By: Matthew Gavidia
Discussions regarding health equity and access to care have long been implicated in breast cancer. Here, key opinion leaders discuss the latest progress in clinical trial access, digital therapeutics, and other efforts that aim to ameliorate these care gaps.
In the treatment paradigm for breast cancer, precision medicine and emerging therapeutics have created novel opportunities to address the physical burden of disease. However, issues regarding access to these innovative therapies and interventions for the mental aspects of diagnosis continue to prove significantly unmet, particularly in underserved communities nationwide, according to experts interviewed by The American Journal of Managed Care® (AJMC®).
Despite a universal drop in mortality rates for breast cancer, Black women continue to experience double the 5- and 10-year mortality rates compared with White women. In unpacking these notable disparities, issues regarding insurance status, financial well-being, and other social determinants of health have long been cited as contributors to adverse outcomes among minorities with breast cancer.
However, biology has also been indicated as a potential reason for these disparities, in which research has shown an increasing link between Black women and aggressive subtypes of the disease, such as triple-negative breast cancer and inflammatory breast cancer.
With Black women also more likely to receive their diagnosis at younger ages and at more advanced stages of disease, preventive measures, such as screening, to account for the difference in risk have long lagged in adoption for these populations. Moreover, there are concerns regarding the applicability of emerging oncology therapies in minority groups, as the clinical trials performed to assess these therapies largely excluded these populations.
A recent article by the American Society of Clinical Oncology (ASCO) shows that Black patients constituted less than 4% of all patients enrolled across multiple trials that supported the approval of immune checkpoint inhibitors for the treatment of lung cancer, with similar underrepresentation referenced for trials conducted in renal cell carcinoma and other tumor types.
Barriers to Minority Access/Uptake of Breast Cancer Clinical Trials
In addressing the lack of minority representation in clinical trials, Megan-Claire Chase, partnership director, GRYT Health, spoke in an email exchange with AJMC® on the patient- and clinician-specific barriers that contribute to these disparities.
As a Black woman and breast cancer survivor, Chase highlighted the stigma associated with clinical trials in diverse communities due to past experiences regarding Henrietta Lacks and the syphilis experiments on Black men at Tuskegee from 1932-1972.
“There are many more atrocities like these, and they are stains that remain at the forefront of every Black person’s mind when they hear the words clinical trial,” she said.
With these doubts already top-of-mind for minorities when considering enrollment for clinical trials, Chase added how clinician management during her breast cancer diagnosis, especially when trying to seek support during active treatment, was a traumatizing experience that further contributed to her mistrust in clinical trials and the health care system.
“I have been consistently questioned about the type of breast cancer I had because it was not triple-negative, which is most prevalent in the Black community. We are not all the same. It was a bitter discovery to see that racism and biases occur within the cancer space, too.”
Although not initially setting out to become a patient advocate, these experiences led Chase to start a blog to highlight the struggles of being a young adult cancer survivor and to empower those in diverse communities to know they and their voices matter.
Specifically, Chase listed 5 things she feels are warranted to improve trust between the medical community and diverse patients from the moment they meet to conversations regarding participation in clinical trials:
- SEE US. Chase said physicians need to learn how to speak without sounding condescending, particularly when using medical terminology. “If we don’t understand what you are saying, some of us will ask you to explain it in a different way. But not all Black people or people of color will speak up due to possible lack of education, a language barrier, or sheer nerves.”
- LISTEN TO US. Noting the progression in her breast cancer diagnosis after 2 years of having her concerns overlooked, Chase said it was because she did not have the typical breast cancer symptoms observed in a White woman. “Therefore, diversity is needed in clinical trials because we do not all have the same symptoms.”
- BE PRESENT WITH US. Chase emphasized the need for physicians to give their full attention to each patient, no matter the color, at that moment. “We notice their body language and lack of eye contact. Many of us will feel rushed and not say what we wanted to say. This is a missed opportunity for physicians to develop trust within these diverse populations.”
- BELIEVE US. Chase spoke on the lack of belief regarding pain, highlighting “not all of us are drug seekers. We want to get to the root cause of the pain.”
