How investing in Cancer research now will save money in the long term

“It looks like cancer, Mrs. Peck. I’d guess some type of lymphoma, but I’m not an oncologist.”

“Am I going to die?”

“I can’t say. I’m not an oncologist.”

“What do I do?”

“You’ll meet with an oncologist. Otherwise, I can’t say.”

In 2018, this was the discussion I witnessed as an emergency room physician notified me and my wife that chest x-rays had revealed a substantial mass spread throughout her body. Mind you, this discussion took place months after my wife first began suffering from a chronic cough, shortness of breath, and other symptoms of what we would later discover was cancer.

Upon suffering from these symptoms, my wife visited her primary care physician – who, following a brief examination – declared that my wife was suffering from bronchitis. A month later, as it worsened, the diagnosis changed to asthma. This chain of misdiagnoses continued until my healthy, young (mid-thirties) wife could no longer climb a staircase without nearly collapsing. She finally insisted upon having a chest x-ray performed. This x-ray – and the worrisome results – prompted her PCP to rush her to the ER, where further examination revealed that for months, cancer had raged through her body unchecked.

I and my family are participants of my company’s self-funded health benefit plan. That plan paid for her PCP visits; visits that were ultimately useless at best, and harmful at worst. That plan paid for the antibiotics and inhalers meant to treat colds and asthma that didn’t even exist. That plan paid for the ER visit… and that plan would now pay for intensive, urgent care that may have been (though not eliminated) reduced in its volume, severity, and duration had the cancer been caught sooner.

Misdiagnosis cost my wife and my plan dearly… more than once.

Subsequent to this general diagnosis, my wife was referred to an oncologist who, upon examining the scans declared that, based on the appearance of the tumor and my wife’s demographic, he was 99% sure the cancer was Hodgkin’s Lymphoma. He happily declared that, other than skin cancer, this is the cancer to have. Treatable with brief weekly outpatient chemotherapy infusions, for the span of a few months, her prognosis would exceed 90% survival rates.

Following a biopsy, that oncologist declared he was correct regarding his initial diagnosis. He began scheduling her treatments – for which my health benefit plan would again be paying the financial cost. But for a second opinion, my plan would have paid for worthless treatments, and my wife would have paid with her life. A second opinion, which was optional – and is certainly not standard operating practice – revealed a misdiagnosis on the part of this oncologist. My wife was suffering from a much deadlier, rare form of Non-Hodgkin’s Lymphoma. Her prognosis decreased drastically, and her treatment plan changed from brief, weekly outpatient visits, to more than half a year of week-long inpatient stays at a hospital.

Certainly, this resulted in substantial costs for my health plan, not to mention psychological and emotional costs for my wife and family. But, imagine how much higher the costs would have been if she had begun treating for a cancer she didn’t have? Assuming her providers would have eventually noticed that the treatment wasn’t working, they would have scrambled to identify and treat the real cancer – resulting in even more intensive, urgent, and expensive care… to say nothing of the chance that she would have lost her life.

Cancer costs health plans and insurers a lot, and it is getting worse. In 2015, an estimated $183 billion in medical care costs was spent on treating cancer, and based solely on population growth, experts predicted that number would jump to $246 billion by 2030 (Mariotto AB, Enewold L, Zhao J, Zeruto CA, Yabroff KR. Medical care costs associated with cancer survivorship in the United States. Cancer Epidemiol Biomarkers Prev. 2020;29(7):1304–12). What that prediction failed to account for, however, was the COVID-19 pandemic.

In 2021, following the pandemic, health care costs arising from or related to cancer spiked after a relatively flat 2020, and that trend has not yet flattened out. Experts predicted, during the COVID-19 pandemic, that we would see this exact result due to non-emergency care being delayed or avoided by patients, including routine cancer screenings. Missed screenings naturally led to undetected cancer. Undetected cancer naturally led to worsening conditions and more severe cases. More severe cases led to more intensive – and costly – treatment. As a result, in 2023, cancer officially overtook musculoskeletal conditions as the largest driver of cost for health plans and insurers, and took the second overall spot for total health care costs behind cardiovascular disease.

Meanwhile, as mentioned, the price of cancer care continues to rise at an alarming rate. This is driven in large part by late detection, misdiagnosis, hospital consolidation, specialty drug costs and inefficient care. Moreover, the issue is compounded by the fact that in the United States, more people are being diagnosed with cancers – at a higher rate and younger age. Based on the National Cancer Institute’s (NCI) Surveillance Epidemiology and End Results (SEER), 1 in 2 men and 1 in 3 women will develop invasive cancer within their lifetime.

