Sarah Lai’s journey with lung cancer began on an otherwise ordinary night in September 2022. She was talking to her husband before going to bed, when she felt the need to cough.
She went to the sink, and instead of coughing up phlegm as she expected, she coughed up half a cup of blood. Lai said she wasn’t in any pain, but went straight to the ER to get checked out.
As a non-smoker, the first thought wasn’t lung cancer. She was quarantined as a potential tuberculosis patient, but a CT scan showed a 1.7 centimeter nodule in her lung. She was diagnosed with epidermal growth factor receptor (EGFR) lung cancer, a type of non-small cell lung cancer. The lining of her lungs were inflamed from an infection, caused by inhaling large amounts of dust in a warehouse. Lai is one of many non-smoking, Asian women who have been diagnosed with EGFR – a genetic mutation that appears in two-thirds of Asian women with lung cancer.
What Lai didn’t know at the time was that night was the beginning of a three-year battle, not only with lung cancer, but with her insurer to cover her life-saving proton therapy treatment.
The first team of doctors Lai saw recommended traditional radiation for her, but upon doing more research, she opted to look into proton therapy instead.
“We were doing more research, we were reading up about different things, and obviously proton therapy came up, and that seemed like the best option to limit side effects and make sure I was strong through treatment,” Lai said.
Lai had a virtual consultation with a proton therapy center, and decided to go forward with the treatment, committing to travel hundreds of miles from her home in Los Angeles. She started treatment two weeks later – concurrent chemoradiation.
From the start of her treatment, Lai knew there could be a risk in getting her insurance to cover it fully. But knowing the treatment had “curative intent,” she was hopeful it would be covered and felt it was the best option for her.
“We’re not wealthy by any means, but we’re both working, and we said, we’ll make it work,” Lai said. “We’ll make it with payments. We’ll have some support. We have savings. We’re going to try.”
Because of Lai’s insurance plan, the center was required to bill her insurance. And her insurance wasn’t going to cover the treatment, meaning Lai and her husband were now on the hook for the entire cost of the treatment.
“That was upsetting to hear,” she said. “But again, the important thing is we start treatment, so let’s just go the insurance route. We don’t have any choice.”
Lai finished her successful proton therapy treatment in December 2022. Six months later, she began receiving bills for what she owed. Her insurance completely denied it, saying it wasn’t medically necessary, but Lai was determined to fight. From there, she wrote appeals letters, spent hours on the phone with her insurer, her physician wrote appeals letters – all with no change to the decision.
It turned out her plan administrator hadn’t received the letters, since they were addressed to the insurer, and not the administrator.
“There was a lot of frustration there, because it was just like unnecessary stress, and eventually, like so a year after so, in September 2023, they covered around 80% of it and that was simply because they read my file.”
Her insurer denied three routine codes – her daily scan to line up the proton beam, her weekly follow up appointments and a facility fee. She filed two more appeals with the insurer, which were denied. She crafted her third and final appeal after connecting with NAPT and legal counsel. To her surprise, it was approved, and after three years her battle for coverage had ended.
“I was fully expecting a denial, so my advice is to just advocate for yourself and you just never know. If you don’t ask, you’re not going to get it,” she said.
Lai said she realizes how fortunate she is, not only to have her proton therapy treatment covered, but also to be able to advocate for herself. She’s also thankful to her physician, who she said went above and beyond on her behalf, writing appeal letters and connecting her with advocacy resources, like NAPT.
“I am so lucky to have the education to go through this, reading through the insurance handbooks, writing a good letter, and all that. I have a flexible job because I was constantly on the phone with insurance and letting them know I’m not relenting, I’m going to fight this. And that my health is OK, my quality of life is 99% of what it used to be. And I know that a lot of people are not in this situation to be able to fight this for three years.”
If you or someone you know is struggling to get insurance approval for proton therapy, please visit our Insurance Denials and Appeals Toolkit.
