Barbara Strugalla, 58, has five cancerous tumors in her left lung, one right near her heart and four more fanned out like a deadly constellation.
It was the return of a rare cancer that starts as a tumor on the myelin sheath – the protective lining that covers the nerves.
A Geneva resident and Navy nurse veteran, Barbara and her husband Ed Strugalla went through some intense stress as their health insurance company, Aetna, denied the proton therapy her doctor recommended as “experimental.”
They appealed and it was denied again.
After a reporter contacted the insurer, Aetna approved the appeal – then denied that it was approved.
A few days later, they did approve it – and blamed Barbara and her doctor for not following the right process for their second appeal, according to an email from the insurer’s spokesman.
“Although the member and her doctor did not follow the plan appeal process with respect to the original denial, Aetna itself initiated an expedited review by an external review organization (ERO),” according to an email from Aetna spokesman Philip Blando. “I’m confirming that the procedure was, in fact, approved on June 12. Aetna strives to put our members first and we appreciate the value of external review in these complicated situations.”
In an email statement the Strugallas wrote, “We are ecstatic that the insurance company ultimately reversed its decision and approved proton beam therapy.”
“Our family and friends have also been a tremendous source of encouragement and strength during this frightening and uncertain time,” according to their email. “We are incredibly appreciative of the excellent, individualized care Barb is receiving at Northwestern Medicine.”
While waiting during the appeal, Barbara suffered. She was in constant pain, in and out of the hospital for pleural effusion, a procedure to drain fluid build-up in her left lung, according to the Strugallas’ email.
Proton beam therapy is a type of radiation treatment that precisely delivers a beam of protons to disrupt and destroy tumor cells. It can cost up to $200,000, but the couple said they never got an exact total of what her therapy would cost.
The Strugalla’s adult children started a GoFundMe while waiting for the appeal, eventually raising $15,338.
‘Not approved’
Documents provided to the Kane County Chronicle show Barbara’s doctor submitted a request for proton therapy June 1.
In a responsive text message the same day, Aetna denied the coverage.
“Your prior authorization request was not approved,” Aetna said in a written response to Barbara. “We base our decision on many factors. These include the quality, cost and safety of certain services and medications.”
In a follow-up letter June 4, Aetna said, “This procedure is experimental or investigational under the terms of your plan … The plan does not cover experimental or investigational services listed in the Exclusions section of the benefit plan document.”
“Medical studies haven’t proven that proton beam radiotherapy is effective to treat your condition,” according to the denial letter.
Aetna’s response stunned the Strugallas, as their previous insurer, Cigna, covered proton therapy last year for the same cancer.
What stunned them even more was what Aetna’s medical director told Barbara’s doctor during their appeal process: “If it is that advanced, then she should consider hospice care.”
“We feel it is inhumane and cruel to deny life saving treatment for a paying insurance family and offering hospice care as an option instead,” the Strugallas wrote in an email.
Blando denied the insurer said that.
“Importantly, we did not suggest Mrs. Strugalla should stop treatment and enter hospice care at any point in this process,” Blando said in an email.
Barbara gave written permission for her doctor to speak with a reporter.
Northwestern Medicine’s spokespersons said in an email that Barbara’s doctor would not be available for an interview.
Proton therapy
Contrary to what Aetna asserted, proton therapy is neither new, experimental nor investigational.
The U.S. Food and Drug Administration approved it as a radiation treatment option in 1988.
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And the fact that it was developed in the Fox Valley, at Fermi National Laboratory in Batavia, made Aetna’s reason for the initial denial a cruel irony for the Strugallas.
“The skeptics are being proven wrong,” according to Fermilab’s Proton Treatment Center Newsletter of June 1993.
“When physicists unveiled the proton accelerator for the first time in 1989 at Fermi National Accelerator Laboratory, physicians at Loma Linda, (Cal.) … predicted it would become a major tool in the war on cancer,” according to the newsletter. “Protons were first suggested as a potential cancer therapy in 1946 by Robert Wilson, who established Fermilab. Wilson’s vision proved to be accurate.”
Proton therapy can be directed at the cancer while sparing surrounding tissue, unlike conventional radiation, according to the Fermi newsletter.
“To avoid complications, physicians often lower radiation dosages to spare healthy tissue. But that can allow malignant cells to survive,” according to the newsletter. “Protons … go precisely where the physicians want them to go and no farther. So, while a tumor is being bombarded by protons, surrounding normal tissue is left intact; the patient is spared debilitating side effects.”
Fermi physicist Don Lincoln, Ph.D., author and host of the YouTube channel Fermilab, also presented a video on how proton radiation therapy works in 2017.
According to the National Association for Proton Therapy website, the Northwestern Medicine Proton Center, 4455 Weaver Parkway, Warrenville, is the first proton therapy center in Illinois and the ninth center in the U.S.
Northwestern’s proton center, where Barbara is now receiving proton therapy, is 11.4 miles from Fermilab, where the therapy was first developed.
She will receive proton therapy through August, then will begin chemotherapy.
The couple will celebrate their 26th wedding anniversary on Dec. 16.
Proton lawsuits
Aetna has a history of being successfully sued for denying proton therapy to cancer patients.
The most recent was a $3.4 million class action settlement in Florida last year for 71 claimants.
Another was the family of Orrana Cunningham, an Oklahoma woman who later died. Her family sued and won a $25.5 million judgment in 2018.
A ProPublica and Capitol Forum investigation reported in 2024 that Aetna and other health insurance companies use a third party to deny coverage, usually EviCore by Evernorth, which is owned by Cigna.
A decorated Navy nurse
Barbara Strugalla served as a nurse in the Navy from 1991 to 1998, on the USNS Comfort and in Okinawa, achieving the rank of lieutenant, according to her DD214 discharge documents.
She received the Humanitarian Service Medal, the National Defense Service Medal, the Armed Forces Expeditionary Medal, the Meritorious Unit Commendation, Navy Unit Commendation, Navy and Marine Corps Overseas Service Ribbon and the Joint Meritorious Unit Award, according to her service record.
Barbara works as a nurse supervisor in the medical unit for Farmers Insurance. Ed is a speech pathologist.
“As a nurse, Barb understands the importance of patient advocacy,” according to the Strugallas’ email after proton therapy was finally approved.
“As a speech-language pathologist, I also know how critical it is for healthcare professionals and patients to advocate for the care they need and deserve. This experience has reinforced our belief that insurance companies should place greater trust in the physicians who know their patients best,” according to their email.
In an email, Aetna’s spokesman Blando said, “Given the complexity involved with this situation, when that first external entity upheld our denial, we sent it to yet a second ERO and immediately initiated an additional, same-day peer to peer conversation.”
“As a result, the service has been authorized,” according to Blando’s email. “We understand how difficult these situations are for patients and their families and are here to help as this member moves forward with her care. Aetna strives to put our members first and we appreciate the value of external review in these complicated situations.”