On Feb. 23, two exciting cancer initiatives converged in San Antonio, Texas: the Biden Administration’s Cancer Moonshot, and the third Advancing the Science of Cancer in Latinos biennial conference.
The first lady of the United States, Dr. Jill Biden, has had a longstanding dedication to the mission against cancer, from her personal involvement promoting awareness and philanthropy in breast cancer extending many decades, to her direct engagement with the Cancer Moonshot, which began in the latter years of the Obama-Biden Administration. Both the president’s and Dr. Biden’s commitment to the mission against cancer is driven by the personal impact of the loss of their son Beau Biden to a glioblastoma tumor and a professional dedication to this cause.
President Biden has called on the cancer community to “end cancer as we know it” and to decrease cancer mortality by 50% over the next 25 years. He reignited the Cancer Moonshot as part of that effort on Feb. 2. In support of building awareness around these efforts, Dr. Biden, frequently accompanied by National Cancer Institute Director Dr. Ned Sharpless, has been visiting NCI-designated cancer centers throughout the country, including Massey Cancer Center at Virginia Commonwealth University, Hollings Cancer Center at the Medical University of South Carolina, and Moffitt Cancer Center in Tampa earlier in February.
One way the Cancer Moonshot aims to “end cancer as we know it” is to tackle barriers to cancer health equity, so it was natural that Dr. Biden and Director Sharpless chose to time a visit to the Mays Cancer Center at UT Health San Antonio during the cancer center’s Advancing the Science of Cancer in Latinos conference, Feb. 23-25.
Mays Cancer Center visit
The visit by Dr. Biden and Director Sharpless began with a focus on the reignition of cancer screenings and the concerns about the long-term impact of delayed cancer screenings brought on by the COVID-19 pandemic.
The Mays Cancer Center’s Cancer Prevention and Screening Program took center stage, where Ramon Cancino, co-director of the Prevention and Screening Program at Mays Cancer Center and director of the UT Health Physicians Primary Care Center at UT Health San Antonio, described this significant need and the recent uptick in later-stage presentation of colon and breast cancer related to delayed screenings.
Cancino described the unified efforts under the umbrella of Mays Cancer Center to coordinate and reignite cancer screenings across all of UT Health San Antonio, with engagement from the gastroenterology, urology, gynecology, pulmonary, and dermatology programs, plus radiology and primary care. Promotion through social media, local media appearances, and leveraging the electronic medical record for contacting patients with missed screenings were also implemented.
Drs. Biden and Sharpless also heard firsthand from Jeannette Sanchez, a community health worker at UT Health San Antonio, about patient outreach, and from a patient whose cancer was identified through these efforts and is now under therapy at the Mays Cancer Center. Dr. Biden is deeply concerned about the support cancer patients receive, both for them and for their loved ones and caregivers.
The next topic discussed during the visit by Dr. Biden and Director Sharpless was comprehensive patient support.
They heard from Jeanie Paradise, director of patient services at Mays Cancer Center, who described the unique Mays Cancer Center RISE Project, which includes integrated patient supportive care services (emotional support, financial counseling, social work, nutrition support, and so forth) and aligned cancer supportive subspecialties such as cancer rehabilitation, cardio-oncology, primary care, onco-nephrology, survivorship care, palliative medicine, psychiatry and psychology, endocrinology, and brain health. Brian Fricke, the medical director of cancer rehabilitation at Mays Cancer Center, explained how having access to these services improves quality of life for cancer patients during their care journey.
Following Dr. Fricke, they heard from a patient who first faced breast cancer, then overcame a challenging journey with delayed onset severe lymphedema as an example of the challenges even long-term cancer survivors can face.
The final aspect of the visit was a centerpiece panel focused on Advancing the Science of Cancer in Latinos, livestreamed to the conference attendees and visible in its entirety here.
Advancing the Science of Cancer in Latinos conference
Dr. Amelie G. Ramirez of the Mays Cancer Center and the Institute for Health Promotion Research at UT Health San Antonio launched the biennial Advancing the Science of Cancer in Latinos to bring together experts and advocates from all fields to share perspectives and ignite collaboration to address Latino cancer disparities.
Latinos are a dynamic, diverse, and growing population. Within a few decades, one in four people in the United States will be Latino.
Cancer threatens the future health of this population. Cancer is not only the number one cause of death for Latinos, but Latinos also suffer higher rates of stomach, liver, and cervical cancers than their white peers, and fewer prostate and breast cancers are diagnosed at local stages among Latinos.
The 2022 Advancing the Science of Cancer in Latinos conference welcomed over 200 of the best and brightest Latino cancer researchers, clinicians, oncologists, community leaders, patient advocates, and students from across the nation and internationally for an open dialogue on research advancements and actions to translate basic research into clinical best practices, effective community interventions, system change advocacy, and professional training to eliminate cancer disparities in Latinos.
