Denise Durgin

By proton-admin | October 10, 2019

“As this was happening to me, I thought; how can I help other people navigate the insurance process? It seemed so unfair and unjust!”

In January of 2018, after a routine mammogram, I received the dreaded call that roughly one-in-eight women receive in the United States: “your biopsy tested positive for breast cancer.”  By March, I underwent a mastectomy, had lymph nodes removed and reconstructive surgery.  Two days after my surgery, the doctor called to tell me the cancer had spread to a lymph node and needed radiation treatment for stage 2B Invasive DCIS breast cancer.  Shortly after meeting with Dr. Michael Eblan, he recommended proton radiation therapy due to a family history of heart disease plus my own heart condition.  As if cancer, surgery, and treatments weren’t difficult enough, this is when the unjust stress began.

As part of the normal peer-to-peer review processes, Dr. Eblan sent in a request to UnitedHealthcare (UHC) to begin proton therapy treatment. The next day I was denied coverage.  With my doctor’s recommendation and despite being a cost-neutral treatment plan, UHC deemed proton therapy treatment “not medically necessary.” This rubber-stamped denial delayed my cancer treatment.

Dr. Eblan appealed my case a second time; again, it was quickly declined.  As Dr. Eblan prepared his third appeal to UHC with a nine-page case study, I called UHC to advocate for myself as I learned the peer-to-peer medical reviewer wasn’t a radiation oncologist.  I asked the customer service associate if I could speak to the doctors that reviewed my case, and shockingly, UHC wouldn’t disclose the name of the doctor’s that declined my case.  Instead, they said I could appeal my case by faxing them a letter.  I was stressed and frustrated at UHC, who advertises on their website; “connecting you to care that works for your life; talk to a doctor whenever.”

As I navigated this process, the fact that the cancer could spread haunted me. The tumor in my lymph node had an extracapsular extension, which meant it grew outside the lymph node wall, and no one knows where it goes from there.  I consulted my doctor’s on what to do next, and I found out that; “my risk for re-occurrence increased for every week I delayed treatment.” I needed to start treatment immediately as it was now just two months since surgery, and I wasn’t in cancer treatment.

Backed against a wall, I made the decision many proton therapy patients are forced to make; I would pay out-of-pocket for treatment. As I made that choice, a miracle occurred.  After a peer-to-peer review with a radiation oncologist at UHC, they overturned my denial and covered my treatments. Three days later, I began treatment at the Maryland Proton Radiation Center.  Dr. Eblan’s persistent care and positive approach helped me during such a stressful time.

As this was happening to me, I thought; how can I help other people navigate the insurance process? It seemed so unfair and unjust!  To that end, I created a website called Proton Radiation Buddy, a resource that helps patients going through proton radiation treatment, many of whom have had to battle for insurance approval.   I also decided to volunteer my time toward improving the patient experience.  I now Co-Chair the Global Patient Family Advisory Board at The Beryl Institute, and I also serve on the Inova Schar Cancer Institute’s Patient Family Advisory Council.

Since completing treatment in June 2018, I’m doing great! I’m thankful for the team at the Maryland Proton Treatment Center, Dr. Eblan, my family, friends, and everyone that worked so hard to get my case approved.  I’m here telling my story so that I can help turn an unjust situation into a positive outcome for others.  As Martin Luther King Jr. stated, “Injustice anywhere is a threat to justice everywhere.”