When older adults across Wisconsin began receiving unexpectedly high medical bills earlier this year, many were left frustrated, confused, and unsure where to turn. What started as individual calls for help soon revealed a much larger problem affecting thousands of Medicare beneficiaries across the state. Since late March, Center for Patient Partnerships (CPP) Legal Fellow Gillian Shimabukuro and Sachin Gupte, Legal Advocacy Coordinator for the Health Justice Clinic, have been working to support patients affected by the changes to a specific section of Medicare coverage known as a Cost Plan. Alongside partners at the Greater Wisconsin Agency on Aging Resources (GWAAR), they helped patients navigate financial challenges and work towards a greater solution.
This month, that work resulted in a major win: the retroactive restoration of significant coverage protections for more than 8,400 Wisconsin Medicare Cost Plan members.
When Coverage Becomes a Crisis
One of those members was Ralph Ciolkosz, a retired teacher who spent more than 30 years in the classroom and now lives on a fixed income. While managing myelodysplastic syndrome (MDS), Ralph relied on regular hemoglobin transfusions to maintain his health. After the Cost Plan changes took effect, he began receiving bills of more than $2,000 per treatment and owed over $13,000 halfway through the year. Faced with mounting costs, Ralph ultimately stopped treatment. While advocating for a broader solution, CPP also worked with Ralph to identify copayment assistance resources so he could continue accessing care.
The issue stemmed from changes to a legacy Medicare Cost Plan that altered coverage for certain Medicare Part B medications, many of which are administered in clinics, infusion centers, and hospitals. These medications are often used to treat serious and chronic conditions and can cost thousands of dollars per treatment. As a result of this coverage change, members suddenly found themselves responsible for 20 percent of the cost of medications they previously paid little to nothing for.
For some patients, the financial impact was massive. Bills quickly reached up to tens of thousands of dollars, with some patients facing costs of over $50,000. Especially in this situation, Shimabukuro noted, “to potentially go from a $0 copayment to $50,000 is quite the jump to not really understand.” Many of those affected were older, retired adults living on fixed incomes who were not only worried about how to pay their bills, but also whether they would be able to receive the care they depended on.
A Partnership Built on Complementary Strengths
As concerns increased, GWAAR contacted the Center for Patient Partnerships. While GWAAR plays an important role in education and technical assistance for older adults, CPP was in a unique position to be able to both engage in advocacy efforts and bring additional attention to the problem. Together, the organizations were able to form a partnership that combined education, support, and advocacy to help the affected patients.
While larger conversations about the coverage change were unfolding, Shimabukuro worked directly with patients who needed assistance from CPP. She helped them understand viable options, located financial assistance programs, communicate with insurance representatives, and identify resources that could help continue treatment. Some patients were connected with charitable assistance programs, while others found support through pharmaceutical company resources or worked with providers to identify alternate options.
Supporting Patients While Seeking Answers
For many patients, access to clear information was just as important as financial relief. One of the biggest challenges throughout the process was a lack of communication from the source, concerning what exactly was happening and why. As Shimabukuro explained, “Most of what they wanted was an explanation and clear communication about what was happening, and that just wasn’t being offered at the time.” Patients often struggled to get answers, and even identifying the correct people to contact proved difficult, as organizational changes with Dean Health Plan and Medica complicated the environment.
Throughout the process, CPP continued to push for answers and progress, ensuring patient concerns remained visible while the Center for Medicaid Services (CMS) and Medica explored potential solutions. At the same time, Shimabukuro and Gupte helped patients continue to access medications and healthcare despite the uncertainty surrounding coverage.
A Win for More Than 8,400 Wisconsin Seniors
Their efforts were part of a much larger collaborative process involving providers, advocacy organizations, insurers, and government agencies. The final solution resulted in implementing a maximum out-of-pocked limit of $5,900 for affected members, providing significant financial security for thousands of Wisconsin seniors and restoring coverage protections retroactively.
While $5,900 remains a large expense, it is nonetheless a dramatic improvement for those who had been facing bills that were several times higher. More importantly, it also provides reassurance that patients will not be left responsible for unlimited costs while receiving the treatment they need.
After months of advocacy, a solution was reached that restored significant protections for more than 8,400 Wisconsin seniors, including patients like Ralph whose access to treatment had been threatened by overwhelming out-of-pocket costs. For Shimabukuro, the outcome was especially meaningful because of the people she had worked with directly. “A lot of them were on very, very limited income,” she said. “Some of them had been working for over 30 years, and to be treated like this after that kind of career is especially undeserving, so I was really glad that they were going to be getting some relief from this.”
Looking Ahead
While some advocacy work remains, including monitoring future coverage decisions and helping members navigate upcoming plan changes, this moment is worth celebrating. After months of persistence, partnership, and patient-centered advocacy, more than 8,400 Wisconsin seniors now have greater financial protection and improved access to the care they need. The experience also reinforced an important lesson for Shimabukuro: “It really took a group effort to make sure that these people were getting what they needed,” with the partnership between GWAAR and CPP demonstrating how education, support, and advocacy can create meaningful change for patients across Wisconsin, turning individual stories like Ralph’s into systemic change that benefits thousands of Medicare members. •