State: New Jersey
“I [spoke] with various lawmakers at the state and national level to work towards increasing funding for pediatric cancer research and establish a new fund in New Jersey.”
My name is Grace, and I’m from Long Hill, New Jersey. I love playing softball and doing gymnastics and dance. Since I was four years old, every time I had a birthday party, I asked my friends to donate to St. Jude’s Children’s Research Center instead of giving me gifts. When I was nine, I held a dance-a-thon fundraiser for a charity called the Valerie Fund. I’ve raised more than $40,000 and was named an ambassador for the American Childhood Cancer Organization.
Even though I helped sick kids, I never expected to be sick myself! When I was nine, doctors discovered a mass on my pituitary gland. They said I had a germ cell brain tumor, which I found out is a very rare cancer. I really didn’t have any symptoms, except that my parents noticed I was always drinking water, and my growth was slowing down. They took me to a lot of doctors, and I ended up getting chemotherapy at Newark Beth Israel Hospital in Newark, NJ. My doctors said that I should have proton therapy treatment after chemo. I received those treatments at the Laurie Proton Therapy Center at Rutgers Cancer Institute of New Jersey. The treatments weren’t that bad, but I had to stop softball and gymnastics and missed part of my third and fourth grades – but the school let me keep up with classmates by a robot – that was pretty neat.
Because of my fundraising for sick kids, I was invited by the White House to attend the State of the Union. I got to sit right next to the First Lady, and the President asked me to stand in front of everyone! I also spoke with various lawmakers at the state and national level to work towards increasing funding for pediatric cancer research and establish a new fund in New Jersey.
So, it’s been quite a year for me, and I’m glad life is getting back to normal, and I’m back at school and my activities. I’m planning to keep fundraising for other sick kids. My family has been so great throughout everything, and we all feel lucky that I was able to get proton therapy. I hope other kids who need treatment like I did are as fortunate.
“I look forward to going back to school when I am able to drive again. Meanwhile, I plan to run the New York City marathon as part of the National Brain Tumor Society Team next fall.”
I love to run – it’s my true passion. However, that passion was totally and unexpectedly upended by major health issues.
It started with vision problems in January of 2018, while I was studying in an accelerated nursing school program. I was 27 at the time, and I initially assumed that the intensity of my nursing program was causing me to have problems seeing. When I switched to the regular program in the fall of 2018 and started seeing bright spots, I blamed it on not eating right. Still, the spots persisted, and by the end of November, I was having severe headaches.
On a trip with my family, I was looking at a sign and could only read half of the words. The headaches continued through January, but one night while visiting home, the throbbing pain was too much, and I knew I needed to see my family doctor.
After seeing him the next day, he immediately sent me for an MRI. I unexpectedly discovered I had a brain tumor. Two weeks after removing the tumor, I found out I had stage 4 glioblastoma. In February of 2019, after speaking with one of my dad’s friends, I started seeking out information about proton therapy.
My oncology team agreed that proton therapy would be the best course of action for me, and I made plans to go to Orlando Health to begin treatment. Unfortunately, my insurance company kept denying treatment. It was only when Dr. Ramakrishna at Orlando Health went to bat for me that I could start proton therapy. It was a long month of denials and appeals. I will never forget the stress of sitting in my hotel room, ready to start treatment, yet not knowing if my insurance company would cover it.
They finally did, and I am delighted to share that my treatment and surgery are behind me. I am learning to live with the fact that my vision will never be the same again. I never gave up running during this ordeal and am slowly but surely getting my life back to normal. I look forward to going back to school when I am able to drive again. Meanwhile, I plan to run the New York City marathon as part of the National Brain Tumor Society Team next fall.
Through it all, I have supported by so many people – I even received a letter of encouragement from President Trump! My faith has kept me optimistic and I continue to feel very blessed, and fortunate that I was able to receive proton therapy.
“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.”
Cancer: Tongue (Squamous Cell Carcinoma)
“Cancer patients deserve fair, timely, and transparent access to care. Now that I’ve experienced the power of protons firsthand, I plan to advocate for greater access.”
My story began with a sore throat – one that lasted over three years! The problem went undiagnosed until I began coughing blood one night. An EMT found a mass protruding from my tongue. At 42 years old, I was diagnosed with tongue cancer.
My diagnosis came right before Christmas in 2017. It was no gift. The next few weeks were confusing as I tried to understand my diagnosis and treatment options. I started reading online sources and quickly became overwhelmed by all the information about different treatment options. Thankfully, the father of a friend who battled cancer introduced me to proton therapy. From visits with several specialists, I learned that traditional photon radiation could leave me with life-altering side effects, ranging from impaired vision to the possibility of facial deformities and the inability to eat solid food or even speak.
Proton therapy had the ability to precisely target my tumor while sparing the surrounding healthy tissues, meaning minimal side effects. The choice was easy.
Three days before my first proton treatment at Mayo Clinic in Rochester, my insurer denied me access to my doctor-recommended proton treatment and insisted I receive photon radiation instead.
At Mayo Clinic, the costs for proton and photon radiation were the same, but a lifetime of side effects from photon radiation would likely cost my insurer more over the long run. There was no excuse for their denial. My doctors and I appealed the decision immediately. I was concerned about the consequences of delaying treatment, but my oncologist remained upbeat. She assured me she wouldn’t stop fighting.
She wasn’t kidding. My doctor spent over 50 hours fighting to overturn the denial. I didn’t fully appreciate how broken the appeals process was until my doctor told me about a peer review she had with a doctor from my insurance company who told her, “It’s my job to deny this regardless of what you say.” That’s when it became clear that I had to take on this fight myself.
I reached out to state and federal representatives and the governor of Illinois for help. My Illinois State Representative Mike Unes got back to me within hours. I heard from Representative Unes and his staff daily. They were engaged in my fight every step of the way. Other politicians, including my U.S. Representative Darin LaHood, kept in touch frequently.
I had an army of support behind me that helped elevate my fight to the Illinois Department of Insurance. But at this point, my doctors wouldn’t allow me to wait any longer to begin treatment. So, I would have to start treatment with the uncertainty of how to pay for it.
At 5 o’clock on the morning of my first proton treatment, an insurance representative at Mayo got a phone call from the Illinois insurance commissioner, saying my access to proton therapy was approved.
I feel strongly that the tenacity of Representative Unes and others fighting for me influenced the company to act. It shouldn’t take the intervention of elected officials to force an insurer to do the right thing.
Insurance is a business. It is an investment that people make for their futures; it’s gambling on life. The “house” is always favored, yet, the responsibility the insurer has to its clients should not dictate the type of treatment they receive.
Cancer patients deserve fair, timely, and transparent access to care. Now that I’ve experienced the power of protons firsthand, I plan to advocate for greater access. I’ve gotten to know my elected officials and plan to call on them to pass legislation that’ll hold insurers accountable.
It has now been a full year since my last proton radiation treatment. My one-year PET scan in early March showed that I remain cancer free. I have no appreciable side effects from the proton radiation treatments. I’m still waiting on a “thank-you” card from my insurer for saving them so much money.
Cancer: Hodgkin's lymphoma
“I was thrilled to begin proton treatments, which could reduce the side-effects I experienced, improve my long-term health, and potentially lower my risk of developing secondary cancer.”
It’s said that Disney World is the happiest place on earth, and I couldn’t agree more! Since my family moved to Jacksonville several years ago, I’ve made many trips to Disney. I’ve visited each park and ridden countless rides. My favorite park has always been Animal Kingdom because of its wildlife. It’s amazing to see such exotic animals up close and personal.
Ironically, it was while I was at Disney World that I received a call from my insurer, informing me that my access to proton therapy for my Hodgkin’s lymphoma had been denied.
After I was diagnosed with cancer in May 2018, I initially received chemotherapy to treat my cancer but, as a result, my white blood cell count became low. My oncologist gave me the option to finish out my remaining chemo treatments or to pursue radiation. I was so fatigued from chemotherapy and was set on seeking another form of treatment.
I looked into traditional radiation and learned that, if I pursued that treatment, there was a risk that I could be diagnosed with breast cancer down the road. That absolutely terrified me. In the midst of my search, a dear friend I met through chemo introduced me to proton therapy. She told me, “Before you proceed with radiation, you absolutely have to check out Ackerman Cancer Center.” I took her advice and met with the Ackerman team in Jacksonville.
In considering my best treatment option, the Ackerman staff valued my quality of life above all else. The team recommended proton therapy for me, and I was on board. I was thrilled to begin proton treatments, which could reduce the side-effects I experienced, improve my long-term health, and potentially lower my risk of developing secondary cancer.
As you can imagine, I was deeply upset when my access to proton therapy was denied. At 25 years old, I did not want to settle for a less-precise treatment and expose myself to potential risks.
Ackerman offered to cover the cost of my proton treatment. This signified how critical and life-changing proton therapy is, especially for a young adult cancer patient like me. The Ackerman team also worked hard to appeal my denial. My oncologist was able to convince my insurance company of the treatment’s medical necessity, and I was approved.
Beyond treatment, my day-to-day life remained normal. The only side-effect I experienced was fatigue. But I was still able to keep my full-time job.
I was the 1,000th patient to complete treatment at Ackerman Cancer Center. I’m amazed by Ackerman. Its therapy and support were instrumental in my journey. The team has built is an incredible experience for any cancer patient.
Now that I’m cancer-free, I am excited to engage with other cancer patients and am humbled to be chosen to share my experience with others.
Check out Alyssa’s YouTube channel — the Persevering Princess — to learn more about her journey!
This adventure wouldn’t have been possible without the help of proton therapy to fight my prostate cancer.
When I was diagnosed with prostate cancer in April 2017, I was no stranger to the illness. My father, youngest brother, and four uncles all battled the same disease. I was faithful to annual exams and prescriptions from my urologist. But it wasn’t until I took notice of a slowly-increasing PSA that I had a jointly-decided biopsy.
I’ll never forget the phone call I received when the results came back. I was at lunch with a friend when my doctor told me, “You have prostate cancer.”
As a retired U.S. Navy Master Chief, I knew I had a mission. I got to work right away, devising a plan of attack for my diagnosis. My first two stops were to the Naval Hospital Jacksonville and one of its partner practices, Northeast Florida Cancer Institute, to talk through my treatment options. They recommended three different options: “nerve-sparing” surgery, photon radiation, and active surveillance.
My daughter convinced me that I could not just live with cancer inside of me and not take action. The treatment options I had been presented made me uneasy, so I decided to continue exploring.
At this point, no one I met with even so much as mentioned proton therapy. However, I had heard of the treatment from friends, shipmates, and Ackerman Cancer Center, a proton center in Jacksonville. One former Ackerman patient shared the center’s contact information with me, and I placed a call.
Imagine my surprise when Dr. Scot Ackerman himself answered the phone! Not only did he take the time to discuss my case, but he extended an invitation to come in for a visit. 30 minutes into my in-person meeting with Dr. Ackerman, I decided to seek proton therapy at Ackerman to treat my prostate cancer.
