Addressing Disparities: The Patient Perspective
Two of the most pivotal messages patients can receive from their doctor are: “You have cancer” and “Here are your treatment options.” The latter relies heavily on whether the cancer was detected early or at a later stage, but it’s in the early detection/screening phase that cancer disparities become evident, according to Thomas A. Farrington, BSEE, Founder and President, Prostate Health Education Network (PHEN), and a member of the NCCN Guidelines for Prostate Cancer and Prostate Cancer Early Detection panels. These disparities lead to higher morbidity and mortality rates, so achieving equity in cancer care begins early, he said.
Mr. Farrington was diagnosed with prostate 3 months after he lost his father to the disease. “You can imagine the emotional impact that had on my family,” he said at the NCCN 2022 Annual Conference. “Cancer is a family disease; for most people, all decisions made along the patient journey will involve loved ones.”
According to Mr. Farrington, cancer prevention/early detection screening is the true beginning of a patient’s journey, because this will define the remainder of that journey, as well as many other aspects of life. With the early detection of prostate cancer, the 10-year survival rate is >90%, but with advanced disease it is approximately 30%. For Mr. Farrington, there was good news and bad news: he was diagnosed with unfavorable intermediate prostate cancer.
“Black men have the highest incident rate of prostate cancer, and we have double the mortality rates of men in any other ethnic and racial group,” he said. “This disparity in early detection and screening is certainly a major reason we have a mortality rate that’s more than twice as high.”
According to Mr. Farrington, the patient community understands that early detection, screening, and prevention are high priorities that need to be addressed to achieve equity in cancer care, but disparities during the treatment phase are another concern. Unfortunately, the latter can be more difficult to detect, he said. “But we’re talking about these issues a lot more than when I was diagnosed in 2000, so there’s a lot more visibility now,” he said. “We’re hopeful we can make real progress that will have significant impacts in eliminating these disparities.”
Under Mr. Farrington’s leadership, PHEN is now recognized as a leading prostate cancer education and advocacy organization in the United States, with national programs and initiatives focused on the needs of Black Americans.
The Same, Only Scarier: Cancer in the LGBTQ+ Community
“’We’ve all heard the phrase, ‘cancer doesn’t discriminate,’ and while it may not, the care we receive absolutely does,’” said Liz Margolies, LCSW, Founder and former Executive Director, National LGBT Cancer Network. According to Ms. Margolies, members of the LGBTQ+ community face barriers to care, including discrimination in healthcare and low rates of health insurance coverage, making them less likely to undergo routine cancer screenings. “I would say this definitely translates to a greater incidence of cancer in our community,” she said. “But because none of the national cancer registries collect information about sexual orientation or gender identity, we are left hidden in the data.”
Research demonstrates that LGBTQ+ people fare worse following diagnosis and treatment compared with heterosexual cancer survivors. A 2021 survey conducted by the National LGBT Cancer Network collected data from >2,700 adult respondents who self-identified as LGBTQI+.
According to Ms. Margolies, the survey revealed some major takeaways from the general population of respondents.
In general, LGBTQI+ cancer survivors report welcoming cancer care.
“However, this did not always come easily or on the first try,” she noted. “We are a diverse community, and not all subgroups have experienced the same welcoming care.” Transgender and nonbinary people (referred to in the survey as “gender-expansive”) fared far worse with their treatment, and people of color were twice as likely to report unwelcoming care.
LGBTQI+ cancer survivors have alternative social support structures compared with the general population.
Non-LGBTQ people rely mostly on spouses and families of origin for support, but for many, their primary support team includes “chosen family,” which may or may not include biologic or legal relatives. Primary support from parents was cited among just 29% of survey respondents.
LGBTQI+ cancer survivors express a desire for, and lack of, LGBTQI+-tailored resources.
LGBTQI+ cancer survivors report difficult provider interactions, possibly because of implicit bias.
Additionally, this group cited environmental indicators of welcoming care (ie, rainbow stickers, gender-neutral bathrooms, and gender-inclusive intake forms) as significantly more important in identifying safe spaces to receive cancer treatment and care.
