Fall 2022 News: Stories of Hope & Connection!

Advocating for Each and All. Please give today

A message from our co-directors, Jill and Sarah

As the leaves fall here in Madison, we pause and reflect on all we have accomplished together in 2022. We particularly love sharing stories of transformation and hope from students and clients. We have packed this newsletter with a poem written by a student shared at our Health Justice Clinic final reflections, a student navigator's testimonial, and a story of the profound impact of our advocacy for insurance coverage for gender-affirming care.

Through these stories you get a glimpse into the power of advocacy partnerships, and how your support makes a difference!
We are grateful for all we have to celebrate as this year comes to an end! Our family has grown as we have been warmly welcomed by UW-Madison Extension, while staying firmly connected to the Law School and the School of Medicine and Public Health.

We celebrated our lovely new office space and had the chance to connect with many of you at our Fall Open House. Our staff all came together in person for the first time since winter of 2020 for a fall retreat in September (see our smiling faces below) to boldly chart our advocacy path for the next few years.

Thank you for being a part of our mission. Please don't hesitate to send clients to our student advocates or contact us if you have ideas of how we can make the world better for patients and students.

Our best,

The CPP Staff at our Fall Retreat

“Hope and Assistance” – Ashley’s Story About Gender-Affirming Advocacy

By Guy John, former CPP Student Advocate, candidate for dual degree in JD & MA-Education Policy, May 2023

I got the chance to meet up with Ashley, a former client at the Center for Patient Partnerships, to chat with her about her experience going through the partnership with one of our Student Advocates and how things have been for her afterwards. Through her time with CPP, Ashley was able to get her insurance provider to cover her care for facial feminization surgery. Ashley, like many other trans folks seeking out gender-affirming facial procedures, was originally denied insurance coverage. Despite having a well-considered insurance provider, which she has through her job as a critical care nurse, Ashley has been through multiple roadblocks in her efforts to receive care. Originally when she first sought-out gender-affirming care, an individual on the phone had told her that the insurer did not cover any gender-affirming procedures. Later on, Ashley discovered that this was not true and continued forward seeking care.

Value of Advocacy

With her most recent procedure, facial feminization surgery, Ashley teamed up with the Center for Patient Partnerships to appeal the denial of coverage she received. This appeal went all the way to the last review level before successfully being overturned. Ashley communicated to me that navigating insurance coverage has been difficult; she expressed that if it wasn’t for the assistance and support from the folks at CPP, she doesn’t know if she would have fought the insurance denial all the way till the point that she did. Read more on our website.

Student Tesimonial

“In the Resource Navigator program, I have learned both how to communicate with my community about the issues affecting themselves and the Madison community altogether. This experience has also taught me about the gaps in access and health outcomes for Madison, and I will use this knowledge in my future career as an advocate for and potential writer of policies that address these gaps and improve health outcomes for all in my community. The program has opened my eyes and helped me grow as a community partner.” - Travis Miller, Legal Studies with Certificates in Public Policy and Health Policy, December 2022 anticipated graduation!

Resource for Patients and Policymakers on Clinical Trials Now Available

The Center for Patient Partnerships’ Action Research Team – Rachel, Emily, Madison, and Briana – have published a new module on HealthexperiencesUSA.org. In the Clinical Trials modules, patients, families, and policymakers can learn about peoples’ experiences with clinical trials for a range of medical conditions. Read more on our website.

Recent Publications

Developing Catalyst Films of Health Experiences: An Analysis of a Robust Multi-Stakeholder Involvement Journey;

A New Frontier: Patents as Sources of Creative Ideas for Health Care Improvement.

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"NOT REALLY ALONE"

We sit by ourselves, but not really alone

As we wait until 2 to pick up the phone

On a quaint and quiet thursday afternoon,

Their feelings of isolation will evaporate soon

As they share their story of strife, adversity, and unending trials

Unfortunately forged from healthcare denials

And what they have been denied still comes at a cost

As they wander, trapped in the system, feeling lost

Words kept inside until they feel it safe to share

They open up to a stranger, hoping that they may care

Words pouring out, waiting to be heard

As I continue to listen undeterred

That’s all it takes as they speak into the phone

As we sit by ourselves, not really alone

Poem by Lucas Pereira, Genetic Counseling student

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CPP’s Rachel Grob launches New Qualitative & Health Experiences Lab

Through CPP’s enhanced partnership with the Department of Family Medicine and Community Health (DFMCH), our National Initiatives team has launched the Qualitative and Health Experiences Research Laboratory (Q-HER Lab). Housed at DFMCH, the Lab will deepen CPP’s substantial portfolio of health experiences action research. Topics we are exploring at the moment include experiences with Long COVID, with clinical trials, with medical mistakes, with multiple sclerosis, and with various kinds of cancer. We share our work via the web, via “catalyst films” designed to spark improvements in care, and via presentations and publications. Read more.

CPP's Action Research Team!

"Persistence":

Student Advocacy for Insurance Coverage

Many of our undergraduate and gap year students go onto medical school. We recently heard from Hailey Frye: “I am thoroughly enjoying my first semester of medical school at the University of Minnesota- Twin Cities! One of my courses, Medical Arts and Social Sciences, helps us learn more about the healthcare system outside the exam room. We discuss insurance, healthcare legislation, and how to improve system quality. I get to share what I learned during my time at CPP and hope the knowledge will help future providers advocate with their patients.”

When Hailey was an advocate at CPP, she worked with a mother facing a concerning cancer diagnoses while still supporting several kids. The client reached out to CPP after receiving bills with out-of-pocket costs over $10,000. Hailey identified that insurance was not applied. She shared the following reflection:

“The many phone calls I had with insurance representatives reminded me to balance my optimism and pessimism about the insurance appeal process….After waiting the 30 days [for the appeal], the insurance representative told me their fax system didn’t ‘grab’ the fax and that the appeal wasn’t on file…. I sent the fax again, making sure to check that they received the document. I called the appeal department every week for 3 weeks and the representative said the appeal was processing. Read more on our website.

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