As a user of TRICARE PRIME since retirement in 1995, I needed a referral from a urologist to begin proton treatment. However, receiving that referral from the urologists I’d met with previously was a bit painstaking. Fortunately, patient support and my primary care doctor stepped in and agreed that I should be able to choose my treatment. He gave me the referral.
I began treatment at the Ackerman Cancer Center two weeks ahead of schedule, a thrilling and unexpected development. For me, that meant I was two weeks closer to being cancer-free.
My treatment took a total of 40 days. Once completed, I worked with the Ackerman staff, discussing “my” recovery in order to get back to “my” new normal, still dealing with an enlarged prostate.
During this time, I lost a sibling and my father within three months of each other. I met with Dr. Ackerman for my one-year follow-up, and he encouraged me to live out my dream of getting back on the road, something I’d talked so much about. Now, my wife and I are embarking on a cross-country RV trip!
Along with my mother, we are on one-month visits of a host of cities, including Austin, Albuquerque, Colorado Springs, Denver, Las Vegas, San Diego, Huntington Beach, and Ventura County. This adventure wouldn’t have been possible without the help of proton therapy to fight my prostate cancer.
Now that I’m cancer-free, I am dedicated to helping raise awareness of proton therapy for other cancer patients and supporting the Ackerman BEAM Team by helping other patients.
In addition to fair access to treatment, I’m using my experience to encourage other men to talk to their doctors about prostate issues. I’ve noticed that there tends to be a fear of prostate exams and talking about prostate cancer treatment options. As tough as these things may be to discuss, no one should die of ignorance.
I am so grateful that I was able to receive treatment from a great center and that I did not have problems getting coverage. Everyone should have the same access I had to doctor-recommended treatment.
As a physical therapist, I’m used to advocating for my patients, but I never thought I’d have to advocate for myself. That changed on November 13, 2017. I was on vacation in the Dominican Republic with my husband, twin sister, and best friend when I suddenly had a seizure. I went to a hospital in Punta Cana, where the staff wanted to transfer me to a facility with an MRI but at that point, I just wanted to go home.
Thanks to the maneuvering of my sister and best friend, I was able to catch a flight to Philadelphia and went straight to the University of Pennsylvania, where, after undergoing testing, I was diagnosed with a brain tumor. I was in shock.
One month later, I had the tumor removed. When I first woke up from surgery, I had almost full right sided neglect, meaning I had basically no awareness on the right side of my body. Although my leg came back quickly, my hand took longer. I couldn’t even hold a pen for several weeks.
My neurosurgeon informed me that he was able to successfully remove 90-95 percent of the tumor. He then gave me the option to either undergo more surgery or chemotherapy and radiation. I knew surgery wasn’t the right option. I didn’t want to compromise the years of work I’d done to get my doctorate degree in physical therapy, only to lose the use of my hand.
That’s when I spoke with a neuro-radiation oncologist at Penn who told me about proton therapy. I was a great candidate because I was young and had a job where I needed hand strength as well as all of my cognitive faculties, and based on the location of the tumor, there was the risk of damaging healthy tissue around it with other treatments. This seemed like my best option. However, my insurance company, Cigna, denied my request for access to the treatment.
Three appeals did not change Cigna’s decision. As someone who works in healthcare, I knew I had one last option: a third-party external review not related to Cigna. By law, once an external review is conducted, the insurance company MUST comply with their findings. I drafted a letter of medical necessity to accompany my doctor’s paperwork and it was sent to the external review board. Upon review, they determined that my case was medically necessary, and Cigna had to comply.
My proton treatments were supposed to start in early February 2018 but because of this fight with Cigna, they didn’t begin until March 8. While this process dragged on, my cancer only grew.
I finished treatment in mid-April and I’m back to work part-time. I’m still in speech therapy and dealing with side effects from chemotherapy. If I’d had standard radiation, I think I would’ve had a much harder time getting back to work, and I don’t believe my hand would be as strong as it is today.
I want to tell other patients in my position that it may be frustrating, but you can appeal your insurer’s decision multiple times and you have the right to an external appeal. Fighting my denial and receiving proton therapy is what got me on the path back to health.
“Now, when I needed insurance to cover the cost of my cancer treatment, my provider was unwilling to help.”
I live a very full, active life. By day, I’m a regional vice president of sales with a major corporation, but when I’m not working, I’m playing drums with old high school buddies in a band called M&R Rush. I’m known for my wild but precise chops. I’m a founding member – the “M” in M&R Rush – and my signature style is hard-hitting, on stage and off.
When I was diagnosed with prostate cancer, the rock star life took a back seat so I could focus on fighting cancer. Working for a global company, I was grateful for my employer-sponsored insurance plan. I assumed I’d be granted access to whatever care I needed but had no idea what would be in store. Before I decided on a treatment method, I conducted meticulous research online. I learned the difference between proton and photon therapies and even identified a few top proton centers to visit.
Following my search, my wife and I made the trip to Northwestern Medicine to meet the staff and learn even more about proton therapy. It was there that I learned that my insurance would likely not cover the treatment. I couldn’t believe it.
A call to my insurance company confirmed my fears. Instead of speaking to a doctor or a medical professional, a customer service representative told me definitively that my insurance would not cover proton therapy for prostate cancer.
On the drive home from Northwestern, my wife and I discussed the benefits of proton therapy and weighed them against the costs. Did we really want to pull from our retirement savings for this? We’d been married 39 years and have been diligently saving for the day we could finally retire. What was even more shocking to me was that I always paid my premiums without fail. Now, when I needed insurance to cover the cost of my cancer treatment, my provider was unwilling to help.
Without any other options, I took a gamble and signed up for a prostate protocol which gave me a 50/50 shot of being chosen for either proton therapy or traditional radiation. I won the prostate lottery and was chosen at random to receive proton therapy. Six months later, I was feeling great and my prostate-specific antigen level had dropped down to a healthy level, which my doctor had said could take a full year for men recovering from cancer treatment. It was a great sign and meant that I would be able to return to living a normal life.
My experience with prostate cancer has allowed me to educate colleagues, friends, and family members about both the specific type of cancer and also about the benefits of proton therapy. Both my father and grandfather had prostate cancer. Chances are good that my two sons will get it. I want protons to be a choice for them if and when they are diagnosed.
There’s a lot of information about prostate cancer and the different types of treatments that requires careful consideration. It is up to the individual to dig in and analyze the pros and cons in order to make a decision that is right for them. And my hope is that future patients won’t have to rely on a lottery to get coverage.
“If you find yourself in the same position I did, just remember: Keep fighting, and don’t accept no for an answer.”
Keep fighting, and don’t accept no for an answer. That’s what I want to tell anyone fighting for access to doctor-recommended proton therapy. I learned this firsthand through my own battle with my insurance company. My fight began in January 2018, when I found a lump on my right lymph node. It seemed odd, so I went to get it checked out. That’s when the doctors confirmed I had a type of throat cancer, Squamous Cell Carcinoma, with the primary tumor in my right tonsil.
I immediately took matters into my own hands and began researching this cancer and different options for treatment. I found out about proton therapy through my search. Of my options, surgery seemed excessive and chemotherapy wasn’t the right fit. What I read about proton therapy convinced me that it was a great choice. Given the location of my tumor in my right tonsil and right side lymph node, the possibility of proton therapy to precisely target my tumor while avoiding healthy tissues in my head and neck really stood out. My mind was made up.
I went to the Mayo Clinic in Rochester, Minnesota, and was relieved when my doctor confirmed my thinking. During this visit, I learned much more about the benefits of proton therapy over traditional radiation for head and neck cancers of the type I had.
I traveled to Rochester because none of the hospitals near me offered proton radiation treatment. That meant my treatment was out of network, and worse, my insurance company, Quartz, denied my initial request for proton therapy. They claimed my doctor-recommended treatment was experimental. My doctor disagreed and sent a letter to the provider, explaining that their position was outdated and that proton therapy is now standard treatment for head and neck cancers. The letter wasn’t enough.
Quartz required us to meet with a nine-member appeals board. My doctor and I would only have twenty minutes to present our case and convince this board to reverse the insurer’s initial denial. My doctor explained that the insurance company was using outdated information from 2014 that had since been updated. We stressed to the board members that proton therapy is FDA-cleared and covered by Medicare as an effective cancer treatment.
I’m so glad we put up this fight because ultimately, the insurance company relented. Three days later, Quartz informed us it was reversing its denial. My treatment would be covered in full. I was elated! This whole ordeal took about three weeks, delaying my treatment and giving me additional anxiety about my situation. My doctor at Mayo said only about five percent of patients receiving radiation get proton therapy. This is tragic – especially if it’s the result of an insurance company’s improper denial, as was my case.
Now that my insurance battle is won, I can finally begin my proton treatments. I couldn’t be more pleased with our efforts and the insurance company’s change of heart. If you find yourself in the same position I did, just remember: Keep fighting, and don’t accept no for an answer.
Cancer: Esophageal Cancer
Submitted by: Karen Seibert
Karen and Larry Seibert
“I promised my husband that I’d continue his fight and I’d never stop until insurers are held accountable.”
Until my husband Larry was first diagnosed with esophageal cancer in 2013, he had never been sick a day in his life. He was a concert bassoonist and music was his life’s passion. I’d joke that if that instrument was a woman, I would have been jealous.
For three years following his first diagnosis, Larry was the picture of health. He was cancer-free following six weeks of radiation and chemotherapy. But in 2016, a routine check-up found that his cancer had returned in his esophagus, a lymph node, and left lung. We were in disbelief.
Larry and I were dismayed by the thought of being back on an emotional roller coaster of fear and dread. Larry’s doctor was adamant that he should have an esophagectomy and surgery to remove the lower left lobe of his lung. We had fought the surgery during the first go-round because it would end his ability to play the bassoon but now, we found ourselves face to face with our worst fears.
The esophagectomy would have resulted in the removal of Larry’s entire esophagus and the upper part of his stomach. That would mean an extensive recovery. Not to mention that the very operation the doctor claimed could save his life would virtually eliminate the music for which his heart beat.
The weekend after the diagnosis, a friend mentioned that his father had a Barrett’s esophagus and visited a doctor in Knoxville, Tennessee who made all the difference. We both thought this might make a difference for Larry, too, and decided to make the trip.
We found out during our visit to Provision Healthcare Proton Therapy Center that Larry was a candidate for proton therapy. The treatment would precisely target the bulk of its cancer-fighting proton energy on the cancerous cells while sparing Larry’s breathing capacity and avoiding the need for surgery. We were sold the minute his doctors said Larry would be back playing the bassoon in no time.
The Provision staff warned us that insurance companies often deny the treatment, but we were assured that fighting insurers for a patient’s access to proton therapy was nothing new. Plus, it was a no-brainer: proton therapy was both cheaper than an esophagectomy and was in Larry’s best interest. Unfortunately, that didn’t matter to our insurer Cigna.
