“Each step adds time”: LUNGevity on the hidden delays in lung cancer diagnosis
Brandon Leonard and Ann Steagall of UICC member LUNGevity explain how timely diagnosis and referral are central to improving outcomes for people with lung cancer, and the steps needed to improve their availability.
HIGHLIGHTS
- Brandon Leonard and Ann Steagall of LUNGevity, a UICC member, outline how multi‑step diagnostic pathways and long waits for imaging, biopsies and biomarker testing often extend the time to treatment by months.
- Geographic, financial and digital access barriers disproportionately affect rural communities and minority populations, including Native American populations, while current screening approaches often fail to reach people who develop lung cancer at a younger age or without a history of smoking.
- Inconsistent referral practices and limited primary‑care awareness contribute to repeated missed opportunities for early investigation.
- Improved coordination, earlier specialist involvement and stronger provider education are essential to reducing delays and ensuring equitable diagnostic pathways.
People with lung cancer often enter the health system in the US only after several weeks of symptoms, multiple appointments, and a sequence of referrals. These delays before a confirmed diagnosis are not exceptional but built into how the process works in practice, where diagnosis typically unfolds from an initial consultation, to imaging, to biopsy and specialist review – with waiting times at each step.
The delays add to the fact that lung cancer often presents with vague symptoms. When it involves a younger person or someone with no history and tobacco exposure, screening is not on the priority list of the primary care physician.
As a result, cancer is often detected at a later stage, when treatment is more complex, more invasive, and less likely to be successful. This is compounded by the nature of the disease itself. Early-stage lung cancer frequently causes few or no symptoms and is therefore commonly detected only once it has progressed.
Lung cancer remains the most commonly diagnosed cancer and the leading cause of cancer death globally, responsible for more than an estimated 1.8 million deaths in 2022, according to WHO.
LUNGevity Foundation, a UICC member based in the United States, works across research, patient support, and policy to improve outcomes for people with lung cancer. Its activities include funding early-stage research, supporting clinical trials, providing patient education and peer support, and advocating for policies that improve access to timely diagnosis and treatment.
Delays built into the diagnostic process
For Brandon Leonard, Vice President of Government Affairs, and Ann Steagall, a thoracic oncology nurse and Senior Vice President of Patient Services and Healthcare Delivery, several factors contribute to these delays. They pointed to limited availability of services, inconsistent referral processes, and gaps in provider awareness, all of which can affect timely diagnosis and access to appropriate treatment.
Steagall explained that the typical patient experience in the US unfolds across several stages, often starting with a primary care visit for a persistent cough or respiratory symptom. A person may initially receive antibiotics, and only later undergo a chest Xray, followed by a CT scan.
“It can often take several days to a week to actually get a patient in for a CT scan. If the results raise concerns, the next step is often a biopsy,” she said. “Each step adds time at a moment when the disease may already be at an advanced stage.”
The Lung Cancer room is a dedicated space for the lung cancer community to stay connected, share knowledge, and exchange key insights from lung cancer experts.
Steagall added that when biopsies are completed, further delays frequently occur while waiting for biomarker testing. She emphasised that biomarker testing is critical because the results determine whether a person is eligible for targeted treatments or immunotherapies, and starting treatment before receiving them can be detrimental.
“Right now, however, getting results can take as much as four weeks. A whole month before the person can start treatment. We are getting better at it, in some cases, it may be two weeks. But that biomarker testing still takes a little while to complete.”
“From the time that you may present to your primary care physician to you actually start appropriate therapy could be a couple of months,” Steagall said. In contrast, larger centres with dedicated lung cancer teams may complete the same process in three to four weeks.
Access to diagnosis shaped by systemic barriers
Such facilities are out of reach for many, however, highlighting how differences in geography also shape access to care. “In a country as large as the US, people can take several hours to travel to an appointment, especially in rural states,” said Leonard. “For people who cannot take time away from work or caregiving responsibilities, or who face long travel times, multiple visits to specialised centres can be prohibitive.”
These structural barriers are reflected in disparities across populations. Steagall noted that rural states may lack comprehensive cancer centres entirely, and that people in remote areas face particular challenges. “People living on Native American reservations, for example, often face extremely long journeys – on average, about a four-hour drive – to reach comprehensive cancer care,” she said. In contrast, some urban regions have several centres within short distances. Community practices, which treat many people in rural areas, have limited access to clinical trials, further limiting treatment options.
The issue is compounded by variations in the extent of health insurance coverage for follow‑up screening and diagnostics. “You get the care that you can afford, unfortunately, and some people are able to pay out of pocket for better care and for others, that’s simply not an option,” Leonard explained.
Digital literacy also plays a role in whether people are able to access information, understand their options, or seek appropriate referrals. Steagall noted that “one of the things that really concerns us at LUNGevity is people who are not internet savvy, who do not have ready access to all of these types of resources. Some patients are able to navigate online resources, others have limited access to reliable information online, making it more difficult to enter the diagnostic pathway or seek timely care.”
The Foundation works directly with community healthcare providers and nurse navigators, and maintains active support groups where people can exchange experiences and learn from others. “We also support them in advocating for themselves,” said Leonard. “A lot of people are not inclined to challenge a provider, and that can delay diagnosis if lung cancer is not already on the provider’s radar.”
Delayed diagnosis is also common among younger adults and those without a history of tobacco use, a significant cause of cancer. Leonard described how they may present repeatedly with symptoms, yet clinicians assume they are at low risk for lung cancer due to age and non-smoking history.
“This frequently leads to missed opportunities for screening or early investigation,” he said. “Many hesitate to advocate for themselves due to a perceived power imbalance between patient and provider.”
These patterns of delayed recognition in clinical settings intersect with broader changes in the populations now being diagnosed with lung cancer. Steagall pointed to shifts in the profile of people developing lung cancer, noting that “the fastest growing group of lung cancer patients are women under the age of 50 who never smoked,” and said that this trend underscores the importance of reassessing who is screened and how symptoms are evaluated in primary care. “Despite ongoing research into possible environmental causes, we just don’t have the data yet to understand why, but there are lots of people looking at it.”
Improving diagnostic pathways, Steagall and Leonard emphasised, requires better coordination and earlier involvement of lung cancer specialists. “Multidisciplinary case discussions – where surgeons, oncologists, radiologists, and pathologists review a person’s case together – can help ensure that people are directed to the right tests and treatment options more quickly.”
They also highlighted the importance of partnerships between patient advocacy groups, healthcare providers, researchers and policymakers in addressing systemic barriers. “We have a lot of common policy goals that we work on with partners,” Leonard said, noting that collaboration is essential to improving coverage, strengthening provider education, and ensuring more consistent access to diagnostic services.
Other key components, they added, include supporting patients to navigate the system and seek appropriate referrals, addressing gaps in coverage for follow-up diagnostics, and strengthening provider education – particularly in primary care – to support earlier recognition of potential lung cancer cases.
Last update
Friday 17 April 2026
