Mom

NOTE: This post was originally published on Medium in February 2020.

My mother died because she did not have health insurance.

Until my parents’ divorce was finalized in 1999, my mother was a housewife. She never finished an undergraduate degree, but she had a good job in PR before she married my dad and had two kids. Through my dad’s job, we all had good health, vision, and dental insurance. We all went to annual check-ups, got glasses and contacts, and got dental work done.

Despite being out of the workforce for 13 years, my mom’s intelligence and her legal knowledge — from years of being married to a lawyer and then from the ensuing custody battle with that lawyer —got her a good job as a paralegal. She enrolled at the University of Pittsburgh to finish her degree in her 40s. She got up early, helped two teenage girls get out the door for school, worked a full 9–5 day, and went to classes at night. She graduated with a BA in Legal Studies in 2002.

Degree in hand, she kept her good paralegal job for a few years, but eventually decided to move to Chicago (not to be closer to me, she insisted, but because she wanted a change) in 2005. That paralegal job was the last job she ever had that provided her with health insurance.

She was chronically underemployed. She worked mostly at call centers, scheduling people for focus groups and doing surveys. Her bosses told her that she was fantastic at what she did, and their clients specifically asked for her to work on their projects. But in all of these jobs, her hours were erratic; 45 hours one week, less than 10 the next. And not one of these jobs provided her with any kind of benefits. No paid time off, no healthcare, no nothing. She spent hours every day online talking to and supporting other people like her — older, formerly upper middle class or middle class, who couldn’t find good jobs and were struggling to make ends meet. She would passionately tell my sister and I about the people she talked to. “You don’t realize how bad it is,” she would tell us over and over. “People are dying.”

As she got older, her health declined. She was overweight and likely pre-diabetic, though she was never formally diagnosed because she never went to a doctor. She was too proud to go to a free clinic. She had sciatica, her joints ached, she couldn’t walk for long distances for a long time.

Every time she complained about this or that, my sister and I would tell her she had to go to a doctor. Her response was always “How am I supposed to do that?” She made too much money to be on Medicaid, because her annual income was too high, despite being unable to afford food in slower weeks. Going on Obamacare would cost too much; the penalty for not having health insurance was cheaper than paying for it. She couldn’t pay hundreds of dollars out of pocket for a check-up. So she lived with the problems and kept on with a constant refrain: “I just need a better job.”

In May 2018, she woke up with a sore neck. She told me she thought her pillow had gone flat and needed to be replaced. She got a new pillow. She tried sleeping different ways. But every morning she woke up sore, and the soreness became pain. It got worse and worse to the point where she was regularly putting stickable heat patches on it and taking Extra Strength Tylenol to go about her day.

And in early July, after months of this pain, she was in the shower and noticed the lump.

She found the Metropolitan Chicago Breast Cancer Task Force online and reached out to them for help. They managed to get her a free appointment for a mammogram on the other side of the city. The train ride would’ve been over an hour to a strange neighborhood and she was already anxious and panicked. A friend of mine paid for an Uber to and from the appointment so she could have one less thing to worry about.

The mammogram warranted enough concern that they sent her for further testing, but to do that, she needed a referral from her PCP. She didn’t have a PCP because she couldn’t afford to see one. So the Task Force sent her to a clinic that would designate themselves as her PCP and help her get on emergency Medicaid due to her mammogram results. She had several mammograms, three biopsies, and an upper body CT scan. She didn’t have a formal diagnosis when she attended my sister’s wedding on July 13, but she was in so much pain.

On July 31, 2018, my mother was diagnosed with triple negative breast cancer. Immediately after our appointment, we had to go to the ER because she was in unbearable pain. She told me to take a picture of her and send it to my sister to show that she “wasn’t dead yet.” This is one of the last pictures I have of her.

We moved her back to Pittsburgh ostensibly to start treatment, but that never happened.

The doctors told us that the tumor in her breast had to have been there for years to be as bad as it was. The reason that she was in so much pain was because the cancer had spread to her lymph nodes, neck, and spine. She was admitted to the hospital on August 12 to try to get her pain under control so that she could begin treatment. We made an appointment for an oncologist for August 14. She never saw an oncologist and never left the hospital.

She died six days later on August 20, 2018.

After all those years of not having health insurance, her emergency Medicaid paid for almost all of the bills. I still receive a few here and there for ER visits that occurred during her brief lapse in coverage between Illinois and Pennsylvania. Over a year after she died, for the first time, I got a bill for her first mammogram in July. That one I ripped to shreds.

But that emergency Medicaid was far too little, far too late. My mother died because she did not have health insurance. If she had had yearly mammograms (as she did up until she lost her insurance), the tumor in her breast would have been caught years before it was finally found and it was too late to save her life.

My mom’s story is not unique. A 2009 study by the Harvard School of Medicine found that 45,000 people die in America every year because they do not have health insurance. In 2018, 27.5 million people in America — 8.5% of the U.S. population — did not have health insurance.

My mom was a huge Bernie supporter in 2016. She followed politics and intensely and desperately wanted a president that would fight for people like her — smart, but underemployed.

Many of the 2020 Democratic nominees support Medicare for All, including Bernie Sanders. Here’s a good primer on it from the New York Times. While I’m a firm believer that any kind of implementation of Medicare for All will be a major step forward in this country, Elizabeth Warren’s plan is the best and most detailed (most of her plans are, compared to everyone else’s). Elizabeth is smart, capable, confident, empathetic, and gets shit done.

Tonight, as I was driving home from phone banking for Elizabeth, I had a good cry and a talk with my mom. I told her I was so sorry for what happened to her and that it was so unfair. I told her that I would fight to do what I could to make it didn’t happen to anyone else, and that working for Warren was the best way that I knew to do that. I told her that she may not agree with all of my beliefs or choices, but I know that she would want me to fight like hell so that no one else suffers and dies like she did because they aren’t insured. So I’ll do just that.

If you’d like to help in my fight, please donate to Elizabeth Warren.

And if you’re one of the lucky people, like me, who goes to your doctor’s office, hands over a little piece of plastic, and leaves without having to pay anything, please remember that millions of Americans don’t have that privilege. We need to change healthcare from a privilege to a right in America.