Kim Jones Penepacker
“Proton therapy has changed my life and I am grateful that I was able to avoid the risks of traditional radiation. I’m now cancer free and plan to continue my career as a litigator pursuing my passion for helping others fighting similar battles.”
I thought I would spend my twenties developing my skill set as a young trial lawyer, but instead, at 25-years-old I was diagnosed with Stage II Hodgkin’s Lymphoma. Battling cancer in your twenties is one thing but battling your insurer over a life-saving treatment is one fight I never expected.
I finished my last round of chemotherapy three months after my initial diagnosis and was set to start radiation therapy, using intensity-modulated radiation therapy, or IMRT. However, I was concerned about the side effects of IMRT. I was told the side effects could include needing a feeding tube during treatment, loss of taste, and the potential damage to my salivary glands, among other serious, and potentially long-term side effects. I was also informed of the risk of heart attack, stroke, and lung cancer later in life due to the unnecessary radiation of healthy heart and lung tissue caused by IMRT. I knew there had to be a better form of treatment available.
After I did my own research and had an appointment with MD Anderson, I found out that I was a candidate for proton therapy. This treatment would reduce the risk of side effects and minimize the risk of cancer as I age. This was especially appealing as I was only 25! I also learned that proton radiation could avoid radiating healthy, surrounding critical structures. Since my tumors were in my neck and between my sternum and heart, protecting my spinal cord, heart, lungs, and surrounding healthy breast tissue was a critical concern for my future and for reducing my risk of second cancers.
After discovering there was a type of radiation that could minimize the risk for recurrence and second cancers while also avoiding damage to healthy surrounding tissue, I knew proton therapy would be the best option for my long-term physical and mental health. So, I worked with MD Anderson and submitted an insurance claim to Blue Cross Blue Shield (BCBS). The relief I felt after finding an alternative treatment would not last long. My coverage was denied.
BCBS claimed that proton therapy was “experimental.” While the oncology team at MD Anderson told me that obtaining coverage could be difficult, I was encouraged not going to give up. Following the initial denial, I appealed the decision with the help of MD Anderson. It was denied, again. Undeterred, we took the issue to my state representative, Phil King, who helped us appeal the decision to the Texas Department of Insurance for an independent review. After their review, the Texas Department of Insurance found in my favor, requiring BCBS to cover my therapy. They complied, and after a two-month delay, I was able to start my treatment. I am happy to report that I had no side effects, whatsoever, during proton radiation, and I am not expected to experience any long-term side effects. And most importantly, it worked! At my first three-month follow-up last week, we confirmed that I am still cancer-free.
The entire process delayed my radiation treatment by roughly 6 weeks. Throughout the process, I just kept hoping that this delay would not increase the risk of my cancer returning. After months of testing to get a diagnosis, followed by two months of chemotherapy and more testing, I just wanted to finish treatment, get confirmation that the cancer was gone, and move on with my life.
My insurance company stood in the way of that, put my health in jeopardy, and turned a two-week process for radiation into a two-month battle for the care I needed, followed by the two weeks of required radiation. I was also exhausted and sick from chemotherapy at the time coverage was first denied, so the last thing I needed was another battle. It was mentally and emotionally exhausting.
No patient should have to endure this kind of treatment from their insurer. I encourage others facing a similar issue to keep fighting and make their fight public. Get the media involved, if necessary, and reach out to your state representatives. Cancer patients deserve better, and I’m thankful that I explored every possible avenue to get my insurer’s initial denial overturned. I encourage others to do the same.
Proton therapy has changed my life and I am grateful that I was able to avoid the risks of traditional radiation. I’m now cancer free and plan to continue my career as a litigator pursuing my passion for helping others fighting similar battles.