This is the second post in a blog series on the National Comprehensive Cancer Network (NCCN) Policy Summit: Reducing the Cancer Burden through Prevention and Early Detection.
In opening the day’s first panel session, titled “Investing in the Invisible: Strategies to Advance Risk Identification, Communication, and Reduction,” Maimah Karmo—founder of the Tigerlily Foundation—immediately grabbed the attention of everyone in the room. She identified herself as a 16-year survivor of triple-negative breast cancer and shared her cancer journey. In short, Karmo noticed a lump growing in her breast and went to the doctor to get it checked out. She was then denied screening services by four providers because she did not match who providers at the time expected of a patient at risk for and in need of breast cancer screening.
It took months for Karmo to fight her way through the healthcare system to receive a confirmed cancer diagnosis and begin treatment. Today, she stands strong as a survivor of triple-negative breast cancer and advocate for other young women, so they do not have to face the same disparities in care at any point in the cancer care continuum that she did.
Next to Karmo sat Carol M. Mangione, MD, MSPH, chair of the United States Preventative Services Task Force (USPSTF)—the organization that develops and updates nationally recognized recommendations for screening and prevention, including cancer screenings. There’s nothing that the USPSTF says to treat a patient who presents with symptoms of disease and/or a physical tumor, given that cases fall outside of USPSTF recommendations for asymptomatic women (e.g., age-related limitations or no family history of disease), Dr. Mangione said in response to Karmo’s story, adding that this care gap “is something that needs to be addressed.”
Challenges Impacting Patients and Providers
“We practice so much reactive medicine in this country and not enough proactive medicine,” said Michael Hall, MD, MS, Department of Clinical Genetics chair at Fox Chase Cancer Center. He identified the biggest challenge to risk identification and reduction of cancer in the United States as convincing the public that genetic testing is the right thing to do before they get cancer. Dr. Hall attributes this need to the current practice of medicine, which is embedded in reacting to a disease with treatment rather than proactively identifying traits among the public that lead to disease. And part of this struggle is rooted in health disparities.
Kate Mevis, executive director of U.S. Federal & State Vaccine Policy at Merck, explained that the COVID-19 pandemic is the largest modern-day example of how impactful health disparities are to healthcare access and patient outcomes. Additionally, as companies began distributing their COVID-19 vaccine, there was an immediate realization within the healthcare system and the world at-large of the disparities that impact particular communities, she said. And in this scenario, the U.S. saw state and federal agencies addressing these disparities, including bridging access to and information on COVID-19 vaccines to targeted communities “on a dime.” Therefore, Mevis believes that the community efforts seen throughout the COVID-19 pandemic can be applied to the challenges seen in genetics and cancer risk reduction.
Ultimately, Karmo believes that true efforts to mitigate health disparities nationwide must include patients at the center, adding their voices and opinions to improve care delivery and the patient experience. “How do we engage patients as equal partners?” Karmo asked. In addressing this question, Dr. Mangione shared how the USPSTF works with various patient advocacy organizations to include their voice and allows anyone to provide feedback to the Task Force’s recommendations and updates before they are finalized. Additionally, USPTF is currently working on a project that would increase patients’ voice in its recommendation development process.
Further, Drs. Hall and Ernest Hawk, MPH, vice president and division head, Division of Cancer Prevention and Population Sciences, and Boone Pickens distinguished chair for Early Prevention of Cancer at MD Anderson Cancer Center, agreed that improvement is being made in this space on a national scale. To receive a designation by the National Cancer Institute, cancer programs are required to host patient advisory groups internally to drive program development and improvements. “We don’t start any project outside the institution without engaging the community to direct and advise us,” said Dr. Hawk.
And what about people like Maimah Karmo who do not match screening guidelines or recommendations? “Quite frankly, we have got to start talking to each other,” said Lisa Richardson, MD, MPH, director of the Division of Cancer Prevention and Control at the Centers for Disease Control and Prevention. Instead of working in silos, improvements can only be made once all stakeholders, including patients and providers, are invited to the table—nationwide and within local efforts—as equals to share their experiences and challenges and brainstorm new ideas to overcome these challenges.
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