Thus began a fight that would last six months and would take an unimaginable toll on Larry’s life. The denials from Cigna just kept coming. Our doctors did everything they could but our insurer had other plans. The Cigna representatives who reviewed the appeal didn’t specialize in Larry’s cancer and were not knowledgeable about proton therapy. In fact, the second person from Cigna to review – and again deny – Larry’s appeal was a gynecologist.
During one of our visits to Provision, they suggested that we call our state department of insurance and file a complaint against the insurance company as well as call or write our members of Congress and anyone else we could think of that might be able to help our cause. I made it my mission to contact everyone I could. I filed a complaint with the Department of Insurance, as suggested, and crafted a letter to every senator and member of Congress in Ohio as well as the vice president of the United States.
I did not think anyone would read my letter, let alone do anything to help, but I had to try. Three days after sending the letters, I received a phone call from Senator Sherrod Brown’s office.
The staff in his office asked that we follow up after the Department of Insurance reviewed the claim. So we waited. Finally, the department decided that Cigna had done nothing wrong but told us that they understood our plight. That’s when Senator Brown’s office said they would continue to fight for us and wouldn’t let Cigna off the hook.
Following three more denials and many frustrating conversations, we were down to the second and final external appeal. Finally, on August 10, 2016, we won our fight against Cigna; Larry was approved to receive proton therapy.
Winning this fight was bittersweet. It took so long to get the approval that, in the interim, Larry’s cancer had metastasized to his bones. It was a hard pill to swallow, especially when Larry’s oncologist said that his cancer may not have spread had his treatment not been delayed. Larry was a fighter and we began proton therapy as soon as we could, but it was too late. Larry lost his fight when the cancer spread to his brain. He died on January 28, 2017.
I promised my husband that I’d continue his fight and I’d never stop until insurers are held accountable. When you love someone as I loved my Larry, you are willing to fight to the ends of the earth, and that’s what I’m prepared to do.
Location: Bloomington, IL
“For me, proton therapy meant that I wouldn’t have to give up on my passion and would avoid many of the side effects that are common with traditional radiation.”
Singing is one of my greatest passions.
As the lead singer of The Classics IV, I perform regularly, singing such hits as “Stormy,” “Spooky,” and “Traces (of Love)” to audiences around the world. Since joining the band in 2007, I have traveled from Las Vegas to the Philippines and many place along the way. Most recently, I performed in Lakewood, New Jersey, keeping the legacy of our of ’60s pop group alive.
But in March 2016, I was diagnosed with throat cancer. A tumor threatened to rob me of my gift and profession. The thought of this possibility terrified me. I’ve been a singer my entire life and to have that pulled out from underneath me was something that I wasn’t prepared to face.
Initially, doctors recommended that I undergo surgery, followed by traditional radiation and potentially chemotherapy to treat my tumor. The surgery along with traditional radiation would have left me battling a lifetime of side effects—including a severe speech impediment—that could have ended my career. When the gravity of this diagnosis and treatment fully registered with me, I immediately began looking for another option.
That’s when a Google search led me to Northwestern Medicine to learn about proton therapy. Unlike standard radiation that uses photons, proton therapy allows physicians to precisely target the bulk of its cancer-fighting proton energy on the cancerous cells, minimizing extraneous radiation dose to healthy tissues, preserving organ function, and potentially reducing harmful side effects. For me, proton therapy meant that I wouldn’t have to give up on my passion and would avoid many of the side effects that are common with traditional radiation.
I soon met with the cancer care team at Northwestern and was struck by their positivity. One radiation oncologist, in particular, expressed his belief that my cancer could be beaten and that proton therapy would have me back on stage in no time. This visit sealed the deal for me; I began proton therapy treatment at Northwestern shortly thereafter.
By July 2016, I had received 33 rounds of treatment and was relieved to learn that I was finally cancer free.
Eight weeks after my final proton therapy treatment, I reunited with The Classics IV for a show in Las Vegas. That performance was gut-wrenching. I was there with my bandmates, we’re family. I was able to walk out on the stage, address the audience, and share my story with them. During the show, I took the time to thank my oncologist and the cancer care team at Northwestern, attributing my survival to them.
The Classics IV continues to delight and entertain audiences across the country. Thanks to proton therapy, I was able to return to the stage and perform for fans.
Finding proton therapy was a miracle. I am blessed to be able to now tell my story. This was truly the journey of a lifetime and I’d recommend that anyone at least take a shot and see what proton therapy does for them.
Cancer: Prostate Cancer
“How could it be that BCBS would deny treatment for something Medicare had already approved,” Joe remembered thinking. “Proton therapy is clearly a no-brainer and offers significant advantages over traditional radiation.”
At 76 years old, Joseph Sansbury was focused on enjoying retirement following 36 years as a federal employee. After graduating from The University of Louisville’s Speed Scientific School of Engineering in 1965, he spent his career working as a mechanical engineer at places like Ford Motor Company, Naval Sea Systems Command, and a consulting firm. In his retirement, Joe looked forward to spending time with family, gardening, and traveling.
All of that changed in the fall of 2018.
A routine medical examination found an elevated prostate-specific antigen (PS), which worried Joe’s doctor. After the doctor referred him to a urology specialist, who conducted a series of tests, exams, and a biopsy, the pathology report revealed a Gleason score of 7 (intermediate risk), which meant that the cancer would require treatment. Joe got a second opinion and this time the cancer was determined to be a Gleason score of 9 (aggressive, and high risk). The doctors agreed that he was not be a good candidate for surgery and instead recommended hormone treatments and traditional radiation.
Still curious about different treatment methods, Joe did some independent online research, and discovered proton therapy. It seemed to Joe like a compelling treatment option, but his doctors had never mentioned it.
After reading about the MD Anderson Cancer Center in Houston, Texas and its well-regarded proton treatment center, Joe scheduled a visit. He filled out paperwork, underwent a blood test, and met with the cancer care team. His team agreed that Joe would not be a good candidate for surgery and instead recommended proton therapy along with hormone.
This would only require 39 treatments compared to the 45 traditional radiation treatments that his prior care team originally proposed. Even better, the protons would focus their cancer fighting energy with pinpoint accuracy and focus the radiation on his tumor. Healthy tissues and adjacent organs would only be subject to a minimal level of radiation exposure.
Joe ultimately chose proton therapy with the hormones because of the many advantages it offered.
Nearly eighty percent of Joe’s treatment was covered by Medicare, meaning his supplemental insurance, provided by Blue Cross Blue Shield (BCBS) Federal, would only need to pay the remaining twenty percent. Joe had been paying $400 monthly for supplemental coverage and thought he was covered, but BCBS didn’t agree.
Ahead of his first treatment session, BCBS denied his request for proton therapy. They didn’t see it as “medically necessary.”
Not willing to wait while his aggressive cancer grew, Joe sent MD Anderson an out-of-pocket payment of $8,900 in order schedule his treatment. Simultaneously, he continued to appeal the BCBS denial. His oncologist sent a detailed letter to BCBS explaining why hormone and proton treatments would be the best option for treating Joe’s aggressive form of prostate cancer.
The physician’s letter and the initial appeals were denied. BCBS came back over and over with the same form letter, which read, “[your physician] requested an expedited appeal and for an external medical review with a physician board certified in radiation technology. We have determined that proton therapy is not medically necessary.” They refused to take into account Joe’s unique case, accepted research, and other information supplied by his physician.
“How could it be that BCBS would deny treatment for something Medicare had already approved,” Joe remembered thinking. “Proton therapy is clearly a no-brainer and offers significant advantages over traditional radiation.” The experience and the insurer’s denial left him confused and disappointed.
Joe reached out to his insurance company to ask for further information and clarification about their reasoning. Specifically, he wanted to learn more about the “expert” panel that had reviewed and rejected the request. He was told by a BCBS representative that he wouldn’t be granted access to that information unless it was “subpoenaed” by a lawyer.
While awaiting early morning treatments at MD Anderson, Joe got to know other prostate patients that were also pursuing proton therapy. He calls these other patients his Proton Pals! All of the Proton Pals had Medicare and different supplemental insurance policies but – unlike Joe – none of them had to pay out of pocket for treatment.
Today, Joe has won his battle with cancer but his fight with his health insurance continues. He has paid out of pocket to cover the portion of the treatment not covered by BCBS, which amounted to over $8,900. What was once money Joe saved to enjoy in retirement became a payment to treat a life-threatening cancer—all because BCBS improperly denied his treatment.
State: Ft. Worth, Texas
Cancer: Hodgkin's Lymphoma
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.
Cancer: Prostate Cancer
“No matter how much data or references I provided, it became evident that my insurer was essentially stonewalling. Anthem had made up their mind from the beginning, and no amount of evidence or appeals would change that.”
When I learned that I had prostate cancer, I immediately investigated my options. I conducted a thorough search online and found an informative article entitled, The 10 Myths About Proton Therapy, which led me to contact the MD Anderson Proton Therapy Center.
When I first contacted the MD Anderson Proton Therapy Center, they informed me that there was only about a fifty percent chance that my insurer would cover the cost of the proton therapy. However, after conversations with my doctor, I knew proton therapy was the best medical option to preserve my quality of life. I made the decision to move forward with the proton therapy treatment, even if the insurer refused to reimburse me.
After filling out the insurance application with the help of MD Anderson, Anthem denied my coverage. Their initial response was so slow that it violated my company’s health insurance contract which requires a timely response. Cancer care should not be a waiting game. Even though MD Anderson placed me on hormone ablation therapy, which shrinks the cancer cells and slows their growth, I still worried that the slow growth could compound my medical problems while Anthem deliberately delayed my treatment. While MD Anderson helped me throughout the application and appeals process, Anthem continued to reject my claim deeming proton therapy was “experimental.” Attempts to appeal Anthem’s decision through an independent review board were also rejected on the basis that proton therapy was “experimental.”
No matter how much data or references I provided, it became evident that my insurer was essentially stonewalling. Despite repeated requests, Anthem and my employer would not respond to MD Anderson’s request to discuss the matter or review their comparative treatment costs. Anthem had made up their mind from the beginning, and no amount of evidence or appeals would change that.
My appeals process dragged out for six months and impacted my treatment schedule and treatment options. All the while, I was concerned that my cancer might slowly spread outside my prostate gland, even though my cancer’s growth was slowed down by hormone ablation treatment. Finally, I decided that I couldn’t wait any longer and began treatment.
Proton therapy saved my life, and I’m glad that I pursued this form of treatment. However, I had to pay $90,000 out of pocket for it. While my treatment was a financial setback, it was well worth it.
For other patients struggling for access to proton therapy, remember not to give up. No matter the amount of pushback from insurers, it’s crucial that patients fight for coverage until all their options are exhausted. No cancer patient should have to deal with insurers’ games. Fighting cancer is already hard enough.
Cancer: HPV Oropharyngeal Cancer
“On July 27, I received 27 envelopes from Blue Cross Blue Shield, stating that my proton therapy claims had been paid in error, and demanded that the funds be returned.”