The 387 BIPOC (Black, Indigenous, and People of Color) survey respondents cited even further barriers to care, including more negative encounters with care providers than their White counterparts, and delayed cancer screenings and treatments.
According to Ms. Margolies, cancer providers can do their part to combat the barriers faced by the LGBTQI+ population by not assuming gender, sexual orientation, or any other preferences; receiving training to serve this population better; earning trust by understanding that members of this population have likely had negative experiences in healthcare; taking steps to include the LGBTQI+ population in the office atmosphere; and (finally) listening. “Ask us who we are and what we need,” she said. “We want to be asked, and we want to tell you.”
Equity Efforts and Clinical Impact
According to Shonta Chambers, MSW, Executive Vice President of Health Equity Initiatives and Community Engagement, Patient Advocate Foundation (PAF), it’s up to organizations to redesign their current structures with an intentional approach toward equity. “Our path forward—our goals around addressing and achieving health equity—won’t happen without an intentional effort,” she said. “We know that from history.”
According to Ms. Chambers, since its founding >25 years ago, PAF has addressed the intersectionality of social needs, access, and adherence to care. “Over the years, we’ve evolved from our focus on equality to a more advanced agenda, focusing on health equity,” she noted.
Many of the factors that hinder or advance health are rooted in social determinants of health—the conditions in which people are born, live, learn, work, and play—and they affect a wide range of health functioning, quality-of-life measures, outcomes, and risks. Although many of these determinants occur outside the healthcare system, healthcare providers must understand they are paramount to clinical outcomes, she said. “We will not improve health outcomes if we don’t improve our approaches to addressing social determinants of health or, more specifically, the social needs caused by them,” she added.
According to Ms. Chambers, resource allocation is a fundamental approach to addressing health equity, so PAF used a reasonable, uniform, and verifiable way to identify a set of counties with extreme need for financial support, based on disease burden and social vulnerability. They identified 183 counties with very high social vulnerability index (SVI) scores. The SVI index looks at 15 variables spanning 4 themes: socioeconomic status, household composition and disability, race/ethnicity and language, and housing or transportation status. They used the information from the SVI to launch the Patient Advocate Foundation Copay Relief Program, designed specifically for individuals in those counties. However, reach was expanded from the 183 counties identified to 220 counties who were living with diabetes, cardiovascular disease, cancer, or HIV/AIDS.
PAF has also built a collaborative model to address health equity, called Patient Partners for Equity, described in Figure 1. “This gives our community-based organizations direct access to many of the programs and services that PAF provides,” she said.
Patient Partners for Equity: a collaboration model to address health equity. PAF’s goal is to expand the degree to which our programs and services effectively reach and serve diverse patients in a way that facilitates their opportunity to attain the highest level of health, produces data, and patient stories that enable advocacy and policy activities to address social needs gaps.
Abbreviation: PAF, Patient Advocate Foundation.
Citation: Journal of the National Comprehensive Cancer Network 20, 5.5; 10.6004/jnccn.2022.5025
However, according to Ms. Chambers, these efforts cannot be sustained without policy changes. They are currently working on a policy initiative focused on socializing, standardizing, and bringing to scale reimbursement and support for social needs navigation. “We see patient navigation as our path forward in working alongside individuals with enormous social need gaps, to help connect them to the social resources they need to be able to access and adhere to care,” she said.
Improving Racial/Ethnic Diversity in Clinical Trials
In 2021, racial/ethnic minorities represented 15% of all cancer clinical trial participants, despite making up 40% of the US population, according to Maria D. Garcia-Jimenez, MD, MHS, UCLA Jonsson Comprehensive Cancer Center (JCCC). “Clinical trials in oncology are crucial to improving patient outcomes by giving patients access to the most novel therapies available,” she said. “Having disparities in who’s represented in clinical trials is only going to further widen inequities in cancer care and cancer outcomes.”
