Fighting cancer, fighing for my terminally ill mom, in a broken health care system

John Oberg and his mother Karen Oberg.

John Oberg and his mother Karen Oberg.  (COURTESY OF THE AUTHOR)

At the age of 26, it’s hard to come to terms with the reality that my mom is dying. But facing Stage IV lung cancer, doctors say we probably have no more than a few months left together.

Each day I go through the emotions you’d expect: sadness, pain, anger, then back to sadness again. 

But mom doesn’t let me stay down for long. Every day, she pushes me to make the best of our limited time together. Sharing a laugh, cooking a meal, reminiscing about childhood memories.

Given the circumstances, we're making the best of it. I took a leave from my job so that I can help her around the house. And for the past seven months, I’ve taken her to every chemotherapy treatment.


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But then on Monday, January 20, something happened that even my mom can’t make the best of.

It was the night before she was scheduled to receive her chemo treatment, and we were notified by her hospital, the University of Michigan Health System (UMHS), that her health insurer, Total Health Care, would no longer allow her to receive treatment at their hospital.

After being misdiagnosed at another hospital, all my mom wants right now is quality health care from doctors she knows and trusts at the hospital she has been going to for months. 

It's been the only place she feels comfortable going to in these final weeks. The warmth and compassion from the doctors and staff have formed a bridge of trust that we haven't felt anywhere else.

Upon getting this news, my mom and I felt our already broken hearts break even further. Like we had been kicked when we were already on the ground. And as is usually the case, after the initial shock came confusion, and then anger.

The explanation from UMHS went a little something like this: Total Health Care would no longer pay for her treatment at the hospital, and she would have to be rerouted in-network. 

Total Health Care had been paying for her treatment at UMHS up until this point, so why the sudden change? Your guess is as good as ours.

After spending many hours on the phone trying to get answers, I realized that I was getting nowhere. That’s when I decided to start my Change.org petition. Within a day it garnered 3,000 signatures. 

A few days later, it had more than 30,000 signatures. Now, three weeks into the campaign, more than 185,000 people have signed my petition at Change.org/KarenNeedsHelp, encouraging Total Health Care to give authorization for continued coverage at the same hospital that my mother has been going to already.

This bizarre, frustrating situation has my mother, a Stage IV lung cancer patient covered by Medicaid, in the center of a bureaucratic mess. 

A nightmare. 

To say the decision to suddenly refuse coverage for treatment at UMHS has been disruptive would be an understatement. Her treatment was delayed by nine days. That’s nine full days that the cancer went untouched as a result of this situation. 

Also, this unnecessary burden has caused enormous stress on my already sick mom. But perhaps worst of all, the hours spent on the phone has taken away from the limited time we have left to spend with each other.

Total Health Care’s tagline is “we’re totally there for you,” and yet they refuse to authorize the care my mom so desperately needs. 

It's a sad state of affairs when patients and their families are forced to publicly fight insurance companies just to get the treatment the patient deserves. 

This all can be resolved if the hospital and insurance company work together to help my mom, the patient, get the authorization she needs.

My mother shouldn't be spending her final days worrying about health care coverage when both the insurance company and the hospital have the ability to fix this problem now. 

Hasn’t she suffered enough?

John Oberg grew up in Michigan before earning a degree in Nonprofit Leadership & Management at Arizona State University. He is currently on extended leave from his job as an outreach coordinator for the organization Vegan Outreach.