Dr. Ramirez and these experts shared new research data on topics spanning genomics, therapy, screening, and quality of life of survivors. They also built collaborative knowledge and relationships and shared strategies to move toward equitable cancer prevention, treatment, and survivorship.
Photo credit: Official White House photo by Erin Scott
The conference galvanized around a key underlying issue: health equity. Health equity means everyone has a fair and equal opportunity to be their healthiest. True change starts when we focus on solving “upstream” systemic and structural factors and not just focus on mending “downstream” symptoms or outcomes.
Unfortunately, a widening socioeconomic gap, structural racism, and discrimination contribute to inequitable distribution of health care and mental and physical health disparities among Latinos and other people of color, as well as those living in poverty, especially amid COVID-19.
Structural racism and generations of disinvestment in communities of color have produced inequities and disparities in health because communities do not have adequate access to quality housing, reliable transportation, healthy food, and health insurance, along with other drivers of inequity that impact health and health care.
Without addressing the systemic inequities that contribute to social and health risk factors, disparities in cancer and disease prevention and treatment will remain elevated among populations of color, and these same populations will continue to be burdened with the most expensive care.
To further drive the conversation around equitable solutions to Latino cancer disparities, a trio of attendees from Advancing the Science of Cancer in Latinos shared with Dr. Biden a variety of best practices and multidisciplinary efforts from NCI-designated cancer centers in Latino-centric regions across the country.
Panel topic 1: Optimizing quality of life and symptom management
Dr. Patricia Moreno, a clinical psychologist and cancer survivorship researcher, discussed the importance of optimizing quality of life and symptom management to ensure that cancer patients and survivors live as well as possible during and after cancer treatment. Dr. Moreno stated that cancer treatment can result in acute and chronic symptoms like pain, nausea, fatigue, and anxiety that significantly and negatively impact quality of life and emotional well-being among individuals diagnosed with cancer.
Furthermore, treatment of side effects and toxicities can reduce patients’ tolerability of prescribed regimens and even lead to serious health complications. Therefore, Dr. Moreno emphasized the need to routinely assess patients’ needs and both psychological and physical symptoms as part of their oncology care to systematically identify quality-of-life concerns as early as possible and effectively address them.
Dr. Moreno highlighted an initiative at the University of Miami Sylvester Comprehensive Cancer Center called My Wellness Check. Prior to their oncology appointment, patients complete standardized measures of pain, fatigue, physical functioning, anxiety, and depression, as well as assessments of practical, nutritional, and emotional needs.
These assessments are scored in real time and are integrated into the electronic health record so that they are available immediately to both patients and providers. Providers are also automatically alerted of a patient’s elevated levels of psychological and physical symptoms. This initiative ensures that patients and providers have meaningful conversations about quality of life and patients are connected to the right services as quickly as possible.
Dr. Sharpless emphasized to Dr. Biden the importance of initiatives like My Wellness Check.
“An important point is that in the old days you would go in and see your oncologist once every three weeks for treatment and they would say, ‘How do you feel?’ and you would say, ‘I feel OK,’ and he or she would move on,” Sharpless said. “We missed about half of their symptoms. So, this movement to use the internet and digital tools and cell phones—this patient-reported outcomes movement—is really important. The Food and Drug Administration is really interested in this because it’s a way to understand the toxicities of [cancer] regimens because we find that patients vastly underreport [their symptoms] when they just spend 10 minutes with their doctor. So, this is really important to understand the toxicity of our regimens.”
Dr. Moreno shared that she recently received a five-year grant funded by the NCI to study how My Wellness Check can improve quality of life and symptom management specifically in Hispanics and Latinos who have metastatic cancer by ensuring that they receive the best care possible and are connected to services like palliative medicine earlier. Metastatic cancer is an area of cancer survivorship that has received very little attention, particularly among Latinos and other racial and ethnic minorities.
Panel topic 2: Increasing caregiver and patient advocacy
Dr. Barbara Segarra Vazquez, a two-time breast cancer survivor, addressed two topics: caregivers and patient advocacy. Caregivers are the unsung heroes of a cancer patient’s journey. Helping loved ones while they shift roles and responsibilities is a great burden for caregivers. The quality of life of cancer patients improves with strong support from their loved ones.
Caregivers’ needs include:
- Knowledge (of the disease, treatments, side effects, palliative care, and what to expect).
- Emotional support (from friends and family, professionals, and support groups, and resources to manage grief and stress).
- Financial support (how to protect personal finances and identify financial assistance available).
- Time to care for themselves (meals for the family, free time to relax, and someone to listen to their fears and concerns).
Most of all, caregivers should be recognized and valued for the critical role they have in a cancer patient’s life.
Patient advocates have been key players in advancing the science of cancer. Breast cancer advocates have been leaders in achieving patients’ participation at decision-making levels and committees, such as within FDA and NCI. They have demonstrated that they are experts in these diseases and have impacted research, policies, and the quality of life of those with cancer.
