Local cancer patient fighting for insurance changes

Whitman County Gazette

By Jana Mathia | May 24, 2018

What’s worse than being diagnosed with cancer? Having cancer while fighting with your insurance company to get treatment is what Marcia McNannay of Palouse learned.

“That time that you sit and wait is worse than the treatment,” she said of the four months she battled with her insurance company to get approval for cancer treatment.

“You don’t know how many times I planned my funeral in those waiting times.”

McNannay was first diagnosed with a very rare form of breast cancer in 2014. She went through the usual route and received chemotherapy and eight weeks of photon radiation in 2015, then went back to work for a year before learning the cancer had come back. The tumor was chemo-resistant and a person can only receive one go-round of photon radiation which can cause secondary cancers. In McNannay’s case, treatment on her breast cancer was sending radiation to her heart and lungs.

She went to Seattle Cancer Care Alliance to get a second opinion for treatment. There she learned about the option of proton therapy which offers stronger radiation, but is more refined in that it only hits the tissue it is aimed at, so she would be able to have her breast tissue treated but not affect the organs beyond that.

“The main idea of proton therapy is it doesn’t over-radiate,” explained McNannay’s husband Rick, who is also the Colfax Police Chief.

Marcia thought the treatment would help her gain a couple of years, but the doctor told her “you’re going to thrive.”

“I was just relieved at that point,” she said. They moved forward in the process to get her the proton therapy by contacting the proton therapy clinic in Seattle, one of only 27 in the nation.

Then came the hard part.

“I fought for four months with insurance companies to get approved,” she recalled.

While her doctor had recommended the FDA-approved proton therapy and it reduced her risk of complications from treatment later in life, McNannay said she was stonewalled, only once able to get past a first call-taker, never able to get a clear answer or review.

“It’s just road blocks. Denial after denial,” she said. “I’d probably still be sitting here with no treatment.” She said the stress of going through the battle with the insurance was worse than the treatment. Proton therapy is easily approved for children, seniors and anyone on Medicare, but her insurance company into which she had been paying for 25 years rejected it.

“When you buy insurance, you expect you’re going to get insurance,” Rick said. Her insurance had been great for smaller things, but when it came to a life-threatening situation they got nowhere.

The McNannays employed a lawyer from Spokane who had already been in litigation with their insurance company to help her fight to get the treatment. Marcia calls it “God’s wink” that their lawyer just happened to be in deposition with executives of the insurance company the next month and brought her case up. McNannay met with the executives and the door was flung wide open for her,― which she credits to the executives knowing the company was in the wrong.

Due to the type of cancer she has, McNannay will never be cancer free, but after the proton therapy there is no evidence of the disease. She goes back every three months for more treatments and receives infusions every six months to keep the cancer from going to the bone as it is expected to do. At last check, her lungs and heart were also cancer-free.

“I feel like the lucky one,” McNannay said for being able to get treatment. She met a man who took out his retirement to pay for the treatment since he couldn’t get his insurance to cover it. At one point, she even gave up on the hope of getting the treatment at all herself.

Rick noted that his wife is a very private person, so it is a big deal for her to come out about the issue. Now she is part of the Alliance for Proton Therapy Access and sharing her story and speaking out to prompt changes in insurance.

“I am so upset,” McNannay said. She has met cancer patients from all walks of life and saw so many children while undergoing treatment being treated themselves. While the executives from her insurance company told her they were going to fix their system, she knows people are still getting turned away by call-takers. McNannay said that once a doctor tells a patient they need a certain treatment, the insurance company should not be able to have a say in whether or not they receive it.

McNannay chose not to name the insurance company she fought with as the focus of the Alliance for Proton Therapy Access is to get the attention of the insurance commissioners and provide treatment for all cancer patients, not to just call out one company. The Alliance released a national report, “Cancer Care Denied: The Broken State of Patient Access to Proton Therapy” May 17. McNannay’s story was just one of several included in the report and they all tell the same story of cancer patients being denied treatment.

“I had no idea that my biggest fight would be with the insurance company. That was the last thing I was prepared for, and I don’t think anyone needs to have that fight,” she is quoted in the report.

McNannay joined the Alliance in December of 2017. She and Rick did a Facebook live event with her doctor and the Alliance to share her story and struggle.

The Alliance is urging insurance commissioners in all 50 states to adopt and enforce a Cancer Patients’ Timely Treatment Bill of Rights which calls for fair, timely and appropriate access to doctor-recommended cancer treatment, enforcement mechanisms such as automatic approval if insurers fail to meet timelines and meaningful fines for repeated failure to provide fair, appropriate approvals and the same rights for cancer patients covered by employer self-funded plans. McNannay said she wants fair treatment for all cancer patients

“Nobody should be treated that way,” she said. While the Alliance’s focus is on access to proton therapy, she wants cancer patients to have access for any treatment their doctor recommends.

McNannay wishes she would have gotten a second opinion when she was first diagnosed with the cancer and gotten proton therapy then. When it came around again, she took more charge of the situation and advocating for herself. Her advice to others is to always get a second opinion, to which Rick added to get the opinion from a different area, not just another doctor in the same location.

According to the McNannays, when Marcia dies, it will be more a result of the treatments she has received than the actual cancer. Her immune system is compromised by continued chemo to keep the cancer from spreading and they carefully watch and monitor her lungs and heart for cancer borne from the photon radiation.
But instead of worrying about that, she is fighting alongside others for the rights of all cancer patients.

“As long as I can fight this, I will fight this,” McNannay said.

The Alliance was formed in 2017 to help patients share their stories publicly to call attention to insurance denials and advocate for fair and timely payment decisions from their health insurers.

To learn more or support the Alliance, visit CancerCareDenied.org.