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During my years as a Minnesota senator, I had very little exposure to health and human services policy.
In the winter of 2023, I was diagnosed with ovarian cancer. This diagnosis launched me on a deep journey through the complexities of health care, access to care, and insurance coverage. I had just been elected Senate Majority Leader and when I told my doctor that the timing couldn’t be worse, she responded, “There’s no good time for cancer.”
Like many people diagnosed with cancer, I continued my work in the Senate while juggling countless blood tests, MRIs and CT scans, surgeries, chemotherapy and radiation appointments.
Ovarian cancer is treated differently if the cancer is hereditary. Therefore, I was recommended to undergo genetic testing. Even though I was pre-approved, I was shocked when I received a bill for $6,000. After reviewing my insurance plan, I found that DNA and genetic testing was covered if it was deemed medically necessary for treatment decisions. Fortunately, I had the ability to interpret the plan details and contest the charge.
I then received another shocking bill for $100,000, only to find out that while my insurance covered the first chemo, it would not cover the next two because they were not pre-authorized, which forced me, the patient, to go through a complicated process of coordinating with my provider to appeal and rectify the oversight.
During the 2024 legislative session, we initiated changes to prior authorization rules to standardize timelines for review, expedited processing, appeals, and continuity of care. We also ensured that prior authorizations for chronic conditions remain valid unless there is a change in the standard of care. This is a first step in moving the discussion forward on prior authorization requirements.
In January 2024, the cancer returned and spread to my spine, affecting my mobility. I still have feeling in my legs and am gaining strength every day, but I now use a wheelchair. During this time, I learned that many transitional care facilities, due to federal policies, often do not accept patients undergoing treatments such as chemotherapy and radiation therapy. This prevents patients from receiving treatments that can help them adapt to everyday life. These policies put patients in the position of choosing between treatment and transitional care.
Finding insurance for necessary equipment such as a wheelchair is a struggle. I am trying to purchase a power wheelchair with my insurance for comfort and energy savings, as most plans only cover one. However, at least one of the components recommended by my doctor is denied by my insurance. I needed a wheelchair for mobility to get to appointments, but had to buy one that wasn’t covered by my insurance.
Many products that are essential to maintaining people’s quality of life, independence, and proper function, such as shower chairs and benches, are not considered durable medical equipment (DME) and are not covered by insurance. I have always asked myself, “How can someone who can’t walk, get into a bathtub, or stand for long periods of time take a shower without these assistive devices?” When I lost my hair, I learned that insurance doesn’t cover wigs for cancer patients. This year, a bill was passed requiring insurance coverage for wigs. However, Congress needs to pass a bill to cover DME more broadly under Medicare to improve quality of life.
As I continue my treatment to regain my strength and ability to walk, I am fitted with a specialized brace. Due to complex Medicare rules, braces are not always covered. Reforming these rules can help ensure patients get the help they need while preventing fraud. I have shared these challenges with my congressional delegation and am urging them to take action.
In conversations with caregivers, I learned about disparities that go beyond my own experience: hospital observation status can complicate patients’ insurance coverage and discharge options; wheelchair manufacturer monopolies can lead to significant delays in repairs that impact mobility; and even with insurance coverage, high drug costs can further burden patients.
The past two years have been a time of deep humility and reflection for me. I have been fortunate to have the resources and time to navigate medical challenges and a fractured health care system. I have always understood that not everyone has this ability, but now I have learned it through first-hand experience and through the stories of other people’s journeys.
I want to thank my family, friends, constituents and caregivers for the kind words, support and prayers I’ve received over the past 18 months. I also want to thank all of you who have shared your health care stories. I never intended to focus on health care policy, but now I’m advocating and fighting to make quality health care and medical equipment more accessible to all Minnesotans.
Rep. Kari Ziedczyk (D-Minneapolis) has served as a Minnesota State Senator since 2012.
