‘Would he have lived?' When insurance companies deny cancer care to patients

Angela Pike’s husband, Tracy, had just celebrated his 45th birthday when he was diagnosed with Stage 4 stomach cancer. A father of three and the maintenance chief of a Louisville, Kentucky, skyscraper, Pike immediately started chemotherapy, which reduced the size of the tumor his doctor had discovered.

While continuing the chemotherapy would keep him going in the short term, Pike’s best shot at a longer and more healthy life, his doctor told him and his wife, was to undergo a routinely practiced treatment combining surgery and intensive chemotherapy at the MD Anderson Cancer Center in Houston.

After MD Anderson agreed to provide Pike with the treatment, he and his family traveled to Texas in 2023. The night before the first procedure, Pike’s surgeon called to let the family know Blue Cross and Blue Shield of Illinois, Pike’s health insurer through his employer, had declined to cover the roughly $40,000 treatment.

The insurer ruled Pike’s treatment was “not medically necessary” because it was “experimental, investigational and unproven,” documents show.

But this is not the view of the National Comprehensive Cancer Network, a not-for-profit alliance of leading cancer centers, in its widely followed cancer treatment guidelines. The network’s guidelines recommend the procedure Pike sought for “a select group of patients after multidisciplinary evaluation and discussion as well as appropriate clinical context.”

The denial was a temporary setback, Angela Pike figured. “The surgeon at MD Anderson thought it would be an easy appeal,” she said. “We were being told he may have it any day now.”

But despite repeated arguments from the MD Anderson surgeon who said the procedure could save Tracy Pike’s life, Blue Cross and Blue Shield of Illinois continued to reject the treatment.

Angela said the last straw came when she learned that one of the insurer’s physicians who had rejected the treatment was not a cancer doctor at all. He was an obstetrician-gynecologist. In January 2024, Tracy Pike died, leaving behind his wife of 22 years and their three children.

Still struggling to adapt to life without her husband, Angela said: “I cannot help but go back to that month in Texas — what would have happened if he had had that surgery? Would he have lived?”

An NBC News investigation found that a cancer diagnosis, already a crushing blow to patients, is often compounded by insurance company denials of treatments and screenings recommended by a patient’s physician. And this year, Medicare began denying claims for breast cancer imaging needed to identify cancers among many women.

Cancer patients and their families said that protracted peer review processes, where insurers require a physician to discuss a patient’s case with a doctor paid by the insurance company, are harrowing. The insurance company doctor, not the patient’s personal physician, rules yes or no on a procedure. Prescribing doctors characterize these processes as interference.

Last year, 17 % of Americans reported that their insurance company had denied coverage for care recommended by their physician, according to a survey conducted by The Commonwealth Fund, a nonprofit that supports research on health care issues. More than half said they and their doctor did not challenge the insurer’s denial.

Other families, desperate to find care for a loved one, go into debt. Nearly one-third of working-age American adults reported having medical or dental debt last year, according to another Commonwealth survey.

Kay Hsu, a cancer patient who has battled her insurers for years, said the process was debilitating and demoralizing.

“It’s very depressing to know a company has so much power over your life and death,” said Hsu, 46. “You feel like every denial is a life sentence, and not even because of the disease, but because they’re denying you the basic care that you pay for.”

Anger at health insurance companies

Last month, public anger over health insurers’ denials and delays of treatment erupted online after the New York City murder of Brian Thompson, the chief executive of United Healthcare. Expressions of support — as well as donations for a legal defense fund — poured in for the alleged gunman.

Requiring patients to clear endless hurdles to secure treatment is a rising problem throughout health care, according to Dr. Bruce Scott, an otolaryngologist who is president of the American Medical Association.

“Nowhere are the stakes higher than in cancer care,” he said, “where delays can literally be the difference between life and death.”

Academic research shows that cancer patients are directly and disproportionately harmed by health insurers’ care denials and authorization delays.

A 2022 member survey conducted by the American Society of Clinical Oncology, a network of 50,000 cancer professionals, found that 42% of prior authorizations were delayed by more than one business day and that 14% of the delays resulted in a “serious adverse event for a patient.”

The oncologists described the serious adverse event as “delay of treatment” 96% of the time, “denial of treatment” 87% of the time, “disease progression” 80% of the time, and “loss of life” 36% of the time.

A study published last year in JAMA Network, a publication of the Journal of the American Medical Association, found that 22% of cancer patients did not receive the care their doctors prescribed because of authorization delays or outright denials.

Researchers have found that delays and other prior authorization problems extend to combination drugs used to combat cancer. They include nonspecialty drugs, which treat diseases affecting large populations, and specialty drugs, which treat complex or rare conditions.