Likewise, the voices of advocates must be diverse. Currently, there is a lack of Latino patient advocates, perhaps because there is an assumption that no one will listen or because there is a lack of training and opportunities for minorities to actively participate as advocates. As we continue to aim for equity and inclusion in research, voices of diverse populations—especially Latinos—must be included to represent the issues of those who have cancer.
In Puerto Rico, Dr. Segarra-Vazquez and two colleagues developed the Hispanics Increasing Diversity to Enhance Advocacy in Science (HIDEAS) project. The project trained 15 breast cancer survivors on the science of breast cancer and advocacy.
After the training and follow-up, 30% of the participants have applied and successfully obtained scholarships to attend meetings such as the San Antonio Breast Cancer Symposium, the Lynn Sage Breast Cancer Symposium, and Living Beyond Breast Cancer. Several of the participants have been invited to serve on patient panels for pharma and other organizations. Currently, one of the participants is a member of a research committee.
Therefore, with knowledge and opportunities, the number of advocates for minority populations can increase and become active and more involved.
Panel topic 3: Addressing the lack of access to care and resources and the gap in actionable data
Dr. Laura Fejerman, a Latina breast cancer genetics researcher, discussed two major problems in cancer risk assessment that contribute to cancer health disparities affecting Latinos.
One is the lack of access to high-quality cancer prevention and care, paired with a lack of awareness in the community about available cancer risk and prevention resources. The second issue is the gap in data availability that leads to a lack of knowledge for precision prevention and treatment in diverse populations.
Regarding the first problem, Dr. Fejerman shared about an ongoing effort at the UC Davis Comprehensive Cancer Center—partly supported by the California governor’s office and the UC Davis CCC Latinos United for Cancer Health Advancement Initiative—to implement a community health educator-led hereditary breast cancer education program for Spanish-speaking Latinas called Tu Historia Cuenta. Dr. Fejerman stressed the need for further funding to support genetic counseling and testing for those at risk.
To begin addressing the data availability problem, Dr. Fejerman shared about the formation of the Latin America Genetics of Breast Cancer Consortium (LAGENO-BC), a multinational collaboration that aims to increase available data for discovery of risk-predisposing variants in Latinas.
These and similar types of efforts for other cancer types are among the first step toward achieving equity in cancer genetics knowledge for cancer risk prediction and risk stratification in diverse populations.
Finally, following up a question from NCI Director Dr. Sharpless, Dr. Fejerman provided an example of a genetic variant, near the estrogen receptor 1 gene, that is associated with breast cancer risk in Latinas and is absent in individuals of mostly European or African genetic ancestry.
This genetic variant, which is associated with lower risk of developing breast cancer, could not have been identified in a study without Latina participants, illustrating the urgent need to ensure the diversity of research study cohorts.
Takeaways and next steps
With these efforts, there is a high level of motivation and determination to eliminate Latino cancer disparities, buoyed by the Biden Administration’s Cancer Moonshot and ongoing progress from the Advancing the Science of Cancer in Latinos conference.
More work remains. According to Dr. Ramirez, we must ensure that cancer research is shaped by the voices of people of color, accounting for changing U.S. demographics and for Latino heterogeneity and other marginalized groups in data collection and analyses.
Here are some key takeaways:
- Biologic work must continue to highlight biomarkers and factors associated with cancer in Latinos to better enable precision medicine for this population.
- Physicians and all members of the health care team must provide culturally and linguistically competent care that addresses social needs for every patient. Providers should also ensure they are free from the implicit bias that has systemically prevented Latinos from receiving equitable care and treatment in the past.
- We must utilize social media and other communication methods to reach Latinos with messages of prevention and to enhance the recruitment and retention of Latinos into potentially life-saving clinical trials where they are currently often absent. As one example, Dr. Ramirez’s Salud America! program uplifts open clinical trials and the stories of Latino clinical trial participants as peer role models.
- We must better understand and support the Latino cancer survivorship journey. Dr. Ramirez’s Avanzando Caminos clinical trial unites Mays Cancer Center and the Sylvester Comprehensive Cancer Center to enroll 1,500 Latino cancer survivors in South Texas and 1,500 Latino cancer survivors in Miami to help unpack the social, cultural, behavioral, mental, biological, and medical influences on post-cancer life.
- We must diversify the fields of science, health care, and leadership. Dr. Ramirez’s Éxito! Latino Cancer Research Leadership Training program at UT Health San Antonio recruits 25 Latino students and health professionals annually for a culturally tailored curriculum to promote pursuit of a doctoral degree and cancer research career.
The U.S. Latino population will continue to grow in number and rise in prominence, as will other racial and ethnic minority groups. At the least, this demands a full commitment to diversity, equity, and inclusion in health care practice and provision that addresses current substantial social disparities and training needs.