At first, I thought I had strep throat, but when antibiotics failed to subdue a lump in my neck, my doctor called for a biopsy. The next several weeks were a whirlwind of tests, results, consultations, and research. I had HPV oropharyngeal cancer.
A CAT scan revealed my cancer had originated in my right tonsil and affected three lymph nodes. I was told by experts that surgery would not be the best first option. Radiotherapy was prescribed, which would be enough to destroy my cancer, but would also expose surrounding healthy tissues and organs to radiation with life-altering side effects and complications. My dentist then suggested that I inquire about proton therapy.
I was told I was a perfect candidate for proton therapy by an expert physician and medical team at one of our nation’s leading cancer centers. At the same time, I was also warned that my insurer, Blue Cross Blue Shield (BCBS), would likely not authorize the procedure initially, but that the cancer center had a whole team of people who would initiate appeals on my behalf.
As predicted, a denial came from my insurer, and we fought through three rounds of appeals. After the second appeal, we were told that if we planned to appeal a third time, that their “intent is to deny,” indicating an unwillingness even to consider the individual facts of my case, and just rubber-stamping the denial. Despite my appeals being marked urgent – requiring a 72-hour response – BCBS failed to meet the deadline on at least two occasions, according to my care team. When an independent review panel also denied proton treatment, I felt defeated. My only options were to select traditional radiation therapy or find a way to cover my proton therapy treatment out-of-pocket. The denial process also delayed treatment by several weeks.
Running out of time and options, we sent a down payment to the provider so I could start proton therapy while continuing to fight for coverage. I also turned to my State Representative who submitted a “legislative inquiry” to the Texas Department of Insurance to ask about the prolonged response times on the denials from BCBS.
A few weeks after this inquiry was submitted, I was informed that the Enforcement Division at the Texas Department of Insurance was getting involved. Shortly after that, payments began to come in from BCBS, and within the next few months, it appeared that 27 out of the 33 treatment claims had been paid. At the same time, they were still sending out correspondence on the remaining six claims stating that they were not “medically necessary.” I was receiving paid claims one day, denials the next day; these mixed messages from my insurer left me confused about their policy.
On July 27, 2018, I received 27 envelopes from BCBS, stating that these claims had been paid in error, and demanded that the funds be returned. Otherwise, according to the letter, BCBS would be forced to withhold this amount from any future benefits to MD Anderson Cancer Center.
Utilizing everything we have at our disposal, my cancer center and I will continue to pursue authorization for payment from BCBS for treatment. Proton therapy was effective, resulting in a clean PET scan, with no follow-up surgery required. But despite my now being cancer-free, BCBS stands by their decision to deny reimbursement for my proton therapy.
My treatment was really tough, and I have had multiple professionals on my care team indicate that my complications and side effects would have been far worse had I been forced to receive conventional radiation.
I am incredibly fortunate and grateful that a treatment was available for my condition that offered fewer side effects and complications PLUS a successful outcome, but you should not have to resort to going into enormous debt to receive the treatment that you and your doctor agree on. Having health insurance should be enough.
Cancer: Lung Cancer
“It’s preposterous that patients like me are expected to battle our cancer and our insurer in order to survive. I know that there are other stories like mine that need to be told, which is why I am urging others to become advocates for proton therapy in order to ensure that nobody faces an unfair insurance denial in the future.”
The course of my life changed drastically when I was diagnosed with Stage 3A Adenocarcinoma Lung Cancer in March of 2014. After my diagnosis, my oncologist informed me that my severe emphysema meant that I was unable to have surgery or radiation.
Within a week or two of researching other treatment options, I discovered proton therapy as a potentially life-saving treatment option and was committed to learning more. After the Radiation Oncologist examined my PET and CT scans, she said that the location of the tumor on the right edge of my right lung meant that I was a good candidate for proton therapy, and I was elated.
As an employee of the Federal Government, I thought that I had good insurance – I was certainly paying for it! – but I quickly learned that was not the case. After loyally paying premiums for 27 years, I had assumed that my insurer would be there to pay for my treatments, but my coverage was denied. Shocked, I appealed to my insurer a total of three times but was denied each time. My frustration grew as I repeatedly waited weeks for my appeal to process, only to be denied access to the treatment that I so desperately needed. I couldn’t waste any more time, so I decided to self-pay for proton therapy treatment.
Despite initially being told that I only had 18 months to live, here I am – more than 4 years later! Proton therapy has allowed me to not only beat my survival expectancy, but also to thrive.
Though I am extremely thankful for the care that I have received from my wonderful team of doctors and nurses, I can’t help but be disappointed with my insurer’s refusal to pay for lifesaving treatment. It’s preposterous that patients like me are expected to battle our cancer and our insurer in order to survive. I know that there are other stories like mine that need to be told, which is why I am urging others to become advocates for proton therapy in order to ensure that nobody faces an unfair insurance denial in the future.
Cancer: Prostate Cancer
“Currently, I am in watch and wait mode much to the dismay of my wife and family. Unfortunately, paying for proton therapy out of-pocket would impose an enormous financial burden on my family that we cannot bear.”
As the owner of a family business, I’ve spent decades working to build the highest quality products and provide superior service to my customers. Unfortunately, when I was diagnosed with prostate cancer in early 2017, I was shocked to discover that my insurance company doesn’t share the same values.
After my diagnosis, I was determined to treat my cancer head on. When my doctors recommended radical removal of my prostate, I wasn’t completely on board with that approach. Then I was recommended for proton therapy and became convinced it was the right treatment for me. Compared to traditional radiation, proton therapy carried a much lower risk of urinary and sexual side effects over the long-term.
I called my insurer and was told my proton therapy would be highly considered for approval if the hospital could prove this was the best treatment plan. Since some of the best doctors in the country prescribed it, I felt confident that my insurance company would pay for it.
I was horrified when my insurer started denying my claims. After 3 denials and countless hours spent worrying about my health, my case went in front of the Insurance Review Board of the state of Michigan. I hired an attorney to help me but was ultimately told that proton therapy was deemed to be medically unnecessary and experimental.
Currently, I am in watch and wait mode much to the dismay of my wife and family. I am having quarterly blood tests drawn to verify if the cancer has become aggressive or is still at bay. I have decided that radical removal is simply not an option. Unfortunately, paying for proton therapy out of-pocket would impose an enormous financial burden on my family that we cannot bear.
This just isn’t right. It’s time for insurance companies to do their job and pay for the cancer treatments their customers need.
Cancer: Breast Cancer
“I found myself in the fight of my life after I was diagnosed with breast cancer at the age of 22. Unlike most people my age, I was suddenly forced to grapple with a life-threatening disease, as well as a callous insurance company that has denied payment for my doctor recommended treatment.”
I found myself in the fight of my life after I was diagnosed with breast cancer at the age of 22. Unlike most people my age, I was suddenly forced to grapple with a life-threatening disease, as well as a callous insurance company that has denied payment for my doctor recommended treatment.
With a lot of hope for the future, I started chemotherapy and underwent a mastectomy in January 2018. But when the results of a routine genetic test came back, I found out that I am highly predisposed to secondary cancers due to a genetic condition. My doctors told me that proton therapy was considered the best option because it would significantly reduce the risk of a secondary cancer. While I was a little unsure about receiving radiation initially, I decided to pursue it after learning how proton therapy would be beneficial in preventing a recurrence.
To my shock, my insurance company had other plans. They denied my claim for proton therapy based on outdated 2012 clinical guidelines, which have since been updated to recommend proton therapy for breast cancer patients like me with other co-morbidities.
Following my denial, a peer-to-peer review between the insurer and my physician took place to discuss the claim. However, it was clear that the insurer’s representative was not qualified to review my case. In fact, he wasn’t even a radiation oncologist! Even more upsetting, we soon learned the insurer representative denying payment may be the owner of several “cost-containment” companies. It is so frustrating to only be viewed as a dollar sign instead of a person!
I have since started treatment at California Protons while we continue to fight for approval. Proton therapy can significantly reduce the risk of a secondary cancer for me, so why isn’t my doctor’s order enough to convince my insurer?
I am in sharing my story to shine a light on unfair denials insurers are using to block patient access to doctor recommended treatments.
Submitted by: Susan Smith
Susan and Lesley Smith
“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.
Diagnosis: Breast Cancer
“I am fighting for my life and can’t believe BCBS is fighting against me! I am not backing down, which is why I have taken my story to the local media. But no patient should have to fight for their care and endure this level of stress in addition to their cancer.”
After finding a lump in my breast, my worst fear was a cancer diagnosis. When my fears were confirmed, I was stressed and afraid. But my family and I were committed to beating my cancer- and we expected support from my insurance company, Blue Cross Blue Shield of Oklahoma.
Instead of support, however, BCBSOK refused to pay for my proton therapy treatment.
During treatment, my radiation oncologist, recommended proton therapy to precisely target my tumors. Proton therapy allows patients, like me, to receive higher, more effective doses of radiation without damaging surrounding healthy tissue and organs. With cancer in my left breast, my physician and I want to do everything we can to protect my heart and lung. As a young mother of two, I don’t just want to beat this cancer- I want to live a long healthy life after!
I couldn’t believe it when the first denial letter came in from BCBS and still can’t understand how two more denials have been issued, claiming proton therapy isn’t medically necessary. Instead, my insurer suggested 3-dimensional conformal radiation therapy, something MY OWN DOCTOR refuses to do given that this treatment option would deliver almost ten times as much radiation to my heart as proton therapy would.
I am fighting for my life and can’t believe BCBS is fighting against me! I am not backing down, which is why I have taken my story to the local media. But no patient should have to fight for their care and endure this level of stress in addition to their cancer.
“The successful treatment of my cancer through proton therapy means that I am living proof that proton therapy is a legitimate, safe and effective cancer treatment – and one that insurers should cover if they truly care about the wellbeing of the people they insure. ”
After being treated for Sarcoma Cancer in 2015, I was in remission for two and a half years, and I was elated to be cancer free. Unfortunately in January 2018, my elation gave way to the familiar feelings of anxiety and sadness when I discovered a lump in the previously-treated area. After rounds of tests and biopsies, I was diagnosed with a recurrence of sarcoma cancer in March 2018.
After speaking with my oncology surgeon and radiation oncologist, it became clear to me that proton therapy would be the ideal course of treatment for my cancer. Learning about proton therapy through the descriptions of my healthcare team made it clear to me that the way in which proton therapy would target the tumor without harming vital organs in the area made it the most appropriate method of treatment in my case.
While speaking with my healthcare team, I learned that this treatment is often not covered by insurers – even though it is FDA-cleared – but I was reassured when the radiation oncologist told me that his team would work with the insurance company to get the treatment approved. As expected, I received several rejection letters from my insurance company. I continued receiving rejection notifications even though I had made the choice to begin my first week of the treatment in hopes that the denial would be overturned. My anxiety continued to build as I questioned how I would be able to cover such an expensive treatment if my gamble didn’t work out.
