Precision Medicine: Eliminating Disparities in Lung Cancer Care
Precision medicine – treatments that are based on an individual’s specific genetics and the cancer cell’s genes – holds great promise for lung cancer patients. For all patients, precision medicine is made possible through a type of advanced diagnostic testing called biomarker testing. However, for some racial and ethnic minorities, the promise of precision medicine may be out of reach due to barriers in accessing biomarker testing.
Biomarker testing (also called tumor testing, tumor profiling, or tumor genetic testing) is a way to look for genes, proteins and other substances that provide unique information about a person’s cancer and how it grows. It can help determine which cancer treatments are most likely to help and which are not likely to help. It is different from genetic testing, which is used to find out if someone has inherited mutations that make them more likely to get cancer.
In non-small cell lung cancer (NSCLC), there are 37 biomarker-driven treatment options approved for NSCLC patients (as of February 3, 2021) for 9 different biomarkers. Yet in spite of these advancements, lung cancer survival rates are lower for Blacks than whites. Moreover, according to research published in 2021 at ASCO, Black patients get biomarker-tested at a rate more than 10 percentage points lower than that of whites.
The problem, according to Nikki Martin, director of Precision Medicine programs at LUNGevity Foundation, is that while patients of all backgrounds are largely unaware of the existence of biomarker testing and the possibility of precision medicine treatments at the time of diagnosis, patients from underserved communities face more barriers in accessing biomarker testing, which will connect them to the appropriate targeted treatment, immunotherapy, clinical trial or other appropriate care plan. Lower socio-economic status (SES) patients, including Black/African American and Hispanic Latino patients, experience more barriers early in the diagnosis process. For example, they are more likely to request biomarker testing from two or more doctors. Providers may not recommend testing based on perceived levels of patient-specific factors such as socioeconomic status, age, race/ethnicity and health literacy.
“When new advances are introduced in the field of medicine, we tend to speak about them in a positive fashion,” Martin said. “But they are only positive for the people who are able to access them. Unfortunately, new advances often create additional health disparities instead of reducing or eliminating disparities.”
Identifying Barriers to Equitable Precision Medicine Access
In 2020, LUNGevity, along with the Association of Community Cancer Centers, conducted a study that included paired clinician and patient perspectives on the use of biomarker testing. The study’s goal was to identify barriers to equitable precision medicine access among underserved patients with NSCLC.
Among the clinicians surveyed, most said they would discuss biomarker testing with their patients, however the likelihood of ordering guideline-concordant testing decreased for patients with lower socioeconomic status and health literacy – two groups that are more likely to be comprised of racial and ethnic minorities.
“Our research tells us that people with a household income below $50,000 a year are less likely to have a positive experience in gaining access to biomarker testing and targeted therapies,” Martin said.
Among two patient panels surveyed, those in the more racially diverse and lower income cohort were less likely to report receiving biomarker testing and less likely to know of their results if tested. They also reported less confidence in asking their doctor about why biomarker testing was not performed.
“Patients connected to a patient advocacy group like LUNGevity were significantly more likely to receive biomarker testing, suggesting a strong role for patient advocacy groups to help drive guideline-concordant testing among underserved groups,” Martin noted.
Breaking the Barriers
According to Martin, the study provided an important data point to support the need to expand and enhance patient education and patient-provider communications related to biomarker testing. To that end, LUNGevity and ACCC have embarked on development of an interventional care sequence plan to increase the rate of biomarker testing for patients with lung cancer in underserved communities.
The interventional care sequence plan is based on the 4R Oncology Model, a four-step cancer care delivery model that focuses on the Right Information and the Right Care for the Right Patient at the Right Time. It includes development of a tool that details the interdependent sequence of events and conversations in the cancer diagnosis and treatment process. The intuitive tool is designed to make it easy for patients to understand where they are in the process. According to Martin, this type of tool has been used successfully in the breast cancer community, and patients consistently rate it highly in surveys.
The tool, developed in conjunction with oncologists and oncology care teams at the sites where it will be deployed, is currently being piloted at three ACCC care centers. Later, a scalable, generalized version will be created for broad implementation at community cancer centers nationwide.
LUNGevity also is developing a series of patient-friendly, plain-language educational materials about biomarker testing and why it’s important to wait for test results – which can often take upwards of a month – before determining and moving forward with a course of treatment.
“We want all cancer patients to feel comfortable having these ‘care sequence’ conversations with their provider and to receive appropriate information geared to their health literacy so they can take an active role in care decisions,” Martin said. “We also want patients who are worried about the costs involved with biomarker testing and precision medicine treatments to know that there are financial resources available to help and that they should discuss their financial concerns with their care team’s financial navigator or social worker. Cost should never be a barrier to care.”
Reaching Underserved Communities
The research and intervention program with ACCC is just one way that LUNGevity is driving awareness of comprehensive biomarker testing among the NSCLC patient community. The Foundation also is spearheading No One Missed, a campaign to build public awareness and empower patients. Later this year, LUNGevity will extend the campaign to specific cities around the U.S. to educate patients and providers about biomarker testing. Each city will have a custom approach to reach underserved populations by working with Black and Latinx community organizations.
For patients who have received biomarker testing and results, LUNGevity created a resource called Lung Cancer Patient Gateway, a user-friendly web portal that offers the latest medical updates and potentially lifesaving resources for people living with various lung cancer markers. Portals will also be available for people with NSCLC who don’t have a mutation and for people with small cell lung cancer. The portal helps patients learn about their mutation, find a specialist, join a variety of online communities, explore clinical trial options, and read up-to-the-minute, curated news and trends.
“We understand that internet access can be a challenge in some homes,” Martin concluded. “We encourage patients without reliable broadband access or a home computer to find resources through community centers so they can access this interactive resource to share their stories and learn from the experiences of others just like them.”