- INCLUDE US. In considering a clinical trial, Chase said patients look to the physicians for recommendation and it should not always be on the patient to determine this. “Many of us do not understand when to even consider a trial or what that could mean for our quality of life or what you are doing with our information.”
Elevating the unheard voices of diverse communities is the focus of a recent collaboration between Chase’s organization GRYT Health and Bristol Myers Squibb, which recently launched a disparities-focused virtual platform called Diversity in Oncology.
With more than 281,550 new cases of invasive breast cancer and 49,290 new cases of noninvasive breast cancer estimated to affect US women this year, she stressed the need to have diverse communities heard and included to have any hope of improving health disparities present for individuals who are forced to live them every day.
“Although acknowledging health disparities AND taking action to address them is recent, we are seeing serious and systematic efforts at the highest levels now,” she said. “We believe by having these necessary and courageous conversations around health equity issues and collaborating with those living the disparities, we will be able to cocreate structural change, together.”
Mental Health Solutions for Patients With Breast Cancer
With health disparities growing in national conversation amid the pandemic, unmet gaps in care regarding mental health have also been spotlighted. For patients with breast cancer, these issues can often coincide due to the mental and emotional strain caused by diagnosis and subsequent care.
“My original symptoms before receiving an official breast cancer diagnosis went unheard for over 2 years. That was 2 years of consistently being dismissed and told I just need to lose weight and reduce stress,” said Chase. “When I finally received the diagnosis of stage 2A invasive lobular breast cancer in September 2015, I felt validated but also crushed because no one took my symptoms seriously until I felt a thickness in my left breast.”
Fueling feelings of stress, anxiety, and depression, the pandemic compounded the emotional burden affecting patients with breast cancer, either those who receive a new diagnosis or those fearing possibility of recurrence.
In managing these mental health concerns, emotional and well-being support services, which are vital for survivorship, are frequently and commonly nonexistent, unaffordable, inaccessible, and/or not part of oncology care for the general cancer population, noted Betty Sanchez, MSc, MA, advocate and patient advisor, Blue Note Therapeutics, in an email exchange with AJMC®.
In discussing her experience as a survivor of metastatic breast cancer, Sanchez said she was fortunate to have received face-to-face, onsite mental health services from a local nonprofit organization that collaborated with her oncologist and hospital care system prior to the pandemic. However, when COVID-19 upended all elective procedures and care, her depression and anxiety, which had been kept at bay, returned.
As was seen during the pandemic, the expansion of telehealth opened access and care delivery possibilities for millions of patients across the US health care system. Specific to breast cancer, in which deferred care could lead to poorer treatment outcomes, Sanchez’ organization Blue Note Therapeutics recently announced a collaboration with the Memorial Sloan Kettering Cancer Center to develop an app that provides people living with cancer accessible, on-demand care to treat fear of recurrence.
“Digital therapeutics for cancer-related distress following a breast cancer diagnosis—and what follows—can have a strong impact on raising patient self-awareness that mental health, emotional, and well-being treatment services are important and can be respectfully available and readily accessible,” said Sanchez.
Noting the potential of digital therapeutics to remove barriers that contribute to health disparities, such as transportation and access, Sanchez added that the audio teachings and reminders available through the app can provide culturally sensitive care, which can assist patients in learning how to reflect, breathe, relax, think about sleep quality, and identify differences in stressors and anxiety.
“With the introduction of prescription digital therapeutics to treat the mental health comorbidities of cancer, there is an opportunity for providers to meet the whole-person, at-home needs of their patients,” said Blue Note Therapeutics in a statement to AJMC®.
Blue Note said that its development of digital medicines includes a diverse set of patient advisors, partners, and clinical trials designed to represent the full range of US communities, with particular attention to the barriers of receiving equitable access to psycho-oncology care.
“Our digital therapeutics provide a tool to manage the accompanying distress of cancer, while also providing problem-focused approaches necessary to contemplate medical decisions going forward and, ultimately, increase treatment success overall.”
This article was originally published on AJMC®.
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.