthy – so I didn’t have much reason to think about health care until I got my first job out of college. I remember my confusion as I tried to understand my options and find providers, but I figured it out. Personally, I’ve been fortunate that the jobs I’ve had have always given me access to health care. 

However, a series of personal experiences over the past five years has caused me to become much more aware not only of my own fortune, but of the deep systemic policy failures that impact the vast majority of us – from the most to the least financially secure. However, it hits marginalized communities the hardest. 

Those are not my stories to tell. Here I will tell 3 short stories that are mine to share, but that are also community stories. Each of these individual stories has impacted many others, and I feel confident that many of those reading this will relate to one or more of these experiences.

Laid Off

In 2018, I left the job that I had been at for almost two decades to embark on a consulting career. I carefully planned as best as I could for this transition. My last day with my employer was Oct. 3. And then, my husband was laid off on Oct. 4th – the very next day. This was terrifying for many reasons, but the prime one being health insurance. I was thankful for the ACA and the marketplace at that time, but I quickly learned that the independent options for insurance were not particularly comparable to employer sponsored insurance.

It was a scary time, and I ended up taking a new job with an employer who offered health insurance instead of fully launching the small business I had been dreaming of.

Noncontinuous Care

In 2019, my brother was struggling with addiction. We all saw that he was deeply caught up in a downward spiral that we felt powerless to stop. However, that year, on Father’s Day, he checked himself into the hospital. He was finally ready to make a change. He sounded good for the first time in months. I remember the joy in my own father’s voice when he relayed this to me. Once he was stabilized, the hospital had to discharge him before the inpatient rehabilitation center was able to admit him. He died of an overdose 7 days later. It is impossible for me not to wonder what would have happened had he been able to have continuous care during this fleeting moment of hope for him and for my family.

Aging Parents

Around the same time, my father-in-law was dealing with a series of medical problems, including early onset Alzheimer’s and a fall resulting in a brain injury. During this time, my in-laws had signed up for a private Medicare Advantage Plan. Unfortunately, they did not realize it was not Medicare until they were turned down for a rehab stay recommended by his doctors that would have been covered under public Medicare. The private Medicare Advantage Plan said he wasn’t making enough progress to justify continued rehab. At that point, my father-in-law was given very short notice to leave rehab or privately pay for it out of pocket. It wasn’t until he was checking out (having arranged an emergency stay at an assisted living facility for $8000 a month) that they were presented with a form that said they had a right to appeal, and by then it was too late. As you can imagine, the stress of this (and other) experiences was multiplied by the confusion he was already experiencing as a result of his disease. Rather than supporting his health and wellbeing, the stress of this experience contributed to his decline.

Cancer Diagnosis

My final story for this blog takes us to the present day. This summer, my husband was diagnosed with Stage 4 cancer after a routine colonoscopy. At the same time, he was also laid off from his job. Fortunately, we were able to access health insurance through COBRA at a cost of $2200 a month. He’s been approved for Social Security Disability, and because of that he will be eligible for Medicare in TWO YEARS. So all we have to do is cover all of his medical needs for two years while he fights cancer. It’s hard not to feel like the policy hopes he will die before they have to offer him access to a public program that he has been paying into his whole life.

So today, I find myself hyper-aware of health care, and frankly enraged at the lack of access to it in this country. I share my personal stories because on the outside, I think we seem like a relatively financially secure family. And if the healthcare system is failing us at so many levels, I can only imagine how it is impacting folks who are living closer to the margins, or who don’t have financial support from family. Each of these stories was devastating to me without the added stress and pain of navigating systems that prioritize profit over people. We must do better.

I often feel out of my depth as I name and work to challenge these enormous structural problems. It feels very important to me to feel like I can make a difference. While the current national policy landscape feels especially difficult to impact, change at the state and local level feels more possible to me right now. The changes that must be made are structural policy changes, and that’s why I support Kids Forward. 

As a Board Member, I feel that I have the opportunity to support critical policy advocacy work being done throughout the state of Wisconsin. I feel certain that it does not have to be this way. I want my family to have access to health care so we don’t lose any more loved ones unnecessarily, and I want that for you too.

I hope you will join me in supporting Kids Forward, and for fighting for access to safe affordable health care for your family – and for all Wisconsin children and families. We deserve it. We can afford it. We can and should have a voice in decisions. We must imagine another way is possible and begin to co-create that new future together.

Donate to Structural Change in Wisconsin

A monthly gift of any amount will include you in Partners in Equity. This special group of Kids Forward supporters is committed to the long-term investments needed to make structural changes to Wisconsin’s systems to support those furthest from opportunity.