State Sen. Kari Dziedzic: My cancer journey — an enlightened perspective

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Over my years in the Minnesota Senate, I had rarely found myself working on health and human services policy.

In winter 2023, I was diagnosed with ovarian cancer. This diagnosis launched me into a profound journey through the intricacies of health care, medical access and insurance coverage. I had just been elected Senate majority leader, and when I expressed to my doctor that the timing was terrible, she responded, “There is never a good time for cancer.”

Like many people diagnosed with cancer, I continued my work at the Senate while balancing countless appointments for blood work, MRIs and CT scans, surgery, chemotherapy and radiation.

Ovarian cancer treatment varies if the cancer is hereditary, so I was advised to undergo genetic testing. Despite receiving preauthorization, I was shocked when I received a $6,000 bill. Upon reviewing my insurance plan, I discovered that DNA and genetic testing are covered if deemed medically necessary for treatment determination. Fortunately, I had the capacity to interpret the details of my plan and appeal the charges.

Later, I received another staggering bill for $100,000 and learned that the first chemotherapy treatment was covered, but the next two were not due to a lack of preauthorization. This led to a convoluted process, where I, as the patient, coordinated between my care providers to appeal and correct the oversight.

During the 2024 legislative session, we started making changes to the prior authorization rules to standardize timeline reviews, expedition, appeals and continuity of care. We also ensured prior authorization for chronic conditions remains valid unless there are changes in treatment standards. This is a first step forward to advance the conversation on prior authorization requirements.

In January 2024, my cancer returned, spreading to my spine, and affecting my mobility. I can still feel my legs and am gaining strength every day, but I now use a wheelchair. During this time, I learned that many transitional care facilities often do not accept patients still undergoing treatments like chemo or radiation, because of federal policies. This doesn’t allow patients to undergo therapies that help them adjust to daily life. These policies put patients in a position to choose between treatment or transitional care.

Navigating insurance for necessary equipment, like wheelchairs, is challenging. Most plans cover only one, so I am trying to get a power wheelchair through insurance to help with comfort and conserve energy. However, insurance is denying at least one component recommended by my doctors. I still needed a transport wheelchair to get to appointments, which I had to buy without insurance coverage.

Many essential products for people to keep quality of life, increase independence and maintain proper function, like shower chairs or benches, aren’t considered Durable Medical Equipment (DME), and therefore not covered by insurance. I have been asking myself, “How are people who cannot walk, cannot get into a bathtub or cannot stand for a long period supposed to shower without these aids?” When I lost my hair, I learned wigs aren’t covered by insurance for cancer patients. This year we passed a bill requiring coverage for wigs. However, Congress needs to pass legislation for broader coverage under Medicare for DME to help increase quality of life.

As I continue to undergo therapy to regain my strength and ability to walk, I have received specialized braces. Braces aren’t always covered due to complicated Medicare rules. These regulations could be revised to prevent fraud while ensuring patients receive the support they need. I am sharing these challenges with our congressional delegation and asking them to act.

In my conversations with caregivers, I learned about disparities beyond my experiences. Observation status at hospitals can complicate insurance coverage and discharge options for patients, and monopolies in wheelchair companies lead to significant repair delays, affecting mobility. High drug costs, even when covered by insurance, can further burden patients.

The past two years have brought moments of deep humility and retrospection. I am fortunate to have the resources and time to navigate my medical challenges and the fragmented health care system. I have always understood that not everyone has this capacity, but now I have learned it firsthand and through the stories of others on their journeys.

I want to thank my family, friends, constituents and caregivers for their kind words, support and prayers over the last 18 months. Thank you to everyone who shared their health care stories. While I never intended to focus on health care policy, I am now advocating and fighting to ensure all Minnesotans have easier access to the quality care and equipment they deserve.

Kari Dziedzic, DFL-Minneapolis, has been a member of the Minnesota Senate since 2012.