The number of nonspecialty branded oncology drugs that required prior approvals rose from 16% in 2010 to 78% in 2020, according to a 2023 report in JAMA Network. During the same period, specialty branded oncology drugs requiring prior authorization rose from 73% to 93%, researchers found.

'Things have gotten worse' with health insurers

Five years ago, the American Medical Association convened a meeting with major health insurance companies to discuss potential solutions to the problems patients and doctors face because of prior authorization practices.

“We walked out of the room with what we thought was an agreement,” said Scott, the organization’s president. “But since then, there’s been no action. Since that togetherness we had with them, things have gotten worse.”

The largest private U.S. health insurers are Aetna, Blue Cross Blue Shield entities, Cigna Healthcare, Elevance Health (formerly Anthem), Humana Inc. and United Healthcare. Most are publicly traded and highly profitable companies, their financial filings show.

Asked about Blue Cross and Blue Shield of Illinois’ denial of cancer treatment to Tracy Pike, a spokesman for the company said: “We are committed to increasing access to safe, appropriate, and effective health care based on the best available information and research, and in accordance with a member’s benefit plan.”

The spokesman, who asked to remain anonymous, declined to comment on Pike’s case, citing company protocol. He did not say why Blue Cross and Blue Shield of Illinois declared the treatment recommended by MD Anderson and the National Comprehensive Cancer Network “not medically necessary.”

Dr. Ashley Sumrall, a neuro-oncologist in North Carolina and chair-elect for the government relations committee of the American Society of Clinical Oncology, said the treatment is a widely accepted practice.

“I remember when it was experimental,” Sumrall said. But today “it is routinely practiced,” she added, “and for some people is a huge lifesaving procedure.”

MD Anderson said it had been performing the procedure for over 20 years. A spokeswoman for the hospital declined to comment on Pike’s case.

After Pike died in January 2024, the family received no life insurance payment because that coverage ended when he became too sick to work. The family struggles to get by on his Social Security benefits.

“This is just the ripple effect when an insurance company says you can’t get a lifesaving treatment,” Angela Pike said.

Reforms that 'could be monumental' for patients

Health insurance companies say that requiring doctors to justify the procedures they recommend saves money. For example, Cigna says prior authorization can cut the costs of expensive treatments and prescriptions by requiring patients to try lower-cost alternatives.

But physicians argue that multiple common health insurance industry practices inhibit patient care. First is a lack of transparency about the companies’ internal rules for approving treatments or identifying alternative procedures they will approve. Because many insurers do not publish their rules, doctors waste precious time submitting claims only to have them denied.

Another problem doctors note is having to argue for a procedure with an insurance company physician who is not a specialist in the practice area — the obstetrician-gynecologist who ruled on Pike’s stomach cancer treatment, for example.

And physicians say it can take weeks for insurers to approve or deny some treatments or tests. If the answer is no, a doctor who wants to appeal must begin the lengthy process again.

Physicians also say it is maddening to have to seek prior authorization over and over for procedures that are regularly approved. They believe that doctors who have a history of receiving green lights for treatments or scans should be able to bypass the time-consuming process.

Dr. Debra Patt, an oncologist and breast cancer specialist in Austin, Texas, and the medical director for public policy at the U.S. Oncology Network, has testified before Congress about the problems cancer patients face.

“There need to be responsible ways to use prior authorization,” Pratt said in an interview. “It has gotten quite out of hand. I think of it as patients on a journey and prior authorization is like hurdles along the way that they may not be able to progress past.”

Texas has been at the forefront in tackling delays and denials associated with prior authorizations. The state passed legislation in 2021 known as the Gold Card Act, which exempted physicians from going through the authorization process if private insurers have approved their procedure submissions at least 90% of the time.

Last year, Texas passed a law exempting patients with autoimmune disease from having to go through prior authorization for their procedures. Dr. Ezequiel Silva, an interventional radiologist in San Antonio and chair of the Texas Medical Association Council on Legislation, said that patients with cancer and other chronic diseases should receive exemptions from prior authorization as well.

“There are a lot of patients with chronic conditions,” Silva said. “If we could find a way to exempt them from the prior authorization process, the gains for them could be monumental.”

New screening denials from Medicare

Private insurance companies aren’t the only ones ramping up denials for cancer care and screenings. This year, women at risk of breast cancer began receiving reimbursement denials from Medicare for identical ultrasound screenings Medicare approved in 2023, patient documents show.

Ultrasound screenings identify cancers that can be missed in mammograms, radiologists say. And they are imperative for women with dense breast tissue, a condition affecting nearly half of women over the age of 40, according to the National Institutes of Health.

Dr. Madhavi Raghu, a radiation oncologist in Connecticut, provided NBC News with several redacted patient records showing Medicare declining reimbursements in 2024 for ultrasound breast screenings it reimbursed in 2023. The records represent a small sample of the denials, she said.