Thankfully the coverage for my proton therapy treatment was eventually approved by my insurance company, but it was only approved because my healthcare team actively advocated on my behalf in negotiations with the insurance company. I consider myself truly lucky to have worked with healthcare professionals clearly committed to putting their patients first in an environment where insurers repeatedly prioritize their own interests over those of the patients they claim to be assisting. Not all patients are as lucky as I have been, and I can’t imagine having to battle cancer andmy insurance company all on my own.
Insurance coverage and the financial burden of the physician-recommended course of treatment should be the last thing on the minds of cancer patients when determining the most appropriate treatment for their case. Patients should be allowed to prioritize their road to recovery ahead of negotiating with the insurer they already paid to cover their care.
The successful treatment of my cancer through proton therapy means that I am living proof that proton therapy is a legitimate, safe and effective cancer treatment – and one that insurers should cover if they truly care about the wellbeing of the people they insure. If you believe, as I do, that insurers should make it easier – not harder – to access lifesaving cancer treatments like proton therapy, then I encourage you to join me in advocating for policies that provide fairer, faster, and more transparent coverage decisions. Fighting cancer is hard enough on its own, and patients shouldn’t be expected to fight their insurance company as well.
Cancer: Astrocytoma (brain cancer)
“This broken insurance approval process is just cruel for people during the most vulnerable time in their lives. The stress and anxiety that came from navigating this process was an unnecessary burden when I was already dealing with so much.”
Last year, I had what seemed like a bad head cold that just wouldn’t go away. When my ear, nose and throat doctor ordered a head scan, I was stunned to learn I had a baseball-sized tumor in my brain.
I immediately met with a neurosurgeon, who scheduled surgery for the same week. While surgery successfully removed the majority of the tumor, my doctors found that the tumor was a a grade 2 astrocytoma and recommended radiation followed by chemotherapy to ensure that we beat this cancer.
As an Oklahoma City native, I was familiar with ProCure Proton Therapy Center and I had heard from neighbors about the targeted proton radiation treatment they provide. I decided to meet with an oncologist at ProCure to determine if proton therapy would be my best option. Given my age and the location of my tumor, he confirmed that I was a great candidate for proton therapy.
Shockingly, my insurer disagreed and denied my doctor’s request. I quickly learned that my situation was part of a larger trend of inappropriate delays and denials for proton therapy – but I was not going to give up so easily.
To avoid a delay in treatment, I committed to a personal payment plan while I began the appeals process. Like so many other cancer patients, I was forced to choose between this financial risk or significant risks to my health.
After two denials, I hired an attorney to help fight back. I don’t know if that was the magic bullet or not, but shortly after I involved a lawyer, my third appeal overturned the denial.
I’m still undergoing my chemotherapy treatment, but I am so grateful that this insurance ordeal is behind me. While I’m thankful for the outcome, this broken insurance approval process is just cruel for people during the most vulnerable time in their lives. The stress and anxiety that came from navigating this process was an unnecessary burden when I was already dealing with so much. Cancer patients shouldn’t have to put up with this – its’ time to fix this broken system once and for all.
Cancer: Anaplastic astrocytoma
“Despite the fact that proton therapy seems unattainable because of my insurer, my oncologist told us he wouldn’t recommend traditional radiation therapy because proton therapy truly is my best shot at a long, healthy life.”
Shortly after my daughter Roxanne was born, I suffered from several bouts of feeling confused and disoriented. What I thought were anxiety attacks turned out to be the worst news possible: Anaplastic astrocytoma, a type of aggressive brain cancer.
Because the tumor was growing quickly and caused me to have absence seizures, I needed immediate treatment. After meeting with multiple physicians, it was clear that I would need multiple surgeries followed by proton therapy treatment.
Multiple doctors told me that proton therapy was my best option because it can reduce the neurocognitive side effects and ensure that the healthy tissue in my brain is not damaged by the radiation.
To my surprise and horror, United Healthcare denied my coverage. We moved quickly to appeal the decision – three times – and they rejected each one.
My wife and I returned to my doctor, hoping that he could recommend a different treatment approach that could work. Despite the fact that proton therapy seems unattainable because of my insurer, my oncologist told us he wouldn’t recommend traditional radiation therapy because proton therapy truly is my best shot at a long, healthy life.
My wife and I take great pride in being fiscally responsible individuals, but the price we would have to pay out of pocket for treatment is too much for us to handle. Out of desperation, we have launched a Go Fund Me page with the hope of raising the funds needed.
As I look at my 10-month old daughter, I can’t imagine accepting any treatment that could jeopardize my ability to be there for her as she grows up. Fighting brain cancer has been hard enough – I should not be fighting my insurer as well.
Cancer: Adenoid Cystic Carcinoma
Stephanie Wurdock Lindsey
“I hope my story will help inspire other patients facing the same unfair barriers to care I faced to keep fighting for proton therapy. No cancer patient should be denied the care they have paid for and rightly deserve.”
As a four-time Super Lawyers “Rising Star,” I’m used to pleading a case and making an argument on behalf of my clients. But when my doctor told me I had Adenoid Cystic Carcinoma last year, and my insurer subsequently denied payment for the proton therapy my doctor recommended, I was speechless.
Following surgery to remove the lump in my neck, my doctor said proton therapy was the best course of care. According to my medical team, proton therapy would protect the vital structures surrounding the tumor from radiation exposure while giving me a better chance for a long, healthy life.
I couldn’t believe it when Anthem Blue Cross Blue Shield of Kentucky denied my coverage three times, calling it “experimental” despite the wealth of evidence that it works! Even though their internal radiation oncologist agreed with my doctors that I would benefit from proton therapy, I was forced to appeal to an Independent External Review agency.
If the Independent External Review ruled against me, I would have no choice but to undergo the traditional radiation that I feared. I wrote a passionate plea for the services. My doctors submitted a letter, my records, and medical literature. Within 72 hours, we had our answer: THE PREVIOUS DENIAL IS HEREBY OVERTURNED.
Six days later I was on my way to undergo proton therapy treatment! I am so proud of this victory, not just because of what it means for me personally, but because maybe – just MAYBE– this will help improve access for other cancer patients who are in need of proton therapy treatment.
I recently completed six weeks of proton therapy treatments and am recovering well at home. My treatment was uneventful and my side effects are mild compared to what they could have been with traditional radiation. I hope my story will help inspire other patients facing the same unfair barriers to care I faced to keep fighting for proton therapy. No cancer patient should be denied the care they have paid for and rightly deserve.
Cancer: Grade 3 Oligodendroglioma
“We need to stand up and hold insurers accountable for ignoring qualified physicians’ advice and blocking patient access to cancer care. This isn’t over for me. ”
I would say that I have lived a privileged life – I was raised by a caring family, I was fortunate enough to have been given all the tools I needed to thrive and flourish into the person I am today, and I have grown up with near perfect health.
Unfortunately, one unlucky abnormality in my body has thrown all of these favorable fortunes into disarray. Late last year, I was diagnosed with a grade 3 Oligodendroglioma, a type of malignant brain tumor.
Thanks to my excellent team of doctors, I quickly underwent surgery to have the majority of the tumor removed. However, due to the infiltrating nature of these types of tumors, radiation and chemotherapy are a necessary follow-up protocol.
My doctors recommended that I receive proton beam radiation therapy because it would target the bad tumor cells and decrease the amount of excess radiation affecting the rest of my good brain cells – reducing my risks of developing future complications and ensuring a higher quality of life. It would also significantly decrease the chances of my cancer recurring.
But my insurer, Premera Blue Cross, had other ideas. They denied my treatment on the grounds that it wasn’t ‘medically necessary.’ That is, it didn’t meet their internal policy criteria despite the fact that a team of oncologists – some of the best in the world – all agreed that proton therapy would the best type of treatment for me.
Despite this devastating set back, I was not ready to give up. My wife and I are planning to start a family and I am not prepared to accept a lesser treatment that doesn’t give me the best chance for a long, healthy life.
With the help of my doctors, to whom I am incredibly grateful, I appealed the denial multiple times. Apparently, the expert opinions of my oncologists, who know my case better than anyone else, matter less than my insurer’s vague and arbitrary coverage guidelines and ‘independent experts’.
Fortunately, after my story aired on our local news station, Premera finally approved my proton therapy treatment! I am grateful I got approved, but it should not take me going public with my story to get to this point.
This experience has opened my eyes to the challenges patients needing proton therapy face on a daily basis. There must be a fair and timely process for determining coverage that is based on personalized clinical expertise rather than arbitrary guidelines. We need to stand up and hold insurers accountable for ignoring qualified physicians’ advice and blocking patient access to cancer care.
Diagnosis: Breast Cancer
“How can a safe, life-saving procedure that is prescribed by your doctor be denied by insurance companies? We know damage is being done to patients and families who wait for necessary proton therapy treatment and I am prepared to advocate for patients to receive treatment when ordered by their medical team!”
After my breast cancer came out of remission in April 2017, my doctors recommended getting a second opinion because surgery, chemotherapy, and traditional radiation treatments were found to be ineffective. In search of options, my husband, Rick, made an appointment to see if I would be a good candidate for proton therapy and we met with a team of doctors who highly recommended proton therapy to attack the aggressive cancer in a safe and beneficial way. Though I had never heard or been offered proton therapy before, this gave me such hope and the understanding that I would thrive with this treatment!
My renewed sense of hope was short-lived when my insurance company refused to pay for the treatment. I was shocked that my insurance company continued to deny the only form of treatment I had left. Making phone call after phone call for weeks to fight the denial, I felt the “game” begin. I lived in despair and defeat, getting either conflicting, incorrect answers or no answers at all. I remember my husband coming home from work one night and, through tears I said, “They won, I quit.” By that point, I had become emotionally worn down and could not function.
One day in August 2017, I was sitting at home with a mastectomy and no treatment when a life-long friend reached out to me and offered his help. He is an attorney and was just beside himself when we discussed the situation. He was able to reach my insurance company’s top lawyer and, within days, the CEO and top executives of the insurance company were apologizing and asking what I wanted. I started proton therapy September 2017.
I would not have had this outcome if it was not for the intervention of a special life-long friend who is a well-respected attorney. After receiving an immediate response from the insurance company, it became even more evident that insurance companies purposely put unnecessary roadblocks in the way of their clients to deny treatment in order to save money.
As I write this, my emotions are still so strong. I am heartbroken that this has happened for years to others––and that it is still happening. How can a safe, life-saving procedure that is prescribed by your doctor be denied by insurance companies? We know damage is being done to patients and families who wait for necessary proton therapy treatment and I am prepared to advocate for patients to receive treatment when ordered by their medical team!
“It doesn’t take a rocket scientist to see that brain tumor patients and doctors should be launching a fight on cancer, not insurance appeals.”
I have always been in awe of the cosmos; how breathtakingly beautiful and vast our universe appears to be. My interest in astrophysics and engineering led me to my dream job as an aerospace engineer with NASA upon graduating from college. I began working at the Marshall Space Flight center in Huntsville, Alabama designing rocket hardware, assemblies, and systems. After my marriage in 2016, I moved to Houston, Texas with my new wife to work at Johnson Space Center.