My wife’s misdiagnosis is not a unique story. Looking at one cancer in particular, that being breast cancer, a new study revealed that the costs from false diagnosis are “much higher” than previously documented. Specifically, that among women ages 40 to 59, more than $4 billion is spent on misdiagnosed cancer.

Misdiagnosis leads to delays in receiving effective treatment, which in turn makes more intensive care necessary (thereby driving up the costs), not to mention the cost of the ineffective treatment as well. This, on top of potential injury or illness (and the cost of treating those) that result from ineffective treatment. “In 2015, the National Academies of Sciences, Engineering, and Medicine released a report that said, ‘Errors can be harmful because they can prevent or delay appropriate treatment, lead to unnecessary or harmful treatment, or resulting in psychological or financial repercussions’.”

The bottom line is that early detection, accurate diagnosis, and prompt treatment result in better results, fewer post-treatment complications or secondary diseases, and lower cost options. Identification and treatment of cancer at an early stage before it has a chance to spread saves lives and saves money. It allows patients and payers to avoid costly, intensive treatment while meaningfully improving clinical outcomes.

Indeed, when looking at the overall cost of treating cancer, the most expensive “phase” in a cancer patient’s care is during an “end-of-life” cancer death phase. By more accurately diagnosing, and more effectively treating cancers, we avoid this stage altogether. The bottom line? Every dollar spent on research, prevention, screening, second opinions, and patient navigation is returned tenfold.

With this in mind, Congress is actively discussing reforms to the health care and health payer industries, to address these trends. Likewise, when President Joe Biden was Vice President in 2016, he announced a so-called “Cancer Moonshot.” Since his arrival in the Oval Office, this campaign has been one of his ongoing efforts. Among other things, their published goals include pushing for research on treatment and prevention, outreach and education, provider and payer innovation, and support for patients and their families.

In March of 2024, First Lady Jill Biden hosted a gathering of private payers and providers to address this topic, and specifically formalizing patient navigation as part of the standard of care, including mandating coverage of claims for such medical management. Normally, “forcing” payers to cover something additional would be seen as an added cost, however, it is generally accepted that for the reasons described above, patient navigation actually results in better – less costly – outcomes. As a result, during this March meeting, the representatives of large carriers and health plans, as well as self-funded health plans, unanimously agreed to cover the cost of such navigators. Likewise, the Centers for Medicare and Medicaid Services (“CMS”) announced that they would also cover such costs, and are establishing billing codes to facilitate said process.

Health insurance carriers and benefit plans are, however, doing more than covering navigator claims. With a philosophy in mind that, “an ounce of prevention is worth a pound of cure,” these payers are also covering genomic testing – to further make certain that a proposed treatment plan will be effective (and thus not be a waste of time or money) – and multicancer early-detection tests.

Yet, as this positive news conveys a sense that the payer market is moving in a direction that will both save lives and contain costs, other forces are at work that continue to increase costs. One such issue is the problem of provider consolidation. As providers are purchased by large health systems, payers are left with less leverage to negotiate lower rates. This is felt nowhere more so than in the area of oncology and cancer care; where the stakes are as high as the prices. As insurers and health plans attempt to shift some of this increased financial burden onto the patients, said patients are in turn delaying or foregoing treatment. While this may reduce costs in the short term, for all the reasons previously discussed, worsening conditions in turn result in more intensive (and costly) care later on.

Related: Cancer benefits: healthy habits lead to long-term success

Next on the list of cost drivers is specialty drugs. Specialty drugs represent nearly 60% of all pharmacy spending, and few diseases invite the use of specialty drugs quite like cancer. While payers are attempting to curb this trend through the use of site-of-care management (educate patients to seek treatment outside a costly hospital setting), prior authorization and case management, the tide is clearly rising.

Lastly, politics and case law are having an impact on the cost of cancer care as well. One might be surprised to learn how cases – such as the widely publicized case of Dobbs v. Jackson Women’s Health Organization – are having an impact on cancer care and costs. Cases such as the Dobbs case both impact certain methods for cancer research, but likewise, delay treatment until the illness reaches a point where treatment is more expensive (assuming there is still time to treat the cancer at all). Specifically, some health care providers cannot (or fear to) provide care when abortion is deemed to be the standard of care, such as when a pregnant cervical cancer patient requires immediate chemotherapy due to severe bleeding and other critical threats. Setting aside politics and personal beliefs, this too results in higher costs associated with cancer care.

Ultimately, most agree that investing in research and patient navigation – including second opinions – will result in savings that outstrip spending. Ultimately, however, all those involved will need to take steps now to contain costs while also simultaneously investing in such beneficial efforts. Further, payers and providers must both be aware of changing laws and regulations – directly impacting cancer, but also indirectly impacting cancer as well.

Ron E. Peck, Esq., Chief Legal Officer, The Phia Group, LLC