Raghu said this shift is particularly surprising because it is occurring during the same year that the Food and Drug Administration began requiring mammography providers to notify patients with dense breast tissue that they may need additional cancer screenings. Those additional screenings include MRIs and ultrasounds for which Medicare is denying coverage.

“It’s unfair to tell a patient you have an increased risk of developing cancer and we have another test to find it, but you’re going to have to pay for that,” Raghu said. “It upsets me to see patients who come in with Stage 3 breast cancers because they didn’t have the opportunity to get screening beforehand.”

NBC asked a spokeswoman at the Centers for Medicare and Medicaid Services about this reimbursement shift, and provided her with documents showing the 2023 acceptances and 2024 denials. She said CMS’s coverage policy has not changed.

“The ultrasound or MRI scans you are referencing are covered by Medicare when provided as a diagnostic test,” the spokeswoman said. “If the scans were provided as a screening test, then Medicare is unable to cover those by law.”

Raghu pointed out that there is only one reimbursement code for a breast ultrasound, regardless of whether it is proposed as a screening or a diagnostic test. As a result, the routine denials by Medicare this year appear to place all breast ultrasounds into the category that is not covered.

Sumrall, the North Carolina neuro-oncologist, said she too has seen Medicare deny many more breast ultrasound claims this year and has heard the same thing from other doctors.

“No one can understand how Medicare reached this decision,” Sumrall said. And because private insurers look to Medicare reimbursement for policy, “it means more private insurers will follow what Medicare is doing.”

The Department of Health and Human Services did not respond to a request for comment regarding the reimbursement shift.

A potential life sentence in every denial

Hsu’s struggle with insurers began in 2015 at an otherwise happy time in her life. She received a breast cancer diagnosis just after she got engaged to her husband. Hsu, a resident of New York City, underwent surgery and chemotherapy, but the cancer moved to her spine and sternum in 2018.

In response, she began aggressive immunotherapy treatments with quarterly PET scans to monitor her metastatic breast cancer. Hsu has continued working and gave birth to her daughter, who is now 4 years old.

Hsu estimates that over the past three years, she has spent roughly 40 hours a month fighting for reimbursements from health insurance companies whose coverage was offered through her workplace.

This year, Hsu said, her problems were with Cigna Healthcare over her PET scans. PET scans typically cost between $10,000 and $15,000 each, and physicians say insurers often deny them. In 2024, Cigna denied reimbursement for two scans ordered by Hsu’s doctor to see if the cancer had spread.

In October, documents show, the insurer said the imaging was not medically necessary because it “is not supported for routine followup or to monitor your condition in the absence of symptoms.”

Hsu offered to undergo a chest CT scan as a less costly alternative, but EviCore, the Cigna unit that handled the decisions, denied that as well, she said.

Hsu said her physician told her that Cigna considered the PET scan unnecessary because she has been cancer-free for five years. But because Hsu’s cancer is metastatic — it spreads — she and her physicians consider a PET scan necessary to monitor for evidence of new cancers.

After Cigna refused to reimburse for the scans, Hsu’s employer, in an unusual step, agreed to pay for them out of pocket.

In a devastating turn in October, a PET scan found Hsu’s cancer had spread to her liver. A hepatic interventional radiologist and two oncologists confirmed to Hsu that the metastasis would not have been uncovered without the PET scan, she said. Had her company not paid for it, she would have been unaware of the metastasis for which she is currently undergoing surgery.

In recent months, Hsu has filed complaints about the denials with Cigna, EviCore, the New York state attorney general and the Labor Department. She said she received no responses from Cigna until NBC News requested comments from the insurer on her case.

A day after that request, Hsu said she received a phone call from Dr. David Brailer, Cigna’s chief health officer. Hsu said Brailer acknowledged her frustration, thanked her for helping insurance companies like Cigna “see the gaps” in their coverage and told her that Cigna was just trying to help employers keep their health care costs low. She didn’t tape the call but memorialized it in an email to him.

“We strive to do our best to ensure that each person gets the appropriate care as quickly and easily as possible,” a Cigna spokeswoman said in a statement. “We fell short for Ms. Hsu. We have discussed this with her and apologized for how we handled her care. We take our responsibility to patients seriously and will always work to improve how we support them.”

Hsu has a suggestion for health insurance companies. In their annual reports to shareholders, she said, they should feature photographs of patients affected by care denials, “including all the children who have lost a mom because they were denied a PET scan.” Cigna declined to comment.

After her call from Brailer, Hsu sent him an email that she shared with NBC News. “This is not just about me,” she wrote, “but all the moms with breast cancer you have denied who have died because of your business model.”

She also asked Brailer what next steps or policy changes Cigna planned to make to ease the burdens of its cancer patients. He did not reply.

This story first appeared on NBCNews.com. More from NBC News:

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