The reasons for the lack of representation in clinical trials are multifaceted, as illustrated in Figure 2. Dr. Garcia-Jimenez detailed some of the efforts she and her colleagues at JCCC are putting forth to address barriers at each of these levels.
A multilevel problem: lack of representation in clinical trials.
Citation: Journal of the National Comprehensive Cancer Network 20, 5.5; 10.6004/jnccn.2022.5025
For instance, at the health system level, they are working to improve the infrastructure of clinical trials at UCLA community clinic sites by partnering with more diverse communities. “With the UCLA JCCC Oncology Clinical Trials Network, we’re not only able to partner with community oncology practices,” she noted, “but we are also able to bring to these practices the infrastructure and support required to conduct clinical trials of the same high quality as our main campus.”
They are also working to increase research resources at UCLA community clinic sites and to change the internal scientific review process, focusing on diversity as a standard of “good science.” Other initiatives are aimed at addressing barriers at the community, provider, and patient levels.
The Clinical Trials Community Advisory Committee—made up of community organization representatives/leaders, patients, survivors, and JCCC representatives—is focused on increasing engagement, enhancing partnerships, and building trustworthiness at the community level, while increasing awareness of barriers and promoting “equity-mindedness” at the provider level. Another initiative is aimed at building trustworthiness on a patient level by increasing awareness/understanding of clinical trials through the use of culturally/linguistically appropriate clinical trial services.
Ultimately, said Dr. Garcia-Jimenez, improving equity in clinical trials will require a culture change: a patient-centered and equity-minded approach to cancer research, where every human being counts.
Cancer Equity and the Policy Landscape
Alyssa A. Schatz, MSW, Senior Director, Policy and Advocacy, NCCN, provided a brief update on the Elevating Cancer Equity initiative and discussed policy opportunities designed to address systemic inequities. “Numerous studies find that nonadherence to NCCN Guidelines is a significant contributor to racial disparity in overall survival,” she said. “As such, NCCN recognizes that we have a key responsibility to advance more equitable cancer care outcomes.”
To address this issue, NCCN has partnered with the American Cancer Society Cancer Action Network (ACS CAN) and the National Minority Quality Forum (NMQF) to launch the Elevating Cancer Equity initiative. The goal of this initiative is “moving from conversation to action” on addressing disparities in cancer care outcomes across race and ethnicity, with the help of patient, caregiver, and oncologist survey-respondents, as well as a working group of national experts. The Health Equity Report Card was born from this initiative and developed by the Elevating Cancer Equity working group. The Health Equity Report Card is a tool for providers, payers, and accreditation entities working to advance racially equitable practices in cancer care. The report card includes 17 practices to advance equitable care delivery divided into categories such as including community engagement, accessibility of care and social determinants of health, addressing bias in care delivery, and quality and comprehensiveness of care.
Moving forward, NCCN will be piloting the Health Equity Report Card with 5 volunteer NCCN Member Institutions. “We developed an implementation plan for this report card with feedback from providers on feasibility and sources of evidence to use for measurement,” Ms. Schatz explained. The primary aim of the pilot is to assess the feasibility of implementation of the Health Equity Report Card and to make it translatable to community settings. “But real change is only possible with structural and systemic change as well,” she added.
The working group developed a total of 16 policy change recommendations for action by Congress, payers, federal agencies, and state governments. These recommendations attempt to address systemic barriers across the entire cancer care continuum, including clinical trial diversity, workforce diversity, early detection and prevention, cultural and linguistic appropriateness of care, and patient navigation. The recommendations were presented at a congressional briefing, and the work has already resulted in steps toward introducing the DIVERSE Trials Act. This legislation is intended to make it easier for clinical trial sponsors to cover the ancillary costs associated with clinical trials.
According to Ms. Schatz, a “real victory” for equity occurred in 2020, when the Clinical Treatment Act was passed. This act requires state Medicaid plans to cover the routine costs associated with clinical trials. “That law is now in effect,” she said. “We can all play a role in making sure that people are actually aware of the benefits they are entitled to.”
