This article has been updated to emphasize that LUNGevity has consistently advocated for comprehensive biomarker analysis in past and current campaigns.
NEW YORK – As part of a new campaign to increase access to comprehensive biomarker testing, lung cancer advocacy organization LUNGevity has drafted a "bill of rights" for patients, which it hopes will empower them to ask their doctors educated questions and advocate for broader tumor profiling.
LUNGevity's overarching aim within the multi-year "No One Missed" campaign, launched in late April, is to "build public awareness of comprehensive biomarker testing as a critical part of every [non-small cell lung cancer] diagnosis and empower NSCLC patients to discuss comprehensive biomarker testing with their healthcare team."
Toward that end, the foundation is working to distribute the patients' "bill of rights" throughout the NSCLC community. In the one-page, downloadable document on its website, LUNGevity states that patients with lung cancer have six key rights when it comes to biomarker testing: the right to engage in shared decision-making with providers; the right to know whether their doctor has already sent their sample out for comprehensive biomarker testing, and, if so, what the results show; the right to access and understand biomarker test results; the right to understand the cost of the test and whether insurance will cover it; the right to seek a second opinion based on biomarker test results; and the right to request a print or electronic copy of the test results.
Multiple drugmakers, including AstraZeneca, Amgen, Genentech, Pfizer, AbbVie, Daiichi Sankyo, Merck, Novartis, and others, are supporting the campaign financially, as are major commercial labs like Thermo Fisher Scientific, Exact Sciences, and Foundation Medicine.
NSCLC patients can access LUNGevity's educational context on its website, but the organization also has partnered with community practices and other advocacy groups to share these resources. In addition to the "bill of rights," the foundation has outlined instructions for patients on how to read a comprehensive biomarker testing report, provided a list of questions about comprehensive biomarker testing to ask their doctors, and answered frequently asked questions about biomarker testing, how it works, and why it's valuable.
These materials, according to Nikki Martin, head of LUNGevity's precision oncology initiatives, were vetted by an agency that specializes in health literacy and sent out to patients for review. They are meant to resonate with patients in clear, concise, and actionable language, she said.
Pivoting to 'comprehensive'
Throughout the suite of resources, LUNGevity has consistently included the term "comprehensive" in its references to biomarker testing. According to Martin, this is a key element of the campaign, and one that is similar to LUNGevity's earlier biomarker testing initiative, Take Aim. According to LUNGevity's messaging, for a biomarker test to be considered "comprehensive," it must test for all biomarkers recommended for a patient's type and stage of NSCLC, based on the most current clinical guidelines.
"Historically, the reason why the lung cancer community has pivoted from just saying 'get biomarker testing' to saying 'make sure it's comprehensive biomarker testing' is because of the prevalence of sites only running EGFR, ALK, maybe BRAF, and PD-L1," Martin said. "If that's the provider's minimum standard, that's a problem for patients, because it's not going to tell them about other promising therapies that are in late-stage clinical trials and can really make a difference to their care."
There are now marketed NSCLC treatments for alterations in RET and MET, and treatments for KRAS-mutated lung cancers are in clinical trials. The list of actionable biomarkers and associated treatments keeps changing, Martin noted. "Because it changes so quickly, providers and the systems aren't necessarily pressing their internal colleagues and leadership to update their processes" to pivot to comprehensive biomarker testing, she said.
This is where LUNGevity is hoping to make a difference with its patient education campaign. If patients feel empowered to ask the right questions of their providers, the foundation hopes, they can push health systems to adopt comprehensive biomarker testing and move away from tests that comparatively report on a more limited set of biomarkers.
LUNGevity's education efforts come as more and more drugmakers are also noting the need for molecular testing as part of their broader marketing plans for biomarker-informed cancer treatments. But these pharmaceutical company-sponsored advertisements typically briefly mention the specific biomarker needed to prescribe the treatment the drugmaker is selling.
The foundation is hoping that its campaign will spur its pharma partners to shift their messaging to be more focused on the need for NSCLC to be tested for all guideline-recommended biomarkers with NGS.
"The main idea behind this campaign is, instead of all these different pharmaceutical companies running their own campaigns around biomarker testing, let's redirect the funding that [the companies] would use for those campaigns into one consistently messaged campaign," Martin explained, adding that LUNGevity hopes to also partner with professional societies that can spread the message to providers. So far, the foundation has partnered with the International Association for the Study of Lung Cancer and the Academy of Oncology Nurses and Patient Navigators.
Reaching underserved patients
"The 'No One Missed' messaging is very important to push out to patients as well as caregivers and advocates," said Charu Aggarwal, an oncologist who treats patients with lung cancer at the University of Pennsylvania, adding that creating a conversation surrounding comprehensive biomarker testing is the most important element to increasing access.
To further expand its messaging, LUNGevity has partnered with biomarker-specific patient advocacy groups, including the EGFResisters, ALK Positive, ROS1ders, KRAS Kickers, NTRKers, MET Crusaders, Exon20 Group, and RET Positive. These groups all have experience reaching NSCLC patients and have their own biomarker testing messages that LUNGevity aims to streamline.
But if the goal is to ensure that no NSCLC patients miss the chance to receive comprehensive biomarker testing, then Martin said the campaign will have to find ways of reaching those not already plugged into advocacy groups. "The point of this campaign is to connect with those other people who aren't automatically finding an advocacy organization for whatever reason," she said.
LUNGevity has hosted panels on Facebook Live and other social media networks, but Martin is well aware of the "echo chamber of social media," since most people who would see the organization's content on these channels are those with whom the foundation has already connected.
"We've been working with the Association of Community Cancer Centers to survey patients outside of our network [and patients with] lower socioeconomic statuses to understand what the biggest barriers are to testing," she said. "That's where we're seeing that … the provider isn't even offering it to them." LUNGevity and ACCC hope to publish their survey findings in the future.
Black and Hispanic patients, for example, are historically more likely to be left out of precision oncology clinical trials and treatment advances and are often more likely to distrust the medical system. Especially considering that NSCLC mortality rates are higher among these patients, LUNGevity is making a concerted effort to make sure its campaign reaches minority patients where they are. For example, to reach medically underserved patients, LUNGevity will advertise and facilitate media stories in publications with diverse readerships and put up billboards in lower-income communities.
Because the No One Missed campaign has received so much funding from industry partners, Martin said, she's hopeful that its reach will expand well beyond social media and infiltrate these historically harder-to-reach patient communities. "As a nonprofit, there's always only so much we're able to do, even if we put together brilliant content," she said. "We need to go beyond [social media] and the limited world we've created with experts and really knowledgeable patients thus far."
In order to achieve its goal of expanding access to comprehensive biomarker testing, LUNGevity's campaign must go beyond patient education and effect system-wide changes.
Martin cited the "provider block" as one of the primary barriers to comprehensive biomarker testing access. "Providers are either not offering or not running comprehensive biomarker testing," she said. Other major barriers she sees include state-level Medicaid and commercial payors' reluctance to cover comprehensive biomarker testing, as well as ensuring that patients' tissue samples are of sufficient quality and quantity to facilitate testing.
These systemic challenges will take time to overcome, but LUNGevity is hoping that as more lung cancer patients are empowered to advocate for comprehensive biomarker testing in their interactions with providers and payors, and in their health systems and communities, it will move the needle.
UPenn's Aggarwal agreed that LUNGevity's campaign addresses a vital component of ensuring biomarker testing access but noted that the campaign's reach must extend beyond patients. "Patient advocates, caregivers, physicians who perform biopsies … the whole multi-disciplinary team that takes care of the patient with lung cancer should be involved," Aggarwal said.