I had everything I ever wanted until a seizure last October immediately changed my life. After many tests and surgery, the doctors at MD Anderson Cancer Center confirmed that I had an Oligodendroglioma – a type of brain tumor. At 34 years old, I was uncertain how the diagnosis of this would affect my future with NASA, my relationships with friends, and all my time spent with family.
With the support of my family, I underwent an 11-hour ‘awake craniotomy’ to remove 40 percent of the tumor. My doctor suggested using proton therapy treatment to treat the remaining cancer. I am a strong candidate for proton therapy because it simply causes less damage to brain cells than traditional radiation treatment. Through my research about proton therapy, I knew it would be my best chance of preserving my current level of functioning so I could return to the job I love.
To my astonishment, my lifesaving treatment was denied by Blue Cross Blue Shield’s Federal Employee Program not once, but twice. Payment for my care was denied because of a lack of medical necessity and “insufficient evidence.” To receive proton therapy, I would have to pay approximately $100,000 out-of-pocket. I believed that the insurance company would pay less total in the long run when paying for proton therapy versus paying a lifetime of healthcare claims if my brain cells were damaged from traditional radiation.
While I recuperated from my surgery, my mother and sister contacted the media about my insurance denials, and my doctors at the MD Anderson Proton Therapy Center worked diligently on my appeal. Thanks to their tireless advocacy, Blue Cross Blue Shield reopened my case and approved my treatment.
I’m relieved and thankful that I will finally start to receive the care I need, but I also recognize that I am one of the uncommon ones. I have learned that there are other patients across the country who are going through the same sort of appeal and denial process, and many of them are forced to settle for potentially insufficient types of care. It doesn’t take a rocket scientist to see that brain tumor patients and doctors should be launching a fight on cancer, not insurance appeals.
Cancer: Head & Neck
“My granular cell tumor was located behind my ear where the jaw, carotid artery, esophagus, brain stem, oral cavity—anything that’s important to me and to living a healthy life—are located. Proton beam radiation would target the tumor and not surrounding tissue, and to me was the clear choice. Unfortunately, my insurance company didn’t agree with me or my team of medical experts and denied coverage.”
At 56, I was living an active life as a freelance writer when I was diagnosed with cancer. My three children were in high school and college, and I was getting ready to celebrate the publication of my first book. The book release date, however, was overshadowed by a cancer diagnosis. A month or two earlier, I had noticed a small growth behind my left ear. It was suspected to be a harmless sebaceous cyst, so I didn’t think twice when it was removed. Weeks later, I was shocked when the pathology report indicated a malignant granular cell tumor, a very rare and intensely aggressive form of cancer.
In search of the best treatment available, I traveled from my home in Lafayette, Indiana to seek evaluation by experts at the MD Anderson Cancer Center in Houston, Texas. Due to my tumor’s location in the complicated head and neck region, and the potential side effects of conventional radiation treatment, my medical team suggested proton therapy, which would minimize damage to sensitive areas surrounding the tumor.
Proton beam therapy is very targeted and the right treatment for my head and neck cancer. My granular cell tumor was located behind my ear where the jaw, carotid artery, esophagus, brain stem, oral cavity—anything that’s important to me and to living a healthy life—are located. Proton beam radiation would target the tumor and not surrounding tissue, and to me was the clear choice. Unfortunately, my insurance company didn’t agree with me or my team of medical experts and denied coverage.
Anthem deemed proton therapy “investigational,” even though proton therapy is FDA-cleared, covered by Medicare, and recognized in the National Comprehensive Cancer Network guidelines for head and neck cancers. The insurer also declared proton therapy not medically necessary for my cancer.
Despite the insurance denial, I recognized the importance of treating my aggressive cancer quickly. To begin treatment when it needed to happen—and not wait the months it would take to get a final opinion from my insurer – my husband and I paid out-of-pocket for proton therapy while going through the appeals process with the insurer. I fought the insurance company on nearly a daily basis, the entire length of my treatment. The denial was ultimately overturned in external review the day before treatment ended. The external reviewer considered the medical details (which I’m convinced the insurer never did), deemed the treatment medically necessary, and the insurer was forced to cover my proton treatment.
While the denial did not really come as a surprise to me, because I had heard of poor insurance coverage for proton therapy, what did shock me was my insurer’s seemingly careless and evasive decision process, its complete disregard for federal regulation, and the numerous inexcusable factual errors made in communication during the appeals process. My insurer termed proton therapy a type of X-ray radiation (they are two completely different forms of radiation). The insurer completely misidentified the requested treatment (citing an MRI instead of proton beam radiation) and wrong part of my body (citing the spine instead of the head and neck). The denial letters were also riddled with grammatical errors that completely discredit the professionalism of the company.
The insurer also violated federal regulation, failing to comply with the mandated deadlines of an expedited review process. It delivered responses several weeks after the required 72-hour response window had passed. I was astounded to learn that there are no penalties for this conduct. Insurance companies have no reason to change their behavior, which is something legislators must address.
With proton treatment now behind me, I am grateful that I had the strength to fight for and win coverage of the necessary radiation, despite an insurer that argued otherwise. My own fight for coverage may be over, but I vow to continue to advocate for fair insurance treatment of other cancer patients, none of whom should be fighting anything other than their disease.
Cancer: Stage 3 Esophageal Cancer
“I assumed my insurer would be there to pay for my treatments. After all, what else was I paying my premiums for? But on the day I was supposed to start treatment, I found out that my care wouldn’t be covered.”
I am a retired firefighter who was diagnosed with Stage 3 Esophageal Cancer in 2017. After my diagnosis, my oncologist recommended that I receive treatment right away to stop the cancer from spreading and save my life.
My doctors recommended I receive proton therapy because it would concentrate the radiation to the precise cells that need to be killed without causing damage to nearby organs.
I assumed my insurer would be there to pay for my treatments. After all, what else was I paying my premiums for? But on the day I was supposed to start treatment, I found out that my care wouldn’t be covered. While Medicare approved payment for 80 percent of the treatment, my private insurer refused to pay the remaining 20 percent.
I appealed to my insurer, but they wouldn’t budge. Not wanting to delay treatment, I decided to write a check that day to cover that 20 percent and get started.
A year later, I was cancer free. I am so thankful to my wonderful team of doctors and nurses who took such great care of me and were able to make sure I got the care I needed. I would not have made it through such a difficult time without their support and the support of my family and friends.
I am sure there are many stories similar to mine that need to be told. That’s why I’m urging others to become advocates for proton therapy, so we can make sure no one has to face an unfair insurance denial.
Cancer: Brain & Leukemia
“My insurer – who should be, above all else, interested in my health – would have left me for dead. In short, fighting cancer is hard enough, I shouldn’t have to also fight my health care provider.”
When I first started experiencing headaches and nosebleeds, it never occurred to me that anything serious could be wrong. At age 52, I had never smoked or drank, I had been a college athlete, and I had always lived a healthy lifestyle. But when I began passing out, I knew it was time to investigate.
After many rounds of testing, my doctors delivered a double whammy: I had both leukemia (a cancer of the blood), and a large tumor deep inside my head, growing into my parotid gland.
Because the type of tumor I had was exceedingly rare – affecting about 1 in every 5 million patients – my doctors sent me to see a specialist. There, I learned that I had no time to waste. I urgently needed chemotherapy to treat the leukemia, surgery to remove the large, aggressive tumor, and a follow-up form of radiation to kill any remaining cancer cells left behind.
Although surgeons were able to successfully remove a malignant carcinoma the size of three golf balls from my parotid gland along with 36 lymph nodes – the deep location and size of my tumor made it impossible for doctors to remove all of the affected surrounding tissue into which the cancer had spread. My doctors informed me that my only chance of surviving and maintaining any quality of life, was to quickly receive intensive proton beam radiation therapy. The doctors said that the alternative – traditional radiation– would “melt the side of my face,” likely causing me to lose speech, facial movement and my ability to swallow. It would leave me permanently disabled.
But even with two cancer diagnoses and a huge surgery behind me, it was about to get worse. My insurer – Anthem Healthkeepers (BCBS) – flatly refused to cover the costs of proton beam radiation therapy.
Despite my physicians’ urgent pleas, Anthem maintained that proton treatment is “experimental and investigational” and refused to cover it. During a peer-to-peer review session, an Anthem representative participated only to crassly read a denial paragraph from their policy brochure over and over again. My physicians were appalled by both his attitude and complete lack of appreciation for the urgency of my situation.
With no other option, I went ahead with the proton beam radiation therapy –paying $80,000 up front and out of pocket before treatment began and financing the remaining cost through the help of a payment plan. For nearly eight weeks, I received daily treatments of proton radiation and chemotherapy, which has attenuated the remaining cancer in my head and cured me of the leukemia. I have lost 85 percent of my hearing in one ear and my salivary gland, but thanks to proton therapy I do not have any paralysis. I am able to function and live normally, but had I received traditional therapy, I am confident my side effects would be much more severe resulting in permanently disability and loss of normal function.
The good news is that a neutral third party has reviewed my case and ruled that Anthem was wrong to deny coverage. They are now required to go back and cover the cost for my necessary lifesaving proton radiation. What is scary and unacceptable is that if I had not been able to pay upfront for my treatment and had waited until the appeal process was completed before starting treatment I would NOT have survived the cancer in my head. I would have died.
The grace and generosity of my caregivers during my battle still astounds me, yet, my insurer – who should be, above all else, interested in my health – would have left me for dead. In short, fighting cancer is hard enough, I shouldn’t have to also fight my health care provider.
My experience has emboldened me to stand up for others fighting cancer and hold insurers accountable for ignoring physicians and blocking patients’ access to the best, recommended, cancer care.
Submitted by: Megan Niese
“I strongly believe it should be the insurer’s duty to help facilitate optimal cancer treatment. The most troubling aspect of Brent’s insurance denial experience is that the additional cost of proton therapy treatment was not much more than the traditional radiotherapy the insurance company had approved. The additional cost would have been a drop in the bucket for a large insurance company. That seems like a worthwhile investment considering Brent is a 23-year-old man in the prime of his life.”
At just 23 years old and while enjoying his final year as a mechanical engineer major at The Ohio State University, battling brain cancer was the farthest thing from my brother’s mind. Neither of us could have imaged a cancer diagnosis and a fight with our insurance carrier for life-saving care.
However, on a seemingly normal day of coffee, classes and studying, Brent suffered a seizure in his house near campus. His roommates acted quickly to get him to the emergency room where a series of scans revealed the reason for his seizure – a brain tumor.
As a healthy, active college student, the diagnosis took Brent and our family by complete surprise. But shock quickly turned into action. Brent and his medical team immediately scheduled surgery to remove as much of the tumor as possible.
To say the surgery was a success would be an understatement. Brent had complete tumor resection and no neurological deficits. He was home after two days and back in class the next week. He never missed a beat.
But elation quickly turned to worry when we learned that instead of being a grade one or two tumor as previously predicted, his cancer was rated a grade three tumor, meaning further treatment would be necessary.
