Susan Smith

By proton-admin | August 3, 2018

“After consulting with the radiology and cancer experts at UVA, Lesley spoke with a case agent at her insurance company, Anthem, and was told that in her case they would cover proton therapy treatment. We were shocked when Anthem denied her insurance request.”


In February 2017, my 32-year-old, daughter Lesley was diagnosed with Aggressive Large B Cell Lymphoma. She had gone to multiple walk-in clinics and been treated for bronchitis. After suffering for eight weeks, she demanded a chest x-ray which revealed a large 9×13 cm inoperable tumor in the center of her chest surrounding her heart. She was sent to the emergency room for a CT scan and needle biopsy. She started chemotherapy shortly after that and spent the next three weeks in the hospital. After enduring six chemotherapy treatments, Lesley’s tumor shrank by 90 percent. Unfortunately, the 10 percent of her tumor that remained continued to grow rapidly.

Lesley and I explored her treatment options. I work in cardiology and heard about proton radiation therapy from one of my patients. We were sent to UVA hospital for a second opinion. The head of radiation oncology along with other lymphoma specialists recommended proton beam therapy for Lesley because of her age, overall health, and the location of the tumor.

After consulting with the radiology and cancer experts at UVA, Lesley spoke with a case agent at her insurance company, Anthem, and was told that in her case they would cover proton therapy treatment. We made the trip to the Hampton Proton Institute and were confident that Lesley could begin her treatment soon. We were shocked when Anthem denied her insurance request.

Lesley’s doctor and I immediately began the appeal process. We waited two weeks to learn the treatment had once again been denied. Angry and anxious, I contacted the Virginia Insurance Commissioner for an external appeal. The Virginia Insurance Commissioner told me their decision would be final. I also reached out to my Congressman Bob Goodlatte, State Senator Steve Newman, and the president of Anthem. After contacting a lawyer and demanding a third appeal, we were devastated to learn the optimal treatment recommended by several lymphoma specialists was denied once again.

At this point, it had been two months since Lesley had received her last chemotherapy treatment, and the tumor had already grown by 1 centimeter. We had run out of time; the repeated insurance denials had actively contributed to Lesley’s degrading health.

Proton therapy had the potential to be my daughter’s magic bullet, but her insurer seemed to do everything they could to block her from receiving treatment. They denied therapy despite the fact that Anthem’s policy (updated June 2017), the National Comprehensive Cancer Network (updated February 2017), and ASTRO targeting cancer care (updated July 13, 2017), all covered proton beam radiation for the treatment of Lymphoma. With no options left, Lesley began a more generalized radiation therapy that will expose her heart and lungs to unnecessary and avoidable radiation.

As we combed through insurance policies and documents, we realized that Lesley’s case was not unique – Anthem has denied coverage based on language present in an outdated recommendation. In the current insurance environment, we have allowed insurance companies to continue lying to seriously ill patients and their families by using outdated recommendations to persuade patients to pursue less expensive treatments.

The insurance system is clearly broken. We continue to allow insurance companies to lie to customers at their most vulnerable moment, sometimes with life-threatening consequences. Why should we allow insurance companies to dictate a patient’s treatment based on financial calculations rather than doctors’ recommendations? In the environment of uncertainty that surrounds cancer care, patients should be able to rely on their insurance to cover the treatment that their doctor knows would give them the best shot at survival.