The Center for Patient Partnerships was built from private support. Today, there are many examples of your support in action – from the ability to find life-saving clinical trials for our clients, to scholarships that allow students to have transformative experiences as full-time advocates during the summer. Gifts from people like you make our work possible.
Are you a patient, student, friend or supporter who would like to share your story of impact? Please send an email, video, and/or photo to kelly*patientpartnerships.org.
Support like yours provide the gift of life for patients like Parker. At the age of two, Parker was diagnosed with a rare and deadly brain tumor and the family’s insurance company was refusing to pay for the new treatment Parker’s oncologist recommended. As a result of the Center for Patient Partnerships’ advocacy services, he received experimental treatment that saved his life. Now, Parker is a healthy, happy teenager!
Read more about Parker's story
One evening in November 2002, Center Director Meg Gaines received a call from the father of 2-year-old Parker. Parker had been diagnosed with a brain tumor, and his parents were faced with some tough decisions. Parker was being treated at a teaching hospital. Parker’s oncologist recommended chemotherapy and stem-cell recovery therapy. Despite the treating physician’s solid recommendations, however, the insurer denied payment for this therapy because it was “experimental” and not the current “standard of care.” Parker’s parents did not know what to do in the face of the insurer’s refusal to pay.
After hearing the father’s panic and confusion about how to proceed, center advocates asked him a critical question: “If the worst happens and Parker dies from this disease, what decision today would allow you to say you did everything you could?” Without hesitating, he said, “I would do the chemo and bone marrow transplant.” Parker’s parents were willing to do whatever was necessary to get him the treatment he needed. They mortgaged their home and borrowed to their maximum. Still, they could not begin to cover Parker’s treatment costs.
A student advocate negotiated with a hospital administrator so the hospital would allow Parker to begin treatment without prepayment.
The insurance company never agreed to pay for Parker’s treatment. However, the Center for Patient Partnerships helped his family arrange coverage through a Medicaid waiver program for children with special health care needs. Years later, Parker is in remission and enjoys an active life.
The Center does not file lawsuits or litigate. Seeking no reimbursement for themselves, however, Parker’s parents retained counsel and filed suit against the insurer, asking that the company reimburse Medicaid for the cost of their son’s treatment. Parker’s mother explains, “Those funds are for families who don’t have insurance, and we have insurance.”
At the age of 39, Kirsten was diagnosed with ovarian cancer – and all she could think about in that moment was wanting to see her two beautiful daughters grow up. The Center gave her the hope she needed to get through the most difficult time in her life.
Read more about Kirsten's story
When I was diagnosed with ovarian cancer at the age of 39, all I could think about was wanting to see my kids grow up. I was also overwhelmed with the amount of information out there; it seemed like for everything I read on the internet, there was conflicting information somewhere else. I needed help. My husband, Matt, contacted the Center for Patient Partnerships and spoke with Meg Gaines, who it turned out was also diagnosed with ovarian cancer as a young mother, and is a long term survivor. The immediate sense of hope and relief I felt after talking with her and the other advocates at CPP was instrumental in getting me through the months of chemo and surgeries. They had my back during the most difficult time in my life.
One of the things about getting sick is the amount of expenses that stack up. Even with good insurance, there are co-pays for numerous appointments and medicines, alternative therapies like massage and nutrition counseling; these things add up. Upon receiving my diagnosis, one of the things I had to do was cancel months of freelance work I had lined up, because there was really no telling if I would be able perform my job (and as it happens, that was a good call). Some patient advocates charge upwards of $100 an hour; there is no way our family could have swung that, especially with the absence of my income. The fact that CPP renders its advocacy services at no cost to the patient is truly an amazing gift and asset to our community.
I have been cancer-free for three years now, and look forward to seeing my older daughter, Siv, graduate from high-school in just over a year. My younger daughter, Lula, is about a foot taller now than she was when I was diagnosed. Every day is a gift and I’m living my dream of seeing my daughters grow up. I also know that if the need arises, the Center for Patient Partnerships will always have my back. For this I am grateful.”
Scholarships allow students like Daniel to engage in the Center’s transformative curriculum and explore the field of patient advocacy. Thanks to the generosity of our donors, Daniel received a stipend that allowed him to dedicate his entire summer to working in our advocacy clinic. He immersed himself into the patients’ stories and needs, and knows that he will take this valuable experience connecting with patients into his career.
Read more about Daniel's experience at the Center
One of the most eye-opening experiences at the Center involved working with a client who was looking for insurance options after being diagnosed with chronic Leukemia.
Despite all of the warnings in orientation, I was still very focused on getting at her concerns, finding a solution, and thought we could tack on talking about her feelings at the end. What surprised me is that all she wanted to talk about was how she was raised and her parents philosophy: if you work hard and be responsible with your money, everything will work out. She was so frustrated and upset that she and her husband had done just that – and they ended up in a financially vulnerable place when she got sick.
I was raised with a similar philosophy, and imagined myself in her position. I thought, what if I thought I had lived my life correctly, and at the end of it I couldn’t even take care of myself or my loved ones? I was able to get into that space with her and let her know this is something that’s deeply unfair about the American health care system.
That’s why places like the Center exist, with a mission to make changes on a systems level. I emphasized that she was not alone, and that other people have similar struggles. At end of our conversation, she was in tears and expressed how grateful she was to have someone in her corner. This was a remarkable experience for me since I never imagined being able to be that emotionally connected to someone I hadn’t met and seeing how much she valued feeling deeply heard. I will definitely take this and the other lessons I have learned at the Center into my legal career.”
Field Building & Research
The exponential power of amplifying the voices and experiences of patients to change the health care system is possible because of your investment. See how advocacy intersects with health policy and how patients’ experiences can transform health care as we know it. Learn more about the Center’s contribution to building the field of advocacy and research on the impact of advocacy, integrating patients’ voice into health policy and using patients’ experiences to improve the health care system.