Our family immediately began to seek out second opinions and research treatment options, which led us to the Proton Therapy Center at MD Anderson Cancer Center. Upon his initial consultation with a radiation oncologist, Brent learned that he was an excellent candidate for proton therapy due to his age, previous complete resection and general prognosis.
However, a massive barrier presented itself – our health insurer did not agree with his physician’s expert medical opinion. The insurance company flat out refused to cover proton therapy, because they decided traditional radiation would suffice.
This was the insurer’s immediate and unwavering decision, even though a team of doctors agreed Brent would respond well to proton therapy and research demonstrates a lower rate of immediate and long-term side effects associated with proton therapy. This is an extremely important consideration given the anatomical location of Brent’s cancer, as well as his young age.
While we were fighting the insurance company, the small window of time Brent had to begin his next phase of treatment was closing. We had to quickly decide how to proceed based on the insurance denial.
Having appealed and petitioned the insurance denial to no avail, and with no time to waste, we decided proton therapy was the best course of care to ensure an optimal clinical outcome while also protecting Brent’s quality of life for years to come. Thankfully, as my parents were struggling to determine how they would pay for Brent’s proton therapy, the proton center offered an arranged payment plan so that he could immediately start treatment.
I strongly believe it should be the insurer’s duty to help facilitate optimal treatment. The most troubling aspect of Brent’s insurance denial experience is that the additional cost of proton therapy treatment is estimated at merely $10,000 more than the traditional radiotherapy the insurance company approved. While $10,000 is a lot of money to most, it is a very small investment for a large insurer to make in the treatment of a 23-year-old man in the prime of his life.
Brent, my family and I have no plans to give up. Brent has been handed a diagnosis no one his age should have to face. It is inspirational to watch the way he has carried himself as a resilient and determined young man. We will continue fighting the insurance company to cover the cost of proton therapy while Brent continues to fight cancer. This fight is not only for Brent, but for others who are faced with the same barriers, who ultimately may not be able to proceed with proton therapy – a superior form of radiation therapy.
“My family will recover from the financial hardships of paying out of pocket for the therapy, however there are many more patients without the financial means to fund their own care, and who are dependent on their insurer. That is way too much power outside the hands of patients and their medical professionals. No health insurance company should be able to summarily decide a patient’s fate.”
At 60 years old, I was living a very active life. My husband and I had recently become “empty nesters” and I filled my time by running my own business and visiting the gym daily.
However, that all changed when I went to my primary care doctor with some back pain last winter. An MRI revealed something I never expected – stage three lung cancer that had already spread to my sternum. My doctor scheduled me for surgery that same week.
After the surgery, my husband and I decided to meet with multiple oncologists in the area to explore treatment options. When a doctor at Moffitt Cancer Center explained that I only had a 50/50 chance at survival with chemotherapy, I couldn’t accept those odds. I knew there had to be a better option available – I plan on being around for a while! My search for the best possible outcome led me to the MD Anderson Proton Therapy Center in Houston, Texas.
After meeting with MD Anderson Cancer Center, it was clear that proton therapy was my best chance not only for my survival, but also to preserve the best quality of life after cancer. My insurer, however, deemed the treatment “experimental” and refused to cover it. I was shocked.
I have learned that many Americans with cancer are often denied coverage because insurers deem treatment “experimental.” In my case, United Healthcare, an insurer infamous in the cancer community for denying patients need, refused to cover my treatment.
The employer that my husband has been loyal to for decades, took no action to help us despite multiple conference calls with the treatment center and the employer’s global representative for insurance. The entire appeals process became one frustrating ordeal after the next. We appealed United’s decision three times and the first two were handled by a United physician and the third was handled by an oncologist with no experience in proton therapy, was also rejected.
In the end, I had no choice but to go forward with my proton therapy treatment without the financial support of my insurer. Between the expenses of traveling to Houston, renting an apartment for the 5 weeks of treatment, and the care itself, my husband and I spent over $100,000 to save my life.
My family will recover from the financial hardships of paying out of pocket for the therapy, however there are many more patients without the financial means to fund their own care, and who are dependent on their insurer. That is way too much power outside the hands of patients and their medical professionals. No health insurance company should be able to summarily decide a patient’s fate.
“If I had received proton therapy, I am confident I would not be suffering from these side effects and I would have maintained a much higher quality of life during and after treatment. Insured patients should not have to pay the price for insurers who care nothing about a patient’s health and care only about the bottom line.”
I was 58 years old and had retired from my career in law enforcement when I was diagnosed with human papillomavirus (HPV) related oropharyngeal cancer — cancer on my throat. I asked my local ENT doctor about my treatment options and sought out the opinion of cancer experts at MD Anderson Cancer Center in Houston.
After examining my case, doctors at MD Anderson decided I was a good candidate for proton therapy because of the location of my cancer – positioned near my esophagus, thyroid, brain stem and other vital, healthy tissues. Learning about proton therapy, I was optimistic about the clear benefits, including protecting healthy tissues from excessive radiation and maintaining my quality of life during treatment. When I heard from my insurer, my optimism faded.
Although I had two seemingly good health insurance policies – one for my retirement from the police force and one with my new employer, both underwritten by the same company – I was flat out denied proton therapy treatment. I started the process of appealing my insurer’s decision, even winning my first appeal after they denied payment because they defined proton therapy as “experimental.”
But my insurer fought back, this time claiming there was no evidence that proton therapy was a better treatment option than (less-expensive) traditional radiation therapy. I tried going directly to my primary insurer to plead my case – this resulted in a telephone conversation with a nurse representing the insurance company, which was a total waste of time. The nurse confirmed my suspicion: that the insurer wasn’t concerned at all about my health 10-15 years down the road, they only cared about their short-term costs. “Who knew if they would even be my insurer in 10 years?” she said. In other words, my medical needs might be someone else’s problem, not theirs.
I thought, well just maybe my secondary insurance will step up and assist me, but that was also a dead end as my secondary insurance was the underwriter of my primary policy.
Time is not a friend to cancer patients. I was exhausted by the insurance appeal process and felt I had no other choice, so I proceeded with traditional radiotherapy treatments.
Today, my thyroid is shot. I am on thyroid medications and will be for the rest of my life. As a result, my metabolism has declined, I have gained weight and I am tired all the time. And I missed eight weeks of work while undergoing treatment.
While I am nine months cancer free, I still have a huge level of frustration. If I had received proton therapy, I am confident I would not be suffering from these side effects and I would have maintained a much higher quality of life during and after treatment. Insured patients should not have to pay the price for insurers who care nothing about a patient’s health and care only about the bottom line.
“Upon my diagnosis, I had one mission: to fight this cancer with everything I had. Little did I know, not only would I be waging a war on cancer, I would be battling my insurance company in order to access proton therapy and save my own life.”
Melba Fujiura loves barbeque. Not only is she a member of the Pacific Northwest Barbecue Association, which sanctions competitions from Canada to California, she’s also taken classes to become a certified barbecue judge. Even while undergoing proton radiation treatments for lung cancer, she managed to squeeze in time to judge a competition, using her taste buds and expertise to find some of the best barbecue in the region.
“It was a Saturday; I had a proton treatment in the morning, then ran off to judge a competition in Stanwood that afternoon.”
Like good barbecue is a combination of heat, sweet, tang and smoke, Melba’s patient journey has been a combination of hope, fear, determination and support.
The Sunnyside, Washington, resident was first diagnosed with stage one lung cancer in 2015. She was quickly wheeled into surgery at UW Medicine, where they cut out a lobe and hoped they got it all. But a year later, during one of her quarterly checkups, more cancer was found. Again, she was scheduled for surgery, but further tests showed she was not a good candidate for that treatment. Despair set in; was it hopeless?
Her UW Medicine thoracic surgeon, Dr. Michael Mulligan, moved into action. He reviewed her chart, and recommended a consultation with SCCA Proton Therapy Center’s Dr. Ramesh Rengan to see if proton therapy would be a good option.
“He didn’t mess around—he called Dr. Rengan and got us in that very afternoon, and he gave us a lot of hope. It was a blessing he saw us so fast so we didn’t have to spend time worrying unnecessarily.”
For the six weeks of daily proton therapy treatments, Melba bunked at UW Medicine’s low cost patient housing, and took UW’s free bus to her concurrent chemo treatments. A parade of supporters took turns driving her to the proton therapy center in north Seattle for her quick daily radiation treatments.
How is she doing today? “I feel great now. They are thinking the cancer is all gone, and so far, it looks good. And I had few side effects; the chemo caused neuralgia and hair loss, but the only side effect from the proton therapy was some fatigue.“
Regarding her experience at the proton center, Melba has only positive things to say: “I couldn’t have asked for better treatment, you could tell they really cared. If you go to a doctor, it’s really disheartening if they don’t care, or if they act like you’re just another number. But at the proton therapy center, they were kind, got to know my whole family, and made the treatments a breeze. It took longer to change my clothes than to get the treatments!”
Unfortunately, Melba’s insurance outright denied paying for her physician recommended proton therapy. Luckily, her care team was able to make arrangements so she could receive treatment as her survival, health and well-being were the most important factors in choosing proton therapy. So while her cancer battle is over, Melba and her proton center are still wrestling with her insurance company over payment.
However, Melba has zero regrets about choosing proton therapy. “I had a friend who was diagnosed with cancer about the same time, and he went with traditional radiation. He had many more side effects than I did. I feel very lucky that Dr. Mulligan recommended proton therapy to me.”
She’s back to barbecue judging, looking for that perfect combination of tastes that spell satisfaction, and is glad she found the combination of treatments that spell health.
Age: 44 (at diagnosis)
Cancer: Adenoid Cystic Carcinoma (ACC)
“Under the expert care of my physicians— and thanks to our employers’ self-funded insurance policy — I began proton treatment without delay. Miraculously, today I am cancer free. Proton therapy killed a cancer that should have killed me.”
Survivor. That is how Cathleen McBurney describes herself. Thanks to access to proton beam radiation therapy for her cancer, Cathleen is a hard-working and passionate advocate for cancer patients.
Cathleen endured a 10-year misdiagnosis of severe temporomandibular disorder, commonly referred to as TMJ, and “a pinched nerve,” for pain and numbness she experienced in her jaw and the [right] side of her face. She was repeatedly brushed off by her primary care physicians, which led to increased frustration and no remedy for her pain. She resigned herself to living with the pain, accepting her new normal.
In April 2013, on her mom’s 70th birthday, she experienced severe pain that felt as if she were being stabbed in her face and jaw repeatedly. She knew at that moment that this wasn’t simply TMJ or a pinched nerve. At that moment she decided to be her own advocate and immediately sought the help of a neurologist. A simple test revealed obvious nerve damage, and it was through an MRI that Cathleen’s tumor was discovered. Her physician ordered a biopsy of the tumor, which revealed Cathleen had Stage IV Adenoid Cystic Carcinoma (ACC), an extremely rare Head and Neck cancer that affects approximately only 1,600 people in the US each year.
Cathleen had a slow growing tumor approximately the size of a large plum in her maxillary sinus cavity, which was the cause of the pain she had been experiencing for a decade. The tumor was blocking her jaw movement and had invaded her trigeminal nerve, the source of the nerve damage and numbness.
Due to her tumor’s size and internally invasive nature, Cathleen was told her tumor was inoperable. Surgery would have completely destroyed her entire facial and nerve structure. On top of that, she and her family learned that traditional chemotherapy and radiation had proven unsuccessful in treating advanced ACC, leaving Cathleen wondering if she had any hope of survival at all.
Her primary oncologist, Dr. Ehab Hanna [at MD Anderson Cancer Center] introduced Cathleen and her family to proton beam radiation therapy, a treatment option that had had some limited success with her type of ACC. The number of cases could be counted on two hands. Knowing this was her only option for beating cancer, Cathleen and her family immediately concurred and met with Dr. Steven Frank at the Proton Therapy Center that same day.
Cathleen’s treatment team was hopeful that proton therapy would offer her a treatment option that would decrease the tumor size, relieve her pain and improve her jaw mobility – essentially treating her ACC like a chronic condition, for as long as she might live. Based on other ACC cases, this would have been considered a success. However, Cathleen and her family, along with her impassioned radiation oncologist, still hoped for more, a cure.
During treatment, Cathleen did experience pain in her mouth and was unable to eat for several months during and after treatment. She was, however, able to tolerate water and nutritional drinks with a lidocaine swish, so she lost very little weight (approximately 10 lbs.). She never had to use a feeding tube, and about 75 percent of her taste buds are fully functional. While she did lose her sense of smell, she says it is of little consequence to what she gained – her life.
Overall, Cathleen has no visible evidence of cancer treatment at all. While doctors warned she may lose sight in her right eye – the tumor was sitting on the optic nerve – she maintains 20/20 vision today. When she lost her hearing, they said it wouldn’t come back. It did and she has no hearing issues today. The long term side effects of proton therapy for Cathleen have proven minimal in comparison to the lasting effects of traditional radiation.
Unlike patients who receive traditional radiotherapy, Cathleen did not experience many of the common side effects associated with other forms of radiation therapy in Head/Neck patients including problems swallowing, severe dry mouth, visible scarring and permanent hearing damage. Following treatment, Cathleen only requires a single medication for facial nerve pain that she experienced prior to her proton therapy treatment.
Cathleen is confident that her long term medical expenses will be small in comparison, because of the minimal side effects associated with the proton therapy treatment she received, which she points out is something insurers should recognize and consider when evaluating coverage.
Cathleen was very fortunate that her husband’s self-covered insurance plan carried the cost of her proton treatment, meaning she faced no barriers or delays in care, unlike so many cancer patients. Not all patients in need of proton therapy are as blessed. Cathleen believes that access to care and lack of awareness are some of the biggest burdens facing the proton community and cancer patients. She hopes her story can help change that.
Throughout her cancer journey, her family and her faith help her stay strong. Cathleen battled cancer once again, after a metastasis to her liver this past summer. However, she now shows no evidence of disease in either cancer site. Today, Cathleen is a proton advocate, a volunteer, a writer (cathleenmcburney.blogspot.com), a speaker, a wife, and most importantly a mother. And, thanks to her faith and proton therapy, she is a survivor.
“My cancer journey was relatively smooth compared to the battles others endure, when denied the best available treatment by the very people they trust to ensure access to healthcare – their insurer. It shouldn’t be that way. For each man I have counseled concerning prostate cancer, my unequivocal recommendation is ‘proton therapy treatment.’”
As my wife and I were preparing to go on a cruise to celebrate our 40th wedding anniversary, I was experiencing severe leg pain. Knowing there would be a lot of walking on the cruise excursions; I scheduled an appointment with our family practitioner to see if I could get some relief in order to fully enjoy our much-anticipated vacation.
After the cruise, the family practitioner called and asked me to come to his office as some of the blood work was a little suspicious. “Oh, no, this will not be good news,” I thought. My PSA levels had come back high, so he recommended I see a urologist for a consultation. Following the biopsy, the urologist promptly recommended surgery. I had prostate cancer.
Surgery was scheduled. When the urologist mentioned several possible side effects, explaining how each could be corrected, my thought leaving was, “He already has the next three surgeries lined up!” Skepticism mandated researching all options.
A friend of mine suggested reading a blog that his boss had written about proton therapy. In reading about the treatment, it seemed, I might be a good candidate. (I wasn’t too keen on going the surgical route, anyway.) A book titled, “You Can Beat Prostate Cancer and You Don’t Need Surgery to Do It” by Robert J. Marckini, gave a very good explanation of the prostate and the various treatments available. It helped me to understand that proton therapy was the way to go.
Contact was made with M.D. Anderson Cancer Center in Houston to meet with the team at the proton center. As it turned out, the oncologist I met in Houston confirmed that proton therapy was the ideal treatment for my prostate cancer diagnosis. Home away from home became an apartment found through Houston area churches that minister to cancer patients at M.D. Anderson by renting apartments, at reduced rates, for the time needed. For the next nine weeks, Houston became home, in order to undergo proton therapy.
While receiving the 40 treatments, I never missed a beat. I got up each morning and walked for about an hour and a half. I never felt fatigued, nor did I experience any negative side effects.
While my health insurer immediately approved my proton therapy, I know that is not the case for many patients dealing with this scary diagnosis. I had retired from one employer, yet, was able to keep my insurance with United Healthcare, who approved coverage for my cancer treatment with no questions asked.
I am beginning my 10th year of cancer free living. My family physician does routine DRE and blood tests, to make sure the cancer hasn’t returned. My cancer journey was relatively smooth compared to the battles others endure, when denied the best available treatment by the very people they trust to ensure access to healthcare – their insurer. It shouldn’t be that way. For each man I have counseled concerning prostate cancer, my unequivocal recommendation is “proton therapy treatment.”
“Proton therapy was the only curative course of treatment in my cancer journey that would not put me at risk for losing an additional 30 percent of my vision. Proton therapy took my vision loss risk from 30 percent to just three percent. For me, it was my only chance of ensuring I could watch my children grow up.”
As an endurance athlete, Brad spends many hours a week training for marathons and Ironman events. When he’s not running, he enjoys spending time with his wife and young children. So it’s no surprise, that cancer was the furthest thing from his mind four years ago.
However, a host of odd symptoms including an intense sense of déjà vu and a strange taste in his mouth even when he hadn’t eaten, led Brad to consult a neurologist. As an athlete acutely in tune with his body, he knew something was not right physically.
Initially, his neurologist pegged his symptoms to a form of epilepsy, but an MRI revealed a baseball sized tumor located on the right side of his brain.
At 31 years old, with a wife and new baby, and in peak athletic shape, the news came as a complete shock to Brad and his family.
Brad’s neurologist laid out three options to treat the tumor:
- Wait and watch
- Perform a biopsy on the tumor
- Remove as much of the tumor as possible
As the tumor was diffused across his brain, chemotherapy and traditional radiation were not viable options. Brad and his care team opted for option 3 and immediately scheduled surgery.
One month after diagnosis, Brad emerged from a successful surgery that strategically removed 95 percent of the tumor and returned home after a short hospital stay. Despite changes to his vision, Brad returned to his normal activity level just six months after his surgery, thanks to the support of an excellent care team.
Just a year following surgery, Brad could race again and competed for the first time in over a year at a local 10K, for which proceeds raised went directly to cancer research.
Shortly thereafter, however, a quarterly scan revealed that the remaining five percent of the tumor left in his brain during surgery had begun to grow. Brad’s case was sent to a panel of experts at Barnes-Jewish hospital, known as the “Tumor Board,” who decided proton therapy was the best course of action to defeat his cancer once and for all.
Proton therapy was the only curative course of treatment at this point in Brad’s cancer journey that would not put him at risk for losing an additional 30 percent of his vision or adversely affecting his quality of life, which he and his care team had worked so hard to rebuild. In fact, proton therapy took the risk of vision loss from 30 percent to just three percent.
Brad’s proton therapy was complemented with oral chemotherapy and traditional radiation. The care plan allowed him to keep working, running, and enjoying time with his young family while undergoing treatment.
His proton therapy radiation treatment proved successful and removed the five percent of the tumor left behind by surgery and, so far, there is nothing to indicate his cancer’s return. Other than the initial vision loss he experienced as a result of his surgery, Brad lives with no side effects following proton therapy and continues to enjoy his life as a competitive athlete, accomplished professional, and loving family man.
After having weathered the storm, Brad’s goal is to be the first person to live to 100 years having been diagnosed with brain cancer at 31. After four years of living cancer free and with a healthy lifestyle and continued optimism, Brad is surely on the right track.
Age: 30 (at original diagnosis bladder ca), 37 (diagnosis of lung ca)
“The location of my cancerous lymph node made me an ideal candidate for proton therapy because it limited excessive amounts of radiation to my heart and esophagus – which can lead to damaging side effects that have significant physical and financial consequences over time. During my seven-week treatment course of proton therapy, I experienced little discomfort, limited to a sore throat when swallowing. Today, I am living cancer free with absolutely zero side effects.”
You’ve heard the old saying when referring to any kind of journey, “Remember this is a marathon, not a sprint.” And this saying couldn’t be more true for Chuck Martinez, a two-time cancer survivor and running enthusiast, thanks to access to proton beam radiation therapy.
First diagnosed with aggressive bladder cancer at the young age of 30, Chuck underwent immunotherapy and had his bladder reconstructed. The treatment worked and Chuck was declared cancer free.
However, the good news didn’t last long. Just a few short years later, his urologist found a mass on the lower portion of his right lung. Immediately, Chuck underwent surgery to remove the entire middle portion of his lung and thankfully, the surgeons were successful in removing all of the physical tumor, but to be sure the cancer was gone, they recommended he undergo an aggressive round of chemotherapy.
Chuck and his wife decided to seek a second opinion at MD Anderson Cancer Center as his wife’s employer had an excellent insurance plan that allowed for complete cancer care coverage. His oncologist ordered a battery of tests, which revealed a lymph node that tested positive for the same form of cancer in his lung.
Chuck’s disappointment quickly turned to hope when his oncologist informed him he was an excellent candidate for proton beam therapy- a treatment he had never heard of before. The location of the lymph node is his chest made him an ideal candidate for proton therapy as traditional radiation therapy exposes the heart and esophagus to excessive amounts of radiation- which can lead to damaging side effects that have significant physical and financial consequences over time.
The oncologist and multidisciplinary medical team quickly devised a treatment plan.
Within weeks of his first appointment, Chuck began his proton therapy. During his seven-week treatment course, he experienced little discomfort, limited to a sore throat when swallowing. To bolster the effectiveness of the proton treatment, Chuck also received a course of chemotherapy and, as result, experienced mild fatigue and queasiness.
However, for the most part, life during his seven-week treatment went about as usual and Chuck felt back to normal within two weeks of his treatment ending.
Chuck has now been